Recovery After Stroke

Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living When Brandon Barre woke up after his stroke, half of his skull was missing. Doctors had performed an emergency craniotomy to save his life after a severe brain bleed. His left side barely worked. His memory felt fragmented. Time itself seemed unreliable; days, weeks, even months blurred together into what he later described as a kind of perpetual Groundhog Day. And yet, amid one of the most extreme medical experiences a person can survive, Brandon remained unexpectedly calm. This is a story about craniotomy stroke recovery, but it’s not just about surgery, rehab, or timelines. It’s about identity, mindset, and what happens when your old life disappears overnight, and you’re forced to rebuild from the inside out. Life Before the Stroke: Movement, Freedom, and Identity Before his stroke, Brandon lived a life defined by movement and autonomy. He worked in the oil fields as an MWD specialist, spending weeks at a time on drilling rigs. Later, he left what he called “traditional life” behind and spent years traveling the United States in an RV. He found work wherever he went, producing music festivals, building large-scale art installations, and immersing himself in creative communities. Stability, for Brandon, never meant stillness. It meant freedom. Stroke wasn’t on his radar. At 46, he was active, independent, and deeply connected to his sense of self. The Stroke and Emergency Craniotomy The stroke happened in Northern California after a long day of rock climbing with friends. Brandon didn’t notice the warning signs himself; it was others who saw that his arm wasn’t working properly. Later that night, he became profoundly disoriented. He was found the next morning, still sitting upright in his truck, barely conscious. Within hours, Brandon was airlifted to UC Davis Medical Center, where doctors removed a blood clot and performed a large craniotomy due to dangerous swelling. Part of his skull was removed and stored while his brain recovered. He spent 10 days in intensive care, followed by weeks in inpatient rehabilitation. Remarkably, he reports no physical pain throughout the entire process, a detail that underscores how differently each brain injury unfolds. Early Craniotomy Stroke Recovery: Regaining Movement, Losing Certainty Physically, Brandon’s recovery followed a familiar but still daunting path. Initially, he couldn’t walk. His left arm hung uselessly by his side. Foot drop made even short distances difficult. But what challenged him most wasn’t just movement; it was orientation. He struggled to track days, months, and time itself. Short-term memory lapses made planning almost impossible. Writing, once a core part of his identity, became inaccessible. He could form letters, but not their meaning. This is a common but under-discussed aspect of craniotomy stroke recovery: the loss isn’t only physical. It’s cognitive, emotional, and deeply personal. “It’s kind of like I’m in this perpetual day ever since the stroke… like Groundhog Day.” Technology as Independence, Not Convenience One of the quiet heroes of Brandon’s recovery has been voice-to-text technology. Because writing and spelling no longer function reliably, Brandon relies on dictation to communicate. Tools like Whisper Flow and built-in phone dictation restored his ability to express ideas, stay connected, and remain independent. This matters. For stroke survivors, technology isn’t about productivity. It’s about dignity. Identity Reset: Slower, Calmer, More Intentional Perhaps the most striking part of Brandon’s story is how little resentment he carries. He doesn’t deny frustration. He doesn’t pretend recovery is easy. But he refuses to live in constant rumination. Instead, he adopted a simple principle: one problem at a time. That mindset reshaped his lifestyle. He stopped drinking, smoking, and using marijuana. He slowed his pace. He became more deliberate with relationships, finances, and health decisions. He grew closer to his adult daughter than ever before. The stroke didn’t erase his identity, it refined it. Taking Ownership of Craniotomy Stroke Recovery A turning point came when Brandon realized he couldn’t rely solely on the medical system. Insurance changes, rotating doctors, and long waits forced him to educate himself. He turned to what he jokingly calls “YouTube University,” learning from other survivors and clinicians online. That self-directed approach extended to major medical decisions, including choosing monitoring over immediate invasive heart procedures and calmly approaching a newly discovered brain aneurysm with information rather than fear. His conclusion is clear: Recovery belongs to the survivor. Doctors guide. Therapists assist. But ownership sits with the person doing the living. A Message for Others on the Journey Toward the end of the conversation, Brandon offered advice that cuts through fear-based recovery narratives: Don’t let timelines define you. Don’t rush because someone says you should. Don’t stop because someone says you’re “done.” Every stroke is different. Every brain heals differently. And recovery, especially after a craniotomy, continues far longer than most people are told. Moving Forward, One Intentional Step at a Time Craniotomy stroke recovery isn’t just about regaining movement. It’s about rebuilding trust with your body, reshaping identity, and learning how to live with uncertainty without letting it dominate your life. Brandon’s story reminds us that even after the most extreme medical events, calm is possible. Growth is possible. And a meaningful life, though different, can still unfold. Continue Your Recovery Journey Learn more: https://recoveryafterstroke.com/book Support the podcast: https://patreon.com/recoveryafterstroke 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. Brandon’s Story: Surviving a Craniotomy, Redefining Identity, and Recovering on His Own Terms He survived a stroke and craniotomy, then calmly rebuilt his identity, habits, and life one deliberate step at a time. Research shortcut I use (Turnto.ai) I used Turnto.ai to find relevant papers and sources in minutes instead of hours. If you want to try it, here’s my affiliate LINK You’ll get 10% off, it’s about $2/week, and it supports the podcast. Highlights: 00:00 Introduction and Background01:52 Life Before the Stroke03:32 The Stroke Experience11:03 Craniotomy Stroke Recovery Journey17:09 Adjusting to Life Post-Stroke28:46 Living Independently After Stroke35:09 Facing New Challenges: Aneurysms and Uncertainty42:13 Support Systems: Finding Community After Stroke47:06 Identity Shift: Life Changes Post-Stroke58:39 Lessons Learned: Insights from the Journey Transcript: Introduction and Background Brandon (00:00)next morning was still in the driver’s seat with my head on the steering wheel. and I couldn’t make either of my arms work I had been bleeding into my brain for 12 hours overnight they had to go ahead and do a, craniotomy. And so they took this whole side. It was a big craniotomy. They took that whole section of my skull out, put it in the freezer Bill Gasiamis (00:27)Before we begin today’s episode, want to take a moment to speak to you directly. If you’ve had a stroke, you already know this part. The hospital phase ends, but the questions don’t. You’re sent home expecting to get on with it. And suddenly you’re left trying to work out recovery, mindset, fatigue, emotions, sleep and motivation all on your own. You shouldn’t have to. That’s why I wrote my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Not to tell you what to do, but to walk beside you and show you the tools real stroke survivors use to rebuild their lives when the system stopped helping. and now with this book, you won’t have to figure it out alone. You can find that at recoveryafterstroke.com/book. All right, let’s get into today’s episode. Today, you’re going to hear from Brandon Barre. Brandon was 46 years old, active, independent and living an unconventional life when he had a stroke that led to a craniotomy. where part of his skull was removed to save his life. What stood out to me immediately about Brandon wasn’t just the severity of what he went through. It was the calm grounded way he approached recovery, identity and rebuilding his life. This is a conversation about stroke recovery. Yes, but it is also about mindset, ownership and what happens when you decide to take recovery into your own hands. Life Before the Stroke (01:52)Brendan Barre, welcome to the podcast. Brandon (01:54)Thank you, man. (01:56)You struggled a little bit getting here. There’s a couple of little things that caused a bit of a challenge for you. What are those things? Brandon (02:05)Well, I mean, first of all, I’m, I’m, I’m, even before my stroke, I was never very computer-y. Um, so using my phone for more than just making phone calls is kind of new to me. Um, so yeah, a new microphone, that was fun. And then I had made a bunch of notes, not realizing that I probably wasn’t gonna be able to see those notes. Um, you know, so that was also a little bit of a issue, but uh, but yeah, other than that, man. Not much, you know, I mean I’m here. (02:37)Yeah. I remember receiving your emails about, I’m not sure what day we’re on. I need to reschedule all that kind of stuff. Stuff that I used to do heaps. I remember in the early days of my kind of stroke recovery, I used to make appointments, put them in my calendar, get reminders about my appointments and still be confused about the day, the time and the location of the appointment. Brandon (03:04)Yes, absolutely. That’s a big thing for me too. know, and I mean even just, you know, remembering from minute to minute where of what day, what month and everything I’m in right

Heard a Pop in My Head: The Stroke Warning Sign Most People Ignore When Phat heard a pop in his head, it didn’t feel dramatic. There was no collapse. No sirens. No panic. Just a strange sensation. A few minutes of numbness. Then… everything went back to normal. So he did what most people would do. He ignored it. Five days later, he was being rushed to the hospital with a hemorrhagic cerebellar stroke that nearly cost him his life. This is not a rare story. It’s a dangerously misunderstood stroke warning sign and one that often gets dismissed because the symptoms disappear. When You Hear a Pop in Your Head, Your Brain Might Be Warning You “Hearing a pop in my head” isn’t something doctors list neatly on posters in emergency rooms. But among stroke survivors, especially those who experienced hemorrhagic strokes, this phrase comes up more often than you’d expect. For Phat, the pop happened while stretching on a Sunday. Immediately after: His left side went numb The numbness lasted about five minutes Everything returned to “normal” No pain. No weakness. No emergency, at least that’s how it felt. This is where the danger lies. Stroke Symptoms That Go Away Are Often the Most Misleading One of the most common secondary keywords people search after an experience like this is: “Stroke symptoms that go away” And for good reason. In Phat’s case, the initial bleed didn’t cause full collapse. It caused a slow haemorrhage, a bleed that worsened gradually over days. By Friday, the real symptoms arrived: Severe vertigo Vomiting and nausea Inability to walk Double vision after stroke onset By Sunday, his girlfriend called an ambulance despite Phat insisting he’d “sleep it off.” That delay nearly killed him. Cerebellar Stroke: Why the Symptoms Are Easy to Miss A cerebellar stroke affects balance, coordination, and vision more than speech or facial droop. That makes it harder to recognise. Common cerebellar stroke warning signs include: Sudden dizziness or vertigo Trouble walking or standing Nausea and vomiting Double vision Head pressure without sharp pain Unlike classic FAST symptoms, these can be brushed off as: Inner ear issues Migraine Muscle strain Fatigue or stress That’s why “pop in head then stroke” is such a common post-diagnosis search. The Complication That Changed Everything Phat’s stroke was classified as cryptogenic, meaning doctors couldn’t determine the exact cause. But the consequences were severe. After repairing the bleeding vessel, his brain began to swell. Surgeons were forced to remove part of his cerebellum to relieve pressure and save his life. He woke up with: Partial paralysis Severe balance impairment Double vision Tremors Aphasia A completely altered sense of identity Recovery wasn’t just physical. It was existential. The Invisible Disability No One Warns You About Today, if you met Phat, you might not realise he’s a stroke survivor. That’s one of the hardest parts. He still lives with: Fatigue Visual processing challenges Limited multitasking ability Balance limitations Cognitive overload This is the reality of invisible disability after stroke when you look fine, but your nervous system is working overtime just to keep up. Recovery Wasn’t Linear — It Was Personal Phat describes himself as a problem solver. That mindset became his survival tool. Some of what helped: Self-directed rehabilitation (sometimes against advice) Meditation and breath-counting to calm the nervous system Vision therapy exercises to retrain eye coordination Strength and coordination training on his affected side He walked again after about a year. Returned to work after two. And continues to adapt more than four years later. Recovery didn’t mean returning to the old version of himself. It meant integrating who he was with who he became. Why This Story Matters If You’ve Heard a Pop in Your Head This blog isn’t here to scare you. It’s here to clarify something crucial: If you hear a pop in your head followed by any neurological change, even if it goes away, get checked immediately. Especially if it’s followed by: Numbness Vision changes Balance issues Confusion Head pressure or vertigo Stroke doesn’t always announce itself loudly. Sometimes it whispers first. You’re Not Alone — And Recovery Is Possible Phat now runs a platform called Hope for Stroke Survivors, sharing stories, tools, and reminders that recovery doesn’t end when hospital rehab stops. If you’re early in recovery, or terrified after a strange symptom, remember this: Stroke recovery is complex Timelines vary Healing continues for years You don’t have to do it alone Learn more about recovery journeys and tools in Bill Gasiamis’ book: The Unexpected Way That a Stroke Became The Best Thing That Happened Support the podcast and community on Patreon: Patreon.com/Recoveryafterstroke “I heard a pop in my head… and because everything felt normal again, I ignored it.” Final Thought If this article helped you name something you couldn’t explain before, share it with someone you love. Because sometimes, recognising a stroke doesn’t start with fear. It starts with understanding. 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. “I Heard a Pop in My Head” — Phat’s Cerebellar Stroke Story A pop. Five minutes of numbness. Then everything felt “normal.” Days later, Phat collapsed with a cerebellar haemorrhage. Phat Cao’s Linktree Research shortcut I use (Turnto.ai) I used Turnto.ai to find relevant papers and sources in minutes instead of hours. If you want to try it, my affiliate LINK PDF Download The Present Moment Is All We Have: You survived the stroke. Now learn how to heal from it. Highlights: 00:00 Introduction and Life Before the Stroke 01:14 The Stroke Experience 09:05 Initial Diagnosis and Recovery 13:29 Rehabilitation Journey Begins 17:44 Mental Challenges of Recovery 22:40 Identity Transformation Post-Stroke 30:57 Mindset Shifts and Control 36:39 Breath Control Techniques for Stress Relief 42:04 Managing Tremors and Physical Recovery 48:09 Growing an Online Presence and Sharing Stories 01:01:01 Understanding Stroke Recovery Transcript: Phat (00:00) on a Sunday. And then it wasn’t until I felt like severe stroke symptoms on a Friday, which was about, what is it, four or five days. And then I didn’t think I was having a stroke because I didn’t realize the details of the stroke. And so I just went about my day on that Sunday and until Friday I started getting like some BEFAST symptoms and then, you know, I tried to sleep it off it was actually just me and my girlfriend at the house and then she didn’t feel, comfortable. So then she called the ambulance, even though I told her I’ll just sleep it off. It’s okay. Introduction and Life Before the Stroke Bill Gasiamis (00:37) today’s guest is Fat Kyle, a stroke survivor who experienced something most people would brush off. He heard a pop in his head. It went away, so he kept going. Days later, his brain was bleeding. Fat story isn’t traumatic for the sake of it. It’s honest, it’s thoughtful, and it speaks directly to anyone who’s ever ignored a symptom because it didn’t last. In this conversation, we talk about delayed stroke symptoms, cerebellar hemorrhage, identity loss, invisible disability, meditation, and what it really takes to rebuild a life when your old one disappears. And if you’ve ever had that moment where you thought, was that something or nothing? This conversation really matters. Now, before we get into it, I want to briefly mention something that fits naturally with this topic. When you’re dealing with stroke, whether you’re newly affected or years into recovery, finding clear relevant information can be exhausting. research opinions, patients, stories and updates constantly coming out. And most of it isn’t written. with stroke survivors in tool I personally use and find helpful is Turn2. I like it because it cuts down the time and energy it takes to stay informed. Instead of digging through endless articles, Turn2.ai pulls together all stroke-related research updates, expert insights, and patient discussions in one place based on what you actually care about. It’s not about replacing doctors, it’s about reducing noise. when your focus, energy and capacity are limited. You’ll find the link in the description. And just to be transparent, if you choose to use my link, it helps support the podcast at no extra cost to you. All right, let’s get into Fats story. Bill Gasiamis (02:23) Phat Cao Welcome to the Phat (02:26) Hey Bill, thank you. It’s an honor to meet you. Bill Gasiamis (02:29) pleasures all mine. I pronounce that correctly? Phat (02:32) Yeah, you know you did. It’s not that complicated. Fat Cal is right. I blame my parents. Bill Gasiamis (02:39) Fair enough. that a common name in Vietnam? Phat (02:42) You know, it’s not a common name. Actually, it’s not a common Vietnamese name. But a lot of people do have fat, the first name, and then the last name people do. Some people do have it. It just happens in America, it means something else, you know, in English. Bill Gasiamis (02:58) It totally does, it sounds like I’m being mean. Phat (03:01) Yeah, I get it all the time. I’ve had to grow up like this. It’s been kind of rough. Bill Gasiamis (03:08) I hear you. Have you ever considered making a change to one of the names just for the sake of ease? Phat (03:15) Phat’s so funny. You know what? Because I wasn’t born in the US, because I live in the US. And when I got my citizenship, that was something I thought about. But then after I thought about it, I’m like, well, this is the name that was given to me. Vietnamese, it means something else. And so then I decided to keep it. Bill Gasiamis (03:33) What does it mean in Vietnamese? Phat (03:34) Phat was kind of like, means prosperity and also like high prosperity. Bill Gasiamis (03:41) Dude, that’s a coo

Moyamoya Syndrome Stroke Recovery: Judy Kim Cage’s Comeback From “Puff of Smoke” to Purpose At 4:00 AM, Judy Kim Cage woke up in pain so extreme that she was screaming, though she doesn’t remember the scream. What she does remember is the “worst headache ever,” nausea, numbness, and then the terrifying truth: her left side was shutting down. Here’s the part that makes her story hit even harder: Judy already lived with Moyamoya syndrome and had undergone brain surgeries years earlier. She genuinely believed she was “cured.” So when her stroke began, her brain fought the reality with everything it had. Denial, resistance, bargaining, and delay. And yet, Judy’s story isn’t about doom. It’s about what Moyamoya syndrome stroke recovery can look like when you keep going, especially when recovery becomes less about “getting back to normal” and more about building a new, honest, meaningful life. What Is Moyamoya Syndrome (And Why It’s Called “Puff of Smoke”) Moyamoya is a rare cerebrovascular disorder where the internal carotid arteries progressively narrow, reducing blood flow to the brain. The brain tries to compensate by creating fragile collateral vessels, thin-walled backups that can look like a “puff of smoke” on imaging. Those collateral vessels can become a risk. In Judy’s case, the combination of her history, symptoms, and eventual deficits marked a devastating event that would reshape her life. The emotional gut punch wasn’t only the stroke itself. It was the psychological whiplash of thinking you’re safe… and discovering you’re not. The First Enemy in Moyamoya Stroke Recovery: Denial Judy didn’t just resist the hospital. She resisted the idea that this was happening at all. She’d been through countless ER visits in the past, having to explain Moyamoya to doctors, enduring tests, and then being told, “There’s nothing we can do.” That history trained her to expect frustration and disappointment, not urgent help. So when her husband wanted to call emergency services, her reaction wasn’t logical, it was emotional. It was the reflex of someone who’d been through too much. Denial isn’t weakness. It’s protection. It’s your mind trying to buy time when the truth is too big to hold all at once. The Moment Reality Landed: “I Thought I Picked Up My Foot” In early recovery, Judy was convinced she could do what she used to do. Get up. Walk. Go to the bathroom. Handle it. But a powerful moment in rehab shifted everything: she was placed into an exoskeleton and realized her brain and body weren’t speaking the same language. She believed she lifted her foot, then saw it hadn’t moved for several seconds. That’s when she finally had to admit what so many survivors eventually face: Recovery begins the moment you stop arguing with reality. Not because you “give up,” but because you stop wasting energy fighting what is and start investing energy into what can be. The Invisible Battle: Cognitive Fatigue and Energy Management If you’re living through Moyamoya syndrome stroke recovery, it’s easy for everyone (including you) to focus on the visible stuff: walking, arms, vision, and balance. But Judy’s most persistent challenge wasn’t always visible. It was cognitive fatigue, the kind that makes simple tasks feel impossible. Even something as ordinary as cleaning up an email inbox can become draining because it requires micro-decisions: categorize, prioritize, analyze, remember context, avoid mistakes. And then there’s the emotional layer: when you’re a perfectionist, errors feel personal. Judy described how fatigue increases mistakes, not because she doesn’t care, but because the brain’s bandwidth runs out. That’s a brutal adjustment when your identity has always been built on competence. A practical shift that helped her Instead of trying to “finish” exhausting tasks in one heroic sprint, Judy learned to do small daily pieces. It’s not glamorous, but it reduces cognitive load and protects energy. In other words: consistency beats intensity. Returning to Work After a Moyamoya Stroke: A Different Kind of Strength Judy’s drive didn’t disappear after her stroke. If anything, it became part of the recovery engine. She returned slowly, first restricted to a tiny number of hours. Even that was hard. But over time, she climbed back. She eventually returned full-time and later earned a promotion. That matters for one reason: it proves recovery doesn’t have one shape. For some people, recovery is walking again. For others, it’s parenting again. For others, it’s working again without losing themselves to burnout. The goal isn’t to recreate the old life perfectly. The goal is to build a life that fits who you are now. [Quote block mid-article] “If you couldn’t make fun of it… it would be easier to fall into a pit of despair.” Humor Isn’t Denial. It’s a Tool. Judy doesn’t pretend everything is okay. She’s not selling toxic positivity. But she does use humor like a lever, something that lifts the emotional weight just enough to keep moving. She called her recovering left hand her “evil twin,” high-fived it when it improved, and looked for small “silver linings” not because the stroke was good, but because despair is dangerous. Laughter can’t fix Moyamoya. But it can change what happens inside your nervous system: tension, stress response, mood, motivation, and your willingness to try again tomorrow. And sometimes, tomorrow is the whole win. Identity After Stroke: When “Big Stuff Became Small Stuff” One of the most profound shifts Judy described was this: the stroke changed her scale. Things that used to feel huge became small. Every day annoyances lost their power. It took something truly significant to rattle her. That’s not magical thinking. That’s a perspective earned the hard way. Many survivors quietly report this experience: once you’ve faced mortality and rebuilt your life from rubble, you stop wasting precious energy on what doesn’t matter. Judy also found meaning in mentoring others because recovering alone can feel like walking through darkness without a map. Helping others doesn’t erase what happened. But it can transform pain into purpose. If You’re In Moyamoya Syndrome Stroke Recovery, Read This If your recovery feels messy… if you’re exhausted by invisible symptoms… if the old “high achiever” version of you is fighting the new reality… You’re not broken. You’re adapting. And your next step doesn’t have to be dramatic. It just has to be honest and repeatable: Simplify the day Protect energy Build routines Accept help Use humor when you can And find one person who understands Recovery is not a straight line. But it is possible to rebuild a life you actually want to live. If you want more support and guidance, you can also explore Bill’s resources here: recoveryafterstroke.com/book 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. Judy Kim Cage on Moyamoya Stroke Recovery, Cognitive Fatigue, and Finding Purpose Again She thought Moyamoya was “fixed.” Then a 4 AM headache proved otherwise. Judy’s comeback will change how you see recovery. Judy’s Instagram Highlights: 00:00 Introduction and Guest Introduction 01:43 Life Before the Stroke 11:17 The Moment of the Stroke 19:56 Moyamoya Syndrome Stroke Recovery 25:36 Cognitive Fatigue and Executive Functioning 34:50 Rehabilitation Experience 42:29 Using Humor in Recovery 46:59 Finding Purpose After Stroke 54:19 Judy’s Book: Super Survivor 01:05:20 Conclusion and Final Thoughts Transcript: Introduction and Guest Introduction Bill Gasiamis (00:00) Hey there, I’m Bill Gasiamis and this is the Recovery After Stroke podcast. Before we jump in a quick thank you to my Patreon supporters. You help cover the hosting costs after more than 10 years of doing this independently. And you make it possible for me to keep creating episodes for stroke survivors who need hope and real guidance. And thank you to everyone who supports the show in the everyday ways too. The YouTube commenters, the people leaving reviews on Spotify and Apple. The folks who bought my book and everyone who sticks around and doesn’t skip the ads. I see you and I appreciate you. Now I want you to hear this. My guest today, Judy Kim Cage, woke up at 4am with the worst headache of her life and she was so deep in denial that she threatened to divorce her husband if he called 911. Judy lives with Moyamoya syndrome, a rare cerebrovascular condition often described as the puff of smoke on imaging. She’d already had brain surgeries and believed she was cured until the stroke changed everything. Judy also wrote a book called Super Survivor and it’s all about how denial, resistance and persistence can lead to success and a better life after stroke. I’ll put the links in the show notes. In this conversation, we talk about Moyamoya Syndrome, stroke recovery, the rehab moment where reality finally landed. and what it’s like to rebuild life with cognitive fatigue and executive functioning challenges and how Judy used humor and purpose to keep moving forward without pretending recovery is easy. Let’s get into it. Judy Kim Cage, welcome to the podcast. Life Before Moyamoya Syndrome Judy Kim Cage (01:43) Thank you so much, Bill Bill Gasiamis (01:45) Thanks for being here. Can you paint us a picture of your life before the stroke? What were your days like? Judy Kim Cage (01:51) Hmm. Well, my life before the stroke was me trying to be a high achiever and a corporate nerd. I think so. I think so. I, you know, I was in the Future Business Leaders of America in high school and then carried that forward to an accounting degree. Bill Gasiamis (02:04) Did you achieve it? Judy Kim Cage (02:20) and finance and then ⁓ had gone to work for Deloitte and the big four. ⁓ And after that moved into ⁓ internal audit for commercial mortgage and then risk and banking and it all rolled into compliance, which is

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, se

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 (0

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

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 t

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 an

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

Basilar Artery Stroke: The Warning Signs Daniel Didn’t See ComingWhen people think of a stroke, they often imagine the classic symptoms — facial drooping, slurred speech, or one-sided weakness. But the basilar artery, which feeds the brainstem and cerebellum, behaves differently. When it blocks, symptoms can be subtle at first, then escalate with terrifying speed.That’s what happened to 28-year-old triathlete Daniel Coggins, who went from finishing a morning run to collapsing on the bathroom floor within minutes. His story highlights the symptoms many people miss, the dangerous delays that can happen in emergency care, and the critical signs every family needs to know.What Is a Basilar Artery Stroke?The basilar artery is one of the most vital arteries in the brain. It supplies blood to areas responsible for coordination, balance, vision, swallowing, and consciousness.When this artery becomes blocked — called a basilar artery occlusion — the results can be catastrophic. It’s one of the deadliest, most time-critical forms of stroke.Common symptoms of basilar artery occlusion can include:Sudden dizziness or vertigoSevere imbalanceDouble vision or blurred visionSudden headacheSlurred speechSudden collapseLimb shaking or full-body thrashingLoss of consciousnessDifficulty swallowingNausea and vomitingDaniel experienced several of these in rapid succession — and like many young, fit people, he had no idea they pointed to one of the most serious neurological emergencies.The Morning Everything ChangedDaniel’s day started the same way many active people begin theirs: a run with his wife. They jogged four miles, felt good, and returned home.Then everything shifted.After his shower, Daniel suddenly felt the room spin violently. He sat down on the toilet, trying to regain balance — but within moments, his body began thrashing uncontrollably. All four limbs were seizing, yet he remained conscious enough to call his wife for help.Within minutes:He could no longer hold himself upright.He lost all strength.His speech began to deteriorate.His body became a “dead weight.”These symptoms are classic for vertebrobasilar stroke, but because they can mimic dehydration, vertigo, heat stroke, or even a seizure, many survivors — and medical staff — don’t immediately recognise what’s happening.The Danger of MisdiagnosisEven when paramedics arrived, they suspected dehydration or heat exhaustion.At the hospital, Daniel sat in the waiting room — actively deteriorating — because his symptoms didn’t fit the stereotypical stroke picture.This is far more common than people realise.Basilar artery strokes can be missed because:They often don’t involve one-sided weakness.They may begin with dizziness, which is easy to dismiss.Motor activity (like thrashing) can look like a seizure.Young, healthy people are often assumed to be “low risk.”But as Daniel’s story shows, healthy, athletic people can and do experience severe strokes.When the Stroke Was Finally IdentifiedOnce he was finally assessed, everything changed.Scans revealed a large clot in the basilar artery. Without immediate intervention, this type of stroke can lead to brainstem compression, coma, or death.Doctors acted fast:They performed an emergency clot retrieval.Hours later, they noticed severe swelling in his brain.A nurse practitioner pushed for an earlier scan — a decision that saved Daniel’s life.He was rushed for an emergency craniotomy, removing part of his skull to relieve pressure.The entire left cerebellum had been damaged beyond recovery.Daniel was placed in intensive care for two weeks, and his memory of the early days disappears almost entirely, a typical experience after severe cerebellar injury.Basilar Artery Occlusion Symptoms: Why They’re Often MisunderstoodDaniel’s case highlights a critical problem:Many people don’t know the early signs of a vertebrobasilar stroke.Typical early symptoms include:1. Sudden vertigo or dizzinessA major red flag, especially when paired with nausea or imbalance.2. Loss of coordinationBecause the cerebellum is involved, clumsiness, staggering, or sudden unsteadiness often appear early.3. Irregular limb movementsThrashing, shaking, or seizure-like activity is more common than most realise.4. Loss of strength or collapseThis can happen without warning.5. Sudden slurred speechEven without facial droop.6. Difficulty staying conscious or alertChanges in awareness should be treated as an emergency.If someone experiences even one of these symptoms suddenly, especially after exertion or illness, it’s time to call emergency services immediately.Life After a Basilar Artery StrokeDaniel entered rehab with significant deficits:He couldn’t swallow.He couldn’t walk or stand.His speech was severely slurred.His left hand and arm lost fine motor function.His emotions were hard to regulate due to cerebellar damage.Yet he kept going.Months later, he returned to hiking — even completing a 2,000-ft elevation trail. He completed a triathlon relay, swimming the opening segment. He returned to work and leadership roles within his community.The cerebellum’s plasticity is remarkable, and Daniel is living proof of how far survivors can come — even when early scans look devastating.Why Awareness MattersBasilar artery strokes are rare but extremely dangerous. Early recognition is everything.Daniel’s story is more than a medical case — it’s a reminder that:Not all strokes look the same.Young, fit people are not immune.Dizziness + collapse is a stroke until proven otherwise.Advocacy from nurses, partners, and family saves lives.Recovery is possible, even after severe cerebellar damage.And for anyone experiencing the uncertainty and fear of early recovery: your story isn’t over.“Basilar artery strokes don’t always look like strokes. But when they’re missed, the consequences can be devastating.”Daniel’s experience shows why early symptoms like dizziness, collapse, or limb thrashing must be taken seriously. Every survivor who learns the signs helps protect someone else.And every story shared helps another survivor feel less alone.Disclaimer (Footer Required)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.From Collapse to Craniotomy: Daniel Coggins’ Basilar Artery Stroke StoryDaniel’s basilar artery stroke changed everything, yet what he discovered about faith, healing, and resilience may surprise you.Support The Recovery After Stroke Podcast on PatreonHighlights:00:00 Introduction and Background04:05 The Day of the Basilar Artery Stroke10:31 Emergency Response and Hospitalization14:18 The Impact of the Stroke22:08 Learning to Accept Help27:40 Personal Growth and Reflection38:02 Finding Peace Amidst Chaos43:12 Navigating Emotional Challenges Post-Stroke51:31 Finding Purpose in Pain56:40 Heightened Emotional Sensitivity as a Gift01:02:01 Sharing Stories and Raising Awareness01:12:53 Life After Stroke: Embracing New Beginnings01:15:52 Advice for Stroke Survivors01:20:03 The Dichotomy of Support and Loneliness01:25:36 Celebrating Progress and AchievementsTranscript:Introduction and BackgroundBill Gasiamis (00:00)Hey, it’s Bill. Before we dive in, I wanna say a heartfelt thank you to everyone who supports the show on Patreon. After more than 10 years of producing, editing, recording, your support genuinely helps me keep this going for the survivors who need hope the most. A huge thanks to everyone leaving comments on YouTube, listening on Spotify or Apple, and to those of you who picked up my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Every review, every share.every message it all helps more survivors discover this podcast. Today’s episode is a powerful one. Daniel Coggins was 28 feet healthy and fresh off a morning run when the room suddenly spun. His limbs began thrashing and his body dropped. What followed was a basilar artery stroke. One of the most catastrophic types there is. His wife, his faith and early decision from a nurse practitionerquite literally saved his life. If you’ve ever had symptoms that no one took seriously or felt like your stroke didn’t look like a stroke, this episode will really speak to you. Let’s get into it. Daniel Coggins, welcome to the podcast.Daniel Coggins (01:13)Thanks so much, Bill. It’s great to be with you.Bill Gasiamis (01:15)Whatwas a normal day like for you before stroke?Daniel Coggins (01:19)Yeah, so before I had my stroke, I had my stroke in July of 2023 and I was 28 years old at the time. And before my stroke, I was a pretty active individual. My wife and I, we enjoyed kind of long distance fitness activities. So we would, we had done a couple triathlons about three to four months before my stroke. had done half marathon running. ⁓Yes, we really enjoyed fitness activities. We were big hikers. ⁓ These are all kind of free time activities. And then, you know, I had a job, so I worked prior to the stroke. But yeah, average day was, you know, somewhat active for the most part, at least on a weekly basis. And those were some of the activities that we did.Bill Gasiamis (02:12)Sounds like that was a bit of the passion, you guys walking triathlons, climbing probably ⁓ all sorts of things by the sound of it.Daniel Coggins (02:21)But yeah, we’ve always enjoyed those. We enjoy going to the national parks and hiking trips. That’s generally how we kind of fashion and organize vacations that we’ve taken over the years. ⁓ So that’s always been one of our favorite things to do.Bill Gasiamis (02:37)What did you believe about your health back then?Daniel Coggins (02:40)You know, if you’d asked me, I would have thought I’m pretty healthy, 28 years old. You know, I wouldn’t say I was like a health nut, if you will, but I was healthy for all intents and purposes and felt like I was doing the right things, you know, eating pretty right, pretty right. And exercise, taking care

Post-Stroke Fatigue: Living With Exhaustion That Family Doesn’t UnderstandWhen you meet someone who has had a stroke, you expect to see something. A limp. A drooped smile. A visible clue.What you often can’t see is the one thing that shapes their entire recovery: post-stroke fatigue.For survivors like David Willick, fatigue wasn’t just tiredness — it was a complete rewiring of how his brain operated. And because nothing looked “wrong” from the outside, the exhaustion was misunderstood, dismissed, or invisible to everyone around him.This is the part of stroke recovery that many people never talk about. But for countless survivors, it becomes the most life-altering part of the journey.What Post-Stroke Fatigue Really Feels LikeIn the first weeks after his ischemic stroke, David slept for 44 out of 48 hours. Twice.Not because he wanted to. Not because he was lazy. But because his brain was fighting to rewire itself at a level no one else could feel.Post-stroke fatigue isn’t physical tiredness. It’s neuro-fatigue — the deep brain exhaustion that follows even the simplest task.For David, driving for ten minutes meant sleeping for hours. A restaurant meal became overwhelming within 30 minutes. Noise, light, background conversations — all of it flooded his brain faster than it could process.Survivors often say:“I look normal, but I’m exhausted inside.”And that’s exactly what makes post-stroke fatigue so frustrating. People don’t see it, so they don’t understand it.Why Post-Stroke Fatigue HappensAfter a stroke, the brain becomes like a construction site. Damaged pathways collapse. New ones must be built. Old ones must be rerouted. Simple tasks suddenly require manual mode instead of the automatic brain patterns that existed before.David described driving after stroke like this:“I had to consciously think about braking.”“If I brake too softly, I’ll hit the truck ahead.”“If I brake too hard, I’ll get hit from behind.”“Where’s the noise coming from?”“Why is the windshield so bright?”That’s one minute of mental processing… for something he had done automatically for decades.This is what drains survivors. Not weakness — but the intense cognitive load of rebuilding pathways.The Part Survivors Struggle to ExplainOne of the hardest parts of David’s recovery was convincing others he wasn’t alright.“I looked normal,” he said, “but I was struggling more than ever.”Post-stroke fatigue is invisible. You can’t X-ray it. You can’t bandage it. You can’t show someone what light sensitivity feels like or what it’s like to suddenly forget where you parked your car.When fatigue shows up, it looks like:turning down invitationsleaving a restaurant earlyneeding another napfeeling overwhelmed in a shopping centrestruggling to keep up with conversationscancelling plans last minuteTo friends and family, it can look like disinterest. To survivors, it feels like survival.One of the best things you can say to a survivor is:“Whatever you’re feeling is valid… and I believe you.”The Non-Linear Reality of RecoveryEvery stroke survivor eventually discovers this: Recovery is not a straight line.David described it as a long-term stock market chart — trending upward, but filled with unpredictable rises and drops.Two good days in a row don’t guarantee a third. A setback doesn’t erase progress. Your brain is always working, always rewiring, always adapting.And fatigue can flare for reasons no one can pinpoint:overstimulationweatherstresssleep changesdoing too much the day beforemental loademotional overwhelmYou can be “fine” one moment and overwhelmed the next.This is the reality survivors live with. And it doesn’t mean they’re failing. It means their brain is healing.How David Rebuilt His Energy and IdentityDavid didn’t just rebuild strength. He rebuilt himself.Here are the strategies that helped him navigate post-stroke fatigue and regain stability in his life:1. Journaling the Little WinsDavid tracked his improvements daily. Not because he felt optimistic — but because depression and mental spirals made progress hard to see.Reviewing weekly entries became proof that he was improving, even when he couldn’t see it in the moment.“When I felt discouraged, I looked back at the journal and saw how much better I was than the week before.” — David2. Respecting the Brain’s Need for RestHe learned to respond to fatigue, not fight it.Early on, if his brain said sleep, he slept. If fatigue hit while walking, his wife spotted it instantly. If his voice changed — softer, heavier — it became a signal that the day needed to slow down.Rest wasn’t weakness. Rest was medicine.3. Gradual Return to WorkDavid went from:6 hours per weekto 12to 20to 30slowly back to full-timeAt 20 hours per week, he almost quit — the fatigue was brutal. But pushing in measured doses expanded his “ceiling” a little at a time.This part of his recovery became one of the biggest catalysts for growth.4. Redefining SuccessBefore the stroke, success for David was high performance, global work, and climbing the corporate ladder.After the stroke?Success became:peacehealthfamilymeaningful workmentoring the next generationliving with purposeThat shift transformed everything.Advice for Survivors Facing Post-Stroke FatigueDavid’s message is simple and powerful:“It’s going to be okay.”You may not return to the person you were before — but you can grow into someone wiser, more self-aware, and more grounded.Here’s what he wants every survivor to know:Recovery is possible.Fatigue doesn’t mean failure.You can improve for years.Rest is part of rehabilitation, not the opposite of it.Don’t compare your recovery to anyone else’s.Track your progress — your future self will thank you.Your mindset shapes every part of your healing.And perhaps most importantly:“You’re allowed to say no. You’re allowed to protect your energy.”If You Love Someone Who’s Recovering From Stroke…Understand that:They’re not faking the exhaustion.They’re not being dramatic.They’re not “overreacting.”They’re not trying to avoid you.They’re trying to survive a neurological crash you can’t see.Ask them gently:“What do you need right now?” “How can I make today easier for you?” “Do you need rest?”Support doesn’t fix fatigue, but it makes the journey human.Next Steps for Your Own RecoveryIf you’re dealing with fatigue, overwhelm, sensory overload or hidden deficits, I want you to know something:You’re not alone — and recovery doesn’t end after rehab.Here are two resources that can help:My book: The Unexpected Way That a Stroke Became the Best Thing That Happened — a practical guide to post-traumatic growth after stroke recoveryafterstroke.com/bookPatreon: patreon.com/recoveryafterstrokeThere’s a path forward. There’s hope. And your energy will rebuild — one small step at a time.David Willick on Life with Invisible Fatigue After StrokePost-stroke fatigue can feel impossible to explain. David’s story reveals the hidden exhaustion behind recovery and how hope slowly returns.Support The Recovery After Stroke Podcast on PatreonBanksia Tech Links:InstagramFacebookWebsiteHighlights:00:00 Introduction and Acknowledgments06:37 The Discovery of PFO and Its Implications09:20 The Day of the Stroke11:16 Emergency Response and Delays17:00 Initial Reactions and Miscommunication25:23 Post-Stroke Fatigue and Recovery Challenges27:28 Sensory Overload and Sensitivity31:35 Emotional and Physical Challenges37:01 The Journey of Recovery41:13 The Impact of Memory Loss48:10 Shifting Perspectives on Life51:50 The Importance of Mentorship01:00:14 Encouragement for New Survivors01:11:46 Conclusion and ReflectionsTranscript:Introduction and AcknowledgmentsBill Gasiamis (00:00)Before we get into today’s interview, I want to say thank you to everyone on Patreon who supports this show. You’re the reason I can keep creating this content after more than 10 years of doing it on my own. Your support helps cover hosting costs and keeps these conversations alive for the survivors out there who desperately need hope, clarity and community. I also want to take a moment to give a shout out to everyone who comments on YouTube, leaves reviews on Spotify or Apple, has bought the bookor simply tunes in without skipping the ads. You are helping stroke survivors feel less alone and that matters. Now today’s episode is a powerful one. I’m speaking with David Willick who experienced an ischemic stroke caused by a PFO, a hidden heart condition he never knew he had. What makes David’s story so important is that you can’t see the sensory overload, the extreme fatigue and the invisible deficits that shape his recovery.If you’ve ever felt misunderstood because you look fine on the outside, but your brain tells a different story, this episode will resonate deeply. Let’s get into it. David Willick, welcome to the podcast.David Willick (01:11)I’m glad to be here. Thank you, Bill.Bill Gasiamis (01:13)David, what did a normal day look like for you before stroke?David Willick (01:17)Well, I had a global role in an internationally ⁓ recognized company. And I actually reported ⁓ into Australia from Canada. So I used to call some of my days bookend days because they would begin at 4.30, 5 o’clock in the morning and go for a few hours and then calm down a little bit.and I would do my day job with my local people in my own time zone. And then right about 4.30, five o’clock in the evening, Australia would wake up and it would get super busy again well into the evening. And that was my day.Bill Gasiamis (02:02)Wow.David Willick (02:02)managing a large department and with lots of direct reports. So it was good, it was fun, but I thought it was Superman, I could do it all.Bill Gasiamis (02:20)And you probably did do it all for a little while.David Willick (02:23)for a little while.Bill Gasiamis (02:25)What industry was in?David Willick (02:29)It was in the electronics industry.Bill Gasiamis (02:34)So then the 4.30 start, was that just to get you going for the day? What was the 4.30 in

When life is full of business meetings, celebrations, and long weeks that blur into long weekends, it’s easy to ignore the quiet signals your body sends. For Jason Hellyer, a real estate professional who prided himself on working hard and playing harder, those signals became impossible to ignore the night he experienced an ischemic stroke.A Lifetime of Overwork and OverindulgenceFor decades, Jason ran successful property and finance franchises across Queensland. He thrived on achievement, 90-hour weeks, long nights, and the social rituals of beer, smokes, and mateship. Like many Australians, he believed success meant constant motion. “I lived a life of pleasure, worked hard, played hard,” he told me. “It was the Aussie way.”Behind the scenes, his blood pressure regularly climbed above 210/110, but he brushed it off. “I felt normal,” he said. “No headaches, no warnings. That was just an ordinary day for me.”The Night Everything ChangedAfter an evening out with his wife, Jason tried to get out of bed and couldn’t. His right arm went limp, his speech slurred, and his face drooped. His wife, having watched her own mother experience a stroke two years earlier, recognised the signs immediately. Within ten minutes, she had him in the car and on the way to Sunshine Coast University Hospital.Those minutes saved his life.Doctors confirmed an ischemic stroke, caused by a blockage restricting blood flow to the brain. Jason’s business instincts kicked in: stay calm, accept the problem, and act. “Panicking wouldn’t help,” he said. “I just thought, what’s the best way to deal with this?”Acceptance, Then ActionMany stroke survivors describe denial. Jason took a different path. “I knew instantly everything had changed. I’d never drink again. Never smoke again. That decision was made within half an hour.”That instant acceptance became the foundation of his recovery. He channelled the same focus once spent on business into his health, taking every recommendation seriously, and leaning on his wife’s calm guidance. “Business teaches you: if there’s a problem, face it. Don’t pretend it’s not there.”From Frustration to ProgressThe first weeks were filled with frustration, facial droop, weakness on his right side, and slurred speech. A self-described “constant singer,” Jason struggled most with losing his voice. “I couldn’t sing in the car or around the house. My wife always said, ‘If you’re singing, you’re happy.’ I felt like I’d lost part of my identity.”Through steady physiotherapy, speech practice, and daily walks, strength and clarity returned. The droop faded. His words grew sharp again. The business owner who once ran at 100 mph was learning to slow down, and in doing so, he started to heal.The Power of Lifestyle ChangeThe stroke stripped Jason’s life down to essentials. What remained became sacred: his family, health, and peace of mind. He quit alcohol and cigarettes immediately, lost 24 kilograms, and developed a daily routine around movement and mindfulness.His mornings now begin before sunrise, cycling, stretching, or walking instead of nursing a hangover. He describes his new clarity as “crystal-clear focus, every day.”“I used to think I was sharp at work. But I was foggy. I didn’t know what clear felt like until I stopped drinking.”“It’s probably the best thing that ever happened to me because it made me change.” — Jason HellyerDiscovering Purpose Beyond WorkAfter years in real estate, Jason now works in the lifestyle and retirement sector, helping others plan peaceful futures, an irony not lost on him. He and his wife recently bought a small farm near Dubbo, where they’re renovating a 110-year-old cottage. Their goal: a slower, healthier life surrounded by nature.“It’s about choosing lifestyle over labels. I don’t care what car I drive anymore. I care about mornings, quiet, and the people I love.”Paddling the Murray and Reclaiming Self-BeliefOnce Jason’s physical strength returned, he began testing his limits again, but this time for meaning, not ego. He started cycling: 10 kilometres, then 25, then 50. Eventually, he completed a 700 km ride through the Pyrenees on the Camino de Santiago. The challenge reignited his belief in what was possible.That led to an even bigger dream – paddling the entire length of the Murray River, Australia’s longest. Alone and self-sufficient, Jason joined a short list of only 500-odd people to complete the journey. “It was my apology to my past self,” he said. “I wanted to prove I was capable and grateful to still be here.”Family, Faith, and the Gift of ClarityJason’s six children were his anchor. The stroke made him see that being a father wasn’t just about providing; it was about presence. “When it happened, I realised I’d have traded everything I owned just to have them in the room with me,” he said.Today, he and his wife share early mornings, simple meals, and long conversations, things they used to rush past. “We used to chase what doesn’t matter,” he reflects. “Now, it’s peace over prestige.”Jason’s Message to Stroke SurvivorsWhen asked what advice he’d give someone newly diagnosed, Jason didn’t hesitate: “Choose the right mindset. It’s easy to feel defeated, but recovery starts with small goals one at a time. Recognise when you’re slipping, talk yourself around, and remember why you’re doing it.”For some, that might mean physiotherapy milestones. For others, simply walking an extra block. Each step matters.Key TakeawaysAcceptance beats denial: Facing reality early gives recovery momentum.Lifestyle matters: Quitting alcohol, losing weight, and staying active can reshape outcomes.Mindset drives healing: A problem-solving attitude turns fear into focus.Purpose sustains growth: Transformation lasts when it’s anchored in gratitude and family.Resources MentionedGet The Unexpected Way That a Stroke Became the Best Thing That Happened — Bill’s book on finding post-traumatic growth after strokeJoin the Recovery After Stroke Patreon community for survivor support, Q&As, and coaching accessSponsor AcknowledgmentBefore we wrap up, a huge thank-you to Banksia Tech, proud distributors of the Hanson Rehab Glove by Syrebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it.Final ThoughtsJason Hellyer’s story isn’t about loss; it’s about rediscovery. His stroke forced a hard reset, stripping away noise until only what mattered remained. Through discipline, humility, and purpose, he shows that overcoming ischemic stroke through lifestyle change isn’t just possible – it can open the door to a richer, calmer life.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.Jason Hellyer on Finding Strength and Clarity After an Ischemic StrokeAfter an ischemic stroke, Jason Hellyer transformed his life — quitting alcohol, losing weight, and finding peace through change.Highlights:00:00 Jason Hellyer’s Lifestyle Before Stroke06:21 The Impact of Stroke on Jason’s Life13:47 Acceptance in an Instant26:24 Losing My Voice, Losing Myself35:37 A Reality Check That Redefined What Matters45:21 Overcoming Ischemic Stroke52:37 Choosing the Right Mindset: Small Steps, Big Recovery56:18 Finding Strength, Joy, and a New Identity After StrokeTranscript:Jason Hellyer’s Lifestyle Before StrokeBill Gasiamis 0:00 Before we dive into today’s inspiring story, I just want to thank everyone who has taken a moment to make this show possible. To all our Patreon supporters, your contributions now cover some of the hosting costs after more than 10 years of doing this solo, and to helping me keep producing content for stroke survivors who need guidance and hope. To everyone tuning in on Spotify, YouTube, Apple podcasts, thank you for commenting, reviewing and sharing, and to those of you who picked up my book The Unexpected Way That A Stroke Became The Best Thing That Happened.Bill Gasiamis 0:32 You’re helping spread the message of post stroke growth now a big thank you also goes out to Banksia tech, proud distributors of the Hanson rehab glove right here by cerebo. This glove helps stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, you’ll hear more about it later in this episode. All right, my guest today is Jason Hellyer, a Queensland real estate professional who built his life around work weekends and plenty of beers, until one night, everything changed.Bill Gasiamis 1:04 Jason suffered an ischemic stroke that turned his entire world upside down. What followed was a total lifestyle transformation. He quit drinking and smoking overnight, lost 24 kilos and discovered a new sense of purpose. He’s living proof that sometimes the biggest setbacks can become the star of something better. Let’s jump in. Jason Hellyer. Welcome to the podcast.Jason Hellyer 1:29 Thanks for having me, Bill.Bill Gasiamis 1:31 G’day, mate.Jason Hellyer 1:33 G’day.Bill Gasiamis 1:34 I love it. Another Aussie. Tell me a little bit about what life was like before stroke.Jason Hellyer 1:42 I lived a life of pleasure, worked hard, played hard. So I Yeah, it was worked in the property industry. So it was always a, you know, the grind Monday to Friday, and on weekends, it was play up time, so many a beer and a celebration had often and for decades. So it was a, not a smart way to live, but it’s how it was, and that was part of the, I suppose, the year we grew up in. It’s just how we did it. You know, it was just worked during the week of play out on the weekends. And I said I got a gold medal in that dude.Bill Gasiamis 2:24 That’s not too bad. I mean, if you can get a gold medal, but always in peak performance sort of sports, you need to know when to get out.Jason Hellyer 2:36 That’s right, yeah. And I didn’t know no first one there, last to leave, always.Bill Gasiamis 2:41 So what was your role? What type of r

Carolyn J. Routh Stroke Recovery Journey: Overcoming Fear After StrokeWhen a series of crushing headaches brought Carolyn J. Routh to the hospital, she thought it was just another battle in her long fight with Type 1 diabetes. But what looked like migraines was something far more serious — a venous sinus thrombosis stroke waiting to strike.On Thanksgiving morning in 2003, while lying in a hospital bed surrounded by doctors, A Stroke No One Saw ComingFor weeks, Carolyn had been in and out of doctors’ offices looking for answers. Her MRI had come back clear, and everyone believed she was fine. But her instincts told her something was wrong. “The pain was unbearable,” she remembers. “It wasn’t a normal headache — it felt like my head was going to explode.”When she suddenly lost her speech, everything shifted. “In my mind I knew what I wanted to say, but all that came out was gibberish.” She was transferred to a larger hospital, where she would finally discover what had been missed — a blood clot the size of a pinky finger sitting in her brain.By the time the doctors realized it, the stroke had already begun.When Life Stops Without WarningThe clot had caused a venous sinus thrombosis — a rare but dangerous form of stroke that blocks blood flow in the veins of the brain. The damage left Carolyn unable to speak and paralyzed down her right side.“I could hear and understand everything,” she says, “but I couldn’t make anyone understand me. I just gave up. I thought, this is it — I’m done.”It’s a thought many survivors have when they first come face to face with the unknown. You can feel the life you once knew slipping away. And yet, even when everything seems lost, something inside keeps fighting — sometimes quietly, sometimes fiercely — to come back.Relearning EverythingWhen Carolyn finally woke up, the doctors had warned her husband, Daniel, that she might not remember anything. But as soon as she saw him, she burst into tears and said his name.That moment marked the beginning of her recovery.Her speech came back first, followed by the slow, painstaking process of walking again. “Before I left the hospital, I told myself I would do everything they said I couldn’t,” she laughs. “It took me an hour to button my shirt and zip my pants — but I did it.”Therapy became her new normal. Her right hand wouldn’t cooperate at first, and she had to consciously think about every single movement. But through persistence and sheer determination, she not only regained her strength — she found herself again.“I may have to walk slower, but I can walk. That’s all that matters.”The Fear That Never Fully LeavesEven after the body begins to heal, fear often lingers. For Carolyn, the mental recovery was just as hard as the physical. “Every headache terrified me,” she admits. “Every little twitch, every off day — I’d think, is this another stroke?”That’s the part most people don’t see: the constant vigilance, the second-guessing, the worry that history might repeat itself.Overcoming fear after stroke isn’t about pretending it doesn’t exist — it’s about learning to live with it. Carolyn found strength in acknowledging her fears and talking about them openly with Daniel.“I’ve learned to tell him when something feels off,” she says. “That way, if something ever happens again, he knows what to look for.”That communication — and her willingness to face fear head-on — became one of her greatest tools for recovery.From Survival to GratitudeToday, Carolyn calls herself “a walking, talking miracle.” She’s grateful for every moment she gets — even the hard ones.“I used to say, ‘I hate my life,’ when things went wrong,” she admits. “But not anymore. I realized I don’t hate my life. I love my life. I just hate the tough moments sometimes — and that’s okay.”That simple shift in language — from hopelessness to gratitude — transformed her recovery. She stopped seeing her stroke as the end of her story and began viewing it as a new beginning.“Find your happy,” she says. “Some days it’s harder than others, but there’s always something to be grateful for.”The Power of SupportThroughout her recovery, Carolyn’s husband, Daniel, became her anchor. He pushed her when she needed it and caught her when she fell — figuratively and literally.“There were days I’d get so mad at him for pushing me,” she laughs. “But I know now, he was doing it because he believed in me even when I didn’t.”For many stroke survivors, that kind of support — from partners, family, friends, or even an online community — can make the difference between giving up and growing stronger.If you don’t have that support around you yet, find it. Connect with other survivors. Join a group. Talk to someone who understands. You don’t have to do recovery alone.A New Chapter of CourageCarolyn’s story is one of resilience, but also of realism. Recovery isn’t quick or easy. There are moments of fear, grief, and frustration — but also joy, laughter, and gratitude.Every day is a balancing act between fear and faith, exhaustion and persistence, setbacks and victories.Carolyn continues to travel, share her music, and live life fully — proof that recovery isn’t about getting back to who you were, but becoming someone even stronger than before.If You’re Struggling With Fear After StrokeFear after stroke is normal. But it doesn’t have to control you. Here are a few ideas that helped Carolyn — and may help you too:Acknowledge it: Fear thrives in silence. Talking about it breaks its grip.Track your triggers: Notice what causes anxiety — fatigue, pain, certain thoughts — and share that with your doctor.Stay connected: Isolation feeds fear; community dissolves it.Focus on gratitude: Each small victory matters — and gratitude fuels hope.Remember your why: Like Carolyn, find your reason to keep going. It could be your family, your friends, your dreams — or simply life itself.You’re Not AloneIf you’ve survived a stroke, you’ve already proven your strength. Recovery isn’t about being fearless — it’s about moving forward despite fear.Carolyn’s journey reminds us that even when life stops without warning, it can restart with purpose. Want more stories like Carolyn’s? Read The Unexpected Way That a Stroke Became the Best Thing That Happened — a book that helps you find meaning and direction after stroke. Join our community on Patreon: patreon.com/recoveryafterstroke You’ll gain access to survivor Q&As, behind-the-scenes insights, and one-on-one guidance to help you move forward.Carolyn J. Routh: Finding Strength and Hope After StrokeCarolyn J. Routh’s story shows how strength, hope, and love can guide you through fear and toward recovery after stroke.Support The Recovery After Stroke Podcast on PatreonCarolyn’s Socials:InstagramTiktokWebsiteHighlights:00:00 Carolyn J. Routh’s Introduction and Background02:24 The Day of the Stroke07:23 Immediate Aftermath and Recovery13:30 Challenges and Deficits Post-Stroke25:06 Emotional and Mental Impact32:42 Bill: Navigating New Battles After Stroke Recovery41:58 Life After Stroke and Band Activities54:32 Advice for Stroke Survivors1:03:21 Final Thoughts and Contact InformationTranscript:Carolyn J. Routh’s Introduction and BackgroundBill Gasiamis 0:00 Hey there. It’s bill here before we jump in a quick thank you to everyone who’s been supporting the show on Patreon. Your help covers some of the costs and keeps this Recovery After Stroke Podcast going after more than 10 years of me doing this solo and a big shout out to Banksia Tech, proud supporters of this episode and distributors of the Hanson rehab glove by cerebro. It’s designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years into it, and you’ll hear more about this later in the episode.Bill Gasiamis 0:33 Today’s guest is Carolyn J. Routh, who had a venous sinus thrombosis stroke at just 34 she lost her speech, her right side movement, and for a moment, her confidence. This episode is about overcoming fear after stroke, and how Carolyn found her way back to strength, gratitude and purpose. So grab a tea or coffee, settle in and let’s get into it. Carolyn Routh, welcome to the podcast.Carolyn Routh 0:57 Thank you for having me. This is going to be great.Bill Gasiamis 1:00 It certainly is. Tell me a little bit about what was life like before stroke?Carolyn Routh 1:06 Pretty normal. I guess. I grew up in a family business. My grandparents started a restaurant in 1946 so I grew up in the back of the restaurant and worked there. Always wanted to be a musician. And finally, in 2003 Well, 2001 let me back up. My husband, Daniel, and I met. He’s the guitar player, and we started new blue, and we haven’t looked back since. We’ve enjoyed playing music.Carolyn Routh 1:31 And I had two strokes my my two strokes right after we started new blue. So everything was great. Up until that point, the band was going great. We were both enjoying what we did. I was just loving life, and then the strokes that set us back a little bit.Bill Gasiamis 1:54 I have a feeling that new Blue was a country band.Carolyn Routh 1:59 We played blue grass, and we do a little bit of country here and there. We even throw some rock tunes in, because Daniel and I both had a rock and roll background, so we had to do a little bit of that just to satisfy what we came from.Bill Gasiamis 2:12 How old were you guys when the band got started?Carolyn Routh 2:14 I was 34, and let’s see, 34 Daniel would have been 25 he’s nine years younger than I am.The Day of the StrokeBill Gasiamis 2:24 Okay, I like it, my wife’s four years older than me. And, you know, even she got the ah, you go for the younger ones. And it’s like, wow. Age is really, you know, it’s really not that relevant, in my opinion. And as long as the two people are in it for the same reason, and everyone’s on board for the same reason, then that’s cool, right? And that reason for me would be love, right?Carolyn Routh 2:52 Yes, sir, absolutely.

Erectile Dysfunction After Stroke: One Survivor’s Courageous Truth About Intimacy and Bowel Control When Anshul Bhadwaj collapsed at his gym in Delhi at just 27 years old, he thought his life was ending. The thunderclap headache, the dizziness, the vomiting he was certain he was having a heart attack. What he didn’t know was that his brain was bleeding, and the hemorrhagic stroke he was experiencing would challenge not just his ability to walk, but his sense of manhood, dignity, and identity. What Anshul shares in this conversation is what most stroke survivors won’t talk about: the loss of erectile function, the inability to control his bowels and bladder, and the profound shame that came with both. But his story isn’t just about loss, it’s about the courage to speak openly about these taboo topics, the journey back to dignity, and the mission to ensure others don’t suffer in silence. The Stroke No One Saw Coming Anshul was living the demanding life of a political journalist in India long hours, intense deadlines, and relentless pressure from his news channel manager. The stress was so extreme that even when he was hospitalized for hypertension in 2023, his manager told him to bring his laptop to the hospital and work from his bed. “Life of a journalist in India is very stressful,” Anshul explains. “It looks good from the outside, but not good from the inside.” That unmanaged hypertension, blood pressure exceeding 180/86 despite medication, was a ticking time bomb. On February 27, 2025, while working out at the gym, Anshul felt a sensation behind his brain, followed by severe dizziness. Within moments, he collapsed. Because stroke awareness in India is remarkably low, no one at the gym, including Anshul himself, recognized what was happening. He thought it was a heart attack. Even when a friend drove him home and his father rushed him to a chemist, they were given electrolytes for what they assumed was low blood pressure. It wasn’t until hours later, when his sister noticed he was having seizures, that the family finally took him to the hospital for a CT scan. The results were devastating: a brain hemorrhage. One junior doctor even said within Anshul’s earshot, “He’s going to die soon.” The Loss That No One Talks About After emergency angiography and coiling to stop the bleeding, Anshul survived. But survival came with challenges that went far beyond the left-sided paresis that left him unable to walk or use his dominant hand. “I lost my manhood at that time,” Anshul shares, his voice steady but vulnerable. “I’m sharing this for the first time.” Erectile Dysfunction After Stroke: The Silent Struggle For approximately one month after his stroke, Anshul experienced complete erectile dysfunction. As a 27-year-old single man, the psychological impact was crushing. “I used to think, what will happen in the future? Nobody will marry me. Nobody will accept me,” he recalls. “I was thinking I was not a man now.” The shame was so profound that he couldn’t share this with his family or doctors. In Indian culture, discussing sexual dysfunction carries immense stigma; people judge, people assume you’re “less of a man.” But what Anshul eventually discovered through his own online research was that erectile dysfunction after stroke is a common neurological symptom, not a permanent condition. As his brain healed and his testosterone levels recovered, his erectile function gradually returned over the course of several weeks. “I want people to know about this. This is not a shame thing. If something like this can happen, people need to accept it. This is happening to them too.” — Anshul Bhadwaj Bowel Control After Stroke: The Reality of Lost Dignity Perhaps even more challenging than the erectile dysfunction was the complete loss of bowel and bladder control. For the entire time Anshul was hospitalized for 35 days, he was unable to control when or where he would urinate or defecate. “I used to pee in the hospital bed only,” he explains. “I was wearing diapers. I would vomit everywhere. I couldn’t control anything.” What made this experience even more traumatic was the response from some of the hospital nursing staff. Rather than showing compassion for a neurological symptom, some nurses expressed frustration and even mocked him. “They used to ask me, ‘Why don’t you tell us to take you to the washroom? Why are you doing this in the bed? You’re wasting our time,'” Anshul recalls. “I used to tell them, ‘I can’t control it. I don’t know why I’m doing this. I want to control it, but I can’t.'” This lack of understanding, even among medical professionals, highlights how little awareness exists around the full spectrum of stroke symptoms, particularly those that affect intimate bodily functions. The good news: Like his erectile function, Anshul’s bowel and bladder control gradually improved after returning home and beginning physiotherapy. Within a month of leaving the hospital, he no longer needed diapers and could independently use the bathroom. The Psychological Recovery: From Hiding to Healing The physical challenges were only part of Anshul’s journey. The psychological impact of losing these fundamental aspects of bodily autonomy sent him into a dark period of shame and fear. When he first started attending physiotherapy sessions, he would wear a traditional Sikh head covering and a face mask, not for COVID protection, but to hide his identity. “I was scared people at my neighborhood would recognize me,” he explains. “They would see how I was walking and start laughing at me. I didn’t want to face people.” The breakthrough came when Anshul began working with a mental health therapist who helped him confront his fears directly. “She told me, ‘These are your fears. This is not reality. Stop wearing this mask. Don’t come again wearing this mask in front of me,'” Anshul remembers. That single month of therapy was transformative. It helped him reclaim his dignity and realize that his worth as a person and as a man wasn’t defined by his temporary physical limitations. What Healthcare Providers Need to Know Anshul’s story reveals critical gaps in stroke care, particularly around: Patient education: Survivors need to be told that erectile dysfunction, incontinence, and other intimate symptoms are common neurological effects, not personal failures Nursing sensitivity: Medical staff require better training on the neurological basis of bowel/bladder dysfunction after brain injury Mental health integration: Psychological support should be standard protocol, not an afterthought Cultural competency: In cultures where discussing sexual health is taboo, providers must create safe spaces for these conversations The Path Forward: Recovery and Advocacy Today, six months post-stroke, Anshul continues to work on his left-hand motor skills and is waiting for medical clearance to return to the gym. His blood pressure, while improved, still requires monitoring. But something more powerful has emerged from his trauma: a mission. “I want to spread stroke awareness in my country to every household,” Anshul declares. “I want to have a stroke awareness series on my news channel. In India, awareness is very low. People don’t even know what stroke is.” His willingness to discuss erectile dysfunction and bowel control openly, topics that carry immense shame in his culture, is already breaking down barriers and helping other survivors realize they’re not alone. For Newly Diagnosed Stroke Survivors Anshul’s message to anyone facing similar challenges is clear and hopeful: “Don’t lose hope. Everything will get back. If you’re not able to walk right now, you will walk. I’m walking. I’m talking properly. Everything will get better with time. Don’t fear anything. Nothing is permanent in this world.” He’s right. Just as seasons change, so too do the challenges of stroke recovery. What feels impossible today, whether it’s walking, regaining sexual function, or controlling your bowels, can improve dramatically with time, proper treatment, and compassionate support. If you’re experiencing erectile dysfunction after stroke, bowel control issues, or any other symptom that leaves you feeling ashamed: you are not alone, you are not less than, and there is hope. Take the Next Step in Your Recovery Read Bill’s Book: Learn how stroke can become an unexpected catalyst for growth → recoveryafterstroke.com/book Join the Recovery After Stroke Community: Get access to exclusive recovery strategies, connect with fellow survivors, and participate in live Q&A sessions → patreon.com/recoveryafterstroke Subscribe to the Podcast: Never miss another story of hope and transformation from stroke survivors around the world. Standard 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. Anshul Bhadwaj: Breaking the Silence on Sexual Health and Dignity After Stroke At 27, Anshul lost more than movement after his stroke. His brave truth about erectile dysfunction & dignity is changing stroke conversations. Anshul’s InstagramSupport The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction and Acknowledgments 01:44 Anshul’s Life Before the Stroke 04:24 The Day of the Stroke 08:31 Seeking Medical Help 18:47 Recovery and Rehabilitation 23:10 Impact on Personal Life and Relationships 29:40 Erectile Dysfunction and Bowel Control Issues 36:32 Positive Changes and Future Goals 40:52 Anshul Bhardwaj: From Fitness Icon to Fighting Spirit 48:57 Spreading Stroke Awareness Across India Transcript: Introduction and Acknowledgments Bill Gasiamis 0:00 Hi everyone, and welcome back. And before we dive into today’s powerful conversation, I want to take a moment to thank some incredible people who make this podcast possible a heart valve. Thank you to everyone who’s been leaving comments on YouTube, your stories, questions

Hyperbaric Oxygen Therapy for Stroke Recovery: Bud Beucher’s Remarkable Return to LifeWhen you’ve spent your life working seven days a week, the idea of slowing down feels impossible until a stroke stops you in your tracks. That’s what happened to Bud Beucher, a resort president from Florida whose drive, optimism, and leadership spirit suddenly met their toughest test yet: an ischemic stroke that left him unable to move or communicate clearly.After 47 days in hospital and months of frustration, Bud found a path that reignited both his health and his personality hyperbaric oxygen therapy (HBOT) through Aviv Clinics.A Life Devoted to Work and ServiceBefore his stroke, Bud was the president of the Michigan Resort and Club in Howey-in-the-Hills, Florida. He managed more than 300 employees, ran a full-service property with golf courses, tennis courts, and restaurants, and thrived on being busy.“I only worked on days that ended in ‘Y,’” Bud laughed. His passion for hospitality wasn’t just a job it was his identity.Then at 64, everything changed.The Day Everything StoppedBud went in for a routine colonoscopy after pausing his blood thinner for atrial fibrillation. A few hours later, his wife found him unresponsive on the couch. He’d had a major ischemic stroke, followed by another two days later.He woke in hospital unable to use his right side and barely able to speak. “I spent 47 days in hospital and came home 80 pounds lighter,” he recalled.What kept him going? The same thing that drove his career his mindset. “My glass has always been half full,” Bud said. “If you’ve got a victim mentality, recovery won’t be nearly as positive or complete.”Discovering Aviv ClinicsMonths into rehab, Bud’s son told him about a program in Florida combining advanced diagnostics, personalised rehabilitation, and hyperbaric oxygen therapy. It was called Aviv Clinics, part of a global network using HBOT to enhance brain and body recovery.Bud and his wife Jane toured the facility and were immediately impressed: world-class equipment, full medical oversight, and measurable before-and-after testing. Unlike traditional rehab, every protocol at Aviv is guided by data MRI and CT scans, cognitive assessments, blood work, and fitness testing before treatment even begins.The 12-Week HBOT ProgramBud enrolled in a 12-week program involving five sessions per week. Each “dive” placed him inside a large multi-person chamber one of the biggest outside the U.S. Navy breathing pure oxygen under pressure to stimulate the body’s natural healing mechanisms.The idea behind HBOT is simple but powerful: increased oxygen levels encourage the brain to build new blood vessels and restore function in areas surrounding the dead tissue caused by stroke.“They told me the damaged tissue in the center of my brain was gone forever but the surrounding areas still had hope,” Bud said.During those sessions, Bud’s wife joined him side-by-side, supporting him through every stage. “If she hadn’t come, I wouldn’t have been as successful,” he said. “It’s exhausting, and having your partner there makes all the difference.”A Holistic Approach to RecoveryAviv Clinics didn’t just focus on oxygen therapy. Their program incorporated nutrition coaching, physical therapy, and psychological support to help clients rebuild from every angle.Bud learned how diet could affect inflammation and recovery, began strength training with a specialist who understood stroke deficits, and embraced the full-time job of healing.“It’s five days a week, twelve weeks straight,” he said. “You can’t miss a session. But when your health is on the line, you’d spend your last penny to get it back.”Results That Spoke for ThemselvesHalfway through the program, Bud noticed subtle but powerful changes. His energy returned. His confidence grew. Conversations that once felt foggy began flowing again.By the end of 12 weeks, his doctors showed comparative brain images revealing increased activity in previously low-functioning areas.More importantly, Bud felt like himself again. “My personality came back to life,” he said. “Before, I’d sit quietly, thinking responses in my head but never saying them. Aviv gave me my voice back and it gave my wife her husband back.”Life After AvivToday, at 68, Bud is stronger and busier than ever but this time, it’s on his own terms. He works out with a personal trainer, travels with Jane, and spends time with their 11 grandchildren.“I’m happy, but I’m not satisfied,” he said. “You only have two choices every day improve or decline. I choose to improve.”Lessons for Other Stroke SurvivorsBud’s story offers more than just medical inspiration it’s a reminder that mindset, persistence, and the right support network are essential for recovery.“Ants don’t give up and neither do I,” Bud said. “There’s no hill too steep for a mountain climber.”Hyperbaric oxygen therapy isn’t a magic fix, but for some survivors like Bud, it’s been a key that unlocked new potential years after their stroke.Watch or Listen to the Full Episode Watch: [YouTube – Bill Gasiamis Channel] Listen: Spotify and Apple Podcasts @ Recovery After StrokeLearn more about Aviv Clinics at aviv-clinics.com and discover Bud’s full journey in this inspiring conversation. For more stories of hope and recovery, explore:The Unexpected Way That a Stroke Became the Best Thing That Happened – BookSupport Recovery After Stroke on PatreonBefore we dive in, a big thank you to Aviv Clinics for sponsoring this episode and for the incredible work they’re doing to support stroke survivors through advanced hyperbaric oxygen therapy.Disclaimer: This blog is for informational purposes only and does not constitute medical advice. Always consult your doctor before making any changes to your health or recovery plan.Hyperbaric Oxygen Therapy Stroke Recovery: How Bud Beucher Reclaimed His Voice and Life with Aviv ClinicsResort president Bud Beucher lost his voice after a stroke, not physically, but mentally. Hyperbaric oxygen therapy helped him speak his mind again.Learn More About Hyperbaric Oxygen Therapy (HBOT)Hyperbaric Oxygen Therapy – Dr. Amir HadannyDr. Shai Efrati on Hyperbaric Oxygen Therapy: A Game-Changer for Stroke RecoveryHyperbaric Oxygen Therapy Improves Stroke DeficitsHighlights:00:00 Introduction and Acknowledgments01:06 Bud Beucher’s Background04:37 Life Before the Stroke09:32 The Stroke and Initial Recovery16:07 Bud Beucher: Remembering Through the Fog of Stroke Recovery24:25 Redefining Purpose After a Lifetime of Work32:19 Hyperbaric Oxygen Therapy and Aviv Clinics45:19 Healing the Brain, One Breath at a Time57:00 Progress and Support During Recovery1:12:22 Post-Recovery Life and Travel1:21:18 Final Thoughts and AdviceTranscript:Introduction and AcknowledgmentsBill Gasiamis 0:00 Before we dive in today’s episode, I want to take a moment to thank the incredible people who make this podcast possible. First, a massive thank you to my Patreon supporters. Your contributions help me cover the costs of hosting, editing and producing this show for 10 years. I did this entirely on my own, but your support allows me to continue bringing these stories of hope and recovery to stroke survivors who need them most. If you’d like to support the podcast, head over to patreon.com/recoveryafterstroke.Bill Gasiamis 0:32 I also want to shout out to those of you who leave comments on YouTube, your insights and encouragement mean the world to me and to other stroke survivors who read them, to everyone who leaves reviews on Spotify and Apple podcasts, thank you for helping others find this show. To those of you who have purchased my book, thank you for supporting this mission and to everyone who watches without skipping the ads. You’re helping this podcast reach more people who need hope now today’s episode is special because it’s sponsored by Aviv clinics.Bud Beucher’s BackgroundBill Gasiamis 1:06 I first learnt about Aviv when I interviewed two of their doctors for the podcast. The links of those interviews will be in the show notes. I wanted to understand how hyperbaric oxygen therapy works and bring that information to you the stroke survivors. Listening, those interviews were so valuable that we’ve come full circle. Aviv is supporting this episode, which allows me to keep creating this content for our community.Bill Gasiamis 1:33 So today, I’m speaking with Bud Beucher, who experienced two ischemic strokes at the age of 64 Bud was the president of a major resort, managing 325 employees, living life at full throttle. After his strokes, he spent 47 days in hospital and lost over 100 pounds. But the most devastating loss wasn’t physical. It was his personality. Bud could speak, but the conversations happening in his head wouldn’t come out, that is until he discovered Aviv clinics and their 12 week hyperbaric oxygen therapy protocol.Bill Gasiamis 2:08 What happened next is a testament to the power of innovative treatment, unwavering mindset and the support of a devoted partner. Let’s dive in. Bud Beucher, welcome to the podcast.Bud Beucher 2:19 Thank you, Bill. I appreciate it being here with you today.Bill Gasiamis 2:23 Likewise. Thank you so much for joining me. I wanted to get a bit of a sense of what life was like for you before stroke.Bud Beucher 2:34 Well, I was the president of Michigan resort and club in Howie and the hills, Florida. I had 325 employees that worked for me, and life was a blur. I had four children, and I was 64 years old when I had the stroke, and as my dad would say, I was busier than a one handed paper hanger, and I only worked in days that ended in why.Bill Gasiamis 3:03 And Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Sunday.Bud Beucher 3:11 Only those that ended in why. My wife is very supportive, and we’ve had a great life together. And you know it my job wasn’t work. It was my passion. And so we we have a hotel, or we had a hotel, we sold it in March or December of 22 and so it was a

Vivistim: One Stroke Survivor’s Experience – And Why Spasticity MattersWhen recovery gets complicated, honest stories help us navigate the grey. In this episode, John Cross shares his lived experience with Vivistim (paired VNS) and why a less-talked-about barrier, spasticity,  shaped what he could (and couldn’t) do in therapy.The Day Everything ChangedJohn’s story starts with something ordinary: a bad bout of COVID and relentless coughing. Soon after, he collapsed while getting ready for bed. He later learned he’d likely had a carotid artery dissection, a tear in the artery that can lead to stroke. The swelling in his brain was so severe he needed a decompressive craniectomy. Over a year later, he underwent cranioplasty to “put his head back together.” In between were weeks of hospitals, rehab transfers, infections, and a heavy protective helmet that strained his neck.Life After Stroke: Identity Shifts and Small WinsBefore stroke, John worked long days as a mechanical designer and application engineer problem-solving was his world. After stroke, everything changed: left-sided weakness, hypersensitivity, time distortion, and the emotional rollercoaster many survivors know well. Work disappeared after a corporate acquisition; insurance hurdles stacked up. Still, he kept searching for options: hyperbaric oxygen, medications, and eventually Vivistim.What Vivistim Is (and Isn’t)This isn’t medical advice or a recommendation; it’s John’s account. Vivistim is a paired vagus nerve stimulation device: a small implant connected to the vagus nerve. The core idea is timing brief stimulation while you perform a task, to help the brain strengthen relevant neural pathways. John’s sessions included therapist activation and a magnet he could use himself. He didn’t always feel the “throat tickle” many describe. One day, he surprised himself by pinching a Post-it between thumb and finger, tiny, yes, but meaningful.The Spasticity FactorHere’s the critical insight from John’s story: spasticity can limit functional gains.He describes his left arm as “locked up” so tight that even in zero-gravity setups, he felt like he was fighting a 15-pound weight. Without the ability to move the limb through useful ranges, pairing stimulation with specific movements was harder. He explored options like Botox (costly with his insurance) and became curious about longer-lasting approaches like cryo-neurolysis still hard to access in his region.This doesn’t mean Vivistim can’t help someone with spasticity; it means spasticity may need its own plan so therapy, any therapy, has room to work.The Emotional Load No One Warned Us AboutJohn speaks candidly about fear, clinginess, and anger outbursts that felt out of character. He wished someone had prepared him for the emotional and cognitive shifts after discharge. In my experience, that gap is common. Hospital teams do an incredible job stabilizing people, but the “what now?” conversation often happens elsewhere, and often too late.If that’s you: you’re not broken and you’re not alone. Emotional changes can be part of brain injury, not a moral failure. Support (counselling, peer groups, community) helps.Advocacy, Patience, and the Power of CommunityJohn’s engineering mindset both helped and hurt. He wanted to “solve” recovery quickly until he realized recovery demands experiments, patience, and feedback. He kept reaching out, kept learning, and kept trying. That’s hero work.“Small wins count. Pinching a Post-it mattered because it meant my brain could still learn.”—John CrossPractical Takeaways (Not Medical Advice)If spasticity is a roadblock, make it a priority topic with your clinicians. Strength, range, and fine control often need spasticity addressed first.Pair therapy with purpose. Whether you use a device or not, rehearsing goal-based movements with repetition is powerful.Track tiny wins. A weekly note of “what moved, what felt different” builds momentum.Get emotional support. Recovery is physical, mental, and emotional. Consider a psychologist or peer group.Be your own advocate. Ask questions, seek options, and document outcomes.If you want a lived-experience roadmap for the long haul, my book might help: The Unexpected Way That a Stroke Became the Best Thing That HappenedAnd if this show supports you, consider joining the community: Patreon.com/recoveryafterstroke“Spasticity doesn’t mean progress is impossible. It means the plan needs adjusting.”SponsorA thank you to Banksia Tech, distributors of the Hanson rehab glove by Syrebo, designed to help stroke survivors work on hand function at home, whether you’re early in recovery or years in. You’ll hear more during the episode.Final ThoughtJohn’s story isn’t about a miracle device. It’s about nuance: understanding that tools, timing, spasticity, emotions, and support all intertwine. Recovery isn’t linear, but small, honest wins stack up.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.John Cross on Spasticity, Vivistim, and Finding Small Wins After StrokeJohn shares his Vivistim experience and how spasticity shaped rehab, an honest look at small wins, setbacks, and hope in stroke recovery.Highlights:00:00 John Cross’s Background and Initial Stroke Experience05:03 Jon Cross: The Night Everything Changed16:48 Hospital Stay and Initial Diagnosis18:27 Rehabilitation and Vagus Nerve Stimulation (VNS)21:21 Jon Cross: Rewiring Recovery with Vivistim35:29 Small Wins and Hope with the Vivistim Journey49:23 Emotional and Psychological Impact52:08 Adapting to Life Post-Stroke54:42 Support Systems and Future GoalsTranscript:John Cross’s Background and Initial Stroke ExperienceBill Gasiamis 0:00 Before we jump into today’s conversation, I want to take a moment to thank everyone who contributes to making this show possible. My Patreon supporters, YouTube commenters, Apple podcast reviewers, and everyone who’s brought my book The Unexpected Way That A Stroke Became The Best Thing That Happened, after doing this for more than 10 years on my own.Bill Gasiamis 0:20 Your support now helps me create this content for other survivors who need hope, inspiration and real world insight into life after stroke and a special thank you to Banksia tech, proud distributors of the Hanson rehab glove by cerebo, designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the track, and I’ll tell you more about them later in the episode. Today’s guest is John Cross, and he’s got a fascinating story to share. John experienced a carotid artery dissection that led to a major stroke and required a craniotomy.Bill Gasiamis 0:58 He’s now living with a vivistam implant, a Vagus Nerve Stimulation device, and he talks candidly about what it’s really like, how it works during rehab, and the challenges that spasticity still brings. This is not medical advice or a product endorsement. It’s one man’s lived experience, and the reminder the recovery is rarely linear. Let’s dive in. John Cross. Welcome to the podcast. Thank you. Give me a bit of a rundown about what John Cross used to get up to before the stroke.Jon Cross 1:34 I went to work every day, 1214, hours a day. Difficult work. Worked as much as I could. I enjoyed my job, and unfortunately, since the stroke work, decided they didn’t need me anymore, so I don’t do it anymore.Bill Gasiamis 1:53 What kind of work did you do, John?Jon Cross 1:57 Well, the bulk of it was a mechanical designer with AutoCAD. But they my title was, they called us in a sales Application Engineer, which I’ve always likened to Inside Sales Support. Really, they just like to put a big, fancy title on it.Bill Gasiamis 2:16 Sales Support, yep.Jon Cross 2:21 So I’ve for 30 years, I’ve designed clean rooms, like for pharmaceutical and high tech stuff.Bill Gasiamis 2:32 Rooms where there’s no or small chance of cross contamination or something like that.Jon Cross 2:39 Exactly.Bill Gasiamis 2:42 And what about family life? What was that like? What was your situation?Jon Cross 2:47 My family’s awesome. I wouldn’t be here without them. So I’ve got boy and a girl, both adults and my wonderful wife.Bill Gasiamis 2:59 So 14 – 15, hours. Was that just part of what was required, what was necessary? Or is that because you loved job so much.Jon Cross 3:09 A combination, and just couldn’t get it all done because I covered multiple bases where the bulk of my job was to put a, I don’t know if everybody understands what a submittal package is, but in a quick definition, it’s gather all the information from the customer and repackage it so that they understand that you know what they want, and this is what they were going to give.Bill Gasiamis 3:39 And what did you do? Go ahead, and then you would.Jon Cross 3:42 Sorry, no. Then I also designed the product too, so I covered multiple bases, but downtime, I kept the family cars going and just tinkered around the garage.Bill Gasiamis 3:59 And what were you focused on, anything in particular back then? Was there anything that you were sort of straight, aiming towards or striving for.Jon Cross 4:10 Just basic life stuff, you know, provide for the family? And unfortunately, that was right at the height of covid, and that’s what nailed me.Bill Gasiamis 4:21 I see what was the sense that you had about your health? Did you feel like you were in a in a good way physically?Jon Cross 4:29 Well, I knew I could be better, but it wasn’t terrible, like I could run up a flight of stairs and not be winded, but it couldn’t ride my bike up a hill and do it very well. So any other is room for improvement.Bill Gasiamis 4:53 And how old were you about the time?Jon Cross 4:55 My stroke was? I was 57.The Night Everything ChangedBill Gasiamis 5:03 And now, do you have a sense of what happened on the day? Do you have a recollection of how your day started

Hand Therapy After Stroke: How Small Steps Lead to Big Wins Introduction When a stroke changes the way your hand works, it’s not just about movement — it’s about your independence. Hand therapy after stroke isn’t a quick fix. It’s a journey of patience, persistence, and celebrating the little wins that add up to life-changing progress. In this episode of the Recovery After Stroke podcast, I sat down with occupational therapist Effie Sibson, co-founder of Banksia Tech, to explore what hand therapy really looks like, why the word “plateau” doesn’t belong in recovery, and how survivors can keep making progress even years down the track. What Is Hand Therapy After Stroke? Hand therapy is more than just exercises for your fingers and wrist. Effie explains that occupational therapy looks at how the hand fits into everyday life: Can you dress yourself again? Can you cook a meal? Can you hold your baby or grandchild? Can you return to work or hobbies? While physiotherapy often focuses on muscles, balance, and walking, occupational therapy connects those improvements to real-world tasks. Hand therapy after stroke bridges the gap between physical recovery and meaningful independence. The Science: Neuroplasticity and “Learned Non-Use” Effie reminds us that recovery isn’t only about regaining what was lost — sometimes it’s about learning new ways to do things. That’s where neuroplasticity comes in. Neuroplasticity is the brain’s ability to rewire itself. The more you use your affected hand, the stronger those pathways become. But the opposite is also true. If you avoid using your weaker hand and rely only on your stronger one, your brain actually shrinks its “map” for that affected hand. This is called learned non-use or maladaptive plasticity. That’s why even tiny, daily attempts with your weaker hand are so important. As Effie puts it: “Recovery is not something that happens to you. Recovery is something you do for yourself.” “Every little attempt you make with your affected hand keeps that part of your brain alive and engaged.” – Effie Sibson Busting the Plateau Myth Many survivors hear the word “plateau” — often from an insurance company or during discharge from hospital. It’s a word that can steal hope. Effie doesn’t use it at all in her clinic. The truth? Recovery never stops. Progress may slow, but it doesn’t disappear. If things feel flat, it’s often a sign to change the approach, not give up. As one of Effie’s clients wisely said: “Don’t change the goal — change the plan.” Celebrating Small Wins Hand therapy is a long road, and it always feels hard. That’s by design — challenge drives neuroplasticity. But that doesn’t mean progress isn’t happening. Effie encourages survivors to celebrate small wins: Holding a cup without spilling Buttoning one shirt sleeve Picking up a coin Cooking a simple meal These milestones matter because your brain thrives on positive reinforcement. Recording short videos of your progress can show just how far you’ve come — even when it feels slow day to day. The Role of Family and Friends Recovery isn’t just physical; it’s emotional and relational. Family and friends play a crucial role by: Noticing small improvements you might overlook Providing encouragement and patience Learning from therapists how to support home exercises without “over-helping” As Effie explains, sometimes the hardest thing is watching a loved one struggle. But allowing survivors to attempt tasks — even imperfectly — builds long-term independence. Overcoming Perfectionism Perfectionism can trip up recovery. Survivors who push too hard for 100% performance often burn out. Effie’s advice? Aim for progress, not perfection. Sometimes 85% is good enough if it means you can participate in the activity that matters to you. Hand therapy isn’t about flawless movement — it’s about reclaiming your life. Tools That Support Hand Therapy at Home One of the challenges survivors face is access. Traveling hours to therapy can be exhausting and expensive. That’s why Effie and her team at Banksia Tech brought the Syrebo Hanson rehab glove to Australia. This lightweight robotic glove helps stroke survivors practice hand movements at home, every day, without waiting for an appointment. It’s NDIS fundable in Australia, and international orders are available too. It’s the kind of device I wish I’d had in my early recovery — something simple, affordable, and effective to help me keep practicing daily. Key Takeaways for Survivors Use your hand every day — even tiny efforts matter. Celebrate small wins — they keep your brain motivated. Reject the plateau myth — recovery can continue for years. Involve your family — they notice progress you might miss. Consider home-based tools — independence grows with daily practice. Conclusion Hand therapy after stroke is a journey of persistence, adaptation, and hope. Whether you’re days or decades into recovery, every effort counts. As Effie Sibson says, “A little bit every day — and celebrate the small wins.” 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. Effie Sibson on Hand Therapy, Recovery, and Hope After Stroke Occupational therapist Effie Sibson shares why hand therapy is about small daily wins, not plateaus, and how survivors can keep moving forward. Banksia Tech Elevate Neuro Rehab LinkedIn Transcript Will Be Available Soon… The post Effie Sibson on Hand Therapy, Recovery, and Hope After Stroke appeared first on Recovery After Stroke.

After Stroke Recovery: Terry Gilstead’s Story of Perseverance and Patience When you hear the phrase after stroke recovery, what comes to mind? For some, it means the early days in hospital learning to walk again. For others, it’s the first year at home trying to rebuild daily routines. But for Terry Gilstead, recovery didn’t end after a year, five years, or even ten. More than three decades later, she’s still finding new ways to heal, adapt, and live with strength. Terry’s story reminds us that recovery is not a finish line. It’s a lifelong journey of resilience, patience, and unexpected transformation. A Stroke During Pregnancy At just 37 years old, Terry was six and a half months pregnant when she suffered a stroke caused by antiphospholipid syndrome — a condition that thickens the blood. She had been active, full of energy, and working toward her master’s degree in administration. Then, everything changed. Her stroke left her with paralysis on her right side and aphasia, making it nearly impossible to speak. In the midst of ICU stays, near-death experiences, and even early labor scares, she had to navigate the unthinkable — protecting her unborn son while fighting for her own life. Despite the odds, Terry delivered a healthy baby boy in December 1991. But she returned to rehab without him, facing weeks of separation, pain, and the reality of life with new deficits. Finding Hope in the Hardest Moments Like many survivors, Terry battled depression. She felt trapped in a body that no longer worked as before. Speech was painfully slow, and movement on her right side seemed impossible. She even admitted to God that she was ready to die. Yet, her family — her husband, daughters, and newborn son — became powerful reasons to keep going. “Every time someone told me I couldn’t do something, I said, ‘Watch me.’” This defiant spirit became a turning point. Returning to Teaching with Aphasia Just eight months after her stroke, Terry returned to her classroom. She relied on scripts, lesson notes, and creative teaching strategies. She integrated her rehab into her teaching — having students move their arms, practice cross-body activities, and engage with material in new ways. Though her voice often gave out by midday, her persistence inspired both students and colleagues. She proved that after stroke recovery isn’t just about regaining what you lost — it’s about creating new ways to thrive. A Seven-Year Spiritual Struggle Before her stroke, Terry described herself as spiritual — more Zen than religious, open to many traditions. Afterward, she struggled with anger toward God. For seven years, she couldn’t reconcile why she had survived only to live with deficits. But with time, her perspective shifted. Recovery softened her outlook, allowing her to reconnect with faith and gratitude. That spiritual healing became as important as the physical therapy. Recovery That Never Ends Today, more than 32 years later, Terry is still in recovery. Balance issues have returned as she nears 70, but instead of giving up, she goes back to rehab. She uses exercise balls, resistance bands, and stair training to stay strong. Her story underscores a vital truth: recovery doesn’t end. Progress is possible at every stage — even decades later. “Don’t ever think you won’t get something back. Recovery continues — you just have to find your way to it.” – Terry Gilstead Key Lessons from Terry’s Journey Patience is powerful. Terry discovered a patience she never had before.   Adaptation creates opportunity. Scripts, creative teaching, and therapy at home helped her re-enter life.   Community matters. Her husband, children, and colleagues made recovery possible.   Spiritual healing takes time. It’s normal to wrestle with anger, grief, and acceptance.   Recovery never stops. Even 32 years later, she’s still proving what’s possible.   Takeaway After stroke recovery isn’t a destination. It’s a lifelong process of growth, healing, and adaptation. Terry Gilstead’s story shows us that no matter how much time has passed, there’s always room for progress. If you’re on this journey, remember: you’re not alone, and it’s never too late to reclaim something new. For more stories of resilience, check out my book The Unexpected Way That a Stroke Became the Best Thing That Happened. Standard 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. After Stroke Recovery: Terry Gilstead’s Story of Perseverance and Patience After stroke recovery never really ends. Terry Gilstead’s journey proves that patience and resilience can transform life after a stroke. Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Terri Gilstad’s Introduction and Background04:44 Out-of-Body to 27 Years On: Terri’s Long Stroke Journey10:38 Near-Death: Terri’s ICU Revelation18:40 The Stroke and Initial Hospitalization22:39 Returning to Normalcy and Teaching38:50 Long-Term Recovery and Personal Growth44:36 Impact and Purpose of Sharing Her Story Transcript: Terri Gilstad’s Introduction – After Stroke Recovery Bill Gasiamis 0:00 Hi, it’s Bill from Recovery After Stroke. Before we get into today’s episode, I wanted to thank everyone who’s been supporting the show. To those of you on Patreon. Your contributions help me cover the cost of producing this podcast after more than 10 years of doing it on my own. If you’re able to support the show in this way too, you can go to patreon.com/recoveryafterstroke to find out more. Bill Gasiamis 0:23 Thanks also to the people leaving reviews on Apple podcasts and Spotify the YouTube commenters who keep the conversation alive, and everyone who has bought my book The unexpected way that a stroke became the best thing that happened, even those who stick with the ads you’re helping keep this show going for other survivors who need hope. Today’s guest is Terri Gilstad. Bill Gasiamis 0:45 At just 37 and six months pregnant, she had a stroke that left her paralyzed on her right side and unable to speak. What followed was not only the birth of her son, but also decades of continuous recovery, a story of patience, persistence and her unforgettable watch me spirit and before we dive in, a big thank you to Banksia tech for supporting this episode. They’re the proud distributors of the Hanson rehab glove. Bill Gasiamis 1:11 So Rebo, this glove is designed to help stroke survivors improve hand function at home, whether you’re early in recovery or years down the road, you’ll hear more about it later in the episode. Terri Gilstad, welcome to the podcast. Terri Gilstad 1:25 Thank you very much. I’m glad to be here. Bill Gasiamis 1:28 Tell me, what was life like before stroke for you? Terri Gilstad 1:33 Okay, I don’t know if you can see it, but this page that I’m showing you is it’s a page of pictures that was of me before the stroke, and I was just in a new relationship with my current husband, and I was really big at skiing and doing things with my daughters. I was really good. As far as I had real big drive. I was type A personality. I really felt that I was ready to get into my masters. Bill Gasiamis 2:17 So you wanted to get your Masters in what field? Terri Gilstad 2:20 I was going to get my masters in administration, and liked to I was a person that liked to do really different things, and I was the first person in my school that was working with cooperative groups, and I had all My cooperative groups set up in my classroom, and it was working out really, really well. So I went home and was feeling like I had had a headache, a migraine headache all day long. Terri Gilstad 2:54 And I was sitting there thinking, Okay, this is the time that I get to get my daughters down, everything will be fine, or whatever, and then I would go to bed and wake up in the morning with the headache gone. And it kind of didn’t work out like. Bill Gasiamis 3:12 So what was causing the headache? Terri Gilstad 3:15 The headache was caused by my blood thickening up. I have anti phospholipid syndrome, which I never knew anything about until after the stroke and the the the way it worked, was something that it always gave me a migraine headache, and probably a lot of just my I had really blurry vision and had like wavy lines in front of my vision or whatever. Bill Gasiamis 3:51 So how little were the children you were 37 how little were the children. Terri Gilstad 3:56 The children in my class were eight, eight years old? What about your children? My children, my oldest was almost, I think she was nine, and my middle daughter was, I think eight. They’re 14 and a half months apart, so, but that was the ages of my children. So then I woke up in the middle of the night thinking, you know, something’s not right about, you know, all this stuff. And I said, you know, and I woke up my husband, and I said, Would you please call my doctor and also call an ambulance? Because I think I better go in with this. Out-of-Body to 27 Years On: Terri’s Long Stroke Journey Bill Gasiamis 4:44 It has been 27 years, yes, and you’re still kind of living with the effects, the impact, the deficits that stroke created. Mm, hmm. On the day of the stroke, what were your first thoughts when you were diagnosed as having had a stroke? Did you go through that process in your mind? Terri Gilstad 5:10 I did not know that I had a stroke. I just I was I remember going to the emergency room, being taken over to a CAT scan, having a CAT scan done, nothing was unusual about it, because I was, you know, behaving like everybody else would behave, I guess. And then they took me back into the emergency room, and my doctor was there, and he said, you know, he talked with the other people that were there and reading the scan. And they said it doesn’t appear that she’s gone through anything, which I know I was one of those people that never thought about a stroke