Recovery After Stroke

Recovery After Stroke
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A Community And Podcast For Stroke Survivors And Carers

  1. 12 hrs ago

    Robert Schmidtbauer – Building a Voice for My Brother

    Aphasia Communication App: How One Brother Gave a Stroke Survivor His Voice Back For four or five hours, Robert Schmidtbauer’s younger brother lay on the floor of their Wisconsin home, unable to get himself up. Robert found him when he got home from a late shift driving cabs. His brother had been drinking that night, but this wasn’t alcohol; it was a stroke, one that would put him in the University of Wisconsin Hospital for three weeks and in rehab for six months. His brother was already living with ataxia, a rare progressive condition that had taken his ability to walk and had begun to affect his speech. The stroke made it dramatically worse. Today, unless you know him well, you’ll understand only 60 to 70 percent of what he says. It’s usually the end of a sentence, the last few words, the part that carries the point that disappears. Robert became the translator. For years, every visitor, every relative, every tradesperson needed him in the room to fill in the blanks. Then he built something better: an aphasia communication app called Larry’s Speakeasy, priced at nine dollars for life, now used by people in 20 countries. When the Speech Problem Has No Official Name One detail of this story will be familiar to many stroke families: Robert’s brother has never been formally diagnosed with aphasia. The doctors attributed his speech difficulties to the combination of ataxia and stroke and left it there. After a year of speech therapy and his own reading, Robert concluded there was “probably some of that in there,”  but no clinician ever gave the problem a name. That matters, because a diagnosis is often the doorway to resources. Without one, nobody hands you a communication aid, a device funding pathway, or even a list of options. Robert’s brother got speech therapy two or three hours a week while it lasted, some practice phrases to take home, and nothing else. The Gap Nobody Warns Stroke Families About Rehab ends. The communication problem doesn’t. When Robert’s brother came home, the brothers developed their own system: Robert would catch 90 percent of a sentence, ask him to repeat the rest up to three times, and then ask him to spell the words letter by letter. That was the system for years. Robert credits his stint teaching English online to students around the world for training his ear to listen closely. But the system only worked when Robert was in the room. The moment that changed everything was ordinary: a new housekeeper came to quote on cleaning, and Robert’s brother, who runs the inside of the house, couldn’t make himself understood on the details. Robert stood in the middle, finishing sentences. He’d felt like a “third wheel” through his brother’s rehab, looking for a way to genuinely help. Standing in that kitchen, he found it. “I had one person on my wing that no one else in the building could understand but me. And even I had a 50% chance of understanding what he really wanted.” — a care facility director, on why a tool like this matters What Is an Aphasia Communication App? An aphasia communication app is software that speaks for a person whose own speech is impaired a modern, affordable form of what clinicians call AAC (augmentative and alternative communication). Larry’s Speakeasy does two things, deliberately kept simple: Type-to-speak. If your hands still work, you type any phrase or sentence, and the app says it out loud. One-tap phrases. For people with limited hand function, pre-made buttons cover emergencies (“I need to go to the bathroom,” “call the doctor”) and everyday phrases hello, goodbye, and a growing list Robert adds to as users suggest them. The market Robert walked into explains why he built his own. At the affordable end, there’s roughly one comparable app at around $13. After that, the next step up starts near $150 and climbs to $7,000–$8,000 for dedicated equipment that requires training and support to operate. Between a cup-of-coffee app and a small car’s worth of hardware, there was almost nothing. Robert priced Larry’s Speakeasy at $8.99 once, for life. “It’s not here for me to get rich off of,” he says. “It’s my brother, and I want it to help.” Built With AI, in Days, by a Retiree Robert is 67, with a background in television and radio rather than software. He’d spent months learning to work with AI tools and, in his words, cussing and swearing at the computer. When the housekeeper moment landed, he posed a different question to the AI: how can I help my brother’s speech?  And had a working version running within about two or three days, refined over the following months. That’s worth pausing on. The tools to solve a real disability problem at kitchen-table scale now exist for people who aren’t programmers. A determined care partner built, tested, and shipped an aphasia communication app from rural Wisconsin no company, no funding, no advertising. Around 260 people across 20 countries have tried it, and it’s listed as a resource on the National Aphasia Association website. More Than an Emergency Button The use cases stretch well beyond the kitchen: Therapy practice. Practice phrases from a speech pathologist can be loaded into the app and drilled at home with or without a partner. Video calls. Open the app in one window and Zoom or FaceTime in another, and a person who can’t speak clearly can hold a conversation with family anywhere in the world. Robert saw his own mother’s isolation in a care facility years ago; this is his answer to it. Care facilities. An iPad on a care cart could let staff understand residents nobody else can and document requests, which protects residents and facilities alike. Where to Find It The app lives at LarrySpeakeasy.com, with a seven-day free trial before the one-time $8.99 purchase. Try it, and if it helps, it helps, as Robert puts it; there’s no push. Stories like Robert’s are why this podcast exists: ordinary people refusing to accept the gap between what the system provides and what recovery actually needs. If that resonates, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, shares ten tools for recovery and personal transformation drawn from my own stroke journey and hundreds of survivor interviews; you’ll find it at https://recoveryafterstroke.com/book. And if this show has helped you, you can support it at https://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. Robert Schmidtbauer – Building a Voice for My Brother (Interview) After a stroke, Robert’s brother lost clear speech and had no tools to cope. So Robert built one: a simple app that speaks for those who can’t. Highlights: 00:00 Introduction – Aphasia Communication App 01:21 Challenges in Communication Post-Stroke 05:17 Stroke Experience and Recovery 12:20 Communication Challenges and Solutions 17:43 Creating Solutions Through AI 18:03 Introducing the Aphasia Communication App 21:13 Expanding Accessibility in Care Facilities 27:14 Final Thoughts and Resources 29:19 Bridging Communication Gaps 30:14 Resources for Stroke Survivors Transcript: Introduction – Aphasia Communication App Robert (00:00) If I ask him three times, I still can’t understand it. Like, spell it for me. You know, so I mean, that’s kind of how we got by until I developed this app. Lacunar Stroke New Research (00:10) Hello, everyone, and welcome to another episode of the Recovery After Stroke Podcast. Before we get into it today, I want to say a massive thank you to all my Patreon supporters and to everyone who supports this podcast. You are the reason this show keeps going. And I appreciate every single one of you. If you’d like to help keep these episodes coming, you can support the show at patreon.com/slash recovery after stroke. And if you’re looking for tools to guide you, On your own recovery, my book, The Unexpected Way that a Stroke Became, the best thing that happened, is available at recovery after stroke.com slash book. Now, today’s episode is a little different. My guest is Robert Schmidtbauer. And Robert is not a stroke survivor, he’s a care partner. His younger brother was already living with ataxia, a rare condition affecting his muscles and speech, when a stroke six or seven years ago made communication between the two brothers harder than it had ever been. In this conversation, we talk about what it’s like to be the person who translates for someone you love, what happens when rehab ends and the communication problem doesn’t? And what Robert decided to do about it. Something that might genuinely help other families in the same situation. Challenges in Communication Post-Stroke BIll Gasiamis (01:30) Robert Schmidtbauer welcome to the podcast. Robert (01:33) Thank BIll Gasiamis (01:33) can you give me a little bit of a rundown on you and your relationship with your brother before he had a stroke? Robert (01:42) My brother’s nine years younger than I am, so he’s 56, no, 58 now. And we’ve been living here. He originally got out of high school, went to travel school in Minneapolis, Minnesota, and lived there for a number of years. He has a taxia, and he moved home. to my mother’s house. Let’s see, we’ve been here 16 years now in this house living together. And he moved home about 20 years ago. Not quite, maybe like 18, 18 and a half. The ataxia took away his ability to walk. I’m not sure if you’re familiar with ataxia, but it’s kind of like in the muscular dystrophy realm. And it’s very, very, very rare. he attacks your muscles. depending on the seriousness and the kind, there’s like 20 different kinds. You probably wind up dying from it because it slowly affects your muscles. And the first things to go usually are your ex

    33 min

  2. 6 days ago

    She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell

    Walking After Stroke: What Your PT Knows That Your Doctor Doesn’t A doctor walked in, ran a reflex test, and told the patient they would never walk again. That same day, a physical therapist from Dr. Kory Langwell’s team arrived. The patient was in tears. And then they walked 70 feet. “I hope you go back and tell that doctor,” Kory said, “that they missed that.” Dr. Kory Langwell is a Doctor of Physical Therapy with over 15 years of experience. He runs a mobile home therapy practice across Southern California, and now coaches stroke survivors worldwide through his virtual program at Unlimited Potential Physical Therapy. In episode 410 of the Recovery After Stroke podcast, Kory broke down the realities of walking after stroke what’s actually possible, where the system fails survivors, and what a good physical therapist knows that most doctors don’t. The Moment the System Stops For most stroke survivors in the United States, recovery starts with intensity. In the hospital, you might receive three hours of therapy a day. Then you go home. Within weeks, that drops to thirty minutes, once or twice a week. “Insurance doesn’t know when your brain stops recovering,” Kory says. “Therapy ending doesn’t mean progress ends.” The problem is that for many survivors, the message lands the other way around. When the funding stops, the belief follows: that recovery is over, that this is where they plateau, that there’s nothing left to do. That belief, more than the stroke itself, can stall everything that comes next. The Plateau Is Not a Full Stop One of the most damaging phrases in stroke recovery is “you’ve plateaued.” It implies that the brain has reached its ceiling, that whatever function you have now is what you’ll have forever. Kory pushes back hard on this. “I’ve seen progress years, decades, 10 to 20 years after a stroke. Arms, hands, legs, walking ability. People just get fed up and stop looking for resources.” What a plateau usually means is that the current approach has stopped working, not that progress itself is impossible. The clinical response isn’t to discharge the patient. It’s to audit what they’re doing and change something. Different exercises, different load, different feedback. Reassess in six weeks. See what moves. Walking After Stroke: Why More Isn’t Always Better Walking after stroke is where survivors often get their first taste of both independence and confusion. The instinct, and it’s a good one, is to walk more. Further, longer, more often. But Kory draws an important distinction between the acute stage and everything that comes after. In the early weeks post-stroke, more isn’t always better. If someone can walk five steps, pushing them to twenty-five on back-to-back days may overtax the neurological system rather than rebuild it. Fatigue compounds quickly. Quality collapses. And when quality collapses, the brain reinforces the wrong patterns. “I’d rather have somebody walk 50 feet really well than 150 feet terribly,” Kory says. Visual feedback changes this completely. When survivors watch themselves walk in a mirror, or on a phone recording, they often see something very different from what they feel. Bill Gasiamis described exactly this: convinced his running gait was dangerous, he watched the footage and found it was far better than he’d thought. The problem wasn’t the movement. It was the feedback. Once a survivor moves into the chronic stage months or years post-stroke, the calculus shifts. Walking remains one of the best exercises available. Kory also recommends walking backwards in a safe environment like a hallway or near a kitchen sink: it challenges balance, engages the brain differently, and creates new neurological input. Why Falls Happen – And What Actually Prevents Them Falls after stroke aren’t random. They follow a pattern. The clinical term is proprioception: the brain’s sense of where the body’s joints and limbs are in space. After a stroke, this system is often disrupted. Survivors may not feel their foot on the ground, or may not register that a leg isn’t bearing weight the way it needs to. Add a divided attention task carrying a plate, thinking about turning off the television, reaching for something, and the risk multiplies immediately. Bill described this directly: he’d made a sandwich, sat down, finished eating, and went to stand up. His attention was on getting the plate to the sink without dropping it. His left leg wasn’t registered as being on the floor. He fell before he’d taken a step. The countermeasure is simple: stop, feel the floor, confirm the leg is active before moving, then carry the plate. Step by step, not simultaneously. Foot Drop, AFOs, and Electrical Stimulation Foot drop, where the muscles that lift the front of the foot are weakened or uncoordinated, is one of the most common walking challenges after stroke. Many survivors are placed in an AFO (ankle foot orthosis) to manage it. Kory’s view on AFOs is measured: they’re a tool, not a sentence. Whether to wear one, when, and whether to eventually stop using one depends entirely on the individual. “Take it off every once in a while if you’re in a safe environment,” Kory advises. “That gives new input to the brain a chance for things to improve.” Electrical stimulation is another tool worth exploring. Kory recommends starting with an affordable unit available on Amazon for around $40 to test whether the technique produces results before investing in higher-end systems. You can find Kory’s recommended unit at linktr.ee/unlimitedpotentialpt. The “Life Athlete” Mindset Kory calls his stroke survivor clients “life athletes.” Not because they run marathons or lift heavy, but because athlete thinking produces athlete results. Athletes track. They audit their approach. They celebrate small gains. They adjust when progress slows. And they don’t let one bad assessment from one clinician define what they believe is possible. “If somebody told you you’d never walk again, you can take that feedback and use it as motivation,” Kory says. “Or you can let it get you down. That’s up to you.” What to Do With a Limiting Prognosis When a doctor says “you’ll never walk again,” it’s rarely cruelty; it’s usually outdated thinking. General practitioners have limited training in neurological rehabilitation. Some are still working from research that concluded recovery stops at six months or a year. That conclusion was drawn from patients who stopped therapy and stopped trying, not from the brain’s actual ceiling. “I just want to leave the door open,” Kory says. The research on neuroplasticity is clear: the brain continues to adapt when given the right challenge, the right environment, and enough time. A prognosis isn’t a prophecy. It’s a snapshot of what one clinician observed on one day. Walking after stroke real, functional, independent walking is possible far longer and far later than most doctors suggest. And sometimes, it happens the same day they said it never would. If this episode has helped you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened shares the tools and mindset that made the difference across his own recovery. If the Recovery After Stroke podcast has been valuable to you, you can support it financially at 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. She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell (Interview) Dr. Kory Langwell on the therapy gap, foot drop, and why the plateau after stroke is a label not a limit. Highlights: 00:00 Introduction – Walking After Stroke 07:24 Insurance and Therapy Limitations 11:22 Supporting Survivors and Caregivers 16:45 Community and Support in Recovery 26:57 The Impact of Electrical Stimulation in Rehabilitation 29:17 Walking: Quality Over Quantity in Recovery 30:25 Understanding the Stages of Recovery 36:39 Navigating the Challenges of Falling Post-Stroke 42:05 Setting Realistic Goals for Recovery 44:46 The Role of Medical Professionals in Rehabilitation Transcript: Introduction – Walking After Stroke Kory Langwell (00:00) So we had a client recently there. Doctor told them they were never gonna walk again. And literally, like they our therapist showed up, the patient was in tears, and then they walked 70 feet with our therapist. And it was all because it was a doctor that didn’t know them. They did like some reflex testing and said, you’re hyporeflexic, you’re never gonna walk again. And then literally that same day walked 70 feet. I was like, I hope you go back and tell them, BIll Gasiamis video 25, image (00:23) Before we get into today’s conversation, I want to extend a genuine thank you to everyone who supports this show. Whether you’ve joined as a YouTube member, contributed through Patreon, left a review, shared an episode, commented, or picked up a copy of my book, You Are the Reason This Podcast Keeps Going. Today’s guest is Dr. Corey Langwell. A doctor of physical therapy with over 15 years of clinical experience. Corey runs a mobile therapy practice across Southern California and now coaches stroke survivors worldwide through unlimited potential physical therapy, a virtual program built for people who can’t access the in-person care they need. In this conversation, we get into the gap that opens up the moment you leave hospital. While the word plateau might be the most dangerous word in stroke recovery, What physical therapists know about walking after stroke that most doctors do not, and what it actually takes to keep making progress, years or even decades post-stroke. If you’ve ever been told there’s a ceiling on your r

    56 min

  3. 22 June

    Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground

    Falls Prevention After Stroke: What the Latest Research Reveals About Staying Safe and Mobile For many stroke survivors, the fear of falling is a constant companion. It’s there when you get up from the couch, when you navigate the kitchen, when you try to walk further than you did yesterday. That fear is rational, falls after a stroke are common, and their consequences can be serious. But according to Associate Professor Kate Scrivener, a stroke rehabilitation researcher at Macquarie University, that fear doesn’t have to define your recovery. In Episode 409 of the Recovery After Stroke podcast, Kate returns to the show where she first appeared in Episode 257 to discuss her HiWalk walking program and share the results of two major research projects: the published Phase II results of HiWalk, and a new systematic review focused specifically on exercise-based falls prevention after stroke. Who Is Kate Scrivener? Associate Professor Kate Scrivener leads stroke rehabilitation research at Macquarie University in Sydney, Australia. Her work sits at the intersection of real-world clinical practice and rigorous research. She doesn’t just study stroke recovery, she designs and tests the programs that can change it. Kate first appeared on this podcast to talk about HiWalk, a high-dose walking intervention designed to push the limits of what long-term stroke survivors can achieve. Now, with the results published, she’s back to talk about what the data actually showed and what it means for survivors who want to reduce their fall risk. The HiWalk Results: What Happened When 47 Survivors Walked Hard HiWalk was built on a straightforward but ambitious premise: what happens if stroke survivors, who have been living with their disability for years, are given a truly high-dose walking program? Not a gentle weekly session, but 43 hours of structured walking across just three weeks. The Phase II randomized trial enrolled 47 participants and produced results worth paying attention to. Attendance was 91%. Retention was 98%. For a physically demanding trial involving chronic stroke survivors, those numbers are remarkable, and they tell their own story about what survivors are capable of when given a real opportunity. For participants who were not already in active rehabilitation at the time of the trial, walking speed improved by 0.24 metres per second, a clinically significant gain. Self-efficacy, a measure of how confident participants felt in their own ability to walk and function, also improved significantly. The overall group walking speed trend was positive but did not reach statistical significance across the full cohort, partly because HiWalk was a Phase II feasibility trial, designed to test whether the program could be delivered safely and whether participants would complete it. It was not powered to detect large group-wide effects. What it demonstrated is that this kind of high-dose program is feasible, achievable, and produces real gains for the right participants. Why Falls Prevention After Stroke Is Harder Than It Sounds Falls after stroke are not simply a balance problem. They involve fatigue, reduced sensation, spasticity, cognitive changes, and the interaction between all of those things in the unpredictable terrain of daily life. Most stroke survivors are told to be careful. Very few are given a structured, evidence-based program designed specifically to reduce their risk. Kate’s systematic review, published in Clinical Rehabilitation in 2026, searched the global literature for exercise-based trials targeting falls prevention in community-dwelling stroke survivors. Only three trials worldwide met the inclusion criteria. That number alone says something significant. Falls after stroke are widely acknowledged as a major problem. The research base for solving it is thin. Of the three trials identified, exercise trended toward reducing the rate of falls, but the effect on the total number of people who fell was less clear. The standout result came from the FAST trial, which reduced fall rates by 33%. All three qualifying trials were conducted in Australia, raising important questions about whether these findings can be replicated in different healthcare systems with different levels of access to physiotherapy and structured exercise. What This Means for Stroke Survivors Right Now Kate’s research points to two things survivors and their families can act on. First, walking intensity matters. The HiWalk results suggest that long-term survivors who have plateaued in conventional rehabilitation may have more capacity than they or their clinicians assume. High-dose, structured walking appears to produce gains that lower-intensity programs don’t reach. If you’re a survivor who has been told to keep active but hasn’t been given a specific, progressive program, that’s worth a conversation with your physiotherapist. Second, exercise for falls prevention works, but it needs to be the right kind, delivered consistently. Gentle movement is valuable. But the evidence base Kate’s review maps out points toward structured, progressive exercise as the mechanism that shifts fall rates meaningfully. The FAST trial’s 33% reduction didn’t come from telling people to be more careful. It came from changing what they were physically capable of doing. Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, explores the tools and mindset shifts that underpin a recovery built on action rather than waiting. You can find it at recoveryafterstroke.com/book. The Gap Between Research and Practice One of the most important threads in this conversation is the distance between what the research supports and what most survivors actually receive. Kate’s systematic review found only three qualifying trials globally. HiWalk’s feasibility results are published, but the next step, a large-scale Phase III trial, requires funding, time, and institutional will. For survivors, that gap can feel frustrating. The science is pointing in a clear direction. The programs aren’t yet widely available. Kate’s work is part of closing that distance. Listen to the Full Conversation Episode 409 with Associate Professor Kate Scrivener is available on all major podcast platforms, search Recovery After Stroke and on the Recovery After Stroke YouTube channel. If this show has helped you on your recovery journey, you can support it financially at 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. Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground (Interview) Researcher Kate Scrivener on why falls after stroke aren’t inevitable — and what high-dose walking programs can change. Highlights: 00:00 Introduction – Falls Prevention After Stroke 07:04 Effectiveness of Rehabilitation for Non-Therapy Patients 13:01 Falls Risk and Prevention Strategies 20:53 Tailoring Exercise Programs for Individual Needs 26:48 Barriers to Implementing New Treatments 35:23 The Importance of Patient-Centered Research 41:32 Future Directions in Stroke Rehabilitation Transcript: Introduction – Falls Prevention After Stroke BIll Gasiamis (00:00) Well, hello everyone. Welcome to Recovery After Stroke. I’m Bill Garciamas. Today’s guest is someone who has been on the show before, and I’m glad she’s back because the last time we spoke, she was in the middle of a research program that I thought had real potential to change things for long-term stroke survivors. Now the results are in. Associate Professor Kate Scrivener is a stroke rehabilitation researcher at Macquarie University in Sydney, Australia. Her work focuses on what happens to survivors after formal rehabilitation ends, what’s possible, what the research actually supports, and what the gap looks like between current clinical practice and what survivors could be doing. In episode 257, Kate joined me to talk about High Walk, a high-dose walking program she designed for people living with chronic stroke. In this episode, she returns to share the published phase two results of that trial and to discuss her new systemic review on exercise-based false prevention after stroke. That review searched the entire global literature and found just three qualifying trials. That number tells you a lot about where the research is and why conversations like this matter. We cover the high walk data, what 43 hours of walking over three weeks produced in 47 participants, what the fast trial found about reducing fall rates, and what survivors can actually do right now based on the evidence. If you’ve found this podcast useful on your own recovery journey, I’d love for you to pick up a copy of my book. The unexpected way that a stroke became the best thing that happened. You can do that at recoveryafterstroke dot com slash book. It’s the story of my stroke and ten tools that shaped my recovery. And if this show has helped you, you can support it financially at patreon dot com slash recovery after stroke. Every contribution keeps the podcast going. BIll Gasiamis (02:00) Associate Professor Kate Scrivener. Welcome to the podcast. Kate (02:04) Nice to be back, Bill. BIll Gasiamis (02:07) Nice to have you back. Last time you were on, we spoke about a project that you were working on called High Walk, which was at the early stages of the project, was which was about determining whether or not people who did more rehabilitation in a short amount of time, like and a a you’ll tell me exactly what the words are in a minute, whether they were going to benefit from that type of protocol. As far as how that would impact their walking after stroke. and it was in the very early days, it was in the recruitment phase of the project that we spoke about it. We were

    59 min

  4. 19 June

    Can a Mushroom Help Your Brain Heal? The Science Says Maybe

    Lion’s Mane Mushroom and Brain Health: What Four Clinical Trials Actually Found Many stroke survivors and people managing cognitive decline more broadly eventually ask the same question: Is there anything beyond physiotherapy and medication that can actively support brain healing? Not symptom management. Actual repair. Lion’s Mane mushroom (Hericium erinaceus) is one compound that has gathered genuine clinical attention. It is not a cure, the human trial evidence is still limited in scale, and it is not a replacement for the fundamentals of brain health. But the mechanism is unusual, the safety profile is consistently good, and for anyone serious about their brain, the research warrants an honest look. Why Lion’s Mane Is Neurologically Unusual Most supplements that claim to support brain health cannot cross the blood-brain barrier, the tightly regulated membrane that controls what enters the brain. Without crossing it, any direct effect on brain tissue is limited. Lion’s Mane contains two families of bioactive compounds found almost nowhere else in nature. Hericenones come from the fruiting body, the visible mushroom. Erinacines come from the mycelium, the root-like underground network. Both stimulate the production of Nerve Growth Factor (NGF) and Brain-Derived Neurotrophic Factor (BDNF). These are proteins the brain uses to grow new neurons, maintain existing ones, and strengthen the connections between them. Crucially, erinacine A, one of the key mycelium compounds, has been confirmed in preclinical studies to cross the blood-brain barrier. That is not a trivial distinction. It is one of the reasons researchers have taken this mushroom seriously. “These are proteins your brain uses to grow new neurons, maintain existing ones, and build and strengthen the connections between them. They are, in a very real sense, your brain’s repair and maintenance crew.” — Bill Gasiamis What the Human Clinical Trials Found Four published human clinical trials have examined Lion’s Mane. Here is what each found: Mori et al. (2009): In a randomised, double-blind, placebo-controlled trial, 30 older adults with mild cognitive impairment (MCI) took Lion’s Mane supplement or placebo for 16 weeks. The Lion’s Mane group showed significantly better cognitive function scores at weeks 8, 12, and 16. When supplementation stopped, scores declined again within four weeks, suggesting the effect was tied to ongoing intake, not a placebo response. Saitsu et al. (2019): A multicenter RCT tested 12 weeks of oral Lion’s Mane in older adults. Participants in the treatment group showed significant improvement on the Mini-Mental State Examination (MMSE) compared to placebo. No adverse effects were observed. Nagano et al. (2010): A 4-week RCT using Lion’s Mane-enriched cookies found significant reductions in self-reported depression and anxiety in women compared to placebo, suggesting effects extend beyond cognition to mood and emotional regulation, possibly via the gut-brain axis. Docherty et al. (2023): A double-blind pilot study from Northumbria University tested 41 healthy young adults aged 18–45. After a single dose, participants performed significantly faster on the Stroop task, a measure of cognitive processing speed and flexibility. After 28 days, there was a trend toward reduced subjective stress. This was a small study, and results should be interpreted cautiously, but it suggests Lion’s Mane effects are not limited to populations already experiencing cognitive decline. The Stroke-Specific Preclinical Data For stroke survivors, the preclinical research adds another dimension. In a 2014 animal study, erinacine A reduced brain infarct volume by 22–44% in ischemic stroke models (depending on dose), and significantly lowered pro-inflammatory cytokines, including IL-1β, IL-6, and TNF-α markers of the neuroinflammatory cascade that follows stroke. A 2022 study found that erinacine A helps preserve glutamate clearance in the brain after ischemic injury. Excess glutamate is one of the key mechanisms of neuronal death after stroke, so anything that helps regulate it post-injury is clinically relevant. These are animal studies. They do not translate directly to human outcomes. But they provide a biological rationale that supports why clinical researchers are now investigating Lion’s Mane in neurological recovery contexts. What the Research Does Not Yet Tell Us The limitations matter, and any honest assessment must include them. All four human trials are relatively small, none exceeds 100 participants. We do not yet have large-scale, long-term RCTs in stroke survivor populations specifically. The optimal dose, duration, and form (fruiting body vs mycelium vs dual extract) have not been established in human trials. Direct confirmation that erinacines cross the blood-brain barrier in humans rather than in animal models does not yet exist. Bill says it directly in the video: “The human trial data is still relatively limited in scale. We need larger, longer trials.” Practical Questions to Raise with Your Doctor If you are considering Lion’s Mane supplementation, the following questions are worth raising with your neurologist or GP: Is it safe alongside my current medications? Theoretical interactions exist with anticoagulants (warfarin, aspirin, clopidogrel) and antidepressants, not confirmed in human trials, but worth disclosing. Anyone on blood thinners following a stroke should have this conversation before starting. What form should I look for? Products should specify standardised hericenone content (fruiting body extract) or erinacine A content (mycelium extract). Products listed only as “mycelial biomass on grain” typically contain very low levels of active compounds and high levels of starch from the growth substrate. If the label does not specify active compound content, treat that as a quality flag. Are there any trials I could join? ClinicalTrials.gov lists current recruiting studies for Hericium erinaceus and cognitive function worth checking if you are interested in contributing to the evidence base. More information: https://recoveryafterstroke.com/book | Support the podcast: https://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. The post Can a Mushroom Help Your Brain Heal? The Science Says Maybe appeared first on Recovery After Stroke.

    8 min

  5. 15 June

    The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan

    Stroke Impact on Family: When the Caregiver Becomes the Patient There is a particular kind of reckoning that happens when the person who has spent their life caring for others suddenly needs care themselves. For Kathy Cunningham, that moment arrived without warning. Kathy worked in healthcare for years, a field built on attending to others in their most vulnerable moments. When stroke entered her life, she was confronted with something her training had never quite prepared her for: accepting help. In Episode 408 of Recovery After Stroke, Kathy sits down with her sons Sean and Paul Monahan to talk openly about the stroke’s impact on the family, not as a concept, but as a lived experience shared across three people who navigated it together. When the Expert Becomes the Patient Healthcare professionals develop a particular relationship with illness. They understand the biology, know the pathways, and can often anticipate the trajectory of a condition before the patient has fully processed what is happening. That knowledge is a professional asset. In a personal medical crisis, it can also become a barrier. Kathy’s background meant she understood exactly what a stroke meant and what recovery would require. What it did not prepare her for was being on the receiving end: needing to ask, needing to wait, needing to trust others to do the things she had always done herself. Her sons Sean and Paul were part of that support system, two adult men who stepped into a caregiving role they had never anticipated, in a household that was already carrying more than most. A Household Navigating Stroke More Than Once What makes Kathy’s story particularly complex is the context it unfolded in. Her household had already been touched by stroke before her own diagnosis, meaning Sean and Paul weren’t approaching caregiving as something entirely new. They were deepening an already demanding commitment. The stroke impact on family is rarely a single event. It accumulates. Each new development shifts the balance of who does what, who needs what, and who is available to give it. For Sean and Paul, supporting their mother meant learning to hold space for her recovery while managing the weight of their own experience alongside it. That is the part of stroke that rarely makes it into clinical documentation: the sustained psychological and logistical load that falls on the people closest to the survivor, day after day, over months and years. The Challenge of Accepting Help One of the most consistent patterns across stroke recovery is the difficulty survivors have in accepting help, and it is amplified, not softened, when the survivor has a background in caring for others. The implicit logic runs: I know how this works. I should be able to manage this. Kathy speaks to this directly in the episode. The process of allowing her sons to step forward to organise, to accompany, to simply be present and available required a different kind of skill than anything her career had developed. It required recognising that accepting care is not evidence of incapacity. It is its own form of strength. For families supporting a stroke survivor, this distinction matters. When a survivor resists help, it is not always stubbornness. Often, it is someone navigating an identity that has been fundamentally disrupted by what happened to them. What the Family Perspective Adds Sean and Paul’s presence in this conversation shifts something in the usual stroke recovery narrative. Most episode conversations centre on the survivor. This one deliberately includes the view from the other side, the sons who watched, worried, helped, and carried their own weight through it. What they share is instructive for any family in a similar position. Stroke impact on family plays out differently depending on who is watching, who is helping, and who is still finding their way back to the person they knew before the stroke. Their account is not about burden. It is about recalibration, finding a new way to be a family when every role has shifted. What Families Can Take From This Conversation If you are supporting a stroke survivor or a survivor who has struggled with accepting help, three things stand out from this episode. The first is that a survivor’s professional identity shapes their recovery. Someone who has spent their career as a carer may need more time and explicit permission before they can accept care themselves. Naming this directly with patience, not pressure, opens the door. The second is that adult children carry more than they show. Sean and Paul’s willingness to speak plainly about their experience is a reminder that caregiving has an interior weight that often goes unspoken. Creating space for that conversation within a family is not weakness. It is what keeps families intact through long recoveries. The third is that stroke impact on family is not a moment – it is a process. It evolves, shifts, and asks different things of different people at different stages. Families who move through it with honesty tend to find a stronger dynamic on the other side. If this episode resonates with you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened explores the tools that have helped stroke survivors and their families navigate the long road back. You can find it at recoveryafterstroke.com/book. If the show has helped you or someone in your life, you can support it financially at 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. The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan When the family’s caregiver becomes the patient, everything changes. Kathy Cunningham and sons Sean and Paul Monahan share the unfiltered truth. Highlights: 00:00 Kathy’s Life Before the Stroke 03:54 Family Reactions and Hospital Experience 12:31 Coping with the Aftermath 15:33 Stroke Impact on Family 21:24 Reflections on Control and Independence 28:33 Facing Mortality: A Son’s Perspective 35:19 Navigating Family Dynamics During Crisis 45:28 Understanding the Impact of Stroke on Relationships 53:21 Finding a New Normal After Recovery 01:04:58 Reflections on Healing and Future Aspirations Transcript: Kathy’s Life Before the Stroke BIll Gasiamis (00:00) Welcome to Recovery After Stroke. I’m Bill Gasciamas. Today’s episode is one that doesn’t happen often on this show. And I think that’s exactly what makes it worth your full attention. Today I’m joined by three guests, Kather Cunningham, who is a healthcare professional and who is the person who experienced a stroke. But what makes this conversation different is who’s sitting beside her. Her two sons, Sean Monaghan and Paul Monaghan, who were there through every stage of her recovery. We talk about what stroke does to a family when the person who has always done the caring suddenly needs the care themselves. We talk about what Sean and Paul experienced on the other side of that, what caregiving looks like when it’s your parent and it’s not a choice, and when your household has already been touched by stroke before. And we talk about the thing that Kathy found hardest, accepting help. If you’ve been listening to this show for a while, you know that recovery rarely belongs to just one person. It belongs to everyone around them. This episode is for the families. Before we get into it, if you’re in the middle of your own recovery or supporting someone through theirs, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, was written for exactly this moment. You can find it at recoveryafterstroke dot com slash book. And if this show has helped you or someone you care about, you can support it financially at patreon dot com slash recovery after stroke. Every contribution helps keep the podcast running. BIll Gasiamis (01:30) Cathy Cunningham, Sean Monahan and Paul Monahan, welcome to the podcast. Kathy Cunningham, & Sean, son (01:35) Thank you. Nice to be on. Glad to be here. Paul (01:36) Thanks. BIll Gasiamis (01:38) So Cathy, can you tell me a little bit about what life was like before the stroke? Kathy Cunningham, & Sean, son (01:46) Okay. So I I was working full time as a s s director of health services at a small I mean a medium private school, grades five through twelve. and I was the director of health services, a school nurse. and I had worked there for twenty five years, at Thayer Academy. and so that Tuesday, the day of the stroke, I had worked as usual, you know, put in my eight to ten ten hours. and I don’t remember until day ten. so Sean it would be better to describe the first the he ’cause he had to manage everything on his own, w with Paul, and so he maybe he could describe what happened. Family Reactions and Hospital Experience BIll Gasiamis (02:41) Yeah, Sean, tell us a little bit about perhaps how you experienced what happened to your mum. Kathy Cunningham, & Sean, son (02:47) So she woke me up. I was am still living here. She woke me up around two in the morning saying that she had severe esophageal pain. Yeah. She described as a nine out of ten, ten out ten. and my first instinct was to call an ambulance, but she said, No, no, no, maybe it’ll let up You know, like another ten, fifteen minutes. And so I was a little bit like, you know, eventually, you know, I I convinced her I to let me drive her to the hospital. And it was there in the ER where she had a stroke. she was you know, had nausea and was vomiting. and when I was like helping like you know clean up clean it up whatnot I noticed that she wasn’t like responding at all it was just glassy eyed and so I pressed the you know emergency call button because there wasn’t a doctor or nurse in at that time and there it wasn’t somebody

    1hr 15min

  6. 9 June

    Brad Pitzele – How Exercise With Oxygen Therapy Brings Hyperbaric-Style Benefits Home

    EWOT for Stroke Recovery: The Affordable Alternative to Hyperbaric Oxygen Therapy Brad Pitzele did not set out to become an oxygen therapy equipment maker. He set out to survive. After years of battling significant health challenges, conventional medicine had given him answers that kept failing him. He tried around 200 treatments. Some helped. Many did not. Then he found EWOT Exercise With Oxygen Therapy, and something finally shifted. Brad’s journey is not the same as a stroke. But what he discovered about oxygen, inflammation, and cellular energy maps directly onto one of the most stubborn obstacles stroke survivors face: the feeling that the brain has gone offline, that the body is running on empty, and that the path back is either impossibly expensive or simply does not exist. In Episode 407 of the Recovery After Stroke podcast, Brad shares what EWOT is, why it works, and why he now makes affordable EWOT systems through his company, One Thousand Roads, specifically so survivors do not have to remortgage their homes to access oxygen-driven recovery. What Is EWOT? EWOT stands for Exercise With Oxygen Therapy. The concept is straightforward: you breathe high-concentration oxygen through a mask while exercising even lightly, and that combination pushes oxygen into parts of the body that normal breathing cannot reliably reach. Most people assume oxygen therapy means a hyperbaric chamber: a pressurized tube, a clinic, a course of treatments costing tens of thousands of dollars. Hyperbaric oxygen therapy (HBOT) is effective. Brad describes it as “a heroic treatment.” But it is also inaccessible for most survivors, financially and logistically. EWOT operates on a related principle without the chamber. The key mechanism is not about oxygenating red blood cells; they are already carrying close to their maximum load under normal breathing. The target is the blood plasma. Plasma does not carry oxygen efficiently under resting conditions, but during exercise, even light exercise, blood pressure and circulation increase enough to force dissolved oxygen into the plasma. That plasma can then reach the micro-capillaries, the tiny vessels that feed tissues deep in the body, including areas of the brain that become inflamed and oxygen-starved after a stroke. The Post-Stroke Energy Problem One of the most commonly reported and least-explained symptoms after stroke is fatigue that does not go away, no matter how much a survivor rests. Most survivors are told that is just part of it. Brad’s framework centres on mitochondrial dysfunction. Mitochondria are the energy-producing structures inside cells. After stroke, the cells in and around the affected area are often not dead; they are in a kind of low-power state. Brad describes it as a “brownout”: the lights are on, but dimly. The mitochondria are not producing energy at full capacity, and one significant reason for that is insufficient oxygen supply to the tissue. “The cells that are offline after a stroke are not all dead. Some of them are just starving. Oxygen is part of what feeds them back.” — Brad Pitzele, Episode 407 When EWOT increases plasma oxygen during exercise, it can reach those inflamed, under-oxygenated micro-capillaries that larger vessels cannot access. The result, for some survivors, is a gradual improvement in energy, cognition, and physical capacity, not because the therapy is miraculous, but because it addresses a specific physiological deficit that conventional post-stroke care often does not target. EWOT vs. Hyperbaric: What’s the Real Difference? The honest answer is that EWOT and hyperbaric oxygen therapy are not equivalent. HBOT delivers oxygen under pressure, which drives it into tissue more forcefully. For certain conditions, particularly in acute or severe cases, hyperbaric oxygen has a stronger evidence base.  But for many stroke survivors in the subacute or chronic phase of recovery, access is the defining variable, not theoretical ceiling. A home-based hyperbaric unit costs $50,000 to $75,000. A clinical course can run to $60,000 or more. EWOT systems are available for under $2,000.  The question Brad puts to survivors is not “which is better in a lab?” It is: “Which one can you actually do, consistently, at home, over the months and years that brain recovery requires?” Consistency matters more than peak intensity in long-term neurological recovery.  Starting EWOT With Deficits EWOT does not require running on a treadmill. The exercise component can be a stationary bike, a recumbent bike, or simple seated leg movements with one limb strapped in. The goal is to raise circulation enough to push oxygen into the plasma, not to hit a cardiovascular fitness target. For survivors exploring this option, Brad’s team has built a specific resource at onethousandroads.com/stroke-recovery with a listener discount of $100 to $500, depending on the package. There is also a broader introduction to EWOT at onethousandroads.com/pages/exercise-with-oxygen-therapy. Recovery Is Possible — And It Does Not Have to Be Expensive If this episode resonated with you or if you want to explore more conversations about recovery options that do not require a second mortgage, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is available at recoveryafterstroke.com/book. And if the Recovery After Stroke podcast has been useful to you, you can support it financially at patreon.com/recoveryafterstroke. Every contribution helps keep the show going and these conversations accessible to survivors around the world. 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. EWOT for Stroke Recovery: The Affordable Alternative to Hyperbaric Oxygen Therapy Why pay $60,000 for hyperbaric oxygen? EWOT brings oxygen therapy into your living room — and could help the brain cells that are only offline. One Thousands Roads Exercise With Oxygen Therapy (EWOT) YouTube Channel Highlights: 00:00 Introduction and Background 05:37 Challenges in Stroke Recovery and Treatment Options 13:45 Understanding Oxygen Therapy and Its Mechanism 15:51 Oxygen Toxicity Explained 19:24 The Importance of Oxygenating Blood Plasma 24:53 Oxygen and Mitochondrial Function 31:16 Adapting Exercise for Stroke Survivors 38:27 Cost and Accessibility of Oxygen Therapy Devices Transcript: Introduction – EWOT for Stroke Recovery Brad Pitzele (00:00) like many of your listeners, when you have a medical issue that isn’t treated by traditional medicine and you’re desperate to get your life back, you’ll try just about anything. You, the lens it goes through is like, Well, how bad can this hurt me? BIll Gasiamis (00:15) Welcome back to Recovery After Stroke. I’m your host, Bill Gassiamas. Today’s guest is Brad Pitzele, founder of 1000 Roads, who overcame significant health challenges of his own and along the way discovered the science behind exercise with oxygen therapy. In this conversation, we get into how increasing oxygen saturation in the blood, specifically in the blood plasma, can help reach the inflamed microcapillaries. That are blocking oxygen delivery to cells in the recovering brain. We talk about mitochondrial dysfunction, post-stroke fatigue, and why Ewatt is worth understanding as an accessible alternative to hyperbaric oxygen therapy. Before we get into it, if you’ve found value in this podcast and want to support it financially, you can do that at patreon.com/slash recovery after stroke. And if you haven’t yet read my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, it is available at recovery after stroke dot com slash book. Here’s my conversation with Brad. BIll Gasiamis (01:19) Brad Pitsley, welcome to the podcast. Brad Pitzele (01:22) Thank you so much. BIll Gasiamis (01:24) Thanks for reaching out and ⁓ connecting with me to educate me on another thing that I can bring to stroke survivors that could potentially help them in the rehabilitation side of their brain. The the thumbnail that people found on YouTube is probably gonna have E W O T on it somewhere. E what. And it sounds something like something out of that ⁓ space war out of out of what is it? Brad Pitzele (01:53) Star Wars. Star Wars. BIll Gasiamis (01:54) Star Wars. Like the Ewok, right? And it doesn’t really mean anything to me. But before we descri tell people what Ewok is, ⁓ tell me a little bit about your background, the work that you do and how it is you came to be on the podcast today is for s for for the specific discussion that we’re gonna have. Brad Pitzele (01:58) Yep. Sure. ⁓ yeah, so I ⁓ I I’m an e recovering engineer. I like to joke. I spent my first decade of my life engineering. later on in life, I left engineering and went into different pursuits and I became chronically ill, had a variety of medical issues, ⁓ cancer, autoimmunity, and eventually Lyme disease. And I was in really bad shape. And a doctor recommended I look into either hyperbaric oxygen or this exercise with oxygen therapy, EWAT, that almost no one had heard of, and I’d never heard of it. ⁓ I I I had tried like everything to get better at this point. I was many years in special diets, ⁓ all sorts of supplements and ⁓ all sorts of modalities and things. And nothing really worked. There was nothing in a matter of fact, some of the medications I took actually gave me cancer. So it kind of forced me on this road to try something different. ⁓ and eventually I found my way back to health through exercise with oxygen when so many things weren’t working. ⁓ and actually later paired that with ⁓ red light therapy. ⁓ and along the way I started because I’m an engineer and I’m inquisitive, I like It was Lyme disease is kind of a do-it-yourself disease.

    53 min

  7. 5 June

    Plastics in Your Arteries: The Stroke Risk Study You Must Know

    Microplastics and Stroke Risk: What a Landmark 2024 Study Found Inside Human Arteries In 2024, a team of Italian researchers published a study in the New England Journal of Medicine that stopped the cardiovascular science community in its tracks. They found microplastics, tiny synthetic fragments embedded inside the carotid artery plaque of more than half the patients they examined. And the patients who had them faced more than four and a half times the risk of a serious cardiovascular event compared to those who didn’t. This isn’t a distant, theoretical risk. These are living people who had already been identified as having carotid artery disease, and plastics were found inside their arterial walls. For stroke survivors and those at elevated risk of stroke, this study raises important questions that the medical system has not yet caught up with. What the Research Found The study by Marfella et al., published in the New England Journal of Medicine (2024), enrolled 304 patients who were undergoing carotid endarterectomy, a surgical procedure to remove plaque from the carotid arteries. Researchers analysed the excised plaque for the presence of microplastics and nanoplastics. Their findings: 58% of patients had detectable levels of polyethylene, polyvinyl chloride (PVC), or polystyrene in their arterial plaque. This was not contamination from the surgical procedure; it was already there. Over a 34-month follow-up period, patients with microplastics in their plaque had a 4.53 times higher risk of a combined endpoint: non-fatal myocardial infarction, non-fatal stroke, or death from any cause. Inflammatory markers were significantly elevated in the microplastics-positive group. IL-18 and TNF-alpha proteins associated with systemic vascular inflammation were markedly higher in plaque samples that contained plastics. This suggests the mechanism is not simply physical obstruction, but an inflammatory cascade triggered by the presence of synthetic material in arterial tissue. What This Means for Stroke Survivors The carotid arteries are the primary conduits supplying oxygenated blood to the brain. Plaque accumulation in these vessels is one of the leading causes of ischaemic stroke, and carotid artery disease is a condition many stroke survivors are already living with. “The patients with microplastics in their plaque had a 4.53 times higher risk of stroke, heart attack, or death over the 34-month follow-up. That’s not a marginal finding. That’s a signal the research community needed to take seriously.” The NEJM study doesn’t yet tell us whether removing microplastic exposure after the fact reduces risk. It doesn’t confirm that healthy individuals with no existing carotid disease are accumulating plastics at the same rate. And it cannot tell us which plastic sources are most responsible because we’re exposed to microplastics through drinking water, food packaging, air, and a dozen other vectors simultaneously. But what it does tell us clearly and with high statistical significance is that microplastics in arterial plaque are associated with dramatically worse cardiovascular outcomes. What the Research Does Not Yet Tell Us Science at the frontier moves in one direction at a time. This study establishes association, not causation. It cannot yet answer: Whether people without existing carotid disease are accumulating microplastics at comparable rates. Whether reducing exposure actively reverses or slows plaque-associated risk. Which types of microplastics are most biologically harmful? Whether there will be a clinical screening tool for this in the near future. These are the questions the next generation of research will need to answer. In the meantime, it’s reasonable to act on what we do know. Practical Steps to Reduce Exposure No clinical screening currently exists for microplastics in arterial plaque. There is no blood test, no imaging, no biomarker that your GP can order today. What you can do is reduce your ongoing exposure, particularly through food and water contact with plastics. Evidence-informed steps worth discussing with your treating team: Use glass, stainless steel, or ceramic containers rather than plastic for food and drink storage. Avoid microwaving food in plastic containers; heat accelerates the leaching of plastic particles. Filter your drinking water; some filters (carbon block and reverse osmosis) reduce microplastic levels significantly. Reduce consumption of highly processed foods in plastic packaging. Bring this study to your vascular neurologist, cardiologist, or GP and ask whether it’s relevant to your personal risk profile. This is not a recommendation to take a supplement or start a treatment. It’s an invitation to have an informed conversation with the people responsible for your care using the best available evidence. If you found this useful, my book walks through the science of stroke recovery in the same evidence-first, no-hype way. Find it at recoveryafterstroke.com/book. Want to go deeper and support the channel? Join the community at patreon.com/recoveryafterstroke. The post Plastics in Your Arteries: The Stroke Risk Study You Must Know appeared first on Recovery After Stroke.

    9 min

  8. 1 June

    Sent Home Mid-Stroke: CEO of Optometry Canada on Vision Loss and Recovery – Francois Couillard

    Stroke Symptoms Dismissed – What Happens When the CEO of Canada’s Optometry Body Has a Stroke Stroke Symptoms Dismissed: François Couillard has spent his career protecting people’s vision. As the CEO of Optometry Canada, the national body representing every optometrist in the country, he understands better than almost anyone how much vision matters, what threatens it, and how to preserve it. Then he had a stroke. And it only attacked his eyes. The irony is not lost on François. But what makes his story essential listening for every stroke survivor and caregiver isn’t the cruel symmetry of it; it’s what happened at the emergency department before his stroke even reached its worst point. His symptoms were dismissed. He was sent home. When Stroke Symptoms Are Dismissed François arrived at the ER with symptoms. He was assessed and sent home. What the medical team didn’t know and what François didn’t yet know was that he was mid-stroke. He walked home alone in the middle of the night. This is not an isolated story. Stroke symptoms dismissed at the emergency department are more common than most people realise, particularly when the presentation is atypical. Symptoms that don’t match the classic FAST criteria, such as facial drooping, arm weakness, speech difficulties, and time to call, can be overlooked, minimised, or misattributed. Visual disturbances, in particular, are frequently missed. For François, the consequences became clear the next morning. Waking Up With Vision Loss After Stroke François woke up having lost the right visual field in both eyes permanently. The condition is called homonymous hemianopia: a stroke-related vision loss that removes the same portion of the visual field from each eye simultaneously. Here is what makes it disorienting: the brain doesn’t show you the gap. It fills it in. You don’t see darkness where the vision is missing, you see what your brain invents to complete the picture. You look normal. You appear, in many ways, almost normal. But you are not. The Hidden Cost of Stroke Vision Loss What François describes and what many survivors with stroke-related vision changes will recognise is the extraordinary cognitive load of compensating for what you can no longer see. The brain works continuously to fill in the missing visual field. That work is invisible to everyone around you. There’s no cast, no limp, no obvious marker. But the fatigue it generates is profound and relentless. This is the invisible disability that follows many stroke survivors: the gap between how they appear and the effort required to simply exist in a world that assumes full function. Stroke vision loss recovery is rarely straightforward, and the fatigue accompanying it is one of the least-discussed consequences of stroke. François knows this intimately. He continues to live it. One Week Post-Stroke: 100km on the Bike One week after his stroke, François completed a 100km cycling event. One week. 100 kilometres. This isn’t recklessness, it’s the character of the man. A pragmatist who processes by doing, who defines himself not by what has been taken but by what remains. His approach to his stroke carries a dark honesty: he hasn’t minimised what happened, but he hasn’t surrendered to it either. The 100km ride is not a metaphor. It happened. Returning to Lead a National Health Organisation François returned to his role as CEO of Optometry Canada. He leads a national health organisation while navigating permanent vision loss, invisible fatigue, and the ongoing adaptation that stroke demands. He also carries the particular weight of professional identity intersecting with personal experience. The man who has advocated for Canadians’ vision health now lives with the consequences of a stroke that targeted exactly that. He has become, in a specific and irreversible way, both the professional and the patient. That dual perspective, the insider who became the survivor, gives his voice a precision that very few stroke stories carry. What This Episode Is Really About Episode 406 of the Recovery After Stroke podcast is not simply about vision therapy after stroke, although François discusses that too. It is about what happens when stroke symptoms are dismissed and the cascade that follows. It is about the invisible burden of neurological fatigue. It is about identity, adaptation, and the kind of resilience that doesn’t announce itself. If your stroke symptoms were dismissed, or you know someone whose were, François’s story will feel familiar in a way that is both validating and important. If you are navigating stroke vision loss and wondering whether the fatigue you feel is real, it is, and François names it plainly. Listen to Episode 406 with François Couillard available now on all major podcast platforms. Bill’s book – The Unexpected Way That A Stroke Became The Best Thing That Happened Support the show: https://www.patreon.com/recoveryafterstroke Sent Home Mid-Stroke: CEO of Optometry Canada on Vision Loss and Recovery – Francois Couillard When François Couillard, CEO of Optometry Canada, went to the ER with stroke symptoms, he was sent home. By morning, he had permanently lost part of his vision. In this episode, he shares his experience with stroke-related vision loss, invisible fatigue, and the resilience required to adapt and move forward. Highlights: 00:00 Introduction 01:13 The Stroke Experience 04:14 Diagnosis and Aftermath 13:05 Navigating Recovery and Support 17:13 Vision Challenges and Cycling Safety 23:10 The Impact of Stroke on Daily Life 29:47 Finding New Connections and Balance 37:40 The Importance of Downtime 46:08 Impact of Stroke on Daily Life 51:05 Understanding Stroke and Its Misconceptions 56:18 Mindset and Recovery After Stroke Transcript: Introduction – Stroke Symptoms Dismissed François Couillard (00:00) I had no other symptoms. Everything else was functioning. I could touch my nose. I could do everything. So they said you had that episode, you zapped a piece of your brain and now go home. Bill Gasiamis (00:00) What a nerd he is. François Couillard (00:14) it’s ironic that I worked in the field of the eyes of vision. And the only thing that got affected on my stroke was my vision. BIll Gasiamis (00:25) Hello everyone, welcome to the Recovery After Stroke Podcast. I am your host, Bill Gassiamas. My guest today is Francois Couliard, the former CEO of Optometry Canada, the national body that represents every optometrist in the country. Francois has spent his career at the intersection of vision health and leadership at the highest level. And then he had a stroke. His only symptom was visual. He went to the emergency department and was sent home. And what happened in the months, hours, days and months that followed is a story about the gap between how you look and how you feel, about the invisible cost of neurological damage, and about what it means to keep leading an organization dedicated to the very thing your stroke attacks. The Stroke Experience Bill Gasiamis (01:13) Francois Coulard, welcome to the podcast. François Couillard (01:16) Thank you, Bill. It’s a pleasure to be here. Bill Gasiamis (01:18) Thank you for coming to me all the way from sunny Canada, it looks like through your window there. François Couillard (01:24) It’s very sunny, but it’s cold. was like a few days ago, it was 29 Celsius and then yesterday morning was plus two Celsius. So it’s still a little nippy in the morning. Bill Gasiamis (01:34) Ugh. It was 29 Celsius and plus two. François Couillard (01:42) Yeah, it went from 29 to plus two in 24 hours. That’s my part of the world. Bill Gasiamis (01:46) Wow, I thought Melbourne was crazy like that. Often we have 40 Celsius days in summer and then the next day it will be 20 Celsius. but I think I prefer the 20 Celsius one than the plus two Celsius one. François Couillard (02:02) Yeah, and we go in winter, we get to minus 30. So this is not bad. We don’t complain at plus two. Still nice. Bill Gasiamis (02:11) Whereas I would definitely complain. Tell me, tell me a little bit about what happened to you. François Couillard (02:16) So a few years ago, I was sitting at the kitchen table with my wife on Halloween and I’d worked all day at my desk. I’d done some strenuous exercise in the morning. Like I do a lot of exercise. ⁓ And my wife is sitting on my left. There’s just the two of us around the table. And I turned to her and I say, it’s funny. I don’t see you that well. I can see the world, but you’re a little bit, I can’t describe it. It’s just difficult to explain, but I just don’t see you well. Now I happened, and she said, you look fine and everything. happened to, at that point I was working with the Canadian Association of Optometrists. My role was CEO of the Canadian Association of Optometrists. So anything site related, I’m gonna call an optometrist. I’m not an optometrist myself. Diagnosis and Aftermath So I called the president of the association. had just talked to him an hour or two ago. I said, hey, ⁓ I’m having this thing there. Should I worry? And he said, well, it could be one of two things. You’re either having a ⁓ migraine headache or you’re having a stroke. So go lie down for half an hour. And if it’s still there, head to emergency. So that’s why I did not lie down for half an hour. I stood up and told my wife and that’s still there. We live five minutes from the hospital from a nice large tertiary care hospital. So she took me straight there. I was full of energy just like I am now bubbly, no pain, just this funny thing. So I walk in the emerge and I tell them, you know apparently I’m having a stroke with the looking at me and it’s like, you don’t look like you’re having a stroke, but okay. ⁓ So they got me through fairly quickly, maybe half an hour. They tri

    1hr 3min
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About

A Community And Podcast For Stroke Survivors And Carers

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  • Creator
    Recovery After Stroke
  • Years Active
    2019 - 2026
  • Episodes
    297
  • Rating
    Clean
  • Show Website
    Recovery After Stroke

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