Recovery After Stroke

Recovery After Stroke
  • 4.8 (93)
  • EDUCATION
  • UPDATED WEEKLY

A Community And Podcast For Stroke Survivors And Carers

  1. FEB 9

    Stroke Effects: The Hidden Deficits Jake Faced After a Hemorrhagic Stroke

    Stroke Effects: What a Hemorrhagic Stroke Did to Jake Stroke effects aren’t always obvious. Some show up immediately. Others arrive quietly, long after the hospital discharge papers are signed. For Jake, the stroke effects didn’t end when his life was saved; they began there. Four months after a hemorrhagic stroke, Jake can walk, talk, think clearly, and hold a conversation that’s thoughtful, articulate, and reflective. To someone passing him in the street, he might look “lucky.” But stroke effects don’t ask for permission to be visible. They live beneath the surface, shaping movement, sensation, pain, identity, and recovery in ways few people prepare you for. This is what stroke did to Jake. The Stroke Effects That Came Without Warning Before his stroke, Jake’s life was full and demanding. A husband. A father of four. An administrator coordinating drivers and operations. Active. Fit. Always moving toward the next opportunity. But in hindsight, the stroke effects were quietly signaling their arrival. Jake experienced severe headaches with a rapid onset. Nausea. Vomiting. Visual disturbances. At the time, they were dismissed as migraines. His blood pressure had been flagged as “pre-high” years earlier while living overseas, but after returning to Canada, he found himself without a regular doctor in an overloaded medical system. These were early stroke effects masquerading as manageable inconveniences. When the hemorrhagic stroke finally hit, it did so decisively, affecting the right side of his body, disrupting speech, movement, sensation, and cognition all at once. What Stroke Did to His Body One of the most misunderstood stroke effects is how specific and strange the deficits can be. Jake didn’t just “lose strength.” He lost motor planning. When he tried to write the letter T, his brain sent the wrong instruction. Instead of a straight downward line, his hand looped as if writing an L. The muscles worked. The intention was there. The signal was wrong. To retrain that connection, he didn’t practice ten times. He practiced thousands. This is one of the realities of stroke effects: recovery isn’t about effort alone, it’s about repetition at a scale most rehab programs don’t explain clearly enough. Post-Stroke Pain: The Stroke Effect No One Warns You About If there’s one stroke effect that dominates Jake’s day-to-day experience, it’s pain. Not soreness. Not discomfort. Neuropathic pain. Jake describes it as: Burning sensations Tingling Tightness, like plastic strapping wrapped around his limbs At its worst, a “12 out of 10” pain, like being tased while his hand is on fire This kind of post-stroke pain often resets overnight. One morning, he wakes up and feels almost normal. The next, the pain returns without warning, severe enough to stop him in his tracks. This is a stroke effect that confuses survivors and clinicians alike because it doesn’t follow logic, effort, or consistency. It simply exists. And for many survivors, it’s one of the hardest stroke effects to live with. The Non-Linear Reality of Stroke Effects Stroke recovery doesn’t move forward in a straight line. Jake learned this quickly. One week brings noticeable gains. The next feels like a regression. Then progress returns quietly, unexpectedly. This non-linear pattern is itself a stroke effect. Early on, these fluctuations feel frightening. Survivors worry they’re “going backwards.” But over time, patterns emerge. Rest days aren’t failures. They’re part of recovery. Silent healing days matter just as much as active ones. Understanding this changed how Jake viewed his recovery and how he measured progress. Identity Loss: An Overlooked Stroke Effect Some stroke effects don’t show up on scans. Jake wasn’t defined by his job, but work still mattered. Structure mattered. Contribution mattered. After the stroke, uncertainty crept in. Would he return to the same role? Could he handle the same responsibility? Should he? Stroke effects often force people to renegotiate identity, not because they want to, but because they must. The question shifts from “What do I do?” to “Who am I now?” For many survivors, this is one of the most emotionally demanding stroke effects of all. Recovery Begins With Action, Not Permission While hospitalized, Jake made a decision. He wouldn’t wait passively. He brought in notebooks. Pencils. Hand grippers. Hair clippers. He practiced shaving, writing, and gripping, no matter how long it took. If writing the alphabet took all day, that was the day’s work. By discharge, his writing had moved from scribbles to cursive. This wasn’t luck. It was intentional engagement with stroke effects, meeting them head-on instead of avoiding them. What Stroke Effects Teach Us Jake’s experience reveals something important: Stroke effects are not just medical outcomes. They are lived realities. They affect: How your body moves How pain shows up How progress feels How identity shifts How hope is tested And yet, understanding stroke effects, naming them, and normalizing them can reduce fear and isolation. That’s why conversations like this matter. You’re Not Alone With These Stroke Effects If you’re early in recovery, you might recognize yourself in Jake’s story. If you’re years in, you might recognize where you’ve been. Either way, stroke effects don’t mean the end of progress. They mean the beginning of a different kind of journey, one that rewards patience, repetition, and perspective. If you want to go deeper into recovery insights, lived experience, and hope-driven guidance: Learn more about the book here: The Unexpected Way That a Stroke Became the Best Thing That Happened Support the podcast and community here: Recovery After Stroke Patreon Final Thought Stroke effects don’t define who you are, but they do shape how you recover. Jake’s story reminds us that recovery isn’t about returning to who you were. It’s about learning how to live fully with what remains and discovering what’s still possible. 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. Living With Stroke Effects You Can’t Always See Jake reveals the stroke effects that remained after the hospital—pain, motor issues, fatigue, and how he’s navigating recovery four months on. Highlights: 00:00 Introduction and Background 05:10 Health Awareness and Signs 16:56 Personal Health Journey and Challenges 23:11 Recovery Process and Emotional Impact 38:28 Attitude Towards Recovery 46:30 Long-Term Recovery and Reflection 55:06 Work and Identity Post-Stroke 01:07:40 Pain Management and Coping Strategies 01:16:16 Community and Shared Experiences Transcript: Introduction and Background Bill Gasiamis (00:00) Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jake, a stroke survivor who is very early in recovery and navigating the reality of what stroke actually does to a person long after the emergency has What makes this conversation so powerful isn’t just the hemorrhagic stroke Jake experienced. It’s how openly he talks about the stroke effects that followed. The pain, the confusion. the nonlinear recovery and the parts of stroke that are hard to explain unless you’ve lived them. I won’t give away Jake’s story that’s his to tell, but I will say this. If you’re early in recovery or you’re trying to make sense of symptoms that don’t quite fit the brochures or discharge notes, there’s a good chance you’ll hear something in Jake’s experience that feels confronting and reassuring at the same time. Now, before we get into the conversation, want to pause for a moment and say this, everything you hear, the interviews, the hosting, the editing exists because listeners like you help keep this podcast going. When you visit patreon.com slash recovery after stroke, you’re supporting my goal of recording a thousand episodes. So no stroke survivor has to ever feel like they’re navigating this 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 recovery after stroke.com slash book. It’s the resource I wished I’d had when I was confused, overwhelmed and trying to understand what stroke had done to my life. all right. Now let’s get into the conversation with Jake. Bill (01:40) Jake Bordeaux, welcome to the podcast. Jake (01:42) Hi Bill, how are you this evening? Bill (01:44) I’m very well my friend. It is morning here. Just gone past 9am. We had a late night last night. We went to the opera and we saw Carmen. Jake (01:57) Hmm. How’s that? Bill (01:59) And for those who haven’t seen it, it’s in French and you have to read the subtitles because it has subtitles. I couldn’t read them because I was just a little too far. So I was squinting the whole night. But it’s a great opera, it was a great show, but we got home late so I’m quite tired. Jake (02:20) I couldn’t imagine that. Luckily I do speak French. So I wouldn’t need the subtitles, but that’s something I was afraid of actually, you know, coming out of the stroke is I was afraid almost that I had forgotten how to speak French or that I’d forgotten how to speak both languages. But luckily I speak ⁓ English and French. Bill (02:40) With a name like Bordeaux, I would definitely expect you to at least have some idea of French. Jake (02:45) Yes, indeed, sir. Half English and half French. I’ve been using that largely to my advantage. I’d been working up here in Northern Ontario with Federal Express. So I was working in administration here and sort of coordinating

    1h 22m

  2. FEB 4

    Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living

    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 Background 01:52 Life Before the Stroke 03:32 The Stroke Experience 11:03 Craniotomy Stroke Recovery Journey 17:09 Adjusting to Life Post-Stroke 28:46 Living Independently After Stroke 35:09 Facing New Challenges: Aneurysms and Uncertainty 42:13 Support Systems: Finding Community After Stroke 47:06 Identity Shift: Life Changes Post-Stroke 58:39 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 lo

    1h 14m

  3. JAN 26

    Heard a Pop in My Head: A Stroke Survivor’s Warning You Shouldn’t Ignore

    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, th

    1h 7m

  4. JAN 19

    Moyamoya Syndrome Stroke Recovery: How Judy Rebuilt Her Life After a “Puff of Smoke” Diagnosis

    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 accou

    1h 11m

  5. JAN 12

    Stem Cell Stroke Recovery: What the Research Says (and What It Doesn’t)

    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.

    16 min

  6. JAN 5

    Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means

    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: Instagram X.COM Facebook LinkedIn YouTube TikTok Vimeo Debra Meyerson X.COM LinkedIn Facebook Instagram Steve: LinkedIn Highlights: 00:00 Introduction and Background 06:11 The Experience of a Stroke: A Slow Fall Off a Cliff 22:45 Navigating Caregiving: Balancing Needs and Support 32:01 Understanding Aphasia: A Spectrum of Experiences 43:05 The Importance of Sadness in Healing 50:08 Finding Purpose Through Advocacy 53:31 Building the Stroke Onward Foundation 57:12 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 ta

    1h 8m

  7. 12/29/2025

    Stroke etanercept injection 18 months on: Andrew’s update after the PESTO trial

    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

    40 min

  8. 12/24/2025

    Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence

    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.

    1h 19m
See All (299)

4.8
out of 5
93 Ratings

About

A Community And Podcast For Stroke Survivors And Carers

Information

  • Creator
    Recovery After Stroke
  • Years Active
    2019 - 2026
  • Episodes
    299
  • Rating
    Clean
  • Show Website
    Recovery After Stroke

You Might Also Like