Recovery After Stroke

Recovery After Stroke

A Community And Podcast For Stroke Survivors And Carers

  1. 19h ago

    Test Before You Add: Nutrition, Copper and Waking the Brain with Dr. Robert Hedaya

    Nutrition After Stroke: Why “Healthy” Isn’t Always Right for Your Brain If it’s sold as healthy, it must be safe to add to your recovery. Most of us carry that belief without examining it. A new superfood, a trending supplement, a copper bottle that promises better water. The label says healthy, so more good things should mean a better brain. Then you sit down with a psychiatrist and hear that the copper water bottle is, in his words, “a health risk.” I went into this conversation expecting a straightforward chat about nutrition after stroke. I never expected it to go where it did. My guest was Dr. Robert Hedaya, Clinical Professor of Psychiatry at Georgetown University School of Medicine and founder of The Whole Psychiatry & Brain Recovery Center in New Jersey. This was his fourth and final conversation on the show, after earlier episodes on photobiomodulation, hormones and thyroid, and what blocks brain recovery. Here are the four things he wants you to know. 1. Feed it: your brain needs raw materials Dr. Hedaya calls nutrition a bedrock of recovery. Neurons need essential fatty acids, protein, and minerals such as magnesium, zinc, copper, and selenium. B12 is needed to make myelin, the sheath that lets neurons fire at the right speed. His rules are simple: If it doesn’t grow that way, don’t eat it. Whole foods, not factory products. Balance your plate. About a third lean protein, a third above-ground vegetables, and a third healthy fats. He recommends The Zone by Barry Sears. He is blunt about blood sugar: for anyone recovering from a brain disorder, high blood sugar is your enemy. 2. Test it first: find your baseline Nutrients aren’t “more is better.” Dr. Hedaya tests B12, free copper, ceruloplasmin (the protein that binds copper), and zinc. B12 absorption can drop after 50 or with acid-blocking medication, so he looks at several markers together. In his patient population, he says, at least half are low in zinc, which neurons need to communicate. “If you’re trying to recover from any brain disorder, high blood sugar is your enemy.” 3. Question the “healthy” fads Copper is essential, but too much can harm. Dr. Hedaya says free copper can drive irritability and push zinc down, which is why he’s wary of copper water bottles. Unlined copper does release copper into what it holds. A lab test of water stored in a copper vessel measured about 1 mg/L after 24 hours in plain water, which the authors judged within WHO and US EPA limits. But the contents matter. Another study found more copper in stored water containing amino acids and organic compounds, and US food-safety rules keep acidic food and drink away from copper. That’s why copper pots are lined, as I said in the interview. Do the maths: two litres a day at that level is around 2 mg of copper from water alone, before you eat anything. Whether that matters depends on your baseline. With normal copper and good zinc, probably not much. With high copper or low zinc, it’s an extra source, and that’s what he tests for. I found no study of copper bottles in stroke survivors, so treat his “health risk” as a clinical judgment. His other examples: Avocado. One analysis of eight varieties found copper was the main microelement measured. Dark chocolate. ConsumerLab testing found 43% of 72 products exceeded California’s lead limit and 35% its cadmium limit, though median levels were below the limits. Brand and serving size matter. Birth control pills. A German survey found higher serum copper in women on the pill. His view that copper IUDs do the same is a clinical observation. 4. Wake it up: what HYLANE is, and what it isn’t His clinic uses HYLANE: hyperbaric oxygen, laser, and neural exercises such as neurofeedback. They’re passive treatments, and he follows Professor Shai Efrati’s protocol, covered in this episode. His limits are clear: Dead cells stay dead. Dormant cells can be woken, and progress can speed up, but the work remains. Hyperbaric oxygen isn’t for everyone. Infections like babesia or ear-clearing problems can rule it out, and seizures are a small risk. It needs clinician assessment. Cost is real. He doesn’t take insurance and sees new patients in person, though he’ll guide an open-minded local clinician. Yes, it’s expensive, and so is not being able to work for thirty years. The belief to replace it with “Healthy” isn’t a property of a food or supplement. It’s a relationship between that thing and your baseline. Remember to test before you add anything. Frequently asked questions What is the best nutrition after stroke? Dr. Hedaya starts with whole foods and a balanced plate, then tests for deficiencies. Is a copper water bottle safe after a stroke? Unlined copper releases copper into water, more so with acidic or organic-rich drinks. He calls it a health risk, especially with high copper or low zinc. Ask your doctor to test copper and zinc first. Can any treatment revive dead brain cells? No. He says HYLANE may wake dormant cells and speed progress. My book, The Unexpected Way That A Stroke Became The Best Thing That Happened, is a path to post-traumatic growth after stroke. You can support the show financially on Patreon, and find Dr. Hedaya at wholepsychiatry.com. Research (via PubMed): DOIs 10.1016/j.jaim.2018.02.134, 10.1007/s10482-010-9435-3, 10.1007/s11356-020-09970-z, 10.1038/s41598-023-50119-y, 10.3389/fnut.2024.1366231, 10.1038/sj.ejcn.1600631, 10.3143/geriatrics.37.304. Food Code summary: Snopes. 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. Nutrition, Copper, and Waking the Brain Interview with Dr. Robert Hedaya Copper water, avocado, dark chocolate: Dr. Hedaya explains why “healthy” depends on your baseline, and what to test before you add anything. 00:00 Nutrition After Stroke 03:50 Two rules for what to eat 07:41 Is a copper water bottle healthy? 14:22 How should you build your plate? 16:13 Are avocado and chocolate safe? 20:40 Is there a passive brain therapy? 30:36 Can therapy revive dead brain cells? 35:25 What if you can’t afford it? Transcript: Nutrition After Stroke Dr Hedaya (00:00) because you don’t win the battle By being hopeless you win the battle by saying I’m gonna die trying I’m gonna I’m gonna beat this thing. I’m gonna beat it. I don’t know how long it’s gonna take I don’t know what turns in the road. I’m gonna take I don’t know what the path is gonna be. I am gonna make this my vocation I’m gonna do this. Of course, you’re gonna have down days, you’re a human being Bill Gasiamis (00:21) Welcome back to Recovery After Stroke. Today is a milestone episode. This is the fourth and final conversation with Dr. Robert Hedea, Clinical Professor of Psychiatry at Georgetown University School of Medicine and founder of the Whole Psychiatry and Brain Recovery Center in New Jersey. Over the first three episodes, we covered laser therapy, hormones, and thyroid, and what blocks brain recovery. Today we’re going Back to something most of us are overcomplicating, nutrition. And then into something I’d never heard of before called Hylain. In this conversation, you’ll hear four things: how to feed your brain the raw materials it needs, why testing your baseline comes before adding anything, why some healthy sounding habits deserve a second look and what Hyane can and can’t do. Listen for the one idea that changes how you decide what you add to your recovery. Before we begin my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is a Path to Post Traumatic Growth After Stroke, the field pioneered by Tedesky and Calhoun. Find that at recoveryafterstroke.com/book. And remember to support the show financially on Patreon if you can, at patreon.com/recoveryafterstroke. It helps cover the costs. Of keeping this podcast going. And I’m grateful to everyone who already supports the podcast in some way, shape, or form, be it financial or by leaving a comment or leaving a five star review. Now here’s my discussion with Doctor Hedaya Bill Gasiamis (02:03) Doctor Robert Hedaya, welcome back to the podcast. Dr Hedaya (02:06) Thank you for having me, Bill. It’s pleasure. Bill Gasiamis (02:09) Thank you for this opportunity as well. We’ve done three episodes already. And previously we’ve spoken about hormones, toxins, laser therapy. it’s been quite a broad range of discussions. And for people watching and listening, I would encourage you to go back and check out those episodes. All the links will be in the show notes because they are a different perspective on how to look at Healing the brain and recovery after something like a stroke. And today we’re going to touch on some other things that one of the things I’ve never heard of, and one of the other things which we talk about so often, which is overspoken about, which is nutrition. And I think we also overcomplicate it. So if you could kind of give me an indication or an or some information around how to go about nutrition after a brain injury, how you have found approaching nutrition has been positive and successful for your patients. And then and then we’ll you’ll tell me about HyLane and what it is and how it is applied in a similar situation. Two rules for what to eat Dr Hedaya (03:27) Okay, well, so nutrition is really one of the foundations of recovery after stroke, after chronic illness. For treating chronic illness, it’s really a bedrock, really. Without adequate nutrition, it’s hard to make the best progress and maybe even hard to make meaningful progress. Why? Just think, the analogy I use is like, you know, if you want to make a Big Mac, You need the sesame seed bun, you need the special sauce, you need the pickle and the patties and the lettuce and the tomato, an

  2. 3d ago

    Unmet Needs After Stroke: What 83 Survivors and Carers Told Me

    Unmet Needs After Stroke: Why Therapy Isn’t Always Enough If you’ve had a stroke, the natural assumption is that recovery comes down to how much therapy you can get: more physio, more occupational therapy, more speech sessions. Six years ago I put a short questionnaire on this website asking stroke survivors and carers what they’d change about their recovery. Eighty-three of you answered. The single most common request wasn’t a body part. And the reason some of the most persistent unmet needs after stroke show up even in people who are already getting therapy is stranger than it sounds. What 83 Stroke Survivors and Carers Actually Asked For The questionnaire wasn’t fancy: a handful of questions for anyone recovering from a stroke, or caring for someone who is. Over six years, 83 people answered: 58 survivors and 25 carers. Grouped by theme, physical goals a working arm and hand, better walking, better balance came up most often overall, named by about one in three respondents (27 of 83). But looked at as a single, specific theme, the biggest individual ask wasn’t a body part. It was information: almost one in four people (19 of 83) asked for a clear plan, concrete answers, or simply a way to know whether they were on track. One person asked for a flowchart of what to do after a stroke. Another just wanted to know if they were doing enough. Then there was this: when people were asked how strongly they agreed with “I don’t feel supported, informed, or empowered to assist in my own recovery,” nearly half 47% agreed strongly. And the people already receiving physio, OT, speech therapy, or outpatient rehab weren’t exempt. On average, they still scored high on that statement (5.9 out of 10), lower than people with no support at all (6.8), but still high. If therapy alone closed the gap, that shouldn’t happen. It’s Not Just This Audience That pattern isn’t unique to the people who happen to read this website. A 2014 study of 765 Australian stroke survivors, all at least a year past their stroke, found that 84% reported needs that weren’t being fully met, with a median of four unmet needs per person. The people with the most unmet needs tended to be dealing with fatigue, cognitive or memory changes, and emotional changes: the parts of stroke recovery that don’t show up on a scan. Why Information and a Plan Seem to Matter So Much A Cochrane review, one of the more rigorous forms of evidence synthesis, pooled 21 trials covering over 2,200 stroke patients and nearly 1,300 carers, looking at what happens when people are given proper information about their stroke. The results were modest but real: better patient and carer knowledge, higher satisfaction with care, and a small reduction in depression scores. Notably, information people actively engaged with asking questions, working through it, revisiting it did more for mood than information just handed over as a leaflet. The same review found no measurable effect on carer mood, the overall rate of anxiety or depression diagnoses, or mortality, so this isn’t being oversold as a cure. A second Cochrane review looked specifically at self-management programmes: education plus skills training in goal-setting, problem-solving and decision-making, delivered one-to-one or in groups. Across 14 trials and more than 1,800 participants, people who went through these programmes reported better quality of life and higher self-efficacy the belief that you can actually influence what happens next in your own recovery. The reviewers themselves rated this evidence as low quality because the programmes varied so much from each other. The direction is consistent; the certainty isn’t there yet. That idea that you don’t wait to feel ready before you start building a plan- you build it in small steps while recovery is still hard is also the core of my new book, Your World Doesn’t Have to Stay This Small. It’s not written only for stroke survivors; it’s for anyone whose life split into a clear before-and-after. If the gap described above sounds familiar, it’s worth a look: mybook.to/yourworld. What This Means for Your Recovery None of this says therapy doesn’t matter; it clearly does. What it suggests is that therapy on its own isn’t the whole mechanism. Understanding your own stroke, and having skills to set goals and solve problems between appointments, appears to do something therapy sessions alone don’t: it carries you through the gaps, including the one that opens the day formal rehab stops. That fits with what survivors and carers in the questionnaire actually asked for: not more equipment, but a plan they could understand and act on themselves, alongside their treating team, not instead of it. What the Research Doesn’t Tell Us Yet In the interest of honesty: the 83 responses above aren’t a scientific survey. They’re a self-selected group of people who found this website and chose to answer, over six years, and the theme coding behind the statistics was done in a first pass. The Cochrane evidence on information provision shows small, real effects, not dramatic ones, and didn’t move carer mood or overall anxiety/depression rates. The self-management evidence is rated low quality specifically because programmes differ so much in length, content and delivery; researchers don’t yet know which elements matter most, or what the “right dose” looks like. This is a consistent direction worth acting on, not a settled, final answer. Three Questions to Bring to Your Treating Team This isn’t about replacing your therapists; it’s about walking into the room with your own agenda instead of just theirs. Before your next appointment, write down the three questions you most want answered, and ask all three. Ask directly: “What’s the plan for the next three months, and what’s my part in it?” and ask them to write it down. Find one person who’s already where you’re trying to get to a support group, an online community, someone further along in recovery, because feeling alone in this was one of the things people raised most often. If you want to go deeper on building that plan, Bill’s book covers it from both the post-traumatic growth side (recoveryafterstroke.com/book) and the practical, rebuild-your-life side (mybook.to/yourworld). And if these videos are useful to you, Recovery After Stroke runs on listener support; you can help keep them coming 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 post Unmet Needs After Stroke: What 83 Survivors and Carers Told Me appeared first on Recovery After Stroke.

  3. Oct 12

    Alan Durnwirth: 32 Years After an AVM Rupture and the Undercurrent That Shaped His Life

    Long-Term Effects of Stroke: 32 Years After Alan Durnwirth’s AVM Rupture Written by Bill Gasiamis, a three-time stroke survivor and host of the Recovery After Stroke podcast. In March 1994, Alan Durnwirth was 24, five months from his wedding, and new to his first management role. After a wisdom tooth extraction he became lethargic and mentally foggy, and his dentist reassured him more than once that recovery can take longer than people expect. Over the following weeks the right side of his face began to droop. Then one morning he woke paralyzed down that side, barely able to say his fiancée’s name. She drove him to the emergency room, where doctors found an arteriovenous malformation in his left frontal cortex had ruptured. Surgery followed three days later. According to Alan, the surgeon told her afterwards that if she had not acted that morning, he had probably had about twenty minutes. That was 32 years ago. Alan is 57 now, still married to the woman who got him there, and still recovering — the part of stroke that rarely features in conversations about the first year. Across more than 400 conversations on this show, the survivors furthest from their stroke tend to say a version of the same thing: the effects change, but they do not finish. What an AVM rupture is, and why it counts as a stroke An arteriovenous malformation, or AVM, is a tangle of blood vessels in which arteries connect directly to veins, bypassing the capillaries that normally sit between them. Most people who have one are born with it, and many never find out. When an AVM ruptures, blood leaks into surrounding brain tissue, which makes it a hemorrhagic stroke. Alan’s was congenital, and part of it is still there. Two other survivors have described the same event: Juan Gonzales, eleven years on, and Lorenzo Price, a tattoo artist whose AVM upended his working life. The long-term effects of stroke nobody warns you about Alan lost the ability to walk, speak, read, and write. He spent one to two weeks in intensive care, about eight weeks in rehab, a long stretch of outpatient care, and roughly eight months before returning to work. Three decades on, what remains is subtler and much harder for other people to see: Slower processing and word-finding. His thinking is sometimes slow, and a sentence can stall while he looks for the next word. Visual and sensory overload. Screens can bring on nausea and seizure-type sensations if he pushes too far. Fatigue. For years he put it down to ordinary eye strain. Focal epilepsy and right-sided fine-motor weakness, both of which he still manages. Fatigue, slowed processing and sensitivity to stimulation are among the most commonly reported long-term effects of stroke, and because none of it shows, it is easy for others to wave away. The deficits no one can see and cognitive fatigue after stroke are the subjects survivors raise with me most often, usually long after everyone else has stopped asking. Alan’s workarounds are worth borrowing. He stands up and walks every 30 minutes. He asks people to email a recap after phone calls so he has a written record. And when a thought drops out mid-conversation, he asks for a second, which reads as careful thinking. When the symptoms hide in plain sight Long before the rupture, Alan was losing small pieces of time. In class he would miss five seconds, thirty seconds, sometimes more. His teachers saw a daydreamer. He decided he was an anxious child. He became skilled at covering the gaps, and his wife of five years saw something she had no name for. He had no brain scan until just before surgery, at almost 25. Only afterwards did he understand those lost moments were seizures. Not every daydreamer has an AVM, but repeated, unexplained lapses deserve a medical conversation rather than a convenient label. “I think everybody has an undercurrent of something.” — Alan Durnwirth What 32 years of recovery looks like There is no finish line. Alan says some days are harder than others, and that he has learned to recognize them and slow down. Recovery now means maintenance: his medication, good nutrition, and walking about ten miles a day, five in the morning and five in the afternoon. Walking began as a way to get back a sense of control, and became the thing that calms his mind. His career reshaped itself around his brain. Unable to hold the corporate pace, he started a graphic design business from home, taking fewer clients and more time. He still runs it, and it meant both he and his wife were home while their children were small. Alan also took anti-seizure medication for 15 years and only recognized, after a change, that a persistent low mood had quietly become his normal. A later switch was made without a gradual taper, and the months that followed were frightening enough that his wife connected the timing and his neurologist intervened. That is his personal experience, not advice: never start, stop or change a medication without consulting your doctor. Turning a lifelong undercurrent into a book On those long walks, memories he had lost after surgery started coming back. Alan journaled them, several hundred entries, then expanded them into longer pieces, and they became Silent Fuse: Living with the Undercurrent That Shaped My Life. Writing it helped him stop blaming people and circumstances, and let go of old hurt and anger. He now says plainly that he loves himself, and describes the book as almost a love story about his wife. Psychologists Richard Tedeschi and Lawrence Calhoun call this post-traumatic growth: not the absence of struggle, but the meaning and strength found through it. I have written about the growth you did not know you were having, and my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, offers a path to post-traumatic growth after stroke. Frequently asked questions What are the long-term effects of stroke after an AVM rupture? They vary with where the bleed happened and what treatment was needed. Alan’s include slowed processing, word-finding pauses, sensory overload, fatigue and focal epilepsy. Ask your care team what to expect. Can you keep recovering decades after a stroke? Alan says yes. Thirty-two years on, he still notices change. Gains usually slow with time, but many survivors keep adapting and improving for years. What is an AVM rupture? It is when an AVM, a tangle of abnormal blood vessels, bursts and bleeds into the brain, causing a hemorrhagic stroke. It is a medical emergency, so seek emergency care immediately. If a stroke has made your world feel smaller, my new book, Your World Doesn’t Have to Stay This Small, is a practical guide to rebuilding your life after trauma, even when you are not ready. Remember to subscribe so you never miss a survivor story, and if this show has helped you, you can support it at patreon.com/recoveryafterstroke. Alan’s book, Silent Fuse, is on Amazon and at Barnes & Noble. 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. Alan Durnwirth: 32 Years After an AVM Rupture and the Undercurrent That Shaped His Life (Interview) Alan Durnwirth had about 20 minutes when his AVM ruptured at 24. Now 57, he’s still recovering, still walking, and still growing. Hear how. Highlights: 00:00 They said it was just the tooth 10:59 Why he had to work for himself 15:20 How he hid the missing time 19:00 When the word just goes 27:43 The medication change nobody tapered 42:00 Everybody has an undercurrent 50:55 Twenty minutes to live Transcript: They said it was just the tooth Bill Gasiamis (00:00) So what is it like to rediscover yourself? Alan Durnwirth (00:02) I feel it feels great to rediscover yourself. I can honestly say that I I love myself now. I’ve let so much. hurt and anger and and and feelings that I had for so many years just let them go or work through them. that I can just move forward. Bill Gasiamis (00:23) Welcome to Recovery After Stroke. I’m Bill Garciamas and my guest today is Alan Durnworth. In March nineteen ninety four, Alan was twenty four and five months away from his wedding when he woke up one morning paralyzed down his right side, barely able to say his fiancee’s name. An arteriovenous malformation in his brain had ruptured and he was in surgery three days later. That was thirty two years ago. Alan is now fifty seven and he will tell you he’s still recovering. Now here’s what I didn’t see coming. This story starts long before 1994. Alan was showing signs as a child and every adult around him had a tidy explanation for it. Every one of them was wrong. And nobody looked properly until he was almost twenty-five. There’s also a stretch in the middle of this conversation that I think anyone on long-term medication needs to hear. And a question Alan ended up asking himself that has nothing to do with his brain at all. If a stroke made you feel like your world got smaller, my new book. Your world doesn’t have to stay this small, is a practical guide to rebuilding your life after trauma, even when you’re not ready. Search for it on Amazon or tap the link in the show notes below. And if this show has helped you, you can support it at patreon.com/recoveryafterstroke.. Any support helps to cover the costs of the podcast to keep it going for other people to be able to find it and get the support that they need. After stroke. And now here’s my conversation with Alan Bill Gasiamis (02:06) Alan Dunworth. Welcome to the podcast. Alan Durnwirth (02:08) Thank you for having me, Bill. Bill Gasiamis (02:10) My pleasure. You are an AVM superhero. Alan Durnwirth (02:16) Ha ha ha. Bill Gasiamis (02:17) So we’ve got a special community. There’s a awesome gentleman who I interviewed, Greg Graham, who runs a podcast type thing. And he interviews AVM injury survivors and all

  4. Oct 6

    Why Waiting to Feel Ready Is Keeping Your World Small

    Post-Traumatic Growth After Stroke: Why “Ready” Isn’t a Feeling You Wait For “I’ll start again when I’m ready.” If a stroke has split your life into before and after, you’ve probably said some version of that sentence, maybe not out loud. It sounds responsible. Heal first, then live. But what if readiness isn’t a feeling that shows up first? What if it’s something you build, often while you’re still struggling? That question sits at the centre of a growing body of research on post-traumatic growth after stroke, and it’s the subject of this week’s mini-episode. The Sentence That Sounds Responsible, But Keeps People Stuck In 2012, Bill Gasiamis had a bleed in his brain at thirty-seven. A month later, he had another one. He looked fine, people kept telling him so, and he spent weeks quietly waiting for the morning he’d wake up feeling like himself again. That morning didn’t come. For most people recovering from a stroke, it doesn’t. And the longer you wait for it, the smaller your world tends to get: fewer plans, fewer risks, more of life organised around the fear of another setback. What breaks that waiting pattern usually isn’t a feeling. It’s a small, unglamorous action. For Bill, it was a search bar: a drug prescribed to reduce brain swelling was causing sleepless nights and other side effects, and one quiet morning he opened his laptop and looked up how to reduce inflammation through diet. He didn’t feel ready. He felt terrible. But that one change gave him a bit of evidence that he wasn’t helpless, and that evidence built momentum toward the next step. What 26 Studies on Growth After Trauma Found A personal story isn’t proof of a pattern, so what does the research say? In the 1990s, psychologists Richard Tedeschi and Lawrence Calhoun named this experience post-traumatic growth (PTG) and, in 1996, published the Posttraumatic Growth Inventory to measure it (Tedeschi & Calhoun, 1996). In 2019, a systematic review and meta-analysis pooled 26 of those studies. Across them, just over half of participants, about 53%, reported moderate-to-high growth after a traumatic event (Wu et al., 2019). Growth after a life-altering event is a documented, common outcome, not a rare exception. Why Growth and Distress Show Up Together Here’s where it gets counterintuitive. A reasonable assumption is that growth only arrives once the pain has passed. A 2014 meta-analysis of 42 studies and more than 11,000 people found the opposite: post-traumatic growth and post-traumatic distress symptoms tend to co-occur, and the relationship between them is curvilinear rather than a straight line, with the highest growth often reported by people who were still, in some sense, in the middle of their struggle (Shakespeare-Finch & Lurie-Beck, 2014). In other words, you don’t have to be finished hurting before you’re allowed to start growing. Life Doesn’t Queue Its Disasters Bill’s own recovery wasn’t a straight line either. In November 2014, a third brain bleed led to brain surgery, two weeks after his mother-in-law passed away. He woke up unable to walk, spent a month in inpatient rehabilitation, and took roughly seven years before returning to meaningful work. He wasn’t “ready” at any single point in that process. What changed was that he stopped waiting for readiness and learned to take the next step from wherever he was standing that day. What the Stroke-Specific Research Shows Does the pattern hold for stroke survivors specifically, not just trauma survivors generally? A 2026 systematic review and meta-regression pooled 10 studies covering 1,046 stroke survivors and found a significant, gradual increase in PTG scores with each month after discharge. The strongest correlates of growth were active cognitive processing (deliberately making sense of what happened) and social support (Klass et al., 2026). A related meta-analysis of post-traumatic growth after acquired brain injury found similar patterns: growth was associated with more time since injury, social connection, and lower depression (Grace et al., 2015). And when researchers tested structured psychosocial programs rather than waiting for growth to happen on its own, a meta-analysis of 12 randomised controlled trials found a modest but real increase in PTG (Hedges’ g = 0.36) (Roepke, 2015). Modest and real beats waiting and hoping. What This Research Doesn’t Yet Tell Us Honesty matters here as much as hope. Post-traumatic growth is common, but it isn’t universal or owed to anyone; close to half of people in these studies did not report moderate-to-high growth, and that doesn’t mean they’re doing recovery wrong. Growth is not the same as being grateful for a stroke, and it doesn’t erase grief or distress; the two can coexist. Most PTG research relies on self-report, often collected well after the event, so it tells us what people believe changed, not necessarily what changed on an objective measure. The link between social support or active coping and growth is a correlation, not proof that one causes the other. And the intervention evidence is modest, across a small number of trials, so it supports “may help,” not “will fix this.” None of this replaces professional care, particularly if distress is persistent or severe. Two Small Things to Do Before You Feel Ready If the research has a practical edge, it’s this: small, concrete action seems to matter more than waiting for the right internal state. Two places to start: name one specific area of your life where you’re currently waiting to feel ready before acting, and choose one step so small it feels almost silly, then take it today rather than waiting for tomorrow’s version of yourself. If you want to take this further with your own care team, useful questions to raise include: what kind of structured support (psychological, peer, or rehabilitation-based) is available to help with “making sense of what happened,” and what social supports in your own life could be strengthened now rather than later. Bill explores this idea at length in his new book, Your World Doesn’t Have to Stay This Small: A Practical Guide to Rebuilding Your Life After Trauma, Even When You’re Not Ready, available at mybook.to/yourworld. If stroke is your story specifically, his first book goes deeper into one survivor’s path through post-traumatic growth after stroke, and you can read more at https://recoveryafterstroke.com/book. For listeners who want to support this work directly, you can also do that 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. The post Why Waiting to Feel Ready Is Keeping Your World Small appeared first on Recovery After Stroke.

  5. Sep 29

    Learning to Cry After Stroke – Bobby Chaggar

    Crying After Stroke: What Bobby Chaggar’s Recovery Taught Him About Grief and Strength The night his stroke happened, Ramandeep “Bobby” Chaggar didn’t feel what he expected to feel. No pins and needles. No dramatic collapse. Just a left arm that wouldn’t answer him anymore.  He limped to the kitchen anyway, poured a glass of water, and brought one back for his wife because that’s what you do, even when your body has just stopped taking instructions from half of itself. It wasn’t until the ambulance service ran him through the BFAST test over the phone that the word “stroke” entered the room. A right ischaemic pontine stroke, in December 2023. He was, by his own account, in the best health of his life at the time: no blood pressure issues, no diabetes, cycling a hundred kilometres most weekends. Growing Up Believing a Stroke Meant You Were Gone Bobby grew up in an era and a family where a stroke wasn’t something you researched; it was something you heard about secondhand. “That particular cousin’s father’s grandfather had a stroke, and he’s gone,” is how the news used to travel. Nobody around him distinguished a stroke in the brain from a stroke in the heart. There was no internet to check, only the flat, final verdict that passed between relatives: he’s done for.  It’s a belief he carried into his own stroke, even as his medical training Bobby spent years as a veterinary surgeon in India before qualifying in Australia told him something else was happening. That veterinary background is exactly why he recognised what was going on in his own body faster than most people would. It didn’t make the belief disappear. It just meant he was fighting it from the inside while everyone around him was still catching up. Why His Arm Seemed to Move Then Stopped In those first disorienting hours, Bobby was convinced his arm had started moving again. He filmed it and sent the video to his sister as proof, he thought, that he was already turning a corner. By morning, the movement was gone. “It was like a bad dream,” he says. “I was like, what was that?”  What he was seeing wasn’t recovery. Doctors later explained that in the earliest hours after a stroke, the body can still fire off remnant spinal reflexes old movement patterns held in the spinal cord that can briefly activate on their own, independent of the brain damage that’s actually occurred. It’s a strange, almost cruel mechanism: the body offering a flicker of hope before the real work of recovery has even started. The Physio Who Promised Him He’d Walk Again Bobby spent 45 days in rehabilitation at Parkville, six months in a wheelchair overall, and credits one moment above almost everything else: his first physiotherapist he calls her Hannah sitting on the floor, moving his foot, and telling him he would walk again. It mattered enough that his book was originally going to be titled Walking with Hannah, before privacy considerations changed the plan. His son, who narrates the audiobook, still opens the acknowledgements by thanking her directly. Learning to Cry Again This is the part of Bobby’s story that speaks most directly to what so many stroke survivors go through and rarely say out loud. In his culture, and in his family, showing emotion, especially for the men expected to be providers and caretakers, wasn’t really an option. When his father died in 1997, he was told to be strong for his mother and sister. When his mother died in 2013, he was told the same thing again. “I’ve been told that stroke is a part of grief, and you should not suppress your feelings.” It took his brother-in-law showing up every day to help him with basic care showering, dressing, the things that felt hardest to accept before something shifted. His own psychologist eventually gave him the instruction that reframed everything: put on your own life jacket first, before you try to save anyone else. It’s advice Bobby now extends to every caregiver he talks to: the person supporting a stroke survivor needs their own support too, or they burn out trying to hold everything together. He isn’t alone in this. Bill has spoken openly on the podcast about his own experience with unexpected, involuntary crying after a neurological injury, and how much energy goes into reassuring the people around you that the tears don’t mean something is wrong. For Bobby, permission to cry didn’t erase the culture he was raised in. It just meant he stopped fighting it. A New Normal, On His Own Terms Bobby’s recovery is full of small, deliberate acts of reclaiming identity. He got his first tattoo not long after his stroke, partly, he says, because people notice ink before they notice a limp. He’s spent years slowly making peace with not tying a turban the way he used to, calling himself, with real affection, a recovering “turbanator.” He built his own incline-and-decline walking circuit near his home and quietly upped the difficulty every fortnight, the same instinct that now has him choosing stairs over the lift at the allied health course he’s completing. Running, he says flatly, is overrated. He can’t do it anymore, and he’s decided that’s fine. It’s the same acceptance that let him and his family move to Perth just one month after his stroke, and then move back again when isolation made the recovery harder than the geography ever was.  None of it looks like the version of recovery he grew up believing in, the one where a stroke simply meant a story was over. Bobby’s version has a motorbike with a sidecar he now rides himself, a book he wrote one voice note at a time because typing with one hand wasn’t fast enough, and a fairly simple message for anyone who asked him to just think positively: some things are still hard, and that’s allowed to be true at the same time as everything else.  If you’re navigating your own recovery or supporting someone who is, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened (recoveryafterstroke.com/book), walks through ten practical tools for rebuilding after a stroke. And if trauma has made your world feel smaller than it used to be, Bill’s newest book, Your World Doesn’t Have to Stay This Small, is written for exactly that.  If this episode helped you, you can support the show directly 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. Bobby Chaggar: Learning to Cry After Stroke (Interview) He was taught a stroke meant you were gone. Bobby Chaggar’s story proves otherwise and shows why crying after a stroke is nothing to hide. Highlights: 00:00 Introduction 02:00 Life Before the Stroke 09:28 Rehabilitation Journey 12:00 Crying After Stroke 14:52 Reflections on Recovery and Growth 26:33 The Promise of Recovery and Writing a Book 29:37 Cultural Identity and Personal Beliefs 37:28 Relocation and Its Challenges 41:44 The Importance of Caregiver Self-Care 44:10 Adjusting to a New Normal 51:09 The Journey of Riding Again 57:09 Bobby’s Journey of Unlearning and Grief Transcript: Introduction – Crying after stroke Ramandeep (bobby) chaggar (00:00) I realized that I was having a stroke. because it was not their usual pins and needles and there was no sensation. I couldn’t move my arm. I managed to limp. I went all the way to the kitchen. I trudged a little to the kitchen. I had a glass of water, brought a glass for my wife. in the hospital, I thought my arm started moving. And the doctors, and when I got up in the morning, it was like a bad dream. No, it was not moving again. So I was like, what was that? Bill Gasiamis (00:19) Welcome back to Recovery After Stroke. I’m Bill Gasiamis and today I’m talking with Bobby Chaggar, a veterinary surgeon originally from India, now living in Melbourne, who survived a right ischemic pontain stroke in December 2023. Bobby’s story covers a lot of ground, the cultural belief he grew up with, that a stroke simply meant you were gone. The strange confusion of a spinal reflex that made his arm move before it didn’t. Physiotherapist whose promise changed the course of recovery and what it actually took for him as a man raised to be the strong one to let himself cry. Before we get into it, if trauma has made your world feel smaller than it used to be, my new book, Your World Doesn’t Have to Stay This Small, is exactly what it’s about. Search for it on Amazon or tap the link in the show notes to grab your copy today. And one more thing, this show exists because listeners decide it’s worth keeping going. There’s no other funding behind it. If an episode like this one has ever helped you or helped someone you love, even a few dollars a month on Patreon is what keeps these conversations free for the next person who finds themselves Googling this stuff alone at two in the morning, scared, looking for someone who’s actually been through it. That’s all. patreon.com/recoveryafterstroke.. A small amount every month makes a massive difference. But now let’s get into it. Here’s my conversation with Bobby. Bill Gasiamis (01:56) Bobby Chaggar. Welcome to the podcast. Ramandeep (bobby) chaggar (01:58) Thank you very much. Thank you. Thank you, Bill. Life Before the Stroke Bill Gasiamis (02:00) So you grew up in a house with 22 dogs, three cats and a trilingual parrot as well, right? So what’s the situation there? You’re living with pets. Were you important in your family or Ramandeep (bobby) chaggar (02:10) Ha ha. Bill Gasiamis (02:11) did the animals come first? Ramandeep (bobby) chaggar (02:14) the animals definitely did come first. my mother was also a teacher, but she decided to stay at home and be a stay you know, stay a worker from home mom for for the for the kids. And my parents never

  6. Sep 25

    He Was 16 When a Stroke Ended His Football Career – Benjamin Miller on Identity, Substances, and Finding His Way Back

    Teenage Stroke: When Recovery Feels Like Losing Yourself Benjamin Miller was 16 years old and playing football in Texas when a carotid artery dissection changed the course of his life on September 22, 2017. He didn’t know what a stroke was. He didn’t know that the word would come to define the years that followed not because of what it took from his body, but because of what it took from his sense of who he was. Teenage stroke recovery is not what most people picture. The standard narrative runs like this: young brain, high neuroplasticity, rapid recovery, inspirational outcome. And in some ways, that’s true. The motor and language systems that stroke damages can rebuild quickly in an adolescent brain. But there’s a part of recovery that neuroplasticity doesn’t touch, and that’s identity. Who Was Benjamin Before the Stroke? He was a football player. In Texas, that means something. It means a community, a future, a sense of place in the social architecture of a town. When the stroke took that away, it didn’t just end a sport. It ended a version of himself that he hadn’t finished becoming. “My soul was torn in half,” Benjamin said in this conversation with Bill Gasiamis. It’s one of those phrases that stops you not because it’s dramatic, but because it’s accurate. “My soul was torn in half.” — Benjamin Miller, EP422 The stroke forced him to grieve something most 16-year-olds don’t have language for: the future self they were building toward. When that future collapsed overnight, he was left with a present he didn’t recognise and a past that no longer pointed toward anything. Why Teenage Stroke Is Different Teenage stroke recovery carries a layer of complexity that adult stroke recovery doesn’t always share. Adolescence is the developmental period in which identity is actively constructed; it’s not a fixed thing waiting to be restored. When stroke interrupts that process mid-construction, the survivor isn’t returning to who they were. They’re trying to become someone they haven’t yet figured out how to be. Benjamin’s experience of turning to substance use during his recovery wasn’t a character failure. It was, as he articulates in this episode, an attempt to manage an identity fracture that nobody around him had the vocabulary to name. When the pain doesn’t have a name, people find their own ways to survive it. This is one reason teenage stroke recovery deserves its own conversation separate from paediatric stroke outcome data, and separate from the adult recovery narrative. The emotional, psychological, and social dimensions are specific to this life stage. You might also recognise elements of this in other episodes: the identity rupture that follows sudden stroke in a young person surfaces in Young Stroke Survivor Recovery and Identity Loss After Stroke. Benjamin’s story adds a dimension that’s less often named: what happens when the loss of identity happens before you’ve finished building one. When the Brain Heals Faster Than the Self Can Here’s something worth naming a phenomenon the clinical literature notes but rarely centres in recovery conversations. Adolescent neuroplasticity is real. Benjamin’s brain had the capacity to rebuild physical and linguistic function faster than an older adult’s would. But neuroplasticity is a structural property of the brain. It doesn’t extend to the psychological work of integrating a traumatic experience into a developing sense of self. The result is a gap, sometimes a wide one, between the physical recovery that others can see and the internal recovery that isn’t visible at all. Benjamin appeared to be “doing well” in many respects while internally carrying a fracture that hadn’t been addressed. This gap is one of the least-discussed aspects of teenage stroke recovery. If you’ve experienced it, or watched someone you love experience it, it may be the most important thing in this episode. The Road Back And What It Actually Looks Like Benjamin’s memoir, Ed and I, available on YouTube, traces this journey. What comes through clearly in his conversation with Bill is that the path forward required him to walk through the things he’d been managing around the grief, the identity loss, the fracture itself. Recovery, in his telling, doesn’t take you back to who you were. It takes you through who you are now. That reframe from restoration to transformation is one that many stroke survivors eventually arrive at. Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened documents ten tools for exactly that kind of recovery. For more episodes touching on identity and recovery: Emotional Recovery After Stroke Mistakes, Identity After Stroke — Cassie Jewell, Stroke With No Warning Signs — Tom Ballo, Losing Confidence After Stroke, and Stroke Brain Healing Neuroplasticity. Listen to EP422 This episode doesn’t pretend that recovery is a clean arc or that there’s a single turning point you can point to. What it offers instead is something more honest: the lived texture of finding yourself again when you’re not sure who you’re finding your way back to. Listen to EP422 of the Recovery After Stroke podcast wherever you listen. If a stroke or any trauma has made your world feel smaller, Bill’s new book Your World Doesn’t Have to Stay This Small is a practical guide to rebuilding your life, even when you’re not ready. Find it on Amazon at mybook.to/yourworld. If this show has helped you, you can support it 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. Benjamin Miller on Identity, Substances, and Finding His Way Back “My soul was torn in half.” Benjamin Miller had a stroke at 16 and lost more than football here’s how he found his way back. Highlights: 00:00 Introduction – Teenage Stroke09:01 The Day of the Stroke11:56 The Loss of Identity17:12 Coping Mechanisms: Alcohol and Escapism22:37 COVID-19: A Blessing in Disguise28:57 The Journey of Healing Begins32:40 Facing Uncomfortable Emotions38:45 Spiritual Awakening Through Adversity42:34 The Power of Breath and Movement47:35 Building Community in Recovery55:39 Finding Belonging and Understanding59:12 Creating a Path for Self-Healing Transcript: Introduction – Teenage Stroke Benjamin Miller (00:00)when I was told that by my father that. It felt like my soul was torn in half, because like I always saw myself as a student athlete and the bigger part of that was the athlete. And now I lost half of my identity and. I just didn’t know how to as a. 17 year old now like how to move forward with life and I didn’t know who I was and the only thing I defined myself as was taken away from me So now I was just like in this weird place where I felt like I was drowning on a day-to-day basis. Bill Gasiamis (00:33)hello, everybody. Welcome back to Recovery After Stroke. I’m Bill Gasciamas. My guest today had a stroke at just 16 years old, a carotid artery dissection that ended his football career and cracked his sense of who he was, right at the age when most people are just beginning to figure that out. Before we get into it, if you’ve been finding value in this podcast, my new book is out now. It’s called Your World Doesn’t Have to Stay This Small. A practical guide to rebuilding your life after trauma even when you’re not ready. You can find it on Amazon by searching my name or you can click the link in the show notes. Now it’s on to the episode. Bill Gasiamis (01:14)Benjamin Miller, welcome to the podcast. Benjamin Miller (01:16)Sir, thank you for having me. Bill Gasiamis (01:19)Tell me what’s regular life like for you before the stroke? Benjamin Miller (01:26)Yeah, I mean, when I had my stroke, I was 16 years old and I was in my third year of high school. So it was really comprised of just school, going to school every day and then playing sports after school. Like through the school, would play American football. I played baseball earlier in my life. And then towards the end of my high school, I just continued to play American football because I had the goal of following in my two older brother’s footsteps. for playing football, American football, in college at that time. So I just saw myself as following their path and going to play college football. And that’s what I was chasing throughout high school. Bill Gasiamis (02:09)How long ago was that? The stroke? Benjamin Miller (02:12)It was 2017, the fall of 2017. So Bill Gasiamis (02:16)Okay. Benjamin Miller (02:16)coming up on nine years on the 22nd of September. Bill Gasiamis (02:23)I I expect that stroke is the last thing going through the mind of a sixteen year old and the family of a sixteen year old. So Benjamin Miller (02:34)Yeah. Bill Gasiamis (02:34)w do you have any recollection of what it was like on the day of the stroke? Was there some kind of sign, was there anything that gave you an inkling of something being wrong before everything happened? Benjamin Miller (02:53)maybe like right before, because just playing American football, you’re always hear about head trauma and just CTE and concussions. And that’s always the biggest worry for playing football. But it was during the game that Friday night, it was the second game of our football season. And it was in between the first quarter and second quarter. And I came over to the bench and like in between going back on the field, our coach like brings the offense or defensive units together and we like talk about any in-game adjustments and I came over and sat down on the bench and I just noticed my balance like start to tip like I was having to stare down at my feet in order to stop myself from falling over an

  7. Sep 21

    Losing My Career and Myself, Then Choosing Who I’d Be – Cassie Jewell

    Identity After Stroke: Who Are You When Your Career Is Gone? Cassie Jewell got back from Iceland on a Monday. On Wednesday, she was demoted from the job she had built her life around. On Friday, she was in an ambulance with a stroke. She was 42, a licensed counsellor supervising behavioural health programs inside a US jail. She loved working with inmates and took two or three extra hours of work home most nights. “My entire identity was my career,” she told me. Within a single week, she lost the role and nearly lost her life. Her story shows something many survivors struggle to name: identity after stroke isn’t only about what your body can still do. It’s about who you are when the roles you relied on are gone. The Week Everything Changed On the Thursday night after the demotion, Cassie stayed up writing a book, determined to prove she still mattered. As she typed, her left hand stopped working. She put it down to tiredness and went to bed. She woke the next afternoon knowing something was wrong but not what. She decided it was a panic attack. Then she remembered her hand. She texted her mum, a nurse practitioner, who told her to call 911 and ask for a hospital with a stroke centre. When the paramedics arrived asking for the stroke patient, Cassie was the one who had answered the door. One side of her face was drooping and her left side was weakening. The diagnosis was an ischaemic stroke in the right basal ganglia, a deep brain region involved in movement, balance and, as she discovered, emotional regulation. If you want to understand this area of the brain better, our episode on lower basal ganglia stroke (https://recoveryafterstroke.com/lower-basal-ganglia-stroke/) goes deeper. Her doctors told her stress contributes to stroke rather than causing it directly, and her cardiologist is still monitoring her heart rhythm. Cassie has her own view: “I was literally burning myself to the ground… and then my brain was like, okay, we’ve had enough. We’re gonna stop you.” It’s a theme we’ve explored before in stroke and stress (https://recoveryafterstroke.com/stroke-and-stress-darren-walker/). When Your Brain Tells You You’re Fine The day after her stroke, Cassie tried to go to work. Her mum stopped her. Later, before she was cleared to drive, she got behind the wheel and bumped another car on her first day out. There’s a name for part of what was happening: anosognosia. It describes reduced awareness of your own deficits after a brain injury, and it’s more often associated with right-hemisphere strokes like Cassie’s. It isn’t stubbornness or denial; it’s a symptom of the injury itself, which is why a survivor can sincerely insist they’re okay while the people around them can see otherwise. Cassie summed up that period in one line: “It’s fine, it’s gonna be fine, even though it clearly, you know, wasn’t fine.” For families, understanding it can turn an argument into patience. Why Identity After Stroke Hits So Hard Identity is built from what we do, the roles we hold, and the stories we tell about ourselves, and a stroke can remove several at once. The more tightly your sense of self is tied to a single role, the larger the gap it leaves. “I lost my career and myself at the same time,” Cassie said. Her first job after returning to work didn’t last. She found she wasn’t as quick as she used to be, and that raised a harder question: “When you measure your self-worth in the things that you do… and then all of a sudden you don’t have your career anymore, who are you?” I recognised that question. Before my own strokes, I was a business owner and a dad, and I couldn’t have told you anything about myself beyond those labels. I didn’t have the vocabulary for identity loss. Guests such as Adam Wolfers (https://recoveryafterstroke.com/cerebral-vasculitis-stroke-identity-change-adam-wolfers/) have described the same collision between who they were and who they now are, and anyone weighing up work decisions may find our episode on changing career after stroke (https://recoveryafterstroke.com/change-career-after-stroke/) useful. The emotional side can catch even a professional off guard. “You’d think as a therapist I would be good with it,” Cassie said, “but I’d prefer to deal with other people’s emotions, not my own.” Our conversation about emotional changes after stroke (https://recoveryafterstroke.com/emotional-changes-after-stroke-sam-hanes/) explores this further. Choosing Who You Become Eighteen months on, Cassie doesn’t have an elevator pitch for who she is. She’s clearer about who she isn’t: someone driven by work. She values free time, her partner, and her dogs. She works full time doing intake assessments and sees private clients, and she describes herself this way: “I’m not as sharp as I was before, but I think I’m kinder.” A stroke, she says, “strips away everything else so you have nothing left but yourself,” and then “you can also choose what your new identity is gonna be.” That choice matters most. For most of my life I did what I’d been trained to do; it took a stroke to show me I could choose differently. Researchers Richard Tedeschi and Lawrence Calhoun called this post-traumatic growth: positive change that comes from the struggle with a traumatic event, not from the event itself. Cassie put it in her own words: “It’s not about the stroke. It’s about, okay, what am I gonna choose to do now?” It’s the idea at the centre of my book, The Unexpected Way That A Stroke Became The Best Thing That Happened (https://recoveryafterstroke.com/book). Practical Ways to Rebuild Identity After Stroke Drawing on Cassie’s story, here are a few starting points: Separate what you do from who you are. Write down your values, not your job titles. Values survive a stroke better than roles do. Give it time. For me, it took a few years before I could say I liked the person I’d become. Early recovery is rarely the time to decide who you’ll be forever. Let people you trust be your early-warning system. Cassie’s partner noticed her overwork long before she did, and her mum recognised the stroke symptoms. With anosognosia in the picture, other people’s observations matter. Replace old coping habits, don’t just remove them. Recovery is a chance to swap quick fixes for stress for ones that last. Use time as a lens. Cassie is reading Four Thousand Weeks by Oliver Burkeman and aims to visit all 195 countries. Find people who understand. Other survivors often give you the words for your experience. Our episode on finding purpose after stroke (https://recoveryafterstroke.com/finding-purpose-after-stroke/) is a good next listen. Listen to Cassie’s Full Story Watch or listen to the full conversation with Cassie Jewell. You can find more of her work at cassie-jewell.com (https://cassie-jewell.com). If a stroke has left your world feeling smaller, my new book, Your World Doesn’t Have to Stay This Small (https://mybook.to/yourworld), is a practical guide to rebuilding your life after trauma, even when you’re not ready. If this show has helped you, you can support it 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. Losing My Career and Myself, Then Choosing Who I’d Be – Cassie Jewell (Interview) A stroke at 42 took Cassie Jewell’s career and the identity built on it. What she found underneath changed how she works, loves, and travels. Highlights: 00:00 Introduction – Cassie’s Identity After Stroke 01:08 Life Before the Stroke 09:35 The Day of the Stroke 23:02 Aftermath and Recovery 28:41 Hospitalization and Rehabilitation Journey 32:04 Dissociation and Identity Post-Stroke 38:12 Life After Stroke: Adjusting to New Realities 50:32 How Stroke Forced Me to Discover Who I Really Am 01:02:14 The Dual Nature of Stroke Experiences Transcript: Introduction – Cassie’s Identity After Stroke Bill Gasiamis (00:00) Hi everyone, welcome back to Recovery After Stroke. I’m Bill Gassiamis. My guest today is Cassie Jewell, a counselor and author from the United States, who in February of 2025 at 42 had an ischemic stroke in the right basal ganglia. In the same week, she was moved out of the role she had built her whole identity around. We talk about perfectionism and the overwork loop that’s so hard to step out of. Why she tried to go back to work the day after her stroke, a condition called anosognosia. And the question at the heart of this episode: who are you when your career is gone? Now, if stroke has made your world feel smaller, my book is written for you. It’s called Your World Doesn’t Have to Stay This Small: A Practical Guide to Rebuilding Your Life After Trauma, Even When You’re Not Ready. Search for it on Amazon or tap the link in the show notes. And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. And a massive thank you to everyone who already supports the show. You’re the reason these conversations keep happening. And now it’s time for the interview. Life Before the Stroke Bill Gasiamis (01:08) Cassie Jewell, welcome to the podcast. Cassie (01:10) Hi, how are you? Bill Gasiamis (01:12) I’m well. Thank you. Great to see you here. I really appreciate you joining me. I want to ask you a little bit about what your life was like before the stroke. What did you get up to? How did you occupy your time? Cassie (01:26) So my life was out of control before the stroke. I was working at a jail and it was a super stressful position. it was just stress all the time. I had a really bad supervisor too, a micromanager. but I also that wasn’t the only part of my life. I traveled a lot. I don’t know. It’s hard to even think about it now, honestly. Bill Gasiamis (01:54) How long

  8. Sep 8

    Stroke With No Warning Signs – Tom Ballo’s One Bad Day in Eighteen Months

    Stroke With No Warning Signs: What Tom Ballo Wants Every Survivor to Know Tom Ballo was 65 years old, nine years into a retirement he’d earned across three decades as a telecoms litigator, when a massive hemorrhagic stroke put him on the floor of his own home. There was no dizziness the week before, no slurred word he brushed off, no doctor’s visit he postponed. “It just hit me out of the blue,” he says. “There were no warning signs or anything. No. Very sudden.” His five-year-old granddaughter was the one who found him, ran to get her father, and called 911. That single fact- a stroke with no warning signs is the hardest one for a survivor’s family to sit with, and it’s the reason Tom’s story matters. We’re trained to look for a prodrome: the TIA that precedes the “real” event, the slurred speech, the drooping face, the classic FAST checklist. Those signs save lives when they’re present. But a meaningful share of hemorrhagic strokes, including Tom’s, give no such courtesy. Understanding this isn’t about inducing fear; it’s about removing the false comfort of “I’d definitely see it coming,” which quietly stops people from taking risk factors seriously simply because they feel fine right now. Eighteen Months Later: “I Had Like One Bad Day” What makes Tom an unusual guest isn’t just the suddenness of his stroke — it’s what he says about the recovery. Eighteen months out, he offers a claim that stops most interviewers in their tracks: “Ever since I had the stroke, as far as bad days, I had like one. One bad day, I guess.” For a show built around the long, uneven work of recovery, that’s either the most useful sentence a newly diagnosed survivor will hear all year, or the most worth interrogating. We chose not to resolve that tension neatly, because Tom doesn’t either — and that honesty is more useful to you than a tidy takeaway would be. “Ever since I had the stroke, as far as bad days, I had like one. One bad day, I guess.” — Tom Ballo Part of what underwrites his outlook is a framework he leaned on well before the stroke: self-actualisation, drawn from Abraham Maslow’s 1943 hierarchy of needs. Tom describes himself as someone who had already done the internal work of knowing who he was — a foundation he credits with much of his composure now. It’s worth a caveat here for accuracy: Maslow’s hierarchy is a theory of motivation, not a diagnostic instrument, and there’s no validated test that certifies someone “self-actualised.” What Tom is really describing is a stable sense of identity going into the hardest thing that ever happened to him — and that’s a legitimate, replicable idea, whether or not you use Maslow’s language for it. The Part That Doesn’t Get Easier “One bad day” is not the same as “no hard days,” and the interview doesn’t pretend otherwise. Tom is candid that spasticity the stiffness and involuntary muscle tightness that often follows a hemorrhagic stroke is getting worse, not better, as he moves further from the event. This is a pattern a lot of survivors will recognise, and few outsiders expect: the assumption is that time only heals, when in practice some deficits plateau, some improve, and some, like spasticity, can progress. If you’re eighteen months, three years, five years out and still watching a symptom evolve, Tom’s experience is a useful, unglamorous data point that you are not doing recovery wrong. There’s a quieter data point too, and it cuts the other way: Tom says he hasn’t had a bad night’s sleep since the day of the stroke. For an audience where post-stroke fatigue and insomnia are close to universal, that’s a genuine outlier worth naming precisely because it complicates any single story about what stroke recovery “typically” looks like. What Changed at Home The practical texture of Tom’s recovery runs through his family: the granddaughter who acted fast, the wife who stepped in to run the household during the hardest stretch, the shift from being the one who handled everything to being the one who’s learned, in his words, that “it’s kind of a blessing” to do less. He’s candid that he hasn’t driven since the stroke and says he doesn’t feel a pull to change that. There’s no performance of getting back to “normal” here — just an honest account of a life that reorganised itself around new limits, some of which he’s made peace with and some of which, like the spasticity, he’s still working out how to hold. Why This Story Is Worth Sitting With If you came to this looking for a checklist of warning signs, Tom’s story won’t give you one, and that’s the point. Some strokes, including major hemorrhagic ones, arrive without a warning a person could reasonably have caught. What you can control is what happens after: how quickly the people around you act (his granddaughter didn’t hesitate), how you rebuild a working identity in the aftermath, and how honestly you track what’s actually getting better versus what’s quietly getting harder. Tom’s “one bad day” isn’t a promise you’ll get the same outcome. It’s permission to notice what’s still working, even while something else spasticity, driving, the parts of independence you used to take for granted hasn’t resolved yet. If Tom’s story raises questions about your own recovery, or a loved one’s, that’s exactly the conversation this show exists to have. You can go deeper into the ideas behind post-traumatic growth after stroke in Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened (recoveryafterstroke.com/book), and if this kind of interview is valuable to you, the show runs in part on listener support 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. Stroke With No Warning Signs – Tom Ballo’s One Bad Day in Eighteen Months He had zero warning signs before his stroke at 65. Eighteen months later, Tom Ballo says he’s had exactly one bad day. Highlights: 00:00 Stroke with no warning signs 03:25 What kind of stroke was it 08:18 Learning to talk and walk again 11:42 Does he have aphasia? 17:46 One bad day in eighteen months 27:15 The symptom that’s getting worse 33:20 The one thing that hasn’t changed Transcript: Stroke with no warning signs Tom Ballo (00:00) it just hit me out of the blue. It hit me out of the blue. There were no warning signs or anything. No. very sudden. luckily, my youngest granddaughter was there. My young granddaughter, she was five years old. She was there and I guess she saw me and she went and got her dad, who’s my son-in-law. They were living with us. At the time we had a big house and he told him, she told him and he came down and called 911 right away. Bill Gasiamis (00:39) Welcome back to Recovery After Stroke. I’m Bill Garciamas, and today’s guest is a genuinely different kind of conversation for the show. Tom Ballo spent 32 years as a telecoms litigator, retired at 56 to actually enjoy it, and nine years later, at 65, a massive hemorrhagic stroke hit him with absolutely no warning. His five-year-old granddaughter is the one who found him and got help. What you’re about to hear is a conversation that moves differently than most on this show. Tom takes his time, getting to his words, and there’s a real compassion and openness in the way he talks about what happened to him. No performance, no polish. Just the man being honest about where he’s landed 18 months on. Stay with the pace of it. That pace is part of what he’s telling you. We’re going to get into what he calls one bad day in 18 months, what’s actually gotten harder rather than easier, and what he’s learnt about who he already was before any of this happened. Remember to grab a copy of my book, The Unexpected Way That a Stroke Became the Best. thing that happened at recoveryafterstroke.com/book It’s the 10 tools I used to build my own recovery. And a lot of what Tom describes today connects straight back to it. And guys, if this show has helped you, remember you can support the show directly at Patreon by going to patreon.com/recoveryafterstroke and making a small monthly contribution. It helps cover costs of recording, editing and hosting the podcast. Bill Gasiamis (02:16) Tom Ballo, welcome to the podcast. Tom Ballo (02:18) Thank you. Glad to be here. Bill Gasiamis (02:19) Tell me a little bit about what occupied your time before stroke. Tom Ballo (02:24) Well, I retired, retired 10 years ago. So I was well acclimated to that. And I mostly doing, I had a YouTube channel. It it’s called GTA5 and Squirrels. And I said, make recordings of Grand Theft Auto V video game, really interesting videos. And then I got some squirrels that were living next to the house and one of them started was really… friendly. He kept walking up to me and finally started climbing up me and I started feeding him and I was making videos of videos of that. What kind of stroke was it Tom Ballo (03:19) I had over 1500 subscribers and 1 million views. And the whole channel just hit 1 million. Bill Gasiamis (03:30) And y you used to play GTA, Grand Theft Auto. Was it your favourite game? So you’re doing that in your retirement before you retire retired, what were you doing for a living? Tom Ballo (03:40) I was a lawyer for a real, real large telephone company for 32 years. I was a litigator and regulatory law, so it was administrative law, I was, it was just, it was cases, and they were the biggest cases that affected the company. About nine years. Bill Gasiamis (04:06) Yeah. Tom Ballo (04:07) That was one reason I retired early. I retired at age 56 and I just wanted to make sure I had time to enjoy retirement. I didn’t want to work until I died or would ha

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About

A Community And Podcast For Stroke Survivors And Carers

Information

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

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