A podcast for stroke survivors and carers of stroke patients. This podcast interviews experts in all matters related to recovery from stroke, as well as stroke patients to help you go from where you are to where you would rather be.
Stem Cell Stroke Recovery: What the Research Says (and What It Doesn't) If you've had a stroke (or you love someone who has), you've probably seen the same promise pop up again and again: “Stem cells can fix the damage.” And when you're tired, frustrated, and doing the hard work of rehab every day, that promise can feel like a lifeline. But here's the problem: hope is powerful… and hype knows it. A viewer recently asked me a question that's become more common over the last few years: “What can you say about the effectiveness of STC30 stem cell treatment?” And my honest first reaction was: I don't even know what that is. So instead of guessing, I did what I always encourage stroke survivors to do: I checked. Carefully. Because the last thing I want is to sound confident while accidentally sending someone into an expensive rabbit hole. What most people think stem cells do (and why that's not quite right) When people hear “stem cells,” it's easy to imagine a simple story: “New cells will replace the damaged brain cells… and I'll be back to normal.” But most current thinking in research is closer to this: Stem cells may act more like helpers than replacements. Instead of becoming brand-new brain tissue, the hope is that stem cells may release signals that support healing, things like: calming inflammation improving the “repair environment” in the brain supporting blood flow and recovery processes encouraging new connections (neuroplasticity) So rather than “magic new brain,” the real question becomes: Does this create better conditions for recovery? That's still an exciting idea. But exciting isn't the same as proven. The honest truth about stem cell stroke recovery research When you zoom out and look at the research as a whole, the most accurate summary is this: There are encouraging signals… and real uncertainty. Some studies suggest stem cell approaches might help some people improve things like movement, function, or daily activities especially under certain conditions. But here's the fine print most people never see: 1) Studies don't all use the same approach Trials vary widely in: the type of cells used how they're prepared when they're given (early vs later) how they're delivered (IV drip vs artery delivery vs other methods) what outcomes they measure how long participants are followed So when someone says, “stem cells work,” the real question is: Which stem cells are given when, given how, and for who? 2) Quality varies across trials Not all trials are designed equally. Some are small. Some use different measurement scales. Some follow up for shorter periods. And that makes it hard to draw strong conclusions that apply to everyone. 3) Long-term certainty still isn't there Even when short-term safety looks okay in some studies, long-term tracking can be limited depending on the approach used. So the responsible stance is not “yes” or “no.” It's: “Show me the details.” Why branded programs confuse people (and what to do about it) This is where many survivors get stuck. A clinic or company may use a name that sounds scientific, something like “STC30,” “protocol X,” “advanced regenerative therapy,” but the name itself doesn't automatically tell you: what the cells actually are whether it's been tested publicly whether results are published whether it's regulated as treatment, trial, or something else So if the name is unclear, don't decide based on the label. Decide based on the details. “Promising doesn't automatically mean proven.” My simple 3-question filter for any stem cell offer You don't need a science background to avoid being misled. Here's the filter I use simple, practical, and hard to game: 1) Is this proven… or experimental? If a provider can't clearly explain in plain English what the treatment actually is, where it comes from, and what the protocol involves, treat it as experimental. Experimental doesn't automatically mean bad. It just means: you're stepping into uncertainty, and you deserve to know that upfront. 2) What evidence is public and checkable? Look for things like: published studies you can read registered clinical trials clear reporting on outcomes and side effects follow-up data over time If all you're getting is testimonials and before/after stories, that might feel hopeful… but it's not enough to make a serious decision. 3) What's the real cost (money and focus)? This one is huge in stroke recovery. Sometimes people chase a big intervention and accidentally reduce the things that are already proven to help: consistent rehab practice repetition and movement training sleep and recovery emotional support and community nutrition and general health basics So if you ever explore stem cells, my personal view is: Don't let it replace the fundamentals. Treat it as an add-on decision, not the main plan. Questions to ask any provider before you spend a cent If you're seriously considering stem cell therapy, print this list or screenshot it. Ask your provider: What exactly are the cells? Where do they come from? How are they prepared and tested for quality? How is it delivered: IV drip, injection, artery, or other? Who is it best suited for, and who should NOT do it? What are the known risks and side effects? What follow-up do you provide, and for how long? Is this part of a registered clinical trial or private treatment? Can I see the trial registration or published data? If they can answer calmly and clearly, that's a good sign. If they dodge, rush, or oversell? Pause. The research shortcut that changed how fast I can respond I used to spend half a day digging through articles, trial registrations, and scattered resources, especially when someone asked a question about a product or protocol name I didn't recognize. Now I use Turnto.ai to speed up the finding part, and then I still do the most important step: I check what matters. That means: reading beyond headlines looking at study details comparing sources staying honest about what's known vs unknown If you're the kind of person who wants to stay current, tools like that can help you find relevant research faster but the real power is still the same skill: curiosity without getting fooled by hype. Where to go next if you feel stuck in recovery If you're reading this and thinking, “I just want something that works,” I get it. But the best progress usually comes from: a clear plan consistent practice the right supports and not wasting energy on shiny distractions If you want to go deeper, here are two ways I can support you: Book: recoveryafterstroke.com/book Patreon: patreon.com/recoveryafterstroke And if you haven't watched the video yet, it's embedded above because seeing how I search and how I evaluate claims can help you do the same. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. The post Stem Cell Stroke Recovery: What the Research Says (and What It Doesn't) appeared first on Recovery After Stroke.
Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means There are stroke stories that arrive like lightning. And then there are the ones that feel like a quiet, terrifying slide hour by hour until you wake up and everything is different. For Debra Meyerson (also known as Deborah), that difference had a name: “the slow fall off a cliff.” Her husband Steve describes watching the change unfold overnight in the hospital, neurological tests every hour, skills fading, the unknown getting heavier with each check-in. And the scariest part? Not knowing where the bottom was. This episode isn't only about what Debra lost. It's about what she rebuilt with aphasia, with grief, with a fierce independence that made asking for help its own mountain, and with a new definition of recovery that doesn't depend on going back in time. When Stroke Doesn't “Hit”… It Develops One of the most jarring elements of Debra's experience was the way the stroke revealed itself. Steve shares that Debra left the emergency room still talking, slurring a little, but still planning. Still believing she'd be back teaching soon. Then the overnight monitoring began, and the decline became visible. From midnight to morning, her movement and speech changed dramatically. By morning, she couldn't move her right side. And she couldn't make a sound. That's what makes Debra's phrase so powerful: it captures the reality many survivors and families live through, watching ability disappear in stages, not all at once. It's not just a medical event. It's an emotional one. And it changes how you experience time. The mind starts bargaining. The heart starts bracing. The body is suddenly not predictable anymore. The Hidden Clue: Dissection, Headaches, and Near-Misses Debra's stroke was ischemic, but the cause wasn't a typical blood clot. Steve explains that it was due to a dissection, a tear in the inner wall of an artery. In the months leading up to the stroke, there were warning signs: severe headaches episodes where she nearly lost consciousness a moment where she told their son, “I think I'm having a stroke,” but the symptoms resolved before EMS arrived Steve describes a likely “opening and closing” pattern of temporary interruptions to blood flow that didn't show up clearly during exams because, in the moment, she appeared okay. This is one reason caregivers can feel so haunted after the fact: you did the right things, you sought help, you went to specialists… and the stroke still happened. That's not failure. That's reality. 20230922-GSE headshots at CERAS building in Stanford, CA Aphasia After Stroke: When Words Don't Do What You Want Aphasia isn't one experience. It's a spectrum, and Debra's challenge is word-finding, both in speaking and writing. When Bill asks whether writing is easier than speaking, Debra's answer is simple and blunt: it's hard either way. She also notes that dictation isn't a shortcut. What makes Debra's story especially moving is how Steve describes the long arc of speech returning: weeks before she could even form sounds a month or two before repeating words then, months later, the first original word that made it out unprompted, not as an exercise It happened during a normal moment at a table with family, searching for the name of the pig from a movie no one could remember. And Debra suddenly blurted out: “Babe.” It might sound small to someone who's never experienced aphasia. But for anyone who has, or for anyone who's loved someone through it, that moment is enormous. It's proof that the brain is still reaching for language. Proof that the person is still in there, still trying to connect. And yes, Steve mentions melodic intonation therapy, a method that attempts to engage the brain's musical/singing pathways to support speech. Debra's improvement, even years later, is described as gradual marginal gains that add up over time. The Identity Problem Nobody Prepares You For When Bill asks what part of her old identity was hardest to let go, Debra points to the heart of it: Stanford professor athlete fiercely independent skiing (a love that mattered deeply) the ability to do life without needing so much help This is the part many survivors don't see coming: you're not only recovering movement or speech. You're grieving a version of yourself that once felt automatic. And that grief can be complicated, because you might still look like you. Inside, everything is renegotiated. This is where Debra and Steve offer something that can change the trajectory of recovery: adaptation instead of abandonment. Debra couldn't ride a single bike anymore, but they began riding a tandem, and it became the thing they could do together vigorously, something athletic, meaningful, and shared. Not the same. But real. Cycles of Grief: Joy Can Trigger Loss Debra describes grief as something that shows up constantly, “every day… every hour.” Steve offers a powerful example: becoming grandparents. Debra was ecstatic. Over the moon. And then, the next morning, she was furious, spring-loaded into a bad mood, snapping at everything. Why? Because beneath the joy was a private inventory of what she couldn't do: hold the baby safely change a diaper be alone with their grandson the way she wanted to be chase a toddler the way she imagined This is what “cycles of grief” looks like. Not sadness replacing joy. Sadness sitting next to joy. And if survivors don't understand that's normal, they can interpret it as brokenness or failure. It's not. It's grief doing what grief does: reminding you of what mattered. The Care Partner Trap: Guilt, Burnout, and the “Fix It” Reflex Care partners often disappear inside the role. Steve names a different approach, one supported early by friends who told him plainly: if you don't take care of yourself, you're no use to Deb. So he set priorities: exercise eating well sleeping well He also acknowledges how support made that possible: family help, flexible work, and friends showing up. Then comes a line that many couples will recognize immediately: toxic positivity. Steve admits he struggles with sadness; he tends to solve problems, cheer people up, and push toward the bright side. But Debra doesn't always want to be talked out of it. Sometimes she needs space to grieve without being “fixed.” That's the lesson: Support isn't always uplifting someone. Sometimes support is staying present while they feel what they feel. “True Recovery Is Creating a Life of Meaning” Debra's philosophy shows up in the opening of her book and in the arc of this conversation: “True recovery is creating a life of meaning.” At first, recovery was about returning to who she used to be, therapy, effort, pushing hard. Then something shifted: writing a book became a turning point. It helped her stop using her old identity as the measuring stick and start asking a new question: “How do I rebuild a life I can feel good about with the cards I've been dealt?” That idea is the bridge for so many survivors: You don't have to pretend you're fine. You don't have to deny what you lost. But you also don't have to wait for a full return to start living again. Debra Meyerson: Aphasia After Stroke Interview Debra Meyerson's “slow fall off a cliff” stroke led to aphasia, grief, and a new definition of recovery: rebuilding identity with meaning. Stroke Onward: InstagramX.COMFacebookLinkedInYouTubeTikTokVimeo Debra Meyerson X.COMLinkedInFacebookInstagramSteve:LinkedIn Highlights: 00:00 Introduction and Background06:11 The Experience of a Stroke: A Slow Fall Off a Cliff22:45 Navigating Caregiving: Balancing Needs and Support32:01 Understanding Aphasia: A Spectrum of Experiences43:05 The Importance of Sadness in Healing50:08 Finding Purpose Through Advocacy53:31 Building the Stroke Onward Foundation57:12 Advice for New Stroke Survivors Transcript: Introduction and Background – Steve Zuckerman and Debra Meyerson Bill Gasiamis (00:00)Welcome to the recovery after stroke podcast. name is Bill. And if you’re a stroke survivor or you love someone who is you’re in the right place before we begin a genuine thank you to my Patreon supporters. After more than 10 years of hosting this show solo, your support helps cover the costs of keeping it online and helps me keep showing up for stroke survivors who need hope and direction. And thank you to everyone who supports the show in the simple ways to YouTube comments, Spotify, Apple reviews. people who’ve grabbed my book, and even those who stick around and don’t skip the ads. It all matters more than you know. Today you’re going to meet Deborah Meyerson and her husband, Steve Zuckerman. Deborah describes her stroke as a slow fall off a cliff. And that phrase captures something so many stroke survivors experience but struggle to explain. We talk about aphasia after stroke, word finding. The moment a single word returned and what happens when recovery stops meaning going back and starts meaning rebuilding a life you can actually feel proud of. Deborah and Steve Myerson. Welcome to the podcast. Debra and Steve (01:08)Steve Zuckerman That’s okay. I don’t mind being Mr. Meyerson from time to time. Bill Gasiamis (01:17)Steve Zuckerman, of course. I mean, I’ve seen it on every email. I’ve seen it on every conversation we’ve had, but that’s okay. I mean, you’ve probably been called worst, Steve. Debra and Steve (01:29)Absolutely, much worse. Bill Gasiamis (01:32)Debra, before the stroke, how would you have described yourself professionally, socially and personally? Debra and Steve (01:39)Outgoing, social, comfortable, no time to to to other’s time. Not taking up other people’s time? Yes. In contrast to me. Bill Gasiamis (01:59)Yes, David, you’re very needy. Debra and Steve (02:02)Yeah, and ⁓ yeah, it’s really outgoing. Bill Gasiamis (02:09)Outgoing, yeah, fantastic. Debra and Steve (02:11)I’ll add, because you didn’t say it, a incredibly hardworking, self-demanding professional for whom good was never good enough. Yeah. Yeah. Yeah. Something like that. Bill Gasiamis (02:23)perfectionist. Fair enough Steve. What roles defined you back then? you’re a partner, you’re a father. How did you go about your day? Debra and Steve (02:37)I mean, I think, you know, very similar to Deb, we were both hard driving professionals who had serious careers. We had three kids that we were raising together and both took parenting very seriously. So worked really hard, you know, to not travel at the same time, to be home for dinner, ⁓ to be at sports games. And we were both very athletic. So both things we did together and things we did separately. I think, you know, before Deb’s stroke, most of our time and attention was focused on career and family and, you know, sort of friends were a third, but, ⁓ staying healthy and staying fit. So those were kind of all parts of, I think, who we both were. met mother, ⁓ athletic sailor, biker, ⁓ ⁓ family is first in academics. Bill Gasiamis (03:44)and academic and what field were you guys working in? Debra and Steve (03:48)No, am a, Steve is not academic. I am an academic. ⁓ Deb was, you know, immediately before the stroke. Deb was a tenured professor at Stanford. She had had lots of other academic jobs before that. ⁓ We met when I was in grad school for an MBA and Deb was getting her PhD. ⁓ So, you know, she is lot smarter than I am and was willing to work a lot harder academically than I ever was. ⁓ I’ve bounced back and forth between kind of nonprofit roles, nonprofit management roles, and a career in finance and business. So I sort of… have moved back and forth between for-profit and not-for-profit, but always sort of on the business side of things. Bill Gasiamis (04:50)often say when people meet my wife, Christine, for the first time and we talk about what we do and the things that we say. I always say to people that between me and my wife, we have four degrees. And then I qualify that. say, she has four and I have zero. And ⁓ she has a master’s in psychology, but ⁓ I never went to university. I never did any of that stuff. Debra and Steve (05:10)Yeah. Bill Gasiamis (05:19)So it’s very interesting to meet somebody who’s very academic and to be a part of her life when she’s in the study zone. my gosh, like I have never studied that much, that intensely, that hard for anything. And it’s a sight to behold. And I’m not sure how people go through all the academic side, all the requirements. And then also Deb, being a mom, being a friend. being active in your community and doing all the things that you do. I just don’t know how people fit it in. So it’s a fascinating thing to experience and then to observe other people go through. Debra and Steve (05:57)It’s really that we had really a lot of time to talk. It was a full life. Debra Meyerson – The Experience of a Stroke: A Slow Fall Off a Cliff Bill Gasiamis (06:11)Yeah, fantastic. What you did, Deb has described the ⁓ stroke as a slow fall off a cliff. What did it actually feel like in the first moments that the stroke happened? Debra and Steve (06:28)Two weeks after my stroke, I am going to the, back to the classroom. I am really not aware of the damage. So right at the outset, Deb was kind of in denial. As the symptoms were first starting to set in, she was still talking about you know, okay, this is annoying, but in three weeks I’m starting the semester ⁓ and genuinely believed she would. actually the slow fall off a cliff was really how I described the first full night in the hospital. This was in Reno, Nevada. ⁓ And Deb sort of left the emergency room talking. slurring her words a little bit, but talking about how she was going to be back in the classroom. And then over the course of that night, from midnight to eight in the morning, they woke her every hour to do a neurological test, you move your arm, move your leg, point to this, you know, say this word and just her skills got worse and worse and worse. And in the morning, She couldn’t move her right side at all and couldn’t make a sound. And that was the, that’s what we called the slow fall off the cliff because we knew at midnight that there was significant brain damage, but we didn’t see the ramifications of that damage. sort of happened over that eight hour period. ⁓ that Deb really wasn’t aware of any of that. was. you know, kind of her brain was in survival mode. ⁓ But for myself and our oldest son, Danny, you know, that was sort of a feeling of helplessness. was watching the person you love kind of fade away or the capabilities fade away. And we didn’t know how low the bottom would be ⁓ without being able to do anything. Bill Gasiamis (08:53)Is there an explanation for that? Now, obviously Deb had a stroke, so that’s the overarching issue, the problem. But I’ve had a lot of stroke survivors explain their symptoms in that slow onset ⁓ situation, whereas mine were just there. I had a blade in my brain, the symptoms were there. Another person ⁓ had an ischemic stroke, bang, the symptoms were there. So why does it take so long for some people to, for the symptoms to develop? Debra and Steve (09:25)I had a dissection five months ago for this stroke. I had really bad headaches. Yeah, so five, six months before Deb’s stroke, she was having bad headaches. She had two episodes where she kind of almost lost consciousness. And one of them, she actually said to our son, call dad, I think I’m having a stroke. And by the time the EMS got there, she was fine. ⁓ Her stroke, it turned out was caused by a dissection, which is a tear. in the inner wall of the artery. So in some ways it’s like a blood clot. It is an ischemic stroke because it’s the blockage of blood flow. But unlike most ischemic strokes, it’s not because of a blood clot. It’s because of this flap of, it’s not biologically skin, but it’s like a flap of skin coming across and blocking off the blood flow. And what they think happened, and it’s really just educated guessing, is that for that six month period, the flap was there, but it kind of kept opening, closing, opening, closing. So she’d have temporary loss of blood flow to the brain, but not permanent loss. Bill Gasiamis (11:04)We’ll be back with more of Deborah Meyers’ remarkable story in just a moment, but I wanna pause here because what Deborah and Steve are describing is something a lot of us live with quietly. That feeling, you can be having a good moment and then grief shows up out of nowhere, or you’re working so hard to stay positive and it starts to feel like pressure instead of support. In the second half, we’ll go deeper into the cycles of grief. the trap of toxic positivity and the shift that changed everything for Deborah when she stopped measuring recovery by who she used to be and started rebuilding identity with meaning. If this podcast has helped you feel less alone, you can support it by sharing this episode with one person who needs it, leaving a comment or subscribing wherever you’re watching or listening. All right, back to Deborah and Steve. Debra and Steve (11:58)And when she had those two events, it was probably stayed closed a little bit longer, but then opened up. But she had a scan, she went to neurologists and because every time she was examined, it was okay. They didn’t find the problem. And then when she had the stroke, it was a permanent blockage that just didn’t open back up again. And Your question is a great one that I’ve never asked. I don’t know why, because what they told us was we can see the damage to the brain. The brain has been damaged. They can tell that on the scan, but that the impact of that damage, how it will affect your motion and your speech will play out over time. And I don’t know why that was true for Deb, whereas, as you say, for some people, it seems like the impact is immediate. And that’s a, that’s a good one. I’m going to, I’m going to Try to research that a little bit. Bill Gasiamis (12:58)That’s just a curious thing, isn’t it? to sort of understand the difference between one and the other. I’m not sure whether if we find out what the difference is, whether there’s say something that a stroke survivor listening can do or a caregiver can do in that situation, like what can be done? How can it be resolved? Maybe different steps that we need to take. I don’t know, but I’d love to know if there was a doctor or a neurologist or somebody who might be able to answer that. Maybe we need to find someone. Debra and Steve (13:29)The doctor and the neurologist didn’t see it. Yeah, in the period before the stroke, they didn’t see it. While we were in the hospital when the stroke was happening, what they told us was at that point, there really wasn’t anything that could be done. The damage was done. So no intervention. would lessen the damage. ⁓ again, we are far from doctors. So there’s a lot about that that we don’t know. Bill Gasiamis (14:08)understood. Deb, what part of your old identity was the hardest to let go? Debra and Steve (14:14)The Stanford professor, athlete, had really a lot of… One hand is so difficult and independent person. Bill Gasiamis (14:33)Yeah. Debra and Steve (14:34)I am, skiing is so, I really love to ski and I am not, I am really not able to ski. Bill Gasiamis (14:52)understood so you were a professor, you were independent, you were physically active and all that stuff has had to stop happening at this point in time. Debra and Steve (15:03)I am the…striking…crossing…cycling…we are the…the…Sieve and I… Bill Gasiamis (15:19)You guys used to do something tandem. Debra and Steve (15:21)Yes, a lot of time in the stroke across America. Well, so I think we’re sort of answering a couple of different questions at the same time. I think what Deb was saying was early on, kind of in that first three or four years, she really, you know, was giving up her role as a Stanford professor, giving up skiing, cycling, sailing, and just the… not being a fully independent person needing so much help. That was really a lot of the struggle early on. Deb did return to a lot of those things. And that was a big part of the recovery process was realizing that she may not be able to do them the same way she used to, but there were a lot of different things. And then the cycling, Deb can’t ride a single bike, but we started riding a tandem. And that adaptation has proven really important for us because it’s, it’s the thing we can now do together vigorously for long periods of time. That is really a, a sport that we can do together, ⁓ and love. And so that that’s really been a, an adaptive way to get back to something, not exactly the same way as she used to do it before the stroke, but in a way that is very meaningful. Bill Gasiamis (16:46)A lot of stroke survivors tend to have trouble with letting go of their old identity in that they feel like they need to completely pause it and put the whole identity aside rather than adapt it and change it so that you bring over the parts that you can and you make the most of them, know. And adaptive sport is the perfect way. You see a lot of people in the Paralympics becoming gold medalists after they’ve been injured. a sports person before their injury and now all of a sudden they’re champion gold medal winning athletes because they decided to adapt and find another way to participate. And that’s what I love about what you guys just said. That’s still able to meet the needs of that identity, but in a slightly different way. What about you, Steve? Like when Deb goes through a difficult time and she has a stroke and then you guys come home from hospital, you’re dealing with, ⁓ well, all the changes in your life as well because you become a care, while you guys describe it as a care partner, we’ll talk about that in a moment. But as a care partner, ⁓ how do you go about doing that without, and also at the same time, protecting a little bit of your needs and making sure that your needs are met? Because a lot of caregivers, care partners, put all their needs aside and then they make it about the person who is ⁓ recovering from stroke. And then it leads to two people becoming unwell in different ways. One potentially emotionally, mentally, and the other person physically and all the other things that stroke does. Debra and Steve (18:36)Yeah, I mean, I think, um, Kyle was lucky in a couple of ways. One, a very close friend very early on who had been through similar situations said, you know, don’t forget, you’ve got to take care of yourself. If you don’t, you’re of no use to Deb. And so from the very beginning, I had people reminding me. I also had a ton of support in supporting Deb. Deb’s mom, you know, came up and lived with us for six months. ⁓ So I could go back to work a lot sooner than I otherwise would have been able to go back to work. And I was fortunate that my job was fairly flexible. ⁓ But, you know, I loved my work and it meant I wasn’t focused on the caregiving or care partnering aspects of my role 24 seven. I got to go do something else independently. ⁓ We also had a lot of friends lend support as well. So, you know, I think I basically said, I’ve got to organize around supporting Deb, no question about it. But with guidance from friends, I sort of said, okay, my three priorities are going to be exercising, eating well, and sleeping well. And I really just set those out as my goals and I created ways to do that. wall and that was sort of my physical health but also my mental health. And so, you know, sort of a problem solver and compartmentalizer by nature. So I guess maybe I was lucky that dividing up those roles was a little more natural to me than maybe it is for others. But it also took, you know, took deliberate choice to make sure not to let myself get sucked so far into the caring piece. that I got in healthy and was lucky enough to have support so that I was able to not let that happen. Bill Gasiamis (20:42)Yeah, a lot of people feel guilt like this unnecessary guilt that, I can’t leave that person alone or I can’t ⁓ look after myself or take some time to myself because the other person needs me more than I need me. And that’s an interesting thing to experience people talk about in the caregiver role where they become so overwhelmed with the need to help support the other person that they… ⁓ that they have guilt any time that they step away and allocate some care to themselves. They see caring as a role that they play, not as a thing that they also need to practice. Debra and Steve (21:29)Yeah, yeah. Well, I think I was also lucky because Deb is so fiercely independent that she wanted as little help as she could possibly get away with. So ⁓ she was not the kind of stroke survivor that was sort of getting mad when I walked out of the room. It was like she was trying to kick me out of the room at times that I shouldn’t leave the room. And so, you know, again, ⁓ Deb was not a demanding, again, she just wanted as little help as she could possibly survive with. And that probably made it easier for me to not feel guilty because it’s like, well, that’s what she wants. She wants me to get out of here as long as she was safe. Navigating Caregiving: Balancing Needs and Support Bill Gasiamis (22:16)That mindset is a really useful one. It makes it possible for people to activate neural plasticity in the most ⁓ positive way. Because some people don’t realize that when it’s hard to do something and then the easier thing is to say, Steve, can you go get me that or can you do this for me? That neural plasticity is also activated, but in a negative way. ⁓ How does your recovery or your definition of recovery evolve over time? How did it change over time? Debra and Steve (22:57)⁓ How did how you think about recovery change over time? The realizing I had to build realizing I had the of my identity and my life. The same past and writing a book. ⁓ Three, four years ago, four years after my stroke, really, well, ⁓ I am really, I am so committed to doing the best. No. I mean, you know, the first three or four years after Deb’s stroke, it really was all about trying to get back to who she used to be. Therapy, therapy, therapy, therapy, therapy, work hard, we’ll get back to life as we do it. And when Deb said, when she lost tenure and said she wanted to write a book, I thought she was nuts. was like, you know, her speech wasn’t as good then as it is now. you I was at her side when she wrote her first academic book and that was brutal and she didn’t have aphasia. So I was like, I really thought she was nuts. But in hindsight, it really was that process of writing a book that got her to turn her knowledge about identity onto herself. that really changed her view of what recovery meant. She sort of started to let go of recovery means getting back to everything I used to be doing and recovery means how do I rebuild an identity that I can feel good about? May not be the one I’d ideally want, but in the face of my disabilities, how do I rebuild that identity so that I can rebuild a good and purposeful and meaningful life? that really was an evolution for both of us. over the five-year book writing period. I sometimes say it was the longest, cheapest therapy session we could have gotten because it really was that kind of therapeutic journey for us. And really a lot of the 25 people are in the book and the friends and colleagues are in the book, really a lot of the colleagues. Deb was a social scientist and a researcher and she didn’t want to write a memoir. She wanted to write a research book. It has elements of a memoir because her story and our story is threaded throughout. But, you know, we learned so much from the interviews Deb did and and I was not involved in the interviewing process, but having that diversity of stories and understanding some of the things that were very common for stroke survivors and other things that were so different from survivor to survivor helped her, helped us on our journey. So that book writing process had so many benefits. Bill Gasiamis (26:49)Very therapeutic, isn’t it? I went on a similar journey with my book when I wrote it and it was about, again, sharing other people’s stories, a little bit about mine, but sharing what we had in common, know, how did we all kind of work down this path of being able to say later on that stroke was the best thing that happened. Clearly not from a health perspective or from a ⁓ life, ⁓ you know. the risk of life perspective, from a growth perspective, from this ability to be able to ⁓ look at the situation and try and work out like, is there any silver linings? What are the silver linings? And I get a sense that you guys are, your idea of the book was in a similar nature. Do you guys happen to have a copy of the book there? Debra and Steve (27:39)Yes. Of course. Don’t we have it everywhere? Bill Gasiamis (27:42)Yeah, I hope so. Identity theft, yep. I’ve got my copy here somewhere as well. Now, how come I didn’t bring it to the desk? One second, let me bring mine. Yes. There you go, there’s mine as well. I’ve got it here as well. So it’s a really lovely book. ⁓ Hard copy. ⁓ Debra and Steve (27:52)Yeah. You must have the first edition not the second edition. Because we didn’t print the second edition in hard copy so it’s not a white cover can’t tell in the photo. Bill Gasiamis (28:07)okay, that’s why. That is a blue cover. Debra and Steve (28:17)⁓ No, the paper cover on the front. Bill Gasiamis (28:20)The paper cover is a white cover. Debra and Steve (28:22)Yeah. So that’s actually the first edition of the book that came out in 2019. And then the second edition just came out about two months ago. ⁓ And they are largely the same. But the second edition has a new preface that sort of, because we wrote that in 2019 and then had five years of working on Stroke Onward and learning more, we kind of brought our story up to 2020. 2024 and then two chapters at the end, one with some of the insights we’ve learned ⁓ kind of since writing the first book and a final chapter about what we think might need to change in the US healthcare system to better support stroke survivors. So we’ll have to get you a copy of the new one. Yeah. Bill Gasiamis (29:13)Yeah, why not? Signed copy, thank you very much. ⁓ Debra and Steve (29:15)Yeah, and the Julia Wieland. ⁓ It’s available on audiobook as well via, we were fortunate to be able to work with a great narrator named Julia Wieland, who’s an award winning audiobook narrator and actually has a business called Audio Brary that she started to really honor narrators and help promote the narrating of audio. the narrators of audio books. ⁓ well, make sure you send us an email with the right mailing address and we’ll get you new copy. Bill Gasiamis (29:55)Yeah, that’d be lovely. So what I’ll do also is on the show notes, there’ll be all the links for where people can buy the book, right? We won’t need to talk about that. We’ll just ensure that they’re included on the show notes. I love the opening page in the book. ⁓ It’s written, I imagine, I believe that’s Deborah’s writing. Debra and Steve (30:14)⁓ yeah, yeah. yes, we have a signed copy of the first edition. Yeah. Bill Gasiamis (30:20)So it says true recovery is creating a life of meaning. Deborah Meyerson. Yeah, you guys sent me that quite a while ago. By the time we actually connected, so much time had passed. There was a lot of people involved in getting us together. And you know, I’m a stroke survivor too. So things slipped my mind and we began this conversation to try and get together literally, I think about a year earlier. So I love that I have this. this copy and I’m looking forward to the updated one. ⁓ And it’s just great that one of the first things that Deb decided to do was write a book after all the troubles. Now your particular aphasia Deb, I’m wondering is that also, does that make it difficult for you to get words out of your head in your writing as well and typing? Debra and Steve (31:13)Yes, dictation is my dictation. It’s so hard. Speaking and writing isn’t the same. Bill Gasiamis (31:31)Speaking and writing is the same kind of level of difficulty. Understanding Aphasia: A Spectrum of Experiences Debra and Steve (31:35)Yeah, and the ⁓ other survivors in aphasia didn’t, Michael is. Want me to help? Yeah. Yeah, just that, and I think you know that there are so many different ways aphasia manifests itself and word finding is Deb’s challenge and it’s true whether she’s speaking or writing. other people and a guy who rode cross country with us, Michael Obellomiya, he has fluent aphasia. So he speaks very fluently, but sometimes the words that come out aren’t what he means them to be. So the meaning of what he says, even though he says it very fluently, and he also has, I think, some degree of receptive aphasia so that he hears what people are saying, but sometimes the instruction or the detail doesn’t. register for him and so aphasia can be very very different for different people. Bill Gasiamis (32:37)Yeah, there’s definitely a spectrum of aphasia. then sometimes I get to interview people really early on in their journey with aphasia and, ⁓ and speech is extremely difficult. And then later on, if I meet them again, a few years down the track, they have ⁓ an improvement somewhat. ⁓ perhaps there’s still some difficulty there, but they can often improve. ⁓ how much different was the Debra and Steve (33:08)15 years ago? I don’t know speech at all. Bill Gasiamis (33:23)No speech at all. Debra and Steve (33:24)Yeah. So Deb, it took several weeks for her to even be able to create sounds, maybe a month or two before she was sort of repeating words. ⁓ We have a great story of the first time Deb actually produced a word out of her brain. So it wasn’t an answer to a question or a therapy exercise. but we were sitting around a table and a bunch of people who hadn’t had strokes were saying, what’s that? No, my family. Yeah, with your brother. No, our family. Yeah. Danny and… Okay, anyway. We were talking about, what was that movie where the guy trained a pig to… do a dog show and what was the pig’s name and none of us could remember it and Deb just blurted out, babe. And it was like we started screaming and shouting because it was the first time that something that started as an original thought in her head actually got out. And that was like four months after her stroke. ⁓ A year after her stroke, it was really just isolated words. ⁓ She then did a clinical trial with something called melodic intonation, a kind of speech therapy that tries to tap into the other side of the brain, the singing side of the brain. And then I would say, you know, it’s been, mean, Deb’s speech is still getting better. So it’s just marginal improvement ⁓ over time. Bill Gasiamis (35:10)Yeah, Deb, what parts of Professor Deborah Meyerson remain and what’s entirely new now? Debra and Steve (35:19)⁓ The sharing knowledge and trading knowledge is the same. The new is how I do it. More constraints, I need help. really help and I am so bad at asking. Really bad at asking. I have really a lot of phases of classes and Ballroom classes, you know ballroom dancing. Yeah, no In the work we do Deb’s favorite thing to do is to teach so we’ve been invited, you know ⁓ Quite a few speech therapists in the United States are using identity theft as part of the curriculum in their aphasia course in the speech language pathology programs Bill Gasiamis (36:28)So speaker-2 (36:28)I’ll be. Debra and Steve (36:48)⁓ and we’ve been invited to visit and talk in classes. And Deb just loves that because it’s back to sharing knowledge. It’s a different kind of knowledge. It’s not about the work she did before her stroke, but it’s about the work and the life experience since. that is still, Professor Deb is still very much with us. Bill Gasiamis (37:14)Yeah, Professor Deb, fiercely independent, ⁓ doesn’t like to ask for help, ⁓ still prefers to kind of battle on and get things done as much as possible and suffer through the difficulty of that and then eventually ask for help. Do you kind of eventually? Debra and Steve (37:32)Yeah, yeah, you skipped the part about correcting everything her husband says. That’s not quite exactly right. Bill Gasiamis (37:40)Well, that’s part of the course there, Steve. That’s exactly how it’s meant to be. And you should be better at being more accurate with what you have to say. Debra and Steve (37:49)I thought we’d be on the same side on this one. Bill Gasiamis (37:53)Sometimes, sometimes as a host, you know, I have to pick my hero and as a husband, I truly and totally get you. Deb, you describe experiencing cycles of grief. ⁓ What does that actually look like in a day-to-day life now? And I kind of get a sense of what cycles of grief would mean, but I’d love to hear your thoughts, your version of what that means. Debra and Steve (38:22)Every day, hour every day, small ways and big ways. Like one year ago, Well, grandmothers. Can I correct you? It was 16 months ago. I’m going to get her back. Yeah. That’s what she does to me all the time. I am really happy. Make sure you explain. don’t know if they would have caught what it was that made you so happy. Grandmother. Sarah, Danny and Vivian. I know, you don’t have to tell me. Just that we became grandparents for the first time. And Deb was ecstatic. I am so happy and also really frustrated. And I don’t… crawling… no. You want me to help? I mean, you know, it’s sort of the day we got there, the day after the baby was born in New York and Deb was over the moon and the next morning… We were walking back to the hospital and Deb was just spring-loaded to the pissed off position. She was getting mad at me for everything and anything and she was clearly in an unbelievably bad mood. And when I could finally get her to say what was wrong, it was that she had been playing all night and all morning all the ways in which she couldn’t be the grandmother she wanted to be. She couldn’t hold the baby. She couldn’t change a diaper. She couldn’t, you know, spell the kids later on to give them a break by herself because she wouldn’t be able to chase no one is our grandson around. And so she had had really kind of gone into grieving about what she had lost just in the moment when she was experiencing the greatest joy in her life. And that’s an extreme example of a cycle of grief. And but it happens, as Deb was saying, it happens. every hour, maybe three times an hour where you’re doing something that’s good, but then it reminds you of how you used to do that same thing. so, you know, when we talk about and write about cycles of grief, it’s the importance of giving yourself that space to grieve because it’s human. You lost something important and it’s human to let yourself acknowledge that. But then how do you get through that and get back to the good part and not let that grief trap you? And that story from 16 months ago in New York is sort of the, that’s the poster child, but it happens in big ways and small ways every day, 10 times a day. Bill Gasiamis (42:00)Sadness is a thing that happens to people all the time and it’s about knowing how to navigate it. And I think people generally lack the tools to navigate sadness. They lack the tools to ⁓ deal with it, to know what to do with it. But I think there needs to be some kind of information put out there. Like you’re sad. Okay. So what does it mean? What can it mean? What can you do with it? How can you transform it? Is it okay to sit in it? ⁓ What have you guys learned about the need for sadness in healing? Debra and Steve (42:35)grief and sadness is so important and through the really once it’s an hour. The Importance of Sadness in Healing From my perspective, I have learned a ton about sadness because I don’t have a good relationship with sadness. In most cases, it’s a great thing. just, you know, I’m a cup is nine tenths full person all the time and I tend to see the positive and that’s often very good. But it makes it really hard for me to live with other people’s sadness without trying to solve the problem. Bill Gasiamis (43:12)Hmm. Debra and Steve (43:35)And we actually came up with a phrase because sometimes if I get positive when Deb is sad, it just pisses her off. She doesn’t want to be talked out of it. And so we now talk about that dynamic as toxic positivity because, you know, most people think of positivity as such a positive thing. And yet If someone needs to just live in sadness for a little while, positivity can be really toxic. And I think that’s been my greatest learning, maybe growth is sort of understanding that better. I still fall into the trap all the time. devil tell you there are way too many times when, you know, my attempts to cheer her up are not welcomed. but at least I’m aware of it now. ⁓ And a little less likely to go there quite as quickly. Bill Gasiamis (44:38)Hmm. What I, what I noticed when people were coming to see me is that it was about them. They would come to see me about them. It wasn’t about me and what they made them do. What made what their instinct was, was to, if I felt better, they felt better and all they wanted to do was feel better and not be uncomfortable and not be struggling in their own ⁓ mind about what it’s like. to visit Bill who’s unwell. And that was the interesting part. It’s like, no, no, I am feeling unwell. I am going to remain feeling unwell. And your problem with it is your problem with it. You need to deal with how you feel about me feeling unwell. And I appreciate the empathy, the sympathy, the care I do. But actually, when you visit me, it shouldn’t be about you. It shouldn’t be, I’m gonna go and visit Bill. and I hope he’s well because I don’t want to experience him being unwell. It should be about you’re just gonna go visit Bill however you find him, whatever state he’s in, whatever condition he’s in, and therefore ⁓ that I think creates an opportunity for growth and that person needs to consider how they need to grow to adapt to this new relationship that they have with Bill. ⁓ which is based now around Bill’s challenges, Bill’s problems, Bill’s surgery, Bill’s pos- the possibility that Bill won’t be around in a few months or whatever. Do you know what I mean? So it’s like, ⁓ all, all the, ⁓ the well-meaning part of it is well received, but then it’s about everyone has a, has to step up and experience growth in this new relationship that we have. And some people are not willing to do it and then they don’t come at all. They’re the people who I find other most interesting and maybe ⁓ the most follow their instincts better than everybody where they might go, well, I’m going to go and say, Bill, he’s all messed up. ⁓ I don’t know how I’m going to deal with that. can’t cope with that. And rather than going there and being a party pooper or not knowing what to say or saying the wrong thing, maybe I won’t go at all. And they kind of create space. Debra and Steve (46:58)So. Bill Gasiamis (47:01)for your recovery to happen without you having to experience their version of it. Debra and Steve (47:09)Yeah, that’s it. That’s really interesting to hear you talk about it that way. And I would say very generous to hear you talk about it that way, because most of the time when we’ve heard people talk about it’s that because people talk about the fact that because other people don’t know what to say, they don’t say anything or they don’t come. But that then creates an isolation that’s unwanted. You’re talking about it as a, maybe that’s a good thing. They’re giving me space, given their skill or willingness to deal with it. Whereas I think a lot of people feel that when people just disappear because they don’t know what to say, that’s a lack of caring and a lack of engagement. ⁓ interesting to hear your take on it. think there’s a close cousin to this that Deb felt very intensely is that some people in the attempt to be understanding and supportive really took on an air of pity. And that there were some people that that we had to ask not to come if they couldn’t change how they were relating to Deb because it was such a like, ⁓ you poor thing that was incredibly disempowering. Whereas there were other people who had the skill to be empathetic in a supportive way. And so, I mean, in some ways, I think we’ve learned a lot, not that we necessarily do it right all the time, but we’ve learned a lot about how to try to support other people by what has and hasn’t worked in supporting us. Bill Gasiamis (49:20)Yeah, it’s a deeply interesting conversation because people get offended when they need people the most that don’t turn up. And I, and I understand that part of it as well. And then in, in time, ⁓ I was, I was like that at the beginning, but then in time, I kind of realized that, okay, this is actually not about me. It’s about them. They’re the ones struggling with my condition. They don’t know how to be. And maybe it’s okay for them. not to be around me because I wouldn’t be able to deal with their energy anyway. ⁓ yeah. So Deb, what made you turn to advocacy? What made you decide that you’re gonna be an advocate in this space? Finding Purpose Through Advocacy Debra and Steve (50:08)⁓ Feeling purpose and meaning. Survivors? Yes. And caregivers? Yes. Really a lot of risky is really… ⁓ medical, medical. Yeah. I mean, I I, I know what Deb is trying to say, which is, you know, once she got past the life threatening part and kind of on her way and was relatively independent, she was drawn back to saying, I want to live a life that has meaning and purpose. And so how in this new state, can I do that? And Deb, as I’m sure you know by now, doesn’t think small, she thinks big. And so what she’s saying is, yes, I want to help other people, other survivors, other care partners, but really we need a better system. Like I can only help so many people by myself, but if we can actually advocate for a better healthcare system in the United States that treats stroke differently. then maybe we can make a difference for a lot of people. that’s kind of the journey we’re on now. the survivors and caregivers, advocacy is so important to California or even the state. Building the Stroke Onward Foundation Bill Gasiamis (52:05)Yeah, advocacy is very important ⁓ and I love that I Love that you become an advocate and then you find your purpose and your meaning you don’t set out to Find your purpose and your meaning and then think what should I do to find my purpose of my meaning it tends to catch Catch go around the other way. I’m gonna go and help other people and then all of a sudden it’s like, ⁓ this is really meaningful I’m enjoying doing this and raising awareness about that condition that we’ve experienced and the challenges that we are facing. And wow, why don’t we make a change on a as big a scale as possible? Why don’t we try to influence the system to take a different approach because it’s maybe missing something that we see because we’re in a different, we have a different perspective than the people who are providing the healthcare, even though they’ve got a very big kind of, you know, their purpose is to help people as well. their perspective comes from a different angle and lived experience, I think is tremendously important and ⁓ missed and it’s a big missed opportunity if ⁓ lived experience is not part of that defining of how to offer services to people experiencing or recovering a stroke or how to support people after they’ve experienced or recovering from a stroke. ⁓ I love that. So that led you guys to develop the foundation, stroke onward. it a foundation? it a, tell us a little bit about stroke onward. Debra and Steve (53:42)In US jargon, we’d call it a nonprofit. Generally, foundations are entities that have a big endowment and give money away. We wish we had a big endowment, but we don’t. We need to find people who want to support our work and make donations to our nonprofit. And yeah, we now have a small team. ⁓ Deb and I given our age, given that we’re grandparents, we were hoping not to be 24 sevens. So needed people who were good at building nonprofits who were a little earlier in their careers. And we’ve got a small team, a CEO, a program manager and a couple of part-time people ⁓ who are running a bunch of programs. We’re trying to stay focused. We’re trying to build community with stroke survivors, care partners, medical professionals. We’ve got an online community called the Stroke Onward Community Circle that we just launched earlier this year. We’re hosting events, ⁓ some in medical settings that we call Stroke Care Onward to really talk with both ⁓ a diverse group of medical professionals, as well as survivors and care partners about what’s missing in the system and how it can be improved. ⁓ And then a program that we call the Stroke Monologues, which is sort of a a TEDx for stroke survivors where survivors, care partners, medical professionals can really tell their story of the emotional journey in recovery. And we want to use all of that to sort of build a platform to drive system change. That’s kind of what we’re trying to build with Stroke Onward. Bill Gasiamis (55:32)I love that. I love that TEDx component of it. ⁓ People actually get to talk about it and put out stories and content in that way as well. Debra and Steve (55:35)Yeah. ⁓ Yeah. Denver, Pittsburgh, ⁓ Boston, and Oakland and San Francisco. We’ve now done six shows of the stroke monologues and a big part about our work in the coming year. is really trying to think about how that might scale. can we, you know, it’s a very time consuming and therefore expensive to host events all the time. So how we can work with other organizations and leverage the idea ⁓ so that more people can get on stage and tell their story. ⁓ Also how we capture those stories on video and how we can do it virtually. So that’s a big part of what the team is thinking about is, you know, how do we Cause you know, at the end of the day, we can only do as much as we can raise the money to hire the people to do. So, that, that developing a strategy that hopefully can scale and track the resources that it takes to make more impact. That’s kind of job one for 2026. Bill Gasiamis (57:05)Yeah, I love it. Lucky you haven’t got enough jobs. That’s a good job to have though, right? ⁓ So if you were sitting, if you guys were both sitting with a couple just beginning this journey, what would you want them to know? What’s the first thing that you would want them to know? Debra Meyerson – Advice for New Stroke Survivors Debra and Steve (57:12)Yeah. Don’t have a stroke. Bill Gasiamis (57:28)Profound. Debra and Steve (57:29)Yeah. Yeah. I mean, I think, you know, it’s a journey and think of it as a journey and try to get as much as much of your capabilities back as you can. But don’t think of recovery as just that. It’s a much broader journey than that. It’s rebuilding identity. It’s finding ways to adapt. to do the things you love to do, to do the things that bring you meaning and purpose and create that journey for yourself. Nobody else’s journey is gonna be the right model for yours. So give yourself the time, space, learn from others, but learn from what’s in your heart as to the life you wanna build with the cards you’ve been dealt. Bill Gasiamis (58:25)Yeah. What are some of the practices or habits that have helped you guys as a couple, as partners stay connected? Debra and Steve (58:34)⁓ It’s, it’s hard. mean, and we’ve gone through phases, ⁓ where I think, you know, in some ways early on after the stroke, we may have been as close or closer than we’ve ever been. as Deb got better ironically and wanted to do more. Bill Gasiamis (58:39)You Debra and Steve (59:01)that created a different kind of stress for us. ⁓ stress is the key. No, stress is not the beauty. I had so much stress. Yeah. And sometimes I say stress is a function of the gap between aspiration and capability and while Deb’s capabilities keep growing, I think maybe her aspirations grow faster. And the question then says, how do you fill that gap? And so I think Deb struggles with that. And then for me, a big struggle is, so how much do I change my life to support Deb in filling that gap versus the things I might want to do that I still can do? So. You know, when Deb decided to write a book, I really wasn’t willing to give up my other nonprofit career, which was very meaningful to me. And I felt like I was midstream, but we had to find other ways in addition to my help nights and weekends to get Deb help so she could write the book she wanted to write. Whereas when the book came out and we decided to create Stroke Onward, that was a different point in time. And I was sort of willing to. cut back from that career to come build something with Deb. So I think again, we hate to give advice because everybody’s journey is different, but things change and go with that change. Don’t get locked into a view of what the balance in relationship should be. Recognize that that’s gonna be a never ending process of creating and recreating and recreating a balance that works for both of us. Bill Gasiamis (1:01:04)Hmm. What’s interesting. Some of the things that I’ve gone through with my wife is that I’ve kind of understood that she can’t be all things that I needed to be for me. And I can’t be all things that she needs me to be for her. And we need to seek that things where we lack the ability to deal to provide those things for the other person. The other person needs to find a way to accomplish those tasks needs, have those needs met, whatever with in some other way. for example, my whole thing was feeling sad and I needed someone to talk me through it and my wife wasn’t skilled enough to talk me through it, well, it would be necessary for me to seek that support from somebody else, a counselor, a coach, whomever, rather than trying to get blood out of a stone, somebody who doesn’t have the capability to support me in that way. Why would I expect that person to… all of a sudden step up while they’re doing all these other things to get through the difficult time that we were going on to that we’re dealing with. So that was kind of my learning. was like, I can’t expect my wife to be everything I need from her. There’ll be other people who can do that. Who are they? And that’s why the podcast happened because I’ve been talking about this since 2012 and since 2012 and ⁓ well, yeah, that’s 2012 as well. 2012 anyhow. ⁓ I’ve been talking about it since. Debra and Steve (1:02:41)You’re both our roles. You’re saying it and then correcting yourself. Bill Gasiamis (1:02:45)Yeah. Yeah. Yeah. I have a part of me that corrects me as I go along in life. Yeah. Sometimes I don’t listen to it. ⁓ but today was a good one. The thing about it is I have a need, a deep need to talk about it all the time. That’s why I’ve done nearly 400 episodes and those 400 episodes are therapy sessions. Every time I sit down and have a conversation with somebody and I, and even though my wife has a I, ⁓ masters in psychology. I wouldn’t put her through 400 conversations about my stroke every single day or every second day. You know, it’s not fair because it’s not her role. I, ⁓ I talked to her about the things that we can discuss that are important, for the relationship and for how we go about our business as a couple. But then there’s those other things that. she can’t offer her perspective because only stroke survivors know how to do that. And I would never want her to know how to ⁓ relate to me having had a stroke and having the deficits that I have and how it feels to be in my body. I would never want her to be able to relate to me. So ⁓ it’s, that’s kind of how I see, you know, the couple dynamic has to play out. have to just honor the things that each of us can bring to the table and then go elsewhere to ⁓ have our needs met if there’s needs that are left unmet. Debra and Steve (1:04:23)Yeah. Really. Well, it’s good to know that if this is a ⁓ helpful therapy session for you, you won’t mind if we send you a bill. Yeah. Bill Gasiamis (1:04:32)Yeah. Yeah. Send it along with the book. Just put it in the front cover and then, and then I’ll make a payment. ⁓ Well guys, it’s really lovely to meet you in person and have a conversation with you. Have the opportunity to share your mission as well. Raise awareness about the book, raise awareness about stroke onward. I love your work. ⁓ And I wish you all the best with all of your endeavors, personal, professional, not for profit. And yeah, I just love the way that this is another example of how you can respond to stroke as individuals and then also as a couple. Debra and Steve (1:05:18)Yeah, thank you. Well, and we hope you’ll join our online community and that includes the opportunity to do live events. yes. And maybe there are some additional therapy sessions. Yes. On our platform and chat with people and well, all over the place. So yeah, please join us. Bill Gasiamis (1:05:43)That sounds like a plan. Well, that’s a wrap on my conversation with Deborah and Steve. If Deborah’s slow fall off a cliff description resonated with you, leave a comment and tell me what part of your recovery has been the hardest to explain to other people. And if you’re a care partner, I’d love to hear what you needed most early on. You’ll find the links to Deborah and Steve’s work, their book, identity theft and their nonprofit stroke onward in the show notes. And if you’d like to go deeper with me, grab my book, The Unexpected Way That a Stroke Became the Best Thing That Happened via recoveryafterstroke.com/book. Also, you can support the podcast on Patreon by going to patreon.com/recoveryafterstroke. Thank you for being here. And remember, you’re not alone in this journey. 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 Gassiamus. 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. 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Stroke etanercept injection 18 months on: what lasted, what changed, and what Andrew learned after the PESTO trial Some stroke survivors are told a version of the same sentence in hospital: “After three months, what you have is what you'll have.” Andrew Stops didn't buy it, not because he was naïve, but because he needed a reason to keep showing up for rehab when nobody could give him a straight answer about what “recovery” would look like. Four years after his ischemic stroke, and 18 months after a stroke etanercept injection, Andrew is back to share what improved quickly, what continued to evolve, and how he made peace with research results that didn't match his lived experience. The question so many survivors are really asking When people reach out about perispinal etanercept (often discussed as “etanercept after stroke”), they're rarely asking for a science lecture. They're asking: Will this help me get my life back? Will I be the person it works for… or the person it doesn't? How do I decide without being misled by hype, fear, or my own desperation? Those questions are valid. They're also heavy, because the stakes are high: the treatment is expensive, travel can be intense, and the emotional cost of hoping—then not getting results—can be brutal. Andrew's baseline: what his stroke took at the start Andrew's stroke most impacted his right side. Early on, he had: No use of his right arm or hand A weaker right leg Right foot drop A slight speech impediment He worked hard to walk again quickly, using practical supports early (including an elastic extension on his shoe to help keep his foot up). But his bigger mission was clear: find ways to complement rehab—because medical staff couldn't give him a timeline, and he felt a “lack of hope” from their perspective. That's a common moment for survivors: you're doing the work, but you also want a map. The “complement” phase: why hyperbaric helped, even without perfect measurement Before etanercept entered the picture, Andrew leaned on what had helped him before: hyperbaric oxygen therapy (HBOT). He had a history of a brain tumor and had used hyperbaric previously for healing, so he rented a soft-shell chamber at home for three months and went in daily for 90 minutes. Andrew was careful with his claims: he couldn't measure physiological changes in real time at home. But he could measure something important, his ability to cope. HBOT became a daily “warm cocoon” where he could breathe oxygen-rich air and calm his nervous system. For him, that mental-health benefit wasn't a side note. It was fuel. And when you're rebuilding your life after stroke, fuel matters. The etanercept decision: hope, uncertainty, and the reality of the “roll the dice” problem Andrew discovered perispinal etanercept through a media story about Dr. Tobinick's clinic, and after about a year, decided he needed to know he'd tried everything he reasonably could. He crowdfunded to afford the trip and treatment. That detail matters because it introduces the single biggest ethical challenge around treatments like this: Even if you try to stay balanced, it's hard not to hang hope on something that costs time, money, energy, and pride. Andrew doesn't tell people to go. In fact, when people contact him now (he's spoken to more than 50), he's careful: He explains it worked for him, but might not work for them He encourages going without expectation He frames it as “knowing you tried everything,” not a guaranteed fix That's responsible guidance from someone who understands how fragile hope can become when it's under financial pressure. What changed fast (and what stayed improved 18 months later) Andrew's report of early changes is striking not because it proves causality, but because it describes specific, functional shifts: Cognitive fatigue and sensory overload He noticed cognitive fatigue dial down immediately. He still experiences it, but it takes far more to trigger now. The most vivid example: on the way to the clinic, he used an eye mask, noise-cancelling headphones, and had medication ready for overload. On the return flight 24 hours later, he didn't need any of it. He stood in the airport like any other traveler. Pain and cramping A persistent cramp in his right calf eased significantly. Emotional regulation He noticed improvement in emotional control, something many stroke survivors quietly struggle with and often feel ashamed about. Hand function and fine motor control His right hand went from feeling like it moved “in molasses” to loosening up. And here's where the “18 months on” part becomes powerful: Andrew recently discovered he could play scales on his clarinet again, covering holes with independent finger movement, something he hadn't been able to do since the stroke. That's not framed as: “etanercept did this.” It's framed as: recovery kept unfolding. “Your stroke recovery doesn't stop. There's no end date.” The PESTO trial: when research challenges your story Then came the PESTO trial results, which (as discussed in your episode) reported that etanercept was not more effective than placebo in the studied group. This is where Andrew's story gets even more human. He didn't just shrug it off. He described feeling guilt, even fraudulence, because he couldn't reconcile the research headline with his lived experience. That response is deeply relatable: when something helps you, and others don't get the same outcome, it can feel like survivor's guilt, especially when people have spent enormous money and emotional energy. A careful theory: the blood–brain barrier question In your conversation, Bill raises a hypothesis, not a proven conclusion that deserves careful attention: If etanercept struggles to cross the blood–brain barrier in general, could certain people have a more permeable barrier due to factors like stroke, surgery, or radiation therapy (which Andrew had)? Andrew himself wonders if radiation could be part of his “why.” This isn't a sales pitch. It's a research direction, a possible explanation for why outcomes might vary so dramatically between people. If that line of thinking ever becomes clinically actionable, it could change the whole decision-making process for survivors, because the question would shift from “roll the dice” to “are you likely to be a candidate?” What a stroke survivor can take from this without being sold to If you're reading this because you're considering a stroke etanercept injection, here are the grounded takeaways from Andrew's 18-month update: Recovery can continue for years. Don't let a timeline kill your momentum. Treatments don't have to be “proven” to feel meaningful, but meaning isn't the same as certainty. Hope needs guardrails. Don't stake your whole future on one intervention. If you pursue something controversial, protect your mindset. Go in informed, realistic, and supported. You deserve respect, not ridicule, for wanting your life back. If you want ongoing encouragement and tools to navigate recovery (and the emotional complexity that comes with it), Bill's work is built for that: Book: recoveryafterstroke.com/book Patreon: patreon.com/recoveryafterstroke This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Andrew's 18-Month Etanercept Update: Fatigue, Function, and What the Research Says 18 months later, Andrew shares what improved after etanercept fatigue, function, and the tough questions raised by the PESTO trial. Highlights: 00:00 Introduction and Background 06:15 Exploring Treatment Options 08:59 Stroke Etanercept Injection And It’s Impact 12:14 Research Findings and Controversies 17:59 Conversations with Other Survivors 23:26 Reflections on Treatment and Guilt Transcript: Stroke Etanercept Injection – Introduction and Background Bill Gasiamis (00:00) Hey again there everyone. Welcome back to the Recovery After Stroke podcast. Before we get started, a quick thank you to everyone who supports this podcast on Patreon. Your support helps cover hosting costs and after more than 10 years of doing this largely solo, it’s what helps me keep showing up for stroke survivors who need hope and real conversations. A huge shout out to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts. has bought my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, and even the folks who don’t skip the ads, thank you. All of it helps this podcast reach the people who are searching for answers late at night when recovery feels heavy. Now today’s episode is a follow-up many of you have asked for. Andrew Stopps is back, and we’re talking about stroke and etanusept injections 18 months on. We’ll unpack what changed for him, what’s continued to improve and how he processed the PESTO trial results that found Etanercapt wasn’t more effective than the placebo. If you’re considering this treatment or you’re trying to make sense of conflicting stories and research, this conversation will help you think more clearly without hype and without fear. All right, let’s get into it. Bill Gasiamis (01:17) Andrew stops. Welcome back. Andrew (01:20) Thank you for having me. It’s good to back. Bill Gasiamis (01:22) It is so good to have you back. The last time we spoke, was March 26, 2024. At least that’s the date that I uploaded the podcast Andrew (01:30) it would have been before that even, probably a couple of weeks before that. Bill Gasiamis (01:34) Yeah, something like that. So a good 18 months since we last spoke. And the original reason why you reached out and kind of we connected was I think because you had found my podcast, I had maybe had a couple of conversations about Etanercept like, and I had no idea what it was, how it worked, if it worked. And then you reached out and said, hey, I’ve had this injection. I’ve tried it. Why don’t connect about it? Andrew (01:36) So a good 18 months. Bill Gasiamis (02:03) And then we connected and we had a really great conversation and that interview has had like 19 and a half thousand views since then. And then what’s been happening a lot about that interview is heaps of people have reached out to me to say, can I speak with Andrew? Can you connect me with Andrew? Andrew (02:23) And he’s people reached out to me because of that. And also they found me on the interwebs somehow and contacted me that way. So I’ve probably been spoken now, well over 50 people. Bill Gasiamis (02:40) Wow, man, that is fascinating. So and what I love about it is that we put out information. What we hope is we hope people make a more informed decision. Right. That’s kind of the idea is like, how do I help people make people make a more informed decision, especially when I haven’t experienced something and I’m trying to get across the benefits or the pitfalls or, you know, what to avoid on a product. It’s just impossible. But You were very gracious as well as you. I’ve interviewed, by the way, a bunch of other about Etanercept. And one of them was Dwayne Simple. Dwayne also gets a few people who I sent to him that are in Canada because Dwayne is in Canada. He’s had Etanercept and it worked out for And then I’ve spoken to another lady from Australia, Karen. who also a shot or two of Etanercept and had positive results. But of course, Etanercept is extremely controversial. And one of the challenges with it is that it doesn’t work for everybody. And there’s only one way of knowing if it’s going to work is to go and get the injection to pay the money and then to kind of roll the dice and see what happens. Now, that’s what we’re going to talk about today. But before we talk about the new Andrew (03:37) Mm-hmm. Mm-hmm. Bill Gasiamis (03:58) research that has come out, the PESTO trial research. Before we talk about that, we’ll briefly talk about your condition, where you started. We’ll have a real short version of that, where you started, what happened, and then how you ended up overseas experiencing Dr. Tobinick’s procedure, and then update us on what happened in the last 18 months. Andrew (04:17) Okay, so I had my stroke exactly four years ago last Thursday. So I’m a four year old stroke survivor now. And my most damage was done to my right side. So I had no use of my right arm or hand at all. My right leg was weak, but it was okay. But my right foot just fell. I had a slight speech impediment. But otherwise physically that was really it for the stroke. And I worked really hard to get myself walking again as quickly as I could. And so when I got home I could walk but I’d had an elastic extension on my shoe to help keep my foot up. And I… From that moment, I was looking for ways to complement my rehab to help me recover fully from the stroke because the doctors and people in the hospital, no one could say to me like how long, how I was going to be, how much recovery, what I could expect, like anything. was just everyone’s unique. And I understand that, but there was a ⁓ lack of like hope from their perspective. So the first thing we did when we got me home was I’d heard, well, I knew that hyperbaric chambers helped healing. And I knew that because I had a, previously had a brain tumor and I used hyperbaric to help me heal from that. It was really, really good. So we hired one, we rented one for three months and had a soft shell chamber at home, which I went in every day. for 90 minutes and it was fantastic. I can’t say how, if that physiologically helped because I don’t have access to an MRI at home or anything. Yeah, I can’t measure it, but it did wonders for my mental health. Like it was brilliant because for an hour and half every day, I got to sit in this nice warm cocoon shell, they do not over me. Bill Gasiamis (06:01) You can’t measure it. Exploring Treatment Options Andrew (06:15) and listen to really nice music and breathe in almost, you know, pure, very heavily oxygenated air. And so it was like meditation for an hour and half. And the hour and a half went just like that. It was so quick. And I was really sad to have to, you know, give it up after three months. But yeah, it very much helped with my mental health during that time. And I mean, It’s hard to say if it helped me physically, but I certainly got back my ability to move my foot. My arm was another beast though, and that took a long time. That took about two months before it even moved slightly before I could just, you know, move it up and down. So getting back the function of my arm was a longer process. So I kept researching online and finding, you know, other ways that I could help myself to recover. That’s when came across the 60 minutes interview with Dr. Tobinick and the clinic and the lady from Australia. Bill Gasiamis (07:17) Which by the way, 60 minutes has taken down. You can only find that on Dr. Tobinick’s YouTube channel now. Yeah, right. So that’s interesting just as a thing that I observed that people might find interesting as well to hear. It doesn’t mean anything perhaps. Andrew (07:24) really? Interesting. Yeah, I mean, yeah, can be anything anyway, so I found that I watched it. I was really really inspired and I thought well I’ve got to know that I have tried everything like if this is how I’m going to be and this was After one year and I was told that you know after three months or That pretty much what I had after three months was was how I was going to be so I figured after one year, I’ve got to try everything. And so I crowdfunded and had about 30 or 1000. Bill Gasiamis (08:13) You raised how much? US, New Zealand dollars. Andrew (08:22) Yes, so that was to that was to fly that was for the flights accommodation the shots like the whole the whole package And yeah, and we flew out in in February Last last year 2025 Was it last year? can’t remember Bill Gasiamis (08:37) I did 20, 24, 18 months ago. Stroke Etanercept Injection And It’s Impact Andrew (08:40) 2024. And yeah, had the shot and it was it was amazing how fast I found things start to to wake up and recover. By then I had had more movement in my arm, but my hand was very sluggish. And I really didn’t have any fine motor control at all. ⁓ So yeah, that was the 32nd story of Andrew’s stroke recovery. Bill Gasiamis (09:04) Yeah, that’s a cool story. So we did a full deeper dive interview for Andrew’s story, an hour and 18 minutes worth of conversation. And the link to the original interview with Andrew about Etanercept will be available in the show notes, right, and in the YouTube description of this video. So anyone who wants to go back and watch that can do that as well. Now, like I said, it’s had 19,000 views. It’s 521 likes and it has just a ton of comments, just a ton, a ton of comments. Now, one other thing that has happened since then is I haven’t been able to find people who are willing to talk about Etanercept who did not have positive results when they went to Dr. Tobinick’s clinic. just, people don’t want to be interviewed if it’s about that. It seems as though it’s been really hard, right? So. I can’t give this balanced view of here’s somebody who has had good results, here’s somebody who hasn’t had results. They comment on the YouTube comments and they send me emails about it, but they don’t really tell me whether or not they will join me on the podcast to discuss it properly. recently the Griffith University study came out about Perispinal Etanercept and it had some positive results. It didn’t find that it was able to help restore certain functions, et cetera, but it did have an impact on pain relief for some people. Now, after that, the highly anticipated study was the one from the Flory Institute here in Australia called the PESTO trial. I’ll share my screen and I’ll put it on the screen while we chat about it, right? We’re gonna chat about what if. what it found, Andrew, just so that we can bring people up to speed so they can just hear a conversation about it. Bill Gasiamis (10:50) We’ll be back with more of Andrew’s story in just a moment, but if you’re listening right now and you feel stuck, want you to hear this clearly. Recovery isn’t a three month window. It’s not even a one year window. Your brain can keep adapting for a long time. And the real challenge is learning how to keep hope without putting all your hope in one thing. In the second half of this episode, Andrew shares what actually lasted 18 months on. What still improved over the time. And we’ll talk about the biggest question. If the PESTO trial says the Etanercept shouldn’t work better than the placebo, then why do some people still report a night and day difference? Bill Gasiamis (11:30) OK, so this is the PESO trial. Now, I interviewed recently ⁓ Vincent Thijs the doctor who headed the study. but the Flory Institute is basically reporting on his findings. He has presented these findings at stroke conferences around the world. And what was interesting was that this study started in, I think, 2018. And then because of COVID had to be paused, amongst other things. And then finally, all the research was reviewed and it became available at the beginning of 2025. And then it’s been out probably for about seven or eight months now. Stroke Etanercept Injection Research Findings and Controversies And what they found was that the, and they’re being a little bit provocative here calling it a miracle cure, but what they found was that a perispinal etanusept, the arthritis drug, ⁓ was not effective in treating people that were experiencing symptoms because of a stroke anymore. than the placebo. So what they found was that the people on the placebo who ⁓ received the placebo, 56 % of them had a positive result from the placebo as opposed to less than 56 % of people who were actually using the Etanusept. And the reason being, they say, is because the drug doesn’t have the capability of crossing the blood-brain barrier to get to where the ⁓ inflammation is and to actually ⁓ decrease the inflammation. In arthritis, for example, the inflammation is in the joints, which are not part of the brain. There is no blood-brain barrier or some barrier that stops the atanasip from going there. And therefore, when people get injected to experience relief from ⁓ the symptoms of rheumatoid arthritis, they do experience that relief sometimes almost immediately, et cetera. And ⁓ as a result of that, the guys published the study and basically concluded that it is not effective and more research needs to be done to understand why or why not it works for some people and why it doesn’t for others. And I’ve had a couple of kind of ideas since then. And I’ll stop sharing my screen now because we can go back to just you and I, Andrew. And I’ve had some ideas as to how do I then talk to people about that, right? So I know I’ve interviewed Andrew, five other people that I’ve interviewed at least who said they had a positive result. And I should tell people there’s people who had a positive result, right? And then there’s the other people on the other side of the spectrum, which are really hostile saying like, it’s snake oil. My idea is that even if you go there and you receive Etanercept and it works when it’s not meant to and it’s just a placebo working because you’ve got high expectations of it working. You need it to work. You’ve invested $30,000. You you’ve traveled half a way across the world. Even if it works and it didn’t cross your blood brain barrier, to me, that’s a tick, right? That’s like. It worked fantastic. People improve their function. They got their life back. The body is very powerful. It can achieve amazing things. Who cares how it did that? A B, your blood brain barrier might be compromised. So there is a thing called leaky gut. We’ve heard about leaky gut. It is a compromised gut barrier which allows toxins to escape the gut and get into the blood. and causes a lot of autoimmune conditions. The same thing is possible for the blood brain barrier. If you’ve got a really compromised blood brain barrier because you’ve had a stroke or you’ve had brain surgery or something like that, it’s possible. Andrew (15:47) we’ve had radiation therapy, which I have. Bill Gasiamis (15:50) or you’ve had radiation therapy because of previous medical conditions, et cetera, then there could be a more permeable blood brain barrier, which enables the Etanercept to actually penetrate it and get to the root cause of the stroke inflammation or the root location of the stroke inflammation. And therefore, some people through no… ⁓ you know, through no fault of their own, I either have a really healthy blood brain barrier and Etanercept can’t cross it or have a compromised blood brain barrier and Etanercept can cross it. And therefore they experience positive results. But the issue then is how do we know? How can we work that out for people, you know, before they go and drop 30 grand on a treatment that they may not get a result for. Now. That’s my thinking about it, right? But I still send people to you and I still send you these studies as they come up, just so that I can say, Andrew, I need your feedback. I need you to talk to me. I need you to tell me something. Like, where do you stand on all of this? I’m going to keep sending people to you who reach out to me to speak to Andrew because they’re interested. So like, how does that conversation go in your head and then with the people that you connect with? Andrew (17:09) Okay, so having having been a teacher, career teacher, I’m really careful of what I advise people like I would be really careful what I advise my students. So I never say to people, yes, you’ve to do it because it worked for me. God, do do it, do drop it again. I never ever say that I tried to give them the balance for you. And and even though it worked for me, I make sure it’s I’m very clear that they understand that it worked for me, but it might not work for you. Conversations with Other Survivors So you’ve got to go like I did and don’t go with any expectations. Just go, just know that you’ve tried everything you can to help your recovery. That’s all. And so that’s how that conversation usually goes. They ask me lots of questions about what it feels like, what the place is like, what Dr. Tobinick was like. just all the sort of the mechanical questions around it. But generally, it’s, I don’t know whether I should go. And it’s also, I want to go, but my family don’t want to go. And I can’t go because they don’t support me, because they think it’s snake oil. Bill Gasiamis (18:18) Okay, that’s an interesting conversation. So I often try and advise stroke survivors to be careful who they share information with. Not saying that you shouldn’t share information with your loved ones and your family members after a stroke. What I’m saying is like, even in situations where things are not that critical, where you’re not talking about spending 30 grand, I’m just talking about people who have the experience sometimes Andrew where they say, oh, I wanna try this meditation thing, you know, and. somebody hasn’t meditated before, thinks it’s woo woo and says, don’t worry about that stuff. What do you wanna be? Like a hippie or something? There’s those types of people who hang out in our world who do intervene with things that we’re curious about and we wanna kind of shift away from perhaps old habits to new habits, especially around alcohol as well. I found that people would go, aren’t you gonna have one drink? Like what’s the point of going out if we can’t have a drink? It’s like, dude, like I’m a completely different version of myself. I’ve had a stroke, I can’t drink. But understanding how to deal with people like that is a bit of an issue. So then you’ve spoken to about 50 people who have either gone or not gone. Like have some people gone and contacted you and said it worked and some people gone and contacted you and said it hasn’t worked. Andrew (19:40) Yes. Yep. And I’ve. The contact normally starts to go quiet once they actually go, whether it works or doesn’t work. And I usually just get a quick message saying, hey, I went and it worked and that’s great. And, you know, have a good life. You know, I don’t want to keep bugging them. But the people that it didn’t work for have been pretty gutted. Bill Gasiamis (20:03) Right. Andrew (20:04) Because I’ve, you know, even though I’ve tried not to make it something they hang all their hopes on, you know, they still do to a certain extent. And so they come back pretty, not bitter or angry at me, just at the situation, that it didn’t work. And they don’t know where to turn next. Bill Gasiamis (20:22) So they might’ve had all their hopes kind of set on this working, all their eggs in one basket, so to speak, didn’t work and now they feel like maybe they’ve lost hope or they haven’t got another alternative or option. Andrew (20:35) Yeah, yeah. And what I’ve learned in the last 18 months is that your stroke recovery doesn’t stop. There’s no end date. So when you’re told in hospital that after three months that’s what you’ve got, no, no. doesn’t, like your brain is constantly evolving and working and learning and repending itself. If you want to work something and exercise something and rehab part of your body, eventually it’s going to improve. Even if it’s only by a little bit and it’s really slow, it’s going to improve. Bill Gasiamis (21:09) Yeah. So you’ve been 18 months down the track. One of the questions I got asked recently was, does the procedure need to be repeated every couple of years? Does it last? What have you found about how you have changed or experienced your body in the last 18 months? ⁓ Tell us first what you got back and how quickly and then what that led to, what you were able to achieve as a result of what you got back. Andrew (21:34) Yeah, okay. So, um, immediately the things that came back is is that my cognitive fatigue like just just lowered like straight away. Um, and I was when I had the shot, I was exhausted because they take it through a battery of tests. So I like was an hour and a half of tests. And so I was I was done. I was ready to go lie down. Um, And that just lifted like straight away and it didn’t come back. I still get cognitive fatigue now, but I really have to be doing stuff that that really taxes my brain to do it. And or I have to be really tired. But before I had the injection, I would get I would be on the verge of fatigue all the time. So it wouldn’t take much to push me over into it. So that was gone. I had a ⁓ really nasty cramp in my right calf that never went away. That went away. That literally just dialed down as I was sitting there after the shot. the emotional control also came back. Bill Gasiamis (22:42) Uh-huh. Andrew (22:43) which was good. Now, for me, I was, for the first shot, I was only in Florida for 24 hours. So we flew down from Memphis and I had the shot the next day and then we flew back that afternoon. So when we flew down, because of my cognitive fatigue and sensory overload, I had eye mask, had noise-canceling headphones, had like, lorazepam in my pocket. Like, you know, I had all the, you know, all this stuff to, you know, save my senses. When we flew back, I didn’t need any of it, and that was 24 hours later. So I just stood in the airport like any other traveler. And that was… Reflections on Stroke Etanercept Injection Treatment and Guilt Bill Gasiamis (23:26) Yeah. Andrew (23:28) That was the biggest sign that something profound had happened. Bill Gasiamis (23:33) Yeah. Andrew (23:34) The other thing was that my hand, my right hand went from feeling like it was sort of like moving in molasses really slow to loosening up and being more independent. And I found only a month ago that I was able to start to play scales on my clarinet again. So I can move my fingers independently. I could cover the holes with my clarinet here. Bill Gasiamis (23:52) Wow, man. Andrew (23:57) I can the holes in my fingers. It’s something that I haven’t been able to do since the stroke. To be able to play the thing, to be able to just play a scale, just says to me, at some point in the future, you’re gonna be able to play the thing again. Bill Gasiamis (24:11) So things are still improving. Your function is changing still. you, being able to play the clarinet, would you can attribute that to a tenor sept that long ago or just things getting better? Andrew (24:26) I think because it was if I come home and was able to play the clarinet then I would have a definite causality you know so I would rather say the definite yeah it was a tenor step that did it because before I went away I couldn’t even you know I couldn’t pick up things one more right hand so but because it’s been 18 months I think it’s because that that skill has come back Bill Gasiamis (24:50) Yeah, okay. What about work wise? Were you working or not working before the injection? Andrew (24:57) No, no. So I was able to go back to relief teaching. The classroom as a music teacher is ⁓ in a high school is too busy and there’s too many moving parts. So that’s not something I’ll be able to do again, at least not in the foreseeable future. And I don’t know if I want to now. Bill Gasiamis (25:11) Wow. Andrew (25:20) I have done some relief teaching. There are days where I’m in a school and I just feel that it’s a bit too much. And that could be because I had a bad night the night before or it was hot and I couldn’t sleep. And that wasn’t like that before the stroke. yeah, coming up with a new career now has been an interesting journey itself. Bill Gasiamis (25:41) Yeah. So there isn’t a need for another injection or anything like that. Nobody ever told you about another injection or what will happen in two years or anything like that. Andrew (25:51) No, If I can go there and get one, if I think it’s going to make even more improvement, because I had improvement from, you know, from the first. But yeah, there was no compelling sort of needs to go back. And I’m thinking that I probably would like maybe to have a second one, a second trip there and have. having the shot but ⁓ I don’t know I’ll see how my improvement goes. Bill Gasiamis (26:20) Yeah, okay. Andrew (26:22) It’s so hard to One of the things I did do, I had an MRI about two months ago. And it was an MRI to check the status of my tumor and to see where it was. And obviously they also had a look at the stroke site. And comparing the stroke site now to when it was taken when I had the stroke. there’s a day and night difference. Whereas I had a hole in my brain after the stroke, all I had was a little bit of glial, called glial scar tissue. So scar tissue of the brain cells, a little white line in my brain. ⁓ Bill Gasiamis (27:08) as opposed to a round circle of what appeared to be offline or dead brain cells. Yeah, which, you know, it sounds like to me, it’s like where the inflammation was, that area they usually call, they often call, sometimes called the penumbra, which is the area that’s able to be rehabilitated, which is around the site of the stroke, which is offline but not dead, which HBOT targets, the right kind of, Andrew (27:15) Yes. Yeah. Bill Gasiamis (27:38) hyperbaric oxygen therapy can target those as well and try and reduce them. So day and night, like a proper difference between one and the other. Andrew (27:47) Yeah, I was expecting to see when I saw the scan, know, where my brain tumor was and also the big hole and the hole was gone and there was just this like, this is a little, a little line there with scar tissue. Bill Gasiamis (28:01) Yeah, fabulous. How long has the brain tumor been there for? Andrew (28:05) 20 years. Bill Gasiamis (28:07) Okay, and what does it do just sort of sit around and ⁓ Andrew (28:10) Yeah, so ⁓ what happened is it just gradually grows bigger and bigger and bigger and then eventually if you don’t get it treated, it crushes your brain stem and that kills you. So I had mine irradiated 20 years ago and it’s got growing and it’s just started dying off and now it’s just like a… dead mess in there and they check every four years to make sure it hasn’t done anything naughty and It hasn’t so they actually said of this last scan look it hasn’t changed in the last 12 years, so no more scans Bill Gasiamis (28:41) I hear you, okay. So it’s benign now. Andrew (28:46) Yeah. Bill Gasiamis (28:47) Yeah, okay. So you’ve through the rigor, mate. You’ve had an interesting neurological experience, Andrew (28:54) Yeah, yeah, yeah, yeah, feels like my brain’s out to get me. Bill Gasiamis (29:00) Yeah. Well, seems like the interventions have been really helpful in prolonging your life and then your life experience, like how you go about life. So as far as you’re concerned, like it’s all it’s all. You know, it’s been a good outcome, both both interventions. Andrew (29:19) Yes. Yeah. Yeah, I think so. I mean, my biggest challenge this year has actually not been the stroke or the brain tumor, but it’s been the medications for stroke to prevent another one. So my stroke was caused by an overactive adrenal or adrenal glands producing too much aldosterone. Bill Gasiamis (29:31) What man which man say you want? Andrew (29:43) And that was only diagnosed and found last year. So What was happening is that my body was? Was was keeping salt it was it was send my blood pressure sky-high and then crash it down And for 10 years we thought that was anxiety. But what it was was that because my blood pressure wasn’t consistently high, I could go to the doctors and I could be normal. And then my other doctors didn’t have high blood pressure. It was not consistent. So I was just treated for anxiety and given a sort of a low dose blood pressure medication. But actually what it was is both glands like over producing this hormone and that’s what gave me the stroke. So they’ve they’ve given me a hormone suppressant which helps, but they’ve been trying to. to juggle multiple types of blood pressure medication to also bring my blood pressure down to a consistent normal. And so up until about three weeks ago, my blood pressure was still all over the place. And they had me on a really nasty cocktail at one point this year where I literally could not function. I couldn’t even get up. It suppressed my whole system so much. that every time I stood my blood pressure would drop 50 points and I would almost pass out. So I was like a zombie. ⁓ It was just the combination of too many blood pressure medications at once. And finally, I’ve seen a different specialist and he changed my medication and I’ve just got one little pill at the minimum dose and it’s actually stabilized my blood pressure to normal. Bill Gasiamis (30:51) All right. Righto, that’s good. Andrew (31:18) So like when I took it today, was 122 over 72. So it hasn’t been like that for I don’t even know how long. Bill Gasiamis (31:25) Yeah. Fantastic, what kind of stroke did it cause? Andrew (31:31) are ischemic, so a clot. Bill Gasiamis (31:34) ⁓ huh, okay. Wow, man. What an interesting journey you’ve been on. And this insight into Etanercept and how and why it might work for some people and not for others is probably helpful for it again, for a whole bunch of people to hear and kind of get a better understanding about scientifically speaking, Etanercept is not a viable solution for people who have had stroke and there will be some people who will become all, what’s the word? Like they will, they’ll be all, this is snake oil stuff. And then there will be people who brag about it as being the best thing they’ve ever done, which seems to be kind of the camp that you’re in. I think, no, no, no, no. I mean, it’s one of the best things you’ve ever done with regards to your stroke recovery, right? Andrew (32:18) I don’t feel like complaining about it though. Yeah, yeah, and I found that when I got the results for the for the pesto test I really had to do a lot of soul searching because because I couldn’t explain to myself Why it seemed to have worked for me and yet the study was saying hey, doesn’t really have any effect and and I had to to Bill Gasiamis (32:36) Wow. Did you feel remorse or guilt about that? Wow, Wow. Andrew (32:47) Yes, very much. I felt like a fraud. Because why? I couldn’t explain how I had such a huge night and day difference. And that couldn’t be placebo and it’d be still working 18 months later. Bill Gasiamis (33:08) Yeah, I think our hunch about the blood brain barrier is where the research needs to go. And I don’t know how you investigate the blood brain barrier. But if you can go there and investigate the blood brain barrier and if you can understand who has a compromised blood brain barrier and therefore. Andrew (33:15) Yeah. Bill Gasiamis (33:31) due to a compromised blood-barrier barrier, a candidate for a Etanercept I think that’s kind of where it needs to go. Because the biggest issue that people have with clinics who offer a Etanercept perispinally, like Dr. Tobinick’s, the biggest issue that people have that makes it hard for them to make a decision is will I be the right candidate? Will I be the one who will it work for? Or will I be the one that it doesn’t, you know? But I… I find it very fascinating that you would respond that way, that you would feel guilty and remorseful that it worked for you and the pesto child says it shouldn’t have. Andrew (34:10) I feel guilty that it worked for me and didn’t work for someone else. You know, as well. Yeah, yeah, I mean, it’s like survivor’s guilt in a way. Yeah, that’s that and that’s how I felt. so the way I’ve thought of it is, well, OK, if it was placebo, it worked for me. Bill Gasiamis (34:14) Yeah. just wishing for the best for everybody. Yeah, I can relate to that. Yeah. Andrew (34:37) like it just it worked for me whatever it was it worked for me so and that’s that’s that’s all I can all I can say but I think this blood brain theory is is a good one and I would like to I would like to research and understand what what makes the brain leaky like what what events can make your brain Bill Gasiamis (34:41) Yeah. Yeah. Andrew (35:00) ⁓ better suited to receiving Etanercept Like for me, probably the main cause could have been the fact that I had radiation on my brain years ago. Bill Gasiamis (35:05) Yeah. Andrew (35:13) Or it could be that I have a high blood pressure for 10 years. Or it could be I have my appendix out when I’m 17. But I would like to do some research into what it is, what factors make people more likely to have a leaky brain. Bill Gasiamis (35:17) Who knows? Yeah, I think that’s a great thing. I want to research that too, because I have known about it. I’ve understood it. I appreciated that I might be somebody who has had a leaky brain because of the strokes that I experienced, the brain surgery and all the stuff that I went through. And I know that if you restore the blood brain barrier, you can really decrease the fatigue that happens to people after a stroke. And you can make it impenetrable again to toxins. and heavy metals and all that kind of stuff, which is often the cause of real chronic neurological fatigue, even in people who haven’t had a stroke, who are, quote unquote, normal. So that’s fascinating. I really appreciate your continued willingness to have conversations about this topic and sharing your story more than once with me. And then also being being an ear to the people who are curious about whether or not they should go down this path and then kind of just like, you know, being honest about your story, sharing what happened to you, what you experienced and even your own reservations because I don’t think you have anything to, and you probably know this cognitively anyway, right? You don’t have anything to be guilty about or feel bad about or. anything like that. But I understand why emotionally you might go down that path because you’re a guy that cares deeply for other people. You appreciate how hard it is for people to go through stroke and you wish them the same solution or other solutions that you had so that we don’t have to suffer. I know exactly what’s behind it. Andrew (37:08) Yeah, yeah, that’s exactly right. Yeah. Bill Gasiamis (37:12) Yeah. Well, hopefully this continues the conversations to give people more things to think about. Leave us a comment in the YouTube comments section. Reach out via email. Yeah, drop us a comment. Reach out to us and we’d be happy to continue the conversation, support you, guide you. Just being here and I don’t know, help you make a more informed decision. That’s all we can do. We’re not going to suggest. Andrew (37:35) Yeah, definitely. Bill Gasiamis (37:41) that you should or should not go and experience Perispinal Etanercept one way or another. Bill Gasiamis (37:46) Well, that was Andrew Stopps again. What a fascinating conversation. If today’s episode connected with you, I’d love to hear your thoughts in the YouTube comments, especially if you’ve looked into Etanercept Try it. I decided not to. Your experience can help someone else make a more informed decision. And if you found this helpful, please subscribe on YouTube and follow the podcast on Spotify or Apple podcasts. Reviews and comments genuinely help more. stroke survivors find these conversations. If you want to go deeper, you can grab my book at recoveryafterstroke.com slash book. And if you’d like to support the podcast and help keep it going, you can join us on Patreon at patreon.com slash recovery after stroke. Thanks again for being here. You’re not alone in this recovery journey and I’ll see you in the next episode. The post Stroke etanercept injection 18 months on: Andrew's update after the PESTO trial appeared first on Recovery After Stroke.
Foot Drop Solutions After Stroke Without an AFO: Ken Kerns' “New Way to Walk” (Plus Aphasia Recovery After a 10-Day Coma) Ken Kerns didn't just wake up from a stroke. He woke up from a 10-day medically induced coma after an AVM brain hemorrhage, facing a reality that would shake anyone's identity: right-side paralysis, aphasia, and the exhausting work of rebuilding everyday life from scratch. And then, because stroke recovery loves a twist, one of the nurses kept calling him Frank. That moment might sound funny now, but in the early days of brain injury, it landed like a true identity crisis. Ken would later turn that experience into a book title: Anything But Frank—and into a bigger message that matters for every survivor and caregiver: recovery isn't one problem to solve. It's dozens. And you solve them one by one. This episode covers the full story (AVM, coma, aphasia, purpose). But it also includes something many survivors are actively searching for: foot drop solutions after stroke without an AFO—specifically, a practical tool Ken found that helped reduce falls and made walking feel more natural again. The day everything changed: an AVM hemorrhage at home Ken's stroke happened early in the COVID era, when work had shifted home and hospitals were under intense strain. He was preparing for a meeting when he went to the bathroom and collapsed. His wife, Carrie, couldn't open the door—he'd fallen behind it. She called emergency services. Ken has no memory of those moments. Like many survivors, he had to rebuild the story from what others told him. What followed was terrifying uncertainty. A neurosurgeon reviewed imaging and initially feared a tumor (Ken had a history of kidney cancer years earlier). Carrie was allowed into the emergency room to say goodbye because it wasn't clear Ken would survive surgery. But in surgery, the cause became clear: an arteriovenous malformation (AVM). The surgeon removed it, and Ken was placed into a medically induced coma for 10 days. Aphasia: when your brain is fast… and your mouth won't cooperate When Ken woke, his deficits were immediate and brutal: Paralyzed on the right side Unable to speak Had to relearn swallowing Severe aphasia that improved over time One of the most honest parts of Ken's story is how confusing aphasia can feel from the inside. Ken described it like this: his cognition is there, answers are forming—yet the “path” to speech is obstructed. “My brain works much faster than my mouth.” “There used to be a direct path… and now that path is worn… covered by weeds.” That metaphor matters because it reframes aphasia as a communication access issue—not a lack of intelligence. Ken found a major turning point through a Minnesota-based communication group: Minnesota Connect Aphasia Now (MNCAN). Practicing weekly conversations (with support from a speech-language pathologist) rebuilt something more than words. It rebuilt confidence. He went from relying on Carrie to order food or check in at airports… to speaking up again in real-world settings. And eventually, he didn't just participate—he stepped into leadership and became president of the board. If you're living with aphasia, this is one of the most powerful “hidden wins” in recovery: you don't have to wait until speech is perfect to start practicing in the world. “Anything But Frank”: identity, emotion, and meaning after stroke In the hospital, a nurse repeatedly called Ken “Frank.” It sounds like a paperwork mistake—but for someone fresh out of coma, it triggered fear and confusion: Did I die? Am I someone else? Who will I FaceTime? When the iPad finally turned around and he saw Carrie, he cried—not from sadness, but relief. Later, Ken's siblings did what siblings do: they turned the story into a running joke. They called him Frank. Ken's response became a line that carried him forward: Call me anything but Frank. That phrase became the title of his book and a symbol of what recovery often is: reclaiming identity while your body and brain renegotiate who you are. Ken also spoke candidly about emotional recovery. In rehab, he felt intense anger—then shifted into a daily question that gave him structure: “Guide my day. Show me the purpose.” Whether you share Ken's faith or not, the takeaway is universal: When recovery feels chaotic, survivors need a meaningful frame to keep going. Foot drop solutions after stroke without an AFO: the “new way to walk” Ken found Foot drop is one of those stroke problems that seems “small” until it isn't. It can quietly steal independence through trips, falls, and fear—especially on stairs, uneven ground, and (in Ken's case) Minnesota snow and ice. Ken described classic foot drop challenges: Difficulty lifting the foot Frequent falls Trouble on the stairs Reduced confidence walking He used an ankle-foot orthotic (AFO), which helped. But later, he discovered a product that—for him—became a workable AFO alternative: Cadence shoes. Ken's experience was specific and practical: The shoe design helped his foot glide during the swing phase Then grip when the weight shifted forward He reported no falls since wearing them He said he no longer needed his AFO He felt stair descent improved because the shoe gripped rather than sliding off the step This is crucial: this isn't “one weird trick.” It's a tool that matched Ken's exact pattern of movement, environment, and needs. If you're exploring foot drop solutions, here's the smart way to use Ken's story: Treat tools as experiments, not guarantees Trial safely (with your physio/OT if possible) Test on the surfaces that actually challenge you (stairs, carpet edges, outdoor paths) Measure results: falls, near-falls, fatigue, confidence, walking speed Ken also used another independence tool: a left-foot accelerator to return to driving while his right ankle remained immobile. That's a reminder that “walking recovery” isn't only rehab—it's also smart adaptation. What to take from Ken's story (even if your stroke was different) Ken's recovery wasn't a straight line. It was many small wins, stacked over time. If you're in the thick of it, consider this simple plan: Name the real problem (not “I'm broken,” but “I trip when my foot drags.”) Practice communication in community (groups like MNCAN show what's possible) Choose tools that reduce risk today (falls steal momentum) Rehearse what matters (Ken practiced speeches until they were automatic) Protect your inputs (Ken avoids depressing “poison” media that drains recovery energy) And if you're a caregiver: the biggest gift is often helping your person keep experimenting—without pressure, without shame, and without rushing the timeline. Keep going with the full episode Ken's “new way to walk” is a valuable segment—but the whole episode is the real promise: AVM stroke recovery, aphasia progress, identity rebuilding, and the meaning that can emerge after trauma. If you want more stories like this (and practical tools survivors are actually using), you can also check out Bill's book and support the podcast here: Book: The Unexpected Way That A Stroke Became The Best Thing That Happened Patreon This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence Ken woke from a 10-day coma after an AVM stroke, unable to speak or move his right side, then rebuilt his voice and his walking confidence for life. Book – Anything but Frank: A Journey of Healing, Patience, and Rediscovery Archway Publishing Amazon (U.S.) Amazon (Australia Additional Resources: Minnesota Connect Aphasia Now (MnCAN) Cadense Adaptive Shoes The Transcript Will Be Available Soon… The post Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence appeared first on Recovery After Stroke.
PESTO Trial Results: What Stroke Survivors Need to Know About Perispinal Etanercept If you've spent any time in stroke recovery communities, you've probably seen the same pattern: a treatment gets talked about with real intensity, people share personal stories that pull you in, and suddenly you're left trying to sort hope from hype from “maybe.” When the decision also involves significant cost, that uncertainty can feel even heavier. That's exactly why I recorded this episode: to help stroke survivors and their families understand the PESTO trial results in plain language without drama, without attacks, and without jumping to conclusions. In this interview, Professor Vincent Thijs explains what the PESTO trial set out to test, why it was designed the way it was, and what the results can (and can't) tell us about perispinal etanercept in stroke recovery. The real problem: not “hope vs skepticism”… it's confusion If you're a stroke survivor, you're already doing something heroic: you're living inside a recovery journey that demands patience, grit, and constant adjustment. The challenge isn't that you “don't want to believe” in something. The challenge is that it's genuinely hard to make an informed decision when: People report different outcomes Online conversations become polarised fast Scientific studies use unfamiliar language The same treatment can be described in completely different ways depending on who you're listening to My goal here isn't to tell you what to do. It's to help you think clearly, ask better questions, and understand what the best available evidence from this trial actually tested. What the PESTO trial was trying to investigate (in simple terms) Professor Thijs explains that the PESTO trial was designed in response to strong community interest. Stroke survivors wanted to know whether the way perispinal etanercept is currently administered in some settings could be demonstrated to work under the standards used for medicines to become widely accepted as part of routine care. So the researchers designed a randomized, placebo-controlled clinical trial. In this type of study: A computer assigns participants to either the treatment or a placebo Participants and clinicians are kept “blinded” (they don't know who got what) Outcomes are measured in a consistent way at set time points In the PESTO trial, the focus was on stroke survivors with moderate to severe disability and reduced quality of life. The primary question was straightforward: Does quality of life improve after one or two injections compared with placebo, over the measured timeframe? Why this study looked at quality of life (not one symptom) One key detail Professor Thijs highlights is the design choice: the trial didn't only target one issue, like pain or walking. It aimed to be more “pragmatic,” reflecting how treatment is used in real-world settings where people seek help for different post-stroke challenges (mobility, fatigue, speech, cognition, pain, and more). That means the main outcome wasn't “Did walking speed improve?” or “Did pain reduce?” It was broader: Quality of life at 28 days And again after the second injection timeframe (56 days total) This matters because your results can look different depending on what you measure. A trial targeting one symptom might see a signal that a broad quality-of-life measure doesn't detect (and vice versa). What the PESTO trial results found In Professor Thijs' words, the trial did not show a difference in quality of life between the treatment and placebo groups at the measured time points: No clear quality-of-life improvement at 28 days No clear improvement after two injections at 56 days That's the central outcome. But there's another finding that grabbed my attention—and it's one many listeners will find surprising. Quote block (mid-article): “We saw that 58% of the people also had that improvement [with placebo] and 53% had it with etanercept… our initial guess was very wrong.” — Professor Vincent Thijs The “placebo signal” and why it matters A strong placebo response doesn't mean “it was all in their heads.” It means that in a blinded clinical trial, people can improve for multiple reasons that aren't specific to the drug itself, such as: Expectation and hope Natural fluctuations in symptoms The impact of being monitored and supported Regression to the mean (symptoms often move toward average over time) The structure and attention that come with trial participation Professor Thijs describes how, during the blinded phase, participants reported improvements in a variety of areas (like sensation, vision, speech). The crucial point is: the team didn't know who had a placebo or an active treatment at the time, which is exactly why blinding exists. For you, the listener, this is a reminder of something empowering: Personal stories can be real and meaningful—and still not answer the question of efficacy on their own. “Am I a candidate?” The trial's honest answer: we don't know how to predict it (yet) One of the most important parts of this conversation is the desire to identify who might benefit most. Professor Thijs explains that the team looked at subgroups (for example: age, sex, severity, diabetes, time since stroke). In this trial, they didn't find a clear subgroup where the treatment stood out as reliably beneficial compared with placebo. He also adds an important caveat: subgroup analysis is difficult, especially in trials that aren't extremely large. So the absence of a clear “responder profile” here doesn't automatically prove none exists—it means this trial didn't reveal one. What this episode is (and isn't) saying Let's keep this grounded and fair. This interview is not about attacking any person, provider, or clinic. It's not about shaming stroke survivors who tried something. It's not even about telling you that you should or shouldn't pursue a treatment. It is about this: Understanding what the PESTO trial tested Understanding what the results showed within their timeframe Knowing the limits of what the trial can conclude Using evidence to reduce confusion before making big decisions A simple “clarity plan” before you decide anything big If you're considering any high-stakes treatment decision, here's a neutral, practical way to move forward: 1) Ask: “What outcome matters most for me?” Is it pain? walking? fatigue? speech? cognition? daily function? quality of life? A treatment might be studied for one outcome and discussed online for another. 2) Ask: “What does the best evidence say—specifically?” Not “Does it work?” in general, but: In what population? Using what method? At what dose? Over what timeframe? Compared with what? 3) Ask: “What are my options and trade-offs?” Talk with a qualified healthcare professional who understands your medical history, risk factors, and rehab plan. Ask about: Potential risks and side effects Opportunity cost (what else could you do with the same time, money, and energy?) Evidence-based rehab and supports that match your goals Listen to the full interview If you want the clearest explanation of the PESTO trial results—from the lead researcher himself—listen to the full episode with Professor Vincent Thijs. And if you'd like to support the podcast (and help keep these conversations going for stroke survivors who need hope and clarity): Bill's book: recoveryafterstroke.com/book Patreon: patreon.com/recoveryafterstroke Medical disclaimer This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. PESTO Trial Results (Etanercept After Stroke) | Interview with Professor Vincent Thijs Confused about perispinal etanercept after stroke? Prof Vincent Thijs explains the PESTO trial results clearly, calmly, and evidence-first. More About Perispinal Etanercept: Etanercept Stroke Recovery: Wesley Ray's Relentless Comeback Dwayne Semple's Remarkable Stroke Journey and Perispinal Etanercept Etanercept for Stroke Recovery – Andrew Stopps Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction and Overview of the PESTO Trial 04:19 Design and Objectives of the PESTO Trial 11:23 Recruitment and Methodology of the Trial 18:31 PESTO Trial Results and Findings 24:28 Implications and Future Directions for Research 32:15 Conclusions and Final Thoughts Transcript: Introduction: PESTO Trial Results Bill Gasiamis (00:00) Hello and welcome back to Recovery After Stroke. Before we get started, a quick thank you to my Patreon supporters. Your support helps cover the hosting costs after more than 10 years of me doing this show solo. And it helps me keep creating episodes for stroke survivors who need hope and practical guidance. And thank you as well to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts. buys the book and even to those of you who don’t skip the ads. Every bit of that supports keep this podcast going. Now today’s episode is about the PESTO trial results and I’m interviewing Professor Vincent Theis. If you’ve ever felt confused by the conversation online about perisponal antenna sept, some people sharing positive experiences while others are feeling disappointed and plenty of strong opinions in between, this episode is designed to bring clarity. We talk about what the PESTO trial set out to test, how the study was designed, what it found within the measured timeframes and what the results can and can’t tell us. Just a quick note, this conversation is educational and not medical advice. Always speak with a qualified health professional about your situation. All right, let’s get into it. Professor Vincent Dase, welcome to the podcast. Vincent Thijs (01:24) Thank you for having me, Bill. Bill Gasiamis (01:26) I’m really looking forward to this conversation. Atenosept is one of the most hotly discussed topics in stroke recovery. And there’s a lot of misconceptions about whether or not it is or is not efficacious. And while there’s a lot of anecdotal evidence where some people have had positive outcomes from injections, there’s also a lot of people’s feedback, which is very negative about their experience with the Etanercept injections and the lack of results. So today, the reason I reached out is because I wanted to get to the bottom of the findings of the PESTO trial. And I’m hoping that you can shed some light on that. The first question basically is, can you start by explaining in simple terms what it was that the PESTO trial set out to investigate? Vincent Thijs (02:22) All right. The PESTO trial was in response to community members, stroke survivors, wanting to find out whether the current practice of administering Etanercept has done in the U.S. in private practice. In Denmark, I hear there are some sites that provide this treatment. Whether the treatment and genders can be actually proven according to the standards that we use in the pharmaceutical industry to get it to become accepted as a standard of care treatment. For that, you need to do what we call a randomized controlled clinical trial, preferably two that show evidence that treatment does what it’s set out to do. And that’s why with this background and the community pressuring the minister several years ago, Mr. Hunt at the time, to fund a trial that would help answer that question. Design and Objectives of the PESTO Trial There was a call was set out to do this trial and several groups in Australia applied and then an independent committee decided to award the trial to the PESTO study group. And then we tried to design this trial to give an answer. So it’s mostly about people that have moderate to severe disability after their stroke that have reduced quality of life. And We wanted to know, does their quality of life improve when Etanercept is administered? And we wanted to test whether one or two injections were needed. Because that’s what we heard from stroke survivors that from Australia and internationally that went over to the US. Well, this is how it’s done. You get one or two injections and there was a paper that had shown big effects with one injection. So that was the primary endpoint, but then we also looked at whether two injections could help. And when you design a trial, you have to make a decision, will we focus on people with. pain after stroke, or will we look at people who have mobility issues or speech issues or cognitive issues? And we saw that current clinical practice actually was people with various impairments after stroke were accepted and received the treatment. And what would have been the advantage of doing say only mobility or only pain? Well, you can then look at the outcome of pain or mobility, does it improve? Or is your cognition improved? But because we wanted to be pragmatic and we know that recruitment in clinical trials needs to reflect how is current practice. So we thought let’s put in all the people with moderate to severe disability, whatever their impairment after stroke and reduce quality of life. And then we looked at quality of life as an outcome rather than an individual impairment. And so what we did then was to use the randomized technique and where it’s left up to the computer to decide what treatment a person will receive, the active Etanercept or a similar looking placebo, and then look at 28 days and we had to make a decision what makes sense 28 days, what is practical. to see whether that injection then had improved quality of life. And then we did another injection again with a placebo or the active drug. And then after 28 days again, we looked again whether that had made a difference. So we have people that had received two times the placebo, one time the placebo, and one active injection. And then we have people that had received two active injections. And then we were able to compare those and see whether they had made bigger improvements if you receive two injections versus one or zero. Unfortunately, we couldn’t show a difference in quality of life at 28 days. And we also couldn’t show an improvement at 56 days after people had two injections. But that was in a nutshell how we designed and the background of the study. Bill Gasiamis (07:25) So the main difference then between the Griffith University study and your particular study was that they did go after a specific improvement in one area, I believe. it in? Okay. So although those guys went after pain, you guys went after just a general improvement in quality of life after the injection and your stroke survivors. Vincent Thijs (07:39) Mostly, think. Bill Gasiamis (07:54) would have been as far as 15 years post stroke. Is that right? Vincent Thijs (07:59) Yes, correct. We wanted to have people early after stroke between one and five years, and then also between people five to 15 years after stroke. That was also for practical reasons. Once you start trial, you see how good recruitment is, how many people want to participate in the study. And we saw that if we went to up to five years. Recruitment was relatively slow. So we added this additional group of people later on after their stroke. that because many people, I’m five years, I’m six years after stroke. Why can’t I get the treatment? And you know, so we also wanted to expand the pool. And that’s also what happens in clinical practice. Current clinical practice, I don’t think the sites and the US and they would refuse the patient six years or so. We just wanted to reflect the people that we see on the website going for this treatment. Bill Gasiamis (09:01) Yeah, yeah. And then the difference between the Griffith trial and your trial as well was the actual dosage of Etanercept the amount that was in the injection. I do believe that your trial was a 25 milligram injection. And I believe that the Griffith University trial was 25 milligram. injection to 50 milligram injection. Vincent Thijs (09:34) Yeah, we just based on what people told us they received when they went to the clinic, also the other sites and then also 35 milligram was chosen because that’s in the patent for the street. Bill Gasiamis (09:49) Okay, I see. So you’re trying to as much as possible mimic what was happening out there in in the private practice Vincent Thijs (10:00) We wanted to answer the question, is current clinical practice, is that beneficial? And that’s what sort of what the call was to do a clinical trial in current clinical practice. You can, you have to make decisions, right? And I think this was the most relevant for a stroke survivor. Bill Gasiamis (10:17) Now that’s really interesting that stroke survivors were able to twist the arm of a minister to get the funding to begin that process of the trial. How long ago did this actually start? Vincent Thijs (10:28) I think it was 2016, 2017 or so. So it takes a while to get the minister and then I think that the trial started in 2019. took a while to complete as well. Bill Gasiamis (10:43) Right understood. Okay So then you recruit people they come along and they go through the trial through the particular trial How does that work on the day do they turn up are they admitted? We’ll be back with more of professor face explanation in just a moment But I want to pause here because if you’ve ever felt stuck between hope and uncertainty, you’re not alone When you’re recovering from stroke, you’re constantly making decisions and some decisions feel high stakes, especially when confronting information that’s conflicting. Recruitment and Methodology of the Trial In the second half of this conversation, we get into the parts that really help you think clearly. What the trial results do and don’t mean, and why placebo responses matter in blinded research, and how to frame smarter questions before you commit time, money, or energy to any path. If you want to support the podcast and keep these episodes coming, You can grab my book at recoveryafterstroke.com/book or join the Patreon at patreon.com/recoveryafterstroke All right, back to the episode. Vincent Thijs (11:51) All right, so we recruited from a variety of sources. So we had kept a log of people that were interested in this. We had a Facebook post in New Zealand, for instance, where we recruited as well. We had people from the Stroke Clinical Registry that were approached. We had a website and people could register their interest if they were doing a search online to participate in clinical trial. So the variety of sources and then we have to determine eligibility that was mostly done either via an in-person visit or remotely via telehealth. We tried to get their medical information, what type of stroke they had. And then we also questioned whether they had this modified rank in scale, the disability they had, the impairments they had from their stroke. so then people came. they were considered eligible, then we scheduled a visit and they would typically come in no overnight stay needed. It was a day procedure that was done. People were then receiving another questionnaire on the day itself to measure their quality of life and other measures like their fatigue levels and how much help they required, etc. And then we proceeded with the injection, which was done. We had bought a special bed that was able to do the, the, the tilting that was required. So we set the people up, injected and then tilted the table. so, we received the drug. It was prepared independently by the pharmacist. So the pharmacist, they took the drug off the shelf or the made the placebo. and they made sure it looked exactly alike. So then somebody from the trial team picked it up from the pharmacist. The pharmacist didn’t tell, of course, what it was. And then the administration happened. So the doctor who administered and the participant did not know what they received. So after the procedure, they were left like this for four minutes. And then after four minutes, people could sit up again. And we waited about half an hour. then we asked them how they were doing, whether there were any adverse reactions, ⁓ and ⁓ then after that half an hour of observation people could go back to their habitual situation. ⁓ it’s a very simple ⁓ procedure to do. Bill Gasiamis (14:35) I believe there was a was there 126 participants Vincent Thijs (14:40) Yes, 126 people participated. had anticipated a little bit more people to participate. So we had hoped 168, but recruitment fell flat after a while and we were not able to find more people to recruit. So we made a decision and then, you know, these clinical trials, they have some funding ⁓ and they require the treatment team to be paid, et cetera, and that ran out. So we had to stop at a certain time. Bill Gasiamis (15:13) Was the study stopped early because of a decrease in the amount of funding or was there an issue with the funding at some point? Vincent Thijs (15:23) Funding ran out. You hire people for a certain amount of years and then you have fewer patients than you anticipate. So you have to stop. Bill Gasiamis (15:32) huh, okay. So would that affect the outcome of the trial? Would you say the lack of funding or the lack of the ability to take the trial further? Vincent Thijs (15:42) Yeah, well, what we had when you do the trial, when you plan the trial, you say, well, this is what we’re going to expect in terms of efficacy. You have to make a guess and say, well, that many people will have an improvement in quality of life if we give them the placebo and that many people will have an improvement in quality of life with the trial drug. And we had thought that about 11 % would improve with the placebo based on an earlier study. And then we had to make a guess because nobody had done this type of study on what Etanosap would provide. But reading the report that was published several years ago now, where 90 % of the people reported improvement in their impairments, we thought, well, Let’s not go for 90%, but a 30 % improvement. And so that was based on that we needed 168 people to participate in the trial. So that was what we call the pre-planned sample size estimation, which is a guess. When we stopped at 126 participants, actually we saw that the results were very different. There was not that 11 % actually in the placebo arm. saw that 58 % of the people also had that improvement and 53 % had it with ethanosab. So our initial guess was very wrong based on some statistical advanced statistical techniques we have. We have quite a lot of power to estimate whether there was a difference. So I think the trial can provide us an answer. It’s large enough to give us an answer about this particular question. Is current clinical practice in these people with this range after their stroke, does it improve? quality of life after a month or after two months. I’m not speaking about early improvement, I’m not speaking about six months down the line. We only can decide what we see in this study. Bill Gasiamis (18:05) So you have some limitations because you can’t have the funding to test one month, two months, six months, 12 months. You have the funding to basically meet the design of your study and then you can report on that. Now what’s really interesting is that the placebo had such a large result. PESTO Trial Results and Findings Vincent Thijs (18:34) What kind of things were people reporting that improved for the people who had the placebo injection?Look, this is, course, when we were in the blinded phase, when neither myself or my colleagues who did these scales, we were totally blinded. And that’s, remember vividly people saying, it didn’t do anything for me. But then there were also people said that they could see again. And so people that had improvement in sensation. Some people had improvement in their speech. there were, we, we observed these things, but we didn’t know whether they were active or placebo. And then surprisingly we had some people in whom we thought, they must have had active drug that turned out to have the placebo, but that’s years after, right? Because it takes a little bit of time to accumulate a sufficient number of patients. And we were only reporting and breaking the blind when the trial was finished. because otherwise you may be biased in all your analysis, et cetera. You don’t want to do that. So you wait until the end of the study to break the blind. And that’s very frustrating for the participants because there were many people that said, I must have had the placebo because it didn’t do anything for me. And there were other people that were, and some people like that, they said, I still want to go to the US. Bill Gasiamis (19:37) I see. Vincent Thijs (19:59) And please, can you tell me if I received a placebo? And I understand it was terribly frustrating for these participants. But we were very strict. No, we don’t want to break the blind. This is against the rules that you have to adhere to in a clinical trial. And so we didn’t do that. Of course, once the trial was finished, we were able to report the results back to the the participants. And then there were some people that were very surprised that they had received the active drug. I remember one person vividly who said, you have to tell me now because I’m going. And then I said, hold off, hold off. And then we told them you had twice the active drug. And so they decided not to go anymore. So you see how From a clinical trial perspective, it’s very important to remain very objective and not being able to see what people have received. From a humane level, of course, I understand it was very important to these people. Bill Gasiamis (21:02) Yeah, that’d be difficult. ⁓ And then I imagine that had the placebo not worked and then the tenisept did work, then there would have been people who would have said, well, I’ve received the placebo. It didn’t work for me. Other people received the tenisept. It did work for them. Why can’t I get the tenisept injection now? Vincent Thijs (21:26) Yeah, and we also had two people, people that had twice the placebo who noticed an improvement and have told me the improvement is still there. Bill Gasiamis (21:35) Wow. Vincent Thijs (21:36) So it. Bill Gasiamis (21:38) That’s amazing. Now was the. Vincent Thijs (21:40) And often that, and I must tell you, often those were relatively little things that seemed to improve both with the placebo and in the active group. And you see that there are changes in quality of life that people have reported, but it happens as well with the placebo. Bill Gasiamis (21:58) Wow. Was the intention of the study that was funded at the very beginning in 2016 by Minister Hunt, was it to determine whether or not this was going to be an effective treatment for people in stroke and therefore to roll it out somehow in the Australian medical system for stroke survivors? What was the thinking for Minister Hunt? Do you know? Vincent Thijs (22:24) Of course, I was not involved in that lobbying to the minister or anything, but it was to bring it on a pathway towards regulatory approval. We know that Etanercept is a relatively cheap drug that you can get ⁓ and is approved already for some indications, especially in people with rheumatoid arthritis, the condition of the joints, but it’s not approved for stroke. And to be officially approved and then potentially re- reimbursed on the PBS. You need to have some trials that have been done such as PESTO. We do different trial phases. One would be a phase two trial and a phase three trial. So phase one is typically in people just to assess the safety and some dosages usually in healthy people. And then a phase two is safety amongst stroke survivors. and preliminary efficacy. And that’s where PESTO was what we call a phase two B trial. And then a phase three trial would then be a trial in many more participants based usually on the results of a phase two B trial. And then usually when you have a phase three trial and it’s convincing and the authorities may approve such a trial. Bill Gasiamis (23:46) So in this case, the phase two B trial, this PESTO trial didn’t find that it’s efficacious. And as a result, there’s not going to be a further trial. Would that be accurate? Vincent Thijs (23:56) Well, based on the findings we have in this particular type of ⁓ way of administering in this particular group of people, I don’t think there’s enough evidence to argue for a phase three trial. It may be that you could say, well, we want to focus on pain because that was more promising. Well, you’ll need to do another trial in that condition. Implications and Future Directions for Research After stroke or maybe within a year after stroke. I mean, there are other possibilities, but at the moment, current clinical practice type trials, I don’t think there’s enough evidence to move forward with that. Bill Gasiamis (24:43) What would the numbers have had to look like for the trial to conclude that there was evidence of efficacy? Vincent Thijs (24:51) Well, I think based on what we have now, you would need to design a much, much bigger trial because there was only a 5 % difference between the placebo and the active group. And actually it was in favor of the placebo. So the placebo did a little bit better, not statistically significant. So it could just be by chance, but you would need probably thousands of people. Bill Gasiamis (25:15) I see. And I imagine there’s not a lot of excitement about funding something like that by the people who fund these trials. Vincent Thijs (25:25) Yes, typically the funders will look at how good is the evidence to pursue this. And if you were a pharmaceutical company on a pathway to development for a drug, you probably would say, well, it looks safe, but it didn’t do what it intended to do. So let’s stop the development of this drug for this indication. Bill Gasiamis (25:45) I say so. I think one of the challenges with the path of administering a TANACEP to stroke survivors is that there seems to be a missing step. And the step to me is determining whether or not somebody is a candidate for a TANACEP. perhaps if we knew more about the stroke survivor, what was actually happening in their particular brain, and we were able to determine some similarities between the people who have had a positive result and we developed a method, then that would make it a lot easier. to say, well, I’m a stroke survivor. I’d like to have a TANACYPT and then go through a process of determining whether or not I was a candidate rather than just guessing whether I’m a candidate or not and then having to pay money to find out whether in fact I was a candidate. Vincent Thijs (26:33) The trial provides a little bit of answers to that. ⁓ You want to identify a marker or a subgroup of people in whom the drug will work particularly well. And so you could look at, and we looked at different things like females versus males, if you’re younger versus older, if you have very severe disability or less severe disability, if you have diabetes, are you early after your stroke or later? That one to five versus six to 15 category. And we could not identify a group in whom the the drug worked particularly well. Now there’s a caveat when you do a clinical trial, it’s really hard to look at subgroups, especially if your trial is relatively small and the PESTO trial is relatively small. So you have to take this with a grain of salt, but it was nothing really promising. that we could identify. So probably you need other markers. If you believe in Etanercept as a drug, you would possibly need to look at what are the levels of TNF alpha, the drug, the molecule that actually is targeted. Unfortunately, there’s nothing like readily available to do that. Could it be that people with a… a stroke in a particular location that would work particularly more than in others, but we don’t have any real way at the moment to do that. Bill Gasiamis (28:08) Okay, so we’re assuming that the people who experience an improvement after they’ve had an attempt to shut that the markers of TNF alpha were lower or higher or Vincent Thijs (28:21) Well, the theory is that they have a lot higher TNF-alpha. Now, as you know, the premise is Etanercept works by reducing this molecule and we have good evidence that it reduces this molecule in the blood, but we don’t have good evidence that it reduces the levels in the brain. That’s where you want it to be. And one of the difficulties and many scientists that work on the Etanercept and ⁓ have said, look, it doesn’t cross the blood-brain barrier. It doesn’t. go against the natural defense that we have to protect the brain against substances that could potentially be harmful for the brain or that have a large size. And the Tandacep we know has a large size would not cross the blood-brain barrier. So it doesn’t reach the brain. And many people look at it with relative skepticism that it actually enters the brain. Bill Gasiamis (29:18) ⁓ And then with regards to rheumatoid arthritis, doesn’t need to cross the blood-brain barrier. It just somehow gets to this, position or the place where inflammation is occurring. TNF-alpha is active and it can easily mitigate the impact that TNF-alpha is causing. In the brain, the brain is protected by the blood-brain barrier and it cannot cross the blood-brain barrier under normal conditions and therefore it can’t get to where the TNF-alpha is. if there’s any TNF alpha, if inflammation is the issue and it cannot resolve it one way or another. So for some people perhaps it can’t resolve it. Now, I don’t understand about Etanercept a lot. I don’t understand exactly how the molecule works, et cetera. But if it was injected into a blood vessel, is that not something that can occur? And if it was, if it can occur, would that then cross the blood brain barrier? Vincent Thijs (30:15) That wouldn’t cause a blood brain barrier, no. You would have to do what we call a lumbar puncture or put a little ⁓ injection into the ventricles and then hope that it would enter the area that is stark where the TNF alpha is elevated. Those experiments have not been done. Bill Gasiamis (30:17) Either. Okay, so a lumbar puncture is probably riskier than… Vincent Thijs (30:44) Well, it’s uncomfortable. It’s uncomfortable and we do it to administer drugs if needed. Some people with brain cancer receive it. There are other trials ongoing in certain areas of stroke where it’s done. Bill Gasiamis (30:58) Then the difficulty is, and my job here is to report back to the community how they should proceed with Etanercept going forward. Now, I don’t expect you to answer that. However, your study probably gives enough information for people to be able to make an even more informed decision than they did before. Previously, what I think was happening is people, and it still happens every day. And I’ve interviewed a lot of stroke survivors who’ve had positive results with Etanercept. The challenge is getting interviews with stroke survivors who have had negative results with Etanercept. That is something I haven’t been able to do. So if somebody happens to be watching and listening to this and they have had the Etanercept shots and they didn’t get positive results, please reach out so that we can share a balanced story of what’s happening out there in the community. Would there be a reason for the community to perhaps begin again to lobby a government or a minister of a government to look at perisponinal tenosept and study it in a different way, like administration via a lumbar puncture. Conclusions and Final Thoughts Vincent Thijs (32:08) I think we need more, probably go back to the drawing table to see whether, because we’re just taking a step back. The idea is that there is inflammation after stroke and we know that there is inflammation after stroke. We don’t, we just don’t know how long it is. We don’t have a good marker. Is it present only for weeks or months after stroke or can it persist for years? The theory is that it persists for years, but if you look at the actual experiments that have been done, it’s really hard to study in humans because we don’t have good tests. But if you look in animals, it’s also hard to do long-term studies in animals, but nobody has really proven that conclusively that there is still after the stroke causes a scar, that process is still really active. Is TNF-alpha years after a stroke still present? Yes, it’s present because we use TNF as a transmitter in the brain or a chemical in the brain, but is it still worth reducing its activity? That’s probably, I think, a bigger question that science needs to answer is to understand that all inflammation piece and the time after stroke that it persists in my Bill Gasiamis (33:35) Yeah, because it could still be the fact that the person has had brain damage. The particular part of their brain that’s damaged has, for example, taken offline one of their limbs and there is no way to recover that once it’s gone. there is no, there may also be no inflammation ⁓ there. So somebody in that situation receiving Etanercept wouldn’t get a result even if it was able to cross the blood-brain barrier because the damage is done and that’s the challenge with the brain is once it’s damaged restoring the damaged part is not possible. Vincent Thijs (34:15) Yeah, look, after this experience with the PESTA trial, I think we need to work on other avenues and I’m not as hopeful with this based on the data that I have seen. Bill Gasiamis (34:28) Yeah Well, my final question then is, are you planning on exploring inflammation and recovery after stroke with any work that you’re doing in the future? Is there any more of this type of work being done? Vincent Thijs (34:46) we’ve just launched a new study, which is not a randomized trial, but it’s trying to get at this common symptom that people have after stroke, which is fatigue and cognitive changes. And one of my post-docs, Dr. Emily Ramech, she’s a physio by background. We just launched what we call the deep phenotyping study after stroke. And we are looking at young people that have had a stroke up to age 55 and we’re taking them into the scanner. We will do a PET scan that’s looking at inflammation. We’re taking their bloods and looking at markers of inflammation and see how that relates to fatigue after stroke. This is between the first month and the sixth month after stroke. That will give us a little bit of timeline of inflammation after stroke. It will give us some information about fatigue, which is very common, but I have no plans at the moment to look at ethanocephaly. Bill Gasiamis (35:53) Fair enough. I appreciate your time. Thank you so much. All right, well, that brings us back to the end of the episode with Professor Vincent Dease on the PESLO trial results. My hope is that this conversation gives you more clarity, especially if you’re felt caught between personal stories, strong opinions, and a lot of uncertainty. The goal here isn’t to tell you what to do. It’s to help you ask better questions and make decisions with your eyes open alongside a qualified healthcare professional who knows your situation. If this episode helped you, please do a couple of things. Subscribe on YouTube or follow the podcast on Spotify or Apple. Leave a review if you can. It really helps more stroke survivors find the show. And if you’ve had an experience you’re willing to share respectfully, positive, negative or mixed, add a comment. Those real-world perspectives help community feel less alone. And if you’d like to support the podcast and keep it going, my book is at recoveryafterstroke.com/book. And you can join the Patreon at patreon.com/recoveryafterstroke. Thanks for being here with me. And remember you’re not alone in this recovery journey. 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 Gassiamus. 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. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitator. program based on our content. 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 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. 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Introduction After a stroke, recovery doesn't end when rehab does. For many survivors, that's when confusion begins. Fatigue, brain fog, limited appointment time, and conflicting advice make it incredibly hard to know what actually helps. And while research is advancing rapidly, most survivors are left trying to piece together answers from podcasts, Facebook groups, and late-night Google searches. That's why this conversation with Jessica Dove London, founder of turnto.ai, matters. The Hidden Problem in Stroke Recovery: Information Overload Stroke survivors aren't lacking motivation. They're drowning in disconnected information — and often too exhausted to process it. Bill shares how, after stroke and brain surgery, even short bursts of research felt impossible. Jessica explains how parents and patients are expected to become full-time researchers — on top of surviving life-changing diagnoses. Why “Just Ask Your Doctor” Isn't Enough Doctors care deeply. But no clinician can keep up with thousands of new stroke-related publications every week. This gap leaves survivors feeling dismissed — not because professionals don't care, but because systems aren't built for rapid knowledge sharing. “You shouldn't have to rely on luck or Facebook groups to find something that could change your recovery.” How Tunrto.ai Changes the Stroke Recovery Equation turnto.ai doesn't replace doctors. It reduces the cognitive load on survivors. Jessica explains how the platform: Reads thousands of new stroke resources weekly Filters by your stage of recovery and priorities Surfaces research, patient experience, and expert insight together Updates automatically as your needs change For survivors managing fatigue, this alone is transformative. Real Examples: From Spasticity to Stem Cells Bill demonstrates how Tunrto.ai can instantly surface: Evidence and cautions around emerging treatments Patient experiences that add real-world context Research trends and unanswered questions Instead of hours of searching, survivors gain clarity — and better conversations with their care teams. Why This Restores Hope After Stroke Hope doesn't come from miracle cures. It comes from visibility — knowing what exists, what's emerging, and what's worth asking about. Tunrto.ai doesn't promise answers. It promises orientation — and that changes everything. Conclusion & CTA If you're a stroke survivor who feels lost, overwhelmed, or unsure where to look next, tools like turnto.ai represent a new way forward. Learn more at turnto.ai Read Bill's book at recoveryafterstroke.com/book Support the podcast at patreon.com/recoveryafterstroke You're not alone — and better answers are closer than you think. Footer disclaimer: This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. When Stroke Recovery Meets AI — Finding Clarity Faster with Jessica Dove London After stroke, finding answers shouldn't depend on luck. Discover how AI is changing stroke recovery with Jessica Dove London. Turnto.ai Jessica’s LinkedIn Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction to the Journey 09:17 The Birth of Turn2.ai 19:07 Navigating Information Overload 27:10 The Onboarding Process Explained 35:28 Real-Life Applications and Success Stories 43:57 Empowering Patients Through Collaboration Transcript: Introduction to AI for stroke recovery Bill Gasiamis (00:00) Hey everyone, if you’ve ever struggled to find information about tools, treatments, or resources that could actually help you on your stroke recovery journey, this interview is a game-changer. One of the reasons I’m so passionate about doing this podcast is because of my purpose behind it. And that purpose is simple, to connect people with information, to connect people with tools, and to connect people with other people. who truly understand what this journey is like. After a stroke, finding reliable up-to-date information is exhausting. You’re dealing with fatigue, brain fog, limited time, and often very little guidance beyond rehab. In today’s episode, you’re going to hear from Jessica Dove London, my new hero, the founder of Turnto.ai, a tool designed to help people like us find relevant stroke recovery information much faster with less effort and far less energy delivered straight into your email inbox. This is not a sponsored episode, but it is an episode about a solution I genuinely believe can change how stroke survivors find answers. Let’s get into it. Bill Gasiamis (01:13) Jessica Dove London, welcome to the podcast. Jessica Dove London (01:16) Great to be here Bill Bill Gasiamis (01:17) Sometimes when people send me emails, they go into the inbox and then they’re kind of like, I’ll look at that when I get back to it, when I get back to it, I get back to it. And I saw the email that you sent to me when you reached out to tell me about this amazing new product. And I thought, well, another amazing new product. There’s plenty of them. And usually the products that people kind of email me about are not relevant to Stroke. And people are just trying to get onto podcasts and all that kind of stuff. And I get it. I’ve got no issue with that. If they’re relevant, I love sending new information to people. And one of the biggest challenges is determining what’s going to be the most helpful thing. How can I get things out that are not just another thing to talk about for the sake of talking about it? And then I didn’t respond to your email because it kind of goes down to the bottom of the list when all the other new ones come in and I’ll get to that. get to that. And then I saw a link in my I comment on my LinkedIn and I thought, okay, this is familiar. I’ve seen this before. Let me check it out. And then I checked it out and thought, what an idiot. Why haven’t I contacted this person back quicker? This product is amazing. But before we talk about turnto.ai, give me a little bit of a background. I just want to get a sense of how it is that somebody comes up with the idea. I know what I’m going to do. I’m going to create a product that brings information to people. more rapidly than ever before so that they can decrease the amount of time it takes to learn new and amazing things that are coming up about their condition. Jessica Dove London (02:50) Yeah, well, Bill, I did really like your podcast. That’s why I linked in you as well. I actually really liked your podcast because, you know, from where I come from, my son has a rare type of cerebral palsy. We actually don’t have a podcast like this where it’s a patient-led, you know, quest for finding the most useful, cutting-edge, relevant type information. So I really liked your channel. But I guess where do, where do, you know, where do a lot of these things come from? from my lived experience. So when my son was 18 months old, he was diagnosed with a rare type of cerebral palsy, which is a little bit similar to Parkinson’s in his rare type. And when I went along, when he got diagnosed, I went along to his appointment, we knew he had something and I took a big research paper along systematic review and the doctor said, nothing you can do to help him. There’s no medication, surgery. She even told me, don’t bother reading those papers. And I just, went on this journey that maybe a lot of people listening relate to when you are given something or you’re recovering, we have this huge life change of wondering what can I do to improve my son’s quality of life? And this real question, like, can I do anything? He’s amazing as he is, but we want to unlock the whole world for him. So I just went on this journey for years, finding treatments for him. And we just kept finding treatments and some were incredibly life impacting. And almost all of them were in the medical literature. I just had to decipher them. I traveled the world, how did every world leader ended up studying neuroscience? We, we had a big YouTube channel where we shared our stories and I went to a huge conference with all these academics and this one world leader got up on the stage and she shared these incredible things coming for cerebral palsy, which actually is some relevance for stroke because there’s a lot of things that are free. They’re, sort of based on neuroplasticity. They’re very accessible. And I actually put my hand up and said, I shouldn’t have to fly around the world. to learn about cutting edge things that could help my son or help people right now. you know, I guess I just live this experience that think many people do where all the cutting edge information can be all over the place. It can live in these research papers. It can live in the patient community. It can live in those incredible healthcare providers, but you have to sign or in clinical trials, you know, you don’t know, you have to piece it all together and then work out what’s relevant for me. because you know, you could be sitting in a Facebook group, you could be listening to podcasts like this, but there’s so much time that is wasted and opportunity that is wasted while you’re trying to work out all these things. And for most people, you don’t have the world leading best healthcare providing team. Who knows everything doing that work for you. You have to do it on your own. So yeah, just live that problem of trying to find the cutting edge thing to help my son and you know, For two years, it took me two years, we did find a whole lot of things. Bill Gasiamis (05:40) Yeah, two years. my gosh. And I mean, you’d give more than two years to your son, but it’s not about that. It’s about, doing it more quickly than two years. And from stroke perspective, do you have a stroke? Your brain doesn’t work properly. And then trying to sit there and get through, data, texts, videos, all that kind of stuff. I only was able to find like very small amounts of time in between. ⁓ feeling terrible most of the time. And then, ⁓ my gosh, I’m feeling good right now. And then it’s a priority. Like what do I do now that I’m feeling good for five minutes or 10 minutes or an hour? And for me, I, I was very keen to kind of, understand what I can do to support myself. And I knew for certain there was stuff that doctors weren’t delivering when able to deliver, didn’t know about, weren’t telling me that if I did the research that, and I found that I could implement something that was easy for me to implement. for me, just perfect example would be nutrition. But in my conversations with doctors, when I asked them about, this something I can stop eating or start eating to help my brain? There was no information out. There’s probably nothing that wouldn’t matter. Just go about the treatment that we’re offering. And then as a mom or a parent, let’s say as a parent who has a child who has needs beyond the quote unquote normal. It’s like, I’ve got to do all these extra things as a parent for my child. And I’ve got to have my life. I’ve got to do work and do all the things that parents do other than just parenting. And then somehow in there, I’ve got to find a flight to a conference to the other side of the world to hear a researcher maybe, and it’s only like a maybe share something that’ll be life-changing and supportive. And that’s kind of… where I was at, was in the same place. And I thought, what I’ll do is I’ll create a conversation so that people can come to me. We can chat about it amongst other things, share stories. But then hopefully somebody on my YouTube channel says, do you know about this? And then that happened. And then that was a problem as well, because it’s like, I don’t know about this. I don’t even know where to begin to have a conversation about that with you. And if I needed to… do the research on something that I was asked about will take ages. Now, one of the questions I had recently was, you know about methylene blue? And it’s this ridiculously kind of current topic about improving mitochondrial function for people. And as a result of that, people are finding out how you can take that and they’re taking it, which I wouldn’t recommend. And, and now I don’t… The Birth of Turnto.ai And now I’ve got to go and do, I don’t know how many searches to find all the data on Methylene Blue and I don’t know where they’re hiding. Read them, spend my entire time to read them, know, spend all my time to read them and then somehow kind of give people feedback on what I’ve read because that’s the role that I’ve decided to play. And now that’s what they’re expecting of me, but it takes ages. It’s forever. So then a little while later, what happened was you, you said, you know, have a look at turnto.ai. check it out, tell me what you think. And then I did. And I was able to see the power of being able to have the research just sent to me in my inbox because I asked the AI to do it and it does it on a regular basis. And in a moment we’ll share about it. But then tell me a little bit about that transition for you from I’m traveling all over the world to nah, stuff that. I’m gonna do that from. my office in Brisbane, in Australia. I’m not going to travel the whole world to find out this information. It’s not efficient enough. How do you move from mum with a problem to mum with a massive solution? Jessica Dove London (09:31) I mean, I guess, you know, those first five years I was just full-time mom and just doing, you know, we did all the things we did into all the therapy centers. And I, you know, I guess it’s really interesting that question you had. you have these really tricky questions or people ask you questions or you’re on a Facebook group and you see people talking about something you’ve never heard about. Yeah. I was just trying to pull those pieces together because I had the capacity to do that reading. Often it was late at night. think one of the biggest challenges is often at the beginning of your journey, you don’t have the context. You don’t know the map that you’re even looking at. All you know is the impact it’s having immediately and the potential future impact and all those really hard things that you’re facing. so probably for those first five years, I was just pulling everything together messily and someone’s trying things, low risk things, all these different things, trying to get the best people to give us that advice. However, you know, after those five years, I went to that REITs big conference and actually initially got an AI grant to do a research project, an AI research project. And I had a really good friend get lung cancer, stage four lung cancer and a good friend get MS. And they just had the same problem that I was having. And so I just knew there was something here. And so initially what we did is we actually just brought all the treatments that exist for cerebral palsy in one place. And there were over 220 treatments and most patient knew about five to 10. And these are, science backed different protocol treatments people are doing and having some impact on. They having some evidence of things that are working. And so the problem is just really wild because you again, you’re told, I’ll just try these few things, but there’s actually legitimate scientific leading people with all these other ideas and some of it’s really working. So I just, I initially I did that. And then when my kids started school, ⁓ I decided to start a tech platform because I saw this as a really huge problem, but I knew I needed a world-class engineering team because I knew AI had to be part of this. And this was before all the LLM, all the open AI. don’t know if people’s familiar with AI, familiarity with AI is. Before all of this amazing sort of last few years, I was using sort of different, more sort of machine learning to try and just bring the data in and categorize it. but really just trying to make it accessible for people. Bill Gasiamis (11:51) Before we continue, want to pause for just a moment. If you’ve been listening to this conversation and thinking, I don’t have the energy to search research papers, Facebook groups, podcasts, and forums just to find one useful thing, you’re not alone. exact problem is why this episode matters. What Jessica has built with turnto.ai is a way to reduce the mental and physical effort it takes to stay informed. after a stroke. Instead of searching endlessly, relevant information is found for you based on where you are in your recovery and sent straight to your inbox. There’s a listener discount available which you’ll find in the show notes and I’ve also created a page with more details at recoveryafterstroke.com/turnto that’s recoveryafterstroke.com/turnto But stay around, listen to the rest of this episode before you go and check out recoveryafterstroke.com/turnto, to get the discount code. All right, let’s get back to the conversation. Jessica Dove London (12:55) yeah, I guess it was definitely a journey I didn’t go from, know, the first few years it was just heads down, fully in care mode, trying to deliver all the care, trying to access all the experts. And then slowly I just went on this journey to eventually being full time running this team of amazing people from the tech space. I knew this should be a tech solution because You know, I think one of the unfortunate things is, is amazing groups out there, amazing orgs out there, but they often are technology specialists. So I don’t build things that can continue to be relevant. They often make really high quality resources and then the resources are actually not relevant even for you doing a search. You know, you do a search and then what happens in a month when there’s something new that’s come out about that. So yeah, we’re on that journey and probably the cornerstone of what we’ve built is this belief we have that all the voices matter. And so research matters, patient experience matter, leading professionals, experts matter. And actually they sometimes can hold different pieces of the puzzle. probably unlike other tools that you’ll see out there and when we show what we’ve built and how we build it, that’s the key thing. The other thing we believe is that new information matters and it’s too much work for one person, let alone a doctor, a specialist can’t even stay up to date on the disease because know, stroke is actually got an unbelievable amount of things that are created every week. can be over 2000 new things every week in stroke that are being published from expert interviews to new research to clinical trials to patient discussions to incredible events. It’s just wild. Like there’s actually so much incredible stuff happening. But you can’t find it all and you can’t read it all. Bill Gasiamis (14:39) Yeah, absolutely. And that’s why when I had a little bit of a play with Tony, with Turn 2… It was cool because I’m not interested in everything that stroke has to offer me. The research has taught me, but I’m interested in certain things and I’m interested on things specifically that my followers and listeners on my podcast want to know about, you know, so I’d love to be able to bring that to them. So then I had a bit of a play and then we’re going to move to that. I’m going to share the screen in a minute and we’ll talk about that actual screen and the solution, but there is an onboarding process, which we’re not going to. show today but can we talk about it a little bit just to give people a sense of how people they’ll come across turn to and then they’ll go okay ⁓ i want to start and then i want to make sure i get information information for just the stuff that i’m interested in how does the onboarding work Jessica Dove London (15:21) Yeah. Yeah, I guess this is again, thing of like, you know, we’ve built a tool that you’re about to see where we want to keep you up to date, read every single new thing and just give you a handful of things. So how do we do that? And so the way we designed this is to find out what’s on top right now. If you’ve just had a stroke, you’re in a very different stage to one year post, two year post, five year post. the reality is of a patient journey is Bill Gasiamis (15:40) Hmm. Jessica Dove London (16:02) you are always changing, know, you know, we have things, new things come up and then you suddenly feel like you’re at the beginning again or new symptoms come up and you get very confused. Like, is this related? I’m like, I have to talk to my doctor. What’s happening here? I’ve just started a new medication. There’s always things happening. So we ask just five questions and the questions are just all about right now. and sort of some key different attributes around your recovery journey or your journey because Sometimes some information is less relevant for certain groups than others. I’m in a cerebral palsy space, your subtype really matters because it’s actually completely different neurology. And so you might find this incredible breakthrough and it just not be relevant for the subtype, which is actually the case for my son. My son has a very rare subtype, which makes like, you know, anything published on his subtype is like gold because you’re like, wow, a new sort of thing has come out. Yeah. So what we’ve done is, made the onboarding about what are you facing this week with your stroke recovery? You know, what is the symptom you’re worried about? And the thing about the tool is, you know, that week it’ll, it’ll go and read the thousands of new things and it will then match you according to what’s on top for you. And it’ll also go and do specific searches on your location. So if you’re living in Sydney, you’re living in anyway, Los Angeles, London, it’ll search for that week for stroke. what is happening in that city. And the reason that’s so helpful sometimes is there are groups, there’s new clinical trials, there’s so many things that are all these incredible people are putting on webinars, like online support, online educational things. So we match you to all of those things every single week. But yeah, really it’s what are you doing with dealing with right now? And then if you get to Sunday, cause that’s when we send our update out and you’ve got something new that’s come up, you just can talk or type and say, hey, I’m not interested, I’m now interested in keto and I’m interested in this and it will just make you, it’ll create new priorities. Cause that’s the real journey of living with a competition. Bill Gasiamis (18:05) I love that it does change at the beginning. It was all about fatigue. How do I improve my fatigue? And then later on it was like, how do I improve my sleep? And then later on it was after, you know, after brain surgery, it’s a completely different, uh, um, inquiries that I was making on YouTube, Google, wherever I was like, you know, how do I overcome a brain surgery, all that kind of stuff. Um, and then also at the beginning, some of those problems I solved like, then Jessica Dove London (18:25) Yeah. Yeah. Exactly. Bill Gasiamis (18:35) I thought, okay, what’s the next one I need to solve? Jessica Dove London (18:38) Yeah, that’s right. The funny thing about health information is though, cause one of the things we’ve built, if let’s say you’ve tried something though, and there has been new research that’s come out about post impact, you may get that in your update because, know, let’s say you did a surgery or you did sort of some sort of intervention there. Sometimes studies coming out about five years post that intervention. And actually that’s really useful for you because what if it, this new potential thing you should be testing for? I think the key to what we, Navigating Information Overload Have learned from building these tools is you don’t actually know what you don’t know. And like, I think most people here have had that experience of sitting in a Facebook group, listening to your podcast. You learn something new and you go, ⁓ I wish I knew this. ⁓ it feels like luck. And I think that is just a really challenging thing because your health is so much more important than luck, but it can feel like that. You know, I can literally remember when I’ve been in a Facebook group and someone first mentioned this surgery that we ended up doing. took us a year to make the decision, but it was like, ⁓ my goodness, what is this they’re talking about? And then I went to my, our surgeon and the surgeon was very, very dismissive even though there was huge body of literature behind this particular intervention. So then I had to find another specialist and so it begins. Bill Gasiamis (19:53) Yeah. That’s a great thing too, as well. Like if you could be facing roadblocks that are based on other people and that, and then if you don’t have like some kind of ammunition to take to them to say, but you know, how about this? That’s one of the challenges. Cause then, you know, they kind of say, well, there’s no data. I haven’t seen it. If I haven’t seen, I’m a doctor. Like, you know, what do you know? How are you going to be the perfect person that makes the decision? gatekeepers of information bother the hell out of me. Like I hate people who have information and think that because they have it, that they sort of hold the key to how that information is disseminated. But then also people who discourage people from doing searches on what may help them, you know, this is my life, it’s my condition. I wanna be able to find things to help me to make my life better. So I don’t have to be in the hospital system so I can go back to life. so I can improve things. So luck is not part of the equation. If I didn’t jump into that Facebook group today and didn’t see that post, I would have missed it for years maybe. Jessica Dove London (20:56) And this stuff just is always happening. It is pretty wild. And again, the reality is that there is just information is everywhere. And I think even for people who favor research, research takes years to come out. And who decides what should be researched? When we did our first research project, when I started this work, one of the things we did is we collected patient stories of treatment reviews. popular treatment at the time, had no research behind it in the cerebral palsy space, but very low risk. It was like an intensive physio type protocol. And I actually shared this with a whole bunch of academics and a world leader came up to me and said, she’s now going to study this treatment. Because again, you know, are not academics sitting in Facebook groups. or they’re not always, know, they’re not, you know, it takes years for these things to even begin to be getting researched. However, at the same time, are, like research has been, can be very, very helpful and it can also, you know, there are definitely a variety of things out there. Some things are snake oil, some things are, some things can look like snake oil and actually be the next best thing because there’s actually a sign, you know, reason why it’s working or we don’t know why it’s working. It is very hard to decide for all of this. Yeah. Bill Gasiamis (22:17) used to be hard. Now it’s a lot easier. Thank you very much. So I’m going to share my screen now so we can have a bit of a look at what we’re talking about. Jessica Dove London (22:19) Yeah. Bill Gasiamis (22:26) so this is the screen. Now, I’ve purposely resisted from clicking on the first two weekly updates at the top because I wanna kind of tell people what happened, why they’re there. But then I wanna go all the way down to the very first catch up that ⁓ I had with the software after I was onboarded, after I answered all the questions and did all that stuff. It came to me, it said, these are some things that we found for you. And, ⁓ it said it found 18 things. It gave me this, ⁓ bar chart thingy, me jiggy here, which is not a bar chart. It’s actually an audio file telling me what it found. ⁓ and it gave me top insights, six things, and it told me one thing that was near me now, just for context. said, I’m in Australia, in Melbourne, but I said I was in New York, New York. Okay. Just so that I can kind of get a sense of what happens when people from ⁓ other places in the world do a search. I kind of have an idea that if I had done the same thing, what type of results I would have got here. But the reason I did that is because I believe it or not, stroke survivors have reached out to me from New York and said, do I know any stroke survivors in New York? I’m in Australia, in Melbourne. Like technically that answer should be no. but I know heaps of people in other areas. But what I don’t know is what’s happening in those other areas. And what Tony found was ⁓ groups, meetups or something along those lines that were happening in New York for people. So I found that really interesting. So I could immediately do that search and get that I click near you, all right, I’m not in New York guys, but if I click near you, look what it found. Hybrid event stroke support groups at Mount Sinai, Sinai, I know I butchered that, but it’s. probably an event that is happening ⁓ in that area. Union Square, I think I know what that is. I think that is in Manhattan. And then it gives its thoughts. It says, this group could help you connect with survivors for emotional regulation and post-traumatic growth. Like, what? That was like a few minutes of searching immediately now. If I had even moved. to New York, it was a brand new place where I’m living and I want to connect with people, I’ve automatically found that. mean, that is fantastic. Jessica Dove London (24:58) So Bill, when you get your update, you go to the, I found you, you can actually flick through all of the updates. And for people as well, can, if you go to click on what I found you, or if you just go back into it and then you can actually flick through them all. So you can flick through the research, the expert interviews, the patient discussions, the online events. And also for people who like email, you can get it all in an email. That’s sort of an easier experience for you, but you can just really quickly flick. Bill Gasiamis (25:06) what I found. Yeah. Jessica Dove London (25:28) through all the relevant things that have found you. And it’s just matching to what you’ve said. So you would have said all those different sort of key things that are important to you. And then the whole thing we believe is we try not to use AI to give you necessarily a generic answer. We’re trying to use AI to find you the most interesting resources that already exist. Bill Gasiamis (25:30) Yeah. Yeah. Yeah, I love it. this one, this week’s daily update. So I’ve had a few of those updates and I’ve clicked a lot of them. And they, as I was going through my mind a few weeks after I logged in for the first time, I would then put in a new search. And then the most recent email that I got or update that I got was this one here. And It has found 17 new things for me and the top insights have been updated because one of the additional searches that I put in later after I did the onboarding was about hand spasticity. And then also I did, and look at this, I did a podcast with, a stroke survivor called Jonathan and it has already found it and brought that to my attention as if I didn’t know about it. And Jonathan Aravello shares his story. That’s an interview that I did with a stroke survivor a little while ago and it already knows that it’s there. And then if you scroll down, I found if you scroll down, you just go through other things that people are talking about. Vivastim is a new product that stroke survivors are talking about because it’s an implantable and it attaches to autonomic, to the vagus nerve and somehow it supports people to improve function and it helps with neuroplasticity and all that kind of stuff. I’m just stunned by all the information that came to me and… The Onboarding Process Explained And I had a question this week in my YouTube channel. Let me tell you what it is. And let’s see if we can just do a search and find some information on that product. STC30 stem cell treatment. I’ve got no idea where to start. How would I answer that question for the person? They asked me a lovely question. What can you say about the effectiveness of STC30 stem cell treatment? So I’m getting asked like I’m an expert in these areas. I don’t mind, but that’s the kind of information that people are looking for. They’re going, how do I find information about that thing when nobody else out there will talk to me about it? They’re kind of like doing a Hail Mary shot. They’re going, I’m going to ask this guy on the podcast, maybe he knows about stem cells. Who would know about that? But check this out. If I do ask a question, if I say,tell me. about ST. C 30. stem cells. I’m going to generate. And I love this part about it too, the searching and the thinking that it does. ⁓ What specific outcomes or improvements are you hoping to achieve? And I’ll just say. ⁓ Less brain fatigue. That’s brain fatigue. Jessica Dove London (28:52) It’s okay. It’s actually you can make spelling mistakes. Bill Gasiamis (28:56) It knows it’s smarter than me. Jessica Dove London (28:58) mean, AI is very good at that. And probably for people watching this, you what would be the difference of this with ChatGPT? Because ChatGPT is amazing and it’s going to get better and better. But the difference of people to understand is we actually have an intelligent data set on stroke. So what we’ve done is we’ve taken the past 10 years of all the stroke information. So from research papers, we’ve actually gone through YouTube and found webinars with experts. We’ve gone through patient discussions, we’ve collected resources. And the reason we’ve done this is because Bill Gasiamis (29:00) Yeah. Jessica Dove London (29:27) Again, I really love Chatjibity. I highly recommend people use it. However, the difference is our belief is all voices matter. So when you ask questions, we’re actually going to give you answers from experts, from patients and from research. So that would be the difference of this tool. And the reason it can take probably up to a minute to find you an answer is Stroke actually has, I Stroke has 450,000 resources in the database that we built for Stroke. So Stroke’s a really, really big database. I mean, it’s trying to look for that answer and then it’s trying to match you to it. I think that’s just, it hasn’t actually restarted. It’s just. Bill Gasiamis (30:05) It’s doing its thinking. It did seventy nine thousand searches. Jessica Dove London (30:09) And it’s trying to just match it to your profile, give you that answer. And it can get, there we go. Bill Gasiamis (30:15) Wow. And then here we go, ST stem cells is marketed as a supplement that claims to support cellular repair and regeneration, but its efficacy and safety are not well established in clinical research. So that’s like a little bit of ⁓ initial information. And then here you go, the patient view, which is so important in this, isn’t it? It’s important to find people who may have had a procedure and have something to share about it. That’s so, so helpful. And then what the research says, how many research papers has it got here? Wow. Look at that one, two, three, four, five, six, seven already research papers. And they’ll all have links to other research papers that, you know, made those ⁓ studies that sort of give those studies the initial information to get the ball rolling on them. And then, systemic review here which check Jessica Dove London (31:15) Sometimes there’s not actually even a full paper on that. I actually don’t know this topic, obviously, but if you go up to the summary, might even say, sometimes you might learn, there’s actually not specific papers on this. However, here are papers that are relevant. you click show style. It’s on the research here. you click post. So if you go down to what research says. Bill Gasiamis (31:31) Where’s the summary? do I do that? Jessica Dove London (31:37) You just scroll down, yep. And then you click show summary, see that pink little, but here we go. It shows you research trends, key findings, unknowns and mixed opinions, and all of it’s referenced. And that’s just because again, we’re trying to show patients as quickly as possible. Is there information? Is there mixed opinions? Because I think sometimes there’s been a tendency to have one answer to these things and there isn’t one answer. And sometimes there isn’t papers, you know? So we actually have trained our tool to Bill Gasiamis (32:01) Yeah. Yeah. Jessica Dove London (32:07) to sometimes not make up answers. And so, you know, we tested it on very rare protocols and it often says, hey, there is no protocol for your subtype. However, here are protocols that are being studied in other sort of use cases. Bill Gasiamis (32:19) Yeah. And then if I do this view source, this is cool too, right? It just goes directly to the article PubMed article. And you can read that. That’s brilliant. Okay. So then, ⁓ And look, here we go again. It’s found my podcast two times here. ⁓ that is brilliant. love it. And then I did this. went, I think I went back and then I asked the question here because I had like a thing that popped up in my brain today. Right. Somebody kind of said, Hey, have you heard about that? And, ⁓ somebody did that. And, ⁓ and then I just can go. immediately into that and go okay where is it i’m just trying to search on my Jessica Dove London (33:05) While you’re searching, guess the thing that we built with our weekly tool as well, so let’s say you really want to learn about STC 30. I think that’s it’s called. You can just put that in your weekly, your profile, and every week our tool will look for that specific topic because that’s the other thing. So if you click strengthen my profile, can you see that purple box down at the bottom? Yep. If you click on strength, you click on that, you can just say, you can type anything new in here and it’s going to then keep searching it. Bill Gasiamis (33:20) How do I do that? Why would I do that? ⁓ yeah? There you go, there’s all of my data that I put in at the beginning, New York, New York, early 50s age group, approximately 13 years post stroke, all the topics that I was interested in. And where would I put that? Would I put that here, add new? Jessica Dove London (33:34) Or if you Yeah, yeah. And if you start, then we’ll know that that’s at the top. Yeah. But you can, to be act, to actually be honest, you can actually, if you go back, I’ll show you an easier way. So at the end of every weekly update, there’s a huge box that just says, me anything new. but if you go back, I’ll show you something on the dashboard as well. Yep. So if you see, do you see want to do a deep dive, see how this says update me the top on the right. Bill Gasiamis (33:52) ⁓ dashboard. Jessica Dove London (34:13) next to ask, yeah, if you just talk at it and say, I’m now interested in this as a priority, it’ll then put it at the top for your next week’s update. Bill Gasiamis (34:13) ⁓ ⁓ okay. Next question I had a day ago, somebody wanted to know about red light therapy. So why don’t I do that? If I press that and then do that, right? Click this button here. Is that the one? Jessica Dove London (34:31) Or you can talk or type, whatever works for you. Bill Gasiamis (34:34) I’m gonna talk, let’s see if it does. Jessica Dove London (34:36) Let’s see if it works with the podcast, whether it’s taken them. Yeah, I think it’s not working just because you’re doing a podcast, because you’re using the speaker. Bill Gasiamis (34:39) Alright. ⁓ no. Okay, so I’ll type I’ll just say ⁓ red light therapy. Jessica Dove London (34:53) This won’t give you an answer. This is just going to go on to your weekly update now, Bill. Bill Gasiamis (34:58) Okay, okay, so if I if I do that Jessica Dove London (34:59) Yeah. And now, yep. So now it’s actually just added it to your health profile whenever you want to know. So for your next Sunday’s update, you’re now going to have red light therapy in there. But yeah, but the reason we put the voice box is it’s actually sometimes useful to talk a bit more like, Hey, I’m thinking about doing red light therapy. I’m really worried about this, this, this, just actually giving more context. Cause at the of the day, if there’s a thousand new things a week in stroke, you know, this is just a matter of how do you, how does Bill Gasiamis (35:11) my gosh, that’s ugly. Jessica Dove London (35:28) How does any sort of system get you what’s relevant? AI for Stroke Recovery – Real-Life Applications and Success Stories Bill Gasiamis (35:32) It’s a game changer. I’m telling you now. ⁓ I mean, you know that, I don’t know why I’m telling you, but you know that this is the one that was the weirdest thing, methylene blue. Do know it’s a food dye? Sorry. No, it’s not a food dye. It’s a clothes dye. I think it’s like a Indigo clothes dye and people take it. And it’s very risky because, ⁓ it’s very few people that, ⁓ actually experiencing the exact condition that’s related to, ⁓ Jessica Dove London (35:41) Okay. Really? Bill Gasiamis (36:01) neurological dysfunction or mitochondrial dysfunction that methylene blue can help for. And then if you take methylene blue and you take too much of it, ⁓ then it decreases mitochondrial function if you don’t have a need for it. And there’s no way of knowing whether you have mitochondrial dysfunction unless you have the right kind of doctor take you through that process and determine whether your mitochondria are functioning properly. I mean, not many people have access to that, but this is what happened when I, ⁓ put that in there, came up with a whole bunch of information again. This is just like the most obscure thing that everyone’s talking about now. And unfortunately, people are taking Methylene Blue ⁓ without knowing whether or not they’re a candidate. And when they request information from me, I want to be able to give them accurate information and don’t be like that. person who holds onto the data and then doesn’t release it. But I’m confident it could say if you’re somebody considering taking Methylene Blue, do not take Methylene Blue. is so, ⁓ it’s such a nuanced bit of like tool. It’s such a nuanced tool and you need to know like the most amazing people in that space and there’s probably only two of them in the world. So it’s like great that everyone’s talking about it. But I feel really confident now about having the information in front of me to share with stroke survivors. And I would not have felt like that if this tool did not exist. Jessica Dove London (37:34) Again, you could also put that into your weekly updates so that it keeps looking for that particular topic. Because I guess the challenge, the reality is, and the challenge for all of us is we hear these things or we don’t even know things exist. And I think, you know, there is the reality. Like I think you’re always looking for that one thing as well, right? Particularly with any sort of neuro condition, you’re like, is there something really big I’m missing? Bill Gasiamis (37:40) Yeah. you Jessica Dove London (38:00) You know, is there something that could really improve when you’re facing something that maybe, maybe there’s a symptom that won’t go away or, you know, in cerebral palsy, it’s a lifelong condition. So you’re all often like, looking for that. Is there something we’re missing kind of experience or there’s a new topic. like just to give you one example, which is a real example is I was worried about my son having osteoporosis. So I told the tool, I’m worried about my son having osteoporosis. I went to the doctor’s consultant and the consultant said, don’t worry, we don’t need to scan. He said we’re going try and them. But the doctor said, don’t worry. And then the week later, my son got very bad knee pain. We ended up doing an x-ray, which showed potential osteoporosis. I pushed and we got a dextrose. And doctor rings me and he says, yes, your son has osteoporosis. And I said, what can we do to treat this? And he actually told me. we wait for children to break their bones when they have cerebral palsy. Now, if you’re a wheelchair user and you break a bone, that could be a year of rehab for your life. Now I’d put this into the tool and in the period of two to three weeks, it had found me two papers studying children with osteoporosis with cerebral palsy and an expert interview. I said to the doctor, why are we not testing his calcium? Why are we not looking at his vitamin D? And the doctor said, you’re right. We need to test those levels. Now like, One, the reality is that consultant just can’t stay to date. Like I actually understand he’s busy. He’s actually serving lots of different conditions. And so like my passion and my hope is that we can do that work for people. because I have organized my son to get these blood tests now because we’re being proactive. Cause I don’t want him to break, break his bones. You know, I care more than anybody. He, know, it’s quality of life. And also when you have a label like cerebral palsy or stroke, Sometimes things can be disregarded, you know, it’s really, they think, ⁓ this is complex. We don’t really know. Well, maybe we just haven’t read the paper from three months ago or that really useful webinar from a conference that was last week. I’m talking about that exact symptom that is legitimate. So yeah, that’s my real passion, Bill is empowering people because, know, I think we all have these stories of being disregarded or. You know, and I do have a lot of hope for the future and I love medical professionals. I have some incredible people that I work with, but curiosity is just not usually the experience of most professionals when they’re, you know, they are just humans doing their best overwhelmed and usually not fully up to date. Bill Gasiamis (40:39) Yep. And they also don’t know what they don’t know. It’s no different to us, right? If they have, if it hasn’t fallen onto their lap and if they haven’t had a lucky day where they saw an article or, know, they’re in the same boat and as frustrating as it can be, and as much as you want to kind of dude, you know, you’re the guy leading my, my healthcare, you know, like I, I’m entrusting you with more than just this blasé attitude at that, like Jessica Dove London (40:43) Yes! That’s right. Bill Gasiamis (41:06) And that’s not helpful either. I totally get it as well. Jessica Dove London (41:08) That’s right. That’s right. You want to do it together. You know, I was on a call this week with not someone from stroke or cerebral palsy, but it was a consult specialist from another disease. I won’t mention what disease, but they said to me on the call, they picked up something from their desk and they said, I have a journal sitting here from early October and I’ve been trying to read it every day. But this person is a surgeon and is very, very busy. And they were telling me to build my tool, like this tool for doctors. She was like, We can’t stay up to date and we really want to, and we do. Like she will read that paper. But it’s such a burden on healthcare professionals. So my real hope in the future is that we go to our professionals and we look together at the evidence. know, there is that, cause you know, the truth is some world leaders obviously in a lot of professionals know a lot more and their lens is very useful of going, actually that is interesting. this is something we hadn’t thought about, or let’s look at this. Just that there’s time limitation. All right, sound good. Bill Gasiamis (42:08) I know they care. And when you’re a surgeon and somebody says, ⁓ emergency just rocked up through the door and it’s 1am, they drop everything and they go right. So then you want to give that person a break as well and say to my care what what do you want to sleep tomorrow morning? Okay, no worries, by all means sleep. And it makes complete sense why a journal could be on somebody’s desk and not get read. I mean, that happens with my taxes. They’re there forever. Jessica Dove London (42:19) Yeah. actually. Bill Gasiamis (42:35) and they need to get done. And I can come up with a million things that I prioritize over that thing because it’s actually a priority. I’m not saying that I don’t pay my taxes. I definitely do. But with a surgeon, you can understand where they would rather spend their time is helping people get through that particular situation that they’re finding themselves in. the, what is it like? It’s like, ⁓ by the way, there’s this journal there yet. I’m going to spend an hour reading that. what somebody needs surgery. No problem. Let’s go. I totally get it. I get it. And this tool kind of enables patients, I think, to have more information and take that to a meeting with a surgeon with a clinical, you know, in a clinical setting, wherever they are, and begin a conversation that perhaps wouldn’t have begun again. That information then does go kind of in that Jessica Dove London (43:09) That’s right. Bill Gasiamis (43:31) either at the front of the mind of that person or at the back of the mind of that person so that they can access it when they need it and then go, you know, I’m going to be curious about that. I’m going to go down that path. Or if you take that to your doctor or a clinician or someone in that space and they say, don’t worry about that, then that’s also a good sign for I need to find a new doctor. I need to find a new clinician, someone who’s going to take the feedback and the information that I bring them seriously. Empowering Patients Through Collaboration Jessica Dove London (43:57) Yeah. 100%. 100%. I think it’s that collaboration. know, we have a person on our team right now. He’s not the most knowledgeable, but just, and he isn’t the specialist, but he’s very supportive and really wants to look at evidence and is always helping us find the right specialist. And it’s just an incredibly wonderful experience to have someone who’s on that side of always validating. then she knows that we’re reading more than she is on some of these topics. And I want to help. don’t want to be doing this alone. Like that’s the other thing you want. You want people to help you and have the answers and give you better. You know, you don’t want to be doing the wrong treatment or wasting that, you know, I always think you can’t try everything even if lots of things worked. But you can do things that don’t work or you can do things that are risky. And I think for so long, has been very risk averse. However, there are so many treatments that are You know, have huge outcomes. You know, we, one of the things we did with our son, he started school in continent. And I listened to a podcast interviewing a world leader out of UCLA. They, um, you know, we’ve actually got a lot of these stories, barely we’ve been able to talk before about some of the things we’ve tried, but it’s a, an external device giving, uh, this is a different one building what we talked about, but it’s a device you put on your back. And it was this new breakthrough about, uh, the spine is connected to motor planning and he. within two days became fully continent. And this is a $300 machine. It was free. The protocol was free and he’s completely continent at school. Like that’s his whole life changed. And the reason I did it is because I listened to a podcast with a world leader and it’s heaps of evidence. There just wasn’t yet evidence in cerebral palsy because they just brought it to cerebral palsy from spinal cord injury. And his whole life changed and I actually have a friend who’s a world leading researcher in this space in cerebral palsy and me and him have spoken about this technology and it’s very exciting. But not everyone can go and talk to this world leading research to go, yeah, this is valid. This makes total sense. You should be trying this. And so how many people are incontinent because of that one particular insight that’s not being shared. know, there’s just so many stories like this of things that are low risk, that have really good. ⁓ potential to change people’s lives. Bill Gasiamis (46:17) Yeah, that’s brilliant. We’re going to obviously get the link to that particular device and we’re going to put it in the show notes. Jessica Dove London (46:23) We should do a session just on devices. I love technology. ⁓ Bill Gasiamis (46:28) Yeah, but that’s the beauty of it, right? We wouldn’t have had that information hadn’t it been for this particular product coming up in the search in the results. ⁓ Jessica Dove London (46:37) That’s right. So one of the things I tell Tony is I want new technology and new equipment. And so last week in my update, it found me a patient comment of someone who’s built a device, a hand device to hold things and they have a web link, but they themselves went and built this device. All the plans are online. And because I’m obsessed with new technology, it’s doing that for me. I’m also obsessed with like new wheelchairs and new, you know, know, new scooters and it’s all. Bill Gasiamis (46:44) you Jessica Dove London (47:06) I love this, like that’s one of my personal sort of like things I’m always looking for. But again, that tool is doing some of that, a lot of that lifting for me, because I can’t read it all. Bill Gasiamis (47:17) Yeah, brilliant. love it. I can’t read it all either. And I definitely don’t know what the obscure things are that people ask for my podcast. And I’m expected to know which is a really, it’s a really lovely thing. Like, you know, like people are coming to me for advice and I want to, I want to be the guy I want to be the connector. want to see people to read. Jessica Dove London (47:37) You can actually share that page when you ask Tony, you can do a URL and share that for your listeners so they can get access to it. Just so you know the bottom so they can just share it and see if it’s useful or not. And that’s the thing like it’s more about is it useful or not for you. Bill Gasiamis (47:44) Yeah, I will be doing that. Yeah, I think what I’ll be doing is answering people’s questions because they’re so lovely to ask them. What I’ll do is I’ll do a search for them on tourney. I’ll record the whole thing and I’ll tell them, you know, one of my stroke survivors who listens to my podcast wants to know about this information. Give me the data. We’ll come up with some research. I’ll answer the question. And then like, I’ll feel amazing that that happened relatively quickly as well, which is going to before for me to actually my gosh, I just had that feeling where I’m like that doctor who gets asked these questions and doesn’t know. So says, my God, I’m going to leave that unanswered or or I’ll tell them there’s nothing about that that we can talk about because there’s no information. I just felt like that doctor where somebody asked him the question and I was like, I’ve got no idea what you’re talking about. Just keep doing what you’re doing or what I’m telling you to do. Whereas now that goes away. That feeling of I don’t think I can help you, goes away. We might not be able to have the answers. We might find out that in fact there is nothing available yet in that space, right? So that’s kind of where Tony will also go. It’ll go, well, there’s nothing here. Jessica Dove London (49:04) and might just find things that are related because that’s the other thing. Like if I’d asked Tony about this, this technology, it’s called spinal. It’s confusing because there’s a few things called spinal stimulation, but it’s trans trans. I’m not going to, I’ll give, can put it in a note. So it’s a technical term, but in the cerebral palsy community, call it spinal stim. Yeah. If I’d put that in, nothing would come back because it was only last year that two research papers had come out about this. However, it would find related things because there is a lot of related concepts. that particular technology and that thinking. Like there was actually a surgery of how that was using the same, doing the same amount of healing. But the benefit of obviously using a machine that you put on your back is it’s not, or brain surgery, which is hugely risky or implanting devices and all that. It’s just not always answers. There’s not always evidence, but there is things, there’s not much happening. And that’s probably my last thought to share is just. Bill Gasiamis (49:49) Yeah. Jessica Dove London (49:57) There is so much happening and I think you’ve lived this bill, like there is a lot of new technologies, new treatments, lifestyles. There’s so much happening in the recovery space and you know, there’s a lot of hope to be had. And that’s one of my biggest feelings of this tool when I use it for myself is hope. literally it found me an advantage. my son is very adventurous and wants to be a, I do not want him to be this, but he wants to be like a wheelchair stunt person. And there was an online event about teenagers getting into skate parks. And I just had such hope that there’s all these people out there trying to make like a Yeah, I didn’t attend because I’m like, he’s only 10. I’m like, no, we can’t do this yet. Bill Gasiamis (50:40) I love that you don’t want to I love that you don’t want him to break his arm roller skating. Jessica Dove London (50:47) You Bill Gasiamis (50:48) I love it. love it. That’s what normal, normal moms do. Right. But there you go. Yeah. Oh, of course it does. That’s Yeah, I love it. Absolutely. Um, that’s exactly why I like Tony because it will do things that we’ve struggled to do for a long time is find resources, information, all that kind of thing. And it’ll do it quickly and it’ll do it. Jessica Dove London (50:51) That’s right. dad does take him to the skate park. His dad takes him. And he goes down. It’s terrible. It’s so scary. Bill Gasiamis (51:15) specifically for you and it’ll send it to your inbox. You don’t have to go anywhere. Now there will be a link for people to click on and go across and get a little discount or some kind of like a, can we talk about that briefly? Jessica Dove London (51:31) Yeah, yeah. So we, this is a low cost AI tool. So we charge two US dollars a week for that weekly update. And it actually costs us $2.80 per update just because we read a million tokens per person to generate that. And we want to provide the most valuable, those value and the most accessible, valuable focus. Not everybody can be spending $30, $40 a month on the really advanced AI tools either. But you can try it for free. So you can just try it for three weeks and see if it’s valuable because end of the day, that’s all we want. And you know, we want your feedback. If you’re like, I’d love it to do this, to do that. We’re a team that really just want to, you know, that’s the beauty of being a technology team is we can build some of these solutions pretty easily. So yeah, you can go through the link and get a 10 % discount, but you can also just try it for free and see if this is valuable for you. Bill Gasiamis (52:22) Yeah, I tried it for free for three weeks and the it’s like having subscribed to the full thing because you’ve got everything that it can possibly do in that three weeks. I’ve got a really good feel for it. So I’ll have that linked as well in the show notes. And then if you’re watching this video and you want to get a sense of ⁓ what this thing is like, what it’s like when I use it, et cetera, I’ll be doing my answers to red light therapy and STC 30. Jessica Dove London (52:29) Yeah, 100%. That’s right. That’s right. Bill Gasiamis (52:49) I’ll be doing all those types of videos. People will be able to see it. The website is turnto.ai. So it’s T-U-R-N-T-O.ai. I’ll have the links in the show notes for that as well. Jessica, thank you so much for reaching out, persevering when I was being a little bit slack with my inbox and then, yeah, kind of developing this tool with your team and bringing it to us. really appreciate it. that you’ve done that and that it’s there because it’s definitely going to improve. It’s going to decrease the amount of time that I take to find information to help me as well because I’m a stroke survivor and I’ve got my own stuff I go through. So thank you for that. Jessica Dove London (53:30) been great to be here, Bill Gasiamis (53:31) You’ve just heard how AI can fundamentally change the way stroke survivors find recovery information, not by replacing doctors, but by reducing overwhelm and helping us ask better questions. In this episode, we explored why stroke recovery information feels so scattered, how fatigue and brain fog makes searching harder and how tools like turnto.ai can bring clarity, speed and hope back into the process. If this conversation resonated with you, I encourage you to explore the tool for yourself. You’ll find a listener discount code in the show notes. More information at recoveryafterstroke.com/turnto, and remember this podcast exists so that no stroke survivor ever has to feel like they’re doing this alone. If you would like to support the work that I do here, you can support me on Patreon at patreon.com/recoveryafterstroke. Your support helps me continue recording these conversations and working toward my goal of a thousand episodes. Thanks for listening. I’ll see you in the next episode. The post Tunrto.ai for Stroke Recovery: Why This Tool Is a Game Changer for Survivors appeared first on Recovery After Stroke.
Double Vision After Stroke: What Jorden's Story Teaches Us About Brainstem Stroke Recovery Double vision after stroke is one of those symptoms no one imagines they'll ever face—until the day they wake up and the world has split in two. For many stroke survivors, it's confusing, frightening, and completely disorienting. And when it happens as part of a brainstem stroke, like it did for 45-year-old attorney Jorden Ryan, it can mark the beginning of a long and unpredictable recovery journey. In this article, we walk through Jorden's powerful story, how double vision after stroke showed up in his life, and what other survivors can learn from the way he navigated setback after setback. If you’re living with vision changes or recovering from a brainstem stroke, this piece is for you. The Morning Everything Changed Jorden went to bed preparing for a big day at work. By morning, nothing made sense. When he opened his eyes, the room looked doubled—two phones, two walls, two versions of everything. He felt drunk, dizzy, and disconnected from his own body. Double vision after stroke often appears suddenly, without warning. In Jorden's case, it was the first sign that a clot had formed near an aneurysm in his brainstem. As he tried to read his phone, he realised he couldn't. As he tried to stand, he collapsed. And as nausea took over, his vision became just one of many things slipping away. He didn't know it then, but this was the beginning of a brainstem stroke recovery journey that would test every part of who he was. When the Body Quits and the World Keeps Moving Even when paramedics arrived, the situation remained confusing. “You're too young for a stroke,” they told him. But the double vision, vomiting, and collapsing legs said otherwise. By the time he reached the hospital, he was drifting in and out of consciousness. Inside the MRI, everything changed again—his left side stopped working completely. He couldn't move. He couldn't speak. He couldn't swallow. His ability to control anything was gone. For many survivors, this is where the fear sets in—not only the fear of dying, but the fear of living this way forever. Understanding Double Vision After Stroke Double vision happens when the eyes no longer work together. After a stroke—especially a brainstem stroke—the nerves that control eye alignment can be affected. Survivors often describe it the way Jorden did: blurry, overlapping images difficulty reading nausea when focusing a sense of being “detached” from reality exhaustion from trying to make sense of their surroundings In Jorden's case, double vision wasn't the only issue, but it shaped everything that came after. It influenced his balance, his confidence, and even whether he felt safe leaving his home. Three Weeks Missing: The Silent Part of Recovery Jorden spent nearly three weeks in a coma-like state. Days blurred together. Friends visited. Family gathered. He remembers fragments, but not the whole chapter. When he finally became more aware, nothing worked the way it used to—not his speech, not his swallow, not his limbs, and certainly not his vision. This is something many survivors aren't prepared for: Stroke recovery often begins long before you're fully conscious. Starting Over: The Fight to Stand Again Inpatient rehab became Jorden's new world. It was full of firsts, none of them easy. The first time he tried to sit up. The first time he attempted to transfer out of bed. The first swallow test. The first attempt to speak. Everything required more energy than he had. And yet, small wins mattered: “When my affected hand moved for the first time, I felt human again.” Double vision made everything more complicated, especially balance and spatial awareness. Even brushing his teeth triggered trauma because of early choking experiences in hospital. Still, he kept going. Life Doesn't Pause for Stroke Recovery Just like so many survivors say, the world didn't stop for Jorden to recover. On the very day he left inpatient rehab, his close friend—who had also lived with paralysis—died by suicide. Not long after, his dog passed away too. It felt unfair. Cruel. Like everything was happening at once. But even in that darkness, Jorden found a way to keep moving. Not fast. Not perfectly. Just forward. Learning to Walk Again With Vision Working Against Him Double vision after stroke made walking terrifying. Every step felt unpredictable. Every movement demanded complete attention. He used a slackline as a walking rail. He held onto countertops, walls, chairs—anything that would keep him upright. He practised daily, even when the exhaustion was overwhelming. This is something survivors often underestimate: Vision problems drain energy faster than physical limitations. Your brain is constantly trying to make sense of visual chaos. Of course you get tired faster. Of course progress feels slow. But slow progress is still progress. Humour as a Survival Tool Many survivors rely on humour to keep themselves grounded. For Jorden, it showed up in moments like these: His leg falling off the footrest of a wheelchair and being dragged without him realising. Gym sessions where he pushed through fatigue—even after peeing his pants slightly. Laughing at situations that would've once embarrassed him. Humour didn't erase the trauma, but it gave him permission to keep going. “Now it's me versus me. Every step I take is a win, even if no one sees it.” What Jorden Wants Every Survivor to Know Recovery doesn't end after 12 months. Double vision after stroke can improve—even years later. Brainstem stroke recovery isn't linear. You're allowed to grieve what you lost and still fight for what's ahead. The simplest achievements matter. Hope is not naïve—it's a strategy. His story is proof that even when everything falls apart, life can still move forward. If You're Living With Double Vision After Stroke You are not alone. Your progress might feel invisible. Your days might feel slow and frustrating. But your brain is still rewiring, still adapting, still learning. And you don't have to navigate that alone either. Take the Next Step in Your Recovery If you want guidance, support, and practical tools for rebuilding life after stroke, you're invited to explore the resources below: Read Bill's Book: The Unexpected Way That a Stroke Became the Best Thing That Happened Join the Patreon: Recovery After Stroke This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Jorden Ryan: Living With Double Vision After Stroke & Finding a Way Forward He woke up seeing double, and everything changed. Jorden's journey through double vision after stroke shows how recovery can begin in the darkest moments. Jorden’s Facebook Highlights: 00:00 Introduction to Double Vision After Stroke 03:15 The Day Everything Changed 10:26 When the Diagnosis Finally Made Sense 16:32 Surviving a Second Stroke 21:47 What Recovery Really Feels Like 32:16 The Emotional Toll No One Talks About 44:57 The First Swim After Stroke 54:08 Finding Light in the Darkest Moments 59:28 Living with PTSD After Stroke 01:15:01 Being Told “You'll Never…” by Doctors 01:26:40 Finding Meaning After Stroke Transcript: Introduction to Jorden Ryan’s Double Vision After Stroke Bill Gasiamis (00:01) Welcome again to the Recovery After Stroke podcast. I’m Bill Gasiamis. And if you’re listening right now, chances are stroke recovery feels confusing and isolating. I get that. I’ve been there. Leaving the hospital, feeling lost, desperate for clarity and unsure of what comes next. That’s why this podcast exists. Recovery After Stroke gives you real stories and expert insights that help guide your recovery so you can feel more confident, informed. and in control of your progress. And so you never have to feel alone or uncertain again. Today you’ll hear from Jordan Ryan, a 45 year old attorney who woke up one morning and nothing worked anymore. His story is raw, honest, and filled with moments that every stroke survivor will recognize. Fear, frustration, identity loss, and the courage to begin again. But I won’t spoil the episode. I’ll let you hear it from him. Jordan Ryan, welcome to the podcast. Jorden Ryan (00:58) Thank you, Bill. Happy to be here. Bill Gasiamis (01:01) Great to have you here. So if I recall correctly, your stroke was in March, 2024. So not that long ago. What was life like before that? Jorden Ryan (01:10) Life, I would say, was pretty normal. I didn’t have any symptoms or anything and I was a attorney. I walked to work every day about two miles and everything was going well. So right up until the night that I went to sleep, I had no symptoms at all. Bill Gasiamis (01:26) What kind of person were you then? Your routine, for example, and your relationships, where were they at? What kind of life did you lead? Jorden Ryan (01:34) I was awesome, right? No, just kidding. Yeah, they were good. Like I had a lot of friends and work colleagues and they did a lot. Like I was mostly a social person and went out a lot. So not home that much. I mean, I made a lot of friends in my loft, like down the halls were a lot of friends, but I lived by myself. Bill Gasiamis (01:55) ⁓ Well, if you thought you were awesome, I’m going to go with that. I got no problem with you thinking you are awesome. What about your health? Did you have a sense of your health? You know, we often talk about how we felt and what we were like and how energetic we were. Did you have a sense of where your health was at now in hindsight? Jorden Ryan (02:17) No, I did not. Actually, ⁓ I had a deviated septum from somebody hitting me in the face a while back from me trying to stop a fight. And so it took three surgeries to finally get it correct. Like they had to take a piece of my rib and some of my ear to straighten out my nose. But anyways, I say all that because it made me gain a lot of weight and I guess have sleep apnea. I didn’t know that, but you know, the girl I was dating at the time told me. So anyways, I got it fixed. And I had just seen a person to help me lose weight, the doctor and everybody. so I thought my health was good. And I had probably maybe a year and a half ago, I got into a jet ski, just knocked on conscious when I hit the water. So they did a cat scan and I didn’t know, but I thought that when they did that, I was fine. I was healthy. I didn’t know it would take an MRI to know that stuff. So I felt. totally fine until the event. The Day Everything Changed Bill Gasiamis (03:17) So after the nose surgery, things started to improve with regards to your weight and your sleeping. Yeah. Jorden Ryan (03:22) I don’t know that, like, I tried to get a CPAP machine before my surgery and yes, I was starting to work out more but I was still a little bit tired I guess but I mean nothing like, un-normal like, really bad or anything like that. Bill Gasiamis (03:38) Yeah, I do hear that sleep apnea is kind of that strange kind of a thing that people don’t realize they have until somebody diagnoses it and says to them, this is why you feel so drained, so tired all the time. And then they get it resolved in one way or another and things improve, especially with a, sometimes with a CPAP machine. So, ⁓ but then you’ll fit an active and you were pretty well. So take us back to that moment of that first stroke or what? What was it like? What happened? Jorden Ryan (04:08) So when I had ZPAP like to get a diagnosis or whatever they sent something in the mail and you just put it on your finger it was not as comprehensive as an actual sleep study and they said well that will be fine anyway so I got the machine it was very hard for me to sleep with so it would keep me up it did the exact opposite of what it was supposed to do so anyways that night I went to bed I had a big day the next day work call international call and I was gonna be the only one on the call, only attorney on the call. And so I woke up, I could not sleep, which was kind of normal with the CPAP machine. So I watched a movie and then went to sleep maybe an hour before it was time to wake up. And I went to bed and my alarm went off and I got up and I felt like really strange. I saw double, basically like I felt like I’d been drinking all night or something. Then, ⁓ I called into work and said, I’m sorry I cannot help you. Like, I was looking at my cell phone, which I do all the time, and I couldn’t read it or anything like that. being, you know, kind of naive, I think I took a quick shower, like, rinse some cold water on me, thinking maybe that would fix it. No, that’s ridiculous, but I thought it would, and when it got worse, that’s when I called on my one. Bill Gasiamis (05:35) Yeah, how long did they take to arrive? Do you feel Jorden Ryan (05:38) Mmm, I felt like forever, but I think it was pretty short. I lived in the city So the ambulance was right down the street. So I think like maybe 15 minutes or something like that Bill Gasiamis (05:49) Were you able to let them in? Jorden Ryan (05:52) I was, I, you know, the dispatch 911 person said to make sure I unlocked the door first. I thought I was having a stroke, but I fell down on my knees and laid against my bed and it was very difficult to go open the door to let them in. So yes, I was able to unlock the door and I did that. And I just started throwing up like more than I’ve ever vomited before in my life. Like something was really wrong. my leg went out. I didn’t know that it like couldn’t move at all. I just fell backwards and it was kidney due to throwing up. So then they came and I was still able to stand and talk and I felt, I mean, other than throwing up and double vision, I felt fine. So they told me that I was probably too young to have a stroke and that maybe it was just ready to go. So I was thinking that, okay, well I’ll just go to the hospital and you know, get checked out and I’ll come home early. But it seemed to get worse as things were going. I pulled myself up onto the gurney the EMTs had and I remember thinking like I’ve got to go to the hospital now and they were like being nice and getting my stuff and my phone and whatever else and if I threw up they were getting the trash can and I remember thinking I didn’t care if all of my stuff was stolen. I need to go to the hospital now. So we definitely got up there. When I was kind of in and out of consciousness by that time and I got to the hospital and they checked me out like an actual MRI. And when I was inside of it is when my left side of my body completely quit working. So I didn’t know what was going on. I mean, I had no clue. So I pulled myself out of the MRI. And some people get claustrophobic or whatever, but this was a square machine and because I felt sick already and half my body quit working while I was in there, it really put fear in me to get out. Bill Gasiamis (07:59) ⁓ So you had the right to the hospital, they saw you rather rapidly before they got you into the MRI? Jorden Ryan (08:10) The EMTs did see me pretty quick. They did not think I had a stroke, so it wasn’t as maybe punctual as possible. they were still… I mean, the fire department, I think, was maybe a quarter of a mile from my house. So they got there pretty fast. Bill Gasiamis (08:27) Yeah, okay. So when you got to hospital, what was that like? What happened then? Jorden Ryan (08:33) Yeah, by the time I got to the hospital, I was barely able to be coherent at all. Like someone would say, hey, Jordan, I would bring me to for a second, like, what is your phone number? And I could answer, but then I would be out again. when they were taking me to the MRI, they kind of with me. And this was the first time that I was frightened for my life. I think that one of the nurses was like, I can’t believe they’re going to waste the time to do MRI on this person. He’s gonna die anyway. There are people that need them. Machine. Bill Gasiamis (09:04) Wow, they didn’t say that, did they? Jorden Ryan (09:07) Well, I was like, couldn’t talk, couldn’t move. I don’t know if they said it for real, but I think so. I believe that’s what they said. then I was like, this is not how I die. I’ve done so much crazy stuff. can’t be just cause I was going to work early in the morning. ⁓ Bill Gasiamis (09:22) Wow. So you have a sense that that’s what they said while you’re being, while you’re on the bed being moved to the MRI. Jorden Ryan (09:32) Well, I was in going to like a holding area, like a waiting area to do MRI. Yeah. And so they left me and I couldn’t move. And so it was pretty scary. Yeah. And then after the MRI, the nurse did say, you know, we need to call your family. And so I did unlock my iPhone and I remember her calling, but it’s kind of hazy in and out of that. And I think They said, need to call the family so they can say their goodbyes. I think I overheard that. And I was like, what is going on? This can’t be this serious, right? So I really do believe I did hear that though. Bill Gasiamis (10:12) Seems like they may have very quickly upgraded your condition from vertigo, which they originally said when they arrived and seems like they kind of knew that something else dramatic was happening. Jorden Ryan (10:19) Yeah When the Diagnosis Finally Made Sense That’s correct. I wish it would have been just ready to go. Right. But it was all of a sudden went from, you know, pretty good news or decent, extremely dire consequences or like something bad was going to happen. Yes. Bill Gasiamis (10:42) Yeah. How old were you in 2024? Jorden Ryan (10:46) I was 45. Bill Gasiamis (10:49) Yeah. And do you have a sense now? Do you understand what it was that caused the stroke? We’ll jump back into Jordan’s story in just a moment. But first, I wanted to pause and acknowledge something. If you’re listening to this and stroke recovery feels confusing and isolating, I want you to know you’re not imagining it. I know exactly what that feels like. That’s why I created Recovery After Stroke to bring you real stories and insights that guide your recovery and help you feel more confident, informed and in control. And if you’d like to go deeper, remember to check out my book, The Unexpected Way The Stroke Became, The Best Thing That Happened, and support the show on Patreon at patreon.com slash recovery after stroke. Jorden Ryan (11:34) Yes, I do have ⁓ an aneurysm in my, ⁓ in the brainstem. can’t, it affected the pontine area and the salabella. Like I cannot remember the nerves. Unfortunately, I’m sorry. The veins that it’s in, but it is really big and the blood being kind of, ⁓ kind of mixed around. mean, like because my vein is so wide, the clots can form just. Yeah. Bill Gasiamis (12:03) Okay, so with an aneurysm, you’re at risk of it bursting, but then because of the different shape, the high pressure and the low pressure systems that occur in the aneurysm create a different blood flow. It causes the blood to turn into a clot and then perhaps get stuck there. And then when it gets big enough, it can break off or move and then it causes the clot. Jorden Ryan (12:31) Yeah, I don’t know if it breaks off and or just makes a clot and get stuck in there, but same concept, I think. Right. And so, yeah. Bill Gasiamis (12:40) Okay, so then you know that now after they did the MRI, what happened then? Did you have to ⁓ go through some kind of a procedure to sort out the clot and to remove the blockage and to fix the aneurysm? What was the situation? Jorden Ryan (12:59) Yeah, unfortunately they cannot fix aneurysm. They are just throwing as much medicine as they can, like all the tools that they have at the disposal at this time. But after they found out I had a clot, they’re just kind of like, let’s see what happens now. So that is when I went kind of again unconscious in probably about three weeks. I do not remember very much at all. Bill Gasiamis (13:26) Okay. Was that because they were, were in an induced coma to help you with it, with the healing? Jorden Ryan (13:32) I don’t think it was induced. think it was just my body went into a coma. mean, at the time I thought probably I was just very tired because I’d only slept an hour, but I mean, three weeks is a long nap. So a lot of my friends come in to visit me in the hospital, but I was like, I felt like just tired, but I didn’t feel bad. Like I was going to die or something. But so it was very strange because I felt very coherent. Like every day is just a different day. but my body like wouldn’t move like I could tell my left hand to move and it would not. So, but other than that, like, ⁓ I felt normal so to speak. Bill Gasiamis (14:13) I can see those three weeks. Did you have a sense that you had a stroke? Did that actually sort of say you’ve had a stroke? Did you understand that for the first time? Jorden Ryan (14:25) Yeah, I understood that I had a stroke, but I just didn’t understand what that meant. Like, for example, to sit up, which I would do in my whole life, I was not able to do that anymore. So during that three weeks, they would have a hoist system to move me to a couch. So I wouldn’t get bed sores, I think, you know, just precaution, but that was like a really scary, like I did not like that at all. was, which would normally be super easy. ⁓ Yes, they said I had a stroke, but I had no idea how bad it was. Bill Gasiamis (14:58) Yeah. family and friends. You had people rally around to do people have to fly. Excuse me. Do people have to fly in or come from out of town or were they all nearby? How, how did you go and see that? Jorden Ryan (15:13) I think that my sister put something on Facebook, on my Facebook. And so I had people close by and I did have people fly from a couple of different areas because at that time I think I was in ICU. So, you know, that may be the last chance I had to talk to me. So they did come say goodbye, but the hospital for so long, I mean, people got me flowers and I would think that would be as long as possible, but then those flowers would die. and people would bring plants and when those died, I mean, wow, that’s really a long time to be in the hospital, you know? And the plants died because I couldn’t water them because I’m paralyzed, so, at that time. Bill Gasiamis (15:54) Yeah, how long were you in hospital in total? Jorden Ryan (15:58) The first stroke I was probably, I got out May 17th, but that’s out of the inside rehab that what do you call inpatient rehabs? think that I was in hospital for maybe three weeks, maybe a month. Like, you know, they downgraded me from ICU for a week and then sent me to the internal rehab. Bill Gasiamis (16:23) Yeah, so the stroke was March 22 and then you got out of hospital in May. Jorden Ryan (16:29) That’s great. In mid-May, yeah. Surviving a Second Stroke Bill Gasiamis (16:32) Yeah. And you said that that was the first stroke. So was there another stroke? Jorden Ryan (16:37) Yeah, it’s crazy. So I had my first stroke and then I really tried hard like no sugar, no pop, no alcohol. I did everything I thought is best I could and even in rehab they had me bake cookies and I didn’t eat them because they had sugar in them. And then I had another stroke when I woke up to go to rehab. So that was October 7th. So it was, it started out with just my hand wouldn’t move like it should like I was regaining everything back pretty well from the first stroke. And I thought I was Superman basically. I was healing pretty fast and I was like, I beat it. This is great. And then right back to being in a bad stroke and being a wheelchair and all of that. Bill Gasiamis (17:25) So the same issue in the cerebellum near the pons again caused another clot or was it just something else that happened? Jorden Ryan (17:34) No, you’re right. It was the same thing, basically affected the same areas of my brain. So they say that your brain with spasticity can do like a detour. So now I have a detour of a detour, basically. So my brain had just rewired and was working pretty decently and then that area got damaged as well. Bill Gasiamis (17:57) Okay. And were you on blood thinners or something to help thin the blood to kind of minimize the risk of another blood clot or? Jorden Ryan (18:06) Yes, I was on the Eloquist, so I thought that that would be enough, but it was not. So now I am also on aspirin, but it’s just a small pill every day. I think that, like I said, they don’t really have a whole lot they can do. So they’re just telling me to take this medicine out for the best and maybe it will happen again and maybe it won’t, but they can’t operate on it because the risks outweigh the reward. Like there is a Good chance of death. Bill Gasiamis (18:37) Yeah, understood. How long did you spend in hospital for the second incident? Jorden Ryan (18:42) I was out, ⁓ towards the end of November. think mid and like either the second or third week in November. Bill Gasiamis (18:52) And then when you left hospital that time, you left with the deficits, which had kind of eased up or you didn’t really have before the, after the first one, is that right? Jorden Ryan (19:04) Yes, that’s right. I will, will wheeled out in wheelchair and had no use of my leg or my arm and my face was not really healed from the first stroke, but a little bit and I still had that too. I could not talk. I couldn’t eat. I couldn’t drink. Like, I mean, I could, guess, but not how, yeah. So like holding glass to my face would come all over down my face and stuff. so This area right here always felt wet. Like it felt like I was in a pool, even though I wasn’t. So I couldn’t tell if I had food all over me or what have you that I would have to rely on people to tell me. I could chewing a salad is, I mean, it was really, really hard. That was kind of the, as I advanced, that was something I could do. My first stroke, I could not, you know, a steady is it. I don’t know if you know what that is for using the restroom. It’s like a basically a dolly. put you on and I had a really hard time even trying to use that. I went through a lot of swallow tests. I could not swallow my own saliva. So that was very difficult for me. ⁓ They brushed my teeth and I felt like I was gonna die. I could not breathe. Like probably for that went on for like five minutes. Like, I mean, I could breathe, sorta, but it was very difficult. Bill Gasiamis (20:29) They brushing your teeth for you and it, and it, and triggered some kind of a reaction or. Jorden Ryan (20:34) Like the yeah, the saliva that you have in your mouth that is I mean was enough for me to drown in basically I guess Yeah Bill Gasiamis (20:45) So it wasn’t the actual tooth brushing. It was the saliva that was being generated that you couldn’t. Jorden Ryan (20:50) I so. didn’t know for sure what it was, right? Like, but I’m pretty sure was alive. It was something I couldn’t manage. That’s for sure. And it just tasted like toothpaste probably because I just had done brushing my teeth. But they did give me a peg tube so I could get food and nutrition and water in me. However, the way that they installed it the first time was ⁓ caused ulcers in my… I think in my colon, so I had to go back to the ICU. Bill Gasiamis (21:24) Yeah. Such a dramatic time, right? A lot of stuff going wrong. What’s going through your head at the time? Because you went, like we said, like it was a year earlier, everything was going fine. Everything was all okay. And now you’re dealing with all this stuff. How do you, you know, what are you saying to yourself? How do you feel about what’s happening to you? What Recovery Really Feels Like Jorden Ryan (21:47) I wish that I could give you like a really good answer, but to be honest it was more like, why is this happening to me? I can’t believe this is happening. I’m too young. Like I have to take decent care of myself. I cannot believe this. I mean, when I was in the hospital, I was watching like my 600 pound life and like, I’m just saying that I was, I thought, you know, at least that healthy, but at that time I was really devastated by what was going on. Bill Gasiamis (22:16) Yeah, you would be, it makes complete sense, right? How do you go from being quote unquote normal? Everything’s just going along as it always has. And now all these hurdles that come your way that are really challenging to overcome. you probably don’t have the skillset to deal with them in such a dramatic short amount of time. Jorden Ryan (22:17) Yeah. Yeah, I think that’s right. And I think probably if it would have just been on me, maybe I could have, but I was like, I’m going to be such a huge burden to my family in my way life is going to be so bad. Like, I was just like, how is this happening? You know, I don’t smoke and like, I don’t do heavy drugs or any of that stuff. So what is going on? And then they said, well, you must drink a lot of energy drinks. And I was like, no, I don’t drink any energy drinks. So they’re like, we don’t know what’s going on then. So just that was. So for me, I really didn’t know what was going on. Bill Gasiamis (23:15) Yeah. And in hindsight, it was just random. It’s just one of those things with the aneurysm and how can you possibly, how can you possibly deal with it when you don’t know that it’s happening to you? Similar to me, like I had a brain hemorrhage three times because of a blood vessel that I was born with. I wasn’t having the best lifestyle, but I also wasn’t causing it. I also didn’t. I wasn’t able to solve it. Everything was kind of handed over to other people. It’s not, it was nothing. It was not up to me. And I had to just kind of go through it. Jorden Ryan (23:51) Very similar. was, you know, couldn’t be in charge or control anything basically, like even really simple things. I mean, I had a diaper on, I couldn’t even go to the restroom by myself. So it was just very hard. It was a lot of stuff all at once, right? Like, it wasn’t just like I a cold or something. It was very difficult. And at first, when I was there, I couldn’t talk. So people would come and visit me but and to me what’s very strange is that my voice sounded exactly the same before the stroke which it didn’t in real life I was probably like I have no idea what I sounded like but people couldn’t understand me so I would say something to them and they’re like sorry I can’t understand you but in my head I said it perfectly it sounded like me I can hear ⁓ like my slur now but I could not at first Bill Gasiamis (24:47) Yeah. Yeah. It was there somebody that you met who helped support you and guide you through those really sort of tough bits early on, like was there kind of a mentor or somebody that came out of nowhere and just helped you navigate this? Jorden Ryan (25:06) ⁓ I don’t know really like who navigated like how it happened, you know, I had a chaplain that came in there maybe a doctor would help I Didn’t have my phone or anything at the time But when I was able to do that I saw your channels and stuff and so I listened to it and probably the totality of a lot of things there wasn’t like a one person or one thing that helped me really a lot so I remember being kind of upset at you because you said it was the best thing that ever happened to you and that was it was too new for me. I was like, what do you mean? That’s not possible. And a nurse came and said, well, you have the beautiful blue eyes and that my eyes are green. So I was like, well, maybe my hair will grow back and I’ll have blue eyes. Maybe it’ll be the best thing that ever happened. But yeah, I mean, I wasn’t really mad at you. I just said the time I could not accept those that verbiage. Bill Gasiamis (26:02) that is perfectly understandable. And it’s exactly why I chose the title, not to piss people off or make people upset while they’re recovering. In fact, I never expected that people would find it so early on in their journey. I just thought it was a story I was gonna tell and it was gonna go out there. But of course, the very first time I spoke about my book a few years ago on YouTube, the very first comment was a negative comment along the lines of, Similar to what you said. It was a bit more rude. It wasn’t so polite ⁓ And I and I was like, ⁓ no, no, no, you guys have got it wrong I don’t think I think you missed the boat. No, sorry. You missed the point the point being that It was really terrible when I was going through it for three years But when I came out the other side, there was a lot of personal growth. There was a lot of ⁓ Things that I had appreciated that I’d done that I’d learned that I’d overcome etc that became the reason why I was able to say it was the best thing that happened to me because I started a podcast, I wrote a book, I’ve spoken publicly about it, I have this platform, I’ve created a community, all these things, right? So the things that I didn’t know that I was lacking in life before the stroke, I thought my life was complete, waking up in the morning, going to work, coming home to the family, cooking dinner, paying the bills. paying the mortgage, the car lease. I thought it was all cool, all complete, but I was kind of unhappy. There was a lot that I was lacking in my life. And only because of the stroke journey, the end result of the podcast, the book and all that stuff, did I realize, ⁓ actually the… Aftermath, the things that I have grown and discovered were the best things that happened to me. And it was because of the stroke. It’s such a weird and dumb thing to say. Like I can’t even wrap my head around it, that I had to go through something so dramatic to accomplish some amazing things. I wish I would have just done it before the dramatic events. I wish there didn’t have to be one. And that being said though, I’m 13 years. post stroke, the first one, and I still live with the deficits. I still have problems sleeping on my left side because it’s numb and it’s burning and it tingles and all that kind of stuff. When I get tired, I still have balance issues when, ⁓ you know, sometimes my memory is a bit flaky because of it, but you know, a little bit, I still have deficits in my muscles and spasticity and all that kind of stuff and it hurts. I’ve accepted that part of it. how it feels in my body, but I’ve also ⁓ gone after the growth. Like I’ve really, ⁓ seriously, dramatically gone after the post-traumatic growth that comes from a serious episode. And what I hope- Jorden Ryan (29:10) explaining that in other episodes. was just my friend that I had heard and I was still like too bitter to hear that. Right. And now I kind of make sense. Like there are a of things that I didn’t appreciate as much as I should have. All the cliches, know, kind of true. Like I wake up and like that is a good day then because most of my stroke, both of my strokes came from when I was sleeping when I woke up. So kind of like Bill Gasiamis (29:21) Yeah. Jorden Ryan (29:38) Even being in the hospital, I saw more sunsets than I did in my regular life or post stroke, whatever you want to call it. I definitely get it and I can appreciate what you’re saying now, but after that time, was just more difficult. Bill Gasiamis (29:45) Yeah. I definitely come across people regularly, even though ⁓ I’ve been speaking about it for a little while, who come across the first podcast episode that I’ve done, that they’ve found in the 370 odd. And then they hear me say that again. And then there’s also, there’s sometimes a repeat of that incident where I know exactly where they’re at. Like I know exactly what’s happening. I know they don’t know that. And then what I hope that happens is say in three or four years, they can, when they go, there was that crazy guy who said stroke was the best thing that I wonder what that was about. I’m going to go get that book now and I’m going to read it. And I’m going to see if I can, you know, shift my mindset from perhaps something that’s been bugging me to something that we can grow from. And the book has got 10 steps to recovery and personal transformation. It not 10 steps to getting your perfect walk again, or making your hand work perfect again, or you know, getting rid of your deficits. It’s not that kind of book. It’s an inspiring book. We’re trying to give people some tools that they can use that doesn’t cost them any extra that will improve the quality of their health and their life. And it doesn’t matter how injured you are because of a stroke. That’s what the book helps people to do. I love challenging people. I’m not, of course, you know, I’m not intending to make people think that I promote. stroke is something that they must experience as ⁓ you know. Jorden Ryan (31:23) the ⁓ Bill Gasiamis (31:26) Yeah. ⁓ It’s not on audible. I am going to remedy that at some stage. I’m going to remedy that and I’m going to get people the ability to listen to it because ⁓ Jorden Ryan (31:46) Well, I will be your first customer, hopefully. Bill Gasiamis (31:49) Yeah, a he-man. Jorden Ryan (31:51) cannot read because my eyes are cro- like not crossed but I have double vision so they are off I cannot read so but yeah Bill Gasiamis (32:01) ⁓ After your three weeks in ICU the first time, I think you began inpatient rehab. What were those days like going through that first few motions of trying to get yourself up and about? The Emotional Toll No One Talks About Jorden Ryan (32:16) Yeah, it was very emotional, right? because you want right away, I thought just to get back to where I was. And I mean, I read some other things and I had friends of friends send me stuff and that chapter of my life is over. I mean, it was a good one, but it’s time to rewrite another one, right? Like I have to move forward. So the whole journey was really difficult. Probably took me longer than most people, but, ⁓ I was very lucky in the fact that I had a friend that had told me like, hey, you have done hard things before you were, you know, in Muay Thai, you were a attorney, you can do it again. And then in my mind, I was like, you’re not a brain doctor. What are you talking about? Leave me alone. So even though the expression was being really nice internally, that’s what I was thinking. Then I saw something like, um, it was, you know, I think it was a PT, a physical therapist who said, think that you’re gonna heal yourself in three hours a week or a day or whatever, that’s not it. Then I had another friend who told me that his sister had a stroke and she wished she would have done more during recovery. So I eventually got to the point thinking like, well, all these doctors are saying it depends, which is a fair answer, right? And I tell clients that and they hate it. But I thought that’s better than absolute no. They’re not saying and so they’ve made it to me like, well, maybe I won’t get better, but it’s not going to be from me not trying. I think another one of the people on your episodes ⁓ saying like they were always very positive and I was like, that’s not me. That’s I’m not 100 % going to be better. That just wasn’t my attitude during it. I mean, it’s good. wish I would have been, but unfortunately I wasn’t. But it kind of. Over time it’s gotten better, but at first it was very difficult for me. Bill Gasiamis (34:17) Yeah, that’s completely understandable. ⁓ You had, did you have some small wins in rehab that kind of made you shift a little bit slowly and kind of realize you’re making ground or things are, you’re overcoming things. Jorden Ryan (34:35) Yes, I did. I was very lucky in the fact that, I mean, I would just notice my therapist face like when my affected arm started to work or I did something, they didn’t say like, that’s unbelievable. But it was kind of like I was making progress faster than a lot of people. And I’m not saying I’m better. I was very lucky and I would never come to other people, but they were like, wow, that’s really amazing that you’re able to do that. So it was, it felt good. Being able, like, even just to move my finger, like, in my defective hand for the first time was huge, and then I was able to use my thumb to… I feel human again. I mean, to be honest with you, when I couldn’t talk and I couldn’t move and everything, it just felt weird, like it wasn’t me. Bill Gasiamis (35:22) Yeah, absolutely. So were there some setbacks during that time as well? Jorden Ryan (35:27) There were some setbacks. I, again, I watched one of your episodes and a gentleman told me, like I said, he had the fatigue set in later on in his journey. And so one of the things I was like, well, I’m so lucky that I don’t have that because I go to the gym pretty often. And that would be devastating to have fatigue. And then I also had fatigue. I mean, to the point where I didn’t want to move around at all. didn’t want to get out of bed hardly so there’s setbacks in the fact that like my my sister and brother-in-law luckily took me in I mean they were like ⁓ angels so to speak but they live in a big one bedroom app like one one floor house I meant to like a ranch style and just going to the bathroom was a setback because it would take forever to walk down the hall or whatever I mean it was my gate it was a walking style was Pretty hilarious there, you saw me. Bill Gasiamis (36:27) And then fatigue doing that walk also then ties you out. Jorden Ryan (36:34) Yeah, just walking to the bathroom did tire me out. So, like, to brush my teeth, I’m already scared of, like, not feeling well. Plus, walking all the way there and brushing my teeth and walking all the way back, it would be… I would really have to get my strength together to do that. Bill Gasiamis (36:53) A journey, a proper journey. Jorden Ryan (36:55) I had to do it because I didn’t want to wet myself or soil myself, but it was very difficult. mean, looking back, it’s like, wow, that stuff was so easy now. But at that time, it was not easy. was very difficult. Bill Gasiamis (37:11) Yeah. I remember being in a similar situation and I don’t have that far to go to the toilet from my couch where the lounge room is and the TV is. But I remember going to the toilet and getting back to the couch and then being completely wiped out. that’s it. I was done for hours, done for hours, just sitting there resting and then hoping to get enough energy to get back up off the couch and be okay. Um, that was very early on. That was probably a few, maybe about four five months after the second bleed, it was still very dramatic. And I couldn’t really appreciate how ⁓ I took for granted that trip before that. Like it was just, it never crosses your mind. Jorden Ryan (37:55) You wouldn’t even think about it, right? Like getting out of a car to walk to the house was very difficult for me. Or when I came back, I would just fall on my bed because I was worn out. But before that, before my stroke, I would not ever think about that kind of stuff. Yeah. In a wheelchair at first, but I walked around the house with a walker and like two laps inside the house would wear me out. That’s maybe one. Bill Gasiamis (38:11) Yeah, hell no. Jorden Ryan (38:24) Like, one hundredth of a mile is not much, or not even close to a kilometer, and that would wipe me out completely. Bill Gasiamis (38:32) Yeah. You find yourself thinking about the steps that you’re taking. Are you putting a lot of brain energy into the actual task? How your leg is moving? What was the process like for you? Jorden Ryan (38:44) Yes, my- so all the things that your body does without you thinking about were affected in me. Like blinking, I have to think about it. To move my arms at the same time, I have to think about it. So to walk was- I had to really be like, okay, which foot goes first? Left foot. Okay, now what foot goes next, right? It sounds ridiculous, but that’s really what I was like. My mind was, I had to think every time like learning to walk. I was like, what hand goes in front? with what foot? Like it was, I mean, very, very basic, like to the beginning, right? Like before elementary school, like it was, so everything I did was taxing mentally because I just had to think about stuff that you don’t normally think about, right? Like Okay, I should breathe. It wasn’t quite as bad as that, but that’s pretty close. Bill Gasiamis (39:37) Wow, So in the notes that we shared between us, you mentioned something about the first time you were taken out of hospital ⁓ to go and eat, I think. Tell me a little bit about that story. What happened then? Jorden Ryan (39:53) Sure, so I noticed, to start a little bit further back, I lost my hearing. It wasn’t when I first had my stroke, but when I was in rehab, they were actually changing my diaper. And so I would lay on each side and I noticed when I laid on the side, I could not hear them. They were telling me to roll over or something. And so I had lost my hearing completely. Then, um… When I got out of the hospital, my friends and family and whatever got together and took me out to eat and the noises were so loud that my senses were too heightened. It was confusing to me. I had a lifetime of going out to eat with friends and going to drinking or whatever. This was just a lunch and I couldn’t really handle it. It was almost too much for me. The car ride from maybe a three hour car ride, had to close my eyes because I would feel sick if they were open. it was, I realized just how different my life is gonna be, right? Bill Gasiamis (40:59) Yeah, did that make you want to avoid those types of events? Jorden Ryan (41:02) Yes, I have to push myself to do that kind of stuff because I don’t know, I think it’s easy to become depressed, right? Like, it’s easy to just be like, I will just sit here on the couch, watch TV. I don’t really watch TV, but… And even that is hard with my eyes doubled, but I mean, like, I push myself to hang out with friends or go to eat or something. But it’s very difficult. I would rather just stay home. If you just ask me, like… I mean, I’m always excited to go out with people, that’s not what I mean, but it just is easier to stay home. Bill Gasiamis (41:37) Yeah, I understand that easier to stay home. It’s a trap as well, isn’t it? It’s a, if I stay home, I don’t have to deal with all those difficulties, all those challenges. I don’t have to overcome anything. I can just have the easy way out. But then that you pay a price for that as well. That’s not, it doesn’t work like that. You have to pay the price of, well, then you don’t go out and then you’re alone again. And then you’re in your thoughts again. Then you don’t interact with people again. And It’s not the easy way out. seems that way, it’s potentially leading you down a path that you don’t want to go down. Jorden Ryan (42:11) You’re exactly right. I tell people that because I’m so lazy, I try so hard now because I don’t want to have that life like that forever, you know? So I try very hard now so I can be lazy if that makes sense. Bill Gasiamis (42:26) That makes complete sense. love it because it’s kind of like you’re lazy. Jorden Ryan (42:31) Right, exactly right. You know, because going to the bathroom, if that’s hard forever, that’s gonna be terrible. I gotta get up and walk and have to go out with people. then life is not as hard, hopefully, because you’re doing the things, right? So. Bill Gasiamis (42:47) Yeah, yeah, and you’re getting all the genuine awesome things that come from interacting with people, going out, being ⁓ in public. ⁓ I know what you’re saying about the kind of the earning our lazy kind of thing, right? Because I would say to myself, ⁓ Saturday, I’m gonna go hard. Now, hard for me might’ve been just to literally go to an event and stay an hour longer than I normally would have stayed, whether it was a family event, a party or whatever. And then I’m gonna be really exhausted tomorrow. I know that tomorrow I’m gonna be really, and I’ve got nothing booked in. I’m gonna do absolutely nothing for the entire day so that I can go out and go hard tonight, whatever tonight looked like, whatever that was gonna be like. And that was where I earned my recovery, my lazy. I’m sitting on the couch and I’m watching TV or I’m reading a book or I’m not doing anything. That’s exactly how I kind of used to talk to myself about doing nothing on the following day. Jorden Ryan (43:54) That is a good way to put it, earn your laziness. Like that is exactly what I did. I did something hard or out of my comfort zone and then when I was lazy I felt better about it. If I just wanted to stay home and watch TV, I mean I would have won the lottery basically, you know, like that would be my life. But because that is not what I want to do, doing hard things and then being lazy is a good way to look at it. It would make me feel better about myself. people and everything just kinda makes it harder to be depressed. Bill Gasiamis (44:32) Yeah, agreed, 100%. I would encourage people to get out as much as they can. ⁓ Now, I’m very interested in your thoughts about this. Your first swim, I wanna know what that was like, cause I had a first swim as well. I remember my first swim after waking up from surgery, not being able to use my left side and needing to rehabilitate it. ⁓ What was it like for you to experience that? The First Swim After Stroke Jorden Ryan (44:57) Yeah, so I’ve been swimming before I can remember when I was a kid. So like being by a pool was very scary for me because I thought if I fell in, I could not like get out. And I got in the pool with a life jacket to try to walk and doing I don’t know what this stroke is called where move both arms like that. But only one would work at a time. But I’ve been doing it forever. So it was so strange to be in the pool and not both my arms work together. It was almost like I didn’t expect that that late in my recovery It was not that long but still it was strange to me probably maybe a month after I got out of the hospital so luckily my mom took me to the pool quite a bit and Pushed a wheelchair even though it’s really heavy and she is older so Bill Gasiamis (45:50) Yeah, I went to the pool for the first time during rehab. They asked me if I had anything particular I wanted to work with or a particular exercise I wanted to do. And for me going into the pool, I felt safe that I couldn’t fall over. So we kind of did aqua aerobics and my left side wasn’t working well, but in the pool you couldn’t tell that it wasn’t working well. then put on a, it just felt normal. It felt normal. It kind of. ⁓ appeared like it was working normally, but it felt strange because the water pressure on my affected side, that was different. Feeling the water pressure on my affected side for the first time was really strange. What was cool about it is they gave me a life vest, so there was no chance of falling over, drowning, dying, or anything like that in the water. And it was really a real relief because my body felt really free for the first time. And then as I got better and we started to get out and about, One particular summer we went to a ⁓ waterfall here near where I live. And in the pond at the bottom of the waterfall went for a swing. But the difference is ⁓ fresh water ⁓ is different from salt water. And I had never swum in ⁓ fresh water. Jorden Ryan (47:11) Yeah, there’s a big difference here, right? Bill Gasiamis (47:14) Wow, you’re heavier, you sink quicker. And I went for this very short distance swim and I was completely out of breath and fatigued like really rapidly and needed somebody that was with us to help me get out because I hadn’t realized how much more taxing it would be to do the swimming motions or do all those things and stay afloat. ⁓ And it was really scary because it was the first time I learned that. Jorden Ryan (47:17) Yeah. Bill Gasiamis (47:42) I am not as capable as I used to be ⁓ in the water. Jorden Ryan (47:47) Yeah, I think that brings up a good point for me is that people that try to help me tell me like, be careful. There’s a table there or something like very obvious, right? But they don’t know what I’ve been through and what I can see what I can’t. have to be ⁓ appreciative of them saying that stuff instead of annoyed. Like I usually am so yeah. I did a triathlon in the ocean and it was so much easier. I was pretty happy. I was the other way around. I’m used to swimming in fresh water and then in salmon and salt water and that was all post stroke. But I can know what you mean. There’s a huge difference. Bill Gasiamis (48:27) What’s your Yeah, you’ve done a triathlon post stroke. Jorden Ryan (48:33) No, I’m so sorry. I meant before stroke. ⁓ Yeah, I did one back when I was healthier, but it is hard for me to even raise my arm. I can kind of do it now, but so I just did water aerobics actually today. And I mean, I am the youngest person there probably by seems like 30 years, but in the worst one there, like you can definitely tell I have a stroke. Yeah. Bill Gasiamis (48:59) Yeah, yeah, yeah, yeah. What’s cool about, what’s cool is that now there’s competitions where people can go and compete ⁓ after they’ve been, like the Paralympics is a classic example, right? And all the events leading up to the Paralympics where people can go and compete, get physical, even though they have deficits. That wasn’t something that was possible decades and decades ago. It’s a fairly new thing. I love that even though people are injured and they’ve had difficult times, perhaps their limbs aren’t working correctly. Some people still decide, I know I’m gonna be a competitor still, I’m gonna be with one arm, with one leg, with whatever my, whatever I have left, I’m gonna do the most I can and compete as much as I can to be the best in my particular sport. I love that about the things that people can access today about participation in sport, even though they’re injured. Jorden Ryan (50:02) Yeah, for me, it is much different. Like I used to be a very competitive person and now it’s me against me, right? The me against the stroke or whatever. Like I don’t care that somebody can run really fast. Like, I mean, that’s good for them, but for me getting outside and even getting to the event was difficult. Now to, you know, sit in a tricycle or whatever it happens to be is just, it’s more like a golf or something like that where it’s just you against you, you know, so. It is good that they have that kind of stuff, I think. Like, I’m looking at bikes for mountain biking with three wheels and stuff, so. Bill Gasiamis (50:39) Yeah, I love what you just said you against you. It’s like you against your mindset. Jorden Ryan (50:45) I think it’s just… I don’t want to say me against the world but everything is so… ⁓ difficult I guess? Like everything is a win so if I get in a car to go to the event if I get a bike that I can ride even a tricycle like that’s win if I can finish the event well that’s a win before it was like what place that I get now that’s not important to me I mean sure I guess is this not as important as it was before. Bill Gasiamis (51:15) Yeah, your priorities have shifted. Jorden Ryan (51:18) Yeah, very much so. Like, I think that I have a lot more empathy for people that are disabled. It just clearly opened my eyes. And even though I work in the law, I am used to disability act or whatever. And I was like, these people, now I totally get it. You know, so I understand like why they should have these laws in place. So here in the States, I mean, Bill Gasiamis (51:44) Yeah. Yeah, same with us in Australia. mean, there’s lots of laws to try and protect people who have a disability of some kind, injury, whatever you want to call it, so that there’s less discrimination, so that there’s more services, so there’s more access. ⁓ It’s one of the best conversations that people have because they kind of say, well, we know that this particular service that is going to be provided is going to be provided for all the population and 93 % of the population, for example, it’s not a real number, will be able to access it beautifully. What about the other 7 % who are not gonna be able to access it? We need to think about them. We need to think about how they’re going to go about ⁓ traveling on this service or accessing this service or getting in and out of this particular office or building and all that stuff. is taken into consideration in the design and planning phase now. So you can move around Melbourne, my hometown, in a electric wheelchair or a regular push wheelchair. And you will not have to worry about getting on a train, getting on the public transport, a bus, the tram, ⁓ going down a curb, all the curbs are ⁓ angled down. So this beautiful, nice smooth path towards the road and then up again. Jorden Ryan (53:13) Yeah, that sounds very nice. I think I was just ignorant to people’s needs, I guess. And now I learned firsthand how important they are, right? So I was just like, man, that’s a lot of money to do that. But it makes sense if someone says, well, we have 99 bathrooms, but you can’t use any of them. It doesn’t do me much good, right? So to have this kind of, yeah, right. Bill Gasiamis (53:22) Yeah. Yeah, what’s the point? Finding Light in the Darkest Moments ⁓ Now, the thing about stroke is that unfortunately life doesn’t get put on hold for us to recover from it and then let us get back into life as if we were okay. And I remember going through the third bleed and then a couple of weeks later, literally two weeks later, I think, maybe about a week later, my mother-in-law passed away. And then we had to have her funeral before my brain surgery. and my wife had to deal with all of that, right? You also, you lost one of your friends soon after you got out of, I think it was at rehab. Jorden Ryan (54:19) It was the day I got out of, ⁓ like inside the hospital rehab, inpatient rehab, like he was a good friend and he also had, I think a something to do with he had a tumor on his spine or something that was removed, but it left him slightly paralyzed. Like he was, he had both arms and I remember being in the hospital being jealous of him because Such a little thing like, wow, this guy can go to the bathroom by himself. I wish I could do that, right? But unfortunately, yeah, he died by suicide the day that I got out. It was devastating and very hard. I mean, that was somebody I planned on spending a lot of time with because he lived in the same city that my sister took me in that I was going to hang out with. I mean, not just about me. It was just sad that that happened, obviously. Bill Gasiamis (55:14) Yeah, of course, man, that’s pretty sad. And also, then your dog passed away. Jorden Ryan (55:22) Yeah, so this guy, he had told me my last message with him, well almost last was, we didn’t ask for this, but we’re gonna get through it together. And then, you know, he took his life, so that made me seem like, what should I do now? Then my dog died, which was a big deal to me because, okay, now I have all this time to pet him or play or whatever, and you know, it was pretty dramatic. dick dab that, but I felt like I was in a country song. Bill Gasiamis (55:55) How did you get past it? Jorden Ryan (55:56) I don’t know, think that you you kind of learn to just roll with the punches as I say because there’s so much in life that I can’t control that I mean, just, stuff happens right? You just have to do your best and I try to tell people like, it’s very easy to be in darkness or the negativity but it is my job to open up the light, open the window or whatever, not literally the window but to see all the good things that are happening. around me. So I mean, there are so many amazing things. So I have to open that up and not stay in the darkness too long. I can’t stop from happening personally, like this part of my life, but I can get out of it. Like luckily I have those tools, so to speak. Like I can be like, okay, this is happening. This is amazing. Or my family is healthy or whatever it happens to be or just people being really nice, seeing that, right? But I did have, my hand was like clawed and I would open the door and some people were nice and be like, let me get that door for you. Well, I cannot open my hand to let go of the door. It would almost knock me over several times. So kind of funny. Bill Gasiamis (57:13) always funny opportunities like to things to laugh at in that moment. I remember being wheeled in my wheelchair when I first got out of hospital, out of the hospital ward and we were just going around the hospital grounds just to get some sun. My wife was pushing me and I couldn’t feel my left leg and it fell off the, you know, where the feet sit in the wheelchair, the footrest. It just fell off the footrest and it was getting dragged. beneath the footrest and kind of the wheel of the wheelchair and it was kind of getting dragged and I couldn’t feel it had no idea but my wife was struggling to push the wheelchair Jorden Ryan (57:54) She’s like, is wrong with this? It’s so hard. Bill Gasiamis (57:57) She was going, well, this so hard to push. And then we had to have a look around and realize the reason it was hard to push, because my foot is under the wheelchair and I have no idea that it’s there and it’s getting stuck. ⁓ We laughed about it because what else are you gonna do at that moment? It was pretty ridiculous and funny at the same time. Jorden Ryan (58:16) That is exactly right. I would say that if I had to give credit to one thing, it would probably be my odd sense of humor now, right? Like there’s so many things to laugh at that it’s hard to say, Matt. That situation you had, it could have been really devastating to you or whatever, or you can be like, that is pretty funny, right? So I had something similar happen to me. My foot came off the wheelchair, but it just stopped. I didn’t feel it. my leg, but I mean, it felt like I ran over a rock or something like, so similar, not the same, but similar to me. Like, didn’t know if my leg would ever come back, you know? So people are all different levels of their journey. Like I was not upset, but I was surprised to see people in patient rehab. They could walk so well. like, Hey, we are really struggling over here. We’re in a wheelchair. That’s not the right attitude to have, but that’s how it was, you know, Bill Gasiamis (59:12) Yeah, absolutely. Jorden Ryan (59:14) are fine, get out of here, let us sick people alone, leave us here, so. I mean, I am lucky in the fact that I’m getting a lot more back than I thought that I would, so everything from now on is icing on the cake, so to speak. Living with PTSD and Double Vision After Stroke Bill Gasiamis (59:28) Bonus for sure. I think you talked about PTSD around brushing your teeth, right? How does that show up in your daily life? Do you have moments when that kind of rears its ugly head? Jorden Ryan (59:42) Well, I just moved into a new house and the bathroom is right next to it and it’s not so bad now. But when I had to walk and it was more difficult and I had PTSD and self-diagnosed. So I don’t even know if it’s a real thing. It was very scary, right? Like it would almost like giv
Hemorrhagic Stroke Patients Recovery: Jonathan's Journey Through Chaos and Renewal When the clock struck midnight on January 1st, 2021, most people were celebrating a fresh start. Jonathan, at just 35 years old, was unknowingly entering the most challenging chapter of his life. His speech had begun to slur, his head pulsed with pain he couldn't explain, and within hours he was rushed to the hospital during the height of COVID restrictions. That moment was the dividing line between the life he once knew and the life he would rebuild from the ground up. This is a story about what hemorrhagic stroke patients recovery really looks like, the kind that forces you to confront who you used to be and decide who you're going to become next. Before the Stroke — A Life Built on Momentum Before everything changed, Jonathan was thriving. He worked in food science — a field he loved, filled with global imports, inspections, and ensuring food safety for the public. He enjoyed hiking, biking, dinners with friends, and a vibrant social life in the city. He'd finally built independence, moved into his own space, and was exploring a new relationship. His life had rhythm, structure, forward motion. But as many survivors later recognize, stroke doesn't appear at a convenient time. It arrives abruptly, often when everything seems stable. And for people seeking to understand hemorrhagic stroke patients recovery, this contrast before and after becomes a core part of the journey. When the Body Sends Signals In the days before the stroke, something felt off. Jonathan experienced intense migraines, stronger and stranger than anything he'd felt before. But like so many young survivors, he didn't recognize them as warning signs. Then, on New Year’s Eve, his speech began to fall apart. Words wouldn't line up. Sounds emerged out of order. His girlfriend noticed instantly: something was horribly wrong. In minutes, Jonathan went from preparing to welcome the new year to being rushed through hospital doors under strict pandemic protocols. He had no idea this day would reshape him forever. Early symptoms often become the first chapter of hemorrhagic stroke patients recovery, because they reveal how quickly life can break open. The Diagnosis No One Expects at 35 Doctors discovered an AVM — an arteriovenous malformation on the left side of Jonathan's brain. It had ruptured, causing a hemorrhagic stroke. The bleed had stopped on its own and even drained naturally, something his neurologists called miraculous. Still, the damage was significant: His speech was severely impaired His mobility weakened His memory disrupted His emotional world destabilised He heard the words “hemorrhagic stroke” and “AVM rupture,” but they didn't make sense at the time. Many survivors describe this moment as surreal, as if the diagnosis is happening to someone else. “When your own words disappear, your whole identity feels like it's gone with them.” Recovery in Isolation — A Stroke During COVID After only seven days in the hospital, Jonathan was sent home in a wheelchair. There were no open rehabilitation centres, no inpatient programs, and no in-person speech therapy available. Therapists arrived at his family home wearing full PPE, “like a movie scene.” Everything felt unreal. Occupational therapy Physiotherapy Cognitive rehabilitation Speech therapy (virtual for an entire year) Social work support Nutrition guidance All delivered at home, all while the world was shut down. This is the reality for many navigating hemorrhagic stroke patients recovery during unpredictable times: healing becomes a collaboration between professionals, family, and faith. Losing Everything — And Feeling All of It The physical deficits were challenging, but the emotional costs cut deepest. Jonathan lost: His job His independence His ability to drive His long-term relationship His financial stability His sense of identity Anger, sadness, frustration, and confusion were constant companions. These emotional injuries rarely show up on scans, but they shape recovery just as strongly as the physical ones. And like many survivors, he wondered: Who am I now? Will I ever get myself back? This is where recovery becomes something deeper than rehab. It becomes a reorientation of the self. The Turning Point — Gratitude and Mindset Shift One of the most powerful moments in Jonathan's story came when he realized he could walk again. And speak again. And see his family. And simply breathe. He realized: I am still here. I have another chance. Gratitude is rarely the first emotion during a stroke recovery. But eventually, it becomes one of the most transformative. Mindset is one of the greatest predictors of hemorrhagic stroke patients recovery, not because positivity fixes everything, but because a resilient mindset helps survivors keep trying even when the path is uncertain. I've been there myself. When I experienced my strokes, I knew instantly that certain habits and patterns in my life had to change. Not because anyone told me to, but because something inside me shifted. You begin to recognize what no longer serves you. And you begin to aim your life differently. Faith, Identity, and Rebuilding From the Inside Out For Jonathan, faith became a compass. He studied scripture. He leaned into prayer. He found community in his church and mentorship in his pastor. Whether someone practices religion or not, the principle is universal: Recovery requires trust — in yourself, in the process, in the possibility of your future. Faith, in its many forms, becomes a stabilizing force in chaos. From Survivor to Guide — Serving Others Through His Pain As Jonathan regained strength, he realized he wanted to give back. He became a volunteer with: March of Dimes Canada Heart & Stroke Canada He now supports survivors aged 20–80 in both English and Spanish, one of the most unique and powerful aspects of his journey. The moment a survivor steps into service, their recovery deepens. Helping others expands meaning, connection, and purpose. I saw this in my own journey when I became a stroke advocate and launched this podcast. Jonathan discovered a simple truth: Helping others helps you heal too. Visit: recoveryafterstroke.com/book patreon.com/recoveryafterstroke Building a New Life — Marriage, Mentorship, and Hope In 2024, against all expectations, Jonathan got married. He started his own mentorship initiative for survivors, still volunteers across Canada, and continues to rebuild his life with clarity and gratitude. His story is less about “getting back to normal” and more about discovering a new, purposeful version of himself. What Jonathan Teaches Us About Hemorrhagic Stroke Patients Recovery Recovery is not linear. Identity gets rebuilt, not restored. You don't need to do this alone. Emotional healing is just as real as physical healing. Gratitude can shift your entire experience. Community accelerates recovery. Most importantly, your life didn't end with your stroke — a new one began. A Young Man's Fight Back: Jonathan's Hemorrhagic Stroke Story A young survivor's journey shows what hemorrhagic stroke patients recovery can look like — courage, faith, and rebuilding life step by step. Instagram Youtube Facebook TikTok Website Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction to Jonathan’s Journey 01:31 Life Before the Stroke 05:41 The Day of the Stroke 14:02 Hemorrhagic Stroke Patients Recovery 23:05 Emotional Challenges Post-Stroke 31:38 Overcoming Bad Habits and Health Challenges 37:38 Finding Purpose Through Volunteering 45:31 The Role of Faith in Recovery 55:32 Understanding Suffering and Connection to God 01:01:01 Building Community and Fellowship 01:05:31 Future Goals and New Beginnings Transcript: Introduction to Jonathan’s Journey Bill Gasiamis (00:00) Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jonathan, a young stroke survivor whose life changed in a moment he never expected. And what makes this conversation so powerful isn’t just what happened to him, but how he tried to make sense of it, rebuild from it, and eventually find direction again. I won’t give away the details. That’s Jonathan’s story to tell. But I will say this. If you’ve ever struggled with the fear, uncertainty, or emotional weight that comes after a stroke, You may hear something in this journey that feels uncomfortably familiar and surprisingly reassuring. Now, before we get into it, I want to mention something quickly. Everything you hear, the interviews, the hosting, the editing, exists because listeners like you keep this going. When you visit patreon.com/recoveryafterstroke, you’re supporting my goal of recording a thousand episodes so no stroke survivor ever has to feel like they’re navigating this alone. And if you’re looking for something you can lean on, throughout your recovery or while supporting someone you love, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book. It’s the resource I wish I had had when I was trying to find my way. All right, let’s dive into my conversation with Jonathan now. Jonathan Arevalo, welcome to the podcast. Jonathan Arevalo (01:23) Yes, hi there Bill. Bill Gasiamis (01:26) Jonathan, tell me a little bit about what life was like before the stroke. Life Before the Stroke Jonathan Arevalo (01:31) Well, life before stroke at 35 years old was good. It was really good. I had the opportunity to travel a lot and also I worked for a company related in foods. And it was something that I had a passion for since I studied that in university when it came to studying chemistry. biology and also food sciences. And during that time is what led prior to my stroke, which was in January 1st, 2021. Bill Gasiamis (02:14) So you did, ⁓ you worked in food sciences. What kind of work did that involve? What does a food scientist do? Jonathan Arevalo (02:24) So for that type of job, worked as ⁓ specifically, it was QA coordinator, which I was in charge of all food products that come from all over the world into Canada, where I had to do audit checks, inspections, and make sure that every single fruits and vegetables had to meet the requirements, which are government requirements, and also meeting specifications. for the safety, the safety before it goes out to the public. Bill Gasiamis (02:57) Wow. Was that a government job? Jonathan Arevalo (03:00) It was not a government job. It was more of a food company that is known all over North America. Bill Gasiamis (03:11) So just a very popular food importer for example that brings different products in and you’ve got to check them and inspect them So what do you do you opening boxes and looking literally at the food before? ⁓ gets the tick Jonathan Arevalo (03:26) Yes. So before anything gets accepted, ⁓ I receive C of As, which are certificate of analysis that come from different countries. And I need to go through all of those to make sure it meets government regulations and at the same time for the health and safety. So all of that, ⁓ I had to make sure both reading it and as well physically inspecting myself. Yeah. Bill Gasiamis (04:01) I understood. What about home life? What was that like? How were you? Where were you living? Who were you living with? Jonathan Arevalo (04:08) Yes. So when it came to that, I was living in the city and I was living with ⁓ an ex-girlfriend who I was during that time. And what it was, it was a different change in life where I started to adjust a new relationship. And at the same time, I was adjusting in building my independence outside from home. and starting like my own life differently. But everything went well until things started to change when it came to relationships and also work and also other things that came along with it over time. Bill Gasiamis (04:58) What did you do for downtime? Do you have some hobbies or are there some things that you enjoy doing after work or on the weekend? Jonathan Arevalo (05:07) Yes, yes. Usually, ⁓ would mostly hang out with friends, go out to meet up with friends to different places. We’d go out for dinner, out in the city. And also, I was very active, so we would go to different trails to do hiking. ⁓ Or also biking, like riding the bike and all that. So different activities like that to stay active. The Day of the Stroke Bill Gasiamis (05:41) Do you remember the day of the stroke? did you start noticing something going wrong? What happened on that particular day? What was different about that day? Jonathan Arevalo (05:52) Yes, well leading to the stroke, was more during Christmas time. So in ⁓ this exact same time in December, where it was leading to my stroke that I started to get certain signs of, I wasn’t too sure what it was though, because I was getting some headaches and something very intense that I never had before, which are migraines. And that was leading prior to the stroke and starting the new year. so then pretty much like on the 31st, leading to January the 1st, was the moment that I had my stroke. And then my ex-girlfriend who I was with during that time, which is already almost five years, ⁓ she noticed that my speech was, was, was going off. I had a lot of slurs in my words. I was getting like very intense headaches and it just didn’t seem normal. So she started to question and ask me questions that didn’t, didn’t make sense. So she automatically ended up calling emergency and I got rushed, ⁓ through emergency to, the hospital. starting the new year. Bill Gasiamis (07:22) Well, so first of January 2021, was it? Jonathan Arevalo (07:27) Yes, January 1st, 2021. Correct. Bill Gasiamis (07:30) Wow, man. First day of the new year, straight into hospital. Jonathan Arevalo (07:34) straight to the hospital, but not only straight to the hospital, but it was also during the time of COVID. And so that made it even more complicated because in the hospital, there was different cases going on at the same time. And whether it’s doctors, nurses, or different people entering and going out, ⁓ there was Bill Gasiamis (07:42) Uh-huh. Jonathan Arevalo (08:04) a lot of restrictions that was going on that certain people weren’t allowed to go in unless it was an emergency purposes. And also I had to wear a mask and all that because they weren’t sure whether I had COVID or it was something else. Bill Gasiamis (08:26) So do you, is this a story that you remember or somebody has told you about what happened that day? Because sometimes people hear the story from others, but they don’t remember going through it or what they were thinking or what they were feeling. What were you thinking or feeling during this whole thing with the strange migraine and then being taken to the hospital? Jonathan Arevalo (08:49) Yeah, for me, I slightly remember since I had ⁓ very, very like, like vague ⁓ scenarios that I was ⁓ that I still remember. But there’s other occasions that I don’t remember anymore. Like I lost a lot of that memory during that period of time because it happened so quickly that that it was also a first time experiencing having a stroke. But I do remember like certain scenarios of being picked up from paramedics and then being rushed to the hospital. And then from there, not that much what happened afterwards, are certain things that I’ve forgotten or it’s hard to remember. Bill Gasiamis (09:46) Yeah, so you’re in the hospital. Do you understand when they tell you that we’ve discovered that you’ve had a hemorrhagic stroke? Like, are you aware of that? Or is it just noise? What’s it like to be told that you ever had a bleed on the brain? Jonathan Arevalo (10:04) Yeah, I find it that it’s very hard to understand that because I didn’t know what a stroke was in that time. And not only a stroke in general, but also the type of stroke that I had, which was a hemorrhagic stroke. But not only was it hemorrhagic stroke, it was as like the couple of days passed by, I was also transferred to another hospital since the hospital where I was at, didn’t have the adequate ⁓ neurologist and specialist for stroke. So I believe it was on the third day or something like that. I was taken to another hospital where they do have specialists, neurologists and all that related to stroke. So they took my case because it was something very important. And at the same time, they didn’t understand how I survived it as well because it wasn’t just a stroke on the left side of my brain. They found that it was an AVM. So it’s called anterior venous malformation, which could be caused from childbirth. As you get older, it could start to develop where you really don’t know because it’s internal. So what triggered it was an aneurysm that made it rupture. Bill Gasiamis (11:43) We’ll be back to Jonathan’s story in just a moment. wanna pause for a second and ask you something important. Why do you listen to this podcast? For many people, it’s because they finally hear someone who understands what they’re going through or because they learn something that helps them feel less alone in their recovery. And here’s the part most listeners never think about. This show only stays alive because of people like you help it keep it going. There’s no big company funding it, no medical organization covering the costs. It’s just me, a fellow survivor doing everything I can to make sure these episodes exist for the next person who wakes up after a stroke and has no idea what happens next. When you support the podcast, you’re making sure these conversations stay online. You’re helping cover hosting and production fees, and you’re making it possible for new survivors months or even years from now to find hope when they need it most. Hemorrhagic Stroke Patients Recovery Some people think my support won’t make a difference, but that’s a misunderstanding. Every single contribution is what keeps this podcast available for free to the people who need it most. And if you want to go even deeper on your recovery, you can also grab a copy of my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Yeah, I know all about arteriovenous malformations. That’s why I’m… talking to you on this podcast because I had one of those in my head on the right side, near the cerebellum and it bled for the first time in November, in February 2012 was the first time my one bled. ⁓ But ⁓ I had numbness on my left side, the entire left side for a whole week before I went to the hospital. And then when they scanned my head, they said, we found a… a shadow on your brain. The shadow on my brain is the white part on the brain scan on the MRI that reveals the bleed and the bleed. The bleed was caused by this blood vessel, faulty blood vessel that they called an AVM that burst and then created a lot of trouble, right? And then the whole journey begins and then it’s just, you know, starting out. So, with mine, eventually they removed it from my head with brain surgery. How did they rectify the bleed in your brain? What did they do to stop it bleeding? Jonathan Arevalo (14:15) Well, it didn’t, it stopped on its own actually. ⁓ Bill Gasiamis (14:19) Sometimes they do that. I was told that sometimes they stop on their own and they don’t have to take any further action. But with mine, it bled another two times and they had to have brain surgery. But with yours, luckily, it stopped bleeding on its own. Jonathan Arevalo (14:34) Yes, Bill. So in reality, it was a miracle. It was a miracle behind it because it stopped the bleeding, but it also drained the bleeding that was inside. So it was like a drainage on its own. And that’s the miracle itself. And the doctors had a team of 10 in the hospital trying to monitor me. and see exactly how did it happen and at a young age and someone that’s healthy and doesn’t have a history of being in the hospital or anything such as that. So that was the miracle itself. So the neurologist ended up ⁓ with their team. They ended up having, I had an angiogram. And the angiogram was done through the side of the groin that goes up to your head, which they tried to ⁓ detect exactly the AVM. And that’s how they were able to find only one specific one that ruptured. Bill Gasiamis (15:53) Yeah, I had the same procedure through the groin and ⁓ they put the the contrast into the brain and then they take photos of that and it shows exactly where it’s bleeding. And that’s an interesting experience because you’re awake the whole time and they go past your heart and they go up into through your neck and then they go into your brain. Jonathan Arevalo (16:11) Yes. Yes, it is. was like an experience that it’s hard to explain, but I felt like electricity in my body. And I don’t know why I felt electricity in my body, but I felt like shocks in my brain or like fireworks. And I was thinking, what’s happening? Bill Gasiamis (16:19) Pretty crazy. Fireworks. Jonathan Arevalo (16:47) But the hardest part, Bill, was the fact that I had lot of difficulties in speaking. So words wouldn’t come out. For me, was like I tried to explain myself through, I don’t know how to say it, emotion. So like facial, facial expression, kind of like when you feel in pain or something like that, or you’re trying to say things. So I had a lot of difficulty for that period of time. And also, since it happened on the left side of my brain, on the opposite side from arm to leg, I had ⁓ difficulty with my mobility. And also with my memory, my memory was affected. ⁓ about a percentage amount. it was very hard ⁓ my first year. It was very difficult. Bill Gasiamis (17:59) I was 37 when I had mine and you were 35. Jonathan Arevalo (18:04) 35. Bill Gasiamis (18:07) Yeah, very young, very young age and then a lot of challenges. So who was supporting you when you were at hospital? Was it your girlfriend at the time and other family members or nobody able to come because of the lockdowns? Jonathan Arevalo (18:21) Yes. So because of the lockdowns and all that, the only person that I had the permission ⁓ for that support was my sister, my older sister. So she ⁓ would be the only one that just by phone, so not in person, because ⁓ my family lived two hours away from the city. And since they live very far away, ⁓ ⁓ My sister was the only one that had communication with the doctors, with the nurses and any specialist when it came to my case. Bill Gasiamis (19:02) Wow. After surgery, after you woke up from hospital, the first seven days, you said the better week you’re in ⁓ that situation. Jonathan Arevalo (19:17) Yes, for a week. ⁓ so they ended up not doing anything. I’m not too sure why. And they let me go home. Bill Gasiamis (19:29) Wow, so they had drained the blood already out of your head and then just sent you home Jonathan Arevalo (19:35) They sent me home on a wheelchair. So what happened was that I ended up getting picked up by my sister and I didn’t go back to where I was currently living in the city. Instead, I went back to the countryside with my parents who ended up becoming my caregivers. Bill Gasiamis (19:59) So you had a, they sent you home in a wheelchair. Did that mean you couldn’t walk when you were sent home? Jonathan Arevalo (20:08) I could walk a bit, but not too well. Bill Gasiamis (20:12) So there was no rehabilitation option, you didn’t get rehabilitated, they didn’t give you occupational therapy or anything? Jonathan Arevalo (20:19) They did that at home as well. Because of COVID, I ended up receiving rehabilitation at home. ⁓ When it came to walking, speaking, understanding, cognitive, and social worker, and nutritionist, all of those types of therapists, ⁓ they had to dress up in a suit as if… As if they’re going to see someone who’s with a virus or something. So it was like watching a movie. Bill Gasiamis (20:55) Wow Yeah, pretty crazy times. So you did get rehabilitation. They did ⁓ support you with therapy for speech and all that kind of stuff. ⁓ How long did all of those therapies last? Was it? Jonathan Arevalo (21:16) Yes, that lasted for seven months. Bill Gasiamis (21:20) Wow man, all at home. Jonathan Arevalo (21:23) all at home, ⁓ in person, and also virtually the way we’re doing right now. Bill Gasiamis (21:29) Yeah, was it virtually for speech therapy? Jonathan Arevalo (21:34) Yes, virtually it lasted longer than seven months for speech therapy. It lasted a year. Bill Gasiamis (21:40) Wow, Yeah, that that’s kind of cool that even though they were going through a really difficult time in Canada, with lockdowns with all the stuff that ⁓ happened because of COVID that you still got access to all of the necessary tools to help you overcome what it was that you went home with. Jonathan Arevalo (22:02) Yes, yes, I’m very thankful. I’m very thankful that I received the support that I needed and also the support of my caregivers, my parents and my older sister, because mainly my older sister was the one that was on top of everything. So that way I may receive everything the moment that I got released from the hospital. she ended up getting everything that I needed, so that way I get that support automatically right away, over the time, yeah. Bill Gasiamis (22:40) Wow, that’s excellent. So, however, now you’re living in different circumstances under lockdown, very difficult to access all these things, like things are seriously have gone wrong for you, know, quote unquote, in your health journey, okay? What is it like dealing with the emotional side of that? Emotional Challenges Post-Stroke Jonathan Arevalo (23:05) Very difficult. I was very angry. I was very frustrated. I was very upset. I was confused. Those are the different emotions that I felt. And I believe that many other stroke survivors would feel the same way. Because I find it that whenever something has been taken away from you, then it hurts a lot. And it hurts you a lot because it’s kind of like not being yourself anymore. So you have something that’s been taken away from you. And so I did lose quite a lot. I lost my job. I lost the ability to drive. So I had to sell my car. And I also ⁓ lost that relationship that I was in. that relationship ended. And I also wasn’t earning any money as well. So the only caregivers were my parents. had to live with them again. And for the past four years of recovery, which I’m still in that recovery stage of stroke, but I’ve improved a lot though. I’ve improved a lot and which I’m very, very thankful. And that just goes based on just having faith. And that’s where I started to change my life. I started to change my life the moment I started to change my mindset, the way I think. And because the moment I started to change the way I think, it was the moment that I was just much more grateful for even though I lost everything. I was simply grateful to be alive. And that was much, much more meaningful than everything that I had. Bill Gasiamis (25:08) than being grateful for a car, for example. Jonathan Arevalo (25:11) Being much grateful for having the second opportunity to live when possibly I wouldn’t be here telling my story. Bill Gasiamis (25:20) Yeah, I totally get that. I went through a similar experience, know, gratitude. Even if you’re not able to come up with something that’s as meaningful as I’m grateful to be alive, like maybe you’re grateful because, I don’t know, there’s a roof over your head or, I don’t know, somebody said something nice to you or whatever. Like you can be grateful about many things, but- being grateful to be alive. Well, that was an easy one for me as well. I totally get it. That’s what I went through. And I had another opportunity to make things right, to support ⁓ myself in a different way, to think in a different way, have it, to try different things and experience things that I’d never experienced before. What, what was the thing that kind of made you feel grateful to be alive? I know that Do you know what I mean? There’s a layer beneath that. is, I’m alive, okay, but what does that mean that you’re grateful to be alive? I get it, but there’s more to that. Jonathan Arevalo (26:33) Yes, of course. Yes. I’m grateful for being alive because I have a second opportunity to change my life to something even better when it comes to helping others, when it comes to being a difference from our old self. Sometimes we don’t get a second opportunity to reflect, but I had… four years, and it’s going to be almost five years, of the opportunity to reflect, of being thankful for, as you said, a place to live, for having my parents, for having my sister, and for having other loved ones that were there praying for me so that way I may live and not die. And at the same time, ⁓ Just being able to walk, to see, to speak, to understand. I was able to regain all of that that was lost. those were the reasons why I was grateful for. Bill Gasiamis (27:48) Yeah, your, ⁓ so your mindset and who you were and how you acted and how you behaved. Like, are you a very different person than the person beforehand? Like, what were the issues with your mindset? What were the issues with the way that you turned up in the world that you needed to tweak to be a better version of yourself back then? Now, I say that because many stroke survivors will say, I want to go back to how things were before stroke. And I’m like, I didn’t want to do that. Like, that’s not a good place to go. You’re smiling. So I’m imagining that you think a similar way. Jonathan Arevalo (28:30) Yes, agree with you, Bill. I find it that sometimes we don’t change our old habits, let’s say. Sometimes we carry habits or cycles in our life that we think it’s good, but in reality, it’s not something good that actually ⁓ represents us. or does good for others or even for ourselves. So myself, I can say that I had everything that I wanted and I had the opportunity to do pretty much everything that I wanted. But at the same time, I wasn’t completely happy. And at the same time, we carry certain bad habits because we think according to society, where society will will accept you based on the things and the patterns that you follow society. When it comes to doing certain bad habits that you think that’s good, but in reality, it’s not really good because you’re actually hurting and damaging who? Yourself. Which is something internally, both mentally, physically, and emotionally. But over time, When you start to reflect on your old habits that weren’t completely fulfilling or bringing that happiness or that peace or that joy, then in reality, it’s nothing good. It’s only for the moment. And sometimes we keep on rushing and doing things for the moment to get that pleasure. But that pleasure only lasts for a moment. So I had to change. And this recovery over these almost five years was a recovery not to just change myself, but to change the way I think, the way I speak and the way I act, because it’s a full connection. And that full connection is the reason why now what I’m currently doing is helping other people, other stroke survivors and other people with disability and also mental health, because we find it that each day The world is getting worse, not better, but worse. Why? Because we live in a broken world. And the fact that we live in a broken world is a reason why there’s many, many men and women that are looking for pleasure, but for the moment. And that’s something that I had to learn for myself the hard way. Even though I wasn’t in drugs, even though I wasn’t an alcoholic, even though I wasn’t doing harm to people, but I would still have bad vices or certain things that still didn’t make me happy. So that’s the main reason why. Overcoming Bad Habits and Health Challenges Bill Gasiamis (31:38) Yeah, it’s exactly my experience as well. Like I had some bad vices that were not ideal. They seemed minor, but the behavior, the habit behind it was not minor. It was major because it was there for many, many years. And if it continued to go on, wouldn’t be helping in a positive way. It wouldn’t be achieving a positive outcome. will be achieving something that my head thought was a good idea at the time, but not really something that is meaningful, purposeful, useful in life. Smoking was one of those things I used to smoke. And people, often I had a friend of mine who would say that that thing will kill you if you keep doing it. And I was like, yeah, don’t worry about it. That’s a problem for Bill in the future. It’s not a problem for Bill today. However, Bill of the future had a bloody brain and… a brain AVM bleed in his head. that became a 37. Really, that became a problem for Bill. Now. And I was smoking from about the age of 13, something like that, on and off. And my friend was telling me that from probably the age of 17, 18, 19, 20, 21. It didn’t take a lot of years to get to 37 and then be experiencing you know, negative impact of a health situation. And I realized that I’ve got to make some massive changes. And obviously, to me at least, it was the most obvious thing that I have to give up smoking. Also alcohol, even though I wasn’t an alcoholic, I had to stop drinking alcohol. And now I very, very rarely drink alcohol. Even 13, 14 years past the first bleed, I very rarely have an alcoholic drink. ⁓ So it’s amazing what came to my mind. I immediately knew the things that I had to change. No one had to tell me, ⁓ well, since you’re ⁓ having a stroke, since you can’t walk properly yet, since your left arm doesn’t work correctly, why don’t you think about fixing this, changing that, doing this, doing that? No one had to tell me. Inside of me, instinctively, I knew what I was doing that was not supporting me, was not supporting my mission in life and my goal in life. And it was the easiest thing to change. ⁓ I did receive some help though. I didn’t do it alone, right? So I had a counselor, I had a coach, a life coach. ⁓ I sought out the wisdom of people that were older than me, smarter than me, know, been on the planet longer than me whatever. And I did it together with other people, not just on my own, because change is not very easy, especially when you remove an old habit and then you have to replace it with something. Initially, replacing it with something feels a bit strange and you don’t know if it’s the right thing that you’ve replaced it with and how that’s going to look like in six months or 12 months. So that’s what I found was that in order to help me find the right things to replace the things that needed to be left behind. I needed to seek the support of other people, counselors, coaches, et cetera. Did you have some support in that part of your recovery so that you can kind of make sense of all the changes that were happening in your body, in your emotions and in your life? Jonathan Arevalo (35:15) Yes. So I ended up joining a nonprofit organization here in Canada called March of Dimes. And March of Dimes provides support for stroke survivors, people with disability, and they have peer support. And it’s a form of counseling with other stroke survivors. And they do this within all of Canada. And also through Heart and Stroke as well, which is another nonprofit organization, Heart and Stroke. So both of them, would do this virtually where I would seek support to talk to someone based on what I’m going through, my thoughts, my emotions, and also telling my story. And from that moment, I said to myself, I want to do the same. I want to give back to the community and to other survivors. So I ended up becoming a volunteer. And for the past three years, I’ve been a volunteer at ⁓ March of Dimes and also Heart and Stroke, where I ended up becoming an advocate. for both nonprofit organizations. And you can also see me on their website on both of them where it tells my story, but also the fact that I volunteer helping out people from the ages of 20 to the ages of 80 years old in two languages now. So I do it in English and Spanish. And it feels really, really good. It really does. Bill Gasiamis (37:09) Yeah, we have very similar stories and journeys. So I went and connected with the Stroke Foundation here in Australia and then provided became an advocate so that we can raise awareness about stroke and then started doing some speaking on their behalf at different organizations. And and like you said, like it gives you a lot of purpose and meaning. It makes what happened to you worthwhile. You know, it’s a very important part of, well, why did this happen to me? I don’t know. You could come up with a lot of negative reasons why something bad happened to you, but what am I going to do about this? And how can I transform this in a way that can help other people? Well, that is a better question to ask. And then volunteering is the best way to do that. I volunteered probably from 2013 through to about 2019. Finding Purpose Through Volunteering For about six years I volunteered. And at the same time I was running the podcast, I started the podcast in 2015. ⁓ And it was just ⁓ meeting other people who had understood me as well in those communities. That was fantastic. Being able to connect with people like that and feeling like, you know, this person really understands what happened to me because it happened to them in a different way, but they have a similar kind of recovery. And… we are aligned in our mission to support others and make a difference and not to make it just about us because that’s a really difficult thing to ⁓ do is you you become anxious and depressed when you just make it about yourself so making it about other people’s stops that thinking pattern ⁓ and I just love the journey that you’re on because you’re very early on in the journey and I can see it’s going to continue ⁓ to be that kind of meaning making journey. I found that I said that I discovered my purpose after the stroke. Now you would have thought that somebody who was married had two children, had plenty of purpose in their life, plenty of meaning. Why do I exist for my children? To support them, to teach them, to make them great men, to ⁓ give them the opportunities in the world, in the community, except They move out of home eventually, and then they become independent. And then your purpose and meaning has to shift. It cannot just be about them. You can include them in your purpose and meaning because you love them, they’re your children, et cetera, in my case. But, you know, they don’t need me now to be the guy that shows them the way of the world and… educate them and prepare them and all that kind of stuff. They are doing it on their own. When they do need me, they come for five minutes or 10 minutes. We have a conversation and they’re done. So it’s important to shift that energy that I had as a parent to other people who need support in the early days of their experience when they have a negative health experience so that we can help guide them through that adversity and overcome and then maybe grow and be a better version of themselves in a few years down the track. Jonathan Arevalo (40:41) Yes, I think that it’s important to be a good example, a good leader, whether it’s at home or everywhere we go. We always need to be a good testimony. And the way I’ve learned that is also through my dad, which he taught me at a young age to be to be a man of righteousness, where he shows a good example through his good actions, but not only through words, but through actions, right? Because sometimes we may speak and say a lot of things, but we don’t live it. But when you live it, it makes a huge difference. And whenever we show those examples, whether it’s… to anyone, any family members, strangers, or anything like that. We need to be like that everywhere we go. And that’s something that I’ve learned a lot, that we need to be a good example to anyone. Bill Gasiamis (41:47) Yeah, I imagine that in the last five years you would have had some setbacks as well. What was the hardest challenge to overcome, do you think, for you? Was it physically or was it emotionally? Jonathan Arevalo (41:59) ⁓ I think it was more emotionally than physically. But it’s something that I was able to work on because even myself, ended up seeking support. And not only through these nonprofit organizations, but also within the church. So I ended up going to church and I had one of the pastors being my mentor ⁓ for a year and a half, and he ended up helping me out a lot. And it was a big amount of support that I received also from my dad and my mom and my sister. So I always had ⁓ a close family support. Yeah. Bill Gasiamis (42:54) Yeah, the church is very common in people’s recovery. You hear a lot about people reconnecting with their church or even if they were still connected with their church, getting supported and having people turn up, ⁓ provide food, provide counseling, provide encouragement, all sorts of things. ⁓ And it sounds like it’s a fantastic community. And then you also hear from people who had ⁓ non-church type of. communities who come forward, support them and give them ⁓ the things that they need to kind of get them settled and in some kind of routine where they can continue recovery in their own way. ⁓ But there would have also been hard times, right? Where, because most people, and on my podcast, we talk about all the amazing things that stroke survivors do and they overcome, et cetera, but there’s also a… really, really hard times. I went through what I would call rock bottom moments, found myself in the abyss. Did you find yourself there at all? Had you experienced kind of that really down negative part of stroke ⁓ in your mental state and your emotional state as well? Jonathan Arevalo (44:09) Yes, ⁓ within the first year. So the first year was everything like I mentioned earlier about feeling angry, frustrated, ⁓ sad and all that. The first year was the hardest part of ⁓ just not knowing what to do. And the only support was ⁓ through my parents that helped me a lot to kind of take away those negative thoughts. And also getting into the church where I had support with the pastor. And then myself just changing my mindset where I had to start looking more into, more to God because I find it that without God we’re nothing. And based on my faith, that’s what gave me the strength, the encouragement, and the joy that was taken away the moment I had my stroke. So my faith in God was what gave me the strength and gave me the encouragement to move on forward. The Role of Faith in Recovery Bill Gasiamis (45:31) Let’s talk about faith for a moment because people may not believe in God. Some people may not believe in God, a God, their God, whatever. faith on its own as a experience is something that we, if we practice, ⁓ is really supportive of recovery. So faith in ourselves, faith in the medical system, faith in any situation where We have to put our kind of our life in the hands of other people. That’s what we’re practicing for people who don’t have faith in God or who don’t have a God or don’t believe in God. You still have to practice faith and you practice faith every single day. ⁓ I wanna go and receive one of my medications. You have to have faith in the medication that is going to work for you and it’s going to actually do the job. that it’s meant to do. Keep your blood pressure down, for example. I’m on blood pressure medication. ⁓ When I drive my car, I have to have faith that the other person is gonna stay on their side of the road and they’re not gonna come on my side of the road. And you know, 99.999 times out of 100, that’s exactly what happens. know, ⁓ when I have, when I’m driving the car, once again, I have to have faith that the lights that I stop at are going to, in fact, when it’s red on my side, it’s going to be green on the other side. And at some point it’s going to switch and it’s going to go green on my side and it will definitely go red on the other side so that we don’t collide. You know, there’s faith. We practice faith all the time throughout our day, throughout our whole life without even really knowing it and without needing to practice faith in a religious way. ⁓ And that’s what I’ve kind of got out of my whole, my whole journey is I didn’t find God so much in that I see God differently these days. I kind of believe that God is me. I am God, God is within me. So when I request a solution, if I use the word God in the sentence, God guide me to find the answer to this difficult question, what I’m actually doing is I’m having an internal conversation with myself. And I’m asking myself, my unconscious self to guide me to find the answer in this particular way. And that way I can combine God, the non-religious version of God, we’ll call it spirit or our creator or whatever you want to call it. And I can embody that and then make it part of me. And then in the right context, I can access the wisdom of God, the creator, nature, whoever, and I can be guided instinctively to follow my gut to an answer. And then if I go down a particular path that was not that way, and I find the wrong path, I can redirect, go back in, redirect and go again. So I became I suppose more, maybe the word is spiritual, it’s probably not the right word, but it’s how I kind of practice my, what you might call connection to God and faith. That’s how I practice it. How does that sound to you? Jonathan Arevalo (49:08) Yes, for me, it’s having faith is believing without seeing. And whenever you build a relationship with God is the moment that you start to learn who God is. And when you read God’s Word, God’s Word teaches us about His promises. His promises that He has for each one of His children, which God created, heaven and earth and everything that we see. And the fact that we breathe and and all that, that’s God who does that. there was this, the other day I was reading and it’s ⁓ in the Bible in the book of Isaiah, who’s a prophet. And it was based on the story of a king and the king is his name is Hezekiah. And Hezekiah had an illness, but not only that, it said, actually, can I read it in? in a second. So it says in his book that It says in Isaiah 38, it says, In those days, Hezekiah became ill and was at the point of death. The prophet Isaiah, son of Amoz, went to him and said, What is what the Lord says? Put your house in order, because you are going to die. You will not recover. Hezekiah turned his face to the wall and prayed to the Lord. Remember, Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes. And Hezekiah wept bitterly. Then the word of the Lord came to Isaiah. Go and tell Hezekiah, this is what the Lord, the God of your father, David, says. I have heard your prayer and seen your tears. I will add 15 years to your life and I will deliver you and this city from the hand of the king of Azariah. I will defend this city. This is the Lord’s sign to you that the Lord will do what he has promised.” So when I read that, I said, wow, how amazing God is that not only does he give promises to either kings and all of that during 2000 years ago in history and how God is still faithful to each one of us. Why? Because each one of us have a purpose and because God has created us with purpose is the reason why his love and mercy is so great. And that’s why I’m thankful for it I know that God is faithful and because his faithfulness He’s given me a second opportunity to live. Bill Gasiamis (52:16) Yeah. So you you take your Bible everywhere now. Jonathan Arevalo (52:21) I take his word everywhere in my heart and I find it that his word is real and is truthful because without God’s word, there’s no life. Bill Gasiamis (52:28) Yeah. So what about before stroke? Were you somebody that knew the scripture? Were you somebody that ⁓ had that type of connection to the word? Jonathan Arevalo (52:47) I didn’t have that connection as much as I have it now. Bill Gasiamis (52:51) Yeah. That’s cool. Jonathan Arevalo (52:53) And that goes based on like we spoke earlier about having a relationship. It’s not really following a religion. It’s knowing that there’s something greater than us. That’s the difference. Bill Gasiamis (53:05) Yeah. I agree with that. Jonathan Arevalo (53:09) And when we know that there’s something greater than us, then we can see that things change. But only things change only if we change ourselves in the inside. Because remember, this world that we live in, as I said earlier, we live in a broken world, right? A broken world where we find a lot of chaos and a lot of things going on. But without that love, without that peace, without that joy, that can only come. through the creator, which is God. And that’s the only way that you can actually be molded to the righteous man of who God has created in us. But we just need to know how to find that. And that way is through His word. His word teaches us that. And the moment that we apply that to our lives, day by day, the same way like with our health, our sickness, our weakness, our insecurities, How can we change that? We can only change it the moment that we apply it into our lives, little by little. And through that is the moment that we can see transformation and a step of moving forward and also breakthrough. Breakthrough is only done through changing our old selves. Because our old self is very hard to break, because we still carry that. Understanding Suffering and Connection to God Bill Gasiamis (54:35) Yeah, I agree with a lot of what you’re saying. Some people will be listening and going, well, if God is so good, why did God do this to me? You know, some people are far more injured because of stroke than you or I, even though your injuries and mine are all valid. There’s people who won’t walk again. There’s people who lose their memory, who can’t remember anymore. There’s people who cannot get their speech back. There’s people who’s… left arm, right leg won’t work again, then there’s people who will pass away. And then some of those people find that they’ve been harshly treated by God, by their maker, their creator. How do you talk to people like that to make them feel like it’s not personal? God, your creator, your maker has not gone after you and ⁓ is not punishing you. Like what do you say to people who lose connection with spirit, with God, with their creator? Jonathan Arevalo (55:40) Yeah, well, what I can say is that that God is so merciful, right? And because God is so merciful and through His love, we see in God’s Word that He died for us in the cross for our sins and is due to sin that we go through all these challenges. And that’s the connection through a broken world that we live in. is because everything comes from sin. And sometimes it’s hard to say, why is this happening to me? Or why am I not getting better? Well, everything goes back to sin. And because until we kind of, until we accept Jesus Christ, but not only accept Jesus Christ, but at the same time, God allows certain things that we have to go through. We have to go through certain challenges or obstacles, right? But it’s really hard to say. I find it. Maybe to answer that question. Bill Gasiamis (56:47) Yeah. I actually don’t mind the word sin when you use the word sin, because I’ve recently discovered ⁓ some people’s meaning of the word sin is to take that an incorrect aim to aim in the wrong direction. And I really relate to that. So when I sin, I don’t kind of see it as a, ⁓ you good, me bad. Like, do you know, don’t, I don’t sort of see that type of thing. It’s just aiming in the wrong direction. For example, previously my life was led by my head. It was my head that was telling me this sounds like a good idea. Yeah, we should have three cars. We should have the biggest house possible. We should do all of that. My head was guiding my life, whereas now my head is supporting my heart to guide my life. That’s why the podcast exists, because the podcast is not about what my head thinks is a good idea. Because if my head thought it was a good idea, this podcast should be making a shitload of money and it’s not making a ton of money. That’s why I request support from Patreon. That’s why I wrote a book to make a little bit of money so that I can ⁓ cover the costs of recording, editing, uploading, hosting a podcast. Like that’s the reason why it needs to make money, but it doesn’t need to make hundreds of thousands or millions and millions of dollars. My head in the old days would be going, dude. Don’t ever do 400 episodes of stroke survivors podcast. I’m not interested in that. And I, and I would be going, okay, what do I need to do? And my head would be going, you need to 24 hours a day, seven days a week and make as much money as you can. So you can have all the things that we’re told by the marketing companies that you need to have. I see that as a sin. Do you understand? That is the wrong aim. I’ve taken aim. dude and I’m putting all my energy into the wrong things. Whereas now I’ve taken aim and adjusted and now I think I’m aiming in the right direction. It’s about purpose, meaning, connecting with other people, helping other people, supporting other people. I’m no longer sinning in that particular way. That’s the literal description of the word sin. So it’s really important that I learned that because if I didn’t learn that I would be taking when I hear the word sin as a me bad, everyone else good. And that’s definitely not what it is. And that’s what I think the, the bleeding in my brain helped me adjust the aim, redirect where I was heading in my life, who was important, why they were important to me. ⁓ and, and my community is not a church. but I’m creating my own community on this podcast, know, 400 interviews, people who reach out from you all around the world. It’s the same kind of community, giving community as a church community is. We support each other, we help each other, we give people information, we connect other people with ⁓ doctors and conditions and solutions. So it’s like, yeah, that’s what I was lacking. I was lacking community. Jonathan Arevalo (1:00:01) community. Bill Gasiamis (1:00:02) I was lacking people who understood me and who were similarly aligned to me. You know, I was connecting with people who were sinning in their own way because their direction was all wrong and we were finding each other and we were making life harder for ourselves by being all in our heads and not connected to our body and our heart, right? Jonathan Arevalo (1:00:23) Yeah, that’s right. Bill Gasiamis (1:00:25) That’s kind of my religious journey without connecting it to a religion or to a religious chapter or to a church in a particular location. But I still feel like it’s a religious journey, you know? Jonathan Arevalo (1:00:39) Yes, like the moment that you build fellowship as we’re doing right now, we’re sharing our stories and we’re sharing our journey as stroke survivors. And through this story is what shows which is what shows purpose and also can leave an impact to others, survivors. Because if we don’t show a difference and if we don’t help support other people, then what purpose do we have on this earth? Right? We’re here to help one another and to be different in a good way. Building Community and Fellowship Because every single time we’re always going to be going through different challenges. Whether it’s negative thoughts or everything that we see on TV. Because every single time that we’re looking at the news is always bad news, So all those negative thoughts are something that we are affected day by day. And the only way that we’re able to overcome those negative thoughts is by putting ourselves surrounded in other things. Other things that can help us strengthen our mind, our body, and emotions. But that’s something that takes day by day. Bill Gasiamis (1:02:14) Yeah, I love it. I love your journey. I love how similar we are in our path, even though we talk about it in a slightly different way. ⁓ Leading a good example is something that was very important to me. I want to be a good example for my kids. In my book, ⁓ the dedication says to all the stroke survivors who are dealing with the aftermath of stroke. and despite it all are seeking transformation and growth. And that’s the first part of the dedication. And the second part of the dedication says to my family, I hope that that I have set a good example. I mean, my only goal, my only goal is to set a good example, to show them when adversity comes, how you can respond. There’s a Jonathan Arevalo (1:02:59) Thank Bill Gasiamis (1:03:10) I think there’s a way to respond that’s wrong. And then there’s many ways to respond that are right. There’s a one, there’s unfortunately, you know, responding by going back to the way that you were before, think is the wrong way to respond. then finding a new path forward, taking aim and choosing the wrong direction, sinning, and then readjusting, and then going again in another direction, I believe. like is the example that we need to set for other people just so that my kids can see in the future when they go through a tough time, they go, I think I remember one way that my dad did it that might be supportive of my recovery down the path and see, okay, this is what dad did. I don’t need to do what dad did, but this is kind of how he thought about that and how he approached that. That’s really. what I was sitting out to achieve. And I think I’ve achieved that and I feel really good about that, you know. Jonathan Arevalo (1:04:17) Yeah, no, I think that’s excellent, Bill. I’m glad that you were able to create a podcast. And ⁓ thank you for this opportunity because I never thought I’d be able to share my story. And as well for the fact that your sharing was called, ⁓ that you created a book to tell about your stroke survival. And I think that that’s going to impact many, many, many other survivors. They’re going through difficult times and I think that’s amazing. Bill Gasiamis (1:04:52) Yeah, thank you. A lot of people have bought it. I think there’s at least 600 copies being sold at this stage. And that’s not a lot. It’s not a million copies, but ⁓ it was never about the number. It was just about having it available just so that people can come across it if they need to and ⁓ read it and just see a different perspective of how you can approach your recovery. ⁓ You can get the book at recoveryafterstroke.com/book for anyone that’s watching and listening. So as we kind of get to the end of this interview, tell me what’s next for you. What’s on the to-do list? What goals do you have that you want to achieve? Future Goals and New Beginnings Jonathan Arevalo (1:05:31) Yes, well, what I’ve been able to achieve ⁓ was that I ended up getting married this year. Thank you. It wasn’t something expected because I thought maybe it’s not going to be possible to meet someone based on my condition and everything, but… Everything changed. And so I got married on April 11th of this year. So I’m now married. And the other thing that I started this year was besides the volunteering, I also created ⁓ my own like small business when it comes to mentorship to help other people, which are people that are either stroke survivors. People with disability and also mental health. And I created my website on that to help a lot of people. And it’s ⁓ non-profit at the moment, which is donation-based. And I’m still helping in the community. I still volunteer. And I still ⁓ help out in the church and many other places. So those are the things that I’m still currently doing. Bill Gasiamis (1:07:02) Fantastic, man. So the website, we will have the links to all of the different social media and your website, et cetera, for people to follow if they want to connect with you. ⁓ The journey that you’re on, you’re calling it the 20, the project 21. Jonathan Arevalo (1:07:28) Yes. The reason I called it Project 21, because this journey that I’m going through is like a form of a project. And everything started in 2021. So that’s why I decided to pick something unique and different and call it Project 21. Bill Gasiamis (1:07:51) Yeah, fantastic, Jonathan. I really appreciate our conversation. Thank you for reaching out and joining me on the podcast. I love the work that you’re doing and will continue to do. There’s many, many years ahead of you of doing fantastic work and I look forward to keeping in touch and finding out how your journey unfolds. Jonathan Arevalo (1:08:14) Yes, thank you, Bill. I appreciate it. Bill Gasiamis (1:08:17) Well, thanks so much for listening to this episode of the Recovery After Stroke podcast. And thank you to Jonathan for sharing a story that takes a lot of courage to revisit. One thing I hope you take from this conversation is that recovery is never just physical. It’s emotional, it’s messy, it’s confusing, but it is also an opportunity to rediscover who you can become. Jonathan’s journey shows that healing doesn’t always look like we expect. And sometimes the smaller steps forward end up becoming the most meaningful ones. If this episode helped you feel understood or gave you something to think about on your recovery path, remember to visit patreon.com/recoveryafterstroke. Some people believe their support won’t make a difference, but that’s an assumption that simply isn’t true. Every contribution helps me continue producing these episodes, keep them online and moving toward my goal of recording a thousand conversations. So no stroke survivor ever has to feel like they’re going through this alone. And if you haven’t already, you can also order my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Many listeners expect it to be just my personal story, but it’s actually something much more useful. It’s the guide I wish existed when I was confused, overwhelmed, and trying to figure out how to rebuild my life after stroke. Thank you again for being here, for listening, and for supporting the work in whatever way you can. You’re not alone in this. and I’ll see you on the next episode. 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 Gassiamus. 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 subst
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Her stroke was missed for 12 days. What followed was fatigue, guilt, advocacy, and a powerful return to purpose. A must-hear for stroke survivors. The post She Collapsed in a Hotel Room. 12 Days Later, They Found the Stroke appeared first on Recovery After Stroke.
Mike's story of stroke, diabetes, and burnout shows how recovery, resilience, and emotional healing can lead to a stronger, healthier future. The post From Stroke to Strength: Mike's Journey Through Diabetes and Burnout appeared first on Recovery After Stroke.
UCLA stroke drug study gives stroke survivors fresh hope for recovery. Discover how this breakthrough compares to treatments like etanercept and HBOT. The post This Drug Mimics Stroke Rehab – And It's Real. Here's What You Need to Know appeared first on Recovery After Stroke.
Jeff Ryberg's stroke was caused by AFib and alcohol. His inspiring recovery offers hope, healing, and lessons for stroke survivors everywhere. The post Stroke at 55: Jeff Ryberg's Story of Surviving AFib, Alcohol & a Life-Altering Wake-Up Call appeared first on Recovery After Stroke.
Carotid artery dissection survival story inspiring stroke survivors to keep going, seek rehab, and embrace hope even in the hardest times. The post Carotid Artery Dissection Nearly Took Everything – But I'm Still Standing appeared first on Recovery After Stroke.
Helius PoNS Device brings new hope to stroke survivors by rewiring the brain with neuroplastic therapy and real-world recovery results. The post Unlocking Neuroplasticity: How the Helius PoNS Device Rewires the Brain After Stroke appeared first on Recovery After Stroke.
Post-traumatic growth is more than survival—it's transformation. Discover how stroke recovery can lead to purpose, strength, and renewed life. The post The Growth You Didn't Know You Were Having – Post Traumatic Growth After Stroke appeared first on Recovery After Stroke.
Doug's invisible stroke left him cognitively fatigued—but his powerful story shows that healing, support, and meaning are still possible. The post Understanding Cognitive Fatigue After Stroke: Doug's Journey to Doug 2.0 appeared first on Recovery After Stroke.
A stroke survivor's raw and inspiring story of healing, resilience, and discovering purpose after three brain bleeds and brain surgery. The post This Stroke Recovery Journey Might Change How You See Everything appeared first on Recovery After Stroke.
Diabetic Stroke: Tyrone Brown's Journey of Resilience and Recovery A Stroke Survivor's Wake-Up Call At 47, Tyrone Brown was living life at full speed—running businesses, serving his community, and enjoying time with his family. But one day, while out with his wife, something strange happened. He dropped a bag. Then, he dropped it again. What […] The post From Stroke to Strength: Tyrone Brown's Diabetic Stroke Recovery Journey appeared first on Recovery After Stroke.
Living with invisible stroke deficits means fighting unseen battles daily. Learn how I manage stroke fatigue, spasticity, and mental challenges. The post Living with Invisible Stroke Deficits: The Challenges No One Sees appeared first on Recovery After Stroke.
After his stroke, musician Graham Hall struggled with speech. In this inspiring story, he shares his journey through Aphasia and recovery. The post The Hidden Struggle of Speech After Stroke: A Musician's Story appeared first on Recovery After Stroke.
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. 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.
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