Antonio Iannella’s Journey: Life After Stroke – Overcoming Challenges Abroad and Finding Purpose

Recovery After Stroke

#Podcasting Education #Recovery After Stroke

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In our second installment of the Small Business Starter Kit series - we’re tackling a topic that’s sometimes tricky, sometimes confusing, but ever-present: taxes. Hosts Austin and Jannese have an insightful conversation with entrepreneur Isabella Rosal who started 7th Sky Ventures , an exporter and distributor of craft spirits, beer, and wine. Having lived and worked in two different countries and started a company in a heavily-regulated field, Isabella is no stranger to navigating the paperwork-laden and jargon-infused maze of properly understanding taxes for a newly formed small business. Join us as she shares her story and provides valuable insight into how to tackle your business’ taxes - so they don’t tackle you. Learn more about how QuickBooks can help you grow your business: QuickBooks.com See omnystudio.com/listener for privacy information.…

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Discover Antonio Iannella’s inspiring story of life after stroke, overcoming adversity abroad, and finding new purpose.

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Recovery After Stroke

Antonio Iannella’s Journey: Life After Stroke – Overcoming Challenges Abroad and Finding Purpose

Recovery After Stroke

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published год назад

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Discover Antonio Iannella’s inspiring story of life after stroke, overcoming adversity abroad, and finding new purpose.

The post Antonio Iannella’s Journey: Life After Stroke – Overcoming Challenges Abroad and Finding Purpose appeared first on Recovery After Stroke.

301 эпизодов

#Podcasting Education #Recovery After Stroke

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Recovery After Stroke

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Living with Invisible Stroke Deficits: The Challenges No One Sees 23:01

2 дня назад23:01

23:01

Living with Invisible Stroke Deficits: The Challenges No One Sees Living with Invisible Stroke Deficits: For many stroke survivors, the hardest battles aren’t the ones that people can see. They’re the invisible struggles—fatigue that knocks you down before the day even starts, sensations that are impossible to explain, and the mental weight of feeling misunderstood. Recently, I shared a video where I opened up about these challenges in a way I hadn’t before. I simply walked, talked, and shared my unfiltered experience of life after stroke. To be honest, I wasn’t sure how it would be received. But the overwhelming response—messages from fellow survivors saying, “Yes, that’s exactly how I feel!” —has been both humbling and deeply moving. Why Invisible Deficits Matter When people see me walking “normally” or hear me speak without hesitation, they assume I’m fully recovered. And while I have come a long way in my recovery since my first stroke in 2012, the truth is that I live with persistent neurological deficits every single day. Some of the things I deal with include: Fatigue that isn’t just tiredness —It’s an all-encompassing exhaustion that makes even simple tasks feel impossible. Strange, unexplainable sensations —I can feel each step I take in the back of my head. My left side always feels different from my right, like I’ve already run a marathon on one side while the other is fresh. Spasticity and muscle tightness —It’s constant, and it affects everything from walking to simply holding onto objects. Light sensitivity —Cloudy days are worse than sunny ones, and sunglasses aren’t just a fashion choice; they’re a necessity. Misunderstanding from others —Most people think I’ve made a “full recovery” because my deficits aren’t obvious. But inside, I know I’m still adapting every day. The Emotional Side of Recovery One of the biggest struggles with living with invisible stroke deficits is the feeling of not being understood. How do you explain to someone that you’re exhausted but haven’t “done” anything? Or that you need to stop walking because your brain is tired, not your legs? It’s something I’ve learned to navigate over the years. Sometimes, I give the easy answer: “I’m doing well.” Other times, if the person is willing to listen, I share more. And when I really need to be heard, I turn to counseling or the stroke survivor community—because we get each other in a way that no one else can. Shifting My Perspective on Recovery Early on, I thought recovery meant going back to the way things were before my stroke. I believed that if I worked hard enough, I could erase all traces of what happened. Now, I see recovery differently. I’m fully healed, but with scars. My brain has adapted, my body has adjusted, and I’ve found ways to keep moving forward. But I will always carry the impact of my stroke with me. And that’s okay. What’s Next? After seeing the response to my video, I realize how important it is to continue these conversations. Many survivors feel isolated in their struggles, believing they are alone in their experiences. I want to change that. I’ll be creating more content that sheds light on these invisible aspects of stroke recovery—so that no one feels like they have to navigate this journey alone. If you’re a stroke survivor (or know someone who is), I’d love to hear from you. What are some of the invisible challenges you’ve faced in your recovery? Let’s start a conversation. Want more insights? Listen to the Recovery After Stroke Podcast – New episodes every Monday. Check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened , for a deeper dive into stroke recovery and post-traumatic growth. Support The Recovery After Stroke Podcast Through Patreon Grab A Copy Of The Book Transcript: Bill Gasiamis 0:00 I realize that I do a lot of talking about stroke recovery on the podcast with people, and I share a little bit of my story there. It’s where people hear what I’ve got to say, but it’s always broken up in a way where they don’t get the full picture. And that’s not a bad thing in the podcast, because the podcast is about the other person. But I wanted to share a little bit about my journey with stroke recovery. Bill Gasiamis 0:30 Let me just put the alarm on as I head out, because the people that I come across often assume that my stroke condition is not that bad, and sometimes it’s an issue that they think that perhaps they should be at My stage of their stroke recovery, and they should be there really quickly. Bill Gasiamis 1:04 But I’ve been on this journey since 2012 and when I’m recording this, it’s just past the 13-year mark in 2025 so today has been an interesting day, and I’m at home, and I’m doing the kind of work that somebody might do in an office. So I’ve taken a step back from my property maintenance business. Bill Gasiamis 1:38 Instead of being on the tools I’ve I’ve taken an administrative role where I try to ensure that the guys that work with me have an ample amount of work to keep them busy full time. One of them is my son. The other one is my business partner. Bill Gasiamis 1:58 We’re a proper small business you know, we don’t turn over multiple millions of dollars a year. We turn over enough money to keep everyone employed and earning a decent living. So my job is to be at home and be productive. And today, I’m feeling really guilty because I haven’t been productive at all, haven’t managed to get any work done, because I woke up feeling fatigued, like I can’t concentrate. Bill Gasiamis 2:29 And no matter how much time I spend in front of the computer trying to get the work done, what’s happening is I’m falling asleep in front of the computer, and my brain is hurting me. You know that hurt that stroke survivors describe, which is not real pain, but it’s kind of like a strange pain, and it hurts because I can’t describe it any other way. I don’t know how to describe it. Bill Gasiamis 3:00 It’s a feeling of overwhelm. It’s a feeling that sort of starts in the back of the eyes and takes over the entire head. And I don’t know, I don’t know what the point of it is, other than to tell me that I shouldn’t be doing that work, but that’s what I’m employed to do. That’s what I’m supposed to do, not rest, and after 13 years I’m not earning a decent income, I want to be in a position where I can catch up a little bit on the income that I haven’t received while I’ve been unwell, recovering from three brain injuries and brain surgery and then learning how to walk again. Bill Gasiamis 3:44 So it’s an interesting thing to experience, and I haven’t really been able to get my head around it, and I haven’t been able to work out what to do so that I don’t feel bad when I’m finding fatigue, I know what I should do, like I tell people that on the podcast, I encourage people all the time to not be hard on themselves, etc. But look, it also happens to me, and I can’t always be positive. Bill Gasiamis 4:13 I maybe can be on the podcast to an extent, because we’re trying to motivate people and encourage people, but it’s not possible for me to always be in a positive mindset. It’s quite sunny out here today, so I hope you don’t mind me wearing my sunglasses. The Sun is Also something that overwhelms my brain and can create neurological problems, so sunglasses are very important. I found that sunglasses are really important even on cloudy days. Bill Gasiamis 4:49 In fact, they’re more important on cloudy days because somehow the way the light reflects through the clouds really fits. Eggs my brain. So instead of sitting in front of the computer and getting nothing done, I thought I’d be productive and go for a walk and take you guys with me and just share a few things that I’ve been experiencing. Bill Gasiamis 5:18 One of the challenges I face is that people assume that I’m fully recovered because I don’t look like someone who had a stroke, and typically I walk, quote, unquote, like a normal person. And while that’s definitely a good thing, and I’m grateful for that, it’s really hard to describe to people what I’m going through. Bill Gasiamis 5:40 It’s really hard to tell them what it feels like to be me, and not that I need people to know, to feel sorry for me or anything like that, but I definitely need to tell them when I’m not up to doing something, or I’m not in a position to participate in an activity or a sport, in something as enthusiastically as they would want to participate in it. Bill Gasiamis 6:15 Now I’m walking now, and every step, every step I take, I can feel my left leg on the ground, barely through the shoes, but it refers all the way like it’s so tight on that left side because of spasticity and because of the way that the muscles these days, it’s so tight that I can feel the walking in the back of my head like just in this space here in the back of my head. Bill Gasiamis 6:53 And it’s really bizarre because I don’t know what to do about that, other than to just experience it. And then how do you explain that to somebody when you’re walking? When you’re walking? I can feel each step in the back of my head when I’m walking, that creates more fatigue, requires more energy, and that makes walking harder. Bill Gasiamis 7:15 Because I never noticed that on my other side. I never noticed that before the stroke. I notice it now, and it’s a really weird thing to notice. And then my left side feels like it’s already done 20 laps of this block that I’m going to walk, but my right side doesn’t feel like it’s even started. And there’s always that imbalance that I experience the imbalance between how my left side feels and how my right side feels, and am always trying to get my head around it, and sometimes I have to tell my left side I don’t believe you. Bill Gasiamis 7:53 You are not tired. You are just you just think you tired. You’re fake tired because the right side is not tired because we haven’t done enough to be tired. So you are not tired, so you have to keep going. Even if it hurts, you have to keep going. And that tends to work for me. Bill Gasiamis 8:17 The recovery afterward isn’t too bad, but it doesn’t make things like walking that enjoyable, and I look for excuses to stop doing it, especially on warm days, where the weather makes it a little bit harder under normal conditions, for “normal” people to walk. So it’s really interesting. Bill Gasiamis 8:46 One of the other challenges that I have is that when people don’t get you, they don’t understand how you feel after a stroke. The only way they’ll ever understand how you feel is if they go through something similar, and let’s face it, that’s not what we want people to do. We don’t want them to feel what we feel. Bill Gasiamis 9:12 I mean, you wouldn’t wish a stroke on your worst enemy. Why would you want people to feel how you feel so that just they can understand you if you’ve it’s a problem when you’ve felt you’ve been misunderstood in the past, when you thought that people don’t understand you like it’s one of those things that we all go through from time to time, I feel misunderstood, or people don’t understand me, or I can’t explain to people what’s going on in my mind. Bill Gasiamis 9:39 And then, if you felt like that under normal conditions, it’s pretty common for you to feel that way after a stroke. Not only were you misunderstood before, but now, you have even less, way, even less chance of explaining to people how you feel, and it’s a bit of a problem for you. Bill Gasiamis 10:02 So I find myself dealing with it in a couple of different ways. Sometimes I won’t engage in a conversation with somebody who asks me about how I feel, or who assumes that I’m great because I look okay. I just don’t go into the conversation too deeply. And I answer questions generally, I’ll say things like, if they ask me how I am, I’ll say things like, I’m okay, and if they ask me how you’re going after the stroke, I always say, I’m okay and I’m doing really well, and I’ve recovered really well. Bill Gasiamis 10:34 But I don’t go into too much detail, because that’s really what they want to hear. They don’t really want to hear anything else. They just want to hear that I’m okay and that I’m doing well, and that kind of allays the concerns that they have about me, and I don’t want people to be concerned about me. Bill Gasiamis 10:53 Everyone goes through something difficult in their life, so I’m no different, I don’t think you can get through life without going through difficult things you would nobody comes out of life unscathed. So I think it’s okay for me to just tell people that I’m okay and leave it at that. Now other times, if it’s the right person, I go into a bit of detail. Bill Gasiamis 11:16 We might have a little bit of a heart-to-heart or a deep and meaningful and that’s good because that’s also necessary having a heart-to-heart and a deep and meaningful from time to time. And I love doing that with the right people. And when you do that, it’s a good release. But I’ve got to pick the people that I do that with because some are not equipped to have deep and meaningful and Heart to Heart conversations. Bill Gasiamis 11:45 So I try not to burden people, the wrong people, with too much information, and that seems to be fair to them and fair to me because it takes a lot of energy for me to explain what I go through, and if it’s lending landing on deaf ears, well, there’s no point in that. Bill Gasiamis 12:04 There’s no point taking people through that type of a conversation when they’re not really interested, or when they’re afraid to be interested, or it makes them question their own mortality, or their own health, or ill health, or all sorts of things. So sometimes that’s the approach I take, and other times I just seek out counseling. Bill Gasiamis 12:28 I go to people who are paid to sit there with me for an hour to listen to what I got to say, without judgment, without advice, without opinions, and just to let me vent and get it off my chest. So I find that to be really helpful also, but that’s not something I do all the time. I used to go to counseling once a month, and I found myself doing that less and less these days. Bill Gasiamis 13:03 And that’s not a good thing or a bad thing. It’s just the need has decreased, so I go less often. If the need increases, I’ll go more and I’ll do more counseling, and that’s okay. I had a massive wake-up call, a couple of well, almost nine months ago now, because of my deficits on my left side and the numbness and the tingling and the way that the left side feels and the way that it fatigues, I was at work and I climbed on the ladder because we installed the scaffold at this particular job we were doing to make sure that the job was safe so nobody had any falls off the ladder. Bill Gasiamis 13:47 I was climbing the ladder to the first level of the scaffold to do a little job at the end of the day. And I was really tired and fatigued. And I was holding a paintbrush and a paint bucket with one hand, which is something I always do, and I was climbing up with the other hand, and it wasn’t far to go. It was only three or four rungs, and I was going to place the paintbrush and the bucket on the landing and continue climbing up the rest of the way. Bill Gasiamis 14:16 And then what happened was, as I was doing that I was getting a little bit higher to just sneak above the landing and place my brush down my left hand and let go of the ladder without me realizing, and I’m kind of smiling and laughing about it now. Was no laughing matter, let me tell you. Bill Gasiamis 14:37 What happened was I ended up falling backward onto a metal bar of the scaffold, and I hurt my back. I really hit my back hard, and then from the middle bar that I hit, I had about another three feet or a meter to go further down to the ground and land flat on my back on the deck. And. So I hit my back about a meter off the ground, and then I hit it again on the ground, and let me tell you, it wasn’t pleasant, and I was bruised and battered, and I didn’t know how I got down there, and I was a bit winded, and it took more than three weeks to recover. Bill Gasiamis 15:19 Thankfully, I didn’t break anything, but it was a big wake-up call, because my left hand decided to let go, and I had no say in the matter. And that’s one side of my deficits that people don’t see. I also dropped a lot of things on my left side because of the same reason. So it was very interesting to experience that and get away with it. Wow, it was really good to get away with it. I mean, a lot of people don’t get away with that. Bill Gasiamis 15:53 I know people who have injured themselves far worse falling from smaller heights off of ladders than I did. So I am very grateful, you know? This brings me to the point of my definition of my recovery, you know what? When I say I’ve recovered to people now, what does that mean? I’ve changed my definition initially. I thought the recovery should be something that happens fully. Bill Gasiamis 16:23 I go back to who I was before the stroke. Now, not the ill-informed version of me before the stroke, not the guy who smoked and drank and did all of that, but you know, before my deficits existed and before the blood vessel burst where I was oblivious of what it was like to need to know how to walk, to pay attention to every step, to feel the step that I’m taking in the back of my head, you know, to feel the wind on a cold day hurting my skin, and to feel annoyed when my wife touches my left hand because she’s being nice, and all I can feel is burning and irritation. Bill Gasiamis 17:09 I thought that that’s what I was going to do. I thought I was going to go back to normal, and then you hear about this new normal that you have to accept, and that’s kind of where I am at. I’ve accepted this new normal where I am fully healthy because the blood vessels in my brain don’t exist anymore, the one that bled will not bleed again, and the risk of me having another stroke has dropped dramatically. Bill Gasiamis 17:38 So that’s a good thing, which means I’m healthy, I’m fully out of the woods with that part of the situation, but I am still living with these deficits. And these deficits are just part of everyday life, and they don’t go away. And when I wake up in the morning, they’re always there, even though I might forget that they’re always there. Bill Gasiamis 18:05 They are always there. Let me just show you this on my walk. Look at this amazing orange door. Well, that’s beautiful. This is my neighborhood, so I think that’s one new definition of recovered. Fully recovered is My body feels like this. It’s always going to feel like this. It’s never going to change. Some days it feels worse, other days it feels better. And when it’s feeling worse, I need to attend to it, I need to rest, I need to get more sleep, I need to do fewer activities. Bill Gasiamis 18:45 And perhaps I need to go and get a massage and make sure that the muscles are released and that I do some self-care. So, yeah, I’m fully healed, but with scars, that’s it. That’s the best way to describe it, fully healed with scars. And it’s no different to somebody being fully capable of living a regular life with a knee injury or an elbow injury or missing a limb, or whatever their injury is that they’ve had to live with their entire life. Bill Gasiamis 19:30 So, yeah, I’m fully healed. People always ask me for advice. I get a lot of requests for advice. What do I do now, any tips for this and any tips for that? And it’s like my stroke is so different to yours, and I’m such a different person than you that making those types of comments are probably not helpful, although I understand why people asks. Bill Gasiamis 20:00 They want some guidance, and they want to decrease the amount of time that it takes for them to go through their recovery. So I do have some tips to offer people, and that’s be curious about what you need to do next to improve your recovery. Always learn, never stop learning. Spend as much time as you possibly can learning about what you need, specifically for your body and your stroke and your brain and your injury to recover and get better, because you’re the person who has to be responsible for that recovery. Bill Gasiamis 20:46 You’re the person who has to be in charge of it, even though it’s hard, and even though you’re dealing with an injured brain, and even though you don’t have all the resources you need to find ways to deal with your own version of your injury and your own version of your recovery. Bill Gasiamis 21:14 Be kind to yourself, and I suppose that’s a reminder for me as well, is to be kind to myself, and when computer productivity is not possible, come out and be productive in another way, because it’s a real, big desire of mine to be productive, and this is helping me overcome that issue that I’ve had about, what about my productivity or lack thereof on certain days when the fatigue is against me and when stroke is doing what it does, rather than me doing what I do, rather than me taking charge of my particular day or my life when stroke takes charge. Bill Gasiamis 22:07 Find a way to do a work around. Find a way to achieve your goals in a slightly different way. Anyway, I hope you found this little walking vlog insightful and thanks for listening. If you like this type of content, subscribe, leave a comment below, and if you are interested in episodes from stroke survivors sharing their journey on the recovery after stroke podcast . Bill Gasiamis 22:43 New episode comes out every Monday, and there are interviews with people who have had a stroke and want to share their story in the hopes that they will help somebody. But they also find the interviews that we do cathartic, just like I do, they really help. The post Living with Invisible Stroke Deficits: The Challenges No One Sees appeared first on Recovery After Stroke .…

Recovery After Stroke

1
The Hidden Struggle of Speech After Stroke: A Musician’s Story 1:45:40

5 дней назад1:45:40

1:45:40

Finding Your Voice After Stroke: A Musician’s Journey Through Aphasia and Recovery Recovering speech after a stroke can be a long and frustrating journey. For many stroke survivors, Aphasia—a condition that affects speech and language abilities—becomes one of the biggest hurdles in rehabilitation. But is it possible to regain speech and rebuild confidence in communication? Graham Hall, a professional musician, faced this exact challenge after his ischemic stroke left him struggling to form words and recognize his own voice. His story sheds light on the emotional, mental, and physical challenges of Aphasia while offering hope and actionable strategies for stroke survivors working to regain speech. Understanding Stroke and Speech Challenges When a stroke affects the left side of the brain, it can disrupt the areas responsible for speech and language. This can lead to Aphasia, causing: Difficulty forming words or sentences Trouble understanding speech Problems with reading and writing Inability to recognize familiar sounds or voices Graham’s stroke affected his ability to speak fluently. He described feeling disconnected from his own voice as if what he said wasn’t quite right. Like many stroke survivors, he also faced mental fatigue, as every word required extra effort to process and express. The Mental Fatigue of Regaining Speech For Graham, every conversation felt like double the work—first thinking of the words, then questioning whether they were correct. This constant mental effort caused exhaustion. “Even though my speech is much better than it was, it’s still mentally and physically draining.” This is common for stroke survivors with speech deficits. The brain works hard to reroute neural pathways, using neuroplasticity to regain lost abilities. But this process is tiring and requires consistent practice to improve. Tips to Reduce Speech Fatigue: Take breaks between conversations to allow your brain to rest. Speak slowly and focus on clear pronunciation. Use assistive tools like text-to-speech apps or visual cues. Engage in speech therapy exercises daily to strengthen language skills. Practice mindfulness and relaxation techniques to reduce stress. Why Some Words Are Harder to Say After Stroke A surprising challenge for Graham was spelling and recalling words without visual representation. For example, he found it easy to spell “ball” because he could visualize it, but he struggled with abstract words like “done” or “jury” because they didn’t have clear images in his mind. This is because the brain processes visual and language information together. When speech is impaired, having a mental image of a word can help in recalling and pronouncing it. How to Improve Word Recall: Use association techniques – Link a difficult word to an image or memory. Write words repeatedly – Handwriting strengthens connections in the brain. Read aloud daily – This helps reinforce word formation and recognition. Use rhythm and music – Singing words can be easier than speaking them. Graham used musical techniques like rhyming and rhythm to retrain his speech patterns, tapping into his past skills as a musician to help his recovery. The Emotional Toll of Speech Loss After Stroke For many stroke survivors, speech challenges lead to frustration, isolation, and loss of confidence. Graham shared that some friends drifted away because conversations became difficult. “Some people stopped talking to me. Maybe they didn’t know how to interact with me anymore.” This is a common experience, but it doesn’t mean stroke survivors should give up on communication. Building a supportive environment is crucial for speech recovery. How to Overcome Social Barriers in Speech Recovery: Be patient with yourself – Progress takes time, and small improvements matter. Educate others about Aphasia – Many people don’t understand it. Help them learn. Join a support group – Connecting with other stroke survivors can boost confidence. Practice speaking daily – Even small conversations help strengthen speech abilities. Use alternative communication methods – Gestures, writing, or assistive apps can help. The Role of Neuroplasticity in Speech Recovery Neuroplasticity is the brain’s ability to rewire itself after injury. This is why stroke survivors can regain lost abilities with practice. Speech recovery doesn’t stop after a few months—it can continue for years. Graham emphasized that consistency is key: “If you don’t practice, your speech will get worse. You have to keep going, every day.” Even 14 years after his stroke, he continues to practice and refine his speech. Best Practices for Speech Recovery Using Neuroplasticity: Daily speech therapy exercises – Apps like Tactus Therapy or Speech Assistant can help. Reading and repeating words – Reinforces memory and pronunciation. Conversational practice – Engage in slow, structured conversations. Listening to familiar voices – Helps reconnect brain pathways. Using music and rhythm – Singing helps retrain speech patterns. Aphasia Recovery: What Graham Wants Other Stroke Survivors to Know Graham’s story highlights an important truth: speech recovery is a journey, not a destination. It’s a process of constant learning, practice, and adaptation. Here’s his advice for others struggling with speech after a stroke: Never stop practicing – Even if progress feels slow, keep going. Find what works for you – Whether it’s music, writing, or visual cues, use what helps. Be patient – Speech recovery is mentally exhausting, but improvement is possible. Stay connected – Don’t let communication barriers stop you from engaging with others. Final Thoughts: You Are More Than Your Speech Challenges Losing the ability to communicate after a stroke can feel devastating, but it doesn’t define you. As Graham’s story shows, with persistence and the right strategies, it is possible to rebuild speech, confidence, and connection. If you or a loved one are on this journey, know that you are not alone. Stroke recovery is about progress, not perfection. Keep practicing, stay patient, and surround yourself with people who support you. Finding Your Voice After Stroke: A Musician’s Journey Through Aphasia and Recovery After his stroke, musician Graham Hall struggled with speech. In this inspiring story, he shares his journey through Aphasia and recovery. Graham Hall’s Websites: ghmusicprep.com grahamhall.bandcamp.com LinkedIn Highlights: 00:00 Graham Hall’s Introduction and Background 04:13 Graham’s Stroke Experience 14:07 Challenges of Aphasia and Therapy 23:15 Impact of Stroke on Daily Life and Relationships 26:47 Adapting to New Roles and Passions 35:20 Precision, Passion, and the Orchestra’s Role 43:54 The Power of Music 52:52 Overcoming Spatial Challenges in Music After Stroke 1:05:01 The Role of Music in Recovery 1:24:38 Lessons Learned from Stroke 1:30:55 Advice for Other Stroke Survivors 1:35:21 Final Thoughts and Reflections Transcript: Graham Hall’s Introduction and Background Bill Gasiamis 0:00 Hello everyone, and welcome to another episode of the Recovery After Stroke Podcast , whether you’re tuning in on YouTube, Apple Podcast, Spotify, or anywhere else, thank you for being here. Your support makes these conversations possible, and I truly appreciate it. Before we dive into today’s episode, I wanted to give a shout out to Kim, our latest Patreon supporter. Your contribution, Kim, helps keep this podcast running and reach more stroke survivors. Today, we have a fascinating conversation with Graham Hall. Bill Gasiamis 0:33 A professional musician whose life changed when he experienced a stroke that left him with aphasia. He opens up about the mental fatigue of communication, how he adapted his speech recovery using music, and what it feels like when you can’t recognize your own voice anymore. Bill Gasiamis 0:51 And for those of you watching on YouTube, our channel is growing fast. 320 new subscribers roughly every month, and we’re on track to hit 5000 subscribers in under a month. If you’re new, make sure to subscribe and be a part of the growing community. Now, let’s get into Graham’s incredible journey. Graham Hall, welcome to the podcast. Graham Hall 1:18 Hi, Bill. It’s good to see you, actually, and to hear you, because your head, who has been my mind for the last, well, actually since 6 years, I think, when did you start this podcast. Bill Gasiamis 1:34 You know what, I started, I think I made the most effort in the podcast, probably after 2015, 2016 something like that. And it really, yeah, it really took off, probably after 2017, 2018 somewhere there. Graham Hall 1:54 I was a podcast. It was a Google podcast on or Google sounds, or that, as it was then, and I think I found your show by that, because you have a conversation with Mike Mezenich, and Peter Levine, so that sort of timeline. Bill Gasiamis 2:25 Mike Mezenich was an amazing interview. I met Mike in Melbourne and asked him if he would be on my podcast. And he said, Yes. That was very early, and he was great. Peter Levine passed away a couple of years ago. Graham Hall 2:45 Yeah, I heard that, yeah. I’ve got the second version of his book. Because the third version, I think it was, which I’ve got the hardback version of that really good book, actually an easy read, but it’s quite brilliant, but all the information was there for me to read and think about what’s happened. Bill Gasiamis 3:17 Yeah, as somebody who was helping stroke survivors, his book was so well written, and he was so knowledgeable, he understood things that so many people who work with stroke survivors and haven’t had a stroke don’t understand. And I found his interview really fascinating. Graham Hall 3:42 Yeah, and because, I think what was interesting is because he was a drummer, which is me, so and some of the things he said about how the brain works and the music and how now, particularly, our drummers can sort really great damage for me now, it was helpful, it’s great. Graham’s Stroke Experience Bill Gasiamis 4:13 Actually, tell me a little bit about what happened to you. Graham Hall 4:18 Well, it’s 10 years ago, just over 10 years and I just woke up and I had a stroke. I don’t know whether it happened whilst I was sleeping, but I awoke and I can’t talk, and felt in the fall. But the ambulance was there quite quickly into the local hospital. And therefore, two weeks, three weeks, and it just a boot cut, my left clotted artery, and they think it’s because merely a slight high level of cholesterol, but nothing. I’d never smoke, never drunk. It’s just bad luck, I guess. Bill Gasiamis 5:37 Yeah, to me, fair enough that could be the case also. So I can tell by the way that you speak that there is some kind of deficit there. When you left hospital, what were the deficits that you had to recover from and deal with? Graham Hall 6:00 Well, it was obviously the problem. Everything was my right side, but it gets better and better actually, obviously physical therapy in the hospital and afterwards, but for aphasia and therapy. I did that for seven months, which is a I actually mean I say that it was only two or three days a week for five months, and it gladly goes less and stopped after 6, 7, 8 months. And actually, the guy, the woman, is languishing therapy, a woman was fantastic, actually, and I don’t think, from what I heard now, that will happen, that will not happen now in England. Graham Hall 7:07 Now, with that sort of length of therapy, maybe two weeks, maybe a month, and then, because funding, it gives less and less and less. No, I was quite lucky, really at that time. But because, my free life, and still I get was a drummer. I used to work for a opera company in Leeds called North, and I was there. I started them in 93 actually, four time. And so quite helpful to help me get back to some playing. So it was off work for six months, and then gradually, sort of small concerts. Or rehearsals, but I decided to stop. Graham Hall 7:07 Not because I didn’t enjoy being in the environments of Opera North as I didn’t get enjoyment by playing for music. And it was strange, because the first time I was back trying to find back, there was a kids concert, school concert, and there’s a rehearsal there. And of course, when you’re playing percussion, you got to move left to right and loud and soft. And that was quite hard, really, because I couldn’t find which side of the the stage will be the bass drum or the symbols. Graham Hall 9:30 But everyone was liking the fact they were playing. But it takes, what? Why? Why do I not like now? Because before it was my like, from 14 of age, I like music. It. Is my life. And then suddenly there was, there was no enjoyment, no from the the music itself. I mean, I heard it quite clearly, and I know where it could be and stop until like that, and then it was a conductor and queuing, this is like that, but there’s no job by playing it. Bill Gasiamis 10:36 I just wanted to take a moment to say thank you to all our podcast listeners, whether you’re on a morning walk in the car or relaxing at home, I appreciate you being a part of this journey. If you’re finding value in the conversation. Here are a few ways you can stay connected and support the show. Join the conversation in the YouTube comments, there are many stroke survivors and caregivers there sharing insights and asking great questions. Bill Gasiamis 11:07 Check out Graham’s work at ghmusicprep.com and grahamhall.bandcamp.com, he has created some amazing music inspired by his experience with aphasia. You’ll find links later on in the show notes. Also, you can support the podcast on Patreon, just like Kim did. Your support will help keep the content coming and provides resources for the stroke community. All right, let’s get back to Graham’s story. So you lost your passion? Graham Hall 11:45 Not the passion, because I’m still, obviously, I’m still working with music, and I’ve played since then, obviously, and actually, before lockdown stopped, started. There was a season where they did a opera called La Boheme by Bucha. So I played the part I was playing for 30 years this production use was played every two or three years. Graham Hall 12:26 So I played in the pit, playing off stage and and marching into the stage, going back to the stage, doing some bells going back, and because I’ve done that, I knew exactly where everything should be, but when I played, there was no feedback for how that sound would be heard by anyone to do that, so I got to check that they could sing, “Is that correct?” “Yes, that’s fine.” But I can’t get that feedback to sensory feedback, I guess from the actual name. Bill Gasiamis 13:21 I’m getting the feedback from the instrument when you’re playing, and therefore you can’t experience the feeling of whether you’re nailed it or not. Graham Hall 13:34 Yeah. I mean, I think, and actually, when lockdown was just stopped, there’s some rehearsals. Rather, you’d be with everyone played about six feet away from each other, because of lockdown. You’ve got the screens looked like that because of COVID. And I think I was talking to them, and say,well, that you’ll say, well, that’s hard for them to play with people five feet away. Stroke and Speech: Challenges of Aphasia and Therapy Graham Hall 14:07 But I was saying “Well, that’s exactly what’s happened to me.” Even though you’re playing next to me, there’s something, there’s like a booth going in there. But, yeah, so it was a way of making sense of what’s happened to me, I guess. Bill Gasiamis 14:32 Yeah. Do you feel like it’s a vision? Is it a physical disconnect? Is it an auditory disconnect? Graham Hall 14:41 No, it’s all, it’s audit all the time. Yeah, I mean, because aphasia is just, that’s what it is. It’s the auditory problem, I have the deficits. So even though, when I talk to you now, I don’t think that my voice is clear to me. Bill Gasiamis 15:06 So your voice when you hear it in your own head as you’re speaking, sounds unfamiliar. Graham Hall 15:16 A bit, yeah. I was talking to some student doctors 50 days ago about aphasia and I said “Well, it’s hard for me to to say what’s happened to me.” Because I’m not sure whether the words I’m saying is correct every second I’ve got to rethink what I’ve just said, and then it goes on and on. Now it’s it comes a bit better, but in the earlier days and early years, I’ve got to rewind what I’ve just tried to say. Does that makes sense? Bill Gasiamis 16:02 Yeah, everybody, yeah. It sounds like you’re doing twice the work once to develop the sentence, and then you’re saying the sentence, but then you’re also questioning the sentence. Graham Hall 16:17 Yeah, exactly. And I always question everything I’ve seen actually, although it feels a bit easier and more automatic, I guess, but it’s, it’s still, as I say, it’s quite it’s physically and mentally. But it’s mentally and physically fatigued by it. If that makes sense. So it’s no problem with the physical side of it. But of course, you know, as I always know now. Graham Hall 17:07 That even though you’re not talking, the brain is always working and then you got to make sure that you’re not going to have some time to not think about it at all. Otherwise you can’t stop, but the brain doesn’t want to stop. Bill Gasiamis 17:30 So it’s a cognitive challenge that you face. You’re facing that you’re trying to give the brain less work to do, but it’s wanting to do it, and that, in turn, creates more fatigue, because you’re doing double the work to get one line out or one sentence out or a conversation out. Graham Hall 17:57 Yeah, I mean, I talked to the student doctors two days ago for a morning session, but when I get home, that was just wiped out new to be, which is great, because it’s good for me to talk to other people about aphasia, because doctors actually, all these student doctors, they’ve never really heard about it. I mean, they heard of aphasia a bit, and they called it Dysphasia. What was the word that was, it’s American term. Bill Gasiamis 18:45 Dysphasia. Graham Hall 18:47 Yeah, dysphasia, but again they don’t know anything more than that word, they don’t know how many types of aphasia, it’s just like that. Bill Gasiamis 19:08 It’s so complex. Aphasia is so complex, and it’s interesting to come across people that have experienced aphasia in different ways. Some people you couldn’t tell that they have aphasia, but they will tell you that concentrating on a conversation is difficult. And then there’s the people who are very early on in their recovery. I imagine that you would have taken a lot longer to complete a sentence 14 years ago. Graham Hall 19:44 Yeah, although, I for. Bill Gasiamis 19:46 10 years ago. Graham Hall 19:47 Yeah, but I mean every year since then, I’ve done some research on the Manchester University, there’s a department for aphasia and the language disorders in Manchester and in Cambridge. And I’ve done six or seven studies by postgraduate students from different types of problems for the furniture. But all the basic tests are the same, the Boston naming tests and the other one in America, Boston and the other one, anyway. Bill Gasiamis 20:41 So is, as is your aphasia also linked to memory issues, or there’s no memory issues? Graham Hall 20:50 I don’t think it was a memory really, I don’t know exactly. Well, I would say, well, in a sense, it’s just the memory of sound. Bill Gasiamis 21:04 Okay. Graham Hall 21:05 Because, although my speech is much better than it was previous, if I was trying to say a words like, I parked my car right? I parked P, R, A, R, K, E, D. Bill Gasiamis 21:48 Okay. Graham Hall 21:49 So, I know the word is, I know what it means, but I can’t spell that word because I’ve lost the sound of that word. Bill Gasiamis 21:59 I seemed like the word the letter that you were stuck on for the longest amount of time. So you said P, and then you went to R, because A and R do make a sound. So you missed A, and then you went to R, got K, E and D. I see. Okay, so comprehension is not an issue. Memory is not an issue, making the developing or having the ability to discern at that moment the separation between the A and the R, is where the challenge lies, like, there’s a little bit of a kind of a disconnect there. Bill Gasiamis 22:48 And then, with enough time, though you are able to recall that there’s an A after the P and before the R, and then you can combine it. But that is the part where you have to use more cognition to think about, and then that doing that for every word, or every second word or every third word, would make a conversation challenging and tiring. Impact of Stroke And Speech on Daily Life and Relationships Graham Hall 23:14 Yeah, I mean the actual I think my speech is much better than it was, but it’s still the problem with writing or texting, I mean, I put it now, but just a word like, done, D, U N, E, done, well done. There isn’t a visual word for done, and I thought I could do it now, but I used to think my work is done. No idea how to spell with done, and it took me 20 minutes to write done, and like jury, as in the jury with a court. Graham Hall 24:23 The jury, but jury, there’s a J somewhere, and the U, R, Y, but now, and it’s still the problem with small prepositional words, so with have at B, when were is quite WH, so “what” Sounds are particularly hard to get round to it. Bill Gasiamis 25:05 So what I’m hearing as well, I think, is that ball, which is something that you can actually visualize. There you have more reference points to develop the word, because you know what a ball looks like, and you can remember that, and you can attach it to the word, to the letters, and then you can say that, but “Done.” There isn’t an image for Done. What does done look like? Bill Gasiamis 25:39 And therefore you haven’t got the visual representation of the word that you can quickly associate attached to the sound, and then also, Jury the J doesn’t sound like a J. It can sound like a D. It can sound like a D, depending on which part of the world you’re from and therefore it kind of throws a little spanner in the works there about the way the word is developed in your mind before you express it in words. Graham Hall 26:14 I mean, the way I do it round is by like done. I’ll say son, and they were stunned. Well, not because Sun done, so, Sun Done Fun, trying to get away to say D, Q, N or A, N, given by the word. Bill Gasiamis 26:43 So the work around a little longer. Adapting to New Roles and Passions Graham Hall 26:47 Yes, but I always like before stroke. I always like rhyming words. So people like and people white, and people write songs like Tom LEHRER And Stephen Sondheim, and wordsmiths like that level. So I was quite happy to find new words, new rhymes or other old songs. So by using that, I can use my new life to make it sense to making by having my old skills, if you like, particularly my new life. Bill Gasiamis 27:47 Since you adapted your old ability into supporting the new way that talking occurs for you. Graham Hall 27:59 Yeah, and I think with any brain damage it is, you’ve got to find a way of coping with your life, and if you can use your old skills, maybe in a slightly different way, then you matter, you’ve got a way up to getting better, rather than stop, but not in from scratch for a new project, or an old a new job. Can use the old skills put it into a newer and a new life, I think, right? And actually, even because my stroke happened. Graham Hall 28:52 I talked to my manager at Upper North, and I was talking to her about whether it’s stopping playing. And moving into the music preparation side of life, like arranging, constructing, not arranging, and orchestrating and being some library works like that. So I was thinking doing that anyway, and then the stroke happens, and it sort of says “Well, you might do that anyway.” Bill Gasiamis 29:30 So the stroke forced your hand, so to speak, into this new decision that you were thinking about making anyway. Graham Hall 29:39 Yeah, the only thing was that I didn’t want to, I don’t think I would. I didn’t think I was not playing as much as I was before. That was the downside of it, I guess. But you know, music is music, and it helps everyone because the brain damage has helped get music in your life at some point, it’s just that, just I’m not I’m not any from playing with an orchestra anymore in a band. Bill Gasiamis 30:20 A bit earlier, you you mentioned that during therapy it took 20 minutes to get the word “done” out. Now, early on, that must have been excruciating, and pardon me, if it wasn’t, but for me, it seems like it may have been giving you, or was it great for them to give you the space to get there after 20 minutes? Bill Gasiamis 30:48 What’s it like sitting through those tests where the word “done” would have just come out before, quite easily, and then you had the stroke, and now you’re rehabilitating yourself, also now you’re getting rehabilitated. What’s it like to sit there through 20 minutes of trying to get to a single word? Graham Hall 31:08 Well, I think because as a that level of playing of a musician, I like practice, so it doesn’t matter if it takes an hour or 10 minutes or whatever it is to make the end product, and even then, I’m always practicing with my speech and lack words and language. So it’s not problem, actually. And actually, of course, the “why I’m still here” of course, is because my wife, because she works with me, and also she’s a musician as well. So she knows how that works, how the brain, how the music helps other people. So there was no problem at home for that, really. Graham Hall 32:11 And so it’s, I just making sure that was got the space and the time to do it, and the only thing that was the Speech and Language Therapists, was hard for them is because I used to be more practice, not only 10 an hour a day or two hours a week as that. You can’t do that, you got to be every single day. Graham Hall 32:49 Our movement second, and I think they were quite a backed by that, because people just use their examples of Word, finding yourself until, well, you got an hour to do that, or three hours a day, or four hours a week. You can’t do that, you gotta say more and more and more to me. Bill Gasiamis 33:25 So you’re a drummer, a drummer drums all day, every day, to get to right, to get to La Boheme, and to be able to be, you know, tight in your set you go, you have to practice all the time. So what you’re thinking is you can’t just practice for one hour to recover. Graham Hall 33:43 No, you can’t. Bill Gasiamis 33:44 You have to practice way more than that. Okay, I love that. Graham Hall 33:48 Yeah, you can’t, you can’t do that. It’s just, well, it’s in my nature, it’s always been my nature. So it was a teenager, and even though it’s a different way of practice. So be it here, to me. Bill Gasiamis 34:05 It is that kind of thing that you hear people talk about the 10,000 hour rule, you know, to become expert at something, you know, you have to do a minimum of 10,000 hours. Graham Hall 34:19 Yeah, but I mean the old average, with some Papa, the cellist, and he was 90 something. And someone says “So you take years.” Do you see what practice? He says, “Well, I want to get better.” And he was 98, it’s just there. Bill Gasiamis 34:45 Imagine being 98 and thinking you’re not good at cello still. Graham Hall 34:50 Well, yeah, they do. I mean, I don’t think I’ve heard any musician that knows their birth coach. I mean, occasionally, just occasionally, knew a gig and a bar, I think, nailed it, but then the rest of the piece, you think “Oh, God” totally. Bill Gasiamis 35:17 And only you would know. Nobody else would know. Precision, Passion, and the Orchestra’s Role Graham Hall 35:20 Well, yeah, I mean, when an ensemble with a band, with an orchestra, when you make a mistake in your head, maybe you will know there, or maybe the right, the guy sitting next to you might know that that’s be a problem, but the rest of the band won’t work. Or maybe a brass player will know that strong but the violist will not know what was wrong, or the or conductor will know deal was wrong, but everyone else will not will know that was wrong. Bill Gasiamis 35:58 So in the scheme of things, then it doesn’t really matter, because you move on to the next piece, the audience most likely, definitely doesn’t. Graham Hall 36:08 Exactly, yeah. Bill Gasiamis 36:10 Yeah and therefore you guys pulled it off, that’s all that matters. I’ve been to La Boheme and I’ve been to a few other operas, and, I mean, it’s a sensational experience to be there. What’s your favorite piece that you’ve or show that you’ve participated in? Graham Hall 36:33 I think, I mean the opera. Well, actually, I like the music for the opera. The vocal side of it is something that because you’re in the pit and you’re playing in the back of the pit, you don’t hear much singing, which is good sometimes. So you get more the impact from the orchestra sound, not necessarily the full impact where you do it from, from the audience side of it, although, well, now I think about it, there’s an opera by Benjamin Britten called Billy Budd, and in the scene. Graham Hall 37:49 There are four drawers goes into the stage and up a ladder or a blade, and it’s like a battle going on with two ships, and there’s a fire Canyon and everyone and the choruses bring full pelt, and you’ve got two drums, and the sound is fantastic. It goes but it’s that’s quite rare, as it happens, because opera, the orchestra, they also do concert series as well, not just opera. Graham Hall 38:48 So it’s a good well, it was a good fit for me because there’s different types of playing, different types of music going in, you’re not doing the same concert, every opera, every singing, two or three weeks, the different operas, different concerts. I think now I’m quite good that was there. It’s sad that I can’t enjoy it, that I did do it, and that’s gumbo now, and that’s aphasia now. Bill Gasiamis 39:42 Somebody who’s got the type of experience that you have in the type of music and in the work that you’ve done for all those years? Do you have favorite popular bands? Do you have a favorite drummer? Who do you look up to? Up want to be like when you grow up? Graham Hall 40:04 Well, I mean, first drummers. I guess in more jazz drummers would be like Buddy Rich. I guess it’s just not, think around I mean, I was more when I was doing opera, I didn’t like, to hear opera on its own, although I hear it when it was what to rehearse CDs and like that, but driving up and down leads, I use jazz really, I guess, or musicals, particularly so on time. Graham Hall 41:02 I think he’s quite remarkable guy. But, I think all the people I’ve worked for, I can’t think of anyone that you think of one that was quite being a god for that, that the instrument. Bill Gasiamis 41:34 Fair enough. Graham Hall 41:34 Yeah, because they’re always a bit, I’ve been like, Buddy Rich. He’s a fantastic drummer, but he’s an awful manager, and once you know that, you think. Bill Gasiamis 41:54 You mean, never met your heroes, because often disappoint. Graham Hall 42:01 Yeah, it’s there sort of, in a sense. So, what sort of music do you like? Bill Gasiamis 42:15 See, I have my moments. I can sit in the car and put on some classical music, just nothing in particular, just whatever’s on the classic FM on the radio, and really enjoy that. And I’ve been to operas, and we’ve been to theater productions and all that kind of stuff. The only thing I haven’t done that I haven’t seen is ballet, but I would appreciate that at the right when I’m in the right mood, on my cranky days, you know, I like listening to a little bit of, you know, heavy metal, ACDC, Metallica, that type of genre, and, you know, they seem to really move me in a certain direction. Bill Gasiamis 42:58 And they help with, like, exercising something out of my body that needs to get out. But then there are days where I can’t possibly listen to music that’s that challenging, or, you know, that confronted or that heavy and then recently, I’ve been on a little bit of a binge of dance music in the 90s. In the 90s, dance house music was my thing, and now the artists that are putting on dance shows, we’ll call them rave shows or concerts around the world are just amazing, amazing at putting together great sounding dance tracks that really move you. The Power of Music In Stroke And Speech Recovery Bill Gasiamis 43:54 And I suppose I use music to move me in a certain direction, to help my mood, to quiet my mood, to calm me down, right, to lift me, to give me a little bit of, you know, endorphins or or, you know, serotonin or whatever. So I’ve found myself doing that over the years, where I have sessions where I binge a certain genre and then just really use it to move, to help me move in a certain direction or another. And often that can last for a few months or a few weeks, and then I’m not really particularly interested in what I’m listening to, right? Graham Hall 44:50 But the difference, of course, is there’s no sound in this house. There’s never music, I mean, there’s really it was a TV. It was like that, but we never put any CDs, no cassettes, no records. Invoked my records as upstairs stored. Bill Gasiamis 45:10 You or your wife never. Graham Hall 45:13 Yeah, no. Bill Gasiamis 45:16 Industry that you’re involved in. Graham Hall 45:19 Well, yeah, I mean Janet, when she listens to music, when she practice for a sur session, then you’ll hear that. But apart from that, it’s just be low speech, like BBC, poor news, or something like that. But, and actually, I was thinking just before my story, but only since that happened, there’s no music whatsoever. Graham Hall 46:00 The only time I have get music is when I orchestrate or arrange a piece of music for a different orchestra or ensemble, and then I can hear that piece of music, or sometimes I don’t necessarily want to hear the music, because I know what the music is. I’ve got the dots down written there so I can cobble out a tune, a harmony, or make the parts fit for that style, but it’s fine. Bill Gasiamis 46:50 You don’t do the recreational music. You just do music for work or for a given task that you have to do. Graham Hall 47:00 Yeah, because that helps me, I mean, the way the music, how the brain works with music, is just, you’re using all the brain for music. That is a quote, and I can’t find it. Oh, I’ve got it now, I can’t find this thing. Now, apologies for my speech. Graham Hall 47:28 But it says “Musicians brain is the production of music works because of climbing ahead, working memory, decision making, motor control and connect it can eye coordination, memory, long term memory, conception, semantic memory, emotional thinking, control, the control of meaning and space, global and detailed perception, sustained ability.” So that’s what brain is in your brain, how music works in your brain. Well, that’s happening all the time, so you don’t often, don’t necessarily happen to hear it, because the brain is working anyway. Bill Gasiamis 48:29 Yep, so you have a musical brain. Your brain is developing music and feel the music, see the music, experience the music. You know what it looks like. I imagine when you’re developing a new piece or writing or combining the notes together to make a new piece, I imagine you have like an idea of what it should sound like before you, so you can visualize it. So I can relate to that because I can visual, because I have a painting company, and we paint people’s homes, right? I can walk into a house where the client has no idea what to do, how to do it. Bill Gasiamis 49:12 But I can visualize it so I can express to them what they want to hear about, how the house will look before I’ve even attempted to start the job, or before I’ve even won the job. And that sounds like what you can visualize the finished piece, because that’s how your brain works. It already has all the pieces in there, okay. So whereas, and you don’t have a need or a desire to do music for the sake of entertainment, like I do, I do it for the sake of entertainment, okay, and I suppose there are times when I can’t do. Bill Gasiamis 50:00 Either when the sensory overload happens as well. So there is a time where I can be in my car and the moving traffic, and, you know, all the stuff that’s going on for me to get to my destination means that if I have music on, then that’s a really difficult experience. It’s hard for me to drive concentrate, etc, so I switch it off and I drive in silence and I don’t have the radio on either. Bill Gasiamis 50:30 So I’ve never really thought about what role Music plays in my life, but it is very important, especially to experience some of those classic shows, productions, theaters or that have been around for 100 years. You know, Moulin Rouge is a classic example of how going and seeing Moulin Rouge in Melbourne, we went and saw it three times. It was so amazing, and it wasn’t because it was anything different or new. The music was that they use for Moulin Rouge now is more current. Bill Gasiamis 51:22 So they’ve changed the tunes to express the particular scene with more current music. So I can relate to it. But the whole thing, the sound, the lighting, the actors, everything about it, was extremely moving, and that’s what I find it is being there absolutely gives you that clarity, the time where you’re not thinking about anything else, you’re just focusing on that, on that particular moment. Bill Gasiamis 51:55 And it’s kind of meditative. And that’s, I think, what I do with music, I use it as a meditative time where I’m not thinking about other stuff, just the piece, just the heavy metal band, just the dance track, you know, just the classical track that I’m listening to at the time. And I just sucked into it, and I get I’m the kind of guy driving around in the car, moving my hands. Graham Hall 52:25 Because when you win the band or the orchestra, of course, that’s not what happens for them, but the players, right? Because, you know, everyone’s clapping or whooping off that, but the players, then we’ll head down, the notes. Bill Gasiamis 52:44 Work. Graham Hall 52:45 Yeah, that’s fine. Overcoming Spatial Challenges in Music After Stroke Bill Gasiamis 52:52 Other deficits did you have to recover from? Were you dealing with anything more on your right side that was physically challenging as well, when you were picking up those drumsticks for the first time. Graham Hall 53:07 It’s just as the spatial awareness of my left hand, always say, my left hand, become my right hand. It was just with like a looking like a Fiber Phone or rather phone, I will miss a note by two or three, two or three inches away, so I’ve got To mix makes making more visual sense of it, rather than just doing what it is. And because my right foot for like a small kid or something like that, there’s no there’s no power there. So if I did a small bit of kit playing, I just want use the bass drum. I use my left foot for the hi-hat, like a small kit. Graham Hall 54:23 But it’s just the spatial awareness of where things was. It gets better, and it way did get better, actually, and now playing with a band with a tympani Kellogg, which is quite big, and that’s fine doing that. It’s, I can do that, or did do that. But I think what you’re saying about earlier on, it just, it’s not the plane as it when it gets better. It’s just the time it takes to get to the gig, doing the rehearsal, talking to people after the concert, or rehearsals like that, driving back. It’s the periphery of that is harder sometimes than the actual plane, and I guess. Graham Hall 55:32 And then after two or three days, I’ll be wiped out, and they get up and running again. But it comes point to which you say that again to me, I’ve done again now I get a level, which I thought it was after my stroke. I sought good. I’ve got to my plane was better than I thought it would be. But after that, there’s no need to keep going on and on and on. I’m on the last gig was two months ago, and before that was only a year ago. Graham Hall 56:27 So I’m not bothered about playing really, although two a year ago, I did a piece by Leonard Bernstein called the Chase Sister Psalms, which is a small band, although seven percussionists and some strings and chorus and it’s three movements on on Jewish music, and the third movement, there was no playing for me, so I was just playing, listen to it, and I getting up, after 10 years, I got the chills on the back of my neck, briefly for the rehearsal and in the concert. Bill Gasiamis 57:37 Jesus the Chase Sister Psalms, Leonard Bernstein. Graham Hall 58:00 Anyway, but that, was the first time I got the really enjoyment from that thing. It haven’t it happened since then, and in and sometimes I think maybe I don’t want to happen again, because it happens again frequently. I’ll miss what I’ve done before, makes sense? Bill Gasiamis 58:37 So it distracts you from the task at hand? Graham Hall 58:42 Well, yeah, maybe I just, I was quite, I was used now to not that lucky music, and suddenly, that second, I don’t want to hear it again, because otherwise it makes sense. Bill Gasiamis 59:07 It does not make sense at all. Something nice, you liked it, and then you’re like. Graham Hall 59:15 I know, but yeah, but you don’t want to do want to seems strange, because I don’t want to. Bill Gasiamis 59:25 You want to make it about that. You don’t want it to be about that, I suppose, if I’m understanding you correctly, is the enjoyment shouldn’t be the goal, the it seems like the task, getting the sound right, getting it, you know, making sure you play tight is the task, and it sounds like the enjoyment should be like a an afterthought. If it comes, it comes, and I’ll in experience that, that’ll be fine, but it’s not what I’m going for. Graham Hall 59:59 But maybe another thing is, I know, when I was playing before the stroke, I really enjoyed it with the playing of slack that, and I don’t want to be I know it was good to get it happened again, but I’m not used now to being a lower level of. Bill Gasiamis 1:00:24 Aphasia. Graham Hall 1:00:25 Yeah, that’s the word I’m searching for. Bill Gasiamis 1:00:27 Okay, well, I would this is what I would say to you. I would say “Go for it, allow yourself. Allow yourself enjoyment of the of this thing that you do, because what you do brings so much enjoyment to other people. Allow yourself, if you find yourself there, to live in the moment, enjoy it for that time.” Graham Hall 1:00:49 Like, yeah, but I mean, but all the work I’ve done since that’s helped, that’s put enjoyment in other people doing it, by the plane or the orchid or the audience by doing for orchestral pieces or these songs about aphasia, I’ve done for other people to think about how aphasia works and then get feedback from them saying they really enjoyed that and then used to playing it like that, but not from my myself, playing it. Bill Gasiamis 1:01:32 My personal enjoyment. Yeah, look, I understand that it’s a different experience. After the stroke, things are altered, and you’re adjusting to them all the time. And you’ve had this experience, you don’t know what to do with it yet. Yeah, let it work it out, and let it work out, and you’ll find somehow, maybe you will, maybe you won’t. It doesn’t really matter. I don’t think it needs to matter. But I love the fact that you’ve found a little bit of enjoyment out of a piece, and then you thought “Oh, that’s a little bit jarring.” Graham Hall 1:02:16 Yeah, it was quite got, it was just happened, and then again and again, it was again, another, wow, what’s happened? Although I do know what’s happened, but it’s strange, but, yeah, you say I’ve got the enjoyment from other people by playing some arrangements I’ve done and some music, and all the music preparation for other people so they can play piece or not. Bill Gasiamis 1:02:54 I’ve had a look at your website, ghmusicprep.com, lovely pieces on that. I listened to those pieces, and they’re really lovely. That’s about all I can say, because I’m not musically minded, so I don’t know what else to say, other than either enjoyable. Graham Hall 1:03:18 Have you heard the band camp website. Bill Gasiamis 1:03:23 Perhaps I didn’t check that one. By the way, anyone watching and listening, though all these links will be in the show notes, so you’ll be able to find them. Maybe I didn’t go to the band camp one. I went to the website. Graham Hall 1:03:37 But the grahamhall.bandcamp.com, and all these songs about aphasia. So all the music I’ve been arranged or created for different people like but I’ve altered the lyrics to suit the problems with aphasia. So, New York, New York, is short my talk. So it’s, I never heard of this word, but it’s called con progression lyrics. Which it means that the music is exactly it was before, with the chords and the harmony. The only thing that was new is that the lyrics is about, in my case, aphasia. The Role of Music in Stroke And Speech Recovery Bill Gasiamis 1:04:58 Okay, so on Bandcamp, the tracks I see when I click onto the link is the sound of aphasia. The Aphasia and mind, a little neuro music. Graham Hall 1:05:25 I actually that I did it that’s been going on since after my stroke, and it helps me to figure out what’s happened to me with my life with aphasia, but of course, it helps me with my therapy. I hate the word therapy, but it is therapy because rhythm and rhyme, pretty rhyme helps my speech, it’s therapeutic. But yeah, although I hate the word therapy because I mean therapy means there’s be and we’ve stopped, but you never stop. Bill Gasiamis 1:06:17 So like has a negative connotation. Graham Hall 1:06:20 I don’t know why, but it does. Bill Gasiamis 1:06:26 Yeah, although people do say they have been going to therapy for 20 years, like me, psychological therapy, right? I go. I’ve been going for 20 years, so I know what you mean about it, the word can probably be upgraded, or its meaning can be upgraded by now, but I know what, I know what you mean about that word, therapy, counseling to say, instead of therapy, when I go to see somebody, I like to say counseling. Graham Hall 1:07:00 Yeah, that makes it makes sense, actually more than that, but I guess this therapy was not because of your stroke, but you didn’t, you know before. Bill Gasiamis 1:07:15 No before and now and now, because of my stroke as well, and just because of all of the challenges that you know what it is, and it’s even though mine is, you know, psychological therapy, or counseling, or whatever you want to call it my version of therapy. I’ve also done physical therapy, I’ve also done cognitive therapy and other things, you know, in my recovery, or all through the times when I needed it. And I think I’ve stopped seeing it as that as well. Like I don’t really see it as therapy. Bill Gasiamis 1:07:54 I see it as a necessity, something that every human being should be able to do have somebody that they can confide in, consult with, you know, discuss things deeply with, and I think it’s just missing from my circle of family and friends, not that they’re not capable of that, just that they’re not skilled with the task. So I go where the person who is sitting across me is skilled with the task of particularly dealing with my version of seeing life and approaching life and thinking about life. Bill Gasiamis 1:08:34 You know my philosophy, where they can, not judge my philosophy and not even appreciate my philosophy, but allow me to express my philosophy and then challenge me on it. So I suppose it’s more that for me and right I wanted. I wanted physical therapy to be something similar when I went to therapy. I didn’t want to be passive in my therapy, yeah, where they said to me, today, we’re going to walk up and down the stairs, go and walk up and down the stairs. Bill Gasiamis 1:09:06 So yeah, I mean, that’s so passive. I’m just going to come here and do what you tell me. I could do that at home. Yeah, one of the best times that I had at therapy physical therapy was when the therapist asked me “What do I want to achieve?” And I said to him “I want to run, and I don’t want to run marathons or go jogging as a pastime or anything like that. I want to be able to, if necessary, run across the road away from a dangerous situation with a car, that’s it just a safety kind of run if I need to.” And he said “Great, well, let’s work on that.” Bill Gasiamis 1:09:48 And that was a similar approach to me going to my counselor and having a conversation. It’s like, okay, what do we want to talk about today? Well, today I want. Talk about that ah, yeah. And that question. If that question wasn’t asked, What do you want to talk about today? I perhaps wouldn’t have able, been able to talk about that thing with anyone that day. And I don’t think it’s for me, it’s not good to want to talk to somebody about something and not have a person to talk to about, just like, running. Bill Gasiamis 1:10:26 If I want to be able to run across the road, then need, I need to source somebody who’s going to help me run across the road, not tell me to walk up and down a stair. Yeah, do you know what I mean? So in my mind, I’ve I use the word therapy, I suppose, to have a low level conversation with somebody to be able to just express to them where I’m attending, where I’ve attended. Bill Gasiamis 1:10:55 But I’ve, far, I’ve replaced the word therapy many years ago with something else that anymore, and the connotation has gone for me, and I think that’s where some people struggle, is the connotation of the word makes them feel a bit icky about it, and then they avoid getting speech therapy, physical therapy, psychological therapy. They avoid it because it is a little bit icky. I agree there’s something about it, and I think it’s a Hollywood thing. I think Hollywood people have made it icky. Those high level, multi million dollar actors, you know, who? Graham Hall 1:11:41 Yeah, it means the same thing. I hate the word recovery, because recovery means there’ll be an end product, the end game. Bill Gasiamis 1:11:53 So what you want is, you want to denominalize that. You want to add the ing to the end of that word so that you’re recovering. Graham Hall 1:12:01 Recurring or otherwise, causes betterment. Bill Gasiamis 1:12:04 And it’s a forever task. It’s not exactly, because it is. Graham Hall 1:12:11 Yeah, it’s not a temper with my friend and I think because of you and my stroke, there’s always something you can get, get better at. There’s not just a cut up day and say, right, you’re fine. You’re not fine, you’ll never be fine now, and even with, like, even though I work with music, but I’ve got music Adonia, which means not enjoyed music. It doesn’t mean that I want to do music. Graham Hall 1:12:52 And people look at me think, “Well, you must enjoy music” not playing, not hearing it, but I enjoy the process or the preparation of music. And people look pretty simple. It’s a musician you don’t like music. Different types of enjoyment, I guess, of beauty. Bill Gasiamis 1:13:24 Yeah, I hear you. What’s been the hardest thing about stroke for you? Graham Hall 1:13:33 To me, life in general. Bill Gasiamis 1:13:36 Yeah, just what’s something that has as a result of the stroke being the most hardest? Graham Hall 1:13:47 I get speech, I mean, I know, I can’t think anything else. Rather than that, I would like to get my speech as it was. Even though I have low days, which I can’t enunciate as I want to be, and enunciation is quite hard to say, as well as spelling it, I can’t remember to spell it, but it’s just having occasion. I woke up and I think sort of came here to me. Bill Gasiamis 1:14:35 I do know exactly what you mean when you wake up in the morning. I had forgotten about all of this for one moment. Graham Hall 1:14:43 Yeah, you were a couple great. No, I can’t talk or as talk as I want to be. I mean, there’s good moments from it, yeah, and there’s good reasons sometimes. Is because there’s no problem the No problem driving every day, in and out for giggles like that. And gearing is like that. And now my relationship for my wife, is as solid as it was previous, which is fantastic. And also the friends around me quite I can talk to them and whatever. Although there’s two people that have worked by the wayside? What were they? What by the wayside mean? Bill Gasiamis 1:15:48 Gone, by the way. Graham Hall 1:15:51 And they’ve sort of not been they want to talk to me, I guess, I don’t know why. Bill Gasiamis 1:16:01 It’s more about, it’s not about. Graham Hall 1:16:05 Yeah, and I’ve got new friends on that. So either is by a stroke or not. Bill Gasiamis 1:16:15 Yeah, it’s challenging being the friend of somebody who’s really unwell, especially if you don’t have the skills to I don’t know. You might not have the psychological, emotional and mental skills to deal with what happened to your friend, let alone interact with them, and it seems a little bit harsh, but the best thing that they’ve did was not attend and not be there, because if they’re going to be awkward and if they don’t know what to say and if it’s going to be difficult, well, you know, maybe it’s better that they don’t attend. Graham Hall 1:16:57 Yeah, I mean, I don’t know what the the numbers? Because, I guess some managers and relationships stopped because of aphasia. Bill Gasiamis 1:17:09 Yeah, very much. Graham Hall 1:17:10 Because that their person or their other partner don’t want to know, or they don’t understand, or it gets harder and harder. Bill Gasiamis 1:17:23 It’s triggering as well. So, yeah, you know, your partner has a stroke, and then all of a sudden your mortality comes into the picture. It’s like, you have to think about “Oh, wow. Yeah, that was touch.” and go “Oh man” you know, like mortality becomes front and center for the first time, perhaps, in somebody’s life. And then it’s a big deal. It’s my wife was just as unskilled to deal with how she would experience my stroke as I was, it’s a big job for her to go through all of that, you know. Bill Gasiamis 1:18:00 So she’s been amazing. But you can understand why some people who have got, perhaps some other personal or emotional or psychological issues can’t also now deal with stroke of somebody else. It’s a big deal. Graham Hall 1:18:16 Yeah, it’s what their previous life was impacts the life they’ve got now. Bill Gasiamis 1:18:25 Correct, how they’re going to respond. So I feel like I was initially upset with people who went by the wayside also, but I think I’d like to give them a bit more grace these days, give them a little bit of grace. And, you know, understanding. Graham Hall 1:18:45 Yeah, but I guess when you have a conversation with people and you can’t explain exactly words I want to use, it’s harder for them to understand. And sometimes maybe they’ve got they perceived it. I’m not what I’m searching for. You say what I’m searching for, Bill. Bill Gasiamis 1:19:18 You’re not whole, or you’re not the same, or you’ve changed. Graham Hall 1:19:24 Yeah, and they’re not, I know. Bill Gasiamis 1:19:27 It’s like they can’t interact with you. Their interaction with you was not necessarily based on friendship, but on how you spoke to each other, how you played together, and then that’s taken away, and then they don’t know how to relate to you anymore. Graham Hall 1:19:47 Yeah, although I think musicians or museums are quite malleable by coping with different levels of playing. Within a piece of that. So the central thing with damage, they know that you me can play, and if it’s a bit slower, or it’s not just slightly in time, they merge into in and out. Making sense? Bill Gasiamis 1:20:23 Yeah, adjust. Graham Hall 1:20:24 Yeah, and that seems quite, exactly, well, quite to adjust with other people around, even the band or the playing for one piece. And then do you see them for several months? There’s always a jar between the right groove, if you like. But this is a quite malleable good word. And I think all the musicians, all my friends, coach me quite easily. Actually, it’s the non musicians that found a bit maybe okay, because you mean. Bill Gasiamis 1:21:03 I do know what you mean. That might, you may have sort of touched on the difference between musically minded and, you know, non musically minded brains and how a musically minded brain is less fixed, less set in concrete, whereas, potentially, a non musical mind has the tendency to be more set and fixed. And that’s why mindset is such an important skill. You know, the mindset of stroke recovery needs to be about recovering after stroke. Bill Gasiamis 1:21:48 That’s, you know, that’s the mindset that you require. It’s a recovery mindset, in as somebody who is experiencing stroke from their friend’s stroke experience, rr their wife’s or their husband’s life experience or a stroke experience. You know, maybe they can’t see the shift. Maybe they can’t experience that mindset shift to go from what regular life was to a recovery version of that, and what that means. Bill Gasiamis 1:22:24 And I certainly understand, like, there were times where my wife said “You know, I just don’t want this version of Bill, like, I want the other version back.” And it’s like “Okay, so do I, but that’s not possible.” You can’t, and then it’s like, let’s re create it. Let’s change it and make it better or different, or whatever, adjust. Let’s adapt, let’s be malleable. Graham Hall 1:22:51 Yeah, because, whether an orchestra, you’re not playing the same piece every day, different styles, different playing styles, small or large ensembles like that, a different conductor every two or three days, different course and things like that, so they can easily cope. Bill Gasiamis 1:23:22 For that, you can’t be fixed in the way I’m going to play, like this. Everyone has to play, just to me. Graham Hall 1:23:30 Yeah, no, exactly, yeah. And even playing with also within the schedule, there’ll be a schools concerts, or maybe there’ll be a higher gig profile concert in London, or like that, or maybe the crucial band halls like that. So different level of playing, although the level would be good, but sometimes it’s really higher or been bit lower, or because of the scores, comes that you can relax a bit and not being so big to me, I do so. So you all got to move, whatever the situation is between you’ve got. Bill Gasiamis 1:24:21 You got to move between emotional states, highs, lows, yeah, middles, okay, so that’s good. That gives a lot of flexibility and a lot of adaptability and malleability. It’s exactly what you said, I love that. Lessons Learned from Stroke And Speech Recovery Graham Hall 1:24:38 Yeah, but I think that’s why my progress is there because I’m using both parts of my brain, actually, it’s not just left and right, which is, I know he said that languages are left. Well, the hub will be left, but it hops around your brain. Bill Gasiamis 1:25:07 Because of Neuroplasticity, it’s true that, you would have more space, more places in your head, as opposed to me about where language can occur, because you have that musical language, and I would have less, and it would make sense that a musician who’s been playing for 50 years is going to have more neuronal pathways, that they can recruit to help with things like other sounds, other sounds like voice, expression, words, etc. It’s true that you would just have a better, a different baseline than I would have to begin a rehabilitation. Bill Gasiamis 1:25:57 In that space, I and your friends who fell by the wayside that it’s just about how they relate to you now may they may just be struggling to relate in this new way, they’re less malleable. They just kind of moved on, yeah. Graham Hall 1:26:23 But of course, every studies I’ve learned about brain and music, particularly the guys that look about scans in the brain, they look at the scan, and the only thing they can say by that is the musician’s brain. They can’t say that is a writer or a mathematician or a lawyer, but depending on where it is and the scan of the brain, which left side, right that is a musician, which is fantastic. Bill Gasiamis 1:27:12 More activity, far more activity. Graham Hall 1:27:16 I did some scan, my third scan my brain from study for trying to remember 20 words to see which parts the brain lights up, and not just between normal words, but archaic words like barnacle, binnacle, which is a housing for a compass, and different types of iguana, which you never heard before. So I have to practice those words for two weeks, put in the scan. And results was that was more of more participation in my right side than normal people use on my left side. So I’ve got the proof that I’m using my brain in its full entirety. Bill Gasiamis 1:28:28 Yeah. What has there been any lessons from stroke? Has stroke taught you something? Have you become wiser, or has there been an “Aha” moment? What has stroke taught you? Graham Hall 1:28:42 I’ve got more and more books about the brain than music ever my kindle. I mean, I’ve got got a list there. There’s a book by Gardener, The Damaged Mind, which is good, actually, and neuropsychology of art, which is about different either writers or or painters or composers to have brain damage or brain injury. And, of course, anything by books by Oliver Sacks. I mean this book, particularly about bringing the music called Music Ophelia. Have you read that book? Bill Gasiamis 1:29:52 I haven’t, but it sounds like a very interesting title, Music Ophelia, tales of music and the brain. Graham Hall 1:29:59 Yeah, actually any books by Wild for sex. There’s a book called, An Anthropologist on Mars. That’s it, and also, one of the books about aphasia, called I Stroke, A Diary Of Recovery, by Douglas Ritchie. I And A Man Who Lost His Language by Sheila kale. Advice for Other Stroke Survivors Graham Hall 1:30:55 And all those two or three books called Stroke Diary and it’s more, I think that’s why it’s what it’s come out for me was a stroke by how remarkable we’ve got in our heads. We should never think of that before. Obviously, think about it sooner happens and not there. But now I realize that’s three pound clearly in your head is just a remarkable organ. Why does anyone think about that before? Graham Hall 1:31:47 Because it’s just, and what’s remarkable, of course, when I was talking to students, but the students says, either talk for them about aphasia, and I’m talking about my left language part by using my left language part, which is remarkable if you think about it, because normally, if it’s any damage, you never use the damage was broken. Use the other side of it, but the brain copes. Bill Gasiamis 1:32:28 Looks for new ways to adapt and to rewire and to gain something back. For a lot of people, that’s definitely possible, for some people, depending on the level of damage, it’s not possible, but absolutely there’s it may not look the same speech. Your speech doesn’t sound seem the same as it did before, but it’s still speech. It’s still communication, it’s still something that has come back. And that’s the thing, sometimes walking doesn’t look like walking did before the stroke for a person, but it is a form of walking, and you’re upright. Bill Gasiamis 1:33:10 And I know you might be painful, or it might be with a limp or or whatever, but that is the sign of that Neuroplasticity has occurred, you know, it is walking. So, I want to wrap up, because we’ve been talking for a while, and I really appreciate the chat. Graham Hall 1:33:31 That’s fine. Bill Gasiamis 1:33:32 I want to ask you, what would you like to say to other stroke survivors, someone that is in a similar position to you after having experienced a stroke and dealing with aphasia. Graham Hall 1:33:46 Well, I just practice, don’t stop practicing. Ever, ever, even during your line days in your life, keep practicing, but particularly with aphasia, because if you don’t practice your speech, will get low before and I think that’s why a lot of people I’ve talked to, with aphasia, and not even depending what the age, but even so young or old, they put a level which I hate, the word I’m supposed to be brought is the level of which you act. Graham Hall 1:34:45 And they’ll stop thinking about it, bright sync, and the speech will get lower, and actually, when you get older, it becomes harder. So obviously, with anything with life, but for me anyway, speech is what, that’s my gig now. Speech. Bill Gasiamis 1:35:14 I love it. I know what you mean. Speech is your gig now, that makes sense about all the stuff you said about music. Final Thoughts and Reflections Graham Hall 1:35:20 Yeah, because it’s just, you know, I’d rather get better with that than my plan, I guess. Bill Gasiamis 1:35:33 Nailed it and on that. Okay, thank you so much for joining me on the podcast. Graham Hall 1:35:41 Yeah, thank you, Bill. Thank you very much. Bill Gasiamis 1:35:43 That’s a wrap, what a lovely conversation. Thank you. Graham Hall 1:35:48 Thank you. Bill Gasiamis 1:35:50 You’ve done well. It’s about an hour and a half, but that’s okay. Graham Hall 1:35:56 Yeah, you might want to cut it down. Bill Gasiamis 1:35:58 Yeah, no, I won’t be cutting it. I mean, it’s perfect. It’s just when they get too much beyond an hour and a half. You know, it’s just not my format. My format is between an hour and an hour and a half, but that’s okay, it doesn’t matter. It was all relevant, and it was just a really deep, it was a really lovely conversation. Bill Gasiamis 1:36:19 So I actually gain an insight into what it’s like for people who have experienced aphasia. And I’ve got some other interviews that I’ve done with people with Aphasia different, and that’s what’s great about this is I love adding interviews to that playlist, that aphasia playlist, because people struggle to come onto a podcast when their speech is what they consider not good enough. And yeah, I know most stroke survivors won’t listen to the full interview, because they don’t have aphasia. People with Aphasia will. Graham Hall 1:37:04 Yeah, I’m sure just, I mean, it’s a fantastic topic, actually, with aphasia, talking with aphasia people, or the people talking about aphasia with aphasia, good helps. Then, of my course, and it’s that actually, because I used to talk to students in Sheffield, the course for speech and sleep and therapy courses, and every two or three months, I talk to them in small groups about how works, the facial works or not works. Graham Hall 1:37:48 But because of funding, they’ve stopped that. And now because Species Family Service are quite remarkable. Jobs, actually, and it’s just, it’s bad in this business. Maybe the same for Australia, but the funding is just. Bill Gasiamis 1:38:15 Always, it’s same issue everywhere that what’s great about this podcast is, I hope that speech therapists and people who know about aphasia can access it and get an insight that they couldn’t get before that’s kind of the whole purpose. Bill Gasiamis 1:38:33 Yeah, create a database, a library of stories where everyone can access it, and that can help either the person who’s directly impacted by aphasia or the person that helps people with aphasia, loved ones, family members who are struggling, you know, whatever. So that’s why I love this might sound a bit cringy, but I think it’s brave when people with Aphasia come onto the podcast. Graham Hall 1:39:05 Yeah. Bill Gasiamis 1:39:06 It’s just because it’s, I know there’s a lot of challenge around it, and, yeah, the expectation to be, I don’t know what not, what’s the word like, I don’t know, often, what I find is people with aphasia that suffer the most is the other person on the other side of the conversation makes it hard by winding them up, or putting words into their mouth, or not being patient. Graham Hall 1:39:37 Yeah, but it’s harder for them, like quite few, because you’re working overload to make sense of what words I’ve just said, yeah. So it’s harder for them, for us, I guess, to me, as well as sometimes bit harder, because you’ve got to figure out what that person said and translate it into normal English. Yeah, not aphasia, speak. Bill Gasiamis 1:40:16 Well, that’s it, that’s my job. Thank you so much. I really appreciate it, thank you. This will be out in a few weeks or so, something like that. Look out for it. Graham Hall 1:40:24 Okay, fine. Bill Gasiamis 1:40:25 Reach out, anytime. If you have anything you’d like to share, ask whatever, send me an email. Graham Hall 1:40:32 Great. Thank you. That’s great, good night. Bye. Bill Gasiamis 1:40:39 Well, that’s a wrap on today’s episode, a massive thank you to Graham Hall for sharing his journey so honestly, his story is a reminder that recovery is ongoing and that speech can improve with practice, patience and creativity. Before you go, here are a few things you can do to stay connected. If you want to learn more about Graham, visit his website at ghmusicprep.com, and check out his music at grahamhall.bandcamp.com, both links are in the show notes. Bill Gasiamis 1:41:12 Now, new YouTube subscribers are welcome. With 320 people joining every month, we’re about to hit 5000 subscribers. Make sure you subscribe. If you haven’t yet be a part of the conversation, drop a comment in the YouTube comment section below the video, or share the episode with someone who you think may find it helpful. Podcast listeners, thank you for your support. Ratings and Reviews helping to spread awareness and connect more people with stroke recovery stories. That’s all for now, I’ll catch you in the next episode. Intro 1:41:52 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals, opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol. Discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis. Intro 1:42:22 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Intro 1:42:47 Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Intro 1:43:11 Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there. The post The Hidden Struggle of Speech After Stroke: A Musician’s Story appeared first on Recovery After Stroke .…

Recovery After Stroke

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Why “You’ve Hit a Plateau” in Stroke Recovery Is a Myth – And How to Keep Improving! 1:28:09

12 дней назад1:28:09

1:28:09

Have you been told your stroke recovery has plateaued? Dr. Matthew J. Ashley explains why that’s a myth and how you can keep progressing. Highlights: 00:00 Updates on Bill Gasiamis’ Book and Introduction to Dr. Matthew Ashley 02:24 Dr. Matthew Ashley’s Background and Personal Connection to Brain Injury 10:36 Dr. Ashley’s Educational Journey and Legal Background 14:30 Challenges in the Medical System and the Role of Self-Advocacy 21:36 The Vital Role of Advocacy in Stroke Recovery 34:57 Understanding Stroke Causes and Recovery Support 46:56 The Concept of Recovery Plateau and Its Implications 52:53 Challenging the “Plateau” in Stroke Recovery 1:01:21 The Role of Nutrition in Stroke Recovery 1:11:39 Navigating Stroke Recovery: The Impact of Nutrition and Medical Guidance 1:19:34 Dr. Ashley’s Organization and Its Services 1:23:38 Final Thoughts and Resources Transcript: Updates on Bill Gasiamis’ Book and Introduction to Dr. Matthew Ashley Bill Gasiamis 0:00 Hello, everyone. Before we dive into today’s conversation, I have some exciting updates to share about my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, which is now approaching 400 copies sold, and is receiving excellent reviews from readers who find it both inspiring and practical for navigating post stroke growth. Bill Gasiamis 0:24 One listener, Sandra, recently commented on our YouTube channel “I brought your book from Amazon. It’s great to read lots of information to think about. My arm is slowly recovering, it’s frustrating. I tune into your podcast and I feel better. Thank you. Hope you get 100 million listeners soon.” Bill Gasiamis 0:47 Wow, wouldn’t that be something, if you haven’t picked up your copy yet? Now is a great time to do so. Also, remember to visit recoveryafterstroke.com/learn . For a range of courses and resources created by a stroke survivor for stroke survivors helpful tools to guide you through every step of your recovery journey. On today’s episode, which is a must listen for anyone questioning the limits of stroke recovery. Bill Gasiamis 1:16 We’re speaking with Dr. Matthew J. Ashley, a Board Certified neurologist and a neuro rehabilitation specialist who holds a law degree. Dr. Ashley brings a unique blend of clinical expertise, personal experience and legal insight to his work, making him a powerful advocate for stroke survivors. His journey began with a personal connection to brain injury, and has evolved into a mission to redefine what recovery means, particularly challenging the conventional idea of a recovery plateau. Bill Gasiamis 1:51 In our conversation, we explore how Dr. Ashley’s background in neurology, neuro rehabilitation and law shapes his holistic approach to rehabilitation. Why the notion of hitting a recovery plateau can be more myth than reality, and what that means for your ongoing recovery, the challenges of navigating a fragmented healthcare system and the importance of self advocacy and the role of integrated care, including therapies like nutrition and lifestyle changes in driving continuous improvement. Dr. Matthew Ashley’s Background and Personal Connection to Brain Injury Bill Gasiamis 2:24 Be ready for an empowering conversation that challenges traditional recovery narratives and offers practical insights to help you push beyond perceived limits. Let’s get started. Dr. Matthew Ashley, welcome to the podcast. Dr. Matthew Ashley 2:42 Thanks, Bill. Thanks for having me. Bill Gasiamis 2:44 Absolute pleasure. Tell me a little bit about your background. Dr. Matthew Ashley 2:48 Yeah, well, it depends on how much you’d like, I’m a neurologist by training, and then did sub specialty training and neuro rehabilitation. But my journey with dealing with people’s people with brain injuries starts much earlier, and there’s a personal and a family connection to that. And really kind of grew up in the environment, in a literal sense, of people who were rehabilitating from predominantly traumatic brain injury, but other types of brain injury as well. Bill Gasiamis 3:22 Were you quite young when your family member went through something like that? Dr. Matthew Ashley 3:27 Yeah, so my father’s brother, so my uncle, unfortunately, before I was born, had a aneurysm rupture and was quite disabled from that for for quite a period of time, and that was kind of the inciting factor, in some ways, for the development of the organization that I still work with, which is a family business where we run rehabilitation facility for people with Any kind of acquired brain injury, and that includes stroke. So he, you know, his journey was his journey, and I was very young, so I don’t, I only know bits and pieces of it from sort of hearing it growing up. Dr. Matthew Ashley 4:13 And I have some sort of vague memories of him. I mean, of course, it’s difficult to discern what’s really my memory versus what I’ve seen in photographs or videos. But that was kind of the personal side to that. And I grew up in a family who was both working with him initially and then subsequently working in the brain injury rehabilitation space, so that was always just sort of part of my world. I would after school, go and do my homework at the clinical facility. And, you know, kind of grew up around that in a very real sense. Dr. Matthew Ashley 4:54 So it was always sort of part of my life in the background, and then later on, as I got older. And and it ended up going into medicine as a career. I tried to approach that with an open mind and think that perhaps some other field would grab me, and I would gravitate towards that. And there were certainly other things that I enjoyed and liked, but in the end, I really still liked the the work that I kind of grew up seeing, and so I did the neurology training and with with an eye towards ultimately ending up in the rehab world. Bill Gasiamis 5:31 Were your parents physicians as well? Dr. Matthew Ashley 5:34 No, my father and mother were both speech pathologists, actually, by background, but really, you know, saw a need in my uncle and and others that were their kind of initial patience for something that was more comprehensive than what at least existed at the time, and that was kind of the the birth of of our organization. Bill Gasiamis 6:01 I think back to my upbringing and school homework was done at home, and I didn’t know anybody who had a brain injury at all. And it kind of shaped me, in a way, of being unaware of people’s plight. You know, some of the challenges that other people face, and I could say, you know very comfortably that I was ignorant of what it’s like living with a brain injury until the age of 37 when I had my own experience. Bill Gasiamis 6:37 Your upbringing and your interaction with people in that space would have been completely different from anybody else who you went to school with, hung around with. This might be a hypothetical question, but do you think it changed you. It shaped you differently than it would have, perhaps if you were just the regular kid going home to a kitchen table to do your homework. Dr. Matthew Ashley 7:09 Yeah, I think it’s a hard question to answer, and don’t get me wrong, sometimes I was at home doing my homework, yeah, but being around it, I think it’s impossible for not to shape some of your worldview. Seeing people who are struggling with something like you’ve mentioned, that most people don’t, can’t really conceive of, or if they do, it’s in a peripheral sense, it does give you a different lens with which to view the world and I honestly feel very lucky to have seen that early in my life. Dr. Matthew Ashley 7:48 And to really it helps shape a perspective of maybe some gratefulness for things that otherwise you know, it can be difficult to be grateful for, and I don’t want to act like I’m some sort of Zen master who’s always living in that space. I’m a human being, and I experienced frustrations and all those things like everyone else. But I do think it helped, it helped to shape the narrative and the arc of my life and helped me really again, value that population of people that I had grown up around and witnessing their plights and their struggles and their successes and all of that. Dr. Matthew Ashley 8:31 And to really be able to grasp what is possible for people who are going through that in a way that, as I went through my training later on, really helped me become a better professional as well, because I had seen things that really went against kind of maybe the traditional thought process for how people’s outcomes would be, or what was possible, if you will. Bill Gasiamis 9:03 I think, you know, 5% more gratitude growing up is a massive thing above the majority of kids, you know, going to school and high school, you’re probably a step ahead there just because of that. Dr. Matthew Ashley 9:18 Well, I again, I don’t want to, I have my version of what I was like “I’m sure it’s very far from the truth.” I certainly had my other moments as a child too, of being entitled and feeling like, you know, these minor frustrations we experience are a big deal, I don’t want to make light of that. I think that’s the human experience. Dr. Matthew Ashley 9:42 But it does help, it does help, and especially as we get a little more gray hair and start to realize other things about life I do. Like I said, I’m very thankful that I grew up in that environment. I think it has helped me, and it helps me as a parent and as a physician, to just have that perspective. Bill Gasiamis 10:04 Let’s take a quick pause here before we dive back into Dr. Matthew Ashley’s insightful discussion about breaking through the recovery plateau and optimizing stroke recovery. I wanted to remind you about some important resources. First, in my book, The Unexpected Way The Stroke Became The Best Thing That Happened. You can get it on Amazon or at recoveryafterstroke.com/book , it’s already inspiring. Hundreds of stroke survivors also visit recoveryafterstroke.com/learn . Educational Journey and Legal Background Bill Gasiamis 10:36 For narrated video lessons and other resources crafted specifically for stroke survivors and caregivers. Now let’s get back to Dr. Ashley and learn more about his unique background in neurology, neuro rehabilitation and law and how it’s reshaping the conversation around stroke recovery. So what was your first qualification after high school, which path did you head down? Dr. Matthew Ashley 11:03 Yeah, so I went to University of California, San Diego for college, and there I eventually ended up landing on a Bachelor’s of Science degree in cognitive science with a specialization in neuroscience. So again, sort of that thread of all of this has been present in my life in in some way, shape or form, more or less throughout, and that kind of degree is sort of this mishmash of biology, neurobiology, psychology, and throw in a little bit of computer science in there, as I was studying that. And you know that, of course, has come more to the forefront. Dr. Matthew Ashley 11:03 Now that’s not really where I ended up landing. So my computer science, part of me died after I graduated college, but it was helpful background, and it’s sort of useful. And then from there, I ended up doing a my graduate work in Illinois at Southern Illinois University, and I did a combined law and medical degree there, and that was a six year program, and finished up that in, I guess, 2009 then did a neurology residency and eventual fellowship at UCLA, and that was kind of my arc. Bill Gasiamis 12:32 Wow, does law and medicine go together, or is that something that you do thinking you might go down one path or another path? How come they get done together? Dr. Matthew Ashley 12:47 Yeah, well, you know, my young person version of that answer is different than perhaps what it is now, when I first started that I really had an eye towards the advocacy piece that applies to people with brain injuries of any kind. You know, unfortunately part of the nature of the injury is often an ability to communicate well, to which is a crucial part of self advocacy and advocacy for a group of people. Dr. Matthew Ashley 13:24 And then the other part that, I don’t know how, if we want to get into all this, but, you know, the Insight component of brain injury is one that is particularly problematic. That many times people who have had these kinds of neurological difficulties aren’t necessarily so aware of the problems that they’re facing, and that poses its own whole host of difficulties. And from a an effectiveness in advocating for yourself. Dr. Matthew Ashley 13:56 You can see you don’t have to get too far to know that it’s going to be detrimental and problematic if you don’t really think you have a problem, that you’re not going to really a big, good self advocate. So the early on, when I did that, that was kind of a major driving force. Looking back on it now and in retrospect, I think you know, having an understanding of the law broadly, what the kind that you get from going to law school, and not really, practicing in a specific area, which is my, you know, where I landed up, landing It’s just helpful. Challenges in the Medical System and the Role of Self-Advocacy Dr. Matthew Ashley 14:30 It sort of informs a lot, ranging from the things I set out to do on the advocacy parts to legislative things, you know, in this kind of mundane as contracting so I don’t regret a minute of it. Bill Gasiamis 14:49 Honestly, it sounds like a good thing to have in the background, especially when you’re coming from your perspective. The reason being is one of the struggles that people face dealing with the medical system. The universal struggles in America, it’s slightly different because of the way that you guys access medical help through insurance, or, if people are not insured, other means. And here in Australia, the medical system is pretty, pretty good. You get free medical for every citizen. Bill Gasiamis 15:27 And then people can also opt to have private insurance to cover their medical costs. And usually private insurance gets you going to skip the queue and a choice of hospital, a choice of Doctor, those kind of things. I didn’t go through a private system. Went through the public system when I was unwell, and after one of my after the second bleed that I had in my brain, which was in March 2012 my cognitive impairment was pretty great, and my wife was the person doing all the communicating between me and the doctors. Bill Gasiamis 16:08 And trying to suss out where I was what, what type of help I needed, etc. And of course, she’s not a nurse, she’s not a doctor, and she’s never dealt with anyone that’s had a neurological condition before. So a lot of the things that I needed were not presented for me, or they weren’t diagnosed, and most of that was in the cognitive deficits, you know, the inability to remember a person who came to visit me, start a sentence, finish a sentence, have a conversation with anybody. So it was quite a challenge for me to navigate any of my recovery. Bill Gasiamis 16:53 At that time, I had no idea other than kind of be this passive survivor and and then I wasn’t even hoping for the best, because my brain wasn’t even switched on, it was completely switched off, it was offline. So then I don’t know what I was doing, other than sitting through a process and hoping for some kind of a positive outcome. So I love that fact that already you’re thinking you particularly and maybe your organization as a result of the work that you’ve done and the training that you’ve had. Bill Gasiamis 17:27 You’re already thinking about our patients come to us are still going to be requiring advocacy, amongst other things, and that it seems like you’ve made it part of your philosophy or part of your role to also ensure that your patients are being treated appropriately, medically and ethically, but also are being guided by your organization. How do you navigate that with your families that come through and your patients or your clients? Dr. Matthew Ashley 18:08 Yeah, that’s a really big question. Bill, I mean, for starters, you know, just coming back to you and your your situation, you know, big congratulations on everything you’ve accomplished in terms of not only your own recovery, but putting together something that you’ve done here. And again, I’m still becoming a little bit familiar with your work, but I think it’s really important, and it’s great to have the platform that you’ve developed for others to be able to shorten their learning curve for exactly what you’re describing. Dr. Matthew Ashley 18:43 Everyone who’s going through this, the vast majority of those people, are coming to it like you were. Everything was fine, and then one day it wasn’t. And that happened to them, it happened to their family, and all of a sudden their this whole thing is thrust upon them, and they’re trying to manage it. And it’s, you know, to put it bluntly, it’s a nightmare. So you have and again, I don’t, I don’t know the intricacies of how things work in Australia, but I’m intimately familiar, for better or worse, with how they work here. Dr. Matthew Ashley 19:20 And there are a lot of great things that work in our system, and there are, unfortunately, some vagaries. And so what we try to do is Shepherd our patients and families as much as possible through that process. And I would love to be able to say that I’m able to help every person who comes our way, and, you know, unfortunately, that’s not the case, but the ones that we do, we really try to maximize what we can do for them in terms of how we go about that. We really try to take a whole patient approach. Dr. Matthew Ashley 20:01 And that’s kind of a buzzword, but I think for us, it really does apply. We have a comprehensive care setting where we have everything, ranging from physician level care, nursing level care, all of the various therapeutic disciplines. So that includes physical therapy, occupational therapy. There’s probably different terms. Some people, you know, say physio and there’s, there are other terms, but in here, it’s physical therapy, occupational therapy, speech language pathology. Dr. Matthew Ashley 20:30 We actually break out the cognitive component and what you’re discussing into two buckets, and we approach that from a speech language pathology perspective for certain aspects of that, including dysphasia and swallowing, but also cognitive components of that. And then we also use people who come to us from an educational background and a kind of a school centric background to also augment that, because we feel like you alluded to. Dr. Matthew Ashley 20:59 That the cognitive part of the recovery is really where it’s at because, yes, it’s very important for people to recover their ability to ambulate, for their ability to use their fine manual dexterity and their visual system and all of the other things. But at the end of it, what really ends up limiting people from having a high quality of life and independence, and the things that for most of us, we consider very important, is that cognitive component. And so we focus a lot there and then buried within that as well is we have. The Vital Role of Advocacy in Stroke Recovery Dr. Matthew Ashley 21:36 We have an embedded counseling and case management presence in our organization, who the case manager is kind of like the architect of the entire experience, pulling everything together and shaping it into what it should be. And the counselor is there, not just for patients and people who are experiencing the insults, but also their their family members, because we know, and I’m sure you’ve experienced I don’t want to speak for you. Dr. Matthew Ashley 22:03 But having you know you alluded to it with your wife, having someone there advocating on your behalf, seeing things from a different lens than maybe you’re seeing it yourself, is so critical to success. Bill Gasiamis 22:18 It’s one of the biggest challenges I know stroke survivors who don’t have the support that I had, they will do exactly that. They’ll try and navigate the stroke world, both as their own advocate, but then also as a patient. So as a patient, it’s nearly impossible to do as a patient who’s experienced a stroke, but then, as somebody who’s not an advocate by nature or is has never been in the position to advocate for somebody else or themselves, now they have to navigate a system where they’re advocating for themselves, a system they don’t know. Bill Gasiamis 22:58 And at the same time, this recovering from a stroke, it’s just a minefield. I mean, it’s almost an impossible task. And that’s the thing about that’s the thing about the medical system in Australia, it’s quite good. But I’ll go and visit my neurologist, and then I’ll get some kind of a report, or some kind of an understanding of what happened to me, and that’s cool. And then after my surgery, for example, when I had to regain the use of my left side and learn how to walk again and use my left arm after the hospital stay. Bill Gasiamis 23:38 The initial month hospital stay where all the energy was focused on the physical rehabilitation. There was no work done on the cognitive rehabilitation. There was no assessment to see what other services I acquired I was it was the obvious things that were supported “Okay, Bill, wake up from surgery. Let’s go for a walk to the toilet for the first time after surgery.” “Oh, Bill can’t actually walk.” “Oh, okay. We need rehabilitation. We need to get his leg working again.” And really that was kind of the extent of the of the process. Bill Gasiamis 24:25 So after neural, I’m not sure as well in the whole experience where the neurologist came in to the conversation and where they stepped out. So then after that, I get sent to outpatient rehab because my one month stay in inpatient rehab ended, and that’s done about a from my house. It’s about a 30 to 40 minute tram ride and then walk to the particular faci. Literally, I wasn’t driving, so I had to walk there in my fragile just learnt how to walk state when my wife wasn’t around, when she was working. Bill Gasiamis 25:11 And then these guys had the task of rehabilitating me further, getting some of those fine motor skills developed further. But again, there wasn’t that. It seemed to be fragmented. The whole system was fragmented, you know, you saw a specialist over here at that place, and then you saw somebody to help you get your walking back at this place. And then it was a little bit all over the place. So if it was very difficult to get efficient care and treatment, to make the best use of my time, and the best use of the time of the people supporting me in getting better. Dr. Matthew Ashley 25:58 Yeah, and I think that your experience is, you know, unfortunately is a very common one. I think that it’s very unusual that someone has a smooth experience that coordinates all of the various parties that really need to be at the table in order to maximize the potential for recovery and to do that in a way that’s that’s consistent and coordinated, and where each party is talking to each other and sharing notes on what they’re understanding and finding, and then sharing that with you and with others in your life. Dr. Matthew Ashley 26:43 So our system over here is also highly fragmented, and that’s at different levels of care. So, you know, your first encounter with the healthcare system here, I would imagine it’s very similar. You’re going to have EMS, and then you’re going to have emergency department evaluation, which you know for stroke, is going to mean CT, most likely right out of the gates, many instances followed by MRI, not every instance in a situation like what you’re describing with bleeding, sort of then you’re off to the neurosurgical track. Dr. Matthew Ashley 27:26 Do we need neurosurgical intervention? Do we need to decompress? Do we need to evacuate hematoma? Do we need to clip recoil aneurysms? There’s a whole host of of possibilities there. And then, if you’re in the ischemic stroke bucket, you know, then you’re onto the neuro interventional hopefully track if you’re in time. And that means, you know, can we go in and extract clot and reperfuse area of brain, and that’s all sort of this, what I would call hyper acute, you know, management that’s happening within hours to the first day. Dr. Matthew Ashley 28:08 And then that person’s then going through a neuro, hopefully, a neuro ICU. In some settings, there may not be a neuro ICU, it might be a general ICU, and that’s going to that period of time can last anywhere from a day to weeks, months of time depending upon this particulars of the scenario and that in that setting, things are relatively coordinated. And as you suggested, the degree of focus on recovery and rehabilitation is low. It’s more focused on, let’s stabilize, let’s preserve, let’s keep people, you know, frankly, alive. And then there is a shift. Dr. Matthew Ashley 28:56 When people get to a more stable kind of situation and they’re in the General Hospital sort of floors, then you can really start to dig a little bit more. But again, even then, the cognitive aspect of things usually is not being addressed. It’s usually more focused, even from a speech perspective, it’s more focused on on things like swallowing and can you eat safely? Can you meet your nutritional needs by mouth, or do we need to do something else to help support you? Dr. Matthew Ashley 29:26 So those are, again, ideally people are paying attention to some of the other aspects as well, but it’s sort of buried in the background, and then from there, at least here, the next step for I’d say most stroke patients is going to be to go to hospital based rehabilitation, and I don’t know what that looks like in Australia, but that’s that could be a different floor in the same building. It could be a completely separate facility. And that’s the first time, at least, generally speaking, here, where, if patients are stable enough, people might start really honing in on some of those costs. Dr. Matthew Ashley 30:00 Other processes and starting to address them, and then from there, it gets even more fragmented. It could be that person goes home from there, and then they’re dealing with piecemeal as you suggested, you’re seeing your physio in one hour on one day, and you’re seeing your occupational therapist one hour on a completely separate day in a different location. They don’t talk to one another, they maybe read each other’s notes, but maybe not the neurologist who with I have tremendous respect for my specialty. Dr. Matthew Ashley 30:36 But most of them, by that point, they’re doing medical management of your risk factors and comorbidities, but they’re not intimately involved in the rehab process. So that’s where things get really split. And you know, at least here for us, the mission that our organization tries to fulfill is filling that void and getting people from that hospital based environment into a much more real world environment where they’re in a living environment that looks like home. It’s not a hospital bed in a hospital room. Dr. Matthew Ashley 31:16 They’re getting up in the morning, they’re getting themselves ready. They’re going to therapy, you know, during the day. And it’s sort of reestablishing that kind of normal rhythm of life where you have a morning and you have a routine, and you get up and you go and you do your, you know, your work is, doing your recovery work. And it’s with folks who a all have experience in working with brain injury, and then also are talking to one another. Dr. Matthew Ashley 31:46 And collaborating and saying “Hey, I’ve identified this issue, this problem that we need to try to address, and then everyone’s working together to solve that. So, yeah, I think the description you gave is kind of the reason that our organization exists is to try to remedy some of those fragmented delivery models that exist. Bill Gasiamis 32:13 I love the idea of that. So one of the big frustrations that I get is people tell me that they reached out to the neurologist, and they don’t get the right kind of answer or support or help or whatever. But I feel like people are going to neurologists for the wrong reason. Can you give me a bit of understanding of why I would go to a neurologist, what type of information they’ll provide, what kind of support they’ll provide so that we can debunk the “I went to my neurologist and they didn’t give me anything.” Bill Gasiamis 32:51 Like I feel like stroke survivors are clinging to neurologists as the be all and end all of if I go there that I they’ll be able to look at my scan, tell me what’s wrong with me, tell me how to fix it, put me through the whole system, but I think that we’re misunderstanding what neurologists do. Dr. Matthew Ashley 33:12 I would agree. And I think, you know, there are different types of neurologists and different sub specialists, so it’s little difficult to put everyone into one basket, but I would say that even within the field of stroke, neurologists who there is a sub specialty for stroke, most of that is is focused on either the acute interventional side or in the clinical setting, you know, and meaning, like ambulatory clinic, the kind you’d walk into, they’re going to be focused on what was the cause of the stroke. Dr. Matthew Ashley 33:52 So causative factors, so that, and that can vary depending on the type of stroke and what you’re really up against. So, looking at, is there something that was an underlying cause of stroke that we have not yet identified, that we could potentially manage and treat and prevent subsequent strokes? So with hemorrhagic stroke those are things like I’ve mentioned, where you have vascular anomalies, maybe you have certain conditions that are affiliated with aging, where people are prone to having bleeding into into their brain. Dr. Matthew Ashley 34:28 And I don’t want to get too technical, we can Bill if you want. I just well in the audience with jargon. But there are conditions that can predispose you to having bleeding into your brain, the most common of which is is some kind of vascular abnormality. But there are others, and then there are conditions that similarly will predispose people to having ischemic strokes, a stroke where blood flow to the brain is interrupted. And that can range from the things that we all think about with heart disease. Understanding Stroke Causes and Stroke Recovery Plateau Dr. Matthew Ashley 34:57 So high blood pressure, high cholesterol, diabetes, smoking, history, etc, to genetic conditions where people are predisposed to forming clots, autoimmune conditions where people are predisposed to forming clots or having inflammation in their vascular wall, the blood vessel wall. So a lot of the emphasis with neurologists is on looking at, okay, why did someone have this event? And then, depending upon the nature of the event and where the damage to brain or potential damage to brain occurred. Dr. Matthew Ashley 34:57 We can give some idea of what are the problems that people are going to be like to be experiencing. We can also do an in person assessment to identify some of those deficits. But what neurologists are not particularly well suited to do, at least in our treatment paradigm here in the United States, is to actually really dig in to the the nitty gritty, and, you know, identify. How do we, how do we help this person recover from this in a in a moment to moment, hour to hour, day to day, week to week basis. Dr. Matthew Ashley 36:14 That’s not generally speaking, I’m kind of an exception, in a way, because I’m part of something much broader than than me in our organization, but I’m even in our setting, I’m not the one on the ground doing that work that’s being done, you know, by all of the great people in our organization that I mentioned. Dr. Matthew Ashley 36:35 So our therapists, the educational people, the counselors, the case managers, they’re the ones who are really unpacking that just little by little and layer by layer, and helping people identify problems and then address them. So long winded, way to answer maybe, but I hopefully that is at least a start. Bill Gasiamis 36:57 I think what I understand is that neurologists are diagnostic. They will diagnose something. Whereas, and when people go to them for solutions to cognitive deficits, my arms not working properly, physical deficits, etc, well then they’re not really equipped to handle that intervention or that approach, or whatever it is that needs to happen for that person, but they’re diagnostic. Bill Gasiamis 37:29 They can tell you if the stroke that you experienced was caused by a one of the conditions you mentioned and in the or, if it was caused by something other than something that you’re predisposed to in the brain, for example, a PFO. If somebody has a PFO, it’s really not a neurological thing. It is a heart condition, and then that person would be sent off down that path. And I feel like that’s a really classic example, actually, like, you know, somebody has a PFO, a clot is formed. Bill Gasiamis 38:09 It gets stuck somewhere in the brain, it causes a stroke, and then often, stroke survivors are going to neurologists with those types of conditions. I’ve had a stroke, not realizing that it’s kind of for lack of a better way of explaining it, not realizing that it doesn’t matter specifically that they had a stroke because their underlying cause is a heart condition, and therefore the neurologist diagnostic and time, I would say, involved in that whole acute phase is going to be basically just stating the obvious. Bill Gasiamis 38:52 There was a clot, it came from the heart, it isn’t a brain problem, it isn’t a vascular problem in the brain. It is just a stroke that was had, and I feel like that is probably the extent of it does. Does that encapsulate? Dr. Matthew Ashley 39:10 There’s a bit more so. So, for starters, you’re absolutely right. Cardiac conditions can be the underlying cause of stroke, and that is well known, and the more common one that even than PFOs, atrial fibrillation. So that’s part of the diagnostic evaluations for for ischemic stroke, is to look for those things and identify them and then manage them. So in the management of them, it depends upon what you find. So that is a big the diagnostic piece of neurology in stroke is definitely prominent, especially at the beginning. Dr. Matthew Ashley 39:43 As time goes on, depending upon what’s identified there is an ongoing role for someone from either a neurology or physical medicine and rehab, we background for managing things as they arise. So, as people go on, and again, to get technical. But there are many, many things that can happen down the line that emerge, because we know that even though stroke happens in one very short, finite period of time, it’s really a it’s an evolving process, the across, the recovery, and it takes a very, very, very long time to navigate all of that. Dr. Matthew Ashley 40:22 So, you know, people will can develop, just to use one example, they can develop spasticity in their arm. I don’t know if that’s something that you experienced, and that is something that needs to be managed in various ways. That you can manage it with medication, you know, by mouth. You can manage it with peripheral interventions with injections, for with example, with Botox, or you can use other there are other techniques that can be used to help with that. And then, spasticity is a moving target. It doesn’t it’s not like it starts and stops. Dr. Matthew Ashley 40:59 It has gradation, and so you’ve gotta sort of have a practitioner who’s gonna work with you across time in identifying what’s the appropriate intervention, and then where things settle 18 months down the line is likely to be very different than six months in which is likely to be very different than six days in. So, there is a role in an ongoing way for position level involvement, whether it’s neurology or physical medicine and rehab, in managing things of that kind of ilk. Dr. Matthew Ashley 41:35 But that there’s not a day to day kind of role for most physician providers in rehabilitation that needs to be done sort of elsewhere. And I think if I was someone dealing with brain injury of any kind, but definitely with stroke, I would hope to learn that initially, you know early on, so that you’re not expecting that your neurologist, provider is going to do all that for you, because that, again, with respect to my discipline, we will fail. Bill Gasiamis 42:08 That’s, I think that’s the point I’m trying to make, is that we the reason the neurologist deals with my brain. Therefore the neurologist should be able to handle all aspects of my brain. And it’s just through a lack of awareness, a lack of knowing, a lack of having been in the system before, a lack of having experience with stroke. You know, you cling to somebody to help you in this space, and of course, you go to the person that you what’s the word that you probably touched base first, and then you hope that that person’s going to handle everything. Bill Gasiamis 42:47 Because you don’t want to go to 1000 different places. And that’s kind of what I think does that. And I think also choosing the neurologist with the wrong speciality could be an issue too. Initially, without knowing you find a neurologist “Oh yeah, I’ve heard he’s good. He’s near me. I’ll go and check that person out. I’ll tell him what the problem is.” You get there and it’s like, there’s not much more I can do for you. Bill Gasiamis 43:14 You’ve had a stroke, etc. And then sometimes you might just come across the wrong person who says “You know, you’ll need to be referred to a different area.” Sometimes stroke survivors, patients also don’t know to say, where else if I can’t you know, if you’re not the right person, who else should I go and see? That’s kind of what I think is missing. And what I try to bring awareness to is like curiosity, more questions, more searching, be comfortable not finding the right person at the beginning and just be on the quest to forever find the right person for you, is my approach. Dr. Matthew Ashley 43:56 I think you hit the nail on the head that’s it. We have, and I think it gets even more confusing, honestly than it should be, because if you have a stroke, right, your intuition would be to go see a neurologist who has experienced a stroke, yes, and that’s great, and then you should, but then there’s a point at which it needs to be transitioned to someone who has more of an emphasis on recovery and rehabilitation. And that is not intuitive. So I think again, reaching your audience with that message is is really helpful. Bill Gasiamis 44:35 Yeah. So one of the big challenges that I how as a podcaster on this you know, in my little neck of the world, in my little nook in the world, I tried to be the bridge between stroke survivors, medical professionals, other. Stroke survivors, I just try to be a bridge. There’s not much more that I can do, which is a pretty good thing. And one of the big challenges that I face is hearing stroke survivors, no matter where they are in the world, saying, you know, insurance said I’ve hit a plateau, because, and it doesn’t matter their age. Bill Gasiamis 45:21 And in Australia, it’s a similar thing in that hospitals will make the decision that a patient has reached a plateau, whether it’s the public or the private system, and one of the other areas that they do that in is where I feel people are discriminated against is older age. So in our family, my brother’s father in law, had a stroke number of years ago. He’s almost 80 years old now, and when he was assessed and discharged from the hospital. I think it was really abrupt. Bill Gasiamis 46:02 Now, his stroke was about eight or nine years after my whole situation and my journey of navigating the hospital system, etc, and I feel like they kicked him out way, way sooner than they should have, making generalizations like that’s about all he can expect, expect to recover and so on. And then handballed him home to his wife, who’s similar age and who are caring for who are caring for a child who was born with cerebral palsy. So that’s really close to my heart. And I’m thinking, you know, they did a terrible thing, discharging this gentleman so so early. The Concept of Stroke Recovery Plateau and Its Implications Bill Gasiamis 46:56 Now, when I interview stroke survivors, I often hear “You know, they cut off my rehab because they said I’d reach the plateau.” And I feel like, and want to have a conversation around this. I feel like that word you’ve reached the plateau is just a term that insurance companies and hospitals use to remove somebody from the system. Bill Gasiamis 47:22 So that’s either costing them too much money, so that they can bring somebody else in a to create space, but also be that they’re more likely to get an outcome on give me a bit of an insight into what you feel like that plateau is all about, and why it even gets used in rehabilitation of people with neurological conditions. Dr. Matthew Ashley 47:52 Yeah, you know, it’s funny, Bill, you use that word plateau, and I don’t want to say that’s a dirty word, but you know, to me, it’s a word that I share your frustration with. We have a saying at our organization that “Patients don’t plateau, people don’t plateau.” I’m not done getting better in my life. So I don’t know why I would think that other people should be. Now that said, I understand the background of where the term comes from and it is important to be able to communicate as best we are able expectations and prognostic implications to people and their families. Dr. Matthew Ashley 48:42 So, you know, we know that recovery trajectories tend to be steeper earlier on than they are as time goes by, that said there are certain things that I think get frequently mentioned to patients when they’re early on in the course of their illness. And I think these things are said in in well intentioned ways, but they are not necessarily always interpreted or heard or or even said in the way that’s most beneficial. Bill Gasiamis 49:24 I’ll interrupt you for a sec. I’ll tell you what those things are. You’re probably never going to walk again, or you’re probably never going to go to work again, or you should think about retiring or and so on and so forth. A stroke survivors whinge about it still to this day, every opportunity they get, because they still happens so much and you’re probably never going to walk again. It seems to be a really disheartening way to have somebody you. Leave a hospital so you rehabilitated them. You’ve made them healthy enough to live. Bill Gasiamis 50:05 And instead of now encouraging them to take the next step, you’re going, we got you kind of there, but you’re probably not going to walk again. Out you go, it just seems so it’s so counter intuitive to say that I’m putting all this time, money, resource training, 100 years of medical knowledge, into keeping you alive and stopping you from having another stroke, but you’re probably never going to walk again. Dr. Matthew Ashley 50:39 Well, I would go further Bill and say, not only is that not helpful, it’s also probably wrong, because, at least as it pertains to people who’ve had a stroke, because the numbers will show that most people who’ve had a stroke particularly of the where you’re having that level of dialog and conversation, most of those folks will walk again, you know, and they’re given the right set of circumstances. So I that’s a big no no. I mean, I don’t know why that. I, yeah, that’s not something the one I think is more commonly said is putting a timeline on certain things. Dr. Matthew Ashley 51:26 Yeah, you know, if you get to the three month interval or the six month interval or the 12 month interval, that gives you a good idea of where things will be, and while, on some level, that statement, there may be some degree of accuracy to some components of it. I don’t think it’s helpful, and I think that it artificially places a barrier where none necessarily exists, and because people do continue to improve, not just through 12 months or 18 months or 24 months, but I mean, for very long period of time. Dr. Matthew Ashley 52:03 So, I think that’s discouraging, and I don’t know that it’s useful. I think it comes from a place that’s well intentioned, where, you know, often people are asking, what do we expect? And rather than having a a more nuanced and more difficult discussion that is hard, which is to say, you know, I can’t really tell you an answer to that. I can tell you some experience with it, but that doesn’t apply to you, because you’re one person, and your loved one is one person, and they’re going to experience their recovery trajectory as they experience it. Challenging the “Stroke Recovery Plateau” Dr. Matthew Ashley 52:50 I think people default to these sort of more simple answers, and this relates back to your plateau comment, because I think that idea of a plateau is part of the part of the problem, if you will. And and that isn’t to say that at some point pragmatic discussions about levels of care, you know whether people stay in ICU environments, whether people stay in hospital environments, whether they stay in rehabilitation hospital environments, whether they stay in facilities like ours. Dr. Matthew Ashley 53:31 Those discussions are important and they need to be had, but they don’t have to be had in such a way that places a limit unnecessarily on an individual’s recovery, prognosis, quality of life, etc. Am I drawing a meaningful distinction, or is it absolutely. Bill Gasiamis 53:53 Well I completely understand, and I think, I don’t think a doctor sets out to discourage, I don’t think a doctor sets out to possibly create a negative, a negative association afterwards. It’s just that there’s not a lot of thought put into what you said “How am I going to have the exit conversation with my patient?” Or “How am I going to open the first conversation.” I just and I also get it like I’m not having a go at physicians specifically more about the words that they use and their inability. Bill Gasiamis 54:48 And part of it is also their ignorance of I don’t know what it’s like to have a stroke, so you might see people having strokes, and you’re dealing with them all the time. You’ve never had one, and that’s really cool. Actually want you to have one so that part of it, it’s multifaceted, I suppose. What I’m trying to do is allay the concerns of the listeners who have had that comment made to them, and then take it to heart and then prove their doctors right instead of wrong. Bill Gasiamis 55:23 I would much rather say “You know what? Just if you’re not that kind of person, if you don’t do things just to prove people wrong, maybe you should start now.” This should be the timing, let’s just prove them wrong. Because wouldn’t it be great if you went back for a follow up appointment 12 months later and said “You were wrong, Doc.” You know, like, and it’s not because you want to have a doctor who’s wrong. It’s just because you want to, you’re going to break down this kind of barrier that doctors have around. Bill Gasiamis 55:59 “Can I be honest with this patient.” “Can I be honest by saying I don’t know, and I don’t have all the answers for you, and that’s all, that’s all that is.” I know that nobody becomes a doctor to then dis harden somebody on the way out and say to them “I’ve done all this stuff to help you out. And, yeah, forget about it, you’re done.” I know that doesn’t happen. Dr. Matthew Ashley 56:24 No, I think those kinds of comments again, they’re, they’re, they’re coming from a place of, of attempting to provide something, yeah, I just think they, I think they end up, as you mentioned, being net negative for the moment and the experience. And I think, you know, as people, but definitely as physicians and medical providers, we have to be humble and recognize when we don’t know things and knowing someone’s recovery trajectory from stroke. I mean, I’m getting a little bit grayer by the day, and I still don’t know. Dr. Matthew Ashley 57:04 So, I think you know, you have to balance the need that people have for getting information and some kind of conceptualization and an idea of what to expect with the downside of placing limits on people, and also Bill, I think it’s important for me to acknowledge, you know, my bias. We probably share the same bias in the sense that, you know, I see the people who make it to my level of care, and the people who we get the opportunity to provide care for, and in many ways, sometimes those are the outliers. Dr. Matthew Ashley 57:51 Those are the people who do, as you suggest, kind of buck the odds or and you know, I would echo your sentiment, you know, give yourself the chance as a as a person who’s experienced this, to maximize what what you can accomplish in the wake of it, I think, you know, don’t accept those limits on yourself, at least in terms of those kinds of broad statements. And as you get further out, there is a balance to accepting the new normal, while still striving for more okay and giving up there, those are different things. Dr. Matthew Ashley 58:38 And I think the the negative aspect of what we’re talking about is the component that might lead someone to giving up on something that otherwise might be attainable. And there that, again, we’re talking about stroke and recovery from stroke. There are other situations when you talk about spinal cord injuries or things of that nature, where you know, where a statement like, walking is probably going to be really challenging to attain, is more accurate. So again, we’re doctors, are people, and they have to learn things. Dr. Matthew Ashley 59:22 And sometimes, these are things that people have to learn along the way by being humbled by an experience like what you’re saying of someone coming in and defying what they expected. But I think I don’t know how many physicians are listening to this, but hopefully, maybe this is a way they can learn it. I think, you know, physicians learn from patients, the smart ones all the time. Bill Gasiamis 59:50 Yeah, that’s it. I think I’m telling stroke survivors patients to be the outlier. Aim for being the outlier and see where it falls. You might go for being the rare person who does the opposite of what their doctor said they would achieve. And you won’t know that unless you go for it. Bill Gasiamis 1:00:19 You’ve got to go for it, and you have to make sure that you put all your time, effort and energy into that and take a comment from a doctor as something that may have been inappropriately applied to your situation, because that doctor had a hard day and thought they were talking to a different patient, just put it down to a mistake. Dr. Matthew Ashley 1:00:48 Yeah, and ultimately, like I said earlier, I’m not done trying to make myself better, right in general, so I don’t think anyone should be right. We should always be striving for for more, and, yeah, I love that approach. I think it’s great, I think it’s, you know, people who are dealing with with recovering from stroke are going through so much, and that day to day, ups and downs can be so difficult on their own, let alone if you have this sort of broad, you know, negative limit that someone has put over your head. The Role of Nutrition in Stroke Recovery Dr. Matthew Ashley 1:01:37 So yeah, chalk it up to a bad day, chalk it up to a a bad doctor. Chalk it, I don’t know, you know, just but forget about it and move forward and try to get better. Bill Gasiamis 1:01:51 Your organization, Center for Neuro skills, I’m on the website right now, looking at the programs that it offers. You’ve got therapies are for, you know, you’ve got aquatic therapy, which I absolutely loved when I went through rehab. It made me feel safe. It made me feel like I can’t fall down. It was just, you know, it was amazing to be in a swimming pool and doing my walking rehab in there. You’ve got cognitive therapy counseling, which is just fabulous. I would have loved to be able to access counseling while I was in rehab. I did access it outside of rehab. Bill Gasiamis 1:02:32 So I was going to outpatient counseling. Probably at the beginning I was going, maybe I’d say once a month or twice a month, depending on how much mental challenge my new mortality had created in my Life. You’ve got education therapy, you’ve got neuro behavior therapy. I mean, you guys do so much occupational therapy, physical therapy, speech and language therapy, vestibular therapy, vision therapy, you’ve got it all. I love it. I wanted to ask you specifically about nutrition. Bill Gasiamis 1:03:20 It’s a big emerging intervention that people can use to make a massive difference in the way that they experience their body after stroke, particularly fatigue. Experiencing fatigue after stroke seemed to decrease when I changed my habit of eating a really high processed, large amounts of carbohydrate diet to a lot less of that, and then increasing my protein levels and my vegetables, that type of thing. Now, maybe you can’t answer this question, then that’s okay. But is there any work done in your organization that addresses people’s nutrition? Dr. Matthew Ashley 1:04:14 I mean, we certainly try so, the issue of nutrition is big, and I think what you just described sounds like a great move overall, in terms of just your general health, right? I mean, most of us, fortunately, we exist in a time in human history where we’re not just fighting for calories, right? We’re able to choose the kinds of calories we get and where they come from. We can choose them for different reasons. Dr. Matthew Ashley 1:04:49 We can choose them because we want to enjoy them right then, or we can choose them for better outcomes in terms of whatever that is, if we have specific concerns, if you know we’re diabetic or we have cholesterol issues or hypertension and whatnot. So, I mean, it sounds like the general thing that you did was a smart move, just any doctor would would paint that with a broad brush as a good choice in terms of the effects specifically that it’s going to have on neurological recovery. Dr. Matthew Ashley 1:04:49 I mean, I think in general, the things that we do that promote good overall health are going whether that’s controlling intake of carbohydrates with high glycemic index, etcetera, or controlling just our overall caloric intake, control, getting adequate protein, getting adequate fiber from those red and green vegetables. Those are all things that help promote general health. And General cardiovascular health is brain health. I mean, our brain is the same. We’re perfused in our brain. Dr. Matthew Ashley 1:06:02 We get blood flow from the same blood vessels we do in our heart and everywhere else. And there’s probably more to this story that has yet to be fleshed out, right? I’m not as familiar with some of this in terms of stroke specifically, and more so in terms of traumatic brain injury, but we know that, when there’s an insult to the brain from trauma, different factors relating to call it homeostasis, right inflammatory markers, cytokines, different patterns of activation of different cells, glial cells in our brains. Dr. Matthew Ashley 1:06:47 They are perturbed and that that persists for long periods of time. So, you know, I don’t pretend to be an expert on nutrition or on that other buzzier field, that it’s kind of the microbiome, right, and all of these things. I think anyone who purports to tell you they have all those answers, you should probably run the other direction, because they’re probably not being honest with you, but it’s definitely something where, in the coming years, decades, etc., we’re going to learn a lot more, and we’re going to know better how all of this is interacting with each other. Dr. Matthew Ashley 1:07:29 But what I would say is that if you noticed that difference, Bill, run with it, right? Stick with it. And I think there’s more to come on the front of you know, where, what are the effects of some of the various medical interventions that we have that are controlling, our appetite, our caloric intake, and having impact on satiety and other things. And it gets even more complicated when you start incorporating those things, and then when we have insults to the brain from trauma, but also from others, you can impact the the hormone systems of the body. Dr. Matthew Ashley 1:08:12 Because we don’t think of our brain as controlling all of these things, but it does. It controls things as simple as our heart rate and our respiratory rate and and our metabolic rate. So there’s a lot to unpack there. I don’t pretend to have all those answers, but I will say, I think what I advice I give to patients. Dr. Matthew Ashley 1:08:12 If they’re inquiring about their nutrition, is the things you just suggested, get lean protein sources, you know, get your red and green vegetables that have nutrients and fiber in them, that’s those are the primary components that, at least in the Western diets, tend to be areas of relative deficiency, right? And then avoid those. Bill Gasiamis 1:09:01 Cans of COVID. Dr. Matthew Ashley 1:09:02 Index carbohydrates. So, yeah. Bill Gasiamis 1:09:06 Look, it might be a little bit an unfair question. I didn’t ask it to put you on the spot or catch you out or anything like that, but it’s a common thing that people overlook. You know, I’ll interview stroke survivors to tell me that they’re eating healthier, and they’ll pick up a can of soda while we’re in the interview. It’s, I don’t know, maybe it’s my job to say you’re probably doing the wrong thing there, and maybe I have permission or not to do that during an interview. I don’t know, but it’s interesting that there’s still not enough conversation. Bill Gasiamis 1:09:36 I think, happening around the impact of nutrition. There’s a lot of new research coming out, and there’s a lot of people reporting on, when I say a lot of people, a lot of people in the medical fields are reporting on the benefits to the brain by changing the diet. And it’s exactly what you said, you see the same you. Diets being thrown around for heart disease, cancer risk reduction, all these things and often you don’t see them tied into brain health. Bill Gasiamis 1:10:14 And you have to hear that conversation from somebody specifically from your type of specialty, or one of the specialties around brain. And you know, there’s a psychiatrist releasing studies and books about nutritional psychiatry and how some people will respond, I imagine, in combination with other therapies, really well to changes in their diet and what we’re talking about reducing always are the things that I think the conversation started for me. Bill Gasiamis 1:10:14 At least I started to notice a lot more conversation around diet and the brain health, probably at the beginning of, say, 2013, 2014 somewhere there where it really started to take off. And people were just talking about, reducing white, highly processed breads, cereals and sugars. And that was my diet. I did basically that, what they said, reduced the amount of sodas I was drinking in a decreased amount of white bread I was drinking I was eating with every single meal. And stopped having cereal for breakfast, and my fatigue dramatically improved. Navigating Stroke Recovery Plateau : The Impact of Nutrition and Medical Guidance Bill Gasiamis 1:11:39 I stopped having sugar in my coffee, and that made a massive difference. It was kind of the thing that I could do to support my body, and didn’t have to outsource that onto my neurologists, my physical therapists, my cognitive therapists. You know, I didn’t have to do that as well. I could take that little responsibility, and I could control that really well. And I just feel like as far as the science is concerned. Bill Gasiamis 1:12:13 There still seems to be a little bit of a gap that needs to be made up by the medical industry about how to approach nutrition, and I understand there’s more to it than than what I’m saying. There’s more to it as to why that might be the case. A lot of the times that might be the case because, again, physicians are just not skilled in that area. They’re not educated in that way, so they can’t advise something that they’re not practiced in. Dr. Matthew Ashley 1:12:49 Yeah, I think you’re right. And I think you know, the area of human nutrition is, you know, it’s a battle zone. Sometimes, I think people are there. There are some, what I would say, entrenched camps, who have very strong feelings about about one thing or the other. But where, I think there does seem to be consensus, if you will, right is that you know caloric values matter and making sure that you know you’re, you’re adequately controlling your overall level of energy intake, right? Dr. Matthew Ashley 1:13:36 And I think I don’t know how it is in Australia, I know that here in the States, you know, unfortunately, many people here are suffering from, like, energy toxicity, right? We’re, like, taking in too much, and we need less, given what we’re doing with that energy. So, you know, the obesity epidemic is real, and it has very real consequences, physiologically, and where I think, where I think things get a little more squirrely and difficult to discern, where the truth is, when you go kind of beyond where I’ve said, which is okay, we have consensus, calories matter. Dr. Matthew Ashley 1:14:16 You need adequate protein, you need adequate fiber and nutrients, simple carbohydrates, probably not great for us in large amounts. Everything beyond that starts to get a little more difficult, but I think from a pragmatic perspective and an ease of use perspective for, you know, frankly, just people in general, but definitely patients focusing on those variables can go a long way in making things better. And the other part, component of it that we haven’t really touched on right is. Dr. Matthew Ashley 1:14:53 And I think it’s interesting, and maybe you’re the person you’re referencing that comes to nutrition from a kind of psychiatric. Perspective, I think it’ll be a fascinating thing to do, because ultimately, our diet and our eating is human behavior, right? Which is a purview of our, you know, our whole body and system. So we know we can alter how people feel about eating now with some of these GLP one inhibitor medications. Bill Gasiamis 1:15:27 Ozempic, for example. Dr. Matthew Ashley 1:15:29 Yeah, and it’s not an I think the notion that that eating and diet and nutrition are all matters of sort of choice and willpower and whatnot. I think it’s dated, I think, and we know this in the neurological setting, in terms of brain injury, because we have people who you can have the right injury to the brain, where people will not appropriately satiate and they will eat far beyond what they should, and from a health perspective, and also what they did before they had this brain injury. Dr. Matthew Ashley 1:16:20 And there’s a neuro term for it, because we have to have words for things, so we can sound smart, right? But this is hyper faci. This is known. You can induce this if you damage someone’s brain in the right way. So that tells us that this is not a matter of, necessarily, always, decision making or or willpower. It’s, you know, so we, if we have interventions that work, we need to use them. So the role of all of this is still evolving. Bill Gasiamis 1:16:49 I love that you said that about the possibility that somebody could injure their brain in that particular place. That changes the way that they experience satiation or not, because I’ve met stroke survivors who do not get the signal to eat, who actually forget that they need to eat, and they have formed a new habit, and they eat when other people in their family eat. And as a result of that, they’ve lost, two thirds of their body weight, they were overweight, and they had a stroke, and then, as a result of that, they don’t get the signal for hunger. Dr. Matthew Ashley 1:17:29 Well, they don’t, there’s that. There’s also, you know, I mean, this, it’s very, very complicated to try to unpack all of this. But you know, we also know that our nervous system controls our gut too, and our gut has its own nervous system, and it has that’s what promotes motility in the gut and moves food along. And if it’s moving relatively faster or slower out of your stomach, you’re going to feel more or less full from that standpoint. And then you’re going to impact absorption, potentially of different things. Dr. Matthew Ashley 1:18:10 And so it gets to be because, exactly as you said, you can have people who, in the wake of a neurological insult, they either don’t satiate so they just want to eat all the time. Or they have difficulty with controlling their behavior from an inhibitory standpoint, and so they see food and they want to eat it. Or you can have the opposite, like you’re saying, where maybe they have a really big problem just with initiation in general, so they don’t initiate eating. Or maybe their gut isn’t quite working the way that it was before all of this happened. Dr. Matthew Ashley 1:18:52 For any of various and sundry reasons, and so they feel full all the time and they don’t want to eat. Or, you know, their food moves more slowly, and they don’t absorb as well, or, you know, the certain essential amino acids aren’t getting absorbed. And there’s a whole host of possibilities there that are complicated, and I don’t pretend to understand them, nor do I think they are understood, but they’re there to be explored. Dr. Matthew Ashley 1:19:20 And for an individual who’s going through that, I think at least understanding that it may be connected is a good starting place to try to approach things from a practical perspective. Dr. Ashley’s Organization and Its Services Bill Gasiamis 1:19:33 Yeah, I really appreciate your insights into that. The things certainly that I haven’t thought about as well, and I don’t begin to know the first thing about I just know what worked for me, which was just very simple changes. And they would probably work for anybody, regardless of whether they’re experiencing a stroke or they’ve had a heart attack or cancer or whatever. It would just make life a little bit easier. And with diet was one of those things that I knew I wasn’t doing well, that I could have improved, and then became necessary for me to improve after I became unwell. Bill Gasiamis 1:20:16 As we wrap up, I just want to make sure that people who may want to reach out to you know where to go. Tell me the name of the organization, how people come into your organization to work with your team, like, what stage of of their recovery, perhaps, does that happen? And yeah, just give me a little bit of insight into that. Dr. Matthew Ashley 1:20:43 So, again, our organization is called Centre for Neuro skills. Centre is actually spelled C E N T R E, we can, you can find us on online, you know, in your favorite search bar du jour, or you can throw in neuroskillsdot.com, and that’ll bring you right to our page. Our page has a tremendous amount of information about things like what we’ve been talking about as well. So it’s a great resource, just for people in general, who have experienced any kind of acquired brain injury. Dr. Matthew Ashley 1:21:16 Whether that’s traumatic brain injury, stroke or there are many other buckets we in terms of how people find their way to us. You know, we really again, fill that need between either hospital based rehabilitation environments and home. That’s kind of in my mind, the ideal scenario is don’t wait, you know, and get home and realize six months down the line that you know, you really would benefit from something like what we provide. You know, seek out services, whether it’s with us or someone else you know, like us. Dr. Matthew Ashley 1:21:57 And there are other organizations out there that, do you know similar things? You know, take advantage of that. I guess if you’re especially if you’re in the states and it’s an option for you, but if it’s with us, great and we can also help folks who have, maybe they’ve been at home after the hospital, and they’ve realized, I’m I need a little bit more than a couple hours a week of physio and OT and speech in that fragmented kind of environment that we described. Dr. Matthew Ashley 1:22:37 So, yeah, so there’s contact information for how to reach out on the website, my information and bio and all of that is, is on there. I am one tiny portion of a much larger thing, and I stand on the heels of every one who built the organization before me, and everyone who does it now. So I’m just a small part of it. I think it’s much it’s much broader in terms of people who might want to reach out and work with us. I mean, I’m totally biased. Dr. Matthew Ashley 1:23:07 I think we have a great organization that, you know, the work that we do is so inherently gratifying that I think it’s a great place to work. But you know, people who come from any of the backgrounds I mentioned on the clinical side, whether that’s medical, nursing, physical therapy, occupational therapy, speech, case management, social work, backgrounds, counseling backgrounds, substance abuse backgrounds, we need people from all that to help people. Final Thoughts and Resources Dr. Matthew Ashley 1:23:38 And then, of course, we also have a lot of administrative and other kind of back of house people that really do great work for us too, and help support the clinical mission by helping the business mission. So yeah, people who are interested in working with us, please. There’s contact information on there for our various occupational avenues to. Did I cover everything you asked me? Bill Gasiamis 1:24:09 I think so. You think really well. Dr. Matthew Ashley 1:24:11 Yeah, the other thing I will say is for people who are recovering from stroke and suffering from stroke, I’m also an as in regards to these organization, we’re involved with American Heart Association. Lot of information about stroke in general that is written at a level for people to understand is available through the American Heart Association’s websites, guidelines, etcetera. So that’s another good resource for people to to kind of start with. Bill Gasiamis 1:24:39 We’ll have all the links in the show notes anyway, for people to find you guys and yourself, I really appreciate your time. Thank you so much for joining me and answering my questions. Dr. Matthew Ashley 1:24:49 Yeah, I appreciate being here. Thanks very much, and again, congrats on building such a great platform. It really is something special. Bill Gasiamis 1:24:59 Well, that brings us to the end of this eye opening episode with Dr. Matthew Ashley, his perspective as both a neurologist and legal advocate challenges the traditional concept of a recovery plateau, offering hope and practical strategies for stroke survivors who are determined to keep improving. Before we wrap up, I want to thank everyone who’s part of this incredible Recovery After Stroke Community. Your support through comments, ratings and shares on YouTube, Spotify and iTunes is what keeps this podcast going. Bill Gasiamis 1:25:33 If today’s episode resonated with you, please consider leaving a five-star rating or a like and a comment. It truly helps others discover the hope and inspiration found here. For more information on Dr. Ashley’s work, please visit his website at neuroskills.com to learn more about his comprehensive approach to stroke recovery. And if you’d like to support the podcast, head over to patreon.com/recoveryafterstroke . Bill Gasiamis 1:26:02 Every contribution helps me bring more stories, resources and hope to stroke survivors around the world. Thank you for listening today. I look forward to bringing you more inspiring stories and practical insights in the next episode. Until then, take care and remember your recovery is possible one step at a time. Intro 1:26:23 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gasiamis. Intro 1:26:53 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. 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We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there. The post Why “You’ve Hit a Plateau” in Stroke Recovery Is a Myth – And How to Keep Improving! appeared first on Recovery After Stroke .…

Recovery After Stroke

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Surviving Two Strokes: Adam Jackson’s Inspiring Adaptive Sports Journey 1:07:58

19 дней назад1:07:58

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Types of Stroke: Understanding the Differences and Adam Jackson’s Journey Introduction: What Are the Types of Stroke? A stroke occurs when blood flow to the brain is interrupted, depriving brain cells of oxygen and causing damage. It is a leading cause of disability worldwide, affecting millions each year. However, not all strokes are the same. Understanding the types of stroke , their causes, and their impact on survivors can help individuals seek the right treatment and rehabilitation strategies. In this article, we will explore: The three main types of stroke Common symptoms and risk factors Diagnosis and treatment options Adam Jackson’s inspiring story of stroke recovery and adaptive sports Prevention tips and lifestyle changes Encouragement and resources for stroke survivors and caregivers The Three Main Types of Stroke Strokes are categorized into three main types, each requiring different treatment approaches and rehabilitation strategies. 1. Ischemic Stroke An ischemic stroke is the most common type, accounting for about 87% of all strokes . It occurs when a blood clot blocks an artery, cutting off oxygen to the brain. Subtypes of ischemic stroke: Thrombotic Stroke: Caused by a clot forming in an artery supplying the brain. Embolic Stroke: Caused by a clot that forms elsewhere in the body (often the heart) and travels to the brain. Treatment: Doctors may administer a clot-busting drug (tPA) or perform a mechanical thrombectomy to remove the clot. 2. Hemorrhagic Stroke A hemorrhagic stroke occurs when a blood vessel in the brain bursts, leading to bleeding. This can be caused by high blood pressure, aneurysms, or arteriovenous malformations (AVMs). Subtypes of hemorrhagic stroke: Intracerebral Hemorrhage: Bleeding occurs directly into brain tissue. Subarachnoid Hemorrhage: Bleeding occurs in the space between the brain and thin tissues covering it. Treatment: Surgery may be needed to relieve pressure, and medications help control bleeding and lower blood pressure. 3. Transient Ischemic Attack (TIA) – The “Mini-Stroke” A transient ischemic attack (TIA) is a temporary blockage of blood flow to the brain, typically lasting a few minutes to hours without causing permanent damage. TIAs are often warning signs of a future ischemic stroke. Treatment: Lifestyle changes, medications, and monitoring are essential to prevent a full stroke. Symptoms and Risk Factors of Stroke Common Stroke Symptoms (Remember F.A.S.T.) Face drooping: One side of the face may droop or feel numb. Arm weakness: Difficulty raising one or both arms. Speech difficulty: Slurred speech or trouble speaking. Time to call 911: Seek emergency care immediately. Risk Factors for Stroke Controllable Factors: High blood pressure, smoking, diabetes, high cholesterol, obesity, and physical inactivity. Uncontrollable Factors: Age, family history, genetics, and prior strokes or TIAs. Diagnosis and Treatment of Stroke Doctors use various tools to diagnose and assess stroke severity , including: CT Scan or MRI: To detect bleeding or blockages in the brain. Carotid Ultrasound: To assess blood flow in the neck arteries. Echocardiogram: To check for heart-related causes of embolic strokes. Treatment Approaches: For ischemic stroke: tPA (clot-busting drug), mechanical thrombectomy, blood thinners. For hemorrhagic stroke: Blood pressure management, surgery (if needed), rehabilitation. For TIAs: Preventive medications, lifestyle changes, close monitoring. Adam Jackson’s Stroke Journey and Adaptive Sports Recovery A Veteran’s Unexpected Stroke Experience Adam Jackson, an Australian Army veteran, experienced his first stroke in 2010 while deployed in Afghanistan . His symptoms included leg weakness and temporary paralysis, but his condition went undiagnosed. Overcoming Challenges Through Adaptive Sports Adam’s recovery was challenging, especially during the COVID-19 lockdown , which restricted hospital visits from family and friends. Despite this, he remained determined to rebuild his strength. His breakthrough came when he discovered adaptive sports , including: Indoor rowing Swimming Sitting volleyball Nordic skiing Adam now competes in Invictus Games and Warrior Games , proving that stroke recovery is about pushing limits, finding new passions, and staying resilient. Stroke Prevention: Reducing the Risk Preventing stroke is possible through lifestyle changes and medical management. Top Stroke Prevention Tips: Monitor Blood Pressure: Keep it under control. Maintain a Healthy Diet: Focus on whole grains, fruits, and lean proteins. Stay Active: Exercise regularly. Quit Smoking: Smoking increases stroke risk significantly. Manage Stress: Meditation and relaxation techniques can help. Regular Check-ups: Detect and manage risk factors early. Encouragement and Resources for Stroke Survivors Recovering from a stroke is a journey, and you are not alone . Whether you’re facing ischemic stroke recovery , adaptive sports after stroke , or looking for mental health after stroke support, there are resources available: Support Groups: Join local or online stroke survivor communities. Rehabilitation Centers: Work with physical therapists for ongoing improvement. Books & Podcasts: Learn from stroke recovery stories, like The Unexpected Way That a Stroke Became the Best Thing That Happened . Adaptive Sports Programs: Engage in activities that help regain strength and confidence. Surviving Two Strokes: Adam Jackson’s Inspiring Adaptive Sports Journey Types of stroke impact recovery in unique ways. Adam Jackson shares how adaptive sports helped him reclaim his strength after two strokes. Adam’s Instagram Highlights: 00:00 Updates and Gratitude 01:48 Introduction to Adam Jackson 03:58 Adam’s First Stroke in 2010 08:06 Adam’s Second Stroke in 2020 12:52 Recovery and Deficits 17:13 Adam’s Career and Military Service 24:19 Transition to Adaptive Sports 31:35 Challenges and Motivation 42:32 Advice for Stroke Survivors 51:46 The Mental and Physical Benefits of Training 1:02:12 Conclusion and Final Thoughts Transcript: Updates and Gratitude Bill Gasiamis 0:00 Hello everyone, and welcome back to another episode of the Recovery After Stroke Podcast. Before we dive into today’s inspiring conversation, I wanted to share some exciting updates and express my gratitude to this incredible community. First off, a massive thank you to all my amazing Patreon supporters, your contributions are truly making a difference by helping cover the costs of producing this podcast. Because of your support, not only is this show accessible to you, but it’s also available for other stroke survivors who may not be in a position to contribute financially. Bill Gasiamis 0:40 Your generosity ensures that this resource continues to reach those who need it the most another simple but powerful way to support the podcast is by listening to the ads without skipping them. It may not seem like much, but just letting the ads play helps keep this podcast going, allowing me to bring you valuable content week after week. Speaking of growth, we’re now at 49 five-star reviews on Spotify, and the YouTube channel is on track to surpass 5000 subscribers in the next 30 days. Bill Gasiamis 1:15 More and more stroke survivors and caregivers are finding this content, leaving comments and engaging in meaningful conversations, I couldn’t be more grateful for this growing community. A huge thank you goes out to those who have read and reviewed my book The Unexpected Way That A Stroke Became The Best Thing That Happened . Every review and message inspires me to keep sharing these conversations. If you haven’t picked up your copy yet, you can find it on Amazon or at recoveryafterstroke.com/book . Introduction to Adam Jackson Bill Gasiamis 1:48 And if you’re looking for additional guidance, remember about the narrated video lessons at recoveryafterstroke.com/learn , these lessons created by a stroke survivor for stroke survivors are designed to help you take actionable steps toward reclaiming your life after stroke. Now, let’s talk about today’s episode. I’m thrilled to be joined by Adam Jackson, an Australian Army veteran and stroke survivor whose story is nothing short of incredible. Adam experienced two strokes 10 years apart, the first of which went undiagnosed while he was deployed in Afghanistan. Bill Gasiamis 2:29 When his second stroke hit in 2020 he faced complete paralysis on his right side, but rather than let it define him, Adam took on his biggest challenge yet, rebuilding his life through adaptive sports. Adam’s journey is one of perseverance, mindset shifts and finding purpose through movement and competition. In this episode, we’ll explore how he transitioned from recovery to competing in the Invictus Games, what adaptive sports have meant for his rehabilitation and how he continues to push his limits. Let’s get started. Adam Jackson, welcome to the podcast. Adam Jackson 3:09 Thank you, Bill. Bill Gasiamis 3:12 Tell me a little bit about what happened to you man. Adam Jackson 3:13 Okay, so in 2020 I had a massive, so I woke up to about 5am in the morning, and we were obviously, my wife was asleep. I said ‘Do you want to go to the gym, or can I go? And she’s like ‘You go. Like, okay, cool. I’m downstairs, started doing some laundry, and then I just sort of was on the ground. Like ‘What am I doing here? Unless looked up the washing machine must have had a fall or something that I just didn’t need to grab the washing machine, pull myself up, go to the couch, couldn’t do it. Was missing my right arm. I was like ‘Where’s my right arm? Adam’s First Stroke in 2010 Adam Jackson 3:58 Like, looking around, couldn’t see it didn’t want to wake my wife up against I started thinking about calling out to the girl my because I got two daughters. They’re both 11 and 13 now. But then my wife heard me mumble something, so she came down, saw me, said ‘You’re having a stroke. A mum with something again, she called the ambulance, took a while to get there, then I got transferred to hospital on the Sunshine Coast. Adam Jackson 4:34 They did some scans and stuff, and then they sent me to Brisbane, to the Royal Brisbane Hospital, and that’s where I spent my first week after my stroke. So I had a left side MCA, and I was completely paralyzed MRI, MCA. Bill Gasiamis 5:00 What’s an MCA? Adam Jackson 5:02 Good question, a something cerebral. Bill Gasiamis 5:12 Let me check since I asked you left side. MC, cerebral, left middle cerebral artery is the artery that was impacted perhaps. Adam Jackson 5:30 Yes, that’s it, yeah. Bill Gasiamis 5:32 And you had an ischemic stroke? Adam Jackson 5:35 Yes. Bill Gasiamis 5:37 Alright, left middle cerebral artery. I’ve got no idea where that’s located. It’s probably somewhere in the brain, right? Adam Jackson 5:45 That’s alright. It didn’t so that was another may 2020 Yeah. Bill Gasiamis 5:52 That was in 2020 but you had a stroke in 2010? Adam Jackson 5:56 Yes, they didn’t know it was a stroke back then. So I’m a veteran of the Australian Army. So I was in Afghanistan at the time, in 2010 again, really, so I woke up we’re in a room like four people. Car was getting changed to go call my wife Kate, stood up my right side leg felt funny. You know how you get pins and needles when you sit on your leg too long, or that sort of thing, it felt like that. I was like, that’s weird, and then I just lost complete feeling in my right leg. I was like ‘That’s not good. Adam Jackson 6:45 Then my left leg started going and I was like, because we were in bunk beds, and there wasn’t anyone on the top bunk, but I was holding onto the bunk. And then my left leg did the same thing, and then I collapsed on the floor, and I remember feeling like my legs underneath twitching, and I had to, like, grab them and throw them out. And I didn’t have pants on that at that stage. So I was sitting there going, I’m gonna have to call someone to come and put my pants off and take me to the hospital, and but the feeling came back. I was like ‘Oh, that was weird. Adam Jackson 7:25 Got dressed, went downstairs, spoke to my wife on the phone, started to get ahead from there, said ‘You know, I’m going to get back to my room. And just got worse from there, so that was thrown up, went back to bed, and then I couldn’t get out of bed, so I’d call someone to help, and they helped me into the car, took me to the roll three hospital at canter airfield. They did somehow, like heaps of scans and stuff, and I was pretty much out for that day, they couldn’t find out what was wrong. So they couldn’t figure out what was wrong with me. Adam’s Second Stroke in 2020 Adam Jackson 8:07 They thought it was meningitis or some thought so autos. But then they just, you know, I went back spent, I think, not one night on the hospital, and then went back to my room, where I spent like, five days just recovering slowly. Again, it’s that fatigue, and then a lot of stroke survivors talk about that fatigue, but that stroke was like that for weeks and weeks where I just fatigued. Couldn’t do my normal stuff, but I was fine. Adam Jackson 8:44 Didn’t investigate it the first stroke. So it was a tiny stroke, so when the big stroke happened in 2020 the doctors just like, Has anything happened like this before? And we talked about that, and then they got the scans back, and they can see the old in fact, where the injury, old injury was, and then this injury was, like, basically around that. So, yeah. Bill Gasiamis 9:10 So what do they reckon the causes two ischemic strokes 10 years apart? Is there an underlying cause? Adam Jackson 9:18 Yes, it. I had a PSO, and you can ask me what that stands for. Bill Gasiamis 9:25 Patent Foramen Ovale. Adam Jackson 9:27 That’s it. Bill Gasiamis 9:28 It’s a hole in the heart. Adam Jackson 9:30 Yes. So I had one of those, and they that’s from skirts, that’s what they say caused it, probably, as you know, one and I think three people have one or pretty common, but obviously a lot of people, it doesn’t cause strokes in everyone. But after two, they’re like ‘Okay, we go close that hole up. Bill Gasiamis 9:52 Let’s take a quick pause here before we dive back into Adam’s inspiring story and his journey through adaptive sports. I want to take him. Moment to express my gratitude to my Patreon supporters, your contributions keep this podcast going, ensuring that it remains accessible, not just for you, but for other stroke survivors who may not be in a position to provide financial support. If you’d like to be a part of this and help sustain the podcast, you could check out my Patreon, at patreon.com/recoveryafterstroke . Bill Gasiamis 10:27 Okay, so the first time they did work out that perhaps it was the PFO or they didn’t investigate it. Adam Jackson 10:36 So my first stroke, they didn’t actually know it was a stroke until my second massive stroke. Bill Gasiamis 10:44 Yeah, wow. So how do you recover from a stroke when you have no idea you had a stroke 10 years earlier? Adam Jackson 10:52 It’s lucky, I suppose that it wasn’t a big stroke. I mean, the doctor said because they did the scans so early on that sometimes it doesn’t show up until later on the injury. So that’s why they didn’t pick it up. And I mean, I was in Afghanistan at the time, so you know, as good as the medical and you know, the doctors and stuff over there are fantastic. Adam Jackson 11:23 I mean, it’s not a proper hospital by anything, but they still had scanners and stuff, and like, obviously, what my injury was, or my stroke, wasn’t anything compared to the other soldiers and stuff, but they suffer. So, yeah, just different injuries that. Bill Gasiamis 11:52 So this one in 2020 we’re talking about almost lockdown. Were you in lockdown? What was the situation there with the medical situation? Because that’s when March 2020, was when I know Melbourne locked down like nothing else you’re in Brisbane. So what was that like? Adam Jackson 12:16 Took a couple of weeks. It was okay when I was in Brisbane, but when I went back to sun and coast, I think it was like, was like one or two weeks later, probably a week later that they started locking down the hospital. So my kids couldn’t come up to the ward, because I went into the stroke ward for, I think, one or two days, and then I got transferred to the rehabilitation ward, and they locked it down, so it was only like my wife that could come and visit me. So they limited numbers of people that come up and see me. Recovery and Deficits Adam Jackson 12:52 Which sucked when you’re trying to recover from such a massive stroke. And having that support at the start was absolutely important for recovering, because the kids could come watch me do my physio, you know, try to get the movement back in my right side, and then just cut that out, was devastating. Bill Gasiamis 13:19 So right now, what are your deficits? Adam Jackson 13:23 I’ve still got deficit in my leg, my right hand is non-functional. And then I’ve still got deficits on my riders, but as well. So like my ankle joint, my hip, knee, sort of, I sort of explain it that, like my bigger muscles turned on pretty quickly, because I was fit before my stroke, they could come back pretty quickly, and you could switch them on. But the little muscles, you know, in the hand, there’s, like, so many intricate muscles that need to work and to actually make that connection is just, it’s hard. Bill Gasiamis 14:03 So, yeah, does that mean you’re able to walk? Adam Jackson 14:06 Yep, I can walk and I can run. Yeah, took me three months from not being able to walk to being sort of running again, and that’s when they kicked me out of the hospital because they’re like ‘You can, you don’t need to be in rehab for it. I was like ‘Okay. Bill Gasiamis 14:25 Yeah, well, you don’t need to be in rehab to learn how to walk again or run, but you probably need to be in rehab to use your arms. Adam Jackson 14:34 So I pretty much before I left hospital, either organized OT, so Effie Simpson, she’s amazing, and I still see it. So, you know, four years later, I still do physio, I still do OT, I still do Rehab per se, or, you know, to maintain that muscle mass and maintain that movement. I’m still doing stuff, it just never ends, and if you stop, it’s now, obviously you get backwards. Bill Gasiamis 15:13 So who did you mention I missed that? Adam Jackson 15:19 Effie Simpson. Bill Gasiamis 15:22 Amazing, okay. So you see Effie, that’s why we’re connected. That makes sense now, that’s it. Adam Jackson 15:29 Yeah. Bill Gasiamis 15:30 Okay, so with your deficits, are there any cognitive deficits, any other challenges that you deal with on a daily basis that are not related to the physical part. Adam Jackson 15:43 So I still have word funding difficulties, spelling difficulties, my mind will just go blank, like, how do you spell “There”? Or, you know, just common words. Bill Gasiamis 15:59 Which “There”?, though, because I get stuck on “There” all the time. And where I get stuck on “WHERE” as well. Where. Where are they? All the wares I don’t know which one to use, never. Adam Jackson 16:07 Yeah, I teach my girls as for the bear, where you going? Something like you’re going there, I say “Here, There, every where.” Then you know how to spell, but sometimes it works. Bill Gasiamis 16:29 ERE and their, it’s their ball, THEIR, and they are, They, THEY. I know all of that, but in a sentence, sometimes, it just doesn’t, it just doesn’t flow. Like, can’t just slot it in the right one, and especially with the wares, you know, where, we’re and where, and that’s been for me, a challenge, like since almost day one. And it’s such a it’s not a real struggle, but it’s such a really weird thing to be aware of and notice and not be able to just get it right. Adam’s Career and Military Service Bill Gasiamis 17:13 And I always have to get a pen out and write them all down and see them all and then go again. And if I’m not using a computer which will auto correct, it’s just fascinating that it keeps happening. So your what kind of work? What were you doing in 2020? Were you still in the armed forces? Adam Jackson 17:39 So I was actually a reservist at that time. So I did 12 years full time, and then 3 years part time reserved time. So I was actually my full time job was, I was a fly in – fly out electronics technician, working for BA time and again. Luckily, I wasn’t at work, because I probably would have died. Adam Jackson 18:07 So you don’t quite contact because you’re on 12 hour shifts. If it’s your 12 hour off, don’t really see anyone except, you know, breakfast, dinner or lunch. And it’s a small camp, so there’s only like 20 people on on site. So again, you’ve got to count the blessings when this happens, when you have a medical professional for a wife. Bill Gasiamis 18:35 That helps a loss. Adam Jackson 18:37 Yes. Bill Gasiamis 18:38 How many years were you in the army? Adam Jackson 18:40 12, it’s peak 15 in total. Bill Gasiamis 18:45 How old were you when you joined? Adam Jackson 18:49 25 I joined later. Bill Gasiamis 18:53 Yeah, that’s alright. 25 so you’re in there for 12 years. And then when you’re in the army. How many places did you deploy to? Had you been to? Adam Jackson 19:05 I’ve been to Afghanistan twice, which, again, actually really enjoyed it being in the Army. I was a Navy and legs technician, so I used to work on the Chinook helicopters. And to be there, you know, this is Kandahar Airfield is massive, like 30,000 people on site. There’s like six messes, there’s shops you can go shop at, there’s the PXS. It’s just, you know, it’s like a little mini city. Adam Jackson 19:38 And then for like, an aviation person, see all the allies, helicopters, aircraft, jets. It’s just it was awesome. Good experience, you know. And people at home don’t like the war, or didn’t at the time. Bill Gasiamis 20:06 It wasn’t a popular war. Adam Jackson 20:08 No, not at all. But I explained it to someone one time and said “No, if you were an engineer, would you were like to work on models for the rest of your life?” And they’re like “No.” I said “See, why do you want, like a defense force member to just stay at home and do exercises, as opposed to going overseas and helping people and doing their job for real?” Because it’s not like the Australian Defense Force is not about the wars, it’s about helping people, you know, doing the humanitarian aid. Adam Jackson 20:42 When there’s psych what do they call that? Tsunamis, you know, fires, floods, cyclones. That’s what we’re there for, and that’s what we want to do now. We wanted to get to the poison for those things, to help people. It’s not about so I suppose, because we’re like, because I was in the defense force, you have a different perspective of what we actually do. Bill Gasiamis 21:14 I suppose the purpose of joining the defense force is to deploy. That’s the whole point. Adam Jackson 21:20 Exactly, yep. Bill Gasiamis 21:22 Being a reservist is maybe a different thing. Perhaps trains you to a certain extent, but the whole purpose is to be a reservist. It’s not to be exactly deployed, right? So you’re deployed and you your role meant that you didn’t specifically see any the theater of Wolf on the front line or anything like that. You didn’t see that part of it? Adam Jackson 21:49 Not really. I’m like, we still got it. So the Taliban used to send, like, 105 mill rockets. So they had, like a timer. So they set it, build it like a dirt mound, and then just sort of roughly payment. And then they set a timer, like an egg timer or something, so it set off that they wouldn’t be anywhere near where that came from. You get rockets daily landing on base. One hit one of the three concrete accommodation blocks. Adam Jackson 22:33 One of the rockets hit the one next to us completely destroyed the room, but he was out having a smoke at the time. So, yeah, it’s just you, and you hear a lot of stories about people who weren’t in the room when at the time. Bill Gasiamis 22:51 And reason I was asking about your career and where you work was kind of to try and understand, like, what you’re made of and and how you applied your training, and the things that you went through, the tough times being deployed, getting ready to deploy, all that kind of stuff. How do you apply that to your stroke recovery? Is there a transfer of skills into stroke recovery? Do you use what you’ve learned in the army to get you through those hard times of stroke? Adam Jackson 23:34 Yes, so I was always a positive person before I joined the Army, and I think mostly that positivity helped me not recover but get through those hard times. But in the Defense Force, they teach you just to keep going like you can’t stop because there’s someone depending on especially with the helicopters, if we don’t fix our helicopter, that could mean that someone needs a like a medical evacuation, can’t get back, or the troops on the front line can’t get picked up when they need to say “It’s very important to just do your job, do it well.” Transition to Adaptive Sports Adam Jackson 24:19 Doesn’t matter what you’re going through, you got to think about the other people as well that are depending on you to do your job. I think that sort of transfers into my recoveries, that just instead of other people depending on, or people that I don’t know depending on me, it’s my family that you know, I have to that depend on me, and I depend on them to get better, to put to live, so that I’m there for my family and they’re there for me. Adam Jackson 24:53 So instead of, that’s my inspiration, I suppose you could say, is to get better with my family. You know, they were there from the start, they’re still here now. So, you know, supporting me in whatever I want to do in my recovery, as you know, recovering at the stop. Bill Gasiamis 25:17 Yeah, you were a reservist in 2020, but were you also working? Did you have a job? Were you full time employed? Adam Jackson 25:28 Yeah, so I was working the fly-in – fly-out as an electronic section. Bill Gasiamis 25:35 Yes, fly in – fly out. So what kind of travel arrangements did that entail? So how long would you fly out for? Adam Jackson 25:46 I was away for 15 days, and then I was back 13 and two of those 15 were travel days. So it’s basically 13 days off, 13 days at home, and then two travel days in between. So, pretty good roster. I mean, is awesome to have, yeah. Bill Gasiamis 26:06 Pretty good roster. When you’re flying out, how far are you flying out? Where are you going? Adam Jackson 26:14 I was went from Brisbane to Longreach and then from Longreach with a two hour drive to the radar site. Bill Gasiamis 26:20 So, and since then, have you been able to get back to some kind of work at all? Adam Jackson 26:30 Not really, no. So I’m retired now, and I think my job or transferred to my sport now, so and my is not my passion, but because my rehab, you know, I wanted to get better, sort of blended into the sport path. So, like at the start of the year, I was selected to do by Invictus Australia, to go over to America and do the Warrior Games in June, which is awesome experience, because that’s for the winded, wounded, sick engine soldiers. So and could be current serving or former serving members. Adam Jackson 27:14 And then again, I got selected to go to Invictus in Canada, in Vancouver in February next year. So again, I’m training for that, but before that, it was just training to get better. So to have a goal now is amazing, you know, because I think you need those goals yourself, and it doesn’t matter what how big that goal is, but have that goal to aim towards, because otherwise people lose interest in what they’re doing in their rehab. Bill Gasiamis 27:50 So what sport are you participating in? Adam Jackson 27:55 At Invictus? I’m doing indoor rowing, swimming, sitting volleyball and Nordic skiing. Bill Gasiamis 28:05 Is that enough or what? Adam Jackson 28:07 Well, they worry, I had five sports. Bill Gasiamis 28:11 Yeah, are you training and participating in those sports all day, every day, every week. Adam Jackson 28:19 Indoor rowing, yes, swimming, I like train in. I’m actually in Melbourne at the moment, so just yesterday, did the High Rocks race. So anyone know what High Rocks is? It’s like a fitness race, it’s awesome. And someone suggested it to me last year, to my wife, because she’s pretty really hit as well. And they suggested, it hurt, and I looked at them, went “Nah, that’s like crazy.” But I looked into it because a lot of sports have the adaptive categories. So I looked into it because their motto is “It’s a race for everybody.” Adam Jackson 29:13 So I was like, okay, and I sent a message and said “Do you do adaptive?” We do it’s in a draft edition, but we do have divisions for adapted athletes, so my wife and I did the Brisbane one in August, which is amazing, but again, it didn’t really count for anything. So I’ve been trying to push to get it included. And this is the first Melbourne yesterday had their first official adaptive divisions in the High Rocks race, in the men’s and open men’s and women. So the women are running racing today. It’s just it’s good to have that there, I standard that goal. Bill Gasiamis 30:01 What does High Rocks involve? Though, it sounds weird, strange, yes. Adam Jackson 30:08 So basically, there’s eight one kilometer runs in between, you have different stations. So 1 kilometer run, One 1000 meter skier, 1 kilometer run, you know, and you just keep going through the station. So there’s slight push, sled, pull, indoor rowing, lunges, hell bell farmers carries, burpees, door jumps, you know. So this hits your activities and beauty, the beauty of it is, as they say, everyone can do it, where everybody can do it, and you can train, you know, it’s not like a Spartan or tough mudder. Adam Jackson 30:50 Where you have to actually go and you get muddy and dirty and you hurt yourself. We can’t really train for that. Whereas High Rocks, you know what the standards are, you know what you need to do, and most gyms you can do it at, and it’s the staff have been absolutely amazing. I can’t speak highly enough of Matt Buck, which is the Australian head he’s been super supportive of the addition divisions to try and get it through, because now we have an opportunity to go to the world championships as adapt with athletes, which is, it’s insane, but it’s good to have that. Challenges and Motivation Adam Jackson 31:35 You know, that goal of and again, it’s trying to get other people into the sport. But you know, people that go, I can’t do that like I did 12 months ago, to get them into the sport and go, You know what? This is actually fun, and have that again, a goal to train towards. It’s good. Bill Gasiamis 31:57 You’re training for competitions now, when you were fit and well before the stroke? Adam Jackson 32:04 Yep. Bill Gasiamis 32:05 Were you doing that level of training? Were you trying to accomplish those types of goals? Adam Jackson 32:12 I was training, probably not quite as hard as I am now, because I had to show a full time job and then the kids, but like, when I was home, I’ve always I’ve always been fit, I’ve always gone to the gym. I’ve always played, I was playing that ball before him at a high level. But again, life just pops in the way and just takes over. So I’ve always loved sport, and I’ve always loved being competitive, and this is just, you know, helped, I suppose you could say. Bill Gasiamis 32:51 You’re in the adaptive divisions or similar, you would have met a lot of people in similar situations. You because of maybe a stroke or a different condition. What’s it like meeting other people that are going through something similar can relate to you? Adam Jackson 33:10 So I’ll just refer back to my like my Invictus team, for example. You got people in wheelchairs, you got people, you know, with mental health problems and a lot. There’s a lot of stories out there that you look into, there’s cancer people with cancer and terminal illnesses, you just you know, you’re in awe of them as much as they’re on awe of you for their strength and their resilience to to keep pushing through, even though they know that they have a finite amount of time left on this earth, especially for the terminal cancer patients, you know. Adam Jackson 33:57 But they’re still one of the my teammates, Doug Griffiths, he just did the kind of Marathon in Hawaii, like, that’s amazing, you know, to do that, yeah, it’s very inspirational, and you get all that. You get more energy from them being in that group of people. You know, there’s special people and to be included into that group is yes, I’m very grateful for that and for that opportunity. Bill Gasiamis 34:36 Yeah, it sounds like that helps you with the tough days. I imagine there’s a lot of hard days in not only the training aspect of it, but also dealing with what stroke has caused and created. Is it something that you’re managing well, that you handle thing? How are you dealing with all those types of things? Adam Jackson 35:06 Yep, mostly I handle it well. I still have my good days, my bad days, a lot of that. Because, I suppose being a adapted athlete now, like again, you look at the other people and go, you know, am I worthy? I suppose you could say and but then you just go, well, that’s why you got to give it your like yesterday in my race, like I had a carpet burn on my knee, my elbow, like I was wrecked. Adam Jackson 35:44 But you don’t like you just don’t give up because a it teaches, you know your kids, those values of you know you might be hurt, but you’re not broken. Yeah, I think one of the Doug Griffiths mottos is, you know “Beaten but never broken.” So that’s, it’s a good motto to have. Bill Gasiamis 36:15 So part of the thing that inspires you to keep going is the kids to be a good example for the kids. Adam Jackson 36:22 Yeah, and from, you know, to just push through that pain. And that, or not, you know, might not be pain. It might be the emotional barrier holding you back from trying something or to do something and just you, and you’re only here for a short amount of time. And life always throws you curveballs, but you gotta just get through it. Bill Gasiamis 36:54 Is the pain that you experienced now after stroke, different from, say, the pain before stroke, when you were going to the gym, pumping iron, running, doing whatever. I know that kind of pain as well. It’s a, I hate this pain, but at the end, it’s really good pain, you know, like it’s okay going to the gym. Now for me, I’ve actually stopped going to the gym probably the last four months, because every time I was going, I was causing not an injury, but I was causing something to occur where my muscles weren’t recovering. Bill Gasiamis 37:33 I was just aggravating things and making it tighter and tenser, more tone, more painful, more annoying, and the fun of going to the gym like went away, because I was never coming, I was never recovering and going back recovered. What’s it like for you to experience this version of your body, going to the gym, training, and all that kind of stuff, compared to the previous version? Adam Jackson 38:01 It’s a lot harder, obviously. Again, as you said, like your muscles, especially on your affected side, your muscles tighten and the tone just kicks in, and there’s no way of actually stopping that at that time. Like you can stretch, but it doesn’t, you can’t stretch properly. So you know that pain is there all the time. I find acupuncture works wonders to release that tension and that time. Adam Jackson 38:34 And I suppose that again has helped me know, keeping up with my allied health professionals and those appointments to, actually, and FE is the same, you know, dry needling my right arm to, you know, release some of that attention. But again, it’s either don’t do anything, and then all those gains sort of slip away. Because if I don’t move my right arm or use my right arm, it just it’ll be it just wasted away. So I have to go to the gym to give us something like to move it, and to do those sorts of things. And my leg, I suppose it’s the same. Hope I don’t do it, sort of, yes, yeah, I need to do it. Bill Gasiamis 39:28 You need to do it regardless. You gotta push through the pain, even though it’s harder than before. Adam Jackson 39:34 Yeah, definitely, yeah. Bill Gasiamis 39:37 That’s maybe what I want to hear, what I wanted to hear you say, so that, like I know what I’ve gotta do, and maybe other people that are listening understand as well that it’s harder, but it’s probably more important than it’s ever been. Adam Jackson 39:58 Exactly, and I think, with the pain like, obviously, I’m probably an extreme version of spending two or three hours at the gym five or six days a week. You don’t need to do that to get, you know, to keep that I’m doing that for my fitness and for my athletic endeavors, whereas most people, you don’t need to do that. You just need to move that up, or you just don’t need to go to those extremes. Bill Gasiamis 40:35 You just gotta get moving. You gotta get the you gotta get the muscle activated. There’s no way I’m doing three hours of gym a day, mate, no chance. It doesn’t matter how much spare time I have. I was very happy to go in. And this is the good thing about what you just said. It’s true, I was very happy to go in when my body was responding the way that I wanted it to, maybe for 30 minutes, 45 minutes every second day. Yep, and that was it. Because what that meant that I got to see people and meet people who I haven’t seen for two or three days. Bill Gasiamis 41:12 You know, we get to talk a little bit about what you get up to, kind of stuff, a little bit of trash, a little bit of sport update about your team, and then push some weights around, you know, get the blood pumping, get the endorphins running, get all of the neuro transmitters happening and then feel a little bit exhausted, and then go back and recover. And it was part, it was a good part of a routine that created, yes, only good things, yes, and even when I was going and I wasn’t recovering well. Bill Gasiamis 41:48 And I had some problems with my muscles and that it was still it, even then it was still good to go the community aspect of it and all that stuff was still worth it, but at some point it gets to the stage of “Okay, if I’m going to, and this is the other real important point I want to make, if you’re going to be injuring yourself going to the gym, you just need to find a way to go without injuring yourself and without making the deficits impossible.” And then just find a way I decreased my weight so my the guy who set up my sessions. Advice for Stroke Survivors Bill Gasiamis 42:32 My Monday and my Wednesday sessions, what I was going to do. My program initially had me kind of lifting more and more weights and getting heavier and heavier, and I’m like, I don’t need to lift lift heavier weights. I just need to lift weights just so that I can keep the bone strength, so I can keep the muscles growing, the blood flowing, all that kind of stuff, so I can create new neurons. It’s a very different reason why I was going to the gym now, exactly as opposed to when I had previously been to the gym. Bill Gasiamis 43:06 So I still encourage people to go, and even though it might be hard and difficult, just find the just find yourself doing the exercises that are easy for you to do that you can resist some decent amount of weight, yeah, and the ones that are a little harder, just decrease the weight and get somebody to support you or assist you with those particular sets or reps. Yeah, it’s so important, but you’ve taken it to the next level. I mean, this is, why did you just go to the gym? Why didn’t you just go and train and run and not worry about competing? Adam Jackson 43:50 Well, I did for the first four years, pretty much. And I remember, like the people that are worried about going to the gym at the start, I did not want to go to the gym because of my death deficits. You know, you always worry about people looking at you funny or wondering what’s wrong with you, and have those conversations. And a lot of people, I was the same, you know, don’t want to have those conversations with white strangers going I had a stroke. This arm doesn’t work. I’m trying to, you just, you want to be left alone, and I suppose that’s the main reason why. Adam Jackson 44:26 For those four years, I just was doing it for myself and my family to get better. And it was my wife who suggested applying for Invictus. I suppose that’s was the catalyst to push me to compete, to go harder than I have before, to try and see what, see what I can do. See what this body can do, 44 now, trying to represent Australia in a sport at the Paralympics or in the World Cups, or whatever it is, but trying to achieve something that I would never have thought I could achieve. I might not get that, but that’s fine, because now you’ll have that goal, and you just gotta keep trying. Bill Gasiamis 45:17 Just to achieve great things if you don’t get there. So, aim for the stars, no problem. You’ll get somewhere pretty high up, man, it’ll be fantastic. So with your leg, do you use an AFO? Adam Jackson 45:34 No. Bill Gasiamis 45:35 Okay, so no AFO. Now you still look pretty fit, right? You look pretty fit, your arm doesn’t respond or isn’t working at the moment, is that right? Adam Jackson 45:46 No, it works. It’s just my hand. Bill Gasiamis 45:49 It’s just your hand. Adam Jackson 45:50 Like, yeah, totally, from my knee elbow down, it’s sort of weaker, but he’s my elbow up. Bill Gasiamis 46:00 Still got some decent muscle tone there. How do you use your hand? How do you support it to go through the exercise? Exercise regime? Adam Jackson 46:11 I have an active hand. Do you know what that is? Bill Gasiamis 46:16 No. Adam Jackson 46:18 My wife will grab it for you. So it basically helps me hold on to stuff. It’s an absolute, well, it’s a game changer. So that’s looks weird at the moment, but basically it goes over again and then all Bell code, you just drop it on your wrist, and then goes around and around to hold on to a bar or whatever it is. See, you don’t really need your grip strings to go to the gym, usually does it for you. Bill Gasiamis 46:55 Strap, tightens your fingers around the bar, and then, as you pull it down and velcro it. It just holds your hand in the right position and supports it. Adam Jackson 47:04 Yep, it’s good. It’s like I said, it’s been invaluable. Because if I didn’t have that, this wouldn’t be possible, because it just depend on my strength. Then has a lot of stroke survivors, don’t concentrate on that hand, it just releases. It’s stupid. You know, rehab where you gotta hold on to something and walk like you drop it, because you keep concentrating on walking or doing something else, and your hand is open. Bill Gasiamis 47:35 So know all about that, right? So, yeah, I was climbing a scaffold at work, in May. And the reason we had the scaffold there was for safety purposes to make sure that we reached the heights of the particular building we were painting, without anyone falling off a ladder and getting injured. So I’m climbing up the from the ground, I’m climbing up the ladder to get to the first stage of the scaffolding where the platform was, and as I was climbing up, my left hand it just literally let go, and I hadn’t quite put my right hand on the next rung yet, and my left hand let go. Bill Gasiamis 48:19 And I fell backwards, and I smashed my back on a horizontal bar, metal bar of the scaffold and then fell another meter down to the ground and hit the ground with my back, injured my ribs, bruised my back, and all that kind of stuff. Couldn’t sleep properly for about three weeks, I was getting massages once a week, trying to release it and get it going and it’s just exactly what you just said, happened it for no reason. Just let go because I wasn’t paying attention to or focusing or looking up, or, you know, thinking about the next getting on the on the scaffold platform. Bill Gasiamis 49:04 It just let go, and it was scary. And the thing about that is, at the gym, it never happened at the gym. When I was at the gym, it never, yeah, let go. But I always had that weakness, the left side weakness, so if I was doing free weights, I for the first I went to the gym for about 18 months, and the first six months I completely avoided freeway, so just use the machines. And then my chiropractor said “Maybe you should use free weights, decrease the weight, so that you can reactivate the arm and the bicep and the tricep.” Bill Gasiamis 49:41 So, that it’s doing the exercise without assistance, so that you can train it, to rehabilitate it. And it’s like “Yeah, but I’m afraid I’ll drop it.” And he said “Well, then just you do lighter weights and then that’ll be fine.” And it was actually fine. But my left side would save the reps. So if the repetitions were 12 or 15, you know, my right side would get there and it’d be no sweat, and be like “Yeah, okay, we can at that weight.” Bill Gasiamis 50:16 We can do more than 12 or 15, but my left side would be going at 10 and be going, man, you’ve had enough. You know that’s enough. Stop, and the last two would be burning. What do you feel like when you do your exercises? What is your right side feel like? Adam Jackson 50:34 So again, I’ve, from the start, have always trained both sides equal for that exact reason. You don’t want a massive, massive arm and of the tiny little arm. So I’ve always trained anything. It’s not the same. Obviously, I get some pull or some twists, like chest area. It’s pretty good now, like I said, because I’ve been training four years now, like all that pull-down I couldn’t do at the start. Now I can, looks normal. Adam Jackson 51:15 A lot of people who saw me training at the gym, apart from my active end on, like and they wouldn’t know that you know to have a stroke, they’re just because it looks pretty much normal. But again, that’s taken a lot of effort time to get to that point. And again, I train with lower weights on my right side so that they’re both, they use them. The Mental and Physical Benefits of Training Bill Gasiamis 51:46 And for you previously, going to the gym, previously, I know it’s for fitness and to keep in shape and all that kind of stuff, but it was, was it also about like pushing yourself to see how hard you can go. And now is it more just about the training, part of it, literally just keeping yourself fit and healthy? Like has it shifted the purpose, the reason you go to the gym because you’ve gone for a long time? Adam Jackson 52:13 Yeah, I think the purpose hasn’t changed. Because I love the gym, I love the community, but it’s, it’s about doing something for yourself that you love, you know, I can jump on a bike, or I can jump on the indoor row or whatever. I don’t know. It’s just, I find peace in the gym being by myself. I don’t really train with anyone like I’ve got like personal trainer that I train with. But apart from that, at the gym, it’s just me. And again, it’s the alone time to be with your thoughts. But for me, it’s just that not, I wouldn’t say relaxing, because it’s not relaxing, but you de-stress. Adam Jackson 53:05 You get rid of that anxiety that those troubling thoughts that you might have, or whatever it is, but you just put that to side, to the side, and all you’re thinking about is the training that you’re doing. So me to have that focus. Yes, my goal has changed, but the reason I go to the gym hasn’t. Bill Gasiamis 53:30 So it sounds like you get mental clarity or some kind of mental support there. By that, I mean like you get out of your head, because you have to be. Adam Jackson 53:42 Yep, exactly, yeah. Bill Gasiamis 53:45 Tell me, Adam, what’s the hardest thing about stroke for you, though. Adam Jackson 53:54 Probably not being who I was before. But then I suppose that’s a good thing. I again, like I said, I’ve always been a positive person. So, like my stroke happened on my right side of the affected, but I’m a left handed, so, I always try and find the positives in the negative. So, yeah, it’s hard. Bill Gasiamis 54:25 Yeah, what has stroke taught you? Adam Jackson 54:31 That you’re stronger than you think you are, that you know there’s other people out there that have the worst than you. I suppose it’s like for me, like I said, you know you’re stronger than you think you are, and you know you will get through this. I think the hardest thing for me at the hospital was, and because a lot of older people have strokes. Well, it affects every age. Adam Jackson 55:09 But in the rehab or there’s a lot of older people when they’re going through the same rehab I was going through, and for them, it’s, you know, it’s nearly impossible. And that’s for me, it was heartbreaking to see because again, they’re really lovely people. You talk to them on a daily basis, and they’re struggling a lot harder than you are. But again, it comes back to everyone’s going through a different journey. Adam Jackson 55:41 And the only thing that you can help is by supporting them, whether that’s through just talking to them or sitting there listening to what they say, and they’re just being there for people like that. Because I hate this is going to sound ridiculous, but I hate that you’ve got it, let’s go, let’s go, like, I hate the support or cheer squad sort of attitude, but again, it has its purpose, especially in like, competitive environment. But again, I’m just sort of focused on what I’m doing to sort of just drown that out, but it’s good to have that Family Support backing you up all the time. Bill Gasiamis 56:42 The cheer squad type of stuff. Like, what bugs you about that? Why is that an issue? Adam Jackson 56:51 I think it’s just when you know, like when it’s just me and say, my wife or something, she’s, I mean, she’s my absolute number one supporter, but I actually don’t know what it is. I’d love to ask her what she thinks about it, but I just, I don’t know, because I think I’ve done it for so long on my own. I had basically on my own cheer squad. Bill Gasiamis 57:20 So maybe you don’t like being given praise or something. Adam Jackson 57:27 Yeah, something like that, yeah. I as you could probably tell, like, I don’t need that praise now, I’d rather like inspire someone else with my journey. Now it’s not about me, it’s about inspiring my kids to do better, or, you know, other people that don’t think that they can achieve these things you might achieve, like I might not achieve the Paralympics, but I’m going to give it a red hot go, and it’s about the journey. It’s about just seeing where you can go and pushing yourself to where you took further than you think you can go. Bill Gasiamis 58:10 Fair enough. There’s a ton of people listening that are stroke survivors, maybe considered going to the gym, maybe they have been afraid of going to the gym, who knows what. But what do you want to say to say to people who are listening, who are not quite where you’re at with the whole exercise fitness, the importance of that like, what do you want to just let people know? Adam Jackson 58:37 Well, I started walking my girls to school. That’s where I started this journey after I left hospital was, you know, because we lived okay, like a one kilometer from school. So walking to the school every day, picking them up every day, that’s how I started this. And just like you said at the start, like just getting out and about, getting that, the fresh air, the sunlight, the rain, whatever it is. Again, it’s a story, and it’s a journey, that’s where I started, and then I just increased my strength, my stamina, what I could do wasn’t easy. Adam Jackson 59:23 Like I said at the start, I couldn’t do a like, a lap, like a lot of the exercises at the gym, because my right side was so weak, and I had to build my shoulder back up because it wasted away while I was in hospital. It’s taken me a long time to get back to this where I am now. And that sounds like a long time, but you just take it one step at a time, like I said, I started off walking, and then I started trying to run, going back to the gym, which I didn’t really want to do, but if you go into the gym, they should have that community there. Adam Jackson 1:00:03 And again, like I know at home, there’s a lot of adaptive athletes out there, or adaptive gyms, where they’re super supportive and they know how to help stroke survivors, if you’ve got a deficit. They know how to help that, I know there’s a lot of Prospect gyms that do the same, just to give you that community of like people that are like you. It may not be a stroke survivor, there might be, paraplegics or quadriplegics, but whatever it is, there’s these communities out there. Adam Jackson 1:00:40 You just got to find one that suits you and welcomes you and where you’re happy to train where you’re happy to just push, not push yourself, but just to get out there and get out of your own or converse with people, to have that community to sort of bring you out of your shell and and to know that you’re not this broken person. You’re actually a beautiful person that you know has to live like that’s what it’s about. Your life is there for living, not for hiding away in some dark corner and whatever that is for you, not, obviously, not everyone wants to be an elite athlete. Adam Jackson 1:01:37 It might be to do a 5k run with their kids, or whatever it is, but, you know, you’ve just got to have that goal. Well, doesn’t matter how long it takes you to get to that goal as well. Like, it might be walk 500 meters and then walk a K or whatever it is, lift a 10 kilo dumbbell, whatever it is, you know, you have those goals and work up to work, doesn’t matter how long it takes you to get there, you can, it’s good. Conclusion and Final Thoughts Bill Gasiamis 1:02:12 Yeah. I like that, start small, walking the kids around, taking them to school, that’s it, tore than enough, perfect, and then from there, it seems like from there, you know, your level of difficulty increased just because your fitness increased, just because your ability increased, and that’s the way forward is like just increasing the level of difficulty really small incremental steps so that. Adam Jackson 1:02:41 Yeah, exactly. Bill Gasiamis 1:02:42 You can get there easily and not injure yourself and not fail and have just maybe you’ll have some minor setbacks, but no massive blowouts or no massive failures. Adam Jackson 1:02:53 Exactly, yeah. Bill Gasiamis 1:02:55 Mate, I really appreciate you reaching out and connecting, and I’m glad that we met through Effie. She’s an amazing person, and I love the attitude that she applies to rehabilitation and stroke recovery. I think thinking a little next level is great. I’m going to have links to her organization in the show notes, just in case somebody wants to go there and check it out. She’s in Australia, so most of the listeners and people watching are not going to be able to benefit from Effie, but the organization that she helped, co found, is really amazing. Bill Gasiamis 1:03:40 I wish you well man, thank you so much for sharing your story. Congratulations on your journey so far, and best of luck with all of your sports, events and yeah, man, hopefully you get some medals. Adam Jackson 1:04:03 Cool. Thank you very much. Bill Gasiamis 1:04:05 That brings us to the end of this incredible episode with Adam Jackson. His journey from surviving two strokes, one while serving in Afghanistan and the other 10 years later to becoming an adaptive sports competitor is a powerful reminder that recovery is a continuous process, and it’s never too late to push your limits. Before we wrap up, I want to give a heartfelt thank you to my Patreon supporters, your contributions help keep this podcast running, ensuring that stroke survivors worldwide have access to these resources. Bill Gasiamis 1:04:39 If you’d like to support the podcast and help make it accessible to others. You can find out more at patreon.com/recoveryafterstroke . And remember, even if you’re not in a position to contribute financially, simply listening to the ads without skipping them is a great way to help every little bit, makes a difference and keeps this podcast going strong. Your engagement on YouTube, Spotify and iTunes is also hugely appreciated. Bill Gasiamis 1:05:08 If today’s episode inspired you, please consider leaving a five-star rating on Spotify or iTunes or giving it a like and a comment on YouTube. Your support helps others find this podcast and join the growing community. Make sure to keep up with Adam’s progress journey and follow his progress in adaptive sports, and remember to explore the resources available at recoveryafterstroke.com , for more insights and support. Thank you again for tuning in, and I’ll see you in the next episode. Intro 1:05:42 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis. Intro 1:06:12 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice, and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Intro 1:06:37 Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department medical information changes constantly. Intro 1:07:03 While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third-party links from our website are followed at your own risk, and we are not responsible for any information you find there. The post Surviving Two Strokes: Adam Jackson’s Inspiring Adaptive Sports Journey appeared first on Recovery After Stroke .…

Recovery After Stroke

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One Month After Ischemic Stroke: A Survivor’s Guide to Recovery and Resilience 1:09:24

26 дней назад1:09:24

1:09:24

One month after ischemic stroke: Tony’s journey reveals real recovery challenges, inspiring rehab tips, and key support for true healing progress! Facebook Support The Recovery After Stroke Podcast On Patreon Highlights: 00:00 Introduction and Acknowledgements 01:13 Tony Barfield’s Stroke Experience 03:42 Hospitalization and Early Recovery 05:11 Post-Stroke Health and Lifestyle Changes 08:01 Daily Life and Physical Challenges 19:38 Family Support and Coping 29:48 Breaking Habits: Overcoming a Soda Addiction 36:57 Finding Healing Through Conversation 48:04 Spreading Awareness & The Role of Faith in Recovery 52:06 Future Outlook and Goals 1:06:29 Closing Remarks and Gratitude Transcript: Introduction and Acknowledgements Bill Gasiamis 0:00 Hello everyone, before we dive into today’s wonderful conversation, I wanted to take a moment to thank you for being a part of this amazing community. Whether you’re sharing the podcast, leaving reviews or simply tuning in each week, Your support makes all the difference. Together, we’re creating a space where stroke survivors and caregivers can feel seen, heard and inspired. If you’ve received tremendous value from these episodes and would like to support the show, please consider visiting patreon.com/recoveryafterstroke. Bill Gasiamis 0:35 Your generosity helps cover the ongoing costs of recording, hosting and editing and all other production expenses, ensuring we can keep sharing these important conversations. A huge thank you goes to all my supporters. Your support means the world to me and helps ensure that I can continue producing episodes that empower stroke survivors everywhere. I also wanted to address something important, if you’re not in a position to support the podcast financially, simply listening on Spotify or watching the ads on YouTube without skipping them is a huge help. Tony Barfield’s One Month After Ischemic Stroke Experience Bill Gasiamis 1:13 These ads are essential in offsetting some of the production costs and keep these resources alive for stroke survivors and their families and remembering The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s a beacon for hope and practical guidance for many available on Amazon and at recoveryafterstroke.com/book . Today, I’m thrilled to welcome my guest, Tony Barfield, who experienced an ischemic stroke just a month ago. Tony’s journey through early recovery is both inspiring and insightful. Bill Gasiamis 1:51 Let’s jump in and listen to his powerful story. Tony Barfield, welcome to the podcast. Tony Barfield 1:58 Thank you, thank you. Bill Gasiamis 2:00 Tell me a little bit about what happened to you. Tony Barfield 2:03 Well, mine was recent, you know, January 9. I came home from work. It really wasn’t any symptoms, I really thought I had a stomach ache. When I got home, my stomach was kind of bothering me, and I told my wife to get me something, you know, from I thought my stomach was upset because that’s why I feeling kind of nauseated, because I ate something that maybe I shouldn’t ate earlier in the day. So that’s why I thought it came was kind of spicy. Tony Barfield 2:29 So that’s why I thought it was it came from, so it’s about, I guess, about seven o’clock when I know that I was laying down on the couch, and I noticed, you know, with my hands on my on my chest, but I knows on my left hand, it kind of slid off my stomach, and I couldn’t control it, you know. So, like I tried to stop it from sliding, and then it just went limp on me. So I kind of propped myself over that nose or left arm. Couldn’t move it at all, lift it up or anything. So I kind of called for my wife. She came in and she seen and I asked her, I said ‘Hey, am I having a stroke? Tony Barfield 3:05 Because my speech was real slurred, and she looked at my face, as you could see, the left side was kind of droopy. So she called 911, and they came within, man, maybe 20 minutes. So they rushed me to the hospital. You know, me not really knowing what the stroke was all about. I kind of heard them and as they got me on the gurney and rolled me through the hospital, they kept saying ‘Stroke four, stroke four. Which I didn’t know what that was, but when I finally later that, they said ‘You know, you have four hours for the Minister of what they call a clot buster. Hospitalization and Early Recovery Bill Gasiamis 3:42 TPA, yeah. Tony Barfield 3:44 So it was within that four-hour time frame. So, you know, they administer that, and then I found a little, you know, I was able to lift my hand at some point. So I stood, I stayed in the hospital about three days because I still had weakness in my left arm where I could mov, it would come and go. It would just come and go, come and go, and then they had to pretty much learn how to walk again. For somebody, my leg was kind of weak as well. They wouldn’t let me go until I was able to at least walk and keep my balance. Bill Gasiamis 4:18 How long did you spend in the hospital? Tony Barfield 4:20 Three days. Bill Gasiamis 4:21 Three days is that’s the whole lot, and then you went to rehab. Tony Barfield 4:25 Then I went to rehab from that right which I’m still in rehab right now. Bill Gasiamis 4:29 I finished physical therapy. How long were you in inpatient rehab? Tony Barfield 4:37 A month, the whole month of February, the whole month of January after I got out the hospital. So right now I’m doing speech therapy and occupational therapy right now for my left hand and for my left face, is still kind of weak, and my speech is still kind of noticing like I’m talking for more on my right side of my face, more so in the middle of my face. So this is fresh. It was real, it’s brand new. Yes, brand new. So I’m still going through the therapy and a lot that I have learned, so a lot of things that I had to change from for one thing. One Month After Ischemic Stroke Health and Lifestyle Changes Tony Barfield 5:11 I don’t know if anybody else has experienced this, but, like my taste buds, like certain foods and smells, if I smell it and it smells funny, I don’t want the things that I used to like to eat, like McDonald’s. So that’s a total turn-off now. So I don’t even want to if I smell it and it smells bad, for some reason, I don’t know why exactly, I don’t even want to eat it. So I just thankful that I guess that’s more so possible. So now I’m eating more, more things that vegetables, lot more fruits now, saying, including the medication. Bill Gasiamis 5:48 So, how would you say your health was up until now? So you’re 59 years old, and how’s things been up until now? Tony Barfield 5:57 Health wise? Well, I mean, far as my diet is improved. I lost 10 pounds. You know, when I went to before the stroke, I was like, 193 and my pressure was always up. But I wasn’t monitoring it. I wasn’t paying attention to it, my blood pressure was high and my cholesterol was high as well. Tony Barfield 6:19 So I wasn’t really paying attention to that. So now, my pressure right now is is normal, and I lost 10 pounds, which the doctor said, that’s pretty good, I’m saying, so imma kind of continue on that trend to kind of maybe lose another five pounds, I guess. I don’t know, because the foods I used to eat, I don’t like them no more. Bill Gasiamis 6:36 That was one month ago. So you lost 10 pounds in a month, and he’s currently February, near the end of February, what date are we, whether 19th or 20th of February, and you had your strike in January. Tony Barfield 6:52 January 9, correct, right. Cuz I was because the fools was really turning me off. The things I used to like, it was really turning me off, so I kind of had cut back. I eat more salads and smoothies. Bill Gasiamis 7:05 Now, any other medical issues up until now? Did you have any other conditions that you had to deal with or manage? Tony Barfield 7:13 No, not up until now? No, like I said, prior to the stroke, my blood pressure was high, and I knew that, but I wasn’t taking anything. No medication, I was given medication, I just didn’t take it. Bill Gasiamis 7:27 Okay, do they think that the stroke was caused by the high blood pressure? What are they saying? Tony Barfield 7:33 Where cholesterol, cholesterol is high too. Bill Gasiamis 7:37 Do they know, was there a blockage in one of your arteries, or was there something new. Tony Barfield 7:43 Blockage? Yes, that they seen when they did the scan, they did the brain scan. Bill Gasiamis 7:50 And then are you expecting any further treatment beyond medication to deal with that? Or they’re not doing any further up. Daily Life and Physical Challenges Tony Barfield 8:00 Well, other than the therapy, what I’m going through and I guess over time, if I continue, you know, saying doing the right things for my body and not eating all the crap that I used to eat, he thinking it’s getting better. So this is more so time now. Prayerfully, I’m expecting to go back to work next month, but I still got the weakness in my left arm, so they say that’s the longest, the arm normally takes a little longer to kind of recover. Bill Gasiamis 8:32 And how you feeling like with your sleep and fatigue? Are you getting tired during the day? Do you need to rest more often. Tony Barfield 8:40 Rest more often. I do get tired, you know, saying, and I just the day was the first time I drove, actually. So that was pretty good, but it was a little scary, because it felt like the first time I ever drove, driven before. That had anything do the stroke, but yeah, did feel a little weird. So I just took my time, and the doctor said it was okay to kind of gradually start driving, little bit. Bill Gasiamis 9:03 What kind of work do you do? Tony Barfield 9:04 I work for a private school here in Georgia, Notre Dame Academy. I work for private school, and I’m a Facility Manager. So I do a Friday that I do a lot of walking, you know, a lot of handyman stuff, like, you know, repairs, you have a lot of physical stuff. So I’m gonna see if I could gradually get back into that. If my body allows me to without any difficulties. I still want to kind of be safe at the same time. Bill Gasiamis 9:31 Ladders, etc. Tony Barfield 9:32 Yeah, ladder, exactly, exactly. Bill Gasiamis 9:35 Well, I have a property maintenance business. I don’t know how much you know about me, but we do painting and repairs and all that kind of stuff. And since the stroke, the main thing with me is weakness on my left side, and my huge issue is Ladder Safety and right I’m very conscious of safety, and we make sure that we all always do the right things and people have the right tools to do their job, etc. Bill Gasiamis 9:59 Because I don’t want anyone getting injured at work. So this one particular job, literally seven or eight months ago. We had a scaffold on site to make it safe so that we can actually access the high part of this particular building without risk. Bill Gasiamis 10:17 Let’s take a quick pause here to reflect on Tony’s journey so far, his experience one month after ischemic stroke, reminds us that recovery is both a physical and emotional process filled with both setbacks and triumphs. Stories like Tony’s are why I started this podcast to connect, inspire and offer hope to stroke survivors and their families. Bill Gasiamis 10:39 If you’re finding value in our conversation, I’d greatly appreciate your support on Patreon. Your contributions help cover essential costs like recording, hosting and editing so we can continue bringing these stories to life. Even the smallest amounts go a long way. Now, Let’s get back to Tony’s story and learn more about his journey towards healing. Bill Gasiamis 11:01 But I was climbing up the scaffold, the first ladder to go to the first deck of the scaffold, and my left hand just let go of the of the ladder, and wow, I fell backwards onto a metal bar and then onto a timber deck below, and I injured my back, not dramatically, but enough to make it sore for about two weeks. And that all of that happened because my left hand just decided it wasn’t going to hold on and let go, and it does that sometimes I drop things. Bill Gasiamis 11:40 Sometimes, but that particular day was at the end of the day, and I was going up to do just one last little touch up, and I didn’t make it, I fell down, I spilled the paint everywhere. It was a big disaster, but it could have been worse, because I could have got injured far more than I did. Tony Barfield 12:02 So you still experiencing weakness in your left hand? Bill Gasiamis 12:04 You wouldn’t be able to tell if you saw me, it feels really It looks normal. It kind of behaves more normal, but it feels numb, and it has tingling and all that kind of stuff. When I’m tired, the tingling and all those sensations are worse, and then it plays up a little more when I’m tired. So, you know, being the end of the day, it kind of like, just let go. I don’t know, can’t explain it. Bill Gasiamis 12:32 And thankfully, I was only on the third rung of the ladder, so I had done only three rungs and I wasn’t any higher than that. So it was scary, though, and it’s a real big concern of mine, like, it’s on my mind all the time, and I minimize the amount of time I spend climbing and on ladders and all that type of thing. Tony Barfield 12:56 Yeah, that’s what I’m kind of expecting. But I’m just hoping I can kind of maybe heal enough to be able to do that. But I’m anticipating to look forward to that, but I just got to see how it is. Because, you know, it’s kind of nerve wrecking, even like I said when I was driving, it’s kind of nerve wracking a little bit, you know, saying having a look to my left and the cars coming by and trying to anticipate what’s going on and to be safe at the same time. So it’s a little nerve wracking. But, I guess that’d that go, you know, over time over. Bill Gasiamis 13:31 It settles, you adjust and you get used to it. Did you have any vision problems or anything like that? Tony Barfield 13:36 No vision problems at all. No, not at all. Just the left arm and the left my face, that’s the only thing. Bill Gasiamis 13:45 The left arm is able to grab the steering wheel of the car quite well or not. Tony Barfield 13:50 No, I do more so driving with my right hand, the left hand, it’s just rest on the steering wheel. But far as control it nice, I don’t trust it to kind of take control of the steel we’re not on trusted because it’s still weak. Bill Gasiamis 14:05 Are you left handed or right handed? Tony Barfield 14:08 Right handed. Bill Gasiamis 14:09 Okay, that’s all right. Tony Barfield 14:11 So good thing, and I do the same thing, like you do our whole thing. I don’t grow so many dishes at home with glasses trying to hold it from my left hand, and it slip out my hand. I think I got it just lifting, I’m here, so you gotta do the same thing. Well, I have done the same thing, yes. Bill Gasiamis 14:30 How’s the family treating it? How are they managing to deal with the fact that you’ve had a stroke, you’re you said your wife was the person who worked out that you were unwell, arranged for 911 to be called the ambulance, etc. How are they managing the whole situation? Tony Barfield 14:48 Well, she’s been my number one support system, making sure that, I get no take my medication, take me to my appointments. And she’d been the number one supporter. So one for her, I really wouldn’t know what I would do as far as making sure I’m doing the right thing and eating the right stuff. She don’t, she asked me what I want to eat and stuff like that. So I kind of tell her, you know, make sure bring back a salad or something like that or a smoothie or something like that. Tony Barfield 15:17 So she’s kind of on, been on point with that. And the kids, they’ve been great too. They helped me, I had difficulty in the first climbing up because I got two story house, so it’s been kind of difficult to go up the stairs. So they kind of make sure that if somebody’s behind me while I’m walking up the stairs, and that, so I won’t fall. Bill Gasiamis 15:36 To go into your bedroom, is that where your bedroom is? Tony Barfield 15:39 Right, it’s upstairs, correct. That’s been a little bit, it’s gotten better. Going up is a lot easier than coming down for me. You don’t cause the gravity pulling, make sure, I’m kind of safe that way. Bill Gasiamis 15:56 So your leg, is it also a little bit untrustworthy at the moment. Do you have to give it time to get a little better? Tony Barfield 16:07 Yes, and I got to really think about, like, lifting it and even taking steps. I got to think, really think about it, especially kind of, you know, like, say, doing the stairs and but walking is pretty good. Getting in and out of the car is a little tough. That’s tough with my legs, but it’s not as bad as my arm. Bill Gasiamis 16:25 Yeah, coming down the stairs would be, does your knee hold on? Does it buckle little so I had challenges with my knee just collapsing. And then a little bit weird, doing that down the stairs is not a good thing at all. So it really was holding on, etc. So your nails also collapses. Tony Barfield 16:50 Yeah, collapses, right then, and I don’t know, for some reason right there in the hip joint seemed like a little funny too. So I don’t know what’s that all about, but it’s right there in the hip joint. In my left leg is really bending to get up, you know, bend down and get up. Here’s a little difficult as well. Bill Gasiamis 17:11 Are your physical therapists aware of those little challenges that you have with your knee and your hip? Tony Barfield 17:15 Yes, I had a cane at first. My wife bought me a cane at first, but the physical therapy said it the cane is like slowing you down that might cause more problems, because you depending on the cane. So they made me get rid of it, more dependent on the cane. Bill Gasiamis 17:35 So, you it’s not that dangerous for you to give up the cane. So it felt like it was probably a good move. Tony Barfield 17:44 Right, more good move was versus a hindrance. To me, they thought about trip over the cane or something like that. So they said ‘No, just get ready for causing winning problem. Bill Gasiamis 17:56 You know, so and if you’re holding the cane or you’re holding it with your affected hand? Tony Barfield 18:01 Normal right hand. Bill Gasiamis 18:04 Okay, so you’re holding it with your right hand, which is not affected, and you’re using that to overcompensate on your right hand so that you’re not putting a lot of pressure on your left side of your body, but then that’s decreasing the movement and the rehabilitation and its ability to do the work and recover. Tony Barfield 18:30 Right exactly, exactly. Bill Gasiamis 18:35 For other people watching and listening, I would say that’s a great thing to work towards if you have a cane, or if you have one of those four point canes, like those, right? Whatever they’re called, I think it’s great to work towards not needing that. If you can get rehabilitated and gain the strength back in your legs and in your hips and in your knee, it’s a fantastic thing. Bill Gasiamis 19:00 Don’t just give it up for no reason. But it sounds like you guys kind of weren’t prescribed the cane. The cane was something that you guys just bought thinking that it was going to be helpful, and your physical therapist kind of thought maybe it’s going to be getting in the way. Tony Barfield 19:18 Right, correct. My wife just bought it because she seen how I was kind of unstable, a little bit. She thought that would help me kind of much to stability. But I took it to physical therapy, and they kind of watched me walk with it and without it like no it might do more damage, far as hurting myself with the cane. Family Support and Coping After Ischemic Stroke Tony Barfield 19:38 Because I guess they thought I was maybe strong enough to do without it, you know, because I put a physical guy. So I gotta force myself to do stuff that, that my body don’t want to do. So, yeah, seeing that it wasn’t right to have a guy that needed so I haven’t used it since then. Bill Gasiamis 19:57 So, it’s really lovely to have you on the podcast. And I’ve just recently started asking people this question, why? Why are you on the podcast? You’ve had a stroke a month ago. You’re in the middle of rehabilitation. What made you feel the need to reach out and share your story, which I truly appreciate, by the way. Tony Barfield 20:20 Well, I think, when I first seen I don’t know, I was just researching strokes on internet, youtube, and then I just happened to run across yours. I was like ‘Wow, very informative. So I said ‘Well, for me, people my age, I’ll be 60 next month, I think there’s an awareness that people need to know about these things, especially the health risk with the strokes, and, you know, as far as dieting, know what to eat, and exercising, and your blood pressure levels and stuff like cholesterol levels, so I think it’s just more of awareness. Tony Barfield 20:52 I want to kind of get the word just some something similar to what you’re doing, get the word spread out about it. Because, I think because, you know, prior to this, and you and my dad, my dad had a stroke, but I didn’t really pay no attention. I didn’t really like educate myself with it, and know how important it was. I severe it could have been, and luckily, he survived, survived into upper point of death. Tony Barfield 21:14 But I didn’t really never researched it. So when it hit me, I was like ‘Wow, you know, I didn’t. Never thought I would have a stroke. But now it make other people, to make other people wherever. I think it’s important, I think it’s something that I need to do as well. You know, saying to make people aware of the possibility of strokes. Bill Gasiamis 21:31 How old was your dad when he had a stroke? Tony Barfield 21:34 My dad was in his 80s when he had the first one that he was with us, but he was in a in the hospital when he had it, and he had, like, multiple strokes, before he passed away, but I seen what he had, kind of broke him down, and I seen what it did to him, as far as him not being able to do certain things after the stroke, but I still with me. I never took it seriously to kind of get in depth and know what a stroke really was. Because I never, you know, stroke, see, when I first had mine, I got, I was so scared. Tony Barfield 22:11 Because I thought that mean brain surgery, you know, I was so afraid of that. I said ‘I don’t want, nobody, know, cutting on my head, you know, cutting going to my brain. That’s what I was thinking, the first thing I think ‘I said, I’m brain surgery. I thought it was, but not knowing that there’s different types of strokes and you can even have stroke in your sleep. I didn’t even know that. So I had to, kind of learn these certain see certain things. I think everybody needs to know this. Bill Gasiamis 22:42 So if your dad was 80, how old were you when your dad had his stroke? Tony Barfield 22:46 I might have been on 50, I’m 59 I might have been 57. Bill Gasiamis 22:53 so it was a few years ago. Tony Barfield 22:55 Just a few years ago. Yes, he just passed two years ago. He passed away two years ago, and he and he suffered multiple ones. Bill Gasiamis 23:07 And he was living with you guys before then. Tony Barfield 23:10 He was living with us, yeah, he was living with kind of his caretakers at the time, where my wife was, she was doing more caretaker than I was. Bill Gasiamis 23:18 Yeah, wow. So that’s interesting, that he had a stroke, even then, you’re still not familiar 100% aware of what a stroke is, even though you’re caring for him and he’s around you guys all the time, and now you’re in the similar situation, and it’s a little more, you have more a deeper understanding on what your dad went through as well. Tony Barfield 23:45 Absolutely. So I’m just, I’m just thankful, I know several people that had strokes where they didn’t live, but still, even with that, I didn’t even know, really what it was, how severe it was or could be. So I’m kind of, I’m really thankful that even when I go to rehab, I see so many patients there that has strokes, and they’re a lot worse condition than I am. Yeah, you know, saying I was going to shape it. So I’m kind of thankful that, me not having to complain do too much complaining about what I’m going through. Tony Barfield 24:14 Because people have been far greater worse shape than I am that has strokes, so that was a little bit more severe. So I’m really thankful that mine is I’m going through what I’m going through, and that way I can kind of spread the word and tell people what it’s all about, especially from a health standpoint, I think that’s important as well. Bill Gasiamis 24:40 Your stroke, it’s the first sort of major health issue that you’ve experienced, knowing that your dad passed away soon after. Did you think about the possibility that you might lose this battle, or you might not be here? Or did you have any of those thoughts that come into your mind. Tony Barfield 25:02 Well, when it first happened, I did, like I said ‘I thought it was automatically mean brain surgery. So, yeah, it was fearful then. But then when time kind of progressed, I learned, I kind of did some research on stroke, different types of strokes, and since my ischemic stroke, I knew that was a blood clot, so which on you don’t kind of damage your brain a little bit. I know it’s gonna take some time, but yeah, in the beginning, when it happened, I did, I was very fearful. Bill Gasiamis 25:34 How do you deal with it now? How do you deal with knowing that you are vulnerable? You did have a stroke, and, you know, things go wrong sometimes in our health, and we get injured by life. How do you deal with that now? How do you think about it? Tony Barfield 25:54 Well, my thing is, now, so now, so it’s almost it was like a wake up call for me, because I was eating a lot of bad foods. One taking my medication. I’m saying I used to drink though I was just slammed down those Red Bulls two or three a day. So I that’s cold turkey. So now it’s since, it’s up to me now, now I know far as what I need to put in my body exercise, take my medication and just move on from there. Because I’ve heard, I read that, you have a stroke, you can have another one. Tony Barfield 26:27 My doctor say the same thing, say ‘Well, you know, you can’t, you can’t have another stroke if you don’t do these things, put these things in places. So I got, I’m kind of cautious now. So I said ‘I’m kind of thankful, I really, it’s a blessing in disguise for me to not know what not to do moving forward. So it’s a kind of blessing in disguise. Bill Gasiamis 26:45 For did you know how long? How long were you drinking Red Bulls for? Tony Barfield 26:52 Man, about least five years. Bill Gasiamis 26:57 Did you know that maybe you shouldn’t be drinking them, or that you should avoid them, or that they’re not good for you. Did you think about that? Did you have any idea about that type of thing? Tony Barfield 27:09 Yes and no. But I think the sugar had me so addicted, that’s what I’m thinking. Sugar happens and they taste good to me. Sugar, caffeine, and I’m thinking it was giving me energy. Wasn’t really, I just kind of got addicted to it. So I was slammed one in the morning, one for lunch, and one in the afternoon, thinking, I’m getting this energy, and they just really, they taste good, but now, I always have a taste for it. Now, which I’m thankful to that. Bill Gasiamis 27:40 They took sodas and rebranded them and called them energy drinks, you know. And that’s exactly such a shit move, like, it’s such a terrible move that they did that, and now all you have to do is think about ‘Oh, I’m, yeah, I’m lacking energy, well the only place to get energy is to go get it in a can of Red Bull. Let’s crack one of those open and drink one of those. And if the energy hasn’t really come back yet, well, just have another one that’s like, right. It’s terrible. Bill Gasiamis 28:08 I mean, it’s an unbelievable thing that I think has happened is they’ve found a way to step away from sodas, because this started to be a lot of talk and a lot of research in the 90s about sodas and how they’re not good for you because they have too much sugar, all that kind of stuff. And then we heard about diet sodas and all that type of thing to try and make sodas seem better and so on. And then this was the master move of rebranding sodas as something else so that they can be consumed and people don’t associate them to the same troubles that that soda has. Bill Gasiamis 28:49 But three Red Bulls a day for five years, let’s say you did that on average, there were three a day for five years. That’s a lot of caffeine. There’s a lot of potential for heart problems, for brain problems, for arrhythmias in your heart, and it’s just not water, it’s not water, it’s not hydrating you, it’s not offering you anything really, that is nutritional at all. Tony Barfield 29:13 Absolutely, it’s just a mind thing. I thought it was getting something out of it, but I really wasn’t. Yeah, you know, because of my thing, and I think that’s the sugar that does that, the caffeine that does that, makes people want, want to buy more, but,I don’t even have a taste even it even so with tea, like sweet tea, I try more, like after stroke, and It just has a horrible taste of me now, so I don’t even want it now versus just without sugar. Breaking Habits: Overcoming a Soda Addiction After Ischemic Stroke Bill Gasiamis 29:48 Before my stroke, 13 years ago, I went to somebody’s house, my brother’s house, or a family friend, or anybody who knew me, if I went to the house and they knew I was coming, they would have coke in the fridge because I drank coke. And not only that, they knew I had trained everybody that when I’m drinking Coke, I have to drink it in a glass that is full of ice. So when I pour it in there, it’s the entire glass is ice, and then there’s just a little bit of coke so that I can then pour, pour it in again, and it’s ice cold. Bill Gasiamis 30:25 You know, they knew I had trained people to that extent where they knew that when I went to your house, you served me coke in a glass full of ice, and not Pepsi, not Diet Coke, none of that stuff. I wouldn’t drink it, and that was me. I was addicted to coke. I used to drink maybe two or three cans a day as well, not all the time, but especially at work. At work, we drank a lot, I drank a lot of it, and that was the same thing. I was just doing it because I wasn’t even thinking about it. Bill Gasiamis 30:55 I was 37 and I had done it for as long as I was, you know, from a teenager when I had to my own pocket money, and I could go buy my own sodas and all that kind of stuff, and mom and dad weren’t in control. That’s, you know, I’ve been doing it for 20 years before I realized that it’s probably not the right thing to do. Tony Barfield 31:16 Well, you don’t no more, right? Bill Gasiamis 31:18 No more, after my stroke, I didn’t drink alcohol for five years solid, and I didn’t drink a soda for more than that, and then maybe recently, maybe all up in the last 13 years, maybe I’ve had one can of soda combined, and that’s just because there was nothing else. Or, I don’t know why, you know, just thought I’d have a try of it, and it was terrible, and I didn’t enjoy it. Yeah, so, and it doesn’t make me feel well when I have when I drink something that’s very sweet. It impacts my my left side real bad. It makes it more numb, more fatigued, more sensitive, and it’s not worth it,. Tony Barfield 32:06 No, absolutely, yeah, it’s not. Bill Gasiamis 32:08 So, yeah, that’s the thing about, you know, just doing things having habits, and not being mindful of what you’re doing and what you’re putting in your body and what impact it’s having, that’s the crazy thing. Alcohol should be off the table as well from now on. Tony Barfield 32:26 But I never drunk, so that was, I guess it was a plus, but I don’t rank at all. Bill Gasiamis 32:34 That was a huge plus. So yes, and did you ever smoke? Tony Barfield 32:39 Don’t, never smoke. Bill Gasiamis 32:40 Yeah, so then, what’s the future look like for you? I very rarely get to interview people who are so early on in their stroke journey. So what are you feeling? What are you thinking about? What the future holds? How are you going to move forward? Tony Barfield 32:59 Well, I’m hoping, if there’s such things as 100% recovery, I’m hoping that takes place and get back to my old self, but just be more conscious, like I said, of my blood pressure, my cholesterol levels, you know, exercising more, doing things like that, moving forward so and like I said, just educating people, spreading the word with individuals, for to know what not to do, health wise. Tony Barfield 33:32 So I know it’d probably be a journey. I don’t know how long have you been since you had your stroke? But I couldn’t even tell when I first seen your video. I couldn’t even tell know that you had a stroke. I couldn’t even tell it off. Bill Gasiamis 33:45 That’s one of the difficulties with my situation, is that when people see me, they don’t know that I’ve had a stroke, they don’t know that I’ve had brain surgery, they don’t know that I had to learn how to walk again. They don’t know what my left side feels like. Actually, I never want them to know, but it’s a little bit invisible. My deficits are all invisible, so I have to manage some situations sometimes, and I have to just, kindly, just let people know that I’m not up for something, or I’m not capable of something, or this is not for me. Bill Gasiamis 34:20 And oftentimes it’s just sort of saying ‘Yeah, I’m not interested in that. And if they persist with trying to convince me to do something that I’m not up to doing, then I’ll have to, you know how to stroke. And I had brain surgery, so I’m a little bit sensitive to certain things, and I can’t do it. So I tried to avoid the conversation, if I can, but if necessary, then I just inform people of the situation and why I might look okay, but I’m different than you. I have some different issues that you can’t see. So that usually works, and that usually gets people sort of settling down, right? Bill Gasiamis 35:00 The other thing about about my situation is that the damage that was done in my head was permanent after the brain surgery. So in order to remove the faulty blood vessel that was in my head that burst, they actually physically had to damage my brain. They had to remove a blood vessel, and that negatively impacted my brain. Not only that, they had to go in from behind my ear, and they had to go in four centimeters, which is around two inches from my ear, into the center of my brain, where near the cerebellum. Bill Gasiamis 35:36 So they’re going to get past a lot of brain matter to get there, and it’s possible to interfere with a lot of the brain as you’re going through. So when I woke up that the deficits that I had were permanent and they’re not going to change. So my journey of recovery, I feel like I’m fully recovered, but I have the scars, they have invisible scars, as well as the scar on the back of my head, the invisible scars of the brain surgery, and that’s the only way I can describe it, to people who have never had a stroke, is like, you know, some people have sports injury. Bill Gasiamis 36:15 And they’ve damaged their knee or their ankle or their elbow or something, or their shoulder, and they are perfectly healthy and going about business, but they’ve always got a knee injury, or they’ve always got the shoulder injury, and it always lets them know that ‘Hey, I’m still here, and this thing hasn’t really healed. So that’s kind of me, that’s the sort of situation that I’m in, and also that does impact my mental health in a way, where I wake up some mornings and I often feel like ‘Oh man, like this thing is still here. 13 years later, my leg is still feeling like this. Finding Healing Through Conversation After Ischemic Stroke Bill Gasiamis 36:57 I’m still getting out of bed and it’s weird and all this kind of stuff, right? So I’ve still got to, I’ve still got to kind of bring myself around, from feeling sorry for myself, from feeling bad about it, and trying to just come back to focusing on my blessings to have some gratitude on all the things that went well and then the podcast actually helps me with this journey as well, because I get to talk about it once an episode with all my amazing guests, you know, for 340 episodes now. Bill Gasiamis 37:33 So it’s like, I’m not, I haven’t fully recovered, but I’m well and I’m healthy, I’m appreciative, and I’m going about life. Do you know what I mean right? When people ask me, though ‘How’s your health? I know they’re being polite, so I don’t have the whole conversation with them. I just say ‘I’m good, I’m actually doing well, thank you. Tony Barfield 37:59 So, for you, the podcast is almost like therapy. Bill Gasiamis 38:02 Indeed, it is. It really is, yep. And I was in therapy. So for people who don’t know about me, who are just finding the podcast and just learning about me, I was in therapy for probably about 10, years before my stroke and talk therapy, it was me just chatting to a counselor every so often to download, to get things off my mind, to help me understand myself, my world, my situation, all that kind of thing. So I had a real good habit of talking and expressing and getting things off my chest and out of my head, and then after stroke. Bill Gasiamis 38:44 Well, I just continued that, because it was so useful and helpful, I continued that. And I still go to therapy, not as often, and I don’t need it as often, but sometimes I have, you know, we have a bad run in family. Something goes wrong, you know, somebody gets comes unwell, and as much as I support my wife, and she supports me, sometimes I need support from a neutral member that’s not part of the family, that can guide me, advise me, or even ask, even say, like ‘Maybe it’s you, Bill, Maybe you’re the problem. Bill Gasiamis 39:21 Maybe you haven’t worked out that this drama that is is occurring is because of you. And it’s like ‘Oh, okay, that’s why I go. The talk therapy is amazing, the podcast supplements that for me. So when I interview people, and I they share their story like you, and I help you reach other people and create awareness. That’s exactly why I started my podcast. I wanted to do that, but I didn’t want to do it alone. I wanted a team of people to do it with me, and that’s what you guys are. You’re part of my team, and we express that and we make a difference. Bill Gasiamis 39:57 Because I’ve had podcasts I’ve interviewed people about their stroke and then they’ve explained their symptoms. And I had a lady once who sent me a message to say that she researched the symptoms, right? She researched a pain in the neck, blah, blah, blah, some kind of weird search, and it showed her a YouTube video of somebody who I interviewed who had the same symptoms, and that lady was experiencing a they called it a vertebral artery dissection, so she had some damage inside her blood vessel, and that was causing a clot, and that was causing a stroke. Bill Gasiamis 40:36 Before she had the stroke, she found the podcast episode, she went to the hospital and told them, I’m having a stroke. You guys need to check my neck. Immediately they did, and they avoided the whole thing. Tony Barfield 40:52 Wow, amazing. Bill Gasiamis 40:54 That’s amazing. So it’s brilliant, this whole thing is brilliant. The the journey for me, I can’t see it ending this whole recovery and talking about it and putting information out there. I don’t think it’s something that I’m going to stop doing anytime soon. Whenever I’m not doing it, I’m always thinking, it’s been a while, you know, I should have had an episode out by now. I should have recorded something by now. So that’s kind of my journey. And being a month in, I try to and also coach stroke survivors. Bill Gasiamis 41:25 So I try to explain to them what to be patient if you can have develop patience that is such an important skill, because what that does is that takes your mind away from all the things you can’t control, and allows you to come back and just deal with the things you can control, like your food intake. Perfect example, you know that is, it doesn’t cost you extra. You don’t have to go anywhere to do it. You just have to be mindful of what goes in your mouth. And if it’s not healing you, it might be harming you, and that’s kind of how you have to think about it. Bill Gasiamis 42:02 So if people can be patient during stroke recovery, I know I’m simplifying it, and it’s not my intention to simplify, but if people can be patient, then recovery happens better. And when somebody has had a stroke and they’ve had it a month ago or six weeks ago, I tried to describe it as it’s like you just walked into the coffee table and you just hit your toe. That’s how early on in the recovery you are, like you just did it, and now you’re in ‘Oh man, this thing has to stop hurting for a while. Then it has to stop throbbing, and then you have to check it and see if it’s broken. Bill Gasiamis 42:46 And then you have to help her rehabilitate it, and then three weeks later, you’re putting your shoe on and it’s a bit tighter, and you’re going ‘Oh my God, that’s the toe that I smashed on the coffee table couple of weeks ago. So that’s how I try to bring people into understanding what stroke is. It’s definitely a journey, it’s not a broken bone. You don’t heal from stroke in six weeks, and then you put your shoe on, and you’re you’re in business, your brain takes a lot longer to heal, and it needs you to stop getting in the way of healing it. Bill Gasiamis 43:19 Because some people don’t realize that by eating, continuing to drink sodas, continuing to drink alcohol after a stroke, continuing to eat at McDonald’s, for example, you’re delaying the recovery of that brain, and you’re extending the healing time that it’s going to take, and you’re impacting it negatively. And you need to also get out of your own way from your brain’s recovery and not be the person who’s making the recovery worse. Tony Barfield 43:49 That makes a lot of sense, but I don’t think you should never stop. I think you need to continue, you know, spreading the word, educating people on what was going on, because it’s more I don’t think strokes are going to stop. Bill Gasiamis 44:08 Indeed, they’re not. Tony Barfield 44:09 Right, they’re not going to stop. Bill Gasiamis 44:10 So, I put out this weird thing a couple of months ago. I said it like for the first time, I think we’re going to record 1000 of these podcasts, and I’m at 340 and it’s taken me from 2000 and about 15 to now. It’s taken me 10 years to get to 340 so really, wow, I’ve got a long way to go, right? Tony Barfield 44:37 So do people contact you every day. I mean, how does that happen? Bill Gasiamis 44:43 Almost every day now, yeah. Tony Barfield 44:45 Nice, nice. Bill Gasiamis 44:46 At the beginning, I was reaching out to people on social media and just saying ‘Hey, I’ve had a stroke. I know you’ve had a stroke. You’re talking about it on your social media. Would you mind sharing it on the podcast? And they would come on, and they would join me. And it was a lot of work to find people, because I had to do the research and find them. And then I created a contact page, the same one that you filled out. Bill Gasiamis 45:09 And I said ‘What am I just start talking about, inviting people onto the podcast during the show and tell them to go to my contact page, let them fill it out, and then they’ll find it. So what’s good about it is the website is now gaining what’s the word? Google is sort of deciding that it’s worth showing to a lot of people, and that’s where I’m finding my new viewers and new listeners. People are doing a first Google search, my show comes up the first time and bang, they’re all over it ‘Okay, oh my God, there’s 340 episodes. Bill Gasiamis 45:44 Let me start listening, and then it’s ‘Oh, he wants us to reach out and be on the podcast. Let me send him an email. And there’s only one thing to qualify for my podcast that you need. Unfortunately, you only need to have had a stroke and you’ve had a stroke, qualify, and it’s a terrible way to qualify for something, but that’s the only prerequisite. Tony Barfield 46:08 Well, I didn’t, you know. I didn’t think I thought you just had so many people waiting to get in, I didn’t think, you know, responding so fast. I like, wow, yeah, and we, I was gonna be chosen. Bill Gasiamis 46:18 And I do sometimes there’s 10, 12, 13 podcasts. Booked in because you have that booking calendar. I have a couple of slots. I have two slots on a Saturday, and sometimes I have two slots on a Friday and what I do is I allow people to just go and pick the one that suits them, going forward about six weeks into my calendar, so my calendar has got bookings for the next six weeks and I’m always talking to somebody, and that is just, that’s how many there are. Bill Gasiamis 46:53 So there may be, there may not be 12 episodes booked, but there’s probably, there’s probably about eight or nine booked, so it’s cool, man, like it’s so good, and it’s, as you can see, it’s very simple to do. Most people will get the notifications in the email inbox that it’s confirmed. Here’s the link to the YouTube to the Zoom video, and I mean, it’s straightforward, I try and make it as easy as possible so that a stroke survivor who’s challenged, you know, doesn’t have to overthink things and and worry about it too much. Bill Gasiamis 47:37 I’ve had people on the podcast who can’t speak Tony, like, can’t speak it because I have aphasia still. So everyone is welcome. You don’t have to sound and be perfect or anything like that. You’re welcome at any time, and we’ll work it out. We’ve got technology to work it out if we have to, you know? So, yeah, I love it, and I’m just so grateful that people like you just reach out and say ‘Let’s have a conversation. Spreading Awareness & The Role of Faith in Recovery After Ischemic Stroke Bill Gasiamis 48:07 It’s the thing that I was missing, you know, when I was going through it at the beginning, it’s like ‘Man, why is there nothing for stroke? And there’s so much for cancer and heart and all this stuff. It’s like, we need something for stroke. That’s the whole reason it exists. Tony Barfield 48:21 Absolutely, yeah, I think it’s a great way to get, you know, spread the word, like I said. So I’m thankful that I did get chosen and kind of helped spread the word as well. So, yeah, because I still a lot of people with, like, friends of mine, they don’t know. I mean, my church family knows, they know, school where I work at they know. But, you know, I got a big social media viewer, they don’t know. But I’m after this I’m gonna, if you allow me to put this podcast on my social media page. Bill Gasiamis 48:57 Yeah, right, when it’s live, for sure. Yeah, I’ll share some images that you can use and the links and all that kind of stuff. And, yeah, you can share that and let people know. So tell me about your faith and how, what kind of a role that’s played in in this whole journey. Tony Barfield 49:16 Well, I definitely believe in God. I believe God has kind of blessed me to get to this point like, when the stroke force happened. I was saying ‘You know, I was like, telling God, asking God, well, why me? You know what? You know, why? I gotta go through this. But now, over time, a little tear, I said, ‘Well, God probably doing this for me to spread the word to make other people will. So I can be a testimony to other people and how I overcame this, and what to do and what not to do. Tony Barfield 49:50 So I think, like I said, it’s a blessing in disguise. I really believe that the blessing of the sky. So I really believe God, you know, I know he works everything out on his own time, you know, I just truly believe that he has something else for me to do that maybe I didn’t want to do, I was going to different ways, but this is the path that I need to go now in my life, you know. So I said it’s a blessing. It’s definitely a blessing in disguise for me to experience the answers of being a survivor as well, because it could have been other way around. Tony Barfield 49:51 Like I said, I know some people who had strokes or anything and they passed away, so I’m here for a reason. You’re here for a reason, and we connected for a reason. So I think it all was going to work out. So I definitely believe God has a hand in all of this, I truly believe that. So, just for me, to do the right thing from this point on. Bill Gasiamis 50:48 And were you a regular at church on a Sunday? Is that Sunday that you did regularly? Tony Barfield 50:53 Absolutely, yeah, actually, I’m a deacon in my church. Yeah, I’m a deacon. So, I’m a faithful member, and I haven’t been consistent stroke, because it’s a little tough for me to get up, can’t drive and stuff like that, so a little tough for me to and I read for my pastor, say I was one of the one that read for my pastor. So I haven’t done that in a while, but I’m gonna try to gradually get back into that, since my strength is a little better, because after stroke, I got so tired doing little nothing. Tony Barfield 51:27 So now that my strength is a little bit imma, kind of gradually go back into my role and attend a little bit more, because I enjoy going to church. I really do enjoy going to church and being around the members. So I just believe, like I said, this is the way God has opened my eyes on certain things and allow me to be a testimony to somebody else who may be going through and maybe knowing not what to do. So I’m all, I’m always going to say as a it’s a blessing in disguise. Bill Gasiamis 51:56 Man, that’ll be a good day the first day you get back to church. Tony Barfield 51:59 Yeah, absolutely, real good, so that I can celebrate with her myself. Future Outlook and Goals After Ischemic Stroke Bill Gasiamis 52:06 Yes, and with work, how are you talking to your employer about your time off and then how you’re going to transition back? What that is that discussion like? Tony Barfield 52:21 Well, I had, actually, I had that discussion last week, and from my primary doctor, because he going to try to allow me to go back and just gradually, and I do have a good Michael, say, a co worker, but he’s like my sidekick that has been covering for me since I’ve been going, and that’s really been doing a good job. And I just want to give a shout out to him. His name is Wes Tillerson, so he been doing a great job. So Imma, try to get back next month. Tony Barfield 52:49 And just gradually, gradually go in there to see how things, see how things go, and if, and physically if I’m able to continue to do the same thing that I’ve been doing, and I’m just going to see how that goes. And they, I mean, they give me the time they told me to come back, you know, when I’m able. So that’s a blessing too, because they, they could’ve, fired me because I haven’t been there, but it, they give me the time to recover, and they understand. So I appreciate the school as well and the staff allowing me to take my time to come back. Bill Gasiamis 53:23 Yeah, and is your medical insurance part of your employment at the school? Tony Barfield 53:29 Yes, it has been helping out, be able to take it incur some of the costs. And it’s not, it has been 100% out of my pocket. So the insurance been covering a lot of it, and still is so. And it was exactly thinking about after, you know, on my vacation time and everything, if that would have wore it out then I had short term disability that would have kicked in, but that would only cover like 80% of my pay. Tony Barfield 53:59 So, I mean, so far so good. I still believe to pay my bills and keep everything for my wife, she doesn’t work, so I still need to keep everything, keep all the lights on, food on the table. That’s been a blessing of will. Bill Gasiamis 54:14 Yeah, it’s interesting, isn’t it? Like stroke really decreases your ability to be productive and get back to work and do the things that you need to do for your family, for you know, to cover your obligations, to meet your payments for whatever you’re doing. Like, it’s just a it’s just such a difficult thing, like, it just takes space in all these places, and it makes it really difficult for for people to manage that, and I know that then people also, at the worst time, they get medical bills, you know. Bill Gasiamis 54:47 Then they have to deal with medical bills, but they’re dealing with them at the same time that they can’t work. And it’s like, it’s a catch 22 you can’t go one way. You can’t go the other. It’s really difficult. Alright, so it sounds like everything’s kind of working out really well for you right now. Things are sort of in the really good place, and you’ve got everything you need to move forward and continue healing, right? Tony Barfield 55:16 I mean, I’m not up under any type of pressure as far as going back and returning back to work. So that’s a good thing. And it is told me ‘Hey, whenever you’re ready to come back, come back, and everything can still be here waiting for you. So they want me to come back. No strong and I guess not 100% but being able to kind of perform some of the duties, whatever, like I was before the stroke. Tony Barfield 55:37 So they haven’t, they have a pressure man at all. So that’s one thing that I appreciate the school for, for being that understanding and praying for me as well. So, yeah, so it’s just good. I’m in a good place right now. Bill Gasiamis 55:52 And the kids, are they still living with you guys? Tony Barfield 55:57 Yes, I got my son, who’s 15, and I have a grandson that’s 13, that’s living with me. He’s the one they kind of help out as well. Boys gonna be boys, you know, they still kind of get on my nerve a little bit, yeah, that kind of, I kind of explained to him. I don’t need all the stress and all the fighting and wrestling in the house. So they’re teenagers, so they’re gonna do that, but, yeah, they’ve been a great help as well. Bill Gasiamis 56:25 So your grandson is 13 and your son is 15, right? Tony Barfield 56:30 My youngest son is 15 years, yeah. Bill Gasiamis 56:32 So your grandson is wrestling with his uncle? Tony Barfield 56:37 Exactly, exactly. Bill Gasiamis 56:38 And the misbehaving your and your son as an uncle should be more responsible. Tony Barfield 56:44 He should be right. He’s right in with the Father, he’s right there with just hardly, kind of keep them to they’re so competitive. Yeah, both of them play basketball, so they’re so competitive amongst each other. So there’s always something going on in the house and I can hear all the noise downstairs that’s going on upstairs. Bill Gasiamis 57:04 Yeah, if I was a 15 year old uncle of a 13 year old, I’d be pulling prank on them all. Tony Barfield 57:12 And he does, he lets him know. Who’s the oldest, but the 13 year old, he’s a little tough for two so he was tough. He was a tough kid, so he don’t try to get away with the stuff. But yes, it’s kind of funny at the same time. Bill Gasiamis 57:26 Yeah, it’s hilarious. My kids were the first time, were 11 and and 15 when I had the first stroke, and then all through the whole second and third lead and brain surgery and learning how to walk in, they were still teenagers the whole time. And man, it was hard, because when I was really unwell and had fatigue and needed calm and quiet, because noise made my brain hurt and and fighting made me exhausted and all that kind of stuff, they just wouldn’t. Bill Gasiamis 58:00 They just wouldn’t. I couldn’t get them to calm down. And I know you’re teenagers and they’re just being teenagers, but you really need to stop doing what you’re doing, because I can’t cope. I’m at my wit’s end. Tony Barfield 58:13 I understand, I get. Bill Gasiamis 58:19 Yeah, you have to give them a little bit of grace, because they are going through that phase in their life, and they’re just doing what every teenager would do, but that’s still hard, really hard. Tony Barfield 58:30 It is hard so that part they don’t understand, because they just think ‘Oh, that’s just there, do what we do. Yes, they don’t understand that part. And I hate to raise my voice to get my point and call, because it wheels me out, same time. So I just tell him say ‘Man, y’all got to understand that noise is driving me crazy. Yeah, you know. But these teenagers, so I expect that. So I’d like you said I had to have another grace with him. Bill Gasiamis 58:58 And that’s that part where, when you don’t look like you’ve had a stroke, trying to convince a teenager that when you’ve actually had is really serious, and it’s really difficult to deal with. It’s even harder, I mean, it’s impossible. You look fine and you’re just grumpy. You’re just yelling, right? Whatever. Tony Barfield 59:18 Yeah, Mr. Bad guy, right. And my wife, she just don’t, you know, she don’t hear what I hear, because she like the noise is even louder, versus before the stroke, yeah, so just to look things they do, is just, I get annoyed by it, but they don’t realize what they’re doing, but they just don’t being, being bored. So, yeah, I kind of cope with it at the same time. Bill Gasiamis 59:41 It’s interesting that you said the noises are loud, they’re more irritating, aren’t they? They’re the same noises, but they’re more irritating. Tony Barfield 59:47 They live more irritated. Yeah, any little thing kind of irritates me not look far as noise wise. So that why I don’t try to raise my voice as much, because that even irritates me. It was kind of exhausting to even do that. I kind of had to say ‘Okay, well, then we kind of block it out some kind of way. But yeah. Bill Gasiamis 1:00:06 This is the part where expanding ourselves, like us, learning and growing and doing things differently is really important, because you can’t go at the teenagers the way that you used to. That’s what I stopped doing, is I stopped going at them the way I used to, as well to so that helped improve the situation for me a little bit, I wasn’t irritating myself further than they had already irritated me. Bill Gasiamis 1:00:33 And then I was trying to develop new ways to communicate, talking, explaining over and over, you know, to try and get them to shift their behavior without me doing it the old way, because the old way didn’t work anyway, and it wasn’t working now, right? Tony Barfield 1:00:50 Right, exactly. Bill Gasiamis 1:00:51 ‘Okay, we need a new way. What is that? Is there one right? Tony Barfield 1:00:56 And me, you know, growing up with my father, my dad is, ex military guy, so he’s got no zero nonsense, you know, since I gotta use that approach that that’s how I grew up. But I don’t, I just, I give up with that one. So I’m trying to do a lot more explaining to him, versus the whole Old School. I’m old school anyway, so that, you know, with your new kids today, that don’t work. Tony Barfield 1:01:23 Yeah, it doesn’t work. But, I try to be a little bit more patient with them so I can kind of have a better understanding within myself, I won’t wear myself out by doing, you know, doing all that. So, yeah, I had to be a little bit more patient with them. Bill Gasiamis 1:01:37 You have to step up, even though you’re the one that’s going through recovery, you have to step up as well. Tony Barfield 1:01:45 Yeah, exactly, exactly. Bill Gasiamis 1:01:47 Tell me about what do you think has been the hardest thing about stroke for you so far? Do you think? Tony Barfield 1:01:55 Well, I think trying to get back to the norm and like I said, I was always kind of busy and active. So now I see myself as not being that now. So that’s that’s kind of a little difficult challenge for me, because I was always the one that’s doing things and moving and stuff and getting things done. So now I’m at a limitation now, because any little thing we was a little worse in the beginning. I just get so tired, so easy, you know, I don’t know, just trying to overthink things, or whatever it is. Tony Barfield 1:02:25 But just the exhaust, being exhausted, a lot more that’s a little more I had to get used to, and I try to do things, but I just wear myself out. Even from taking a shower, simple shower that I get exhausted from doing that, you know, just really exhausted, taking a shower, and I had to come out of the shower and kind of stretch across the bed a little bit, just kind of, kind of recuperate from that. Tony Barfield 1:02:50 So, that’s, that’s been a little challenge. So I guess over time, I’m hoping, I’m praying, over time, that’ll get better, and it has gotten better. So I’m just thinking that’ll get better over time. Bill Gasiamis 1:03:01 It will, yeah, it’ll continue to improve. What has stroke taught you? What have been the lessons that you’ve taken out of this at the moment? Tony Barfield 1:03:12 Well, like I said, the main thing is health, my diet, my blood pressure, what I eat. That has taught me, that has taught me that because I wasn’t doing it. Bill, I’m serious. I mean, I would eat junk food, like I said, I had high blood pressure. I know I had high blood pressure and I was on medication, but I never take it. I never took it because it made me a little nauseous at the time. It made me sick a little bit, so I wouldn’t take it, but my pressure was always 190 over 90. Tony Barfield 1:03:47 Something always, you know. So now it’s made me more aware of my blood pressure, and I check it every day, least two or three times a day. Make sure it’s normal. I make sure I take my medication, I make sure I’m eating the right stuff, putting the right stuff in my mouth and drinking the right things. I drink more water than I have it, I think I have ever done in my life now. So those things are kind of taught me some things, and there’s certain foods that I used to eat, I just don’t want them no more, which I like I said, I think that’s a blessing. Tony Barfield 1:04:19 So that’s what it has taught me and just being aware of my body, just overall, being aware of my body and recognize certain things that it’s doing, you know, saying so that’s kind of taught me what to recognize certain things within myself. Bill Gasiamis 1:04:34 Yeah, that’s good, since you joined us specifically to spread awareness and to reach other people. What is something that you’d like to let people know about, like, what kind of like? Is there some wisdom that has downloaded from somewhere that you’d like to pass on let people know about this whole situation? Tony Barfield 1:05:01 Well, absolutely, I think everyone should be considered a diet. I think that’s the major thing with any health condition, is your diet, and what are you eating what are you drinking, exercise. I think that’s important, and this ‘Listen to your body. Just listen to it now, even though, at the time I was having a stroke, I didn’t, I don’t know, I wasn’t aware of any symptoms, but prior to that, I knew with some things that I should have done that I wasn’t doing. So now that has heightened my awareness now on what to do and what not to do. Tony Barfield 1:05:37 So I think I would spread that message across the board, as far as just listen to your body and just make sure you’re taking care of your body. Because we only got one life. We only have one life, and we only got one body. We need to take care of it, you know. And if we even go by with this, even spiritually this, you know, this body is a temple, and we need to make sure we’re taking care of the temple. So that’s important, that what I would spread to anyone that’s listening. Bill Gasiamis 1:06:06 Yes, beautiful Tony, I really appreciate you reaching out so early on in your recovery and making it about other people. I hope this interview and the podcast continues to help you. Thank you so much for joining me. Tony Barfield 1:06:23 And thank you, and I appreciate what you’re doing and continue to do and I support you any way that you need me to help you. Closing Remarks and Gratitude Bill Gasiamis 1:06:29 Well, that brings us to the end of another episode with Tony Barfield, from his experience one month after ischemic stroke to his ongoing recovery journey. Tony’s story is a powerful reminder of the resilience of the human spirit. If today’s conversation resonated with you, please consider leaving a comment, liking and subscribing, whether you’re watching on YouTube or listening on your favorite podcast platform, a five-star rating or a review helps others discover this community of support. Bill Gasiamis 1:07:03 Remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available on Amazon or at recoveryafterstroke.com/book, and if you’d like to support the podcast directly, please visit patreon.com/recoveryafterstroke. Your support helps cover the ongoing costs of recording, hosting, editing and much more, ensuring that we can keep sharing these valuable stories. Thank you for being here and listening and making this podcast a part of your recovery journey. I’ll see you in the next episode. Intro 1:07:38 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog podcast or video material controlled this website, or content, is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis. Intro 1:08:08 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. 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Recovery After Stroke

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How I Overcame Stroke, Cancer & MND – Clive Branson’s Powerful Story 1:17:35

5 weeks назад1:17:35

1:17:35

Navigating Stroke Recovery, MND, and Prostate Cancer: Finding Strength in Adversity Facing Multiple Diagnoses: A Test of Resilience Receiving a diagnosis of stroke, motor neuron disease (MND), or prostate cancer is life-changing on its own. But what happens when someone faces all three? It’s a reality that demands incredible strength, resilience, and adaptability . Many stroke survivors focus on regaining mobility, speech, and independence, only to find themselves navigating further health challenges down the road. A diagnosis of MND or prostate cancer after stroke can feel overwhelming, making the road to recovery seem even steeper. However, through determination, support, and a shift in mindset , it is possible to find meaning, hope, and quality of life despite these hurdles. The Overlapping Challenges of Stroke, MND, and Cancer Each condition comes with its own set of challenges, but when combined, they create a unique and complex journey: Stroke Recovery A stroke can affect mobility, cognition, speech, and energy levels , requiring a tailored rehabilitation approach. Physical therapy, occupational therapy, and speech therapy play a crucial role in regaining function and independence. Motor Neuron Disease (MND) Unlike stroke, MND is a progressive neurological condition that weakens muscles over time. While there is no cure, management strategies such as physiotherapy, adaptive equipment, and speech devices can help improve quality of life. Prostate Cancer Prostate cancer treatments—including radiation, surgery, and hormone therapy —can lead to fatigue, urinary incontinence, and emotional strain . Combined with stroke and MND, maintaining strength and energy levels becomes even more challenging. Managing Life with Stroke, MND, and Cancer 1. Mindset and Mental Resilience A growth mindset is essential when facing multiple health challenges. It’s normal to experience frustration, fear, or grief, but shifting focus toward small victories can make all the difference. Journaling, meditation, and counseling can provide emotional support and clarity. 2. Rehabilitation and Adaptation Even after stroke recovery, those with MND may find themselves needing additional mobility aids . Finding new ways to stay active, like adaptive exercises, hydrotherapy, and assisted walking devices , can help maintain strength and mobility for as long as possible. 3. Managing Energy and Fatigue Fatigue is a common issue across all three conditions. Strategies like: Prioritizing rest and pacing daily activities Eating a nutrient-rich diet that supports energy levels Engaging in light movement or stretching 4. Building a Strong Support System Navigating these diagnoses alone can feel overwhelming. Community support, online groups, and family involvement can offer much-needed encouragement. Many survivors find purpose and motivation through volunteering or mentoring others . 5. Advocating for Your Health With multiple conditions, medical care can become complex. It’s important to: Keep a detailed record of symptoms and medications Ask doctors about treatment interactions and alternative therapies Consider clinical trials and emerging treatments for MND or cancer Hope, Strength, and a New Perspective Facing stroke, MND, and prostate cancer is undeniably tough, but it is possible to redefine what life after these diagnoses looks like . Many survivors discover unexpected strength, new passions, and deeper appreciation for life . You are not alone in this journey. Whether through rehabilitation, community support, or personal resilience , there is always a way forward. Share Your Story If you or a loved one is navigating life after stroke, MND, or prostate cancer, I’d love to hear from you! Share your experience in the comments or connect with our community for support. Get More Support If you found this helpful, check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened , available on Amazon or recoveryafterstroke.com/book . Stroke, Cancer & MND: How Clive Branson Found Strength in Adversity From stroke to cancer to MND, Clive Branson’s journey proves that resilience and mindset can redefine recovery. Watch his inspiring story now. Clive Branson’s Website Instagram LinkedIn Highlights: 00:00 Introduction and Acknowledgements 01:50 Clive Branson’s Introduction 03:39 Initial Stroke Experience and Deficits 08:18 Impact of Subsequent Health Challenges 13:51 Volunteering and Mental Health Advocacy 23:33 The Power of Support in Recovery 36:37 Prostate Cancer Diagnosis and Treatment 45:30 Expect the Best, Prepare for the Worst: Prostate Cancer Awareness 54:05 Mental Health and Personal Growth 57:58 Resilience, Connection, and Reinvention 1:13:16 Final Thoughts and Encouragement Transcript: Introduction and Acknowledgements Bill Gasiamis 0:00 Welcome everyone before we dive into today’s powerful conversation, I just wanted to take a moment to thank you for being a part of this amazing community. Whether you’re sharing the podcast, leaving reviews or simply tuning in each week, your support makes all the difference. Together, we’re creating a space where stroke survivors, caregivers and allies can feel seen, heard and inspired. Since 2015 I’ve been covering the cost of producing the recovery after stroke podcast to ensure that stroke survivors, caregivers and their loved ones have access to free, valuable resources. Bill Gasiamis 0:39 If you’ve received tremendous value from these episodes and would like to support the show you can do so at patreon.com/recoveryafterstroke, your generosity helps me continue to bring you these important conversations. A huge thank you to my most recent Patreon supporters, Ted, Rick, Deanne, Pat Bryce and Alessandro. Your support means the world to me and helps ensure that I can keep producing these episodes that support stroke survivors everywhere. I also want to take a moment to address something important. Bill Gasiamis 1:15 If you’re not in a position to support the podcast financially, simply listening to the ads without skipping them is also a huge help. These ads are essential in offsetting some of the production costs, and just by letting them play, you’re contributing to keeping these resources alive for stroke survivors and their families. I’m incredibly grateful for everyone who listens, supports and engages with the podcast in any capacity. And remember my book The Unexpected Way That A Stroke Became The Best Thing That Happened. Introduction – Clive Branson Bill Gasiamis 1:50 It’s been a valuable resource for many stroke survivors and their families, offering practical guidance and hope during difficult times. You can find it on Amazon by searching my name, Bill Gasiamis, or by heading to recoveryafterstroke.com/book. Now let’s get into today’s episode. My guest Clive Branson has faced an incredible journey, not just surviving a stroke, but also overcoming immense physical and mental health challenges, including a motor neurons disease diagnosis and prostate cancer. Bill Gasiamis 2:27 In this conversation, Clive shares how he navigated the darkest moments, found resilience and now dedicates his life to inspiring and supporting others. This is an episode filled with wisdom, perspective and hope let’s jump in. Clive Branson, welcome to the podcast. Clive Branson 2:45 Thank you, Bill. Thank you very much for asking me, and it’s nice to meet you. Bill Gasiamis 2:51 Tell me a little bit about what happened to you. Clive Branson 2:54 Okay, well, where to start really, I was 37 years old, I’m married. I’ve been married for a million years to a wonderful lady that I’ve known since we were 12 or 13 years old, and we’ve been married for nearly 30 years now, but we’ve got four boys, so it’s a busy house. Now, I’ve been in the Royal Air Force, and then I did nearly 20 years with the Ministry of Defense, and I was probably classed as Mr. Ordinary, really. However, I did have a brain hemorrhage when I was born, but sort of fully recovered from that. Clive Branson – Initial Stroke Experience and Deficits Clive Branson 3:39 But I’ve always had migraine headaches, quite badly, to be honest. So that’s a little bit of relevant background. So I’m 37 I’m at home, and I’m lying on the couch because I’ve had a headache, which is no surprise to anybody. My wife, my brother-in-law and one of my boys was at home, so I wake up, no any sort of extra pain or distress, and my brother in law says to me ‘Oh, you’re back in the room, then Clive, you’re back with us. And what I replied back was complete gobbledygook, and it didn’t really register with me. I was probably just waking up. Clive Branson 4:24 Certainly registered with him, say that again, and it was exactly the same. So again, no pain or distress, just the realization that I could not connect my brain with my mouth. So I did a bit of a bloke thing, and I just thought, I’ll stand up and shake it off, get some fresh air. Perhaps only made a few paces, and I collapsed. So I had a seizure. I’ve never had seizures before, obviously far more scary for the. Was that were there than me, because at this point I was sort of out of it. And yeah, I was sort of blue lighted in. They obviously didn’t know what was wrong with me. Clive Branson 5:10 It was actually the first responders that came before the ambulance, and they got the oxygen in, etc. Told my wife not to be on her own, that there was, they started the scans and stuff, and my brain had started to swell. Then they discovered that there was a clot and it had gone up to the artery. And thankfully, Bill, somebody was up there, up there was looking over me because as they were prepping me for surgery and other things. Thankfully, the clock dissolved and it passed. So I had possibly a week in hospital, and I was unsteady on my feet. Clive Branson 5:54 And I either but a few stops and gaps in my conversations and my speech and but it was definitely Bill, it was definitely one of those moments really, you know, I was in hospital with an awful lot of poorly people who definitely weren’t going home, whole, if at all, and I just wanted my life back, you know, at any cost, it was a massive realization that I knew how lucky I’d been and and so I mean, I’m 54 now. My medical history between now and then is unbelievable. But yeah, that was the start of of a challenging time Bill, to be honest. Bill Gasiamis 6:41 I hear you, so it was in 2007 is that right? Clive Branson 6:46 That’s right. Bill Gasiamis 6:48 It’s been a while, right? And what are your deficits? Do you have any deficits? Clive Branson 6:54 Well, I think about this a lot Bill, my memory was definitely affected. I’m not pretending I had a photographic memory or anything like that, but I think my short term memory really struggled. And also, if I’m talking to somebody, particularly in a professional capacity, and there’s a quite a lot of information thrown at me in one go. It might be a formula they’re trying to explain to me, particularly if it involves numbers, I’ll catch the first bit. And I have what they want me to understand, but I can’t then process that. Clive Branson 7:37 And that hasn’t changed from then to now. If anything, it’s probably got a bit worse, but that might just be because I’m getting old now, but yeah that and fatigue, I think fatigue was something that it was obviously worse for the first few weeks and getting home, but I don’t think my battery life has been anything like, you know, I’ve been in the RAF, as I said, I’ve done a bit of sort of novice box, I was relatively fit, and, as I say, really sort of active family life. But yeah, my battery life definitely didn’t recover. Impact of Subsequent Health Challenges For Clive Branson Bill Gasiamis 8:18 You know, before, the reason I asked you those questions because I was going to kind of, you know, I like to play the devil’s advocate. You don’t look like someone who had a stroke. You don’t sound like someone who had a stroke. You’re saying a stroke story. It happened in 2007 you were 37 and my question was going to be, why? Even now, why such a long time after the stroke, did you feel the need that you need to get on a podcast and share your story, like, why? Clive Branson 8:53 Because of what’s happened to me since, and because of my various medical challenges, both physical and mental. I’ve reflected on my life in general. I’ve reflected on my own mortality, and it’s very apparent to me that that stroke was the trigger for my whole body, changing, my whole capacity for certain things changing. And I mean, I can’t pretend that there’s any kind of link between my motor neurone disease and certainly my prostate cancer. Clive Branson 9:40 But in terms of my ability to fight back from certain situations, I’ve had to almost understand my body a lot more and be in tune with my body a lot more. And that started in 2007 not when I had the last five years of my life. Bill Gasiamis 10:05 Let’s take a quick pause here before we continue with Clive Branson’s incredible journey. I wanted to share a little bit about how you can support the podcast. If this podcast has added value to your life, I’d love your support on Patreon by becoming a patreon at patreon.com/recoveryafterstroke, you’ll help me continue to create these conversations while joining a community dedicated to stroke recovery, resilience and growth. Another simple way to support the podcast is by listening to the ads without skipping them. Bill Gasiamis 10:37 These ads help cover the production costs, and just by letting them play, you’re helping keep this resources free for stroke survivors and their families. If a Patreon membership is impossible for you right now, this is a great way to contribute and ensure that I can keep bringing you these valuable conversations. And if you haven’t already, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s available on Amazon and recoveryafterstroke.com/book. Bill Gasiamis 10:37 And it’s packed with insights, practical guidance and motivation for your recovery journey. Now let’s get back to Clive Branson and hear more about how he’s navigating life after stroke. MND and prostate cancer and why he believes resilience and perspective are key to overcoming life’s toughest challenges. Bill Gasiamis 11:28 I hear, okay, I was going to ask you about the current medical conditions that you’re dealing with as well. So prostate cancer was that first was the MND diagnosed first. Clive Branson 11:42 The MND was first Bill. There was a perfect storm for me, to be honest, 2018 andobviously, this is a stroke recovery podcast, so I don’t want to sort of take up too much time with this, but there was a perfect storm, and that involved, I lost both my parents completely different sort of one Parkinson’s, one COVID, but I got the diagnosis for slowly progressive Motor Neurone Disease. Then I discovered that I’d got what was, stage two prostate cancer, and it is currently stage three, and then I had a mental health health breakdown. Clive Branson 12:24 I ended up in psychiatric hospital, and then I started to rebuild myself, and that’s because I’ve got a support network, I’ve got family that it’s just not everybody’s got that Bill, have they? And in my rebuilding, when I found my confidence again, and when I found my new identity, and the identity crisis was a challenge. My whole picture, from this, from the stroke on, is something that I got me thinking. I thought, I’ve got a real story to tell that might just help others. And it’s not because it’s a ‘Where is me tale. It’s because I’ve learned so much. Clive Branson 12:28 I’ve learned good things. I’ve learned things that help, that things that people told me that were completely incorrect. There was all sorts of conspiracy theories as to why I’d had a stroke, but ultimately they discovered that it was because I’ve got a hole in my heart, got to 37 and knew nothing about it. I’m sure you’ll understand this, but it transpires that you can have a defect in your heart from birth, two, three mil hole, and you’ll never know anything about it, but I don’t do anything by half. So mine was 12 mil. That’s how the clot had got through. Volunteering and Mental Health Advocacy Clive Branson 13:51 So I had heart surgery to close that. So, I’m summing up this really Bill to try and explain that. It was definitely the stroke everything else up to today that I now use to say to people ‘Hey, there’s two things here, one, you’re an awful lot stronger than you ever could imagine you were, and you can build on that. By the way, your the resilience you discover is not, that’s not it, you can build on that you can definitely overcome adversity, you really can, and you can adopt a positive mindset and you can maintain it. So that’s what I do. Clive Branson 14:30 I volunteer up and down the country and for the prison service. On a voluntary basis, I speak to prisons, I speak to staff, to actively demonstrate these things that I’m articulating to you, and it’s a two way street Bill, because it’s so rewarding personally for me. Whenever I come back from one of these talks, I feel buoyed by the whole experience. So, that’s where I’m at today, and that’s how I view it. Bill Gasiamis 15:02 I like the way you view it. So let’s unpack that a little bit, you talked about you hit rock bottom, it sounds like when you got to that stage where you needed treatment for your mental health. Was it inevitable, looking back, that you were always going to get there, and then when you got there, did you know that you were in a good place to come out of rock bottom? Bill Gasiamis 15:31 Because I describe rock bottom as the place to start from, like it’s a new beginning, is the way I describe it. And I’m not saying that everyone’s journey to rock bottom is pleasant, or like mine, or anything like that, but it’s definitely if you flip what you see it as if you can’t get lower than where you are, then there’s only way, one way to go. Clive Branson 15:59 Yeah, Bill, honestly, you’re speaking my language. We hear so much about the downside of trauma, but we don’t hear enough about the growth from trauma, and growth in terms of personal development and confidence and all these wonderful things can, without any shadow of a doubt, come from trauma, and that definitely was the case for me, and things that I’ve read and listened to and heard about your good self, I think that’s exactly the same as well. To answer your original part of the question, Bill. Clive Branson 16:36 If you’d have said to any of my friends or colleagues, certainly, when in my professional career with the MOD, do you think Clive would be a candidate to have his mental health compromise that I said ‘You must be joking, Clive, you know, red hair, big mouth. You know, we’re the one we go to for problems, not a chance. Clive Branson 16:54 But again, I can demonstrate that we’re not far away from having our mental health compromise, because life’s not easy, is it? None of us get an easy ride. So no, I and nobody around me would have ever thought that I would hit those levels and have the breakdown that I had. Bill Gasiamis 17:17 Post traumatic growth. That’s the term, right? I didn’t know there was a word for the term when I was going through my periods of growth, and it’s post traumatic. Growth is not something that you potentially chase after. Not everyone knows that they’re going after it, they’re just doing it, and they’re not knowing, and there’s certain steps. My book is a book about post traumatic growth. Bill Gasiamis 17:43 It’s 10 steps to get to the stage where you can say stroke was the best thing that happened to you, not from a medical perspective, from a personal development and growth perspective, because it gets you to a place where you don’t recognize yourself. Your identity is gone, everything you knew to be true is being questioned, your mortality is being questioned. You’re coming to terms with so many things. And of course, we’re not equipped to handle so much stuff, so in such a short amount of time, if we’ve never been there before, you don’t know how to navigate it, right? Bill Gasiamis 18:22 So it’s like, well, everything shuts down. You go into a depression or a mental health state that you don’t recognize, that seems terrible at the time, because it’s terrible, however, it kind of has that opportunity, creates an opportunity for a reset to occur. And that’s the thing about that’s the thing about mental health issues that I kind of want to bring attention to, is that when you’re at rock bottom, if you’ve heard this before, you’ve reached rock bottom, yeah, then what I’m saying is it’s not the last destination. Bill Gasiamis 19:02 It’s just a stop along the way to wherever you’re heading, right? And the mindset part that you mentioned, the a growth mindset, instead of a fixed mindset, it’s again, it’s a growth mindset is about, not actually forever feeling like you’re growing. It’s like a North Star, it’s having it in your priority. I’m going to do things that help me grow. Volunteering is a key criteria to help you grow. Volunteering is key. People don’t realize how important it is. Bill Gasiamis 19:42 And then what happens is, as you have this growth mindset as your North Star, you’ll find days where it’s like stuff it I’m not doing this anymore. I don’t want to do this anymore. I’m not going to try anymore. You switch backwards to a negative mindset. The key there is to stay there for a short amount of time, just enough. It’s like that pity party that people talk about is just enough time have your pity party and then move on, and then just sort of start moving forward. What I love about volunteering is you’re making you’re doing it. Bill Gasiamis 20:19 You’re doing something that’s not about you. You’re doing it about so you stop thinking about yourself, A, B, you get rewarded for making other people smile, feel better about themselves, have a conversation with you, etc. You’re you’ve changed your mindset from a it changes your mindset from a negative mindset to a growth mindset immediately, because you have to find a way to get out of the house. You have to find a way to get to the destination, to have the energy to talk to present, to do whatever it is that you’re going to do. Bill Gasiamis 20:54 And then you’ve gotta find a way back. And then you gotta find a way to do it all over again in your worst time, in the time where you’re struggling, where everything’s terrible, and all of a sudden, when you’re doing that, and you’re in a space where there’s other people that need your support and need your help, what happens is you forget about all of your ailments and all of your dramas that you’re going through at the time. It’s just a wonderful thing that you can do for people. I think the reward back is far greater than the energy that you put out, that you have to. Clive Branson 21:33 No question Bill, no question. I mean, you know, I’m fortunate enough to be on sort of some rosters, some speaker Bureau rosters. So I’m hoping that one day I’ll be able to provide for my family properly by doing that. And I work in the corporate world, and I’m growing that however I approached the prison service in this country, and it took me a while to do it, to get to the right person. It was LinkedIn, actually, that helped me, where one of the governors, you know, he realized he got a new stalker, and he said, I better respond to this guy. Clive Branson 22:12 And he said ‘Look, come in, come to the prison and meet me. And, long story short, I said ‘Look, there’s no catch here, I’m not looking for anything at all, but I will come and I’m not learning from lines from textbooks. I’m not doing death by PowerPoint. I will share my story with brutal honesty, with it, with an injection of humor, but it will resonate, and I think that it can do some good, and it went from there. And you just get recommended from one prison to another, and you’re absolutely right in what you say. And as I say, I should have said to me 10 years ago. Clive Branson 22:53 The benefits of volunteering. I made all the usual excuses not haven’t got time, you know this, to do something for someone or for a group of people, when there’s absolutely nothing in it for you. But then when you can get in your car and think, I’ve really done a good thing there. I know that sounds corny, but goodness me, it is a wonderful, wonderful thing, it really is. And yeah, and when you were talking there, Bill about the realization and the drive to do this and to get your direction back, I can remember when that happened to me. The Power of Support in the Recovery of Clive Branson Clive Branson 23:33 Because one of the biggest problems I had in terms of the mental challenges was because I’d completely lost perspective, you know, totally lost perspective, which I firmly believe that is one of our superpowers. I mean, it just is. I’d lost that, but it was my wife, and she was sitting across the table in the psychiatric hospital. I’ve been in there a couple of weeks. I was in there for 10 weeks in total, but I just recognized a Bill on this day, properly recognized her. And thought, wow, hang on a minute, that’s fake. Clive Branson 24:08 You know, that’s the lady I’ve known since I was 12, and so she’s here amongst the noise, visiting a husband in the psychiatric hospital, but then she’s gotta go back in the car, go home, act really normal, and do all the mundane things, pay the bills, see to the children, etc, and then she’s got to get back in the car and visit me tomorrow with a smile on her face. And we’re a team. Now she needs me, and I definitely need her. Clive Branson 24:39 And that’s the day perspective came back, and I just very, very, you know, just very slowly started to think, I need to sort of think about things. I need to consider where I am, and I need to build myself and get stronger. And that’s where it started. That’s where I got that’s where the growth, and certainly from a mental health point of view came from, it was wonderful. Bill Gasiamis 25:06 Yeah, it reminds me of my journey after brain surgery. Same thing, you know, my father in law passed away just in November last year. Clive Branson 25:17 Sorry to hear that. Bill Gasiamis 25:18 Yeah, thank you. And 10 years ago to the same month his wife passed away, and that was during the same week that I got diagnosed with the third bleed, and was told that was sorry a week after I got diagnosed with the third bleed and I was told that I need brain surgery, so now my wife’s preparing a funeral with her sisters and her father to bury her mum. Bill Gasiamis 25:45 And a week after that, I’m going into surgery for my brain, and then I’m in hospital for a month. And to me, her mother passing just completely goes out of my mind because, yeah, I’ve got other things to focus on and to worry about, right? Preoccupied, and I’m in hospital for a month and a bit, and she is doing all of the stuff you just described. She’s putting on a brave face coming to me going home, and probably, you know, doing the family stuff and putting on a brave face for them. Bill Gasiamis 26:22 And probably not much time is spent on reflecting on her mother’s passing and what that means to her and how that’s impacted her family and all that type of stuff. It’s just life doesn’t end because you had a stroke, you have MND, you have prostate cancer? You had a heart attack, you had a hole in your heart. It doesn’t end. Everything continues, and you can’t just capitulate. You can’t just fall in a heap. I suppose you can do it for a short amount of time, while you’re resetting and you’re trying to wonder, which is the road I need to take out. Bill Gasiamis 26:59 But it’s gotta be a short time now that might be days or months or weeks. It doesn’t matter, as long as over the span of your lifetime. It’s just a small window where you fell in a heap and you thought everything was, well, everything was sort of useless or helpless, or, I’m not sure what the word is and that’s what I find people who are sharing their stories on podcasts like this have done that. They’ve we all have similar steps that we’ve taken to get to that point. Bill Gasiamis 27:32 And then sharing the stories also seems to be a bit of a a key ingredient to the next phase of your development and your growth. And I’ve had a lot of stroke survivors who will come on the podcast 5, 10, 20 years after the stroke, it’s still profoundly, unbelievably. Unbelievable to me that somebody still has to share a stroke story after 20 years like, it makes sense to me. Bill Gasiamis 28:12 But it’s also really bizarre that stroke has that kind of a long lasting impact on people, and still, 20 years later, one day, jumped onto Google, did a Google search for stroke podcasts, found my podcast, and then thought ‘You know what? I think I need to jump on there and tell my story. Yeah, obviously the storytelling is part of the healing process as well. Clive Branson 28:37 It says, yeah, no, it really isn’t you know your this platform that you’ve created, Bill, and the people that you’ve had on it, and obviously your wisdom and is a real eye opener. I learn an awful lot by listening to your episodes. It’s not just because it’s an interesting listen and actually it’s educational as well, and it clearly does an awful lot a great deal for the people that share their stories, and I am now one of them. So I really do sort of congratulate you on that, but no, you’re absolutely right. Clive Branson 28:37 You know, it was without any doubt, shadow of a doubt, the first time that I ever had to sort of look at my own mortality. But I did it in such a way where I just thought ‘Wow, how lucky am I. How impossibly difficult, you know, that could have been so much worse for both me and my loved ones, and here I am. So it was definitely the start of it all, but touching on a little bit of what you said there, I believe, and sometimes, for some people, this is a little bit contentious, but I believe positivity is a choice Bill. Ultimately, we get a lot of advice. Clive Branson 29:56 We get a lot of help. We listen to people like you, ultimately, the key to keeping that period of depression or feeling low to a minimum like you said, is because you have to accept it, you have to own it, and you have to make the decision ‘Okay, well, I can stay here and I can see what’s next, or what can I actually do to find myself again and find something completely different? If that mean, we all pivot in life. Clive Branson 30:31 Sometimes we have to, and sometimes we want to, and there’s nothing wrong with that, and I suppose it links into the growth from trauma, but it’s definitely happened to me. No question about it. Bill Gasiamis 30:43 Positivity is being able to answer this question, either answering it well or badly. It doesn’t matter, as long as you can answer it and it’s like ‘Okay, what’s good about this situation right now? And if you’re thinking is shallow, and you’re thinking ‘Okay, I’ve just been diagnosed with a stroke. There’s nothing good about this situation right now. Well, then there’s really hard to find a positive spin out of it, right or or even what’s funny about this right now? Bill Gasiamis 31:12 If you know you’re like me and weird, you look at the funny things that happened in my medical, in my whole medical journey, and waiting for that, I was going home after my pre-surgery appointment. They do all the tests and scans, and they want to make sure that I’m ready for surgery, physically, and I had another episode. I don’t know what to describe it as, but I felt like really light headed, I was kind of out of this world. I was feeling strange sensations on my face and on my body. Bill Gasiamis 31:56 And I thought I was having another bleed like in hospital while I was there. So we went to emergency. We were waiting there, and in that time, I’m really unwell and concerned about my health, my mother in law had just been buried a week earlier. I’m going into brain surgery in a week. And there was, I’ve shared this story before there was this kid who was on the spectrum somewhere, with autism somewhere there, and had been to the was a teenager had been to the toilet and come back. Clive Branson 32:32 And was holding onto the armrest that I was holding onto. And we were kind of, you know, our hands were touching, or whatever. And his mom asked him ‘Did you wash your hands after you went to the toilet? And all of my stroke symptoms everything went away. Only thing I could do was focus on whether or not he had washed his hands. And I didn’t ask, and I didn’t respond anyway, strangely or whatever, I just got up and went to the toilet and washed my hands, and came and sat down. Clive Branson 33:06 Oh, it’s wonderful. Bill Gasiamis 33:07 Yeah, now there’s, you know, in amongst all the disaster that was my life at that moment, it really made me on reflection, it was a really funny moment. It made me completely overcome all of my stroke concerns and go and wash my hands and then come and sit back down and then resume my stroke problems. I mean, it’s weird, yeah, it’s about asking yourself that question. It’s like ‘Okay, what’s good about this right now? And that what’s good can be that I’m just, I’m in a hospital, and I’m being cared for. Bill Gasiamis 33:46 Somebody is sitting next to me in the hospital who’s a friend, or whatever, like, that’s how you develop that focus on what’s good in this really terrible moment and distract yourself from the terrible moment, because sometimes focusing on the terrible moments at the wrong time is not good. Bill Gasiamis 34:11 Because it could get your heart rate going in the wrong direction. It could get you stressed out, freaked out, and then that could make matters worse. So you want to be able to manage your condition, a little bit as much as you can. And that’s just one real quick, easy hack, that’s how you do it. Clive Branson 34:33 Absolutely, yeah. I remember when I woke up in the hospital after the stroke, and obviously my wife was there, and we had a bit of a laugh and a joke quite quickly, really, because, bless her, she was desperate to say ‘You do know who I am, don’t you? You know it’s me, don’t you? And we laugh about it now, because it’s almost like a funny theme from a scene from a film where we don’t need to worry about diplomatic here. Do you know who I am? And you know, we laughed and joked. Clive Branson 35:09 Obviously, I wished I’d have had the presence of mind to say ‘Who are you and I’d have milked it for a while, but obviously I just woken up. But yeah, these are funny little things that we talk about we reflect on and I touched on it earlier. I was aware very quickly that the guys and girls in this ward were had gotten a lot worse than I had. And that didn’t not from a gloating period. I felt grateful, I felt genuinely touched and grateful. I got on like a house on fire with the guy next to me, and we helped each other. Clive Branson 35:48 And we, you know, his wife couldn’t get in as much as my wife could. So we sort of shared visits and things, and the humanity side of it, but I was desperate to get out and get back at it. But I think in life, Bill and you know, as a family, we respect humor. I think it’s wonderful thing, we all respect it. But let’s for example, with the MND, I didn’t want to make that a taboo subject for my loved ones or my friends. No, not because I’m that twisted and weird, but because I didn’t want them to worry. Clive Branson – Prostate Cancer Diagnosis and Treatment Clive Branson 36:37 I didn’t want them to tread on eggshells. I didn’t ever for them to feel that they’d said the wrong thing, and it stood us in good stead as a family, because if they want to talk about it, they can talk about it. If not, that’s great. And the prostate cancer is exactly the same. I’m only just now having treatment for that. I’m in the middle of having my external beam radiotherapy, and again, if they want to, if we had to open conversations about it, and that will continue. And I think that’s really important. Bill Gasiamis 37:13 Yeah, I’m going to pause for a moment. I’m going to go grab a tissue when I come back, just so we don’t forget, which literally be in 30 seconds. I’m going to talk about, I want to talk about your, your MND diagnosis, how you came to notice that. I think it’s important about that. And then we’ll talk about your prostate diagnosis and how you came to know about that. There’ll be men listening, and I think we should share that. Clive Branson 37:40 You go and do your thing, won’t be sick, I’m worried Bill Gasiamis 39:10 I have morning allergies and my nose, it’s all runny. Clive Branson 39:16 Yeah, I sometimes have hay fever through the through the summer. And to be honest, it’s some summers it’s not too bad, and others, it’s yet or there’s nothing worse. Bill Gasiamis 39:28 And the allergies isn’t exactly what I have. So annoying anyhow. So I want to talk about how you came to become aware that there was another issue with your health, specifically about the MND. How do you notice that there’s something not right? Clive Branson 39:53 Okay, yeah. Well, I was walking my youngest, Alfie, to school. So this is around about 2015 maybe 2016, and every now and again my ankle would just go really loose my left side, no pain at all. Just, you know, goodness me, I might go over on my ankle here, and you just think it’s nothing, a trap nerve or something, and you walk it off, but very slowly but surely, it became an issue from once a week to twice a week, just almost every other day. And I was banging my toe on things on a step or something like that. Clive Branson 40:34 So I was seeing a neurologist, Bill about my headaches, and had been for quite some time. So I’ve been to the GP about this issue, about my ankle. So he instigated all the scans on my spine, my neck and all sorts of issues to make sure that there was no mechanical problem, trapped nerve, etc, until we got to the point where he said ‘Look, Clive, you’re already seeing your neurologist. I think you should mention it to him, because in my personal opinion, I think we might be looking at a neurological issue. So I did just that. Clive Branson 41:15 And the neurologist said ‘Okay, Clive, and he needed, he did a few rudimental tests on the sort of push, pull muscle tests. But he said, I’m going to have to track the systems Clive. There’s no sort of quick, sort of answer to this. There’s nothing glaringly obvious.,I’m going to track it over a period of time, and while we do it, we’ll do well, what turned out to be every sort of test imaginable, really. And of course, what I didn’t understand or appreciate was they were eliminating all the various things that it could have been. Clive Branson 41:45 But, yeah, scans, head, brain scans, nerve study tests, blood tests, all sorts of things. So we eventually got to the point where it was probably about 18 months where that’s a long time when you know you’re waiting for an answer or a headline or a name or something. So eventually, Bill, he said ‘Okay, Mr. Branson, I’m going to refer you to an Oxford Hospital, which is about two hours away from where I live. So I said ‘Okay, why? Why Oxford? And he said ‘Well, it’s the Center of Excellence for motor neurone disease. That was the first time that had been mentioned. Clive Branson 42:26 But it did go over my head a little bit, but I did have the presence of mind to say, Okay, are you sending me there because you don’t know whether I’ve got MND, or is it because you think I have, at which point he said ‘Oh, it’s because I think you have. And you must understand that if you have there is no treatment, and I was out the door. Thankfully, the appointment for Oxford came through very quickly, certainly within 10 at the most, 14 days. Clive Branson 42:53 So they’ve got all almost two years worth of evidence in front of them by this time, and they really are sort of leaders in their field to professors, and they looked at the evidence, and they did do a few rudimental tests similar what he’d done 18 months before, but it was the evidence that made the decision. They said ‘We’re sorry to tell you you’ve got sort of slow, progressive motor neuron disease. So I go there every sort of six to eight months, they track it. Clive Branson 43:25 I now wear a splint on my left side for walking because it does the strength and the flexibility and the stability that the foot in the ankle and the calf should do. My left arms mildly weaker than my right and my core strengths, not great, but I’m doing really well, so much better than they ever imagined, to the point bill where last year I said ‘Is there any chance we can look at this diagnosis perhaps differently? Would you be prepared to repeat the tests that I had elsewhere? Would you do them here? And they agreed to do that, but it was just reaffirmed the diagnosis. Clive Branson 44:12 But so an incredibly difficult time Bill, really difficult time to sort of process it to decide, how do we communicate it without doing some big announcement. But Vic does what Vic. She did what she does, and she did, you know, she took control and she spoke to people as and when it was appropriate. And like I said before, it’s not a taboo subject, so that’s how I discovered that one. Bill Gasiamis 44:42 No, here I am again, straight into the laughter. It’s like, it’s that whole example of, like, nothing goes on hold because you had a stroke. Like, you’re not that special, that you can deal with it all on your own. Everything goes to on pause around you, and you know you’re going to have this perfect opportunity to deal with it. No shits going to get real, life’s going to continue to happen, and we it’s our responsibility to step up, gain the skills grow up beyond our 37 years and become a better version of ourselves to deal with the crap that’s coming down the pipeline. Expect the Best, Prepare for the Worst: Prostate Cancer Awareness Bill Gasiamis 45:30 Because there’s plenty to come we and there’s no choice you have to you gotta deal with it, and you gotta expect, I love this saying, expect the best, prepare for the worst. It’s great, isn’t it? Kind of what we’ve gotta do, right? So you’re dealing with that, you’re dealing with all the aftermath of stroke, and you’re also dealing with prostate cancer, stage three. How did you first notice that? And so the men that are listening should be aware of that, especially middle aged men. Bill Gasiamis 46:10 I’m 50, anyone kind of from around the age of 40 onwards, needs to pay attention and understand the signs and potential symptoms of what prostate cancer feels like and how it impacts the body before, in the early stages. So give us a bit of an insight into that. Clive Branson 46:35 Yeah, it’s a really important message, Bill, something I feel sort of really passionate about. So, so I’m my my son introduced me to the world of podcasts because I’m a bit of a technophobe. So I was, you know, I was starting to listen to sort of music that I hadn’t listened to before, but I was listening to podcasts, and I was some of them were slightly medical, etc. But nothing too deep, but just to expand my my awareness. But the one thing that was happening all the time was. Clive Branson 47:05 When you’re approaching 50, you should probably get your PSA count checked, which thankfully, it’s not an uncomfortable physical examination in the in your GPS room anymore. It’s simply a blood test, which, it’s a bit ironic, Bill, because I am the biggest girls blouse when it comes to needles. I am woeful. But there you go. So I said to the doctor, my GP. I said ‘Look, I give blood regularly for the MND, etc. Is there anything can you? Can you add this count to the last the latest test? Which, of course, he did. So it was just a blood test. Clive Branson 47:41 But I get a call a few days later and he said ‘Clive, your PSA count is so low it’s 3.2 now I believe the acceptable normal range is anywhere between one and four or I think so. Mine was okay, really, and I had no symptoms, nothing physical to be concerned about at all. This was just me feeling responsible because I was approaching 50 at the time, so but he said ‘I’m going to refer you anyway. And I don’t know really Bill whether the MND was in the back of his mind. I don’t know, but he referred me anyway. But so I saw a wonderful, wonderful consultant. Clive Branson 48:24 And he looked at it, looked at it, and he listened, and he said ‘Clive, I would feel better if I could do an MRI scan, which he did. Went back to see him, Clive, I’d feel better if we did a biopsy test, which, again, okay, you just go with it, and then bang. He said ‘You’ve got stage two prostate cancer, so against no symptoms and and a PSA count. That wouldn’t alarm anybody. You wouldn’t relate it to it at all. So I’ve got prostate cancer, I got cancer on both sides of the prostate, but it was contained. I wanted the prostate taken out. Clive Branson 49:06 But because of the MND, because the trajectory of the MND bill is it doesn’t change. So it’s individualistic, so if you’ve got it aggressively, it stays aggressive. And the tragedy is they cannot slow it down, but conversely, if it’s slow, it doesn’t speed up. However, to have the prostate removed, it’s quite an invasive operation, and it involves quite a number of muscle groups, and the thinking was that, because of the MND, the muscle groups might not bounce back as well as is in a healthy person, so they wouldn’t do it. So, long story short. Clive Branson 49:43 We finally got to the point where the tumor’s grown. It’s showing signs of aggravating in my lymph nodes. So they said ‘Okay, let’s start hormone replacement therapy I’ve been on. That for three months, and I’ll be on that for two years, and I go for external beam radiotherapy. So it’s targeted radiotherapy, therapy beams that zap the tumor. Basically, I have to go to hospital every morning, 20 times, not Saturday and Sunday, but Monday to Friday, 20 visits. I’m only there for about an hour in total, and then the success rate is very good. Clive Branson 50:35 And after about eight weeks, after it’s finished, I’ll have a consultation with an up to date scan where it will tell me that the tumor has been thrashed and it is no longer in existence. Bill Gasiamis 50:50 Yeah, excellent. So is that procedure, that laser therapy procedure? Is that taxing? Do you then have a day of being quiet and relaxed and chilled out to get over that? How does it feel after it’s done? Clive Branson 51:08 Yeah, good question. It’s nowhere near as bad as chemotherapy, which will be the next stage, if it hasn’t been quite as successful as we’re all hoping, but I’m sure it will be. But no, it tiredness and fatigue is the biggest downside to it. That’s all really so I do feel tired when I come home, and that will slightly increase as the treatment goes through those 20 days. But considering what they’re doing and how they’re doing it, it’s a small price to pay, in my personal opinion, and just in terms of awareness. Clive Branson 51:45 There’s something else that’s available out there that, again, they wouldn’t do for me because of the MND, but it’s something that everybody should know about, and it seems that they don’t. And this treatment is called brachi therapy, and it’s a much smaller operation. It’s a one off, and they basically insert radioactive seeds into the prostate, and they kill the cancer off over a sort of 6 to 12 month period. You don’t have to have them, have them taken out, and the success rate is excellent. Clive Branson 52:19 But I didn’t know anything about this. And as I speak to people and and try and spread awareness, I come across so many times where people think, what on earth that which was my reaction? So, you know, thank you for giving me the opportunity to sort of tell people about that Bill, because it should be much. It should be out there. Bill Gasiamis 52:39 So there’s been a lot of really good sort of developments in treating prostate situations, whether it’s not cancerous or it is cancerous, and seems like they’re making really good progress in definitely making it less dramatic and traumatic for people going through it, and there’s a lot of prevention stuff that can be done. The PSA test is a blood test now, where previously was a rectal exam to your GP, and you had to somehow get over the idea that the GP would have to do a rectal exam, using a finger or whatever. Bill Gasiamis 53:27 And feeling the prostate to sort of try and work out what condition it was in. And I imagine that wouldn’t be very accurate either. It certainly wouldn’t give people an insight into whether there was cells there or early stage cells or whatever. So there’s a lot of things that men can do. So all the men that are listening, who are maybe over the age of 40 or our age or older, have never had a PSA blood test done before. All they’ve gotta do is go to the GP during the regular checkup, and go ‘Can you please check my PSA also. Mental Health and Personal Growth Bill Gasiamis 54:05 If there’s any men noticing any difference with their erectile situation or just the way things feel down there, the way that it’s operating, whether the way that urine is being passed, etc, any situations like that, just go to the GP, start the process off as early as possible, because the sooner you get onto it, the better the outcome, and the more opportunities you have to treat it. And it’s not something that has to be, taboo anymore, because it was really taboo back in the day when men weren’t as willing, I suppose, to talk about that kind of stuff. Bill Gasiamis 54:48 Or to think about that kind of stuff, or to attend to that kind of stuff, theyreally struggled to, perhaps, speak to their GP about it, and as a results, a lot of men didn’t get support, and that didn’t work out for them. So, yeah, really important now, with work and your career and all the things that you were doing, where is that? How are you keeping busy these days, other than lots of medical appointments to doctors. Clive Branson 55:26 Yeah, I am a one man drain on the National Health Service here in England. Bill, I wear that with pride, I can’t deny that, but I’m slowly being confident enough to call myself an inspirational speaker now, Bill. And as I said before, I don’t hide the fact that I want to get to the point where I can provide for my family by doing that. Clive Branson 55:54 But yeah, it’s more than that. I feel passionate about it, and I firmly believe, and the testimonials that I’ve received, they’re as positive and as humbling in equal measure, so they are landing, and it’s helping people so that, that’s my journey. Now, that’s my challenge, and I absolutely love it. Bill Gasiamis 56:22 That’s great challenge, that’s my challenge right now. I want to transition from my full time job to also speaking more often and getting paid to speak. I’ve got a bit of a idea of what I want to talk about. Want to talk about post traumatic growth. I want to let people know that it exists so that people who find themselves in a terrible situation one day might go, I remember that guy spoke about that thing at that work function, that they, or I might look into that a little bit deeper. Bill Gasiamis 56:56 And it’s more. It’s less about inspirational, because I know you use the word, but I know what you mean. It’s less about inspirational, it’s more about educational, isn’t it? It’s like, really, it’s about saying ‘Hey, if I can do it anyone can. Clive Branson 57:13 Yeah, it really is, it’s as simple as that. I mean, I don’t I never use words ‘You know, I was broken or, you know, reframing words and putting positive spin on it is not as difficult, and sometimes we’re doing it without realizing it anyway. So, yeah, there is a lot of education in there. And it’s about encouraging people, empowering them, making them realize that if I can do it, you can do it. There was nothing, and there’s still nothing special about me, but the decisions I’ve made and the passion I’ve got to make it, so that’s all I need. Clive Branson – Resilience, Connection, and Reinvention Bill Gasiamis 57:58 What kind of role did you have at the Royal Air Force, and do you think the training that you went through and the career path that you followed, do you think that has held you in good stead for tackling this type of challenge? Clive Branson 58:13 Absolutely, Bill, so I was only in the Royal Air Force for three years, and I was an armorer, I was an engineer, had a fantastic time. Absolutely, went in virtually straight from school, and yeah, best thing I ever did, but now, I spent 17 years in the Ministry of Defense within industrial relations. So I was involved with the trade unions, I was involved with senior HR from a sort of strategic level. So I could be in a one to one grievance. Clive Branson 58:48 One day, I could be speaking to 300 people the next about, some things that the management, which we’re opposing to take proposing to take office. So that’s how I cut my teeth, in terms of learning to speak to people. That’s how I developed people skills. So yeah, is the short answer, it really did. It really did teach me how to connect with people. Because connecting with people is a privilege. You know, anybody can, sort of well, nearly anybody can get in, get up in front, and just speak or speak from a prompt or something. Clive Branson 59:25 But to actually look people in the eye with with authenticity and passion and and connect with people, that is a privilege. And that’s something obviously you’re doing with your speaking, and that’s something that I’m hoping to do more of my my youngest son said to me, you’ll like this. Bill. He said ‘Dad, you need to be on Instagram. And I said, I’m 54 I don’t even know what Instagram means. And he said ‘No, no, you need to be on Instagram. So you know, this is a shameless sort of plug here, but I am on Instagram, Branson Clive. Clive Branson 1:00:01 And you know, he’ll always say to me ‘Well, how many followers have you got Dad? And you know, it’s a bit of a competition there. So I’ve probably got about 30 followers. So perhaps that’s something that your listeners can help me out with, and yes, but he all on a serious note, he also put me on YouTube. And you know I really don’t know what I’m doing with it, Bill, and I don’t know where it’ll take me, but, you know, he’s opened it for me. It’s Clive’s Inspirational Hub, or no, it’s Clive’s Inspiration Hub, and I’m going to make use of it. Clive Branson 1:00:37 And I’m going to put useful stuff up there. I hope people subscribe to that, because it is about education, it’s about awareness, it’s about sharing, and it’s about putting people at ease to think well, because sometimes the first stage is just asking somebody a question or sharing whatever it is that’s troubling you, and if they’ve got a platform to do it, which is something that you’re wonderfully providing, it’s sometimes the first step, isn’t it? Bill Gasiamis 1:01:07 Yeah, I agree with that. I found out about YouTube in 2012 when it was still emerging. But in 2012 I had no idea what to do with it, either, so I just created a channel and just did nothing with it. Well, turns out, if I had started in 2012 this journey, you know, like literally two or three years into the whole YouTube experience, my channel could have been massive by now, but I didn’t have at the age of, say, 20 something, sorry, at the age of 37 I didn’t have a platform that I thought was, well, I didn’t have a platform. I had no idea what to talk about. Bill Gasiamis 1:01:53 I was just busy doing the things I was doing, right? So I did nothing with it. And then in 2014 when I started the podcast and started putting out little bits and pieces of information and episodes again, I had no idea what I was doing, and I was just putting it out there, just so that I could have somewhere where I could store the information, that I was sharing with other people, as an easy way for for me to refer people back to it. If everyone, anyone ever asked, do you have information on this? And I could just say ‘Yeah, just fo there and there. Bill Gasiamis 1:02:31 And because I was unwell, I was only putting up podcasts whenever I felt up to it, whenever I could do it. And that meant that it was sporadic and it wasn’t a lot of episodes, and it wasn’t consistent, and all that type of stuff so very difficult for people to catch on and for Google or YouTube to actually say you guys should follow this guy, and I just did my end of year review, which I always do at the end of the calendar year to check and see like where the podcast is at right. Bill Gasiamis 1:03:06 So between 2014 when I first put out a first few videos that were not related to stroke, when I first put out my first few videos, to the beginning of last year. So the beginning of 2024 the channel had reached, it had done about 250,000 downloads. So people over that period of time had watched 250,000 times. And I thought that was fantastic, right? It’s excellent, it’s interesting. Is in the last 12 months, it has doubled, incredible. It went from 250,000 from 2014 all the way through to the beginning of 2024 and then in one year it doubled. Clive Branson 1:03:58 So it’s incredible. Well done. Bill Gasiamis 1:04:00 Yeah, it’s awesome, right? So, and that’s the thing is, I’ve got no control of that too much, because YouTube determines who’s going to get the views and all that type of thing. But what I’m finding is that people are interacting more, and they’re grateful for the stories, they’re grateful for the stroke survivors who have shared. Bill Gasiamis 1:04:20 They’re leaving comments, they’re responding, and it’s become a community of like minded individuals who are looking at growth, looking at overcoming, who are looking at getting better, who are looking at, you know, moving beyond rock bottom. And, yeah, that’s what’s really cool about it, because I never expected that I would have a community of those types of people. Why I’m saying this is because, like, you doesn’t matter if you don’t know why you’re doing it when the coin drops and you know why you’re doing it. Bill Gasiamis 1:04:52 Then you’ve already started, and you’ve overcome the technological hurdles, and you’re not so afraid of it, and then it’s just like. I’ll put that there, and if somebody wants to watch it, it’s up to them. That’s it’s the whole thing, it’s just like going into the prisons and talking. There’s was no nothing in it for me, then there is now, because now that it’s gained momentum, if I could twist that and turn that into a career or an income or something like that, then I’m serving myself and the community, yeah? Bill Gasiamis 1:05:23 And it’s no better, it wouldn’t be a better way for me to have a career to serve the stroke community. I mean, that would be awesome, right? So that’s kind of my goal. That’s how it’s transitioning for me. Clive Branson 1:05:36 Well, that you’ve cleared a long time, you’ve done some incredible work, Bill, and yeah, I mean, where if you’ve gone from 2014 on the 250,000 downloads, and all of a sudden, in the last 12 months, that’s doubled? That’s testament to the people you’re reaching. And yeah, the engagement and the awareness and the education, so long may it continue, and if we ever speak again, let’s hope it’s 5 million next time. Bill Gasiamis 1:06:04 Well, I hope so too, mate. Well, as we wrap up, I want to ask you a couple of questions that I ask stroke survivors. Clive Branson 1:06:13 Sure. Bill Gasiamis 1:06:13 And normally, the questions are, what’s the hardest thing about stroke? I always leave that last bit stroke. But for you, there’s more than stroke, there’s other things. So I’m going to change the question a little bit to ‘What’s the hardest thing about your medical situations over the last few years? What was the hardest thing that sort of stands out for you? Clive Branson 1:06:40 I think the hardest thing and this surprises people when we’re talking about MND and cancer and all the other things, the hardest and biggest challenge for me and my family has been when my mental health was compromised, and getting that mental health back to a place where I got perspective, back and I found the New Clive, the bit of the old and a bit of the new, that has been the hardest challenge. And I don’t want people to think that I’ve got it all sorted now, because we haven’t have we, that we still have to manage these things. Clive Branson 1:07:17 We still have times where we feel vulnerable and we have to remind ourselves that we’re not the only person that’s feeling vulnerable. But it took me 54, years to realize, Bill, we have to live life on life’s terms. You know, we make plans and God laughs. So I accept that now with a smile on my face, but no, the answer to your question is, it was the mental health being compromised that was, and probably remains the biggest challenge. Bill Gasiamis 1:07:47 Yeah, I love that you said that you you haven’t got it licked, like it’s still something that you have to manage, that’s exactly it, right? It’s that North Star. It’s North Star is always to bigger and better things, better mental health, better physical health, better emotional health. North Star, sometimes we’re not going to be there, and knowing that and addressing that and dealing with that and allowing yourself not to be there. That’s really important as well. Bill Gasiamis 1:08:21 Yes, slightly different question, but similar in its nature. What’s something that you’ve learned in the last period of time that’s really been profound and shifted you into this new version of yourself, you know, this new what’s the word like into the wisdom that you have gained? Clive Branson 1:08:48 Yeah, great question. Well I without doubt, look at life through a different lens now, and that touches on the growth from trauma. So I perhaps have learned not to sweat the small stuff so much. But there’s something that I hang on to almost daily, that I’ve learned, and that is that I love and I am loved. Now it’s not that long ago, Bill, I was far too big and cool to come out with a statement like that, but it’s true. I love and I am loved, and that kind of helps you not sweat the small stuff and just reminds yourself of what really matters in life. Bill Gasiamis 1:09:48 I love that. It starts with ‘I love, because to receive love, you have to love and yeah, then it’s reciprocated. It’s just impossible not to reciprocate from the other side, and, you’re a typical British bloke, and you didn’t talk about that kind of stuff until the age of probably 50, or near 50 something, because you didn’t have to. Bill Gasiamis 1:10:14 You didn’t show love with words, you showed it with, bravado and actions and things other than love, other than words, I know all about that, mate. I’m the same bloke on the other side of the planet, doing exactly the same things. Clive Branson 1:10:32 Yeah. Well, good on you. Bill Gasiamis 1:10:35 What do you want to leave the listeners with? Like, what’s, is there a message? Is there some kind of, I’m not sure what it is, you know, wisdom or something that you’d like to just impart on the people who are listening? Clive Branson 1:10:53 Well, thank you for giving the opportunity to say that. Well, apart from my Instagram and YouTube details that, on a serious note, what I would really would like to leave them is, and I say this a lot, believe in yourself. Believe in yourself, because if you do genuinely believe, and it’s not about overconfidence or arrogance, but if you truly believe in yourself, that will be recognized, and people are far more likely to back you and support you if they’ve if that’s oozing out of your pause, so trust yourself a little bit. Clive Branson 1:11:40 Learn the art of Self Compassion and believe in yourself, because, as I said before ‘You are a lot stronger than you could ever have imagined. So that would be what I would like to leave some of your wonderful listeners and people that watch it too. Bill Gasiamis 1:11:58 That’s brilliant. I will ensure that everyone gets the opportunity to link to your Instagram and your YouTube. I’ll have those links in the show notes for anyone watching and listening go to recoveryafterstroke.com/episodes, to find those links. Also, if you’re watching on the YouTube channel, the links will be in the description, you’ll be able to go there and find that stuff. Clive Branson 1:12:22 Thank you so much. Bill Gasiamis 1:12:24 Yeah, my pleasure mate, thank you so much for joining me. I really appreciate it. Clive Branson 1:12:28 Hey, listen, you’re doing wonderful things, Bill, and your story is just mind blowing. And perhaps one day I can flip this on you and I can ask you some questions about your story, because you’re a remarkable human being. Bill Gasiamis 1:12:42 Anytime mate, it will be my pleasure. Thanks again for being on the podcast. That brings us to the end of this powerful episode with Clive Branson, from surviving a stroke at 37 to navigating life with MND and prostate cancer, Clive story is a testament to resilience perspective and the strength we can find even in the face of immense challenges, his dedication to helping others through speaking and advocacy is truly inspiring and probably at the center of why he’s doing so well. Final Thoughts and Encouragement From Clive Branson Bill Gasiamis 1:13:16 If today’s episode resonated with you, I’d love to hear from you, please leave a comment, like and subscribe on YouTube, and if you’re listening on Spotify or iTunes, a five star rating or review would mean the world to me, your feedback helps others discover the podcast and join our incredible community, and remember to check out my book The Unexpected Way That A Stroke Became The Best Thing That Happened, available on Amazon or at recoveryafterstroke.com/book. Bill Gasiamis 1:13:47 And if you’d like to support the podcast directly, you can do so at patreon.com/recoveryafterstroke. And remember, even if you’re not in a position to support the show financially, simply listening to the podcast and not skipping the ads, goes a long way in helping keep this podcast running, every little bit helps. Thank you for being a part of this journey, your support and engagement keeps this podcast going strong, and I’ll see you in the next episode. Intro 1:14:19 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog podcast or video material controlled this website, or content, is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis. Intro 1:14:49 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice, and should not be relied on as health advice. The information is generally. And may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Intro 1:15:13 Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. If you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Intro 1:15:38 Medical information changes constantly, while we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there you. The post How I Overcame Stroke, Cancer & MND – Clive Branson’s Powerful Story appeared first on Recovery After Stroke .…

Recovery After Stroke

1
How John Wagner Overcame 3 Strokes and Rediscovered Life 1:27:43

7 weeks назад1:27:43

1:27:43

Recovery from small stroke: John Wagner’s story of surviving 3 strokes, 2 Brain surgeries, and reclaiming his life will inspire your journey. Support The Recovery After Stroke Podcast On Patreon Highlights: 00:00 Introduction and Acknowledgements 02:46 John Wagner’s Introduction and Initial Stroke Experience 08:01 Causes and Diagnosis of Strokes 14:20 Medical Procedures and Recovery 26:01 Daily Life and Coping Strategies 27:36 Health and Lifestyle Changes 35:02 The Struggles and Sacrifices of Healing 44:44 Adapting to Ride: Overcoming Challenges in Recovery 56:11 Caregivers and Frustration: Navigating Stroke Recovery 59:19 Overcoming Stroke Challenges and Exploring Solutions 1:13:45 Future Outlook and Goals 1:20:09 Advice for Stroke Survivors Transcript: Recovery From Small Stroke: Introduction and Acknowledgements Bill Gasiamis 0:00 Welcome everyone before we dive into today’s extraordinary conversation, I want to take a moment to thank you for being part of this incredible community. Your support, whether it’s through sharing the podcast, leaving reviews or simply tuning in each week, makes such a massive difference. Together, we’re creating a space for stroke survivors, caregivers and allies, to feel seen, heard and inspired. Bill Gasiamis 0:29 Also in the most recent episodes, you may have heard me mentioned that since 2015 I’ve been personally covering all the costs of producing the Recovery After Stroke podcast to ensure stroke survivors, caregivers and their loved ones have access to free, valuable resources. Late last year, I decided to ask for help from those who feel they’ve received tremendous value from the podcast by supporting it on the Patreon page that can be found at www.patreon.com/recoveryafterstroke. Bill Gasiamis 1:07 I want to take a moment to express my half hour gratitude to everyone who has supported me in some way or another. Your encouragement, it truly keeps me going. A special thank you to my most recent Patreon supporters, Sean, Elizabeth, Brian and Heather, your generosity means the world to me and helps me ensure that I can continue creating episodes to support stroke survivors everywhere. I also would like to address a comment John today’s excellent guest made it near the end of the interview about his initial response to hearing or seeing ads in my episodes. Bill Gasiamis 1:46 And how he changed his thinking about ads after he realized the high value he was receiving from the interviews he was listening to. Simply put, these ads are essential to help offset some of the podcasts costs. If you’re unable to support the podcast in any other way, simply listening to the ads without skipping them goes a long way in keeping this project alive. I’m so grateful for everyone who listens, supports and engages with the podcast in any capacity. Bill Gasiamis 2:18 It means everything to me and helps me stay committed to creating episodes for the community on my way to 1000 episodes and beyond. Thank you. As always, I hope you’ll also allow me the small indulgence of reminding you about my book The Unexpected Way The Stroke Became The Best Thing That Happened. It’s been a resource for many stroke survivors and their loved ones offering practical guidance and hope during challenging times. John Wagner’s Introduction and Initial S mall Stroke Experience Bill Gasiamis 2:46 If you haven’t already, you can grab your copy on amazon.com by searching my name, Bill Gasiamis, or by going to recoveryafterstroke.com/book. Now, I’m thrilled to introduce today’s guest, John Wagner. John’s story is one of resilience, determination and learning to embrace life after incredible challenges, having survived three ischemic strokes, undergone two brain surgeries and a double bypass, John’s journey is nothing short of inspiring. Bill Gasiamis 3:19 He shares his insights into recovery, the importance of perseverance, and how he’s finding strength to live fully after such a life altering experience. Let’s jump in all right. John Wagner, welcome to the podcast. John Wagner 3:34 Thank you. Bill Gasiamis, nice to be here. Thank you, sir. Bill Gasiamis 3:38 Tell me a little bit about what happened to you. John Wagner 3:41 Well, in 2022 which was two and a half years ago, June. I was on my way to work here in suburban Chicago, getting ready to take a business trip to Mexico, of all places. But while I was at work getting ready to leave for the airport, I was going over some data, engineering data with a co worker. One of my other co workers called me on my phone in the office and said ‘Hey, John, can you see me before you leave? I said ‘Okay. So I finished up, went into his office, and we greeted each other. How you doing, Kev? Good. How you feeling? I said ‘I feel fine, why? John Wagner 4:24 He said ‘You found like you’ve had about 10 cocktails, drinks. I said ‘Really? He said ‘Yeah, and your mouth drooping a little bit over here, and I think you’re, you’re drooling. And I didn’t know what to think. I didn’t know anything about a stroke, I didn’t know what a stroke was. I didn’t never knew anybody that had a stroke, totally ignorant when it came to the subject. So but his uncle had had a stroke six months before a severe stroke. He knew the symptoms. He said ‘John, I think you’re having a stroke. So we did a couple. A test with arms, my head bad, arm drift. John Wagner 5:04 And he said ‘I wanted you to smile, and it was a little bit off. Wasn’t too bad, but he said ‘I think you’re having a stroke. I called an ambulance, and I was shocked. I said ‘Kev, I gotta go to the airport. I didn’t fight him on it, but he said ‘I think you’re having a stroke. None of these symptoms that I hear about last night I spoke at the hospital, which I do every two weeks, to stroke survivors, and we went over some of the symptoms, banging and all these painful things, I didn’t have that. So, these two EMTs showed up. They did a couple tests. John Wagner 5:45 They said ‘Yeah, think you’re having a stroke Mr. Wagner. I still didn’t understand the severity of it. They got me into an ambulance and raced me up to a hospital just on the edge of Chicago, here, fabulous hospital, and I got admitted, and they said ‘We’re not sure if you’re having a TIA or a full blown stroke. And I didn’t know what either one was, but they admitted me. They did CAT scan right away. They got me stabilized, and they said ‘Yeah, you’re having a stroke. So I was admitted to the hospital. John Wagner 6:23 The very next day in the hospital, I was speaking to a nurse practitioner who had been a treating people for strokes for 40 years, really newer stuff. We were sitting there talking, and she said ‘Are you feeling okay today? And I said ‘Yeah, I feel fine. Considering, she said ‘I gave you some medicine a couple minutes ago, a glass, and you just dropped it. You didn’t even know it. And I looked at her, I said ‘Really? She said ‘Yeah, I think you might be having another stroke. Sure enough, I had a second stroke in the hospital 12 hours after the first one. John Wagner 7:02 But I will go back to this is an important point that I was stressing last night as I spoke, and that is the amount of time that it took for them to analyze that I had a stroke, get me up to the hospital, get me stabilized, and use the medicine they were able to get rid of that clot that had agglomerated. You’re familiar with the anterior artery, two carotid arteries. John Wagner 7:32 And where the carotid arteries end are two arteries that go to your front lobes of your brain, called the anterior artery and the middle artery, and they bring oxygenated blood to the front lobes of your brain, and that was blocked, and that’s where my that’s where the clot was. It was an ischemic stroke that I had. Bill Gasiamis 7:56 So do they know the underlying cause of those clots? Causes and Diagnosis of S mall Strokes John Wagner 8:01 Funny, you said that. I asked the nurse the second day, I said ‘Another stroke? And she said ‘Yeah. I said, what can cause that? And she said ‘Oh, hot dogs drinking latent behavior. And I kind of raised my hand. I said ‘Well, I hate to say this, but I do check some of those boxes. But you know the when she showed me an x ray, she said ‘This is the clot, there’s the artery. And over years, it just slowly collapsed. She said, that happens. Yours didn’t happen in one day. John Wagner 8:43 Although I have type two diabetes and my blood pressure was high, not through the roof, but I never thought about that either. I never paid attention. I have high blood pressure, so what? I’m fine. I just went out and ran three miles. I’m okay . Bill Gasiamis 8:58 But you know, with your type two diabetes. Did a doctor ever say to you that puts you at higher risk of stroke? John Wagner 9:06 Yes. Clinic, when they diagnosed that, I was up there for something else, and they said, pretty sure you have type two diabetes. It was like speaking Russian. What are you talking about? I don’t know what it is. Can you be a little bit more descriptive. And he said ‘Well, your high blood pressure can sometimes cause a stroke. It’s like an old pipe that’s got a lot of calcium in it, eventually it breaks through. Bill Gasiamis 9:33 It also had high blood pressure. John Wagner 9:34 Yes, it was, I think it was about 140 over 75 or it was not through the roof, but it certainly wasn’t what it is today. Bill Gasiamis 9:45 So, tell me about that. Let’s go back about the diabetes. How long have you known that you’ve had diabetes? Bill Gasiamis 9:53 Okay, let’s take a quick pause to reflect on John’s incredible journey so far. Story. Is like, here’s a why I started this podcast to connect, inspire and provide hope to stroke survivors and their families. If this podcast has been a source of value for you, I’d love your support on Patreon. By becoming a patreon at patreon.com/recoveryafterstroke, you’ll not only help keep this podcast going, but also join a community of people dedicated to recovery and growth. Now let’s get back to John and hear more about how he’s not just surviving, but thriving after his strokes and surgeries. John Wagner 10:35 How long have I known? I’ve been treated for for the last year and a half, and I’m doing real well. I’ve got it under control, and changed my diet, lost weight, my A1C, my blood sugar is down dramatically. So once all this happened, I just made up my mind to do something about it. But wasn’t sure what the heck was happening. Bill Gasiamis 11:00 Is it medication dependent your type two diabetes? Do you need medications keep your blood? John Wagner 11:06 Yes, I’m taking three medications, which is not as many as some of the people I’ve talked to, but basically to control blood sugar and control blood pressure, although I’ve brought that down just by exercising, which is probably the best way. Bill Gasiamis 11:24 And how old are you, John? John Wagner 11:25 I’m going to be 73 in a month. So I had the stroke when I was 70. Bill Gasiamis 11:33 And before that, would you say that your health was pretty good? John Wagner 11:37 It was decent. I used to run cross country in high school and college. I was an athlete. I was used to running through pain and putting my body through hard work, which helped me. Actually, I’ll tell you about that later, but I just wasn’t in great shape. I let things go over the years, I could have been in much better shape. I didn’t drink a lot, didn’t smoke. And then it dawned on me, it can happen to anybody, anytime. John Wagner 12:06 So I think it caught, kind of caught up with me, though that was one of the things I went through, Bill, I got so angry at myself. You go through this and you’re angry at somebody, but you have to be mad at yourself, because nobody else got me here except me. Bill Gasiamis 12:22 What kind of work do you do? John Wagner 12:24 I’m a technical engineer for a manufacturing company. We work with automotive companies using high-precision machining. So I basically work with engineers in manufacturing plants like General Motors, big car companies around the world, and it’s an engineering type capacity, so I have to be sharp. Bill Gasiamis 12:49 I’ve never done this before in a podcast. Like, I’m going to go after you a little bit here. I want to understand, like, what’s behind your condition at the age of 73 right? So you’re an engineer, you’re a smart guy. There’s no doubt about that. You know you need to know certain things. You have that capacity to make your brain, you know, solve problems and work things out. Bill Gasiamis 13:10 What is it about the human condition, or your body, or, you know, the way that you saw yourself that let you get to that stage where you had contributed to being physically unwell, and then in high and then you got mad at yourself. Was that mad? Or was that I’m going to take responsibility now? And if it was, I’m going to take responsibility. Why wasn’t that at the top of your mind beforehand? John Wagner 13:44 To be honest, it’s because I was ignorant. I didn’t know what I didn’t know, and I didn’t want to know what I didn’t know. I just don’t have to, I had no idea a stroke was a brain attack. I didn’t know about thrombosis. I didn’t know about any of these things that I now know a lot of because I listen to presentations every two weeks before I speak to stroke survivors, and it’s very cathartic, but it’s also very it’s an eye opener all these things and a lot of this information I’ve listened to your podcasts are great. Medical Procedures and Small Strokes Recovery John Wagner 14:20 A lot of the information was not available. 2025 years ago, they told me that in the hospital, he said ‘You know, I had three strokes, so then anyway, I’ll go back real quick. After the second stroke, I was in the hospital for about a week. Week and a half I was released, and they said ‘Look, I was really scared. I said ‘Am I a walking time bomb? I’ve had two strokes. What about the third, the fourth? And they said ‘Well, it’s good question, because we’ve addressed the symptoms, but unless you address the problem, you may have another stroke, and it may be the big one. John Wagner 15:01 And I thought ‘Oh, boy, so what do I do? They said ‘Well, we have a procedure called an intracranial angioplasty. And of course, I’m thinking angioplasty in the heart, the big balloon. I said ‘Oh, I know what that is. That’s a piece of cake. She said ‘No, not, not yours, yours is a little fine wire. We’re going to go through your groin, up into your brain. That’s why I said ‘Whoa, when Aren’t there a lot of right and left hand turns from my groin to my brain? She said ‘Yeah, as a matter of fact, there are. But this is a very good procedure. We do it all the time. John Wagner 15:38 It’s got high success once you talk it over with your wife and find out if you want to do it? Because then my brain was doing flips. Bill, I could picture myself in a corner for the rest of my life. I didn’t know. We talked about met with the surgeon. He showed us what the procedure was all about and the percentages for complete recovery. So I agreed to it. So a week later, I went back to the same hospital on the surgeon ended up doing the procedure where they actually put a very small stent in my artery, in my brain to keep it from collapsing anymore. John Wagner 16:17 Well, the procedure went well. It was a regular surgery. And he said ‘No, it went good. We like what we see, you’ve come through the anesthesia. Everything looks good, I think you’re going to be all right. And well, that made me feel much better. So they said we’re going to release you, but quite frankly, we’d like you to take this blood thinner called Plavix. And again, I was totally clueless, and Glenn, my wife, was with me, because nothing was making sense after the stroke, my brain was all over. So I said ‘Okay. So he said ‘We’ve called in the pharmacy, your Medicine is waiting for you pick it up. John Wagner 16:58 So we did on the way home. I got the medicine, I brought it here, I took it one night, I took it the next night, I took it a third night, but the fourth night we went out to dinner or something. I don’t remember, I didn’t take it that night, I had a full blown stroke, in at four in the morning. It’s just completely all the blood platelets agglomerated to the stent because I didn’t take that one night, and I was kind of mad about that. I said ‘You know, couldn’t somebody have told me it’s really damn important that you don’t miss your medicine. John Wagner 17:36 Although they did tell me to take it, but I won’t do that again. So had a third stroke that I was rushed to the hospital close by here. They said ‘Look, we know what the problem is, we’ve called your surgeon to put the stent in. He’s going to meet us at another stroke facility near Chicago in an hour. And sure enough, I raced over there the ambulance, and he performed what’s called a thrombectomy, where they actually go into the same route, up into your brain, but they remove the clot, that is agglomerated onto the stent. And it went real well. John Wagner 18:15 He said ‘Looks, you look good, I’m pretty happy. I said ‘Okay, so that was like three strokes and two brain surgeries. And I thought it was crazy. It was hard to grasp. Bill Gasiamis 18:28 I’ts hard then talk to you here and have you be so with it and no, very few deficits, very few, you know, tell me about what it left. It’s left you with because physically you’re looking great mate, and that’s a good thing. That’s such a good thing, very people come out of it. John Wagner 18:54 That’s why, I want to get older and talk to you. That’s why I speak with survivors. I said ‘Look, this could have been so much worse for me. I couldn’t walk for six weeks. I was admitted into that rehab hospital after they did the thrombectomy, he said ‘Look, we’re going to admit to this hospital and we’re going to do therapy, because I could not move my legs. I was a mess, and I was used to running and and I couldn’t move my legs at all. So I was in there for about a good two, three weeks. I can’t tell the amount of times I fell down. John Wagner 19:28 I had a walker. I’d walk a couple steps, wham, fall down, I get up. I’d do it again and get up again. And now it was getting personal, I was really getting angry at myself for putting myself in this position, and my wife and I know you’ve talked about this, but you and your wife went through and all those runs you made to the hospitals, not knowing if you had a stroke. John Wagner 19:52 We left there, they did such a great job solving the problem, but we were clueless on what to do when we left. When we got home, what do we do? My wife was scared to death. I don’t know what to do, how do I care for a stroke patient, especially one that said three and can’t walk. Bill Gasiamis 20:11 She’s not a nurse, she’s had no training in stroke especially. John Wagner 20:18 And you’ve been a great connection for me, because I’m listening, I was listening to one the other day with Nicholas Schmidlkofer. Bill Gasiamis 20:26 Yeah, he’s great. John Wagner 20:26 He’s terrific. And he’s probably nearby, probably not too far from me. But some of that information I started because of you. I started doing things like taping, and I’m thinking, I don’t sleep with my mouth open. I never have a sore throat. I don’t need to do that. And I thought, I’ll give it a try. So I’ve been doing it for the last couple weeks. John Wagner 20:50 My sleep, which was never really bad, Bill, it’s wonderful. It’s relaxing. I’ll be laying in bed and I’ll open my eyes and my breathing is very easy and effortless, and it does help. So little things like that your podcast mean a lot, I guarantee you. Bill Gasiamis 21:08 Thank you. John Wagner 21:09 I used to listen to music when I’d walk around. Now I listen to the podcast, and the amount of information in there is tremendous. Bill Gasiamis 21:17 So that’s good. So then you had to learn how to walk again. John Wagner 21:24 I had in that rehab hospital once, and after about two and a half three weeks, I was able to walk with a walker, which in my mind, was okay, this is good enough. At least I can walk, and then they finally released me and said ‘We recommend that you go across the street to our outpatient rehab facility. And they explained to me, you’ll be doing physical therapy, occupational therapy, speech therapy. And I said ‘Okay. And I talked to some people, I said ‘How is that? And they go ‘Well, they beat the daylights out here. John Wagner 21:58 It’s hard every day you show up for three hours and you’re you’re going from one thing to another. You say ‘You better commit to it, otherwise you’re not going to make it. So my wife brought me there every day at 8:30 in the morning, and I started out with a walker for about a month. Finally I came in one that’s, I don’t want to use the walker anymore. And they’re like ‘Oh, John, you have to we have insurance issues. We can’t have you falling down. I said ‘I don’t want to use the walker, I’ll use something else. My wife bought me a cane. John Wagner 22:30 They have this new cane called a hurry cane, it’s got three feet on anyway. I started using the cane. I go, okay, I can do this. And then finally, one day, about three weeks later, I came in and I said ‘I don’t want to use the cane, I don’t want to use anything. And they said ‘Well, you have to. So they had me do a lot of tests. I was falling down, but I knew how to get up. And I just thought, I this is not going to work. I have to be able to walk without anything. And they’re fantastic professionals, they really know their stuff, so I spent time doing outpatient therapy for about four months. John Wagner 23:08 And I was finally released, and I still couldn’t drive. They wouldn’t sign off on my driving, which was a big deal, because my wife was doing everything. So they have, they’re tied into the state drivers facility, and they said ‘If you pay X amount of dollars pass these tests, then you’ll go out with a certified driving instructor, and you have to pass that test. They don’t take your license away. John Wagner 23:39 They say, if you’re getting an accident, you could be liable if they know you had a stroke and you didn’t get cleared. So I went through that process, was glad I did, and I was driving again, and everything started to come together. Bill Gasiamis 23:54 But it was that makes complete sense, right? Because that’s negligence, and I’ve never thought about it like that before. John Wagner 24:04 I was told by one of the gals that works at the hospital. She goes ‘My friend’s an attorney, he had a stroke, I guarantee you they will find out that you had a stroke, and if you didn’t get yourself certified, you’ll be liable. And I thought ‘Oh my goodness. So they have these interesting tests, these walls of lights that flash on, and you have, you have to hit them every single one, you have to get 100% and I said to her one time, I said ‘I got 98% I got 98 out of 100 now, pat myself on the back. She said ‘That’s not going to work, John. John Wagner 24:39 I said ‘Why? that one you missed could be a kid on a bike. They kind of put it in perspective. I said ‘You’re right. So I practiced and practiced, and I finally got my license back and started driving again, and that’s when the hard work began, because it’s tough to explain to somebody that’s never been through a stroke. It’s just It’s hell. Bill Gasiamis 25:06 How draining is driving and trying to concentrate and pay attention to all the things that going on, the movement, the light, the sounds. John Wagner 25:16 All of it’s aggravating to me. My brain was in a different place, everything was aggravating, noise, you know, just and I realized, so I started out driving slow, and I’ve kind of continued that, what’s the hurry at my age, what’s the hurry? So I’m driving again. I’ve taken a couple road trips, that was another thing. I used to live at the airport, I was gone two weeks out of every month for 25 years. Once the stroke happened, it was very difficult to maneuver through an airport. I told my wife, I said ‘Not only does nobody know that I had a stroke, nobody cares that I had a stroke. Daily Life and Coping Strategies John Wagner 26:01 So you are when you’re in that mix at an airport, you are just on your own. So I finally started doing some traveling, and it’s worked out pretty well. I’m getting more and more comfortable, but you mentioned any of these side effects that I had for my stroke, only a little bit of weakness on my left side, because the stroke happened on my right side, just a little bit of weakness, which I’m now working on physically with weights and things like that. And I’m walking almost three miles every day. Considering two years ago, I couldn’t stand up, that’s having a lot better place than I thought I’d be. Bill Gasiamis 26:43 Yeah, that’s excellent. So tell me about how much weight you’ve lost. John Wagner 26:50 I’ve lost about 25 pounds. It started right after I got out of the hospital, I was taking medicine, I think was ozempic. It reduced my blood sugar, it works. It just, you just don’t want to eat. So I lost weight pretty quickly, I gained a few pounds back, but I’m still doing pretty well. So I’d say, overall, in the last two years, I’ve lost about 30 pounds, and that makes a difference. John Wagner 27:21 That makes a big difference. Everything is tied to your weight, which I never really I didn’t put that much stock in it, but now I see the big difference. Your knees, everything is all related to that. Health and Lifestyle Changes Bill Gasiamis 27:36 Because you avid listener, and you’re doing all the right things, and you’re behaving yourself, and you really want to get better. I want to recommend a couple of books to you. John Wagner 27:50 I’ve got yours, I like it. Bill Gasiamis 27:52 Thank you. I was going to throw that in, I was going to I was going to throw in a cheeky mention of my book The Unexpected Way That A Stroke Became The Best Thing That Happened. Well, I want to encourage you to read a book that’s called ‘Why We Get Sick. Everyone who’s listening, I want them to go and get a paper copy or an ebook copy. And I will tell you right now, I’m just checking it out. I keep forgetting. I think it’s Dr. Bickman, but I’ll double check Why We Get Sick. Bill Gasiamis 28:34 And it is by, there it is. It is by Ben Bickman, Benjamin Bickman, and it is the best book I’ve ever come across and read. I mean, if I can understand that, anyone can that explains the mechanism that creates illness in the body most of the time, and it’s all related to insulin and high blood sugar. And he talks about all of the reasons why we get sick, and then he talks about all of the things that you can do to overcome that and get better, and then because you’re looking after yourself, and you’re motivated, and you’re looking for new information. Bill Gasiamis 29:23 I may have mentioned in a few of the podcasts that you heard, but if, in case you haven’t heard it, also look at, forget the title, but look at Eat Fat, Get Thin. Now, it’s not a book about weight loss, it’s actually a book that explains the difference between eating what we now call the standard American diet, which is also the Standard Australian diet, and the standard Western diet, and shifting from that stuff that we’ve been sold since the late. The 70s, early 80s, about what supposedly was healthy and what isn’t. Bill Gasiamis 30:04 And it talks about going back to a time where nutrition didn’t involve so many carbohydrates. So another great book that just explains the metabolic side of weight gain and illness and all that kind of stuff. It’s not a book about weight loss, but when I read it, I’m talking about at the very beginning of my journey, probably 2014 somewhere there, it’s written by Dr. Mark Hyman. Bill Gasiamis 30:55 That book changed everything for me, just understanding some of the stuff that was impacting me negatively that I didn’t know was, you know, certain foods again, and as far as they’re just the best books those three. John Wagner 31:14 I appreciate that one recommendation you made. Why We Sleep by Matthew Clark. Bill Gasiamis 31:20 Yeah, it’s such a good book. John Wagner 31:23 It is never thought about it before. Bill Gasiamis 31:25 Yeah, that’s such a good book. Because what that why we sleep book does is, again, it just gives you a total, complete different perspective of what sleep is and how the brain requires it, and how it flushes the brain in the middle of the night during the sleep cycle, and it gets rid of toxins, and the and the cells shrink to create more space for the fluid to get in and wash it out, and then it, you know, and then they expand again as you wake up. I mean, it’s such an amazing. John Wagner 31:57 That’s what little coffer covered in that podcast. It was, yeah, I had to listen to it 15 times. There’s so much information, what’s he talking about here? I mean, he mentioned, what’s the word I’m looking for, when you start getting, when you when you get, it’ll come to me in a second. You get sugar causes it in your, in your bloodstream, Bill Gasiamis 32:32 Insulin? John Wagner 32:35 Pardon? Bill Gasiamis 32:36 Was it insulin, or something? John Wagner 32:39 That insulin, it was a condition caused by not, not swelling, but shame on me. John Wagner 32:48 Inflammation. John Wagner 32:50 I didn’t know what it was. Even after he explained it a couple times on the podcast, I still wasn’t grasping that you can’t be that hard. Let me listen to it again. So your podcasts are covered, they have so much information. You gotta listen to it. Bill Gasiamis 33:05 So Eat Fat, Get Thin. That book is about decreasing inflammation, it’s basically what it’s about, and then why we get sick. Actually talks about the mechanism of of inflammation. It really gives you a deep insight into the inflammatory process. And then once you under understand that, then you know what type two diabetes really is. And then once you really know what type two diabetes is, and you think about how to reduce inflammation in the body, then that’s where, in fact, get thin comes in. Bill Gasiamis 33:37 And then you’ve got all the different pieces of the puzzle, and then you can implement and since you’re an implementer, this is going to be perfect for you. If you’ve already taped up your mouth and doing that stuff, then you’re sleeping better, and that is the beginning of decreasing your negative metabolic rate. Because sleep is one of the most important things to keep people lean and keep their weight off, and people who people don’t realize that when they’re sleeping and snoring and not getting good quality breathing during the night. Bill Gasiamis 34:14 They’re actually creating a metabolic process that keeps them overweight and makes it harder to lose weight, and then when they wake up in the morning makes them crave carbohydrates like breads and cereals and all that kind of stuff, because they are lacking the energy to get the brain going and they are addicted to that cycle that they don’t know they’re addicted to. It’s just what it is, and you’re being controlled by all these other factors. Bill Gasiamis 34:40 And then you’re looking at yourself in the mirror, going, how did I get this big? And why can’t I lose weight? And it’s got nothing to do with the willpower. It’s got to do with the environment is totally against you, and your body is just responding to the environment. John Wagner 34:55 So Eet Fat, Get Thin. So you eat fat and get thin. The Small Strokes Struggle and Sacrifices of Healing Bill Gasiamis 35:02 Love it, yeah, it’s a great book. It’s one of the first books that came out that kind of started to challenge this low fat diet notion. You know, a couple of years after I got sick, I found that, I think it was around 2014 and I tell you what, it was a revelation, because it had nothing to do with stroke. It had to do with being having a healthy body to support recovery from anything, not just stroke, but also from cancer or heart disease or any other condition. It was just fantastic. John Wagner 35:43 I can’t believe what you went through. I felt guilty about all the small little stuff I had to deal with. And I started ‘Oh, my God. I told my wife said this guy thought his skin was crawling, literally, and from that, whatever the name of that medicine. Bill Gasiamis 35:59 Yeah, from Dixon method. Was a tough night. John Wagner 36:02 You had a hard time with your memory a little bit correct. Bill Gasiamis 36:06 Yeah, that was a tough night. I mean, waking up I was hallucinating and just talking to the wall. And then my wife’s wondering, what is this? What is he on about? Like, what is he doing? Who is he talking to? And I just couldn’t respond. And then when I came to one of the other symptoms was that I felt like there was bugs crawling all over my body and it was this steroid, the steroid dexamethasone. Bill Gasiamis 36:33 It was saving my brain. It was keeping the swelling down, but it was making me so unwell in every other way. But, you know, it was temporary, and it was about saving the brain at that time, it wasn’t about the other stuff. And I wasn’t sleeping. Man, I didn’t sleep for two weeks solid I’d be up. John Wagner 36:55 You had a business going, it’s unbelievable, I finally quit. I had been working in this industry for a long time, and I really didn’t have an exit strategy. My son even said to me in the hospital, don’t take this the wrong way, jab, and I’m kind of glad you had that last stroke. I said ‘What? He said ‘You were just going to keep working. He didn’t have any exit strategy at all. And I said ‘Yeah, you’re probably right. I’ve been working since I was 12. Probably that’s all I know, just keep working. Bill Gasiamis 37:24 But was that an issue, though, for you, the working? Was that the issue? Or was out? John Wagner 37:29 No, not at all. It was just, it was something I’d always done. I got used to traveling. I wasn’t really thrilled about but I was gone quite a bit, and raised two sons, two great boys, but I just thought, I’ve had three strokes. I am not going to push this anymore, I finally retired. So that’s enough of that, I’m glad I did. Bill Gasiamis 37:55 You know what’s good about retiring under those circumstances? What’s good about it is that you got time now to actually start making some changes in your lifestyle and in your health and your well being, so that you can have a really good quality of life going forward. Because stroke takes for so many people, it takes the quality of life away, you know, whether they’re in their 20s, 30s or 40s or 70s or 80s, that’s the issue with it. Bill Gasiamis 38:21 So what I like about the fact that you’re not working is that you’re going to have that time now to focus on yourself and get educated and implement strategies that are going to give you a good quality of life and avoid another stroke. John Wagner 38:33 I was having a difficult time reading. I could read the words, but I couldn’t deal with the syntax of a paragraph, I couldn’t put it together. It didn’t make sense. So I said ‘Okay, there’s got to be a logical way to get to get interested again. I got my kindle, I mean, I like to read, so I started reading the backs of cereal boxes, simple stuff. And I said ‘Okay. And then I realized at that time, when I started doing research, my brain was healing. The Neuroplasticity was a big factor, and it was creating new pathways. And I was starting reading became easy, and I told somebody else. John Wagner 39:14 It’s the weirdest thing. It’s like somebody comes into your head and knocks all those books on the floor with all that great information, everything. And you know, the information is there, but you can’t get at it. So I slowly, over time, the last few months, I’ve been reading a lot, and I love it, and it’s easy again. So now, when I read something, I absorb it, whereas before I couldn’t that’s when I said to myself, work has become pretty hard. I don’t know if I want to do this anymore. So I finally retired, and I think it’s worked out pretty well. Bill Gasiamis 39:51 Yeah, hopefully soon, though, there’ll be no cereal boxes in your house after you read Eat Fat, Get Thin. Bill Gasiamis 39:51 Exactly. What was the cereal box doing in your house anyway? We were sold a bill of goods for how many years? My goodness. Bill Gasiamis 39:51 I know, unbelievable, I understand. I have no issue with it like now. It’s just about re directing people and training them again and telling them you gotta stop doing what they’ve been telling you to do, because they’ve been deceiving you. And yes, cereal is the most terrible thing you can eat in the morning or any time of the day, but especially in the morning, it’s the worst food. John Wagner 40:28 I just read the article day before yesterday about the fact that when people get up, they get hungry, they have carbohydrates and sugar, whatever it is, bread, whatever he says ‘That’s the absolute you should be having protein, fats, the opposite, and we weren’t taught that, so, yeah, gotta figure it out. Bill Gasiamis 40:48 A little bit of steak, a little bit of egg, a little bit of bacon, some butter, and that’s it. You’re done, and just you’re set to go for, you know, another three or four hours at least, you know, until lunch time. And that’s the kind of stuff that makes people feel satiated. It changes the cycle from being that whole blood sugar high to a blood sugar low, which deceives the brain to think it doesn’t have energy to access. Bill Gasiamis 41:16 So it makes you crave another meal. So you go and have another meal in the middle of the day between, you know, breakfast and lunch, and you’re forever eating. Humans never forever ate anything. John Wagner 41:29 I’m still trying to figure out how to work in my smoothies. I love smoothies, fruit high in sugar, so I try to watch it, but with spinach or whatever, but I have a blueberry smoothie in the morning. I mean, guy said ‘No, that’s the time to do it. Your body wants fat and protein. Yeah, so I’m going to tell my wife when we’re done. Bill said ‘I have, you have to make me steak and eggs every day. Bill Gasiamis 41:54 Tell her and yeah, that would be fantastic. Well, that’s what I eat in the morning. I at least four eggs, I’ll have some bacon some days or a little bit of meat. And when I’m too lazy, I’ll just have four or five eggs, and I cook it in butter, and I just scramble it up and and then I’m done, and I’m good. John Wagner 42:19 Your appetite too. It really does. Bill Gasiamis 42:21 It fills you up, it just gives you good energy, it helps to wake the brain up. And it doesn’t get you all hyper and stimulated. It just nice and smooth and allows energy to sort of come into you, your body, into your digestive system, and then kind of nice smoothly, just fuel you. So that’s what’s good about that. John Wagner 42:42 Thank goodness. With the diabetes I’ve got some good habits that I didn’t have, portion control, eating, slower, eating, the right thing. So I just watched my A1C and when that drops, I know I’m losing weight, because they go hand in hand. So I’ve made some positive strides there, but I’m still angry that I used to run all the time, and now I don’t run. I mean, I’m still trying to do my my biking. How long I tried? Bill Gasiamis 43:15 Pardon? How long ago were you still running? John Wagner 43:19 About six or seven years ago, quite a while ago? I was always, walking and hiking, but I used to run, because we ran a lot of miles in our program, at this high school program, and college I was involved with were high level competition. We ran all the time. It was nothing to run 12 or 15 miles, and then that would that brought me into this too. I told my wife, I come in after a 10 mile run, I’d say ‘Oh, I’m tired. John Wagner 43:49 But I said, with a stroke, you deal with fatigue, it’s a whole different deal. When you have fatigue, your eyelashes are tired, your toes are tired. She said well, she didn’t understand that, but you gotta go through it to understand it. Bill Gasiamis 44:06 That’s such a great explanation, your eyelashes are tired. John Wagner 44:13 Your earlobes are tired, you’re just overwhelmed. So she’s she’s always and this is, you’ve been a big help. She said ‘You need to take a nap. I said ‘Yeah, I do. She said ‘Just sleep. And I said ‘No, I don’t need to sleep. I just need to lie down. My body needs to my body is telling me you’re either going to lie down or I’m going to fall down. You can make that choice, I get to that point where you’re just so weak, and then I lay down for 20 minutes. I feel fine. Bill Gasiamis 44:40 Yeah, are you cycling, did you say? Overcoming Small Strokes Challenges in Recovery John Wagner 44:44 Just on a Peloton, I want to take my bike out this summer. I got on the bike, went about 100 feet of my driveway, promptly fell over and crashed, I had a helmet on, but I was so disappointed. I used to go out and ride, and now I can’t do that. So balance this winter, I will get myself in biking shape, so that next summer I can be more independent, is the word I’m looking for. Bill Gasiamis 45:16 I’ve got a tip for you about that as well. So have you heard the episodes where I was falling off my bike. John Wagner 45:22 No, what’s the number of that? Bill Gasiamis 45:26 There’s a few. I mentioned it a few times, but ignoring what I just said, but I’ll tell you now anyway, you won’t need to go back to find it. So I used to ride my bike all the time. I had a, what they call a mountain bike, and just nice, comfortable ride. And I never rode on a mountain just along the suburban streets in my area, nice, wide tires, yeah, just comfy, you know. And my left leg after the brain surgery, would fatigue immediately within the first kilometer or two, and then that meant that I would have to shorten my ride or come back, etc. Bill Gasiamis 46:03 And it was not fun, because I couldn’t go out for as long as I wanted, and then when it fatigued, it would fall off the pedal, and it meant that the pedal would scrape on my shin, and then it would make a disaster of my shin, and it was no fun. So what I went and got was a stirrup just for one leg, my left leg. I figured if I put my left leg into the stirrup, then it won’t slip off when I fatigue, and that I’ll be able to get home a bit quicker and easier. Bill Gasiamis 46:38 And that’s one less thing I have to worry about. So I put a stirrup on my left foot, and every time I came to a stop, I couldn’t get my foot out of the stirrup, so it’d fall over. John Wagner 46:53 And then one time, mate, that’s the only way I would ride, cos then you can force your feet a little further, Bill Gasiamis 46:58 Yeah. So it kept falling over, and then that wasn’t solving the problem. That was creating another problem, I had a helmet on also. So anyhow, then I thought ‘Well, how am I going to resolve this? And I heard somebody on another podcast talk about an E bike, a bike with a battery, powered, assisted pedal. John Wagner 47:03 They’re very popular around here now. Bill Gasiamis 47:09 And they are amazing, because the fatigue in my left leg doesn’t happen after two kilometers. In fact, it doesn’t happen at all. And I can ride the 10 or 20 kilometers, and by the time I get back, I’m still in good shape, because the assisted pedaling takes away that initial effort that your foot has to make. And I don’t need a stirrup because it doesn’t fatigue and fall off the pedal anymore. And it’s a such a gentle cardio exercise, and you’re getting out and you’re getting that wind in your hair and all that kind of stuff. Bill Gasiamis 48:02 And then if you get fatigued and really tired, it will help you get back, because you can increase the level of support, you can go from almost none to a lot. So might be something worth considering. If getting on the bike is tiring and fatiguing, then you might want to consider an electric. John Wagner 48:27 We have a Peloton. You familiar with them? Time bike. Sometimes it takes me 10 minutes to get into the to get the pedal hooked up, because our legs are maybe a little bit out of whack. And I thought, this is the little stuff about strokes that nobody talks about that’s aggravating as heck, and it wears on you. So I’m working on that, but it’s a great bike, but I’m going to look into an E bike. That’s a great idea. Bill Gasiamis 48:54 Yeah, have a think about it. It’s those little things, you know, not being able to get your foot into the bike pedal and all that kind of stuff, you realize, like, where the nuance is in the recovery, it’s you’re walking and that looks great, and you’re talking and that looks great, and all these things you’re doing are great. But then there’s this little fine, it’s like the Formula One car, right? It’s like to get that extra second, the amount of resources and research and money that’s going to go into it is just immense, and that’s kind of where you’re at with the foot on the pedal. John Wagner 49:29 My wife used to get really angry with me because I was recovering I was walking, but then I started to get a little aggressive, and I’ve always been a hands on Tool Guy. And I said to her one day, I said ‘I want to mount this, one of these solar lights on our shed. And she said ‘Oh, can’t you have Jack across the street? Do it? I go ‘No, no, I got typical, typical guy, I got this. I got it. I took a job that normally would take me five minutes with. The lamp on in the dark. Took me three hours, I kept falling off the ladder, I kept dropping in the drill, and she finally came out. John Wagner 50:08 And then she wasn’t so happy. And him, would you please call Jack? And I said ‘No, I got this. I’ll do. Took me three hours, but I did, it got real personal up here in my head, but those are the things that just drive you crazy. Who are you going to talk to about it? Nobody, really. Yea, you gotta go through it. Bill Gasiamis 50:27 Falling off a ladder, like properly falling or just not being able to get up properly. John Wagner 50:32 Like a seven foot step ladder, literally falling off completely and and then another, with your wife on this one. I’m not proud of this. We’re we put a we built a pergola on our deck, my metal pergola, and one of the supports came the final one. I said ‘I’m going to put that up. She said ‘Be careful. I said ‘Okay, I climbed up there and I was drilling some holes, and I pushed the drill so hard it pushed me back off the ladder onto the deck, not understanding what a hemorrhagic stroke is. John Wagner 51:07 You know, well, she was outside of our home watching me on our electronic doorbell and the next thing. So I was laying in the deck. It’s almost comical. I was laying on the deck, and my phone was next to me, and my phone started buzzing, and I grabbed the phone, and there were these expletives ‘Would you please, damn it, wait till I get home. I said ‘Okay, alright, fine, so, but I won’t do that anymore. Bill Gasiamis 51:37 You have to know you’ve done so much to get better from whatever you went through, you don’t want to injure yourself, and then have to deal with that as well. John Wagner 51:45 Yes, even a broken home, anything you don’t know. Bill Gasiamis 51:48 No, you want to avoid further injuries. Mate at 73 you definitely want to avoid them and get somebody else to get on the ladder, for sure. John Wagner 51:56 Yeah, that’s true. Bill Gasiamis 51:58 And it’s not whether you can or can’t do it. It’s it’s you. It sounds like you’re not doing it safely, you’re not doing it safely at all. Maybe there’s still some part of your John. John Wagner 52:10 Are you okay? I’d lay in the deck. Yeah, I’m alright, it’s pretty silly. Bill Gasiamis 52:15 I think we might have uncovered one of the areas where your deficits still are. It’s in the safety. It’s in being able to perceive what’s safe and not safe, maybe it’s one of your deficits. John Wagner 52:27 I certainly was. I think I got a little smarter, but it certainly was. I just thought I’m going to do this because I was not used to being restricted. I’m sure anybody that’s had a stroke would feel the same way. There were times I’d be in my closet trying to put a shirt on, and I couldn’t button the button on my shirt. I was almost crying so much effort to do it, and I couldn’t do it, and I just kept trying and trying, and those are little things you don’t read about in the stroke manual. Yeah, they drive you crazy. Bill Gasiamis 53:01 But up until the stroke the first one, did you have a really good run with health? John Wagner 53:08 Well, a couple of years, it’s funny, you’re bringing up all the good stuff, like you were, you were living in our house a year before that. I was asked we were part of a Mayo Clinic Executive Health Plan. My boss kept saying ‘Go up there, it’s free, just go up there. So I went up to Minnesota, and they put you on a rack, and no orifice is safe. They look at everything. And I was getting ready to leave a couple days after, and he said ‘We live in Chicago. I said ‘Yeah, getting ready to leave, and he goes ‘I don’t think so. John Wagner 53:42 I said, why? Well, your stress test shows you got major blockage on your right and left ventricle. So he said ‘The only thing is, you have type two diabetes. Your blood sugar’s high. I would not I would do the surgery tomorrow, except I can’t do it with high blood sugar because of inflammation and all that. So he said ‘If you can lose, if you can bring your blood sugar down in 90 days, I’ll schedule you for a bypass surgery. John Wagner 54:11 And I did, and we did, and up until then, I had never been in the hospital. It was all new. So I had a bypass surgery, and I recovered from that, I did pretty well, and then this came along. Bill Gasiamis 54:25 How does that recovery compare to this current recovery? John Wagner 54:29 Piece of cake, as they say ‘Wow, you know, my ribs were sore for a few couple months, but the strokes a whole different thing. It’s so encompassing, every party being is affected, and this past summer, six months ago, I was standing in our living room talking to my wife in another room, and I just completely lost my balance. Out of the blue, I fell back and crashed onto this fan, this fan of hours, my wife came running. John Wagner 55:01 What happened? I said ‘I wish I knew I just lost my balance. So I’m still dealing with that. Did you have did you have balance issues for a long time? Or I still do. It’s aggravating ‘Yeah, I turn too fast. I have to be careful. Bill Gasiamis 55:18 I shift on my right side and keep going. My left side kind of doesn’t do its job to cause to create balance. It just kind of lets go, and my right side keeps going. So I have to find the wall or steady myself or take a double step. John Wagner 55:38 Hard to explain to somebody I had fallen down so many times it became normal. I thought ‘Well, when I got home from the hospital after my stroke, I told my wife, I said ‘I’m going to need some things, and we got chair for the shower. We safeguarded the our home, but I still, I remember standing by our stairs, you know, a large staircase, and I just lost my balance, crashed down, and I thought ‘What the heck was that, not knowing what was going on. And I thought, is this going to be like this forever? Caregivers and Frustrations John Wagner 56:11 Luckily, not, but it’s very real when it happens. I smacked my head on the floor, and I was a mess so and none of this was funny to my wife, because she had to put take care of me every time, it was rough, and she that’s one of the things I talk about with this group, is the importance of caregivers and their role in helping people that have had strokes, and it’s really critical, how around here, there is no caregiver school. When you leave the hospital with your stroke victim, you’re on your own. Bill Gasiamis 56:54 Wow, so there’s no caregiver school at all for anything, it’s ridiculous. Actually, how old were you when you had the bypass surgery? John Wagner 57:06 I was 69 or 68 it was a couple years before my stroke. Bill Gasiamis 57:13 Yeah, and as a single bypass. John Wagner 57:16 It was double bypass, a double and it really was the best thing to do, because I just have been going to a heart specialist recently. He said ‘Everything looks great. I did an EKG, you’re doing terrific. So it was a good move to have it done. Yeah, and he said ‘You would have, you certainly would have run into problems. Bill Gasiamis 57:40 So when you have so much good health, until what the appearance of good health? Because you’re not healthy a year before your double bypass surgery, you know definitely not right? When you have such good health for, say, 65 years, and you’ve never had a thing to consider or think about then, it makes sense that when you get to, you know, five years down the track and now you’re dealing with stroke, it makes sense that you’re going to feel frustrated by things like, I can’t do up my button because you’ve been able to do it up for 69 years or 70 years. Bill Gasiamis 58:19 And now all of a sudden, it’s not working. It takes a little bit of time to wrap your head around that and come to terms with the fact that something has changed, you’ve been injured. There’s an injury you have to heal from, recover from, whatever the words are, and you are physically changed. You’re different than what you were so and then the identity of but I’ve always done this. Why can’t I do it now? Like that conversation, did that happen in your head? Is that kind of how it goes? John Wagner 58:48 Yes, I’m still dealing with the hassle of the effects of type two diabetes, which I never really gave second thought. Nurse said you’re going to get some kind of neuropathy. I said ‘Oh, well, now I realize it’s really an inconvenience, dropping things and stuff like that. You made a great point, though, on one of your podcasts, and I wanted to bring it up. You basically said, I lost my train of thought. Overcoming Small Strokes Challenges and Exploring Solutions John Wagner 59:19 That’s what happens and that never, when you run into issues like that, you had to do one of two things, either deal with it or just curl up in a shell. I got mad at myself and said ‘No, I’m going to do something about this. I don’t know what I can do, but I’m going to do something. Bill Gasiamis 59:46 So have you heard about Alpha Lipoic Acid? John Wagner 59:51 No. Bill Gasiamis 59:52 Okay, so Alpha Lipoic Acid is something that is meant to help with neuropathy, and it supports. John Wagner 59:59 Can you spell that? Bill Gasiamis 1:00:00 Yeah, Alpha, A, L, P, H, A, dash, L, I, P, O, I, C, Lipoic Acid. John Wagner 1:00:15 I’m interested in that. Bill Gasiamis 1:00:16 It’s a supplement, and it supposed to support, neurons and the extremities and all that kind of stuff. So there’s a lot of research about it. So this stuff I don’t just make up, right? There is a lot of research about it, and studies you can find. So if somebody’s curious about what Alpha Lipoic Acid does. It helps people with neuropathy, settle it down in some cases. And when I’ve Googled it, the first thing that’s come up like it says the benefits of Alpha Lipoic Acid, and it’s just a little tablet, like any other supplement. Bill Gasiamis 1:00:57 It may help lower blood sugar levels. It may help with weight loss and benefits other weight loss medications. It helps the liver, it can help the skin and ALA. May help with pain, burning, itching, tingling and numbness in arms and legs. So whether you have peripheral neuropathy that is caused by type two diabetes or a stroke. It may assist to settle that down and take the edge off it, improve it a little bit. John Wagner 1:01:34 That’s good to know right now. It’s an inconvenience, but it’s certainly not getting better. So I look down the road and try to find out where I’m going to be. I gotta do something, I know what I was going to say to you. I once my brain started getting back, started healing. I could tell it was healing, little things that I couldn’t do before. I would have an issue lifting something or or just grabbing something. And also one day I could do it, and I said ‘My brain’s healing. John Wagner 1:02:03 I could pick up on that, or somebody was saying something to me, and I absorbed it, and I said ‘I wouldn’t have absorbed that two months ago. And I’m just really glad that it your brain will heal, and you just have to appreciate it and realize that this is not a sprint, it’s a marathon, and take a long time. Bill Gasiamis 1:02:28 Are you a glass half full kind of guy normally? John Wagner 1:02:31 Always have been. That’s why I went through depression, never been depressed. I’m not a depressed person, and I couldn’t get off underneath it. It was, it was terrible. And I took it out of my wife a number of times, snapping at her, and she not knowing what the hell was going on. But it just overtakes you. You just, I’d be watching something, and it affects you. I mean, I told her, I said ‘I just laughed all the way through the movie platoon and cried through Caddyshack says something is something not right. John Wagner 1:03:08 So I started doing more and more research. Once my brain started getting back, I could do research, and I some of the things you’ve talked about, gratitude, things like that. They’re actually not just mental your body produces. I know the one of the best podcasts that you had was the ability of the talking about the three brains, the gut brain and the heart brain. And I thought ‘Who would have thought? Gut health. We I’ve always heard gut health is important, but now I’m starting to really think about it. Bill Gasiamis 1:03:46 Taking your gut is your second brain. There’s been books written about that topic, probably since the 90s now, and it has the same type of structure. It, although the shapes are different, microscopically, it has the same type of structure as the brain. It has neurons, it’s where your serotonin is created and generated. You know, dopamine, all those kind of neurotransmitters that you hear about that are important from the for the brain actually occur in the gut, and the brain accesses those reserves and uses them. Bill Gasiamis 1:04:24 They’re not created specifically in the brain. And when the gut is inflamed, your brain is inflamed. It’s just they’re connected, they’re both. Those things are connected, but then also your heart is probably inflamed. So it’s not a single system. The system is all one. John Wagner 1:04:45 Yes, another one, the heart and brain. Bill Gasiamis 1:04:48 And it’s really good, and it’s really important, because the the gut has memory, the gut has a language, so does the heart. The heart has language, you know, emotive language is all heart language. The heart also has neurons, it also has the same kind of brain structures as the brain the lot. It’s all very similar, they’re all very connected. They are, they all speak with each other through the central nervous system and the autonomic nervous system, and you can’t have a healthy brain if you don’t have a healthy gut, it’s impossible. Bill Gasiamis 1:05:25 So people have type two diabetes and inflammation, definitely don’t have a healthy gut. And if you heal the gut, and you make it about just giving your gut the optimum kind of resources and environment to work in, then everything else just comes on board. Later it’s gut is number one, because that’s where all your food goes in, and then once it’s healed, everything else starts healing. Bill Gasiamis 1:05:51 It’s a very simple process, but hard to shift your your thinking from old thinking to new thinking, where you know old thinking was a calorie is a calorie. It doesn’t matter what form it comes in, but it certainly does like a sugar calorie is a completely different calorie to a butter calorie. John Wagner 1:06:13 Any recommendations you may have on gut health, any book that encompasses those three brains, I find that really fascinating. Bill Gasiamis 1:06:21 Well, those two books will help with that, but also the other one is the book by Doctor David Perlmutter: Grain Brain. Doctor David Perlmutter so it sounds like it’s a book about the brain, which it is, but it is about what goes into your gut and how changing again your diet will improve your brain health. So this just so much now, and these weren’t around in so in such numbers, these weren’t around when I first went through this in 2012 they started to proliferate after that. Bill Gasiamis 1:07:10 And it there was this massive shift away from the old traditional, you know, food pyramid, where grains were the most food you ate, and all that kind of stuff, and everything has come along with it. And the guys who wrote this book are neurologists. The people who I’ve mentioned are experts in their field, which meant that they were dealing with people who had what they call type three diabetes, which is Dementia and Alzheimer’s, and then they were having no success supporting people and helping people, and what they found was changing their diet really improved that. Bill Gasiamis 1:07:51 And most recently, okay, I’m going to have the links to all of this stuff that I spoke about today in the show notes. Most recently, and I’ve heard a lot of these types of podcasts from these type people, but I listened to one that’s fresh in my mind, so I’ll mention it now there’s a you might actually enjoy this, because there’s a podcast called The Diary Of A CEO, and The guy’s name is Steven Bartlett, and he is a, I think he’s from the United Kingdom. I think he lived in England, I think. Bill Gasiamis 1:08:30 And he’s a really successful entrepreneur, but he has the most amazing podcast, and his most recent episode, he interviewed a lady called Dr. Georgia Ade, and they were talking about, she’s a psychiatrist, a Harvard trained psychiatrist specializing in nutritional and metabolic psychiatry. So most of the interventions that she does to help people with conditions like well, like bipolar, like schizophrenia, like all these things in involve a massive shift of diet. Bill Gasiamis 1:09:20 What people consume for food, and they talk about the keto diet as being the most beneficial diet to the brain and changing the brain chemistry and supporting a really healthy brain, and therefore positively impacting mood and other things that go along with it, amongst other things, she’s not talking about diet is not the only thing that fixes these things, but what she talks about is the diet is definitely a massive it’s like a massive cog in the wheel that it has a massive positive impact. Bill Gasiamis 1:10:00 In people’s well, being, physical, mental, emotional, the lot, right? And she was just a breath of fresh air to listen to her explain the interventions that she recommends. And she’s a researcher as well, so this stuff doesn’t it’s now being proven. It’s now being shown, scientifically that is helpful, as well as people sharing their stories and saying, I did this, and I did that. I met a guy many, many years ago, probably around 2014 and 15 and 16 when I was on my early recovery journey, who had bipolar for many, many years. Bill Gasiamis 1:10:46 And it was causing havoc in his life, because when he was manic, he would have a whole bunch of things that he did that he shouldn’t have done. And when he was depressed, you know, he would, he would go the other way, and he would really struggle with all the things that he was doing, and he went on a keto diet and told me that his bipolar had settled down so much. And this lady Dr. Georgia Ade. Bill Gasiamis 1:11:16 Talks about that kind of stuff as well how diet has now become a massive intervention into being able to support people that previously psychiatrists couldn’t really help because medication doesn’t really ever, she said, doesn’t really ever solve the problem. It just kind of helps to alleviate symptoms or minimize symptoms or manage symptoms. So what I’m saying here is this is a big spiel on people really needing to pay attention to what they’re consuming and how they’re going about their recovery. John Wagner 1:11:59 That’s so true. You know, you made a good point on one of your podcasts recently about the fact that it’s very cathartic what you’re doing. You’re able to talk with people that are dealing with a lot of the same issues you had. And I feel the same way. I say, I can’t talk to my wife every time I want to talk about something she’s had it. It’s enough, well, there’s gotta be somebody I could talk to about it. That’s why I like to go and speak to these people that are dealing with all these challenges. Bill Gasiamis 1:12:30 I’m the same, and your wife is just like one of those, and my wife too, just like one of those people in the airport that they they can’t see you’ve had a stroke on the outside and that don’t care you’ve had a stroke. John Wagner 1:12:44 That’s it, it’s so true. And another thing is, I tell these people when you come into your house after you’ve been released, you’re the only person in that house that had a stroke. When you’re in the Support Facility, you got all these people around you and all these good vibrations. And then when you come into your house, guess what? It’s you and the four walls. You better figure out how you’re going to deal with it. Bill Gasiamis 1:13:13 And that’s been my journey, there’s nothing better also, in a way of going home and everyone just expecting you to just get on with business, you know. And there’s also a bit of motivation behind this, okay, I’ve gotta pull my socks up, like, I’ve gotta actually be a part of this family. I’ve gotta pull my, you know, pull my weight, get my chores done or whatever, like you have to, and that’s kind of, it’s tough love, but it’s necessary as well. Future Outlook and Goals John Wagner 1:13:45 Well, one other point, I will say, and then I won’t quote you anymore, and that you made a very strong point, and that is when sometimes you’re going through I didn’t. I have a very large family, I have 10 brothers and sisters, so we have a lot of people in our family, extended family. When I came home, I didn’t receive the support I thought I would, and then it finally dawned on money, nobody knows what I went through, they have no clue. So yeah, they’d send me a text or how’s it going, but no specifics. John Wagner 1:14:20 Because we didn’t know anybody that ever had a stroke. So you made a point, and that is, sometimes it’s better that way, then you find a way to pull up your pants and do it, and tough love, you’re right, yeah. Otherwise, you’re waiting for people to do this, waiting for people to do that. I just finally said I’m doing it myself. And he little angry about it, but then you have to get over it. Bill Gasiamis 1:14:50 What was the hardest thing about stroke for you, do you think? John Wagner 1:14:53 Well, physically, I’ll tell you one thing I thought about this the other day. It set me back three years mentally. It zapped my confidence, I used to give speeches in front of engineering groups. I was very glib, I could come up with information, you see, now I sometimes I had to wait a minute go digging for that word, and all of a sudden that was gone. And not that it won’t come back, but your everything changes so quickly, and just a few hours in the hospital, you realize ‘This isn’t the half of it. John Wagner 1:15:33 And I can’t do the things I wanted to do. Then you also made a good point, and that is, maybe if you can’t get back to where you were. Don’t take it so hard, because where you were got you where you are. And I thought that’s brilliant, you have to make changes. Not happy about it, but I I’m doing more than I thought I would two years ago. I couldn’t walk, and I’m walking three miles a day. And to me, that’s progress. Bill Gasiamis 1:16:02 So, that’s good. What’s what has stroke taught you? John Wagner 1:16:10 Well, it’s basically taking care of my body. I mean, my whole package, my whole my ID, everything, mentally, physically, really, at take I took it for granted before, and never had any issues, and was always traveling, going places, and never gave a second thought. And now you realize it’s we’re pretty fragile. So for the next few years that the good Lord has planned, I’m going to try to do my part. You ever come to Chicago? Bill Gasiamis 1:16:47 I’ve never been to Chicago. I have been to New York in 2013 and LA and Hawaii, but never made to Chicago. John Wagner 1:16:55 Some kind of concert or a meeting you have to go to. Bill Gasiamis 1:17:01 Let me know when the next strike conference is in Chicago, and I might come up there, but it has to be warm, John. John Wagner 1:17:10 Yeah, I get that. I get it in the fall months here are just gorgeous. August, September, October, they’re beautiful. But I was just thinking ‘No, I’ve never really wanted to even look and find out about stroke conferences, but now I do more and more research on little things, and before I didn’t, that’s the one thing I would say about a stroke, it’s a double whammy. You’re incapacitated, and the information you really want you can’t get because your brain’s not cooperating, and then the more you get it together, it’s like, okay. John Wagner 1:17:47 That’s when I started listening to your podcast. At first, I was like ‘I don’t want to hear this, I don’t want to hear this well as a commercial. I don’t want to hear that. Now, it’s like, Bring it on, I want to hear everything. And I’m so glad that you took it upon yourself to do it, because aren’t too many people out there doing that. Bill Gasiamis 1:18:07 I was aware of the same issues that I needed information I couldn’t get it, and I couldn’t understand it when I did get it. And then, as things started to improve, things started to settle down, and my rehabilitation started to really take hold, and I noticed the benefits of all the work I was doing. I thought ‘Okay, now that I can, I’m going to do something about it. Reading is not my best tool. I don’t enjoy it, but I enjoy getting information from a book, but it’s really difficult for me to read. Bill Gasiamis 1:18:07 How do you like to get your information? What’s your preferred way? Bill Gasiamis 1:18:43 Podcasts and audio books, definitely, and they’re great. But I have read, I have a bunch of books that I read. If the topic really interests me, then it’s okay, like, I’ll push through and I’ll get it done. So it has to really interest me, and all those topics really interest me. Now you can tell, right? So I’m not lacking the information, and I know where to go to get it. What’s great about creators these days authors is they’re on a bunch of interviews, so you can go and listen to them on YouTube or wherever. Bill Gasiamis 1:19:18 And that’s so if I’m in Chicago, see, I’ve avoided Chicago, you know why? Because I’ve watched too many mob movies. And as far as I’m concerned, Chicago is just a big mob city, and you don’t see anybody other than the mobsters, you know? So I want to avoid them. John Wagner 1:19:41 It’s an awesome city, yeah, but like any other big city, there are areas where you probably still break from, you know, but it’s a great city, and it’s one of the world destinations as far as conferences and things like that. So it’s always very bustly and lot going on, but you gotta steak dinner if you ever make it here if you want. Advice for Stroke Survivors Bill Gasiamis 1:20:08 Yeah, awesome. Thank you. So final question before we wrap up is, what’s a little bit of wisdom you’d like to impart on your fellow stroke survivors who are listening? John Wagner 1:20:23 Be ready for a long, drawn out recovery, it’s just the way it is. I tell people when I’m talking, look, you’re going to have good days and you’re going to have days that are crappy. That’s just the way it is, don’t worry about it. Embrace the wins, is what I say, you’re going to have little wins and little losses. It’s just part of life, and instead of getting mad, just cut fate, move on. So when good things happen, tell your caregiver about it ‘Hey, look what happened to me, so they can see that their work is helping you. John Wagner 1:21:00 And I didn’t realize it was going to be I’m here. I am two years into my recovery, and sometimes I feel like it’s just a few weeks, but you only have one other option, right bill, sit and cry or get up and do it, so that that’s the that’s the best thing I could tell anybody, you’re going to get through it. You’re going to it’s going to take a while, but you will get through it because I did, and I didn’t think I was going to walk anymore. But I don’t like to get too preachy, but I tell these groups, look, I don’t want to tell you so much about what happened to me, blah, blah, blah. John Wagner 1:21:37 I want to tell you what you’re going to find out when you walk out the door, because that information is not out there. I mean, there was no place to go to say ‘Well, I’ve had a couple strokes. Can you tell me what I’m I’m going to find? And you have to kind of figure it out and research it like you’ve done. And hopefully your your wife doesn’t leave you and run off somewhere. Bill Gasiamis 1:22:02 Well, maybe hopefully for her, she does, she might benefit greatly, I don’t know. Well, we would only find out then, but look John, thank you so much for reaching out being on the podcast. I really appreciate it. John Wagner 1:22:20 This is terrific talking to you, and keep those podcasts coming, because they’re really well done, tons of information, and I really appreciate it. If I can never do anything for you across the ocean, just send me an email. And again, I know you get out and about once in a while, but if you ever get near Chicago, I’ve got a gun, don’t you worry, and I know where all the good spots are Bill Gasiamis 1:22:47 Fabulous. John Wagner 1:22:48 Anyway, thank you for your time. I really appreciate it. Bill Gasiamis 1:22:51 That brings us to the end of this inspiring episode with John Wagner, from his remarkable resilience after three strokes, two brain surgeries, to his journey of taking control of his health and living life to the fullest. John’s story is a testament to the strength of the human spirit. If today’s conversation resonated with you, I’d love to hear from you. Please leave a comment, like and subscribe to youtube if you’re listening on Spotify or iTunes, a five star rating or review would be amazing. Bill Gasiamis 1:23:24 It helps others discover the podcast and join our grand community. Remember to check out my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It’s available on Amazon by searching my name, Bill Gasiamis, or at recoveryafterstroke.com/book, and if you’d like to support me or the podcast directly, head to patreon.com/recoveryafterstroke. Thank you for being here, for making this podcast a part of your recovery journey. I’ll see you in the next episode. Intro 1:23:57 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only, and is largely based on the personal experience of Bill Gasiamis. Intro 1:24:27 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Intro 1:24:52 Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content, if you have any. Questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional if you are experiencing a health emergency or think you might be call triple zero if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Intro 1:25:16 Medical information changes constantly. While we aim to provide current quality information in our content. We do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide, however, third party links from our website are followed at your own risk, and we are not responsible for any information you find there. The post How John Wagner Overcame 3 Strokes and Rediscovered Life appeared first on Recovery After Stroke .…

Recovery After Stroke

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From Steroid Abuse to Stroke Survival: Jonathan’s Redemption Story 1:15:44

8 weeks назад1:15:44

1:15:44

The Hidden Dangers of Anabolic Steroid Abuse and Stroke Introduction The pursuit of peak physical fitness can sometimes lead individuals down a dangerous path. While anabolic steroids are often marketed as a shortcut to strength and muscle gain, their misuse can have catastrophic consequences. One of the most serious risks associated with anabolic steroid abuse is stroke—a life-threatening condition that can result in lasting disabilities or even death. This article explores the connection between anabolic steroids and stroke, weaving in Jonathan’s story as a cautionary tale to highlight the severe health risks involved. Understanding Anabolic Steroids and Their Effects Anabolic steroids, also known as anabolic-androgenic steroids (AAS), are synthetic substances designed to mimic the effects of testosterone. They are used medically to treat conditions such as delayed puberty or muscle loss caused by diseases. However, when abused for athletic or cosmetic purposes, these substances can lead to a range of harmful effects, including increased blood pressure, cholesterol imbalances, and heart problems—all of which elevate the risk of stroke. Jonathan’s Story: A Sobering Reality Jonathan, a fitness enthusiast and family man, began using anabolic steroids in his 40s to achieve his ideal physique. Like many others, he was drawn to the promise of quick muscle gains and a chiseled appearance. However, the allure of anabolic steroids masked the silent damage being done to his body. Jonathan’s choice to stay on extended cycles—ignoring the recommended break periods—led to dangerously high blood pressure. Despite experiencing warning signs, Jonathan continued using steroids. Eventually, this led to a hemorrhagic stroke caused by a ruptured blood vessel in his brain. Doctors gave him a grim prognosis: 77% of people with similar strokes do not survive, and the majority of survivors face severe disabilities. Against the odds, Jonathan survived, but the stroke left him with mobility challenges, slurred speech, and a new understanding of the risks he had taken. The Connection Between Steroid Abuse and Stroke Steroid abuse can increase the likelihood of stroke through several mechanisms: Elevated Blood Pressure : Steroids can cause hypertension, which puts excessive strain on blood vessels, increasing the risk of rupture or blockage. Thickened Blood : Steroids can promote the production of red blood cells, leading to thicker blood that is more prone to clotting—a primary cause of ischemic strokes. Cholesterol Imbalances : Steroids often lower HDL (“good” cholesterol) and increase LDL (“bad” cholesterol), contributing to atherosclerosis and narrowing of the arteries. Heart Enlargement : Prolonged steroid use can lead to left ventricular hypertrophy (heart muscle thickening), which disrupts normal blood flow and increases the risk of cardiovascular events. Jonathan’s experience highlights how steroid abuse can turn a seemingly healthy individual into someone grappling with life-threatening conditions. Steroid Abuse Risk Factors Certain behaviors and conditions can exacerbate the risks associated with steroid abuse: Extended Use Without Breaks : Continuous cycles of steroids, as in Jonathan’s case, leave little time for the body to recover. Stacking Substances : Combining multiple types of steroids amplifies their negative effects. Ignoring Warning Signs : Symptoms such as high blood pressure, severe headaches, or vision changes should never be ignored. Pre-Existing Conditions : Those with a history of cardiovascular or neurological issues are at even greater risk when abusing steroids. Lessons from Jonathan’s Recovery Jonathan’s journey post-stroke has been one of resilience, learning, and transformation. With the support of his wife and family, he has embraced a healthier, drug-free lifestyle and has become an advocate for raising awareness about the dangers of steroid abuse. His story serves as a powerful reminder that while fitness goals are important, they should never come at the cost of your health or future. A Final Thought The risks of anabolic steroid abuse extend far beyond the gym. The pressure to achieve a certain physical ideal can lead to decisions with irreversible consequences. Stroke is a devastating outcome that no amount of muscle gain can justify. For those considering steroids, Jonathan’s story is a sobering example of the potential dangers. Always prioritize long-term health over short-term results. Cited Resources American Stroke Association: stroke.org National Institute on Drug Abuse: drugabuse.gov Stroke Foundation (Australia): strokefoundation.org.au Steroid Abuse and Stroke: Jonathan’s Inspiring Road to Recovery Jonathan’s story of overcoming a stroke caused by steroid abuse inspires hope, resilience, and recovery insights for stroke survivors everywhere. Instagram Support The Recovery After Stroke Podcast Through Patreon Highlights: 00:00 Jonathan and Brittany’s Introduction and Initial Situation 04:10 Hospital Experience and Initial Diagnosis 18:46 Family Strength: Brittany’s Support and Jonathan’s Journey 20:40 The Cause of the Stroke: Anabolic Steroids 31:08 Fluffy but Loved: A 16-Year Journey of Humor and Affection 40:25 Healing, Hope, and Progress: A Journey After Stroke 49:24 Shifting Focus: From Gym Junkie to Mentor and Role Model 1:00:39 The Stroke’s Impact: Jonathan’s Transformation and Future Vision 1:02:39 Advice and Insights for Stroke Survivors and Caregivers 1:08:41 Final Thoughts and Encouragement Transcript: Introduction – Steroid Abuse and Stroke Bill Gasiamis 0:00 Welcome everyone. I’m so glad you’re here, whether this is your first time tuning in, or you’ve been with me for a while, your support means the world. By sharing the podcast, leaving reviews or just listening week after week, you’re helping to create a thriving community for stroke survivors and caregivers, a space where we can all feel seen, heard and supported. Since 2015 I’ve been dedicated to bringing you free, valuable resources through this podcast, and your support makes it possible. Bill Gasiamis 0:33 If you found value in these episodes, I’d love for you to consider supporting the show on Patreon, at patreon.com/recoveryafterstroke . Your contribution helps keep this podcast alive and accessible for stroke survivors around the world. I’d also like to take a moment to remind you about my book ‘The unexpected way that a stroke became the best thing that happened’. It has been a guide and a source of hope for many stroke survivors and their loved ones, offering practical insights and inspiration for navigating recovery. Bill Gasiamis 1:08 If you haven’t checked it out yet, you can find it on Amazon or at recoveryafterstroke.com/book . So what did we speak about in today’s episode? Well, Jonathan and Brittany joined me to share their extraordinary journey of resilience, recovery and transformation after Jonathan survived a hemorrhagic stroke caused by anabolic steroid overuse. Jonathan opens up about the day his life changed forever, from the subtle signs Brittany noticed to his grim diagnosis at the hospital. Bill Gasiamis 1:45 We explore the impact of anabolic steroids on his health and how they led to dangerously high blood pressure and the devastating brain bleed that followed. Jonathan also reflects on his emotional recovery battling anxiety and depression and the lessons he learned about prioritizing health over esthetics. Brittany offers powerful insights into her role as caregiver, from navigating the challenges of supporting Jonathan through recovery to balancing the needs of their six children. Bill Gasiamis 2:20 Together, they share how humor, family, support and resilience help them find light in the darkest moments. This conversation also dives into Jonathan’s mission to raise awareness about the dangers of steroid overuse and inspire others to make healthier choices if you’re a stroke survivor, caregiver or someone interested in the intersection of fitness and health, this episode will leave you inspired and motivated. Let’s dive in. Bill Gasiamis 2:51 Jonathan and Brittany, welcome to the podcast. Jonathan 2:55 Thank you. Glad to be here. Bill Gasiamis 2:58 Take two guys, we tried this last week, didn’t work. I’m glad to have you back here today. Jonathan, let’s start with you. Tell me a little bit about what happened to you. Jonathan 3:09 Yeah, man, so what happened to me? It was August, 20, 2024 about roughly 15, almost 16 weeks ago, I got up about 4am like I normally do. I normally get up, have some coffee, scroll through my phone, then I crawl back into bed with my wife, Brittany. We snuggle until about 5am and then she gets up and normally gets in the shower. I typically head to the gym. That’s our morning routine every day of the week. Jonathan 3:41 This particular morning, she went to the bathroom before she got in the shower, she looked in the bedroom and saw that I had not gotten up yet. So she kind of come over to me and said, “Hey, you’re not going to the gym? Hey.” And I started mumbling, really funny, really weird. And I tried to get up, but I couldn’t quite get up, so she helped me up, but I was stumbling. Really couldn’t walk, didn’t have any balance. She knew something was wrong. Hospital Experience and Initial Diagnosis Jonathan 4:10 Right then she took me in the living room, sat me down, she got the kids ready, got them off to school, and I still was acting funny, still couldn’t walk, so she rushed me to the ER. After getting to the ER, the doctor there immediately said, I think he’s having a stroke. I need to do a CAT scan. So they scan my brain. He immediately came out and told Brittany, it’s not looking good. He looks like his brain is bleeding pretty bad. We’re going to have to transport him up an hour north to this Chattanooga CHI Memorial Hospital. Jonathan 4:47 That’s where they have a good neurological team, and they can try to save his life. So they transported me up there. From there, I don’t remember anything. I really don’t remember anything of that morning. They transported me up to CHI Hospital in Chattanooga. For three full days I was unconscious. On the fourth day, I regained consciousness, but barely. But the doctor was in the hospital room, and he told me that I was a miracle. 77% of people with the left thalamus brain bleed like I had -I’d lost so much blood- die, they basically pass away. Jonathan 5:33 The other 23% are severely disabled. I’m lucky that I’m alive, and I’m going to have a tough road to recovery. At that time, he was telling me that I could not walk. I had no movement or function out of my right arm. My face was fine. I looked normal in my face. I just was very tired, unconscious. My speech was slurring still, and I could not walk, and I could not really use my right arm. And that’s when my wife came up to get me now, and we went home. Jonathan 6:07 They tried to get me to stay at the hospital for recovery, but the hospital being an hour away and us having six children in school, I couldn’t stay up there, and she wouldn’t be able to stay with me. So we decided. I have a gym here at home, and I decided to do recovery and therapy on my own here at home. So that’s kind of the story of the stroke happened and how we got here. Bill Gasiamis 6:33 Brittany, in the morning at 5 o’clock. It’s pretty normal for somebody not to want to get out of bed. What was it for you that made you go back and check up on him and make sure he was okay? Because nobody I know wants to get out of bed at five in the morning. Brittany 6:52 Well, he has, like, a military routine, so him not being at the gym is like, it don’t happen. Yeah, I just knew, like, was wrong, you know. And then he started mumbling. I’m like, you know, it was very weird, and you don’t think, ‘Oh, well, he’s having a stroke. It’s not like ‘Oh, bless. Brittany 7:20 I mean, the right side of my face is paralyzed or anything like that, like you, you know, you kind of have a little knowledge on people who have strokes. And it wasn’t just like all one right side is like you couldn’t walk at all, and it’s just so I didn’t know what to think. To be honest with you. Bill Gasiamis 7:39 Same reward seemed more dramatic than something that you could kind of let him take a rest about. Brittany 7:47 Yeah, no, something’s definitely wrong. I mean, he rarely even get sick. Jonathan 7:56 What was so devastating was when the doctor told her that she needs to get prepared for the worst, because most people don’t come out of this. That was the most devastating part, because upon getting to the ER, she just thought I was having an allergic reaction or something. She had no clue that it was a stroke, more or less a brain bleed so bad. Bill Gasiamis 8:25 What’s it like, Brittany? Like you’ve never heard that before said about your husband, these doctors, are they being are they giving you any hope? Are they saying there’s a, like, a small chance anything? Or they’re just telling you worst case scenario? Brittany 8:42 I guess it was more just like worst case scenario, the hot like I said, the hospital here is not equipped at all, so they’re just by telling you when things like ‘Oh well, we got to hurry and transport them as quickly as possible. Not getting to talk to the doctor right away in the Ted Nuza Hospital, and then finally, talking to him, he’s like ‘Well, there’s so much pressure on the brain. And you know, it’s one of those things where they can’t just say ‘Oh yeah, he’ll be fine, or anything like that. Because he’s so bad. Bill Gasiamis 9:21 They really don’t know, time they’re hoping for the best. Brittany 9:28 Yeah, they’re pretty much. You just have to monitor them and, you know, do another CT scan and then do an MRI and see if there’s, like if the bleeding has stopped. But we can’t do that for such and such amount of hours, and so it’s like, you just have to wait and live in fear and pray, and you know. Bill Gasiamis 9:51 What about the children at that time? How do you tell them what’s happening? What did you go through there? Let’s take a quick pause. Here to reflect on Jonathan and Brittany’s remarkable story so far, their journey shows the resilience it takes to face life after a stroke, the power of family support and the courage to overcome immense challenges. If this podcast has brought value to your recovery or inspired you in any way, I’d love your support on Patreon, at patreon.com/recoveryafterstroke . Bill Gasiamis 10:25 Becoming a Patreon not only helps sustain the podcast, but also allows you to be a part of a community dedicated to growth and healing. If you’re looking for additional resources, remember to check out my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It has been described as super helpful, and one reader said bill comes off so positive, his book and podcast will leave you hooked, whether you’re just starting your recovery or further along. Bill Gasiamis 10:55 The book is available on Amazon and at recoveryafterstroke.com/book . Now let’s get back to Jonathan and Brittany’s story and hear more about how they’re navigating recovery with strength and determination. Brittany 11:11 Well, when they came home from school, I told my boys that I didn’t really explain to them the whole stroke thing, because I felt like they would not quite get it. I just had to, kind of like he’s in the hospital, you know, and just lightly say everything’s going to be okay. I can’t just go and tell them ‘Well, I don’t know what’s going to happen, you know. Brittany 11:38 And then I told my girls, since they’re older, what had happened, and trying to explain to them to see if they were even knowledgeable at you know, to some circumstance they they’ve heard, you know what a stroke is, but not knowing the details of we don’t know what’s going to happen. Jonathan 11:57 And again, we have six kids. We have our three girls are oldest, but one’s almost 15, one’s 13 and one’s 11. Our boys, we have twin boys, they’re 9 years old, and we have a little boy who’s six. Bill Gasiamis 12:11 And the 15 year old’s very capable of, kind of taking over the family for a small amount of time getting the kids organized and getting it right. ‘Okay, that’s really good. So then you’re in hospital, and this is all surreal to me, because this short amount of time for you to be on the podcast since your injury, and you’re scared and all that kind of stuff is unheard of. And to be speaking to me the way that you’re speaking to me in the capacity that you have, is really fabulous. Bill Gasiamis 12:51 Let me just make sure that what I’m trying to do is like, express how profoundly joyful it is to see somebody who’s been through what you’ve been through to be on my podcast already and in your condition. So tell me about first it’s we’re at that stage of so much pressure. We don’t know what it’s going to have, what’s going to happen. We don’t know if he’s going to get through it, and then how many days to get to the other side where. Actually, I think he’s going to be okay. How many days did it take to get to there? Jonathan 13:26 It was, I think on day four, I just all of a sudden woke up. I hadn’t been conscious the whole time, but on day four I woke up. The doctor happened to be in my room. He was the only one there and a nurse, and he looked at me and said, ‘Welcome back, son. He’s the older gentleman, and he looked at me and said ‘You’re a miracle, because we weren’t sure if we were going to get you back. He and that’s when he told me the statistics, 77% of people pass away. Jonathan 13:58 The other 23% normally either never walk again, or they’re severely disabled. And at the time, that scared me, but I was able to talk a little bit. I was able to understand, but still really fuzzy. But he told me, he said ‘The bleeding is stopped, the pressure is going down, we’re going to keep you here for a couple of weeks for rehab. And that’s when I called my wife. She came up there, and we basically told him ‘We can’t stay I’ll go home and do rehab. Just need the rest and and that’s when we went home, and being home the story is even more amazing. Bill Gasiamis 14:41 We’ll talk about that in a minute. But what deficits were you left with? What did you have to deal with to recover from? Jonathan 14:49 I couldn’t really walk, I had to use a wheelchair first. My legs just would not really move. Now I could stand up, but they were weak taking steps, really hard. My right arm really didn’t have any strength, I could move it, but it didn’t have any strength, any grip strength. My left arm seemed like nothing had happened, and then, of course, my eyesight was a little messed up. Things were blurry, I felt lightheaded, and my speech was really, really slurred. Bill Gasiamis 15:20 Okay, and you discharged yourself from hospital because it was too far, and you came home with all of those conditions. Jonathan 15:29 Yes, sir. Bill Gasiamis 15:31 Brittany, what was it like having that guy, this version of your guy back home? Brittany 15:39 It definitely was different. But, I mean, we made it through, you know, I told him, granted, I had to keep reminding him, like every five minutes, because he would forget stuff and I’d have to repeat it. That is going to be alright, I’m going to take care of you no matter what. I pushed him around the wheelchair until he moved to the walker, I helped him with everything. Jonathan 16:02 Bill, I don’t want to make a joke of this, but this, we had some hilarious times too. I don’t know if you’ve ever seen that movie, 51st dates. It’s with Drew Barrymore. Well, in that movie, there’s a guy that had a traumatic brain injury, and every 10 seconds he would lose his memory and forget. And so I would walk around and say ‘Hi, I’m Tom, and then seconds later, I’d say ‘Hi, I’m Tom. So we had a little fun with it too. Bill Gasiamis 16:34 Sounds like you had some fun with it. Brittany would have been thinking ‘Oh my gosh, has he actually forgotten who he is? Does he think is Tom, yeah, I know that movie. It’s good to observe and sort of to turn things into, to kind of create a little a little bit of light laughter about the situation, because it’s pretty serious. And if you’re going to be serious the whole time, I mean, it’s going to be really stressful. I know there’s some stroke survivors who don’t believe there’s anything funny about stroke, but man. Bill Gasiamis 17:06 I reckon there’s tons of stuff funny about stroke. I had some moments where I was in the most sort of serious state before my surgery in 2014 and my I was in the hospital getting preparation, getting prepared for surgery, and they do all the pre tests and all that kind of stuff. And my blade had settled down just enough so that I could get to surgery. They checked us out, and then when we were doing that, when I was doing that final examination, and they sent me home. Bill Gasiamis 17:41 It was probably about three hours worth of tests or different tests to know what they’re dealing with for surgery. When they sent me home, I started having a dizzy spell, and I started noticing all this weird stuff happening, like I was out of my out of my head, out of my brain. I don’t know what it was. It was like, really surreal kind of experience, and we go and admit, I go back from I leave the area where I was getting all the tests done, different part of the hospital, and I go to emergency. Bill Gasiamis 18:12 And I say I was here for tests for surgery in a week, blah, blah, blah, and now I’m having an episode. I think this thing might be bleeding again, because it bled three times, and I’m not feeling well. And they initially said ‘Okay, well, you look all right, can you go and sit down on the chair, just in emergency with your wife, and then we’ll get somebody out to come and help you. I said ‘Fine. I went and sat down, and then there was this kid sitting next to me. He must have been on the autistic spectrum or something, right? Family Strength: Brittany’s Support and Steroid Abuse and Stroke Journey Bill Gasiamis 18:46 And he was sitting next to me, and I was holding onto the the armrests of the chair, and he was too. And every once in a while, he kind of rubbed his hand on my hand, not accidentally, kind of thing, you know, we just touched hands. And then a little while later, I heard his mom say something to the tune of ‘You were in the toilet, yeah. And he goes ‘Yes. And then she said to him ‘Did you wash your hands? And in that moment, all of my stroke symptoms went away, and the only thing I could think of was I have got to get up and go and wash my hands. Bill Gasiamis 19:27 And I said to my wife ‘You need to sit here, wait for me. I’m going to go to the toilet and wash my hands. And all the drug symptoms, all the stuff that I was experiencing, all the blurriness just vanished, immediately vanished. I went to the toilet, I washed my hands, and I came and sat down, and then I just kept my hands on my lap, so we wouldn’t interact in that way with this young kid again. So I feel like, if you look for it, there are moments where you can make light of the situation. Bill Gasiamis 20:01 Because I think it’s really helpful. So now the this stroke story is going to take a little bit of a turn, because we know what happened to you, we know how you got home, we know what you’re like now. But why did this happen? That’s the big question here, because it’s a very different why to why most other people have strokes. So you hear about strokes, that’s that about 80, depending on who you hear it from 80 to 90% of strokes are preventable, and that is a really staggering number. Anabolic Steroid Abuse and Stroke Bill Gasiamis 20:40 This means that of the millions of people who have strokes, most of the strokes are unnecessary. It’s lifestyle factors that causes it right? And you hear about the regular lifestyle factors, smoking, drinking excessively, being overweight, not checking blood pressure, diabetes, you name it. We’ve heard them all. We know the ones that they are, but your situation was different. So tell me about what caused your stroke. Jonathan 21:10 Well, really quickly. I want to give it some context. It started when I was younger. I was with chubby, you know, little fat kid. I grew up with body dysmorphia if you know what that is. And so as I got older, right around 40 years old, I had a friend that lived in Arizona, and he turned me on to steroids. So I started doing steroids about six or seven years ago, I started off with mild steroids like testosterone and some SARM selective androgen receptor modules, very mild stuff and they did good building muscle. Jonathan 21:55 But they didn’t give me that lean, cut up look that I wanted. I wanted to be super muscular, I wanted to look like Superman. So the past like three years, I started trying harder steroids than multiple stories and stacking stories. They call it stacking when you use multiple compounds. Testosterone has but I started using things like wind straw that helps dry you up, make you look dry and cut, I started using things like trend alone, which builds muscle, builds strength, but also makes you look extremely muscular. Jonathan 22:28 Every piece of food you put in you, I don’t care if it’s a donut, it’s going to your muscle cells, it’s making you muscular. The thing about these steroids are you still gotta put in the work, you still gotta lift the weights, you just heal. And it happens a lot faster when you gotta you still gotta eat enough protein and work out. So what I had done is I made the big mistake of I did a cycle about a year ago, a little over a year ago, of trembolone and Anabar and wind straw with the testosterone, and I never came off. Jonathan 23:03 You’re supposed to cycle it 12 weeks and then take 12 weeks off. If I would have done that, I probably would have been okay. But this time I cycled on and never came off. I started to look so good, so muscular, so cut up that I just couldn’t imagine coming off of it in my body. Because when you do come off, you do fluff up. I call it fluff up a little bit, gain a little bit of body fat, but you don’t, you don’t lose a lot. But I didn’t want that anymore. I stayed on it, and that’s what led to my blood pressure shooting up sky high. Jonathan 23:39 I ignored it, and it kept shooting up just two or three weeks before this happened. Bill, he had me in the ER because my blood pressure was too high, and they gave me medicine. Got my blood pressure down. I went on home, and I still injected the steroids the next day. And so I asked for this, it was my fault. But yeah, the steroids took me out, it caused that artery to rupture in my vein due to high blood pressure. Bill Gasiamis 24:08 Yeah, okay, so, Brittany, what’s it like experiencing that, knowing that this was preventable, that it should never have happened, and then watching it happen. Now, I understand that there’s some other stuff going on. This relationship is, you know, full of many different experiences and things and wife issues and husband issues and kid issues. Like, I totally get that, and I don’t want to cause, create any kind of conversation that is uncomfortable for you guys. Bill Gasiamis 24:42 But I am curious, since on the podcast, you’re all willingly here, what’s it like being the wife of a person who has body dysmorphia? Let’s acknowledge that, and then B also takes this path to try and improve his physique I suppose. Brittany 25:04 I don’t know, I have a little bit of body dysmorphia, but I would never touch anything. But it’s I would say that I was definitely not knowledgeable about steroids. I’ve never researched anything, looked anything into anything. It’s not something that like, you know, you hear some people take steroids and they’re just mean, it was nothing like that. So I’m like ‘Well, you know, but having high blood pressure and ignoring it. Jonathan 25:38 The real, only side effect I got from the steroids were high blood pressure. I never got mean, I never got angry, I never got violent, destructive. It didn’t do those things to me, like you hear sometimes. It made me pretty normal. Now, it did raise my libidos through the roof, which, you know, that’s one of the side effects, and it generally made me pretty calm. It wasn’t bad like that. Bill Gasiamis 26:07 When it raises the libido, you don’t necessarily see that as a negative either. Jonathan 26:13 No, but it well, it can be negative like, yeah, trim alone raises your libido to where you can’t stop thinking about it. So 10, 15, times a minute, yeah. Bill Gasiamis 26:30 Okay, so impacts the way you think, not only the way your body. Jonathan 26:34 Oh yes. Bill Gasiamis 26:34 But also the way you think about it. Jonathan 26:38 Yep, absolutely. Bill Gasiamis 26:40 Okay, and that was really interesting. What Brittany said, like, you didn’t know much about steroids, and he and the only thing we generally hear about is, you know, they’ve got roid rage. We hear that every so often, and that’s about the only thing I know about steroids. And you didn’t see any real major changes, and you thought ‘Well, seems to be going, okay, friends, getting the result. Yeah, just kidding. Jonathan 27:11 I was result-driven. I got the results. Quickly she saw that, she saw how happy it made me. And I didn’t let her know all the dangers. I just told her ‘Hey, this is something I’m taking. Don’t worry about it, it’ll be okay. And then, you know, I just kept on going. Bill Gasiamis 27:32 And when you look back now, did it actually make you happy, or was it not real happiness? It was just like a smoke screen of what you thought happiness, where you thought happiness came from. Jonathan 27:46 That’s right, it was more like a smoke screen. It was something I’d wanted my whole life, so I’d started to obtain it. And so that did make me happy, but it was more of a smoke screen because I knew that once I stopped taking it, I was going to lose some of what I gained. Bill Gasiamis 28:03 That’s the hook, that’s the whole thing. How often were you training? Jonathan 28:11 Every day, six, sometimes seven days a week? Bill Gasiamis 28:14 Hence, why? How many? Jonathan 28:21 Sometimes multiple hours a day. Bill Gasiamis 28:25 How much are you eating? Jonathan 28:28 Man, probably anywhere from 8,000 to 10,000 calories a day when I was in my bulking phase to put on size, but I cut it back to about 3000 when I was trying to lean up and cut up. Bill Gasiamis 28:42 And the bulking time is that part of that cycle where you are trying to put muscle on so that the muscle gets a larger. And then the cutting time is it time where you’re going and doing any kind of shows, or is it just summer? When is it? When do you kind of go into the cutting phase? Jonathan 29:09 So bulking is just like you said, you’re trying to put on more muscle mass, but when you put on muscle mass, you have to eat a lot more. So you are going to get a little bit fluffy, put on a little bit of body fat. The cutting phase is more trying to get that dry look, lose all the water you’re retaining, lose all the body fat you’re retaining. Just kind of look like a Greek god. You just you’re chiseled everywhere. Bill Gasiamis 29:33 Yeah, that’s such a fake thing. That’s such a temporary time, isn’t it? To be like that. How long can you sustain looking like that? Jonathan 29:46 Well, if you’re taking the drugs, you can sustain for good if you’re on them, but if you’re off, you’ll lose most of that muscle mass, and you’ll definitely start to lose that dry look, probably within a month. Bill Gasiamis 30:02 So when you’re looking great, you’re looking in the mirror, you’re loving it when you’re bulking up. Are you okay with the way that you look when you’re bulking up, or are you totally hating it? Jonathan 30:14 I’m okay with it, not totally happy with it, but okay, because I know that I’m I’m gonna put on size that I’m gonna rip up, and I’m gonna look bigger and more cut. Now, one of the other things that you get is a lot of strength. You’re talking about average guy, five foot eight, I weigh 185 pounds. Now, when I’m doing those steroids, I’m benching 500 pounds. I can’t do that now. I’m not on anything now, so I can’t do that now. Bill Gasiamis 30:46 So what about wear and tear joints, on your joints and all that, because of the steroids, are they healing quicker? There isn’t so much wear and tear. What happens there? Jonathan 30:55 When you’re on the steroids, you don’t feel any pain. It’s like it’s not there, non existent. But now that I’m off of steroids, I have shoulder pain. I have joint pain. Yeah, it’s pretty common. Fluffy but Loved: A 16-Year Journey of Humor and Affection Bill Gasiamis 31:06 So, Brittany, you’re with a guy who for whatever reason, we’ll try and see if we can unpack the reason in a little bit, for whatever reason, looks after his body and looks great. Have you ever seen him in the time that you’ve known him, the time that he’s been a dad and all that kind of stuff, to not look great, to think ‘Oh, this guy doesn’t look good. Brittany 31:36 I think he’s always looked great. Jonathan 31:39 But pretty fluffy so. Bill Gasiamis 31:43 Compared to who like in your eyes or like in. Jonathan 31:50 Well, you know, yes, in her eyes too. She knew I was chubby, so we’ve been together 16 years. I’d say the first eight to 10 years. I was a little fluffy, I was a little overweight and but she still love me. Bill Gasiamis 32:06 That’s what I’m getting at, right? Didn’t seem to be an issue, but for you, was it always an underlying issue? Jonathan 32:15 Yes, yes. Bill Gasiamis 32:17 Okay, Friday, so I’m just trying to get the psychology of the whole thing. You know, the thing that makes you make a decision, it’s like a drug. It becomes, it is a drug, I know steroids are. But we’re talking about the drug of the look, not the steroid, per se, the look and how you want to perceive yourself or other people to perceive is it about other people, how they perceive you, or is it about you? Jonathan 32:45 All I want other people to look at me and say ‘Wow, look at that guy. And I also want to think of that myself. But like I said, all this comes from body dysmorphia and there’s a long history of it. In my life, I was raised up with no father, my mother was a heroin addict. My mother died of a heroin overdose when I was 14. I found her dead. Jonathan 33:09 My entire life, I never had anybody telling me they love me. No parents to raise me. I had a deep, deep and dark childhood, and so that helped create the body dysmorphia I needed people to love me. I needed them to love what they saw that would help me love what I saw. And that was the reason for the body dysmorphia. Bill Gasiamis 33:32 Brittany, is this the same guy that you knew just a few weeks ago talking this wisdom, literally a few weeks ago, was it? Yeah, that kind of stuff from coming then, yeah, he’s changed heaps. It sounds like the old you wasn’t considering any of these things. It sounds like you’ve changed heaps in that time. Is that right, Brittany? Bill Gasiamis 34:09 That’s a great turnaround. I mean, I’m trying to emphasize that for the purpose of how quickly things can change, how quickly your mind can kind of fall into line and give you, give you information and wisdom that you didn’t have before. So how are you how do you see yourself different? How have you sort of noticed that transition? Jonathan 34:30 Well, one thing is doing the steroids. Most of what I gained from doing the steroids has not gone away. I’m still in good shape, just not as muscular, not as strong, but the perspective I’ve gained is I’m almost 50 years old. I got a loving wife. I’ve been with her for so long, and I have six children with her, and they’re all, I’m all they got, and I have to provide for them and take care of them. Jonathan 35:01 And the thought of not being here and them struggling without me scares me, and so I’ve made it a mission of mine to stay healthy, to eat right, to not do any nicotine, not I’ve even cut back where I don’t even drink caffeinated coffee. I drink decaf. I’m gonna change this. I feel like this is the second half of my life, and now’s the time to do it right. Bill Gasiamis 35:26 Yeah, you know, with all the dramas of your life, being a young kid of 14, discovering what you discovered, being without your Dad, did you have any support during that time from any other extended family, from counseling services. Did you go? Did you have any support whatsoever? Jonathan 35:47 No, my mother sent me to counseling services to get medication that I was supposed to take for issues I had as a child. But the medication was not for me. My mother would take them and sell them and then shoot them up, you know, do dope with them. So I didn’t really have a support system. Bill Gasiamis 36:09 So has it been what’s life like been after you became an adult? Have you been able to transition into work properly at the beginning of this sort of after you’re 18 and all that kind of stuff. How did you kind of move out of that teenage phase where you’re meant to be unruly, crazy, not listening to anyone, when you have your parents around, but you had to do without your parents. So what was that transition like for you into adulthood? Jonathan 36:40 I’ll let you know a little secret. I don’t tell many people, but since we’re here, I’ll tell you, it took it was a hard road at 17 years old, when my mother died, I found out that somebody shot her up with too much dope and robbed her. Well, I ran into that person when I was 17 years old and almost killed him. I went to prison for 10 years. I didn’t get out till I was 26 years old, and that’s when I made the transition I was I told myself ‘I’m too young for this, I can’t be a criminal. Jonathan 37:16 I don’t want to go down the same path my mother went down. And I changed my, I turned my life around. Started studying information technology, studying computers, and then I got my first job, doing help desk, and I worked my way up to now. I work for a software company, and I’m a senior director of digital transformation now. So it was a long, hard road. I had to start from the bottom, but everything about me was about ‘Hey, I’m not supposed to be here. I’m going to prove them I am supposed to be here. Jonathan 37:51 And I met my wife early in that journey, and she supported everything I did. We had to move, we moved from Virginia to California to New York to Texas to Florida twice. I mean, we’ve moved around a lot, and she’s been pregnant most of that time, but she still supported me, because I could not stay in the environment that I grew up in. I had to get away and start over new. Bill Gasiamis 38:20 Yeah. Now that is intense, you to be commended. It sounds like though your dramatic moments in your life are really important for you to turn the next page and create this next chapter. You know different version of yourself, and you seem to really learn from your mistakes, based on what you’ve already described about what happened to you only a few months ago and also many years ago. Bill Gasiamis 38:55 So Brittany, from your perspective, where are things at now? What other things that you need to pay attention to and support for, like, what’s left with regards to the stroke that needs to needs the continued support. Brittany 39:16 Just life. Jonathan 39:19 Yeah, one, a couple of you know, I make a joke of the stroke and the recovery, but early on, it’s been almost 16 weeks. So when I say early on, it was more like I was four weeks after the stroke, I started to experience a lot of anxiety and a lot of depression came with it too, and I’ve never had anxiety or depression ever in my life, really, that I can remember. But all of a sudden I start worrying about everything, what I’m eating, am I going to have another stroke? Jonathan 39:52 You know, so much worry, and that turned to depression. Some days I’d wake up and I feel like there’s the in total despair, like, what is there left to live for? And this beautiful woman right here pulled me out of it every single time she made sure that I knew ‘Hey, you’re loved, you can’t go anywhere, you’re going to be okay. And that was the most important thing I needed. Then I don’t have any real anxiety anymore depression, but that was one of the toughest things I experienced since recovering from the strength. Healing, Hope, and Progress: A Journey After Steroid Abuse and Stroke Bill Gasiamis 40:25 So, I am honestly, like, I’m in a bit of situation where I’ve never been before. Things seem to have progressed really well, very short amount of time where, what are the doctors saying about this blood vessel now, about the bleed, about your blood pressure. Where is all of that? Jonathan 40:46 Well, from what the doctor said, they did more CAT scans. They’ve done more checks since the stroke, and they said ‘Everything looks good. There’s no blockages, there’s no plaque buildup because I’ve been paying a lot of attention to cholesterol, and I’ve gotten scanned from head to toe, just looking, are there any plaque filled up, anything narrow blood vessels and nothing, everything looks good. So everything within my brain looks good, everything through my body. Jonathan 41:14 The blood pressure was running really high at first. It’s now stabilized, not because of lifestyle. I’m eating right, drinking right, doing all the right things. It was mainly because I was anxious. I had a lot of anxiety, and so that was shooting my blood pressure up. Now I’m on blood pressure medicine, but it’s stabilized. Now I’m not I don’t have as much anxiety or anything like that. So right now, I feel like I’m as healthy as I’ve ever been. Brittany 41:42 And that lesson, and God came with more recovery. It’s like ‘Oh, today I wake up and I feel clear. And, you know, my sight is good, the lights aren’t bothering me. It’s like that progress and like ‘Oh, I am getting better. I’m not going to have another stroke. And, you know, and then it’s like, and she’s there to reassure getting better and better every day. Bill Gasiamis 42:08 So as the as things improve, as the risk perhaps decreases, as everything starts to stabilize, then the mind can be eased, and then with a little bit of support and a little bit of encouragement, then those thoughts can go away. Then that makes sense that anxiety is kind of around when you’re unwell. Completely makes sense that it’s part of that illness. And many stroke survivors comment about exactly the same thing will happen on the stroke. Bill Gasiamis 42:40 And kind of put themselves in a situation where they’re overthinking all the things which is very normal and and that’s good. That means that you’re able to be around for your family and for your wife and for everybody that needs you and loves you, and where, where are you at with the body dysmorphia, part of the whole journey? How do you think about that? Jonathan 43:07 Now, I honestly do not even think about it. The thing is, Bill, I started going back to the gym, and I have a gym at home, and now I’ve gotten my weight back up to around 185 I’m still about 20-25, pounds lighter. But as I look in the mirror and I’m lifting weights, the same veins still pop out, the same muscle, and I’m like ‘Wow, I still got it. I don’t need body muscle. I look good, and I’m no drugs, no stimulants, no anything. I’m just going to do it all natural. Bill Gasiamis 43:42 That’s it perfectly, that’s good, that keeps you healthy, that keeps your muscle mass, that keeps you strong, that does all the amazing things that being physically active always. Did you know? Jonathan 43:54 Did you know what else? I want to talk to people. I’ve decided that I want to get out there and start to speak, to tell people what happened to me, the dangers of using steroids, the dangers of using some of these supplements, let them know my story and what I went through, and hopefully help somebody else one day. Bill Gasiamis 44:19 I think that’s really important, lot of stroke survivors do that. They want to reach out and make sure people know about the risks of whatever it was that they were doing that caused their preventable stroke. For example, I’ve interviewed a couple of guys who’ve had damage to their carotid artery as a result, I think it was the karate artery as a result of jiu jitsu choking. So they’re in Ju-Jitsu, they’re training, you know, they’re practicing, and they’re competing. Bill Gasiamis 44:51 So in the compete, in the competitions, either the opponent is trying to choke them out, because it’s a quick way to get a tap out. So, in training, they’re practicing choking people out. I mean, I can’t think of anything more stupid, to be honest, than practicing to choke people out. Now, the couple of guys that I interviewed had some damage to the back of their necks. And as a result of that, they had a stroke. Bill Gasiamis 45:23 And as a result of that, you know, they went through a lot of the dramas that we’ve always already spoken about on this podcast episode and many others before this. And they wanted to reach out and make sure that they told people of the dangers of Ju-Jitsu, that part of it specifically where there’s a lot of blunt force trauma, there’s impact to the arteries, and people don’t realize how sensitive they are, and what they were experiencing was dissections. Bill Gasiamis 45:52 So the inside of the artery was just tearing off a little bit, and it was creating a little flap. Now there’s nothing wrong with the artery. It’s not going to break and bleed or anything like that further. But that little tear inside that creates the flap inside the blood vessel changes the blood flow and causes clots. That was that’s the only thing it does. Sometimes it heals by itself, it goes back and it goes back to position. Other times it needs to be clipped. But the guys reach out. We need to tell people about this thing. Bill Gasiamis 46:22 Because nobody talks about the injuries that are associated to the brain after Ju-Jitsu. So that’s common, and I really like the fact that you reached out for that reason and also prepared to tell me about things that a lot of people wouldn’t be prepared to tell somebody on a podcast that goes worldwide, you know, now, with regards to the steroids, are there any withdrawal symptoms? Do you notice anything other than how much you can lift, etc? Do you notice the body kind of needing to reset? Jonathan 46:59 The body kinda reset it. First, my strength went down really low. I wasn’t sure if it was due to the stroke or was it just because I came off the steroids, but my strength went really low, so I’ve had to reset and build that back up. Now it’s come comes back pretty quick, it’s called muscle memory. It came back pretty quick. I’m still not as strong, I probably will never be as strong as I used to be, because I’m going to be clean now. Jonathan 47:26 But there is a part two, coming off steroids that’s mental as well before, prior to the stroke and I was on the heavy steroids every day and working out every day, and my wife can attest to this. I lived and breathed body building. I lived and breathed lifting weights. I looked in the mirror constantly. It’s all I thought about, it’s all I did. And man, you know that part of my life’s gone now. It’s different. Jonathan 47:57 So there wasn’t a tad bit of depression at first, not doing that anymore, not having anything like my goal was to be super strong, super big, super muscular. Now that’s not my goal anymore. So I had to refine myself. I had to find new goals, new hopes, new things to do with my time and because sitting around just makes you depressed. Jonathan 48:21 So now I’ve put my focus into let’s go out and help other people. You know, I can stay in shape going to the gym. I’m almost 50 years old, I don’t need to be big and, you know, bodybuilder anymore. Let’s go out and help people. Bill Gasiamis 48:39 Yeah, would you say there’s a little bit of OCD in that level of trying to build weight obsessive compulsive disorder? Is it? Because it seems like it’s an OCD kind of pursuit in that, oh my gosh, you know that that muscle is not popping the way it needs to the one that no one else has ever seen. Brittany, it was, was he? Look at my back. Tell me what it looks like all the time. Brittany 49:11 Yes, take a picture of my back. Let me see I’m like, it looks good. Jonathan 49:17 Yeah, even when it looked good, I could find issues with it. So, yeah, it’s definitely OCD a part of it. Shifting Focus: From Gym Junkie to Mentor and Role Model Bill Gasiamis 49:24 So that I and then the transition I can imagine is very different. You were focusing on nothing but your body the gym. You were a gym junkie, basically, yeah, and what are you focusing on now? Where are your thoughts now? Who are they on now? Jonathan 49:42 Well, I work in technology. I’m focusing now on growing my knowledge in technology, again, because it’s a never ending learning thing you have to do in technology. I’m focusing on helping my company. I’m at a director level. I can be a President, Vice President, one day I have the wits about me, and now I’m focusing my time on I want to help people. I want to put the news the message. Not only want to do I want to help people that are thinking about or doing steroids, the dangers. Jonathan 50:17 I want to help people, coaching them, mentoring them in real life. There are a lot of kids out here that have went through what I went through, not having parents, having a deceased parent, living on the streets, being poverty stricken. Well, I come from all of that. I’ve seen nothing but violence, drugs, sexual abuse, things like that as a kid. And there’s gotta be kids out there that I can reach and help get through that. Jonathan 50:41 There’s adults that’s that are hooked on drugs, that are they’re doing having substance abuse issues that need somebody like me to to mentor them and coach them along. And that’s where I really my passions there. I want to help these people. Bill Gasiamis 50:57 Seems like you’re a good guy, generally speaking, and I haven’t known you for much so, like, it just seems that way. So I’m gonna, I’m very comfortable saying it. Brittany seems like an amazing, supportive person as well. 6 kids, it says a lot about you guys. I can’t, I could barely deal with 2 kids when I was a dad. So to land 6. So my hat goes off to you guys for that. That’s an amazing accomplishment. And one of the things that I’m very conscious of is this the example that I’m setting for my kids. Bill Gasiamis 51:33 Because they’re boys. They were teenagers when I was going through my illness, like the real serious part of it. And I kind of felt like, how do I want the example to be about how I’m going to go through the recovery? And, you know, because I could go through it really badly, I could be really annoying and terrible and make it all about me, and, you know, not take other people into consideration. And of course, when I had a stroke, it’s not just me that has it. Bill Gasiamis 52:06 Everyone goes through it, the whole family, extended family, etc, when you were going to the gym and doing the weights, if your kids had come to you and said ‘Hey, I’m going to go to the gym and start shooting up steroids. Would that have been okay with you? Would you have? Brittany 52:26 No. Bill Gasiamis 52:27 No, Brittany immediately. I didn’t even finish the sentence, and Jonathan, though as well. But that’s the thing about it is, is that the dysmorphia part of it sort of stops you from seeing that thing that you wouldn’t let your kids do. That’s not okay for them, it was still okay for you. Jonathan 52:47 Yeah. I mean, I knew the dangers of steroids, but I kept doing them because of my own issues. Now, for my children, they did. They went to the gym with me, they worked out with me, they always asked to go with me and I took them, but there was never any speaking of steroid use or supplement using. They’d see me make my morning shake, but that’s about it. Bill Gasiamis 53:10 Yeah, and did they learn later that this is the reason why I ended up in hospital? Have they learned that yet? Jonathan 53:18 No, they don’t know anything about steroids, and I’m going to try to keep it from them as long as I can, when one day when they can understand, I’ll let them know, but that is a long time from now, I just let them know I had a stroke, and I’m still training and still working hard. Now I get excited about my milestones, and when I make accomplishments, I’ll let them know about that. And my little boys, 9 years old, they come up to me and say ‘Ain’t no stroke going to keep you down. So that’s great, that’s a feel good moment. Bill Gasiamis 53:50 Yeah, what happens if they stumble on this podcast interview? And for some reason, your teenage kids, which they probably never will, but decide to actually listen to it and go, beginning to end. Jonathan 54:04 Well, my girls, are the only ones as teenagers now, and I’ll let them know really quick that do steroids if you want, you’ll be looking like a guy. Bill Gasiamis 54:16 No, I’m not talking about that. I’m talking about if they come across this interview and hear what their dad did. Jonathan 54:24 Yeah, to be honest with you, they’d probably be a little upset with me that I put myself in that kind of danger. But you know, we’re a tight family, like I said, it’s me and her and the kids, that’s all we got. We have no other family, and we’re tight knit, so they realize that ‘Hey, we might make mistakes, but we’re going to move forward. We’re going to move forward. Bill Gasiamis 54:51 Yeah, everyone makes mistakes. The thing about mistakes sometimes is, you know, they end real bad, there was no intention to, right. And that’s the thing about steroids, I know there’s a lot of stories about people who have really made themselves unwell or not made it through some kind of a medical complication as a result of of that. Bill Gasiamis 55:17 And it’s such a good thing to have you here to share that story, to learn your lesson, to look at new ways to I say, I suppose, give energy to that part of you that needs to give energy some it sounds like you’ve got an excessive amount of energy. If you just focus on the wrong thing, it might go there. But if you focus on the right thing and it goes there, then amazing things can happen, like have already happened, right? Bill Gasiamis 55:44 Some of those amazing things include your wife, your family, your kids, clearly, a lot of that energy at the right time was put in the direction of something amazing, and that proof is in the pudding, the outcome is great. And then that you stray off a little bit, and you don’t realize that you’ve strayed off, and you’ve just gone down that little direction that you thought that’s not a big deal. Bill Gasiamis 56:07 You’re going to start down there. But you know that, you know taking a one degree shift off course at the beginning of the journey doesn’t seem so bad, but 10 years down the track, that one degree you know has gone so far off course, you’ve got no idea how you even got there. Jonathan 56:24 Yeah, Bill, I’m one of those people. My personality is, if I’m going to do it, I’m all in. So if I’m going to do something, I’m all in and passionate about it. So I was that way about steroids at one time. Now that I know that I will never do it again. The opposite. I’m completely passionate about not doing it, making sure that I stay clean and do it naturally. Bill Gasiamis 56:51 I like the sound of that, and that probably ends up becoming passionate about advocacy, about being against steroids and not doing steroids and training naturally, because you can influence a lot of people going into that potential path before they get there, or even if they’ve just entered, you could potentially help get them out. Bill Gasiamis 57:15 Because, you know, the underlying reason that it’s happening for a lot of people, it could be body dysmorphia. Do you think that’s a big thing in the gym? Is Body Dysmorphia a huge thing in the gym that people aren’t speaking about? Jonathan 57:29 Yes, I think it’s huge. I think a lot of people have body dysmorphia. They don’t talk about it. But here, in the past 10 years or so, the epide, I call it an epidemic of steroid use, because you got kids now, 16, 1718, that young doing steroids, not because they’re fat, not because they’re underweight or don’t have the potential. Actually at that age, they had the highest potential. Their testosterone levels are so high at that age, that they could build that muscle without drugs. But they want it all, and they want it now. Jonathan 58:07 And there is an epidemic going on of using, I call it peds, performance enhancing drugs. And they’re using everything out here now, everything, and it’s given them a lot of danger. Not only that, I have a stroke and have those health complications from using steroids, it also made my heart thick, the lining of my heart thick. I had heart problems at first, and I had to take medication to get my heart back right at a normal level, and they said that it would be congestive heart failure if I didn’t stop. Jonathan 58:46 And they said they’re glad I stopped. They give me medication now my heart is strengthened back and came back, and it’s doing well now. But steroids not only have dangers with blood pressure and brain and arteries, you have serious, serious complications with your heart. Brittany 59:04 And you really don’t know what you’re injecting into yourself, who you’re getting it from. You can’t trust people, companies. You could be just injecting poison into yourself. Yep, very true. Bill Gasiamis 59:18 Yeah. And these kids, if they’re starting off that young, they’re interfering with their reproduction. They must be interfering with all sorts of things. Jonathan 59:29 Yes, by doing testosterone. And see when you’re doing steroids, testosterone is always the base. You have to have a test, because most of the steroids, the regular ones, it’s the pressure testosterone. So when you start doing testosterone, guess what it does? It cuts off your ability to make your own natural testosterone. So no more babies can’t make babies anymore. You’re shooting, they call it shooting blanks, and you can’t make and then even if you come off of the testosterone, it is extreme. Jonathan 1:00:00 Only difficult to ever produce your on your own anymore. So you might not ever be able to have kids. You might shut your testosterone forever. And if you take too much testosterone, it can have an adverse effect. It can cause gynomasia, which is guys form breast tissue and also it can make you retain a lot of water, which can drive your blood pressure up. It can do a lot of things. So steroids are just they have a lot of complications, and most of these kids out here now are taking them and don’t even know what they’re doing to themselves. The Stroke’s Impact: Jonathan’s Transformation and Future Vision Bill Gasiamis 1:00:39 Yeah, yeah. Well, man, I’m glad you reached out and Tom your story, I’ll be happy to share it and let people know the risks and then, and then, I hope that, hopefully that becomes that sort of foundation for you to take this to the next level and spread the message more in whatever way that you choose to do. So, as we’re coming to the end of the episode, I want to ask you three questions that I ask stroke survivors. Bill Gasiamis 1:01:11 Brittany can answer these as well, because I’ll ask them, and she can answer from the perspective of a caregiver. But for you, first, Jonathan, what’s the hardest thing about stroke so far? Jonathan 1:01:28 So far, the hardest thing has been the depression and the anxiety and wondering, What am I going to do next? Am I going to survive this? Is it going to happen again? Bill Gasiamis 1:01:44 Yeah. And Brittany, what about you? What has been the hardest thing for you to go through while your husband was unwell? Brittany 1:01:53 I would say just the unknown at first and then having to like, suppress my own anxiety, till I do the things to help his anxiety and depression. Bill Gasiamis 1:02:09 So you got to kind of put yourself on pause for right now, stay in the holding pattern, get him over the line, and then get back to yourself, I imagine, at some stage, and sort of start supporting yourself again? Yeah, so this is a big question for you, Jonathan, because it seems like you’ve already spoken about these things, but what have you learned about your stroke or not about your stroke? What has stroke taught you? Advice and Insights for Stroke Survivors and Caregivers Jonathan 1:02:39 Yeah, it’s taught me one why I had the stroke, and why did I do those things to begin with, I was a normal, healthy, male, beautiful family wanted to do those things. So it’s taught me to look for other ways to, I don’t know, do things with my time, to care more about myself, put my family above myself, you know, my body dysmorphia. And I’ve learned a lot of scientific information on what a stroke was, how it happens, the different kinds and ways to keep myself healthier, what to prevent. And that’s one of the key things I’ve learned. Bill Gasiamis 1:03:22 What has this time taught you? Brittany. Brittany 1:03:32 Having more empathy for you just never know what somebody’s going through. I mean, you really don’t. You can look totally normal and it can be going through a worse situation. You just never know. Bill Gasiamis 1:03:49 And that’s a interesting thing about people who have strokes with deficits that aren’t visible. For example, if their hand is not injured, or the leg is not injured, if they’re walking, they have what they call invisible deficits, right? And it’s me and my left side hurts and it feels different. My balance is, you know, but you see me in the street, you wouldn’t have a clue. And it’s really hard trying to convince somebody you’re having a really bad day when you look great as like. Bill Gasiamis 1:04:19 The words don’t match the appearance, and it’s like, oh my god, this is so hard, so hard to to convince anybody of anything. But I appreciate what you’re saying. So this is also an interesting question. You could probably talk on this for an hour, which you already have, but I’m going to ask it again anyway, there are other stroke survivors and other people that are listening to this podcast, and they’re trying to get a tip or some advice or some wisdom or whatever they’re trying to gain from it. Right? Bill Gasiamis 1:04:57 What do you? Jonathan? Want to tell the. Stroke Survivors about their journey, and perhaps some other people who may be listening because they’re they’re in the gym, and they found out about you, and now they’re listening to this podcast. What’s the message for the stroke survivors, and what’s the message for people who are not structure wise. Jonathan 1:05:23 Really four different words, resiliency, perseverance, strength and family. You gotta be resilient. You can’t stop. You gotta go. You gotta grind. You gotta keep working as hard as you can and not stop. It’s all about repetition and staying staying with it, and keep working hard, perseverance, knowing in your heart that you’re going to persevere and make it through this. You’re going to do whatever it takes, and you’re going to get through it strength. Jonathan 1:05:55 The strength to get up every day, to face the world with your limitations, with your injuries, anything that’s going on, knowing that you can do it and you’re going to make it passive and being strong. Don’t lay down for anybody. Just keep moving forward. And then family. Look for your family. Look for the people that love you the most, to support you. Stay around them. Jonathan 1:06:17 They’re going to help you get through the rough moments, the anxiety, the depression, things like that. I had my family. This is the only family I’ve got. And if it weren’t for her, I don’t know if I could have made it through so family is so important. That’s what I would tell each and every survivor out there before. Bill Gasiamis 1:06:34 I ask Brittany. Something came up while you were saying that, that’s awesome. What you’ve said those four words, um, was steroids, a short route to something that you could have done that was harder to do. Do you know how you kind of mentioned you put the hard work in, etc. Were you trying to take a short path to that, or were you also doing the hard work and then trying to just take another path? What was that like? Jonathan 1:07:05 Well, again, doing steroids, it helps you get there quicker, but you still gotta put in the hard work. You still gotta lift heavy and all these things, but yes, definitely trying to get there quicker. I didn’t start till I was 40 plus years old, and I was like, Well, I’m behind as it is, so let me get a little help to move ahead faster. Bill Gasiamis 1:07:26 Okay, so that was part of the motivator, okay, yeah. And Brittany, from a caregivers perspective, a wife’s perspective, what, I don’t know, what, what? What would you like to kind of leave for people to consider after what you’ve been through. Brittany 1:07:50 Never give up. There’s always a better day ahead. Don’t, yeah, don’t take the hard road. Don’t take the quick and easy thing. Jonathan 1:08:03 As a caregiver. What would you tell other caregivers? Yeah, how should they be? How should they treat the situation? Because bill a lot of a lot, a lot of times, I see people in stroke groups where their caregiver laughs at them or makes fun of them or doesn’t quite the invisible injuries like you were talking about. They don’t quite see them, so they’re like, Oh, you’re not in pain. Get up. You look fine. Well, you know, you gotta have somebody really understanding and loving to help you through those times. Brittany 1:08:32 Well, that’s just sad, because I don’t know who would say those things to their loved ones or even a stranger, but, yeah. Steroid Abuse and Stroke: Final Thoughts and Encouragement Bill Gasiamis 1:08:41 Ignorant people often not willingly ignorant, just people like I was before true, just ignorant of other people’s experiences, because I was too wrapped up in my own experience. And then I spent some time in a wheelchair, and I realized, oh, people in a wheelchair aren’t just sitting down. There’s a lot more going on. And yeah, I had no idea. And then when I found myself in one and had all the limitations of somebody who’s in a wheelchair, it was like, oh, man, I was an idiot. I had no idea what I was doing. Bill Gasiamis 1:09:19 So that’s, that’s that’s the kind of people that do it, people that are just don’t know any better. It’s great that you’re more aware and you’re more empathetic. It’s probably a female thing as well. Can females tend to be a little more empathetic? I feel at least that’s my experience from the research that I’ve done with all the dumb mates and blokes that I know, but it’s been lovely to chat to you guys. Thank you so much for reaching out and sharing the story. I really appreciate it. Bill Gasiamis 1:09:50 I wish you well in your health, your recovery and Brittany. I wish you some time so that you can start looking after the things that you need to you. Get back onto looking after so you guys can be healthy and well for your children, because there’s no point everybody. There’s still. One of the things that I try to sort of impart on a family who’s going through this is, you know, sometimes the relatives and the family, they kind of all suffer their own version of deterioration or breakdown after a caregiver. Bill Gasiamis 1:10:28 Because they’re a caregiver after their loved one has a stroke, we can’t have 356, people in the family sick at the same time. Let’s look after ourselves so that we can be able to be well, to support that person who’s going through that, but also to not make things even more complicated and even harder. As you know, that’s kind of how I see it. Bill Gasiamis 1:10:53 Caregivers forget to take care of themselves. They put everything that’s about self care on hold, and then they just put it all into other people. And that’s I wish for you. You’re probably already doing it, but I wish for you that you have some time for yourself. Brittany 1:11:10 We’re equal. We kind of, we take care of each other regardless. Jonathan 1:11:16 Yeah, even with my stroke, I’m, I’m always looking after her, making sure she’s okay. Because, you know, I’ve been the sole provider for this family for a long time, and I’ve been the protector the persons there, and even when I was in a wheelchair. I mean, hard to give that up. When you provide them, you take care of your family. I don’t care if I’m in a wheelchair, I’m gonna do something. Bill Gasiamis 1:11:39 Yeah. I get it. I really appreciate you both. Thank you so much for being on the podcast. Yep, thank you, Bill. That brings us to the end of this episode with Jonathan and Brittany. Jonathan’s journey of recovery after a stroke and Brittany’s unwavering support as his wife and caregiver remind us of the power of resilience, love and determination in the face of life altering challenges. If today’s conversation resonated with you, I’d love to hear from you. Bill Gasiamis 1:12:12 Please Like, Comment and Subscribe on YouTube, and if you’re listening on Spotify or iTunes, a five star rating or review would mean so much. It helps others discover the podcast and join our supportive community. Remember to check out my book The unexpected way that a stroke became the best thing that happened. Some readers have called it a must read and shared how it has helped them stay positive through their recovery. It’s available on Amazon or at recoveryafterstroke.com/book . Bill Gasiamis 1:12:53 And if you’d like to support the podcast directly, Visit patreon.com/recoveryafterstroke. Thank you for being here and making this podcast a part of your recovery journey. I’ll see you in the next episode. Intro 1:13:11 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog podcast or video material controlled this website, or content, is created and produced for informational purposes only, and is largely based on the personal experience of Bill Gasiamis. Intro 1:13:28 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. 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However, third party links from our website are followed at your own risk, and we are not responsible for any information you find there. The post From Steroid Abuse to Stroke Survival: Jonathan’s Redemption Story appeared first on Recovery After Stroke .…

Recovery After Stroke

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Brooke Parsons: Transforming Stroke Recovery Through Resilience and Advocacy 1:41:24

9 weeks назад1:41:24

1:41:24

Introduction Brooke Parsons is more than a stroke survivor—she is a beacon of hope and resilience for the global stroke survivor community. Experiencing a major stroke at just 13 years old, Brooke’s journey over the past 30+ years has transformed her into an advocate, educator, and leader in stroke recovery. As a Stroke Foundation Ambassador and a lived experience consultant, Brooke has dedicated her life to reshaping stroke rehabilitation and advocating for better outcomes for all survivors. A Stroke at 13: Brooke’s Life-Changing Experience At the tender age of 13, Brooke’s life changed in an instant when she suffered a major stroke. The impact was profound—her parents found her unresponsive, unable to walk, talk, or care for herself. Despite the initial misdiagnosis of a migraine, Brooke’s family persisted in seeking answers, eventually leading to a diagnosis of a significant stroke affecting a large portion of her brain. Her recovery journey was arduous and complex, involving six weeks in a hospital, learning to navigate life with new physical and emotional challenges. Yet, Brooke’s story is not one of defeat but of perseverance and triumph. Deficits and Strengths: Living with the Effects of Stroke Brooke lives with long-term deficits, including mobility challenges requiring a wheelchair, occasional speech difficulties, and fatigue. Despite these hurdles, she has embraced her “new Brooke” identity—a version of herself that she describes as fierce, stubborn, and resilient. Brooke’s ability to adapt and find purpose has been instrumental in not only her recovery but in inspiring others. Advocacy and Leadership: Brooke’s Role in Stroke Research As a Stroke Foundation Ambassador and a lived experience consultant, Brooke has become a vital voice in the stroke survivor community. She has been involved in numerous groundbreaking research projects, including the AVERT trial, which explored early rehabilitation interventions. Brooke’s input ensures that stroke survivors’ perspectives are considered in the development of treatments, hospital practices, and support systems. Her advocacy extends to co-designing projects like the Young Stroke Service, which addresses the unique needs of younger stroke survivors, such as returning to work, maintaining social connections, and navigating life milestones after a stroke. The Importance of Community and Peer Support Brooke emphasizes the power of community in recovery. By sharing her story and mentoring others, she creates a ripple effect of empowerment among stroke survivors. Whether speaking at conferences, collaborating with researchers, or supporting fellow survivors, Brooke embodies the importance of connection and shared understanding in overcoming life’s challenges. Philosophy of Resilience: “Drop the T” One of Brooke’s most inspiring messages to stroke survivors is her philosophy of resilience: “Drop the T.” Instead of saying “I can’t,” Brooke encourages survivors to say “I can.” This mindset shift has empowered her to tackle challenges head-on, whether it’s participating in daring activities like the CN Tower Edge Walk in Toronto or representing stroke survivors on an international stage. Brooke’s Vision for the Future Brooke is committed to ensuring that stroke survivors are not just heard but valued in shaping the future of stroke care. She advocates for meaningful involvement of survivors in research, grant applications, and policy-making, emphasizing that lived experience is as crucial as clinical expertise. A Legacy of Advocacy and Support As Brooke looks ahead, she remains dedicated to mentoring the next generation of stroke survivors, researchers, and advocates. Her focus on succession planning ensures that her impactful work will continue to benefit the stroke community for years to come. Conclusion Brooke Parsons is a shining example of what it means to turn adversity into opportunity. Her journey from a 13-year-old stroke survivor to a global advocate and consultant is a testament to the power of resilience, community, and purpose. Through her work, Brooke is not only shaping the future of stroke recovery but also inspiring countless others to believe that life after stroke can be meaningful, fulfilling, and extraordinary. Call to Action: If you’re a stroke survivor or caregiver seeking inspiration, support, or community, follow Brooke Parsons’s journey and learn how you too can turn challenges into opportunities. Connect with the Stroke Foundation or explore the resources available to help you on your path to recovery. Brooke Parsons: Inspiring Stroke Recovery Through Advocacy and Resilience Brooke Parsons, a stroke survivor inspires with her journey of recovery and advocacy, showing how resilience can shape life after a stroke. Highlights: 00:00 Introduction – Brooke Parsons 03:51 Brooke’s Early Life and Stroke Experience 12:11 Impact of Stroke on Brooke’s Life and Family 20:26 Challenges and Adaptations Post-Stroke 29:29 Inspired by Mentorship 38:04 Celebrating Milestones and Navigating Fatigue 47:42 Understanding and Addressing Oversights 57:16 Empowering Stroke Survivors 1:08:47 Shaping the Future 1:18:27 From Survivor to Mentor: Evolving Journey Post-Stroke 1:24:02 Embracing Change: The Transformation After Stroke 1:30:52 From ‘I Can’t’ to ‘I Can 1:34:34 Resilience and Advocacy Transcript: Introduction – Brooke Parsons Bill Gasiamis 0:00 Welcome everyone before we dive into today’s extraordinary conversation, I want to thank you for being part of this incredible community. Your support, whether it’s sharing the podcast, leaving reviews or simply tuning in, makes a huge difference. Together, we’re creating a space where stroke survivors and caregivers feel seen, heard and inspired. Since 2015 I’ve been personally covering all the costs of producing the recovery after stroke podcast to ensure stroke survivors and their loved ones have access to free valuable resources. Bill Gasiamis 0:37 Last year, I asked for help from those who feel they’ve received tremendous value from the podcast by supporting it on Patreon, at patreon.com/recoveryafterstroke . Your support helps keep this podcast alive, and I’m grateful for everyone who listens and engages and contributes in any way they can, as always, I’d love to remind you about my book, The Unexpected Way That A Stroke Became The Best Thing That Happened , is a resource for offering practical guidance and hope for stroke survivors and their families. Bill Gasiamis 1:16 If you haven’t already, you can grab your copy on Amazon or at recoveryafterstroke.com/book . Now, I’m thrilled to introduce today’s guest, Brooke Parsons. Brooke is a stroke survivor, a Stroke Foundation ambassador and a lived experience consultant who has spent more than three decades advocating for stroke survivors and shaping the future of stroke research, she shares her inspiring story of resilience the challenges of living with deficit, and her work to ensure stroke survivors have a voice in the recovery journey. Let’s jump in. Bill Gasiamis 1:58 Brooke Parsons, welcome to the podcast. Brooke Parsons 2:01 Hi Bill. How are you? Bill Gasiamis 2:04 I’m really well. I am excited to have you on my show. We’ve met a couple of times in person. Brooke Parsons 2:10 Haven’t we? We’ve been social butterflies. Bill Gasiamis 2:15 We have, and more so lately than ever, because I have always known about you, but we just never cross crossed paths. Brooke Parsons 2:25 Is that a good thing that you’ve always known about me? Bill Gasiamis 2:28 Yeah, because I’ve never heard anything terrible, always nice, lovely things and and it’s all correct. And then when I met you, you know, when they say, don’t meet your heroes and all that kind of stuff, when I met you, I was like, I hope she doesn’t let me down and disappoint me, and you didn’t. Brooke Parsons 2:47 We were just sitting on the couches having a bit of quiet time, having a bit of a yarn. Bill Gasiamis 2:53 Yeah, that was at the conference that we were both at Smart Strokes. Brooke Parsons 3:01 That’s right, it was on the Gold Coast. Bill Gasiamis 3:03 On the Gold Coast, and I had a little bit of time to do a presentation. I did about a 15 minute presentation, and you did a few presentations, if I remember correctly. Brooke Parsons 3:13 I did one presentation. Bill Gasiamis 3:15 One, yeah, what was your presentation? Brooke Parsons 3:19 On my presentation was about the young stroke service, which is who I’m employed at the Flory Institute. So it’s a project that I’m working on, and I’m one of many. There’s a huge team involved. And I was very fortunate to say that I was going to smart strokes. So I was happy to present on behalf of everyone. Bill Gasiamis 3:45 Yeah, what is Smart Stroke? What is the Young Stroke Service about? Brooke Parsons – Early Life and Stroke Experience Brooke Parsons 3:51 So, the Young Stroke Service is about meeting the needs of people who have strokes when they’re younger. So you would understand yourself bill that your needs and wants when you had your stroke may not have been met immediately, because our needs and wants as young people having strokes are much different to society that are generally met in the hospital when they have strokes. So as a young person, it was about, how do I get back to work? How do I reconnect with my friends and keep those connections going, how do I be a fulfilling auntie? Brooke Parsons 4:46 How do I do all those things? Get a house or rent or I was very much at the very beginning of my life, and we’ve got an amazing medical system here. But when you’re discharged from hospital, that’s it, right? You’re out in the big, wide world by yourself. And although, over the years, I’ve been very fortunate to meet so so many, who have helped guide me, I’ve learned a massive lot as well. So it’s about addressing the needs and the wants of young stroke survivors in today’s world, we are between Victoria and South Australia at the moment. And it’s currently going well, I think. Bill Gasiamis 5:46 So you definitely were a young stroke survivor, if I remember correctly. You had your stroke at around 13. So tell me about that part of the process. What happened? What do you remember? How did it evolve? Not evolve? How did you kind of go through those early days of stroke with your family and yourself? Brooke Parsons 6:14 That’s a really good question, Bill, because I guess you know, I’ve got a lifetime now as a stroke survivor, 31 years, almost 32 years as a stroke survivor. So I’ve lived more than half of my life as a stroke survivor, that as a kid, I was very studious. That probably doesn’t surprise you, but I would always do my school work. I never missed school, I didn’t like missing school. I was always the eighth grade student, and then bang, I had my stroke. I was home alone, talking on the telephone to a friend about going to the local shops the next day to perv on boys, as girls do at 13. Brooke Parsons 7:05 And my life changed. My parents came home and found me on the ground surrounded by shattered glass, and they had to pick me up off the floor. At the time, my dad was a butcher, so he was used to dead weight, thankfully. He picked me up, I was 50 kilos at the time. He picked me up and he put me on my bed, and from there, my parents decided to take me to the local hospital, where I was given a migraine tablet, and my parents were told to actually take me home, and that if I had a good sleep, I’d be okay, but I couldn’t walk, couldn’t go to the toilet, couldn’t do anything. Brooke Parsons 8:02 And as a 13 year old, you’re also going through the 13 year old changes, hormonal changes, etc. So my parents stood their ground and said ‘No, we’re not taking her home because she can’t walk, this isn’t our daughter. I could barely string a sentence in any word that I was blubbering out. It was a blubber they weren’t clearly concise words. So I was then taken to a hospital on the outskirts of Melbourne, where I had a CT scan. My parents remained vigil beside my bed for that night, and neurologist came in at round 2am in the morning. Brooke Parsons 8:54 Said I’d suffered a major stroke affecting a size of a 20 cent piece, my brain being completely dead and surrounding areas damaged, and that if I survived the night, I’d be transferred to the Royal Children’s Hospital. Now that became home to me for six weeks. I was in there as an inpatient. I was then out for weekend leave for a few weeks in a row to make sure mum and dad could cope with me being at home. Because I think it’s important to remember Bill that, yes, my life changed, but so did bears, so did my younger brothers. Brooke Parsons 9:42 Because, you know, before they went out, the day of my stroke, I was a pain in the bum. I’m not putting any disclaimer on that, because I’m probably still a pain in the bum, but you know, I was this, a grade student that everyone just idolized and looked up to, never did anything wrong. So then to come home in a wheelchair, unable to really talk, while not articulate my words like I used to needing my mum to help feed me, barre me, do everything for me. Bill Gasiamis 10:30 It was a change of life for all of us. Let me take a quick pause to reflect on Brooke’s incredible journey so far, her story of resilience, advocacy and community building is why I started this podcast to connect, inspire and provide hope for stroke survivors and their families. If this podcast has been a source of value for you, I’d love your support on Patreon, by becoming a patreon at patreon.com/recoveryafterstroke . Bill Gasiamis 11:00 You’ll not only help keep this podcast going, but also join a growing community of people dedicated to recovery growth and making a difference in the stroke survivor space. Now let’s get back to Brooke and hear more about her remarkable journey. Brooke Parsons 11:18 And then you got another layer on top of that, where you had my school community, so I’d grown up like we generally do with our friends at school, and then one day, I was stuck in a hospital bed, and all my friends at school found out that I was paralyzed, and they didn’t know what was going to happen. And then when I did come back, there was this whole adjustment around, you know, how do we treat her? She’s now got, we were just kids, okay, so she’s got plastic legs on her legs. What do we do? Do we give her extra time? Do we not play with her? Do we invite her out anymore? Impact of Stroke on Life and Family of Brooke Parsons Brooke Parsons 12:11 So there was, I think there’s several levels of complexity to that, but above it all, and this is what I always try to remember to say, this is that I was 13. At 13, you’re still a baby. So in the big world, if your parents say ‘Go and brush your teeth, you go and brush your teeth. You don’t question it. You do it, because that’s what your parents have told you to do. I was very much that person. If I needed to go to the bathroom, I would say ‘Mum, I need your help. I need to go to the bathroom. If I wasn’t feeling well ‘Mum, I don’t feel well. Brooke Parsons 13:01 If I was at school, it was all about open communication with the teachers on how they could assist me and what they could do to very much make my life regular, to make it normal, because I still wanted to be that BROOKE I was before the stroke, I still wanted to be that Brooke that would get a grades, that Brooke that would be in the music band, the Brooke that everyone loved to hate. Didn’t understand why that had to change, but it did, and I think, if anything, I’ve gone from strength to strength. Bill Gasiamis 13:49 Now, we’re going to talk about that. I definitely think you have, but you know, navigating that experience at any time in your life’s hard, navigating it as a 13 year old, like it’s even harder. Your the thing about it is, like you mentioned, the thing that really stood out, which is that your life changed, but everyone else’s life changed in your family as well. That is a really important point, because I said, you know, I probably wrote about it in my book as well. I probably said, you know, the day my life changed. And every time I speak to a stroke survivor, it’s always the day my life changed. Bill Gasiamis 14:36 You know, they it was kind of the line in the sand moment from this before that line, it was like this. After that line, it’s like that. But very few of us, it’s not that we don’t acknowledge the people who have supported us, helped us all that stuff. It’s that they’re not front of mind. They’re not front and center, remote, because we’re going through our own experience, and we’re thinking about like how our life has become harder and more difficult, but our family and our caregivers are going through it with us together, and they have to pause everything. Bill Gasiamis 15:14 Their identity changes, and their work situation has to change, and their entertainment part of their life has to change, and the way that they occupy themselves and the hobbies they have and the people they hang out with and all that, it is a complete it’s a disruption of everybody’s life, yours, theirs and separately and as individuals, but also as a collective. Brooke Parsons 15:41 Absolutely and if you think about it, Bill, I just said then about my school friends and my school teachers and the school community. For yourself, it might have been the work community that you belong to, like you may be the stroke survivor, but the effects of your stroke go way beyond you, yeah, and they go way beyond me. And I can even say almost 32 years on that my stroke still affects people today. Bill Gasiamis 16:16 Yeah, okay, how I get it? But tell me how. Brooke Parsons 16:21 When I’m fatigued, they may find it harder to understand me because my speech is still troubled at times. We all say we change as people when we have strokes, and I guess I’m a bit of a a tough nut, like, there’s not much that shakes me, but when I’m shaken, I’m shaken to the core. So if I’m having a bad day, and I’ve let things build up and up and up, and then I just sit there and cry, whoever’s around me is affected by that, and that at times, has been work colleagues, unfortunately, and they’ve just had to, you know, go, okay, well, that’s you today, goodbye. Brooke Parsons 17:14 We’ll try again another day, or, I mean, I was just on the phone to a friend who didn’t wish me a happy birthday three weeks ago, and that was the first time in the entirety of not knowing her that she hasn’t done that she didn’t even register until the last five minutes, and I went ‘Well, look, we can all be a little selfish. Brooke Parsons 17:44 And I was trying to relay it back to her situation, but I said ‘You didn’t even wish me a happy birthday like and then is that me being selfish because it’s Christmas and we’re all under the pump to get everything done, or was that me being a friend and really just laying it out on the table to a friend who didn’t want to hear it? It’s a little bit. It’s a double edged sword, I think. Bill Gasiamis 18:17 Are you any different from any other person on the planet, honestly, because I get what you’re saying, because it’s partly your stroke affects you and the other people around you every single day. But quote, unquote, normal people, they and like, have their meltdowns in a different variety or? Brooke Parsons 18:41 Absolutely, think about it. Everybody has a crappy day at work, everybody has disagreements with friends or family. Everybody in today’s day and age is looking for extensions on bills and all sorts of things. So I am no different. The difference between me and some others is that I carry the burden of the stroke. Yeah, okay, and that is obvious because I’m in a wheelchair. Bill Gasiamis 19:17 That’s unique, right? In one way, maybe in a community where you hang out and there’s not a lot of survivors, because we both hang out in communities where there aren’t survivors of stroke, and then we hang out in communities where there are tons of them, but when you’re in a community where there’s not a whole bunch of other stroke survivors or people with disabilities or any challenges like that, it’s kind of like of the way I feel it is people who are not directly impacted by a medical situation touch wood. Bill Gasiamis 19:54 Because they’re healthy and well and nothing’s gone wrong with them. It’s, you know, they’re ignorant, and not willfully ignorant, but they’re ignorant. And then it’s like, how do you know? Is it our job every time to educate people or not? Is it? I don’t think so. Brooke Parsons 20:13 It shouldn’t be our job. But I’m sure you’ve found over the years, Bill, just as much as I have, that it ends up being our job. Challenges and Adaptations Post-Stroke For Brooke Parsons Bill Gasiamis 20:26 Some people deserve it. Some people deserve it in a way where, if you can nicely, kind of bring them back into reality about something, then I think it’s really necessary. Some situations, I’ve found myself being tempted to say something and then about my situation where, because I don’t look like I’ve had a stroke, the assumptions about me are huge, you know, and it’s like, maybe it’s not the right time to tell you in this particular forum what I’m what it’s like to be me, what I’m feeling, what I’m going through. Bill Gasiamis 21:03 What my left side feels like, and maybe you’re not being mean spirited or anything, and I don’t need to really correct you or pull you up or anything. But then at the right time, it’s just a little bit of information. I feel like it’s better to give people information about me so that they have an awareness, even though they don’t relate and can’t understand but it’s more about supporting them to understand me better. Bill Gasiamis 21:30 I think it’s like that, that I prefer to do that where I’m supporting you, so that we can interact in a way that’s not hard for both of us and and awkward for you, because I don’t feel awkward or anything, but you might take it like that if I give you a bit of a hard truth that you wouldn’t expect. Brooke Parsons 21:54 You know, Bill, I think one of the big words you said right at the very beginning of that was “Assumptions”, people make assumptions all the time about everything and anything I’m sure it’s all in our makeup, right in our genetics. I found in the very early days, I would go and speak at Rotary groups, and I would sit in rooms, and I would just tell my story. I was the girl with the damn it doll, the doll that was lifeless limbs, and, you know, the fight that I had on my hands and I would look around the room as I was speaking, and no matter what I thought of my speech. Brooke Parsons 22:41 There would be these men crying, and I could never understand why, right? Because what happened to me happened to me, not them. But I think what I’ve learnt over the years is that, yes, it’s taken a lot of education on my behalf to give out. But how much better are those people for knowing that education you’ve had a helping hand in that everyone we know has had a helping hand in that which has had a roll on effect, because assumptions can be horrible things. Brooke Parsons 23:26 Assumptions, you know, I could have made my mind up about you before I’d even met you, you know, but thankfully that one day, I saw you sitting there alone, and I just said ‘Are you okay? And then that sparked a conversation. That’s all it needs. Bill Gasiamis 23:48 Yeah, I agree. And it’s like, and same here. You know, I had heard about you. I’d seen some of your stuff on socials and what have you. I knew that you were involved with the flurry. I didn’t know what capacity or what you were doing. A friend of mine told me that he met you because he works at the flurry, and he was just, he was there because his role is to scan people’s brains when they come in for diagnosis or for different research projects or whatever. And he’s in the thick of it, with survivors of loss of neurological conditions all the time, and recently for him, just a little while after. Bill Gasiamis 24:39 He started working at the flurry, and he’s been in hospitals his whole life like he was in a senior position at the Royal Melbourne Hospital in the Radiography department, amongst other hospitals that he’s worked at. And just after he joined the flurry, his daughter. Had a brain hemorrhage, and she was 17, and he was in near my hospital bed, next to my hospital bed when I went through it, you know, in 2012 and he’s the one that guided my recovery via the introduction to the person who would eventually become my brain surgeon, and all those things. Bill Gasiamis 25:32 Cris was in awe of the role, I suppose that stroke survivors, not Brooke Parsons, yet he wasn’t like that were playing in the bringing light to this condition, awareness to this condition, breaking those assumptions down, and explaining things in a way that non stroke survivors would understand. And he was talking about how you guys met, that you guys spoke your presentation, what the project was about, and even me at that time, previously, when I say previous, me, pre-stroke me, would have made a decision about you, and because I wasn’t In the frame of mind. Bill Gasiamis 26:21 Because I was actually very similar to what I am now, but I was a little bit kind of like, what’s the word like, front when somebody saw me, I was glass half full kind of guy, but in private, I was glass half empty kind of guy. So I had this kind of Jekyll and Hyde thing that I used to do. I used to present really well in front of people and then make assumption and then and then not do the same thing for myself in the background. Brooke Parsons 26:52 Yes. Bill Gasiamis 26:54 So when I met people who, when I spoke with people who had done different things in certain areas of what I where I couldn’t picture myself or hang out. Bill Gasiamis 27:06 I was threatened to buy them, or I was whatsoever, like I would put them on a pedestal, and then I couldn’t interact with them, because then I would think that they were better than me, and I like so many weird things that came out of these interactions, which were so false, right? And the stroke, what the stroke has taught me, and the podcast has taught me, is that all the things that I tell myself about me and other people are all rubbish. And unless you have the opportunity to sit and speak to somebody and get to know them about what they are like. Bill Gasiamis 27:41 Imagine being negatively impacted by somebody I haven’t met because they’re talking on a stage about a topic that’s dear and near to them. Because I don’t have the skills to do that yet, and I think that, and I’ve put them on a pedestal, and I think I’m not good enough yet. I mean, seriously, that just bring myself back down to earth, settle down, calm down, take a breath and just go and say hello and meet this person and formulate your own actual thoughts about this person, and from an interaction, not from far you know, this afar thing. Bill Gasiamis 28:20 Social media, this afar, thing that we do is terrible, and I’ve found that the podcast has helped me just have no thoughts about people, bring them on and then go for it. I don’t know anything about anything, and I’m just going to, we’re going to discover about each other in the moment. Brooke Parsons 28:42 You know, Bill, I think that. I think people are afraid these days to make friends, and I think that’s exactly what you’re describing there. You know, not making an assumption about anyone being willing to sit down and have a bit of a chat with them, find out what you can and work with what you’ve got, whether that’s becoming great mates or colleagues or, you know, the person you might see once a year or once every few years. It doesn’t matter, but there’s some sort of workable relationship there. Brooke Parsons – Inspired by Mentorship Brooke Parsons 29:29 I’ll never forget 21 years ago when Julie Bernhard rang me and introduced who she was, and that’s how I actually got into the flurry and into research. Up until that point, I was just one of these little people that went around and said ‘Hi, I’m Brooke, I had a stroke. I heard Julie B’s voice on the phone, and at the end of it, I just went, yeah, I’m going to give this a go. And I’m going to give this a go because she sounds like she’s a woman who knows what she wants and how to get it. And she was one of those people like I was talking about right at the very beginning. Brooke Parsons 30:18 Who said to me, who’s your adult neurologist? If you’ve left the children’s now, where are you going? And I went, do I need someone? But it’s people like Julie B and Vincent and people way smarter than I could ever be including your friend, Chris, because I know exactly who you’re talking about, that I admire, that I look up to. I’ve been so fortunate to be guided by I asked for their opinions, and I remain open in in the feedback that I get from their opinions. But as a person, if you ask me to go outside and speak to a stranger, I’d have no idea on how to do that. Bill Gasiamis 31:16 Yeah, I think where we’re getting at is is that this particular moment in time, with regards to stroke recovery, is bringing stroke survivors into the research field and treating us as equals, that’s where we’re at. We’re starting there equals in that what we’ve got to offer from our perspective, and what the researchers or the doctors have to offer from their perspective are actually both very useful things, and they need to be combined where previously it was, that was the part of my assumption about who these people were and what they did, was that they’re going to tell me what to do. Bill Gasiamis 32:00 And I’m going to have to go along with it, whether I like it or not, no. And that kind of does, that’s the part that doesn’t work for me. And I always had that while they’re in a white coat, I know what that means for them, you know? Or do you know what I mean? So it was like that kind of assumption that I was making is I thought x of certain people, and then I thought that they had assumptions about me, and it was just too messy in my head and to break down those. Bill Gasiamis 32:27 Those my ignorance by embedding myself into a podcast and then into the community by meeting tons and tons of stroke survivors, doctors, researchers and all that kind of stuff. What I realized is that I think we’re moving to that phase where there’s equality in what, in how we’re seen by the research and the doctors who work on solutions for stroke survivors, whether they are physical therapy solutions or neurological solutions or emotional issues. Brooke Parsons 33:06 Med solution, I think that Bill that you know, you talk about, maybe the professors being up here and us down here, that’s it. Anyone years ago, I was very much like that, yeah, so I’d speak if I was spoken to as we’re now, you can’t shut me up, right? Because Julie professor, Julie Bernhard, Julie be to me, yeah, he’s taught me over the years that my voice is actually really powerful, and that if I don’t agree in something that the professors are saying, I need to tell them now. Otherwise it could change research. It could change the way things are done. Guidelines are done, policies are made. Brooke Parsons 34:03 It could change the way stroke survivors are treated in hospital, and maybe not for the better, but because people like you and I have been through it, we can say, well, actually, that didn’t work. Or have you thought about it from this perspective? And that helps fill the gap that what the researchers don’t see from day to day in a hospital room or in a hospital or even in a home setting that we see because we as stroke survivors don’t get the opportunity to take our stroke off and have a holiday from it. Okay, that’s the sad reality of it. Brooke Parsons 34:47 It’s with us. 24 hours a day, seven days a week, 356, days a year. For the researchers, they may be researchers 9:00 to 5:00 I know they do accept, allow us, but let’s say 9:00 to 5:00, they get to go home to their families and have a life outside of research. So I think for me, that equality is coming to an equal because if I don’t speak up, or if I don’t speak up, on behalf of those who can no longer speak up. Unfortunately, then our messages and our words are never going to get across. Bill Gasiamis 35:32 Yeah, nothing will change and and not only the people who can’t speak up, the people who don’t know what to say when they’re faced with the situation, I feel like what we’re doing, you and I right now, is what we’re doing is we’re encouraging all the stroke survivors listening to get involved and to speak up and to be part of research and to be a part of whatever the Medical kind of world needs from stroke survivors. Bill Gasiamis 36:02 Whether you’re presenting, whether you’re speaking, whether you’re involved in research, what we’re saying, I think, to everybody listening and watching, is we need to get involved. We need to make ourselves heard and our issues known so that people can start knowing that there’s more work to be done. Brooke Parsons 36:27 There’s more work to be done, but also from a funding perspective, and I don’t mean to bring up dollar value, but at the end of the day, researchers need funding to do research, and often to get funding. Now, more than not, you need to have a consumer involved in your steering committee or on your board of your research, and that needs to be shown in the grant application. And I think if we can get consumers involved even before grants are written. So I know I was consulted about the Young Stroke Service before it was even written up as a grant application. Brooke Parsons 37:13 And then I was asked to check the grant application before it was submitted. And then I was one of the first handful to find out we were lucky enough to get the grant to run the project at every step of the way I’ve been consulted and that, to me, has been real, true co design that’s being having a consumer involved in every twist and turn of the project. I think, you know, I’ve been around a long time now, sadly. Bill Gasiamis 37:56 Not sadly. Brooke Parsons 37:57 I don’t know, the gray hairs is starting to show. Bill Gasiamis 38:00 I just turned 50. I’m excited about that. Are you serious? Celebrating Milestones and Navigating Fatigue Brooke Parsons 38:04 Absolutely, good on you. What a milestone, right? The other week, I turned 45 and it’s like I woke up excited, but then my day just got on with meetings and all the normal things, but then I made a cake. So when I went into work two days later, I had a cake to share with the researchers and the colleagues there, who are my friends, my work buddies, I call them. And you know, that was nice. That’s what I needed, because we can talk about all of this, and I’m very surprised it hasn’t come up yet. Brooke Parsons 38:52 And I’m not sure how you find it, but I find as the year goes on, full steam, beginning of the year, my puffing Billy ready to go right? And then as the year gets on and on and on and on, I start to slow down because I’m fatigued. So as a stroke survivor who’s been around for a very long time, there’s new stroke survivors coming through the ranks to do what I started 21 years ago, and to do what I’m doing today in different projects, etc. And you’re right, it’s about breaking down those those those equality walls, to realize that it’s you’re just as valuable. Brooke Parsons 39:47 And your input is just as equally as important as what the researchers who use but at the same time, you need to remember, and when I say you Bill, I mean all stroke survivors and researchers need to remember at times we can all get fatigued, and that when a stroke survivor gets fatigued, it may show in different ways. And then I guess I would be asking that members of the team around that stroke survivor would pick up the slack for that stroke survivor at the time of their fatigue. Bill Gasiamis 40:23 That’s fair. So are you full time employed in this role? Brooke Parsons 40:38 No. Bill Gasiamis 40:39 How many hours a week do you do? Brooke Parsons 40:42 Too many? I am okay, so I probably do about 5 to 10 on the books, but there’s a lot I do off the books. Bill Gasiamis 40:58 No doubt, and how many years have you been doing this type of work for, or have you had this role, I suppose. Speaker 1 41:10 So, with a monetary reward of being paid probably the last two and a half years for that, for 21 years, I’ve always been volunteering of some way, shape or form. Bill Gasiamis 41:28 Wow, such a long time you would be the most prolific volunteer ever. I mean, you’re I’m saying that now being a little bit funny as well, but realistically, if you think about it, the amount of impact that all your work has had for 21 years, you know, and evolving with somebody who was very young, you know, very, very young when they had a stroke, and then bringing you along for the journey for 21 years mean that you got to influence people and explain to people what it’s like as a 13 year old, as a 23 year old, as a 33 year old, and so I like, Do you know what I mean? Bill Gasiamis 42:13 And move through the whole life cycle that you’ve had since very young, that’s really going to that’s going to be very insightful, and it’s going to make Wow. It’s going to make what you can offer researchers so much more man rich in information and experience and all that kind of stuff. Does that make sense? Brooke Parsons 42:41 Like it does make sense, but I think we’ve all got a lifetime that we can explain. So where you were pre-stroke, to what happened with your stroke, to straight after your stroke, to the next little bit, to meeting others who have had strokes and how that’s made you feel, etcetera, will be different to my journey of the last 30 something years. Bill Gasiamis 43:09 Yeah, but your journey has been, your focus has always been about making and improving the lives of stroke survivors. Brooke Parsons 43:18 It has, yes. Bill Gasiamis 43:20 Yeah, and mine, and I’m not saying that it should have been. What I’m saying is your version, only because you had a stroke of 13, no other reason. You know, you’ve put a lot of time and effort into improving the lives of stroke survivors, which includes you, but that’s alright. That’s the whole purpose. You need to be your own advocate, and while you’re advocating for yourself, other people benefit, and that’s awesome. Brooke Parsons 43:49 I think Bill there that you You’re right, but I think I do what I do not only because I love it, but because, unfortunately, stroke is an illness that we’re not going to be able to stop. We want to be able to stop it, but we can’t. So if I can have an impact on research now, that’s going to help someone who has a stroke in the future, I’ve done my job. That’s what it’s about. It’s not about going our strokes exist, and now they don’t. I want to be able to do that, but we can’t. So if it’s about just making life a little easier for somebody who has had a stroke, then all the better. Brooke Parsons 44:48 Like, if we think back to the day that you and I met, and you just need a quiet time and poor Bill, you get me come up. Are you okay? You didn’t need to be open to a talk, you didn’t. You could have just said ‘Oh, bugger off. I want some time to be by myself. I would have had to have respected that, but I was concerned, because you were by yourself. Bill Gasiamis 45:17 And I look really pooped, didn’t know you did. Brooke Parsons 45:22 Although in Adelaide, I thought you looked more pooper. Bill Gasiamis 45:26 Yeah, I think you’re right. Brooke Parsons 45:28 Yes, so when looking back at that first conversation that you and I had, what did you take away from that talk? Bill Gasiamis 45:40 Look, I just felt like you were, like you knew me more than anyone else, so you tuned in. You exactly knew where I was at. You didn’t even have to actually ask me. You knew and my quiet time was, I think, in that foyer when there was no one in there, it’s really nice and quiet, it’s large, it’s got good light and that and the sensory overload that I was experiencing when I was in the rooms where there was presentations happening and one after the other, after the other. So we’re talking about fluorescent lighting, lots of light coming through the windows as well. Bill Gasiamis 46:21 Which we were right were right there details on the on the board, on the screen, where the presentations were happening, the sound from the microphone system and the PA system. And it was like, I am just nothing sinking in anyway. So it doesn’t matter who was presenting or what they was saying. I was like ‘I can’t be in here. I’ve gotta be elsewhere. I’ve gotta give my time, my brain, time to settle down, because we’ve got another half a day to get through, and the next day to get through. And I get energized emotionally and mentally being there, but I get drained physically. Brooke Parsons 47:03 So completely agree. Bill Gasiamis 47:05 I’ve got to play that game, right? So when you came over and we had that chat, firstly, I wanted to meet you. I was hanging out to meet you because Chris told me about you earlier, and I knew about you from before Chris told me about you. But also I knew you were going to be there and you, you were going to be presenting in some capacity, and that was my goal, was to get there and meet more stroke survivors. So I met you, I met Adrian O’Malley eight. I bumped into booth again, Brenda booth again, and a bunch of other people, right? And I thought, excellent. Understanding and Addressing Oversights Bill Gasiamis 47:42 This exactly what I want. And not only do I want to meet people just for the sake of meeting people, but meeting people who get me, who I don’t have to explain stuff to, is just such a like it’s such a relief to just be in a space where people just totally get union have to say anything, and that helps, because when I’m with my family and friends who’ve known me my whole life, and even though they know that I had a stroke or two or three in 2012 to 2014, they still default to my regular how they knew me. How they knew me before stroke, and they treat me like that. Bill Gasiamis 48:24 And I’ve gotta always kind of massage them into like, I’m having a bad day bill, or I’m not up to this kind of, you know, whatever Bill. And I’ve gotta keep telling them and reminding them, by the way I had a stroke once, you know, and I don’t mean to do it and be nasty anything. I just gotta keep reminding them that I am having one of the things that happens to people without a stroke, and it hasn’t gone away yet, and it’s been 14 years, or 10 years, or whatever. It’s been 12 years. Bill Gasiamis 48:58 So when I’m in a space where people get me, it’s strange that it happened to be I had to go through stroke for people to really get me, but I love it. I love it even though I’m wrecked, even though I’m tired, even though it’s just, I don’t know, it’s easier, but, and you know where I was disappointed, I’ve got to say, right? So you know, when we went to Adelaide for the Asia Pacific Stroke Conference, we’re in a whole place where everyone is there for stroke. They’ve traveled from all over the world, and talk about not getting us right. Bill Gasiamis 49:36 There was a lady who did a presentation at the very opening of the event, and she had a stroke, and she had deficits. I’m pretty sure it was left side deficits. She wasn’t able to walk. Brooke Parsons 49:55 Right. Bill Gasiamis 49:57 Was it her left? Brooke Parsons 49:54 Right. Bill Gasiamis 49:55 Right? She had deficits. She couldn’t walk, she couldn’t move her arm, etc. And she was meant to get on a stage, and they brought and she’s with her caregivers, etc, comes to the stage, to the edge of the stage, and there’s no ramp, I know, push her wheelchair up the stage to get her to the podium where she could stand, and it’s like, are you guys serious? Bill Gasiamis 50:27 We are at a Stroke Conference. Everyone is talking about how they’re going to help stroke survivors overcome all these things and improve outcomes, and, you know, have better results in hospital and all that kind of stuff. And the one thing where should have not even been a thing. Brooke Parsons 50:49 That shouldn’t have even been a consideration. Bill Gasiamis 50:51 Yeah, there should have just been a ramp there, part of the stage, yeah, and there was no, no one there. So I so that gave me that, that view of what it’s still possible, what it’s still like, even in the stroke medical world, and when and I felt like I wasn’t understood in that room, even though it wasn’t me or about me, like I felt you still don’t get me. You guys don’t get me, you spent 30 years doing this stuff, your professors, and nobody thought about a ramp for stroke survivor. Bill Gasiamis 51:30 What do you mean? Whereas, when I was in the room with at the smart strokes conference, I felt like you guys got me, everyone got me. You know, you definitely did, but just generally, that was a way better, like it was a way better experience, there was ramps everywhere, it was accessible. Brooke Parsons 51:54 Just interesting. Feel that there was more peer support at Smart Strokes. Bill Gasiamis 52:01 Yeah, the intimacy of that event may have been what enabled that. So I get it, and there was a lot less international flavor there, so I totally get that, and it was a very well organized event. It was a great event. The presentations were awesome, and so they were at Asia Pacific Stroke Conference. But I just feel like I don’t know if it was the organizers or the people who run the Asia Pacific Stroke Conference, but it’s very telling when the most important thing is overlooked access. Brooke Parsons 52:45 For a stroke survivor, this brings me to accessibility. We’ve all had accessibility issues in one way, shape or form or another, you bring up a very good point. Was it the organizing committee at Asia Pacific strokes conference that overlooked around to you and I, it’s just natural. It’s what should be there, but did anybody in that organizing committee have had a stroke, none. Bill Gasiamis 53:29 That says a lot. I agree. Brooke Parsons 53:31 Therefore, it brings us back to our original point that humans need to be involved in every single aspect, agreed, not just from a uni giving their input, not just from an institution giving their input, not just from an organizing committee, but from every angle, consumers are so needed and wanted. Bill Gasiamis 54:02 Yep, I totally agree, absolutely. I mean, that’s the only thing that could possibly explain why they missed such an obvious thing. It’s like the elephant in the room. How can you not see it, honestly, but at the same time, maybe that’s there’ll be a learning from that, surely, because I think people would have told them, what are you guys doing? How come you didn’t have a ramp there? Brooke Parsons 54:25 Did you give feedback? Bill Gasiamis 54:28 Not about that issue, no. Brooke Parsons 54:30 Okay. Bill Gasiamis 54:31 Yeah, but I imagine that others would have surely. Brooke Parsons 54:36 Yes, I’m hoping so. Bill Gasiamis 54:41 So that’s interesting. I thought that others would, and I thought maybe I don’t need to, but I feel like now I should have, even though others might have made a point of that, I feel like I should have made a point of that just nicely in an email saying ‘Hey guys. Brooke Parsons 54:59 Important to us. Bill Gasiamis 55:01 Yeah. Brooke Parsons 55:01 It’s important to you, you need to voice it. She could all live by the rulings of, someone else will mention that, or someone else will give feedback. But what if nobody does because someone else is thinking ‘Oh, Bill will give that feedback. Bill will do that. He was really upset about that when I saw him. I’m sure he’ll give that feedback, but you are thinking someone else was going to give that feedback. So no matter how many times these people hear it, they need to hear it. Bill Gasiamis 55:34 Yeah. I agree. I suppose the more people saying it, the more it’ll sink in absolutely. Brooke Parsons 55:44 Yeah, we’ve all been in those shoes where we wouldn’t have given ramps a second thought. Bill Gasiamis 55:50 Oh yeah, I definitely was that quiet. Brooke Parsons 55:55 Moved into an SDA, a Specialist Disability Accommodation, and yeah, the doorways are wider, and it’s very much catered to my needs. As I think I’ve picked up two things so far in four months that ain’t right with the place. But my point that is, I’ve gone from renting a one bedroom apartment to this 1.5 bedroom SDA apartment, the bathrooms bigger, so I’m able to get my wheelchair in, wheelchair out. I’m able to shower comfortably here, all these things I wouldn’t have thought of just as I didn’t think of when I first wanted to move out of home. Brooke Parsons 56:46 But until you’re faced with those challenges, you just think ‘Oh, someone else will deal with that, but someone else’s issue that’s not mine. So we’re all my point is we’re all made to be like that, but if we can just remember, have that little voice in our heads going, but my voice is just as important. And if I thought that in the conference, I need to relay that. Brooke Parsons Empowering Stroke Survivors Bill Gasiamis 57:16 Yeah, that’s the point of the conference, to bring stroke ideas, information together, right? Brooke Parsons 57:21 Absolutely, and consumers are more and more playing a role. So a couple of years ago, you would never have seen the the level that we saw at Smart Strokes of consumer involvement. Bill Gasiamis 57:38 You’re literally talking about a couple of years ago. Brooke Parsons 57:41 Actually, two years ago, yeah, you might have had one stroke survivor. Might have opened up the conference, and that was about it. Now this year, what did we see? Bill Gasiamis 57:53 Yeah, they were front and center in every part of the conference, stroke survivors, every part of the conference. Brooke Parsons 58:00 Absolutely, yep. Bill Gasiamis 58:03 And Saran opened up quite a number of those main morning presentations. It was great, actually, absolutely, Brooke Parsons 58:16 So I know last year I gave like, a three page letter feedback of all the things they could have done better for Smart Strokes, most of it was taken on board. This year my pet peeve was about the accommodation, but we won’t even go there. So I haven’t really provided feedback per se, but I am sure if I was that stroke survivor who had to get up on stage, maybe I’d be a little different, because it would have impacted me directly. Bill Gasiamis 59:04 Yeah, I had to move so Asia Pacific, Stroke Conference. I had to move from the hotel room I was at that was suggested as the place to go for affordable accommodation near the venue where smart, where the Asia Pacific Stroke Conference was, and I think the organizers didn’t actually go and check out the accommodation that they recommended. Bill Gasiamis 59:35 And let’s just say it was old, which is not relevant at all, because that doesn’t bother me in one bit, if something is old, but it wasn’t clean, and there was a lot of dust and debris in the air vents, and you could see places where furniture had been moved, and there was like a thick layer of dust that had a main vacuum. Brooke Parsons 59:57 I wonder if we were talking about the same place. Bill Gasiamis 1:00:01 We may have, we won’t mention the name, and then, as a result, I had to relocate and move because I was so unwell with my sinuses. And I made a note to the organizers and said ‘Hey, guys like you made a suggestion, and it seems like it’s been a while since you’ve gone and inspected that property that you’re suggesting to us to go and see, to go and stay at because the standards are not good enough, these are all the things that I’ve experienced, these are the photos to prove what I’m saying. Bill Gasiamis 1:00:43 Like the dust was caked onto the air vents, yes, and I’d like to let you know that you need to do more in inspecting a place when you recommend it. So that was received well, and then I changed accommodation. The hotel wasn’t very supportive, but the organizers were a little bit upset, horrified that it would event would have that that thing would have happened. So I suppose, like I spoke out about that, because I know that a lot of other people were may have been impacted by that. Bill Gasiamis 1:01:24 And it’s just that I’m still defining my role in how, what kind of role I’m playing in the community, in stroke survivors community, very powerful one. Well, I hope so, with the role, as in, like I have been, I have been a little bit not distant, but I have taken purposely a slow approach forward and, you know, stayed in the background because I didn’t know whether it’s an old, this is old Bill again, you know, going, I don’t know if it’s appropriate for me to talk to people like this, who are in these positions, who have these types of qualifications, and, you know, tell them what I think. Bill Gasiamis 1:02:15 You know. So it was, I’m kind of about getting over that, and I don’t need to tell people what I think from I know everything perspective, it’s just from a you guys are missing the obvious thing, like the ramp at a Stroke Conference. You know, I’m feeling more and more comfortable about being in that position, and I think I owe my listeners and my guests the responsibility of taking what I’m learning from them. Bill Gasiamis 1:02:44 When they offer me an hour of their time to listen to an episode, I think I owe them a responsibility to sort of take it to the next level and go ‘Hey guys, this is what I’m hearing from 330 stroke survivors that I’ve interviewed. This is what you need to be aware of. Brooke Parsons 1:03:03 Yes, but I think Bill, you already do an incredible job. Bill Gasiamis 1:03:10 Yeah? Brooke Parsons 1:03:10 What you do? So, Bill, can take a hike for a little bit. Bill Gasiamis 1:03:15 Yeah. Brooke Parsons 1:03:18 The only bit of advice I would give if I’m allowed to give you advice is, choose what you want to make a difference in. And by that, if you want to talk about ramps and stages and conference centers, you might be thinking more along the architect side of things, accessibility side of things, that if it was a peer support thing, you might go. Brooke Parsons 1:03:52 I might just put you in contact with Adrian O’Malley and Brenda Booth, or The Flooring Institute, or whoever that would specialize in that, and then you could proactively do the whole conference stage sort of thing. I’m only using that as an example. What I would tell you is that you can’t do it all. Bill Gasiamis 1:04:18 No, no, none of us can do it all right? That’s very important. Brooke Parsons 1:04:22 Because if we don’t look after ourselves, we’re unable to look after each other. And at the end of the day, as a peer support group, who do understand each other, we need to be able to look after ourselves. Bill Gasiamis 1:04:39 I appreciate that. You know why? Because I haven’t actually really thought about what where I want to play most at that’s so that’s a really good point that you made there, and this might encourage me to sort of think about where that might be, whether, like you said, whether it’s accessibility, whether it’s something else. That’s the first time I’ve actually heard it like that. And why? Perhaps I felt like I can’t really comment about all these other things because I haven’t picked it as my hobby horse. Brooke Parsons 1:05:13 Maybe and look, we’re all here to help and to guide you and to listen and to pose questions that probably mean nothing to you, but to get you thinking about what you would like, where you feel that you can make the biggest difference. Bill Gasiamis 1:05:38 Yeah, that would be good to know that. Oh, my God, I think about that. Brooke Parsons 1:05:47 Ring. You can always email. Bill Gasiamis 1:05:51 Thank you. So what can you talk about some of the work studies, research that you’re involved in currently? Can you give us a bit of a idea? Brooke Parsons 1:06:03 Absolutely. So obviously, I started out 21 years ago as the consumer representative for the avert trial, which is a very early rehab trial. It was an international trial run out of the flurry under the direction of Professor Julie Bernhard. At the time, she said ‘Can you give me three years of your life? And at the 15 year mark, we presented the results of that trial. So there’s no time frame on research. I think that’s the biggest thing I’ve learned, is that you know, if you’re going to do something, you do it properly. From that, I’m now the consumer consultant for the avert dose trial. Brooke Parsons 1:06:54 So we’ve learned that you can get a stroke survivor up out of bed, but we’re trying to get the exact dose right, because it wasn’t necessarily correct in a vert. I was also the consumer consultant for pesto, which was a drug inserted into a person’s spine to break the paralysis cycle. I was a part of the novel project. Novel is an architect project, actually, and that had me hook, line and sinker. That was if we had an unlimited budget, how would we build a hospital? What would it look like for stroke survivors? Brooke Parsons 1:07:48 And I had Rosie from the Jetsons, for those that aren’t too young to remember the Jetsons on TV, and they had Rosie, the robot that would clean up after them, etc. And we would have lighted walls. So if I put into the keypad on a wall that I had to go to physio, the walls would light up all the way to the physio room, etc. So that was really cool, because you could think outside the square as to what you wanted to do. Brooke Parsons 1:08:23 I’m now involved in the Young Stroke Service, which we briefly touched on at the beginning, and there could be something coming up, but I’m under wraps at the moment someone stay tuned. Shaping the Future Bill Gasiamis 1:08:47 Alright, okay. Well, I think I know part of the, some of the stuff that you’re working on not going to mention it. That’s alright, and I understand why you might keep things under wraps, It’s important to do that. So what does it look like for you going forward in the next five years and 10 years in this space, do you still see yourself hanging out, playing, supporting, being involved? Brooke Parsons 1:09:21 There’ll always be a spot for me. It’ll just be however big or however little I’ll want it to be, the way I’m looking at 2025, it’s going to be a massive year. Bill Gasiamis 1:09:37 Okay, for research and stroke survivors for what specifically me, for you. Brooke Parsons 1:09:44 For me in the research world. But let’s keep in mind that whilst I know where I’m heading, personally in the research world, I’m always thinking that, if I wasn’t around, would my role still go on? Who would do my role? Who’s coming up through the ranks? How do I want my role left from me for the next person to take over. So there’s always that going on in the background. Bill Gasiamis 1:10:31 I like that. I like that you’re thinking about that because then we don’t want any of this to stop. Brooke Parsons 1:10:40 No, because it’s much bigger than you and I, right? And life is fleeting, that’s the truth of it. So I mean, stroke research was always around before I started, but the consumer voice wasn’t as powerful as it is today, and I’ve had a real helping hand in making it powerful. So what can I do to ensure that that powerful voice of the consumer stays alive well and truly beyond my days when I decide, right, it’s time to retire, I’ve had enough need to go and sit on the Whitsundays. Bill Gasiamis 1:11:31 Yeah, I like that. You’re thinking of that. What do we call that? Not it’s like, what’s the succession plan? Brooke Parsons 1:11:42 Absolutely, yeah, we definitely need that everything we do, in research, there needs to be an outcome, but there needs to be a plan beyond that. So if we want consumer voices to be sustainable, beyond me, beyond you, what needs to be put in place for those for that to still happen, and it is happening. It’s happening with grants. Now you can’t get a grant without consumer involvement. Bill Gasiamis 1:12:27 So, it seems like has there been a policy change or some kind of a change in the way that these organizations do research that kind of embeds that or cements that in? If this doesn’t happen, then nothing happens. Brooke Parsons 1:12:41 It’s starting to but I still think there’s an element of a way to go. So a researcher may approach someone and say, will you be on our board? And they the stroke survivor can say yes, but then often penciling in the monetary awards of having that stroke survivor on the board is forgotten about. So you’ve got the element of having the stroke survivor committed. Yep, you’ve got them. But then it’s making sure the grant reflects the consumer’s involvement. Bill Gasiamis 1:13:26 So it’s not just about ticking the box. No, you spoke to a stroke survivor. Technically, they’re on the board, but then that’s about it. Brooke Parsons 1:13:35 Yeah, because if we think 20 years ago, it was very rarely heard of that a stroke survivor was on a board. Now that’s just expected you have a stroke survivor on your board. Okay, it’s taken us a while to get there, but we’re getting there if it’s written into grants, the monetary reward side of it all, then in the next 10 to 15 years time, that’ll just be ordinary. And therefore, why wouldn’t it be sustainable? Bill Gasiamis 1:14:20 All the up and coming Brooks will just fall into the program as per normal, as part of the normal running of a grant process of a research program. And then there won’t be that whole like the battle. It’s for lack of a better word, the lack of the like the Battle of the stroke survivors, being heard, being included, being part of the program where that’s just expected. It’s standard every time there’s a grant provided or people asking for money. Your research is happening is just okay, stroke survivor involvement number one starts there and then going forward from everything else. Bill Gasiamis 1:15:10 That’s such a great way to position research, especially it’s a great thing for other people helping survivors of other conditions to also imagine if we could kind of put that broadly into, you know, cancer. Cancer survivors are involved at day one day dot. Heart patients, they dot this patient, you know, that patient always that they dot, that’d be great. Brooke Parsons 1:15:43 I think so, and the other thing to remember is that writing a grant or being in research takes a team. There’s no I in team, and that motivates me every day to get up and do what I’m doing, because it really does take a team, a team of exceptional humans, whether they are strict survivors, family carers, researchers and their Families and everyone needs a little bit of someone, and that’s where that peer support and that common understanding comes in. Bill Gasiamis 1:16:31 Yeah, it’s that party I’ve got a part in my book that’s all about community. It’s like, find your community and get involved so that you can feel understood, heard, that you can feel like I’m playing a role, playing a part. You have purpose, meaning. Tell me a little bit about that for you, like the purpose and the meaning side of it does. Have you ever had that thing in your mind, like, you know, what’s my purpose in life? Have you done that? How have you? Because for me, I had a purposeful and meaningful life before stroke. It was all about my kids. Bill Gasiamis 1:17:08 It was all about raising them and all that kind of stuff, and then they let you down when they turn 18, because they don’t need you anymore, and that your purpose, you have to redo it, I suppose, revisit it, and work out how you’re going to go forward. And one of the big things in my recovery was when I discovered the purpose was to help other stroke survivors, when I kind of stumbled on that and then I did the podcast and began that, then the meaning came after. Bill Gasiamis 1:17:43 But at the beginning, the helping came from just attending the Stroke Foundation, Smart Stroke, Safe stroke speakers, course, that I did to learn how to present for them. And then we did a lot of awareness raising campaigns and all that kind of stuff to different community groups, corporations, a whole bunch of places. And it gave me, you kind of turned this horrible thing that happened to me into, man, I could actually turn this into something helpful, meaningful, purposeful and supportive of other people. From Survivor to Mentor: Evolving Journey Post-Stroke Bill Gasiamis 1:18:27 That’s not so I’m not going to decrease the amount of time that I’m going to be feeling sorry for myself. You know about what happened to me? Because it’s about other people now, right? Yeah. So what about you? Where are you with that type of thing. Brooke Parsons 1:18:45 Pre-stroke, I wanted to be a music teacher. So that was pre-stroke. I knew at the age of 13 what I wanted to be when I grew up, and then at the age of 18, when I was looking at uni subjects and uni choices and courses and what I was doing in BCE and where I wanted to go after school, I really had no idea, because I knew I couldn’t become that music teacher I’d so desperately hung on to throughout the first five years post stroke, that was good. Brooke Parsons 1:19:26 Mind you, hanging on to that idea for five years post stroke, in those very early initial days, gave me a purpose to keep going, to get up, to try again. Get up after every fall, and now I’m going to be okay from that, I would say luck’s been involved, because I was asked by the Children’s Hospital to be a chapter in a novel written by Neil Mitchell. Who was a3 AW radio presenter, and then somebody at the Stroke Foundation read that chapter and said ‘We’ve gotta get her as an ambassador. And then the CEO at the time, Erin Layla, nominated me to be on Julie B’s project. Brooke Parsons 1:20:22 And so it’s sort of gone around and around in a circle. Now you may have noticed Queensland in Adelaide, I often take a back seat. And by that, I mean I’ll sit there and I’ll be amongst everyone. But if you said to me ‘Oh, Brooke, I don’t agree with that, or I do agree with that, and for these reasons, I’d say ‘Bill, please, say it, they’re really good points, because you’ve told me, right? You might just need that little bit of a push. For me, it’s about mentoring and bringing everyone else up through the ranks. Now, to do what I do. Bill Gasiamis 1:21:09 I love that. That’s so great. So it’s kind of evolved, and it still involves your original participation, helping other people, be they researchers. As a result of helping researchers, you help stroke survivors, that’s all still there, and now it’s about mentoring other stroke survivors to sort of step in and play a role. I love that. Brooke Parsons 1:21:30 Yeah, so I think I’ve always been giving. I think there’s always been an element of leadership there. I’m one of these people that always seems to know what’s going on, even when I don’t want to know what’s going on, like around places and things and all of that’s well and good. I’ll always have a little bit of a burning desire in me, I guess, to be a leader in one way, shape or form. And many would probably say I am a leader in what I do. Bill Gasiamis 1:22:07 Yeah, there’s definitely a leadership quality there that is seems to come natural to you. Brooke Parsons 1:22:17 I think, yes, yeah. But my purpose isn’t so much about me or doing what I do to fix me, because the cold truth is that’s never going to happen. But a deformed arm, that’s the way that’s going to be, got deformed legs. Sadly, that’s the way they’re going to be. But those that know me, those that have relationships in whatever form, with me, that’s because they know Brooke, the Brooke who lights up her room when she enters. Brooke Parsons 1:22:58 The Brooke who has a sparkle in her eye every time she smiles, and the Brooke who will give her absolute most even on her worst day, just to get through the day. That’s why I do what I do. I think that’s what gives me purpose, and it keeps me going. Bill Gasiamis 1:23:28 Yeah, that’s good to have something to keep everybody going. Anybody going? I as we come to the end of the episode and wrap up, I ask stroke survivors these three questions at the end of my episode, which I’ll ask you. But usually the stroke survivors who I ask are very new to stroke. When I’m saying very new. It didn’t happen 30 years ago. It happened say, you know, two months ago, six months ago, a year ago, they’re still in that very early sort of part of their journey. Embracing Change: The Transformation After Stroke Bill Gasiamis 1:24:02 And the first question goes, what is the hardest thing about stroke for you? So I’ll be very interested in in that perspective from somebody who’s been living with stroke the majority of her life. Brooke Parsons 1:24:20 Do the hardest thing for me was accepting the fact I lost old Brooke. However, I gained a Brooke who is fierce, who is stubborn, who can be a loud mouth and still have most of the qualities that she had beforehand. So what I’m describing to you is, I can still be a pain in the bum. Bill Gasiamis 1:24:48 So, you can be old Brooke. And then there’s this new version as well that’s also still emerged and taken the old Brooke with her. Brooke Parsons 1:25:05 Absolutely, I think, you know, I could say I’m the old Brooke, but I’d be denying myself the fact that I’m in a chair now, and that I’ve had a stroke and that I’ve got limbs as much as I want them to work, don’t work. So that’s what I mean by old Brooke had limbs. Used to run around on a Saturday morning in a netball skirt and play goal shooter and then come home and study for six hours. New Brooke can’t do that, and that’s okay, but new Brooke is just as powerful as the old Brooke was. She’s just had to find those qualities that make her equally, if not, better. Bill Gasiamis 1:25:56 More powerful. I love that. So then the next question goes, what has stroke taught you? Brooke Parsons 1:26:10 What has stroke taught me? That’s a really good question. I this is going to sound weird, but we are all human, so therefore we all have the right to have good days and bad days for people like yourself, Bill and for like myself, despite being in a chair, our stroke is the burden that we carry every single day. So for example, I might say to you ‘Hey, let’s catch up and do lunch. And you’d say ‘Yeah, I’m just going to make a salad sandwich. I don’t know. I’m just making this up, by the way, the way you make a salad sandwich would be completely different to me. Brooke Parsons 1:27:14 Ringing the support workers downstairs going ‘Hey, can you come up and make Bill and I solid sandwiches. Although it’s done differently because our abilities are different, we’re still people, and we have every right to express how we’re feeling and our opinions and be accepted and loved just as much as the next person. Does that make sense at all? Bill Gasiamis 1:27:51 It does. Do you feel that society, this is such a general question, and it probably deserves a general answer and nothing specific. But do you feel that society still overlooks the needs of people that are different because of, say, their appearance, their disability? Does that still happen? Do you get a sense that I think overlooked, etc happens. Brooke Parsons 1:28:24 I don’t know if it’s overlooked. I think we as individuals, though, need to find an acceptance that’s okay for us to go. This was the old me, this is the new me, and I’m still equally as important, and I’m still okay. Bill Gasiamis 1:28:47 So it’s a personal thing to develop. Brooke Parsons 1:28:50 I think so because, you know, it would be fair for me to say, people see me in a wheelchair, and they must go ‘Oh, poor bro, she, you know, she’s in a chair, her life must be so terribly hard. But did they see me get up and speak in Queensland? No, have they seen the process of me being in a novel? Absolutely not, but a person who’s been in a novel will completely understand the process of being in a novel. So I just accept how you do things may be different to how I do things. Yes, we’ve both had strokes, but they’re like our invisible friend that just tag along for the journey. Bill Gasiamis 1:29:46 It’s about how you turn up, isn’t it? It’s about how we turn up to a place, and how we put ourselves out there, and the vibe that we’re giving off, as to how people are going to interact with us and classic example I always go back to this guy is Stephen Hawking, yes, in all of his challenges and disabilities and inabilities and all that stuff, he was still when he turned up, he paid attention. You need to listen to what he had to say about the particular topic that he was talking about. And it did make it made no difference. Bill Gasiamis 1:30:20 He was the expert in his field, no matter what his condition was like, looked like, you know, nothing. So that’s, I think, where you’re getting it is like, it’s how we turn up, regardless of what we’ve been through or what we’re going through, absolutely. I like it. And then the last question is, and we may have already kind of gone over it a little bit, it’s like, what I don’t like the word advice particularly, but it’s like, what would you tell other stroke survivors? Brooke Parsons – From ‘I Can’t’ to ‘I Can Bill Gasiamis 1:30:52 Usually, they’re going through it early on, they just started their journey. Some of them might be, you know, a few years in, they’re still grappling with all of the changes, the differences can What do you tell them? What do you tell other strokes survivors who are listening? Brooke Parsons 1:31:08 Yeah. Look, I think this is a really powerful question, because if I recall back those early days, and I’m sure we all can, in one way, shape or form, we hear the word can’t a lot. So the first thing I say to stroke survivors is, well, let’s drop the T and it’s I can. And if you can, you will find a way to do it. And an example of that is in 2023 I went to the World Stroke Congress in Toronto, where I spoke, and I said to two of my colleagues who happen to be physios, let’s go and climb the CN Tower, and let’s do the sky edge walk. Brooke Parsons 1:32:07 Now these two physios clearly thought that I wouldn’t have thought of any dare devil activity, and that would be all safe because Brooke’s mentioned it. So they went ‘Yeah, yeah, no worries. So I paid for the three of us to do it. When we got there, they went ‘Holy Lord whose idea was this again? And I go ‘Oh, very happily. And then we got out onto the sky edge walk, and one of them hung over the edge and went ‘Yeah, I’m free, this is lovely. Another one would barely put a toe over the edge. But then it came to me. Brooke Parsons 1:32:56 Here I am in the wheelchair, and I’m hanging over the edge, well and truly going, I’m free. This is wonderful. I don’t want to get down from here. That would have been very easy for me to turn around and go, no, I’m not doing that. But I didn’t, because who knows if I’ll get back to Canada. Hopefully I will, but it was something, then that evening, I sent the little clip to Julie B said ‘The only thing missing was you. And then it became the talk of the conference. Everybody knew that there was a girl in a wheelchair who did the CN tower climb. Bill Gasiamis 1:33:47 Yeah. Brooke Parsons 1:33:49 And that would be so easy to just sit back and go, I would like to have done that, but I’m in a chair. Bill Gasiamis 1:33:56 I can’t there’s, I suppose, what you’re getting through is, there has to be, like, a willingness to participate in life. And it’s pretty obvious that when you do like, big things can come of it. I mean, you represented stroke survivors at a conference in Canada from Australia. That’s huge, and that’s possible, right? That’s, I’m not saying that the goal should be to be a stroke survivor who specs on a on a international stage, maybe, but it doesn’t have to be that. But that’s what I get from what you just said. Resilience and Advocacy Bill Gasiamis 1:34:00 So by participating in life and doing the scary things, one of them is, you know, looking over the edge of a massive drop, it kind of is a similar thing, to participate and then end up on a stage, which is a big thing in another country, doing a presentation. I see why you’ve achieved so much. It’s because of that willingness to do scare you well, maybe calculated, risky thing, but scary nonetheless. Brooke Parsons 1:35:06 Yeah, I think it’s about dropping the T and believing you can when you can, believe you can anything is possible, because you’re willing to go to all lengths to make it, in itself is anybody can choose to if they want. Bill Gasiamis 1:35:31 On that note, thank you so much for joining me on the podcast. I really enjoyed our chat, and it’s great to connect with you again, since we connected in the conferences, which always happens in very small bursts, because everyone’s rushing everywhere, and no one really has time, so much time. So it’s been lovely. Thank you. Brooke Parsons 1:35:54 Thank you, Bill. Thank you so much, and I’m always around. Bill Gasiamis 1:35:59 Well, that brings us to the end of this inspiring episode with Brooke from surviving a stroke at just 13 years old to becoming a fierce advocate and lived experience consultant, Brooke’s story is a testament to resilience, advocacy and the power of community. Her work is shaping the future of stroke recovery for survivors everywhere. If today’s conversation resonated with you, I’d love to hear from you. Please like, comment and subscribe on YouTube, if you’re listening on Spotify or iTunes, leaving a five star rating or review would be amazing. Bill Gasiamis 1:36:38 It helps others discover the podcast and join the growing community. Remember to check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened , available on Amazon or at recoveryafterstroke.com/book , and if you’d like to support the podcast directly, please visit patreon.com/recoveryafterstoke . Thank you for being here and listening and making this podcast part of your recovery journey. I’ll see you in the next episode. Intro 1:37:08 Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed all content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for information or purposes only and is largely based on the personal experience of Bill Gasiamis. Intro 1:37:38 The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. 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Recovery After Stroke

1
You Can’t Change the Past: How Mike Kent Turned a Hemorrhagic Stroke into Growth 1:14:53

10 weeks назад1:14:53

1:14:53

Acceptance: Hemorrhagic Stroke Journey and Path to Recovery Life often takes unexpected turns, leaving us grappling with challenges we never anticipated. For those who have experienced a hemorrhagic stroke, the journey to recovery can feel overwhelming and uncertain. One of the most crucial yet challenging steps in this journey is acceptance . Acceptance doesn’t mean giving up; it’s about acknowledging where you are, finding peace with what has happened, and embracing the possibilities that lie ahead. The Reality of a Hemorrhagic Stroke A hemorrhagic stroke, caused by bleeding in the brain, is a life-altering event that can bring physical, emotional, and psychological hurdles. Survivors often face paralysis, speech difficulties, memory challenges, and other long-term effects. But beyond the physical recovery, there’s a deeper, often less-discussed journey: learning to accept the “new normal” after stroke. The sudden nature of a stroke can feel like the rug has been pulled out from under you. You might wrestle with questions like, “Why did this happen to me?” or “Will life ever feel normal again?” While these thoughts are natural, the key to moving forward lies in reframing the narrative and shifting focus from what’s lost to what remains. What Acceptance Truly Means Acceptance is not about resigning yourself to a life of limitation. Instead, it’s about recognizing the present moment for what it is. It’s about letting go of regrets about the past and instead channeling your energy into what you can control now. For many stroke survivors, the inability to undo past decisions—such as elective surgeries or lifestyle choices—can weigh heavily. But as difficult as it may seem, accepting that the past cannot be changed is the first step toward reclaiming your power. By focusing on what can be done today, survivors can begin to rebuild their lives. Steps Toward Acceptance Acknowledge Your Feelings It’s okay to feel anger, sadness, or frustration. Give yourself permission to process these emotions, but don’t let them define you. Journaling, therapy, or talking with a trusted friend can help release these feelings. Focus on the Present The present is the only moment we truly have. Take small, actionable steps toward recovery, whether that’s attending therapy sessions, practicing mindfulness, or simply celebrating small victories like tying a shoelace or walking a few extra steps. Redefine Your Identity A stroke may change what you can do physically, but it doesn’t change who you are at your core. Embrace the parts of yourself that remain strong and resilient, and allow this new chapter to help you grow. Seek Support Connecting with others who understand your journey can be incredibly empowering. Whether it’s joining a support group, working with a recovery coach, or engaging with online communities, surrounding yourself with people who “get it” can make the road feel less lonely. Finding Strength in the Journey Every stroke survivor’s journey is unique, but one common thread is the incredible strength it takes to move forward. Acceptance doesn’t happen overnight; it’s a process that unfolds gradually. The key is to take it one day at a time, focusing on progress over perfection. As Mike Kent, a hemorrhagic stroke survivor, shared in a recent episode of the Recovery After Stroke Podcast : “I’ve learned to realize you don’t need to answer the question of ‘why.’ You just need to move on from it, resource yourself, and bounce forward.” Motivational Takeaway While the past cannot be changed, the future is still unwritten. Accepting your circumstances is not the end—it’s the beginning of a new chapter. It’s an opportunity to find strength you didn’t know you had, to rebuild, and to inspire others through your courage. If you’re on this journey or supporting someone who is, remember that every small step forward counts. Your story is a testament to resilience and the power of the human spirit. Resources for Your Recovery Explore my book : The Unexpected Way That a Stroke Became the Best Thing That Happened , available on Amazon or directly from recoveryafterstroke.com/book . Join the community : Connect with others and access resources by supporting the podcast on Patreon. Acceptance is a journey, but it’s also a destination where hope, growth, and possibility await. Keep moving forward—you are not alone. Acceptance: Mike Kent’s Hemorrhagic Stroke Journey and Path to Recovery You can’t change the past, but Mike Kent’s hemorrhagic stroke recovery shows how to embrace growth and resilience to transform the future. Facebook Instagram Empowering Disability Highlights: 00:00 Mike Kent’s Introduction and Initial Injury 03:59 Waking Up and Realizing the Impact 11:53 Dealing With Acceptance 18:17 The Beauty Of Enlightenment 28:17 Accepting Love In The Form Of Help 38:40 The Path Towards Post-Traumatic Growth 40:17 What Is Post-Traumatic Growth? 53:33 Being Your Own Critic 1:00:16 Becoming A Recovery Coach 1:06:02 The Hardest Thing About The Stroke 1:09:47 What I’ve Learnt From The Stroke 1:12:09 Advice From A Stroke Survivor Transcript: Mike Kent’s Introduction and Initial Injury Bill Gasiamis 0:00 Hello everyone. Today we have an incredible guest, Mike Kent joining us, whose story is nothing short of remarkable. He went from experiencing a life-altering hemorrhagic stroke caused by a routine medical procedure to transforming his life and becoming a source of inspiration for others. His journey is a testament to resilience, the power of acceptance and the incredible strength of the human spirit. You won’t want to miss the lessons Mike shares about embracing the present moment and turning adversity into a platform for growth. Bill Gasiamis 0:39 Before we dive in. I want to remind you about my book The Unexpected Way That A Stroke Became The Best Thing That Happened. It is available on Amazon or directly from my website, at recoveryafterstroke.com/book , if you’re looking for practical tips and inspirational stories to guide your recovery or support a loved one, this book is for you. Now, let’s jump into this incredible conversation with Mike Kent. Bill Gasiamis 1:10 Mike Kent, welcome to the podcast. Mike Kent 1:14 Thank you, Bill. Lovely to be here. Thank you very much. Bill Gasiamis 1:17 Tell me a little bit about what happened to you. Mike Kent 1:18 Well, what happened to me? Well, let’s go back five years to May or maybe April 2019 and I was coming back from Boston, I just managed to land my dream job working in customer success, which is a kind of a new field for technology companies. And I was coming back from interviews, and had successfully finished the interviews there and got off of the job, came back for a routine operation in France, which is where I live. And there I went into the hospital, and the number two neurosurgeon in France, as is the norm, gave the task to a stage which is a trainee. Mike Kent 2:19 And that’s totally normal, and the trainee like they’re looking for cartilage to put in my nose, just at the top of thing. And it was a cosmetic operation. It wasn’t even necessary, and they drilled into put me in under, into sleep mode, and drilled into my head, got the cartilage and came out and sold it all up, unbeknownst to everyone, that trainee had actually drilled too far and had drilled into my brain and had caused a hemorrhagic bleed that no one was aware of in my head. And so I went into the what they call is the wake up room after the post operation, and I didn’t wake up. Mike Kent 3:09 I just carried on sleeping, and the night duty doctor then decided to think it’s very odd that Mr. Kent’s not awake. He should be awake now, at least, should be moving, and he’s not moving at all. And so they put me into an artificial coma, and it checked into with a scan what was happening in my head, and they realized that I was bleeding, bleeding into my through my brain, and I had one and a half hours to go so that sorry, I just, it’s quite emotional to recount that kind of story. I didn’t realize that, and, yeah, it’s like I was one and a half hours from touching the other side. Waking Up and Realizing the Impact Mike Kent 3:59 So that doctor was absolute is worth his weight in gold, because he immediately put me into that artificial coma. And when you’re in an artificial coma I’m told you’re not, kind of like, forced to wake up. You wake up when you can, which normally is like a few hours or one or two, three days later. I woke up eight weeks later. And when I woke up, I was looking around, and I saw very blurred, I remember seeing my twin brother, and I kinda said ‘What’s my twin brother doing in France? You know, he shouldn’t be. He lives in LA. Mike Kent 4:42 And what’s my mother doing here? She lives in England, you know. So it’s all bizarre. So then I just rolled over, and I fell out of the bed because I couldn’t move the whole of my right side. And it was then that I realized that, the whole of my right side was hemiplegic, which is, it’s a stroke, it’s just able to move the right side. And I started bursting into tears. It’s a hugely emotive and soul destroying and then gradually, kind of, like, dawned on me that I had come from landing my dream job, like, literally two hours ago, right in my time, right, and now I was in a hospital. Mike Kent 5:38 And I couldn’t get up off the floor. So what the hell is going on here? And I’m a marketeer, I’m somebody who has always been interested in making the best possible thing that I can for whatever product is, whatever product that I’m marketing, right, whether it’s drinks or whether it’s liquid soap or whatever. So we’re always aiming for perfection, we’re always aiming for that golden nugget, and we didn’t to be actually sitting or lying on the floor and crying and not understanding what the hell is going on. Mike Kent 6:26 Is my whole world is just collapsing right in front of me, and from then, I got lifted up by the nurses on top. I won’t go into all that, but the rest of that story is that I actually was so depressed that I went into a depression, and I even tried to end my life. But the one thing that saved me was that I want to know what it would be like when I was not here, and I would never know if I was not here. Mike Kent 7:03 So that was, I was kind of like going at it round of my head ‘Well, Mike, you do this, you know. So I decided not to go ahead with it. I got given a book called The Awakening by Jeff Thomas, and that was from my brother. And that’s where it all just started to resonate with me in that I live now in the present moment. Everything I do is in the present moment and that is what saved me, really, and that’s where I am now. Bill Gasiamis 7:38 It’s quite a contrast, one minute you’re fully involved in your life and going about business, dream job, all of that kind of stuff. Next minute you wake up and you’re gone, everything that you thought was the way that things were is not like that anymore. And now people people struggle to, you know, kind of have this idea of old age for some people. And it’s just some people describe as like a steady decline, and then over a long period of time, and then you get to 80 or 90, and, you know, some people are fitting well and a little bit less capable, perhaps. Bill Gasiamis 8:25 And you know that coordination has gone a little bit or things are different, they’ve changed, but there’s this time difference that you’ve had to be able to grapple with the slow change and the things that you don’t do anymore. You can’t do anymore have type been removed from your abilities, right? So you kind of have this big adjustment period and that you can have your conversations with people about it, you can joke about it. Bill Gasiamis 8:56 Can laugh but it can get annoyed about it, you can get counseling for it. You can do all these things, then a stroke is not like that. It doesn’t give you the time to deal with anything that it leaves you with when you wake up. And it’s impossible for anyone to be able to just grapple with that immediately and be okay with it. Mike Kent 9:20 Yep, absolutely. The difference, the thing is that a stroke it’s not something it’s not in a moment. A stroke is, It’s a journey. It’s a long road of whatever you want to make it right, and it’s how you actually deal with the hardship, trauma, the difficulty, whatever word you would like to use, it is really up to you and your ability to actually you. We only have one life, whatever you want to believe that we are conscious of one life. So I want to make the best. I’ve always have wanted to make the best of my life. Mike Kent 10:11 And I think being a twin and 20 minutes makes a hell of a difference for me. I’m the older one, but we are naturally competitive, right, but not competitive, as in, you know, really fighting and stuff. We’re just really driven, and so when you’re presented with a situation that you cannot understand and you cannot even begin to fathom or realize what on earth is going on. Mike Kent 10:42 You ask yourself questions over and over again, and there’ll come a time when you actually want to get those answers, and you’ll start making an answer because you are just continuing saying ‘I don’t accept this, I don’t accept what I am, this is not fair, okay, I am not a victim. Bill Gasiamis 11:01 Just jumping in with a quick message. I hope you’re enjoying this conversation with Mike Kent as much as I am. If this podcast has been helpful to your recovery journey, I’d like to invite you to support the show on Patreon. Since the very beginning, I’ve been covering all the costs of producing this podcast myself and your support can help me continue to bring these valuable stories and resources to you and others in the stroke recovery community. Bill Gasiamis 11:31 By becoming a Patreon supporter, you’ll be joining a community that’s passionate about stroke recovery and helping others feel less alone. Visit patreon.com/recoveryafterstroke to learn more. Every bit counts, and your support makes a real difference. Now let’s get back to Mike’s inspiring story. Dealing With Acceptance Mike Kent 11:53 I am Mike, right. I am unique, we are all unique. We’re given whatever cards we’re given and dealt with, and we deal with them as best as we possibly can, these cards I’ve been dealt. I have to accept that I am like this, I am this way, but I don’t want to be a victim. I will do something about it, and so I always say to people that I actually want to concentrate on is what I have and not what I don’t have, yeah, and that’s what has been, has inspired me all along. And I’ve got this kind of get up and go attitude. Mike Kent 12:35 I think that I’ve always seen the glasses half full, and kind of been a positive kind of guy. Luckily, I think that, you know, the US has ordained all this for me, and that there is a reason why all of this happened, and I’m now actually a recovery coach to people who are in difficulties, whether they are differently abled different, or whether they are disabled, or whether even when they are able bodied, but they are suffering from depression or suffering from whatever disorder or illness that they have. Mike Kent 13:19 I’m just so I’ve got so much confidence right to share and give and help people, that it’s a super wonderful journey that I’m on now, and that’s okay. It wasn’t okay five years ago, but it’s okay, because I’m meeting people that I’ve I would never have met in my life before, and, yeah, I’d actually even think that they’re on a different side of the street. I would actually walk on a different path to these people. Does that make sense? Bill Gasiamis 13:59 Well, you were an asshole. Were you? Mike Kent 14:01 Completely, completely, yeah. And I don’t know why I might say that, because it’s just a different lifestyle. I was arrogant. I was cocky and stuff, you know, now I’m just humble and just want to serve and just want to get I don’t give back because I don’t like the idea of back, that means going backwards. I don’t want to go backwards, I go forward, so I bounce forward and just doing it, do as whatever I can, as well as I can. Bill Gasiamis 14:32 I love your truth, the truth. And I suppose we’re not all we, perhaps we act like ourselves, but we’re not all assholes. Deep down. It’s just that this circumstances make you kind of steer away from your true essence, and then something has to happen so that you can come back to your true essence. That’s how I feel, because I was not the coolest guy. Mike Kent 15:01 Were you an asshole then? Bill Gasiamis 15:02 I was, a little bit. Earlier on in my life, I was terrible at school, I was a pain in the ass to everybody. And then later on, I kind of took that into my adult life, and one on one, we’d have a good time. We’d get along, you know, but I used to have it. I used to, like, if somebody, I thought, if I felt somebody wronged me, that person just never heard the end of it. They were just, it was a vendetta that I had to make sure that I sit, I saw out to the end. And it wasn’t, you know, it wasn’t stalking or illegal stuff. Bill Gasiamis 15:45 It was just I would be rude and I would be blunt and I’d be short, and I wouldn’t give all the time a day I’m obnoxious, and I would just make their life difficult because I thought that they deserved it, which is actually completely, totally wrong, because I never spent one moment going. I wonder what’s happening in that person’s life today, for that person to behave the way that they did to me that I don’t know that I should give them a break about, and that was my turning point, right? And I share this story a lot. Bill Gasiamis 16:19 When I saw people in a wheelchair, I just imagined they were sitting down. As bizarre as that sounds, I never connected it to trauma, illness, injury, any of that stuff. And then when I spent like, four or five weeks in a wheelchair because I couldn’t walk, I’m like ‘What an idiot you are, how could you have thought that this is an easy gig? Just sitting in a chair, pushing yourself around is an easy gig. Oh, my God, I’m dealing with all this stuff I can’t walk and all this stuff that the emotional storm, and it’s like ‘Well, you needed to be like this Bill. Bill Gasiamis 16:59 So that you can become a more compassionate person because you acted compassionately, or you pretended you were you, you were compassionate, but you never acted compassionately when it mattered. Mike Kent 17:14 I remember going to the rehab place, and I was in an ambulance, and there were these three guys who were all in wheelchairs just outside the front door, all smoking away. And I come in on a stretch, and I’m going, like, the first of all, I’m going, Why the hell are they smoking? But God’s sake, don’t smoke. You’re in a hospital thing, and you’re ruining your health, you’re doing all this stuff, it’s like God’s sake. Mike Kent 17:47 And remember that even to this day. And that was their release. That was their only way that they could actually get to be with themselves without the have the trauma of the of realizing they actually were handicapped or disabled or in a difficult situation. Bill Gasiamis 18:12 And they were doing that the day before they were in hospital, as if they’re going to stop today. The Beauty Of Enlightenment Mike Kent 18:17 Exactly, yeah. And you never think about that, you never think, you know, I think about my story when I was, you know, from Boston to the hospital, etc, you know, I never think about before. Anyway, what was that guy doing in the wheelchair the day before, right? He got in a wheelchair. What was his life like? Never occurred to me, just like you never, but I don’t think it does to many people actually. I think the the beauty of all this, is that our ability to actually reflect and take that on board makes us a bigger, better, stronger person. Mike Kent 18:58 Right to be able to serve, to be able to to help others and and spread the word the people that where I live in Paris, has been recently the Olympics. And I went to see the Paralympics, and I went, I was in the swimming arena, and that was when the Brazilian guy who has no arms and very short legs. So basically quadriplegic and has nothing there. He won the gold medal. He beat a guy who had two arms and two legs into silver. I mean, it’s nuts, right? And he swims like it. And then turns on his back, and it’s like, it’s incredible. Mike Kent 19:46 And then when he gets out of the pool, he is turning around and he’s clapping the eighth person, the eighth where he’s not clapping, but he’s going like this. He’s clapping the eighth person, encouraging, because they are all there to not to show off or to show how good they are, whatever. They’re just participants, that’s it. It’s incredible, and then the way, and they all go round and parading their medals, and it’s that three medalists all together. It’s not one, and then the next one, and then the next one, it’s a huge difference compared to the actual Olympics. Mike Kent 19:49 Which is the epitome of individual pursuit. And then exactly the whole psychology is to outwit, outperform your competitor. Mike Kent 20:44 Yes, yeah. And there it was and then the other. The other thing I noticed was that the crowd were so in tune with the athletes or with the swimmers, that there was such unity between the crowd and the and the swimmers and harmony. And that was just it, since she was just thinking about it, the beauty of it all, you know, and it makes it made a very, very incredible experience. And as really, it’s profoundly, taken me and helped me on my journey. Bill Gasiamis 21:27 Yeah, sometimes you go to a marathon. And let me just qualify this, when I say, go to a marathon, you turn up, you don’t race, because I don’t do marathons. And I never, I never, would. And then there’s, you know, there’s the event which everyone starts off in, and then there’s the event that other people do five kilometers or 10 kilometers, and they might have a physical disability or a mental impairment or whatever, no matter what. And then you just, and then it’s just like the marathons, it’s not even about the marathon. Bill Gasiamis 21:33 It’s about actually doing all the things that you had to do to get to the marathon. Mike Kent 22:07 Yeah, exactly. Bill Gasiamis 22:08 Overcome the injury, get out of hospital, rehabilitate yourself, perhaps train, learn to walk. You know, whatever it is, it’s all about that stuff. The marathon is just like, I feel like it’s just the icing on the cake. A friend of mine, friend of mine who’s able bodied, ran 100 kilometers about three weeks ago, two weeks ago, I was there with him. I was supporting him at every checkpoint, food, clothes, whatever he needed, a little bit of chat, little bit of motivation. Bill Gasiamis 22:44 And we spoke about it yesterday, nearly two weeks later, and he just hasn’t, still been able to grasp the enormity of what he did. He hasn’t been able to comprehend it and for him, he’s able bodied, but the fact that he did 100 kilometers in 16 hours is still something that he had to find, you know, reach into places he’s never reached before, to be able to actually get over the line and do it. And I think he hasn’t been able to get his head around that it actually wasn’t the run, it was all the stuff that he’s done before the run in his 49 years, to get to the starting line and go. Bill Gasiamis 23:33 I’m going and then to go, I’m going to go to the end. It’s a big achievement, but what got him there is the even bigger achievement in my mind, because I can’t even contemplate being at the start line of one of those events that I’m running. Yeah, I’ve got to get I’m not even there. I haven’t even done that journey yet, and I’m never going to do it. I’m not going to run 100 kilometers, because I don’t think I’ve got what it takes to do the work that gets you to the start line, because there’s a lot of work. Bill Gasiamis 24:07 He trained for months and months and months. And it’s like, that’s kind of how I see this whole these guys that get to the Paralympics or become gold medalists in a para-sport or whatever. And it’s like ‘Man, forget the knighthood, so to speak, the knighting. It’s everything else that we don’t see, that’s the amazing part. Mike Kent 24:32 They interviewed one of the swimmers, because every night on French TV they brought in the the medalists and the people of the day, and it was so well done. And these people just were so proud of what they would what they’d achieved. And you get them and said ‘Okay, so that’s your that’s the highlight of your career, right? So, what to get there, you know, what other major highlights Have you had? And the guy says ‘Well, actually, you know, to get here was, there’s a lot of ups and downs actually. Mike Kent 25:11 Well, mostly downs actually, in actual fact, it was all downs, you know, we, we don’t see any of that we don’t see that, that had to get up at four o’clock in the morning and goes do it every single day, and on top of that, they are bringing all of their baggage, should we say, of who they are and their disability with them, and then fighting that, and then on top of that, fighting to try and just get to a race and or to a performance level that they’re being been asked to get to, and that’s not even getting into the Olympics, that’s just qualifying for them. Mike Kent 25:57 You know, it’s fundamental. It really and that’s, I think the people that I have met, and you probably met a lot more than I have, but there’s a lot of guts and driven and determination and grit In disability, and frankly, there’s a lot of positivity. A lot of people who have gone not just the extra mile, but the extra life, sort of 10 miles or whatever, and really, really just going for it. And when they look back, they realize what they have actually achieved is phenomenal. Bill Gasiamis 26:39 Yeah, and that’s what I want to really emphasize here. The key point is that we’re talking about people reaching the Olympics, competing a massive achievement, winning massive achievement. But somebody else’s Olympics might be going back to work. Yes, and that’s the thing, right? It might be driving, it might be becoming going home, getting a job, exactly, yeah, just going home. It could be anything like that. Bill Gasiamis 27:08 So what I’m trying to say is, like, Mike and I, we see you, we don’t expect you to be gold medalists or run 100 kilometers or go to an Olympics. What we’re talking about is what’s possible. But also, you know, somebody else’s Olympics might not look like attending France. Mike Kent 27:28 Yeah and they’re all there. All their Olympics are their own personal journeys and their own personal endeavors within their own way of living, and that’s absolutely brilliant in itself, inspiring in itself. Totally get that. Bill Gasiamis 27:50 I see a lot of people get a lot of satisfaction, and have been able to tie their shoelaces again, even with one arm, learning how to do that. Or I see a lot of people getting, you know, really moved by being able to comb the hair of their daughter, you know, stuff like that. That journey to be able to get there, to do that might have taken them years. And it’s like, never give up. Keep going. Acceptance Of Love In The Form Of Help Mike Kent 28:17 It’s a very interesting point that because my son and my daughter, have accepted how I am because I’m stubborn, so I like to do things myself only because I don’t want to have handouts kind of thing, right? But I’ve learned to actually accept help now, and that it’s important to match. And people, it’s not that they’re not doing it because they are what, because they are sorry for you. They’re doing it out of love, right? They want to help you, right? And that’s a big mindset change that I had to go through. Mike Kent 28:17 And now, you know, you talk about the tying of the shoelaces. Yeah, I can’t tie my shoelaces, and so I get my son to tie them, and then I just slip the shoes. I just slip on and off, you know, each time. And that’s okay, that’s we call it a win, win. He doesn’t get to do it. He doesn’t need to do it all the time. I don’t need to do it all the time, but he’s done it. He’s helped me with what tiny shoelace, but I’m doing it every day because I can slip the shoes on and off. But it’s little things, and it is always little things. Bill Gasiamis 29:36 That’s right, it’s a compromise that you had to make, that you had to be okay with receiving help, which is a massive journey in itself. Mike Kent 29:46 Yes. Bill Gasiamis 29:47 How could that be a thing that we can’t do? How can that even be a thing that we can’t accept? I don’t get that at all. It’s so weird. Mike Kent 29:57 I wonder why it. Cultural or what it is, but for me, I have completely changed. I really, really have completely changed maybe that I’m a much better person for it, but that still doesn’t take away that the the first three years, I was stubborn, but now I think maybe it’s age, maybe it’s just I’m loving the world now in a different way, and loving the world. You know, I actually walk a little bit slower to get to wherever I want to get to, but I get to see the world, I get to see the leaves. Mike Kent 30:45 I get to see the leaves and the color we’re in autumn or fall, and we get to see the different colors of the leaves. And I get to actually experience that because I’m walking slower, and therefore I’m not rushing to the next place. And then you start realizing ‘Okay, I love what I’m seeing, this is really good. So therefore I’m just walking around with a smile. You know, they call me Mr. Bonjour, which is Mr. Hello. I just keep saying hello to everyone. Mike Kent 31:12 But that’s because I give everyone the time of day. And so if my son comes to me and says ‘Papa, you need to do your shoelace up. Okay, can you help me please, you know? Because it’s all part of the spirit of just enjoying the moment that that I’m in, which is the life I’m in. Bill Gasiamis 31:32 Yeah, I find, I do that does make sense. A lot of people would resonate with that. I find the similar things where I could go, you know, and just spend time now, having been to Paris and and understanding of the cafe culture there, and what you do when you go to a cafe, you just sit and you just observe and you watch them. I bring that, I go there, and I bring that back to Australia and Melbourne, where I go. And there’s a beautiful place that I love in in our central business district, our city, and I’ll just sit there for sometimes three, four hours with my wife, other times on my own. Bill Gasiamis 32:07 And I’ll just do that, I’ll just observe people, and then people will come and they’ll do their thing. And often people who are looking for some spare change, or for whatever is, will come up, and they’re really interesting conversations, which I never had before with people like that. And it’s like they’re going to get a few coins, because I always go into the central businesses with coins in my pocket, whatever’s lying around the house, just so that I can have something to hand out when they approach. And sometimes there’s a big bunch of them, sometimes there’s a small amount. Bill Gasiamis 32:40 And these guys are struggling even more to get a little bit of money these days, because everyone taps their cards or their phone to pay for things, so they don’t carry as much cash as they used to. So we have converse, I have conversations with these people that I never would have had before that are just enlightening, and forget about the drama and the trauma that’s got them on the street, that’s making them ask for money like you have a conversation with somebody, you just get a completely different perspective and you get the sense of positivity. Bill Gasiamis 33:19 And even in that person’s situation, they still are looking to connect with people, to say thank you, to say ‘Yep, all I’ve got to do is get another 10, 15, $20 and I’ll be able to get a room tonight. And there, they have a goal, they have an outcome. They have something they need to achieve., they’re grateful when they achieve it. They share the same experiences and feelings as us. And there were people that I would have just walked past before. Sure, in a lot of European cities, and even in Australia, there are people who are scamming the system and are doing that. Bill Gasiamis 33:57 Because they know that people will give, and then that they get to take people’s money, and they’re not in that situation, but some people just are in that situation, you can tell, right? And that’s the thing for me, being able to just sit still in one place and just have observed people, and have people come to me and people walk past me, is it just a completely different thing that I never did before. It’s kind of under the banner of people watching, but it’s more. There’s more depth to it than just people watching. Mike Kent 34:31 Yeah, I can agree more, and I take that one step further. It’s like I go swimming every day, and on Tuesdays, there is the disabled people come and swim. And we can only swim from 12 to 2pm, adults, right? And then the disabled people are there from 12:30 to 1:30 and only on in one lane. And I just happen to be in that lane, yeah. And I’m swimming with like, you know, one arm and one half leg, something and, I can swim quite, I can do a kilometer quite easily. Mike Kent 34:57 And then they are all these disabled people there, and I’m encouraging them when I’m there on the end, come on, you go. Got like five strokes to go. You know, one and don’t give up. Don’t go up and like and the smiles of joy and happiness. These guys are actual these men and women are actually experiencing that somebody else is actually encouraging them, other than the meta Nagel, which is the the life card person from the top. Mike Kent 35:44 Who’s actually in the pool and there, and he’s got a problem as well, but we don’t know what it is, but he’s got nice smile, and he just helping and encouraging us is it’s a wonderful kind of unity and ambience and atmosphere to be in. Bill Gasiamis 36:03 Such difference in life, such a small thing, massive positive things. Mike Kent 36:08 And I happened, and I’m going to meet them on next Monday, actually, in talk with a guy. And, you know, little things happen after them, and just be an inspiration, talk to them, and, you know, hang with them and I think that’s so rewarding, and that’s certainly something I would never do before the accident, but now there’s so much pleasure to be got from seeing their smiles. Mike Kent 36:36 And I would say it’s smiling from the inside out, yeah, where they can actually just resonate with you and have that kind of like sunshine that’s just emanating out of them, just by being with you or hearing you, and just them actually understanding that somebody else is in a similar situation and gets it, and that’s so important. Bill Gasiamis 37:08 Isn’t it ridiculous how much life we were missing before? Mike Kent 37:12 Unbelievable, unbelievable, unbelievable. I am here for a reason, I didn’t go to the side because it wasn’t my time. And all of what has happened to me has happened to me for a reason, and so that I can now, I’ve found my passion now and that’s great, but I had to go through all of this to get there, and that’s still hard to stomach. I still hard to to swallow, to be honest. But because I live in the present moment, because of the the accident, and my memory is not quite as good as it was, I’m almost like stuck in Groundhog Day, right? Every day. Mike Kent 38:06 But that’s okay, because that means I’m just living so much in the present. I can’t change the past is what it is, and the future is going to be based on what I’m going to be doing now. And that’s okay with me, and if I need to know it, I will. I’m serendipity happens to me quite a lot, and so I work out where I need to be and what I need to do, just because that’s what happens and that’s that’s okay. The Path Towards Acceptance And Post-Traumatic Growth Bill Gasiamis 38:40 It was traumatic what you went through? Yeah? I mean, definitely traumatic. and see, you’re describing the steps towards post traumatic growth like it’s this concept completely people talk about that was given a term or was given the name post traumatic growth in the late 90s by two researchers. I forget their first names, but Tedeschi and Calhoun, they’re American researchers, and probably not American surnames, but they lived and grew in America, and they came up with the steps, and I was experiencing post traumatic growth through my journey. Bill Gasiamis 39:22 You know, I’m 12 years out now, but through my journey, and not having a word for it, a label for I couldn’t describe to people all the things that we’re discussing now that I had done, achieved, learnt as a result of this stroke, the windows of opportunity, the doors that opened, the podcast, the book, and I didn’t know, I didn’t have this term, right? And then I wrote my book. Bill Gasiamis 39:24 My books all about post-traumatic growth, but I didn’t talk about post-traumatic growth in the book because I hadn’t discovered the work by Tedeschi and Calhoun yet to say ‘Yeah, exactly what I’m talking about guys, because these are the steps, and that’s what I wrote about. And I’ve got the steps on the screen here. Now I’m going to read them to you. Tell me if these resonate right? So you’ve had the trauma, the adversity, and then there’s been an emotional struggle and distress. What Is Post-Traumatic Growth? Bill Gasiamis 40:17 You’ve had the cognitive processing and the reflection time you’ve seemed to have gained acceptance and integration of the whole situation. You definitely have new meaning and perspective in this space. You’ve you’ve seen growth and transformation, and within that growth, there is appreciation for life. There’s a deeper relating to others. There’s realization of more personal inner strength. There’s discovery of new paths and opportunities, new possibilities. And there’s spiritual change, a deeper connection to spiritual spirituality, or a shift in religious beliefs? Mike Kent 41:04 Absolutely, 100% Yeah, it’s and it’s funny, because we’re not adhering to a script. We’re not adhering to a kind of a dogma. This is natural, it’s just happening as you just said, you know. Bill Gasiamis 41:25 But you’ve taken some positive steps right to that it leads to. So there’s some things that you do that other people do that lead to this. Mike Kent 41:38 Yeah, I mean, I have a Facebook group that started with one person, and it’s called impairing disability, but I had such a hard time accepting that I help disabled people right, because I didn’t consider myself disabled. I used to call them disadvantaged or uncertain people, something like that. I can’t remember what it was, I couldn’t use the word this disability till someone said ‘Mike, it’s not about you, it’s about them. What language do they use about themselves? Bingo, of course, it’s disabled because, you know, with and then I change it to disabled than it do differently abled. Mike Kent 42:43 Right? And I thought, then it just be, it’s okay. They say we, I actually help disabled and able bodied people. Now it’s everybody. Isn’t that because, it’s people, exactly just people, right? Because we’re all individuals. We’re all we’re all unique, we’re all different in one way or another, and yet, we all have we’ve got strengths and weaknesses, because that’s part of the human kind of a being that we actually are. We can’t have just good parts without the bad parts, although we would never call them good parts, you know. Bill Gasiamis 43:25 People are injured human being and people are all traumatized. They’re all got some injuries., they’re all got some wounds. Some of them are not visible, right? There’s a lot of invisible disabilities. Mine are all invisible, all the stuff that I live with nobody sees. It’s the pain and the muscles, it’s the left side numbness and all that kind of stuff. And there’s the assumption that you’re, you’re all good now, you know, and it’s like, I’m all good, but I’m still physically, I’m feeling these things, you know. Bill Gasiamis 43:55 At the moment, I’m having a few months of, like, really difficulty with my left hand and my left leg and the way that it all feels, but the level of annoyance that it’s causing, and the suffering and the pain has increased a little bit, but it doesn’t look that way to anybody else. Nobody else can see that. So I can’t describe it, I can’t bring people on board to understand, I can’t do any of that. And that’s people, most of us are going through something that they can’t describe or, you know, know how to explain, or bring you on board with. Bill Gasiamis 44:38 So in the end, it’s like, okay. When I coach people for stroke recovery, there’s some clients that I help on a monthly basis, their caregivers, the people who care for them, are just as traumatized and injured and wounded as the person that they care for. Mike Kent 45:00 Actually caring for, thank you. Bill Gasiamis 44:38 And sometimes they’re both on that call, and other times it’s just a caregiver, and other times it’s just strokes survival. I mean, it’s just about people. In the end, that’s all it is. Bill Gasiamis 45:14 I use the word stroke to resonate with certain group of people because I get them and they get me. So that’s the only reason why I’ve narrowed it to stroke survivors, you know, really. Mike Kent 45:27 It’s the label that I wrote a post about this, but label that the society gives us, because I actually don’t believe that we are all disabled. It’s a society that gives us that label, why? Because they don’t make the handrail on the left hand side going up the stairs, if I can’t hold on to it, they don’t make, they don’t make lifts wide enough to feel will best to fit wheelchairs in because and so ‘Oh, it’s a disabled access or disabled entry? No, I totally disagree with that. So it’s now just about understanding that you mentioned invisible disabilities 80 there was an article that came out in France. Mike Kent 46:16 I think 80% of all disabilities are invisible. And that’s amazing. 80% that means, and you if you actually put that out to the world, you know, that means, like 8 out of 10 people are carrying something, stuff, right, that nobody can actually see. And even if it’s not that number, it just makes you think of the enormity, right? And as you said earlier, that everybody, everyone is carrying their own set of ailments or difficulties and but we don’t get to see them. Bill Gasiamis 46:59 Was ignorance bliss. Mike Kent 47:02 It’s a good question, really good. What is naivety? Is naivety bliss, right? I don’t know which one it, but I think we are better, knowing this, I’m certainly better. I’m not doing I don’t I do on do question it if I would have this level of interest if I hadn’t have had the accident. I have to assume that might not be the case. But I can be just as much as you can be a voice in my little little circle, and that can then emanate, and if we can just have people be able to understand 1% 5% more than they did yesterday, that’s a result, right? Mike Kent 48:02 Because then that would then cascade across everywhere, and then the world we’re better place we’ve got. We’re never going to go from 0 to 100 in a day. We it doesn’t work like that, we put one foot forward each time, and it’s the best foot forward at that particular time, and we can only do the best we can so and I believe, really, that it’s about progress, not perfectionism. That’s what I’ve thought about now. Bill Gasiamis 48:33 Fair enough, you’re never perfect anyway. There’s no such thing as perfect. Mike Kent 48:39 There isn’t. Bill Gasiamis 48:40 Yeah, but there could always be an improvement in anything, and people who try to accomplish perfection really suffer. Mike Kent 48:52 Don’t they? Are you thinking of anyone or people in particular? Bill Gasiamis 49:00 Yeah, I do. I do think of somebody. I mentioned the person, but I’m thinking of somebody in some areas that perfectionism has in later life has become apparent to be an issue for that person, and they’ve been able to understand what, how it gets in the way of, and it’s usually in the space of in academia, like in an academic space. Mike Kent 49:29 That’s interesting, you said in later life. Bill Gasiamis 49:31 So younger, they had the same tendencies. And it was always when trying to deliver something that was going to be reviewed by somebody else critically. And perhaps the reason for the perfection was that they wanted to avoid the discomfort of being told that. That’s not good enough, or you haven’t done enough work, and the confrontation that that might create, and that person is not somebody who particularly enjoys confrontation, so avoids confrontation, not that I enjoy it, but I don’t mind a little bit of confrontation in that. Bill Gasiamis 49:33 So that’s just to give you a bit of an idea of the difference what I mean by that. So then in later life, as that person sort of just matured more and more and done more study and realized that sometimes in academia, the perfectionism like for the last sentence on a document or an article or whatever that could take three hours, and that much effort in that last line was not going to be the outcome wasn’t going to be a better last line, and it wasn’t going to make the difference to the entire document and that at some stage you have to just write the line and hand it in. Mike Kent 51:10 It’s so true, but you can I was in marketing, like fast moving consumer goods or consumer product marketing, whatever, but grocery brands and the amount of time that we would spend on refining a sentence, it’s like, what? Just get it out there, put messy action out there. You know, just no one’s going to notice it. It’s like, they’ll just take the whole message, right? They won’t pick each and every word out, and they all that’s not you shouldn’t put ‘a, you should put ‘an instead of a ‘the, you know, whatever. Bill Gasiamis 51:53 Yeah, the posts that I’ve seen, the most commented on, like in social media, are ones where there is an error in the spelling, and it might be completely and totally obvious, and I think that’s the point of it. So in so people might miss the actual idea of whatever the post is on about on that particular but they pick up on the error, and then they they feel the need to comment about you made a spelling mistake, and then that post has way more traction than necessary. But because of that spelling mistake, people get caught up and worked up over it, and it’s just interesting. Bill Gasiamis 52:38 And it’s your, I imagine your team would have developed the campaign to have a goal, you would have structured. It would have had all of those things already embedded. So it’s like robust. It’s a really good campaign. The last line is not going to make or break it, and “A” or “The” probably does the same thing anyway, and no one reads, whether it’s an “A” or “The”, or swaps them around, or does any of that work. Mike Kent 52:38 Because you only need to be you need to have 70% comprehension of what you are actually reading or viewing to actually get an A gist of the message. And then at that time, you’re forming the idea in your head anyway of what it is which is actually different to what is actually being said anyway. So never going to get it, you know, it’s a it just doesn’t make it’s a waste of time. Being Your Own Critic Bill Gasiamis 53:34 I have a painting company, and we’ve been painting people’s homes and buildings and commercial property and all that kind of stuff for many years, for about 20 years, and at the beginning there was, it was me, and I needed to make sure that everything was done perfectly, so that there was no no complaints by the customer. So I would spot thing is that nobody would notice or spot that weren’t even errors or imperfections that I would then ‘Okay, I’ll touch that up. I’ll go touch that up. I’ll do that, and then I would hand it over. And in fact, it would be a great outcome. Bill Gasiamis 54:14 The client would say ‘That’s fantastic. But then I met somebody who said to me, like ‘Only you, only you would notice that nobody else would notice that. That’s like a perfect wall, only you’re noticing that. But it’s not something that somebody else pick. And it’s like ‘Oh, okay, so how do we handle how do I handle the end of the job then? So the idea was, tell the customer to go around and critique your work a day or two before you finish, so you’ve done the majority of the work, and a day or two before you finish. Bill Gasiamis 54:46 You give them the permission to go and totally critique it, even the obvious things that we haven’t finished yet, put them on the list. They very rarely come back with a list, because our work is really good anyway, and the things that I know, that I see, they don’t see, or they don’t care if they see it, right? So they didn’t even come up with a list. They barely come up with a list. They might have two or three things, the obvious things are always on there, yep. And then there’ll be other little bits and pieces that are on there that I knew were there that I was going to touch up or do. Bill Gasiamis 55:29 But they pick those things. And then the things that I don’t know about, that sorry, that they don’t know about, that I know is not in their expectation to be done or is not necessary, or is not part of the job, or whatever. So it changed my mind completely. Is when I give the other person the opportunity to look at my work and criticize it or not, they don’t really feel the need to, and it’s, it’s a it’s a really good pass. Bill Gasiamis 55:59 So we kind of apply this principle about 90%, achieving 90% sort of doing it to 90% of our ability instead of 100% is good enough because it’s beyond what most customers expect. Anyway, it’s such a strange thing when we’ve got and then if customers said ‘Oh, by the way, I did pick up on this or that, well then it’s cool. ‘Oh, great, now I can do it and actually meet your expectation further. Mike Kent 56:33 It’s like, I don’t know if it is Google’s tagline or was Google’s tagline, but good enough is good enough. Totally abide by that. Bill Gasiamis 56:46 So important for people to like grasp that concept personally that you know now that you’ve got energy to conserve, and you don’t want to be using up your energy on things that are not supporting your recovery and helping you have a really great day, or getting to your exercise or to your gym session, or to your counseling session, or whatever like, yeah, it’s really important to not waste time and effort and energy into things that are only going to make you go backwards. Mike Kent 57:18 I agree, I was just having a conversation with somebody just yesterday, and they were saying to me, I’m having a really bad day. And I said, but you’re not, are you really? It’s never, ever a bad day. It’s a bad moment in a day, right? I have 17 different emotions every day, and on the of those 17, one or two are not very good, right? But they’re never, it’s never the whole day, right? So we need to stop, like, actually saying those things, because we’re convincing ourselves that we actually are having a really bad day, and then you’re just, like, layering on the different elements. Mike Kent 57:54 And they all and, no, just stop, you know, just understand it’s bad moment and you come out of that moment. It’s like, I say that you can always you have a down. I never say ups and downs. I say downs and ups, you know, I want to end on and up. I don’t want to end up on a down. But it’s silly little things like that, you know, that make the difference, and it resonates with people. They actually understand that ‘Oh, okay, I haven’t thought about now. They’re just thinking that, ‘Okay I don’t have a bad day, or I want to end on an up. Mike Kent 58:27 And I do want to, actually, whenever there is a darkness, there’s always a light follows that. I don’t know how long it’ll be, or my three day, 3 minutes, 3 hours, 3 days, whatever, but it will be light, yeah, and it’s about trying to have people to understand that there is beauty all around us and to actually perceive it, live it, breathe it, and recognize it. Mike Kent 58:59 I think that’s is important, and I can do this, or we can do this because we’ve changed ourselves, you know, and we’ve seen that the difference between where we were and where we are and how we got to where we were, how we are. So, that’s motivational, that’s inspiring for me to be able to actually recognize that and help other people to to recognize that. Bill Gasiamis 59:32 I like what you’re saying, because what you’re talking is your new default setting, that’s where you go most of the time. Mike Kent 59:39 Exactly, exactly. Bill Gasiamis 59:40 It’s not where you always are, but it’s where you default to all the time. And that’s a really good thing, like to be able to default to that version of yourself instead of the angry, depressed, emotional, whatever, which is, you know, we’re there we go there, we deal with that. We go through that, we get through that down, we go to the up, and we get through that darkness and we go to the light like the whole thing. Mike Kent 1:00:08 Yeah, totally agree with that. Bill Gasiamis 1:00:12 Have you in the last five years been able to get back to work? Becoming A Recovery Coach Mike Kent 1:00:15 No. Now I’m a recovery coach to help these people overcome anxiety and reclaim their lives so and I joined the I got trained in the Jay Shetty school, and then I’m now on another program, and it’s high impact coaching, and it’s phenomenal, really is phenomenal. And it’s all about being present or honest or being there for the other person, 100% for the other person. Yeah, it’s not about me. It never was, never will be. You were always there for the other person, what? However they are showing up, whatever they say, and it’s like you. Mike Kent 1:01:11 I was a consultant beforehand, and before I was always, whatever is your problem ‘Okay, I’ll go away and I write it up, and here is the document, here is the CD, whatever. Here is the drive, and they put it in the third draw, if they don’t implement it, and it’s forgotten about, so this isn’t coaching. Is not all about giving people solutions. People already have the solutions in them, right? It’s about actually drawing it out and having them in their own time, understand where they are and and how they’re doing. Mike Kent 1:01:50 And all of that came from I used to work in Chile, right, which is I lived a long, long Mohammed time ago, and I flew across halfway across the world. I didn’t actually know where Chile was, and from England, and got to San Diego, and I was in a company truck going to the factory with one of the other senior brand guys, and he goes ‘You know, we don’t want you here, Mike. ‘Okay, I’m sorry. ‘No, don’t take it the wrong way, but we don’t want you here. Mike Kent 1:01:49 I’m gonna, well, I’m sorry, but I think I might be taking the wrong way, you know, as a really horrible thing to say, Oh no, no. I’m not saying you, you personally, and you what you represent, and the term of the phrase, and it was all about, they want to do things and learn how to do things in their own time. They don’t want to be given the book and told how to do it, because they don’t actually learn. Mike Kent 1:02:54 And so I learned that from a very young age, and that stayed with me, and I right now, as a coach, exactly what just you ask questions and know that the other person has the wherewithal to actually find their answers when they are ready to find them. Bill Gasiamis 1:03:11 You might have the tools, but they’ll be needing them at different stages. They’re not necessarily going to be needing them when you turn up with a tool book and go here, do this. Mike Kent 1:03:23 No, no, no, great. And you don’t say that you can do whatever you want, but you just can’t do it all at the same time. Bill Gasiamis 1:03:35 It’s no different to a book. Is it really like my book? I wrote a book. It’s has a weird title, the unexpected way that a stroke became the best thing that happened. Well, it’s it’s full of 10 steps, or 10 tools, or whatever you want to call them, and if you do all of those, that’s what people did. And all those people achieve post-traumatic growth and are doing amazing things to change their life. I’ve had these types of conversations with them as well. There’s really deep, meaningful conversations, but nobody did it in the order that I wrote the chapters in. Bill Gasiamis 1:04:10 And nobody did it in the timeline that I did it. And nobody, you know, everyone did it in their own way, and they did it in their own time, and they came to terms with the different steps. It took longer for some steps, it took a shorter amount of time for other steps. But they all, they all found their new default way of being in the light in their life, and we just happened to all come together at the same time. So they had already been on their journeys. We found each other at the same time, and then we were able to unpack that and talk about that. Bill Gasiamis 1:04:47 But I’m sure that if I bumped into one of those people, which I had done a couple of times, and said ‘Do this, they would have thought, get lost. I don’t do that, don’t tell me what to do, and I was the same. And coaching, what you’re talking about is really about holding the space for the other person. It’s just about facilitating whatever is about to unfold or needs to be discussed, or whatever’s going to happen. It’s just about literally facilitating them. And it’s not even holding the hand. Mike Kent 1:04:47 I say it’s a catalyst, you are we’re a catalyst. So we just, you know, it’s the washing machine, so you put the powder in, and you spins, and now comes a close kind of thing, though, and we’re just helping them spin faster or better or cleaner. Bill Gasiamis 1:05:47 Yeah, I love it as we come to the end of the interview, because I know it’s late where you are now, tell me about the what’s been the hardest thing about stroke for you? The Hardest Thing About The Stroke Mike Kent 1:06:02 I don’t think the question is asked in the past, is what it is, because I live with it every single day, the first point when I wake up, I have three seconds, two seconds or whatever of reality that ‘Oh well, I wake up, or new day, and then it’s that and then I get out of it five seconds later. But that is still there, it is a reminder that now I’ve managed I’ve managed it to become my mantra, to spur me on, to actually help and serve other people. But there is no denying that. You know, I say 17 emotions in a day. Mike Kent 1:07:01 You know, I still cry and I get upset in personal moments pretty much daily. But that’s okay, because I actually believe now that tears are coming out of my body. So I’m actually getting rid of the poison out of the body, and then I can actually put something better in it. Problem is I’m still in Groundhog Day, so the next day I’m still crying, but there is so much richness. But I would be, I will be, it would not be me to say that this is a perfect life. We got the perfection, if there isn’t, it’s progress. And I accept that is what I am doing and how I’m doing it. Mike Kent 1:07:55 I love what I’m doing and I love how I’m doing it. Would I like to do, be doing something else? It doesn’t matter, because that’s not what I am doing, but it doesn’t it does cross my mind, but I don’t give it the time and day or time and space to actually fester. But so I think that the worst part of it was the very beginning, when I came out of the coma, and the first two months, three months, when I was in a wheelchair and I just I didn’t, I couldn’t find myself. I didn’t know where I was, what I was doing, who was meant to be. Mike Kent 1:08:39 This was not what was supposed to happen, you know, it wasn’t even my question of fault, but I couldn’t even blame myself, you know, because it it had been done to me. Yeah, and I thought ‘Why? So many times I ask that question, or I have asked myself that question, but I’ve learned to realize you don’t need to answer it. You just need to be able to move on from it and resource yourself from it, to move forward and bounce forward and do whatever you want to do, and how you want to do it in the best possible way you can, and that, for me, it’s service. Mike Kent 1:09:26 So it gives service to others. I think that also has been difficult, because I think 10 years ago, I don’t think I would have said that, certainly not 20 years ago, but yeah, it is funny how life changes. Funny how you roll with the punches and that you actually you embrace what you what what you’re given and what you have, and deal with and do the best with it that you possibly can. And I don’t think anyone can ask any more of you than that. What I’ve Learned From The Stroke Bill Gasiamis 1:10:01 Yeah, very comprehensive answer. Thank you. What is something that stroke has taught you? Mike Kent 1:10:09 I think the first word that comes into mind is patience, and I am not a I was never patient before. I mean, you asked my mom or whatever, like my twin brother, we are always like, but now I’m less, much less, but I’m still a little bit of silver, a bit of gun COVID kind of thing. But no, I think walking slower, being patient, reflecting, being doing meditation, doing mindfulness, you know, having my morning routine, realizing that I am not able to do as much as I could do or was doing before in my life. Mike Kent 1:10:58 But I get to do what I want to do, and that’s a real difference, like the got to do and get to do. I really love that nuance, because I suddenly think, okay, I get to do, you know, this podcast, right? I was so looking forward to this, because I never been on a podcast before other one, and it’s like, it’s really exciting. And and that’s that that’s great for me, right? But it doesn’t mean that I’m going to be upset that I’m not doing 85 other things during my day. I’ve accepted that, you know, I do the best I possibly can. So I hope that answers the question. Bill Gasiamis 1:11:42 Yeah, patience. I mean, yeah, that’s a great answer, even if without the explanation. I mean, it’s a great answer, and common, very common answer that people get. What would you like to say to the people watching and listening, who are all stroke survivors and paying attention to you at the moment. Advice From A Stroke Survivor Mike Kent 1:12:09 That we are all in this together, we are a unified group of people. There is not one person in my eyes that is better or bigger, or what, bolder than anyone else. We all have our stories, and all our stories resonate with someone out there in the world, and that’s what’s important, is to get the stories out there to show others who are less abled or are not for whatever reason, or are not as far ahead in their journey as we are, that it is possible everything is figure outable, right? Mike Kent 1:12:52 It really, really is. It’s never, ever the end, I think that’s that’s so important is to have. It’s not about having hope. It’s about believing that what you have is makes you unique and makes you very, very special, right to the people who love you. And that’s enormous, I love that. Bill Gasiamis 1:13:16 I love that too. On that note, thank you so much for being on the podcast. Mike Kent 1:13:21 I know. Thank you. It’s been my pleasure, really has been you’re you’re a fabulous host and very insightful and very brilliant. Thank you very much, really enjoyed it. Bill Gasiamis 1:13:33 Well. Thanks so much for tuning in to this episode of the Recovery After Stroke podcast. Mike’s story reminds us that while we can’t change the decisions or events of the past, we can find purpose and strength by focusing on the present and embracing growth. His insights about resilience, the power of mindset and helping others, are lessons we can all learn from if you found this episode helpful, I’d love for you to leave a comment, like and subscribe on YouTube. It really helps get these stories out to more people who need them. Bill Gasiamis 1:14:12 And if you’re listening on Spotify or iTunes, a five-star review would mean the world to me. It helps others discover the podcast and connect with our community. Remember, check out my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, available on Amazon or recoveryafterstroke.com/book , and if you’d like to join our Patreon community, you can find all the details at patreon.com/recoveryafterstroke . Bill Gasiamis 1:14:42 Thanks again for being here and remember, no matter where you are on your recovery journey, you’re not alone until next time. Take care and thanks for listening. The post You Can’t Change the Past: How Mike Kent Turned a Hemorrhagic Stroke into Growth appeared first on Recovery After Stroke .…

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