Recovery After Stroke

Carotid Dissection Symptoms: The Sore Neck Rob Shepard Almost Ignored Written by Bill Gasiamis, a three-time stroke survivor and host of the Recovery After Stroke podcast. At 1:00 am on 8 December 2025, Rob Shepard was in a New Orleans hotel room, coughing. He was 41, an industrial-organisational psychologist on a work trip, and he and his wife Chelsea had just spent a full day exploring the city. He got up to find some cough medicine, slumped onto his left side, and tried to speak. Chelsea, who used to work in hospitals, told him he’d better say something clearly or she was calling 911. He couldn’t. She made the call. Rob received a clot-busting drug and a thrombectomy. The week before, he’d travelled alone. “If it would have happened in the hotel room when I was by myself,” he told me, “I don’t think I’d be here talking to you today.” The Sore Neck That Wasn’t a Sore Neck Most of us assume neck pain after lifting something heavy is a muscle problem. A few days, maybe some heat, and it goes away. That’s what Rob assumed. In the weeks before his stroke, he and Chelsea had been moving furniture around the house, and his neck was sore. Then he caught a virus with a cough that lasted a week or two. “I just thought, I’m getting older, I shouldn’t be lifting all this heavy stuff. Maybe I slept wrong.” The neck pain wasn’t muscular. One of the arteries in his neck had a tear in its wall: a carotid artery dissection. When the inner lining of the artery tears, blood can collect inside the wall, narrow the vessel, and form a clot. Doctors believe the force of his coughing eventually sent that clot to his brain. “I honestly never even heard of a carotid artery dissection until it happened to me,” Rob said. He’s far from alone in that. Carotid Dissection Symptoms Worth Knowing Carotid dissection symptoms are often easy to explain away, which is exactly why they’re missed. In a study of 259 people with spontaneous cervical artery dissection, almost 80% had head or neck pain, and in about 70% of cases those local symptoms appeared before any stroke or TIA. Symptoms can include: Pain on one side of the neck, face, or head, sometimes building in intensity A drooping eyelid and a smaller pupil on one side (Horner’s syndrome) A pulsing, whooshing sound in one ear (pulsatile tinnitus) Brief vision loss or other visual disturbance Stroke signs: weakness or numbness on one side, slurred speech, facial droop A dissection can follow obvious trauma like a car accident, but it can also follow something as minor as coughing, sneezing, or a sudden neck movement, or happen spontaneously. People with carotid (rather than vertebral) dissection are more likely to have had a recent infection, which fits Rob’s story closely. If neck pain arrives with any of the signs above, treat it as an emergency and call your local emergency number. Why Younger Adults Miss the Signs Cervical artery dissection is the most common single cause of ischaemic stroke in young adults, accounting for around 20% of cases. Across more than 420 conversations on this podcast, I’ve heard some version of Rob’s story many times: a cough, a sneeze, a stiff neck, a trip to the chiropractor, and then a stroke nobody saw coming. You can hear another one in Annika Luke’s carotid artery dissection recovery story. Part of the problem is expectation. “When you picture a stroke, you picture someone in their seventies, eighties, nineties,” Rob said, “not someone in their forties.” At 41, confusion at 1 am looks like tiredness. Plenty of younger stroke survivors know that thinking. Rehab Ends. Then What? Rob spent 23 days between the ICU, acute care, and inpatient rehab, across the country from his daughters and his home in Idaho, over Christmas. He flew home on New Year’s Eve. His leg came back quickly. His left hand is still catching up. But the physical side wasn’t the hardest part. “There seems to be like a good plan for the physical side,” he said. “But the mental and cognitive and identity piece… it’s not as clear.” He went back to work after six months and found the cognitive fatigue too much by the afternoon. Crowds became overwhelming. And after an ER misread a scan and told his family he’d had a second stroke, corrected by his neurologist the next day, the “what if” fear settled in. His dissected artery is now fully blocked, with other vessels supplying that side of his brain. If fatigue is shaping your days too, these strategies for managing fatigue after stroke are worth a look. “Just because you can’t do something the same way doesn’t mean that those values are gone.” — Rob Shepard A Job Description for a Life Nobody Trained You For Rob spent his career analysing jobs, working out what each role demands and matching the right people to it. After his stroke, he realised his new life was, in effect, a new job, and it had no job description. So he wrote one. Who You Are Now: A Stroke Survivor’s Guide to Becoming Who You Are Now is a short, practical workbook that takes survivors through: Naming what happened, including permission to grieve. Many survivors feel they should simply be grateful, and Rob makes room for both. (More on that in our episode on grief after stroke.) Untangling identity from ability. A stroke can take roles; it rarely takes values. A section for survivor and caregiver together, so both people can say what they’ve been carrying. (See also relationships after stroke.) Monthly check-ins, because recovery doesn’t end on a set date. It comes as a fillable digital version and a paperback on Amazon, plus a read-aloud online version. Find it, and a free reflection sheet, at whoyouarenow.com, and follow Rob on Facebook and Instagram. If identity is the part you’re stuck on, you might also find Cassie Jewell’s episode on identity after stroke helpful. Retiring the Word “Back” One exercise stood out to me: retire the word “back.” “Who I am today is never going to be the same as who I was on December seventh,” Rob said. “My hundred percent today is gonna be completely different than my hundred percent was the day before the stroke.” Chasing your old life keeps you looking backward. Redesigning lets you build a life that fits who you are now, and even shows you what you don’t want to carry forward. According to Chelsea, Rob 2.0 is also a better cook. Where to Go From Here 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’re not ready. For the ten tools that shaped my own recovery, read The Unexpected Way That A Stroke Became The Best Thing That Happened. And 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. Robert Shepard: Who You Are Now – Rebuilding Your Identity After a Stroke at 41 A sore neck, a bad cough, then a stroke at 41. Rob Shepard rebuilt his life by retiring one word: back. Highlights: 00:00 Life on autopilot at 41 03:49 Just a sore neck? 06:46 What if she hadn’t been there? 15:04 Why “I’m ready” wasn’t true 17:38 Who plans for the identity part? 29:01 Told he’d had a second stroke 31:56 No job description for survivors 42:41 Why retire the word “back”? Transcript: Life on autopilot at 41 Robert Shepard (00:00)it took a while to realize that who I am today is never going to be the same as who I was on December seventh, the day before this happened. Um Bill Gasiamis (00:07)Hello and welcome to Recovery After Stroke. I’m Bill Gasiamis My guest today is Robert Shepard. Rob is an industrial organizational psychologist from Idaho, and at 41, on a work trip to New Orleans, he had an ischemic stroke caused by a carotid artery dissection, a tear in an artery in his neck that he’d been putting down to a sore neck from moving furniture. We talk about the warning signs that are so easy to explain away. While the fatigue sent him back off work, The ER misread that told his family he’d had a second stroke. And the part of recovery nobody had a plan for. Working out who you are now. If a stroke has made your world feel smaller, my 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. And a quick word on how this show keeps going. Recovery After Stroke has no hospital, charity, or big organization behind it. Every episode, the recording, the editing, the hosting, and getting it out to every platform is paid for by listeners who support it on Patreon. If this show has helped you, you can support it at patreon.com/recoveryafterstroke. So the next person searching at 2 a.m. finds a conversation like this one when they need it most. Now let’s meet Rob. Bill Gasiamis (01:36)Robert Shepard, welcome to the podcast. Robert Shepard (01:39)I will, thank you. Bill Gasiamis (01:41)Tell me Robert, what was life like before stroke? Robert Shepard (01:46)so I I thought I thought life was going good. I was working and then husband, father of two, so it was just kind of like on autopilot and then stroke definitely interrupted that. Bill Gasiamis (01:58)What space were you working in? What kind of work were you doing? Robert Shepard (02:02)I’m an industrial organizational psychologist, so it’s kind of a combination of like business and psychology. So most of my career I’ve spent um analyzing jobs and then creating tests and assessments to put those individuals into the jobs. Bill Gasiamis (02:18)Uh, pretty full on cognitive kind of role. Robert Shepard (02:21)Yes. Bill Gasiamis (02:23)And how old were the children at the time? Robert Shepard (02:26)at the time they were um ten and thirteen. Bill Gasiamis (02:30)So just coming into teenage years.

Relationships After Stroke: How One Couple Went From Patient and Caregiver Back to Partners   Relationships After Stroke: At 35, Brandon Taylor was a football coach with a team he loved, a relationship coach by profession, and a father of seven, with an eighth on the way. When his doctor rang to say his test results were bad and he needed to go to the emergency department that day, Brandon said no. He’d promised his boys a Royals game. A few days later, he was admitted. Overnight in the ICU, he had multiple strokes in his sleep: around 11 infarcts across seven parts of his brain, on both sides. His wife, Lindsey, was eight months pregnant, with seven children at home. When he was discharged from inpatient rehab seven weeks later, he still needed three people to help him move. He started outpatient rehab on a Monday. On the Tuesday, Lindsey went into the hospital and had the baby. Most stroke stories follow the body: the walking, the talking, the arm that won’t cooperate. This one follows something rehab rarely asks about, which is what happens to the relationship. What changes in a relationship after stroke When one partner has a stroke, both lives change, but not in the same way. One person becomes the patient. The other becomes the caregiver, often overnight and with no training. Lindsey describes two moments that hit hard. The first was arriving home and realising this is for real, this is forever. The second came months later, when the support faded and friends went back to their own lives. As Brandon puts it, the work ahead was clear: “You have to get fired from patient and caregiver and become care partners again.” That’s harder than it sounds. In Lindsey’s experience, rehab focuses on functional recovery. There’s support for survivors and separate support for caregivers, but very few places where a couple sits in the same room and works out what the stroke has done to them. If you’re the partner reading this, you might relate to what it’s like when your husband has a stroke [link: https://recoveryafterstroke.com/my-husband-had-a-stroke/], and to the wider challenges facing stroke caregivers [link: https://recoveryafterstroke.com/stroke-caregivers/]. Can a caregiver just switch it off? Most of us assume that once someone is medically safe, the person caring for them can step out of that role when they choose. Take the medication, tick the boxes, and you’re husband and wife for the evening. Brandon tested that assumption. He planned a date: a taxi so Lindsey didn’t have to drive, a dress for her, dinner out. On the way home, she was drawing hearts on his hands. Back in the bedroom, the first thing she asked was, “Have you taken your medicine?” He had, at the restaurant. But the question put him straight back into the role of patient, so he rolled over and said, “Let’s just go to bed.” Lindsey says they both went to sleep sad that night. Lindsey has a name for what happened: hypervigilance. When your partner’s survival depends on you noticing everything, your brain learns to scan for danger automatically. Checking becomes a reflex rather than a decision, and a reflex doesn’t switch off because the lights are low. “That hypervigilance sets in and becomes habitual,” she says, “and it’s really challenging to turn that off in a moment.” It wasn’t a lack of trust or desire. It was a protective habit doing exactly what it had been trained to do. And for Brandon, the stakes were high: “The bedroom is the only place where I’m not disabled.” Intimacy after stroke runs on two different clocks Another pattern caught them both out. Whenever Brandon got Lindsey alone at night, she fell asleep. In his head, the story was brutal: she hates me, I’m disgusting now. The truth was simpler. She was exhausted from running a household of ten. He hadn’t done much all day, and was ready to go. Same bed, two different wavelengths, and neither knew what the other was thinking until they talked about it. Stroke affects the whole family [link: https://recoveryafterstroke.com/stroke-impact-on-family-kathy-cunningham-408/], and fatigue doesn’t land evenly. Brandon calls these conversations deposits in a “trust bank”. Every time he shared something vulnerable and Lindsey responded without making it weird, he trusted her more the next time. The partner’s grief is real too About three and a half to four years in, Lindsey said something she’d been holding down for a long time: “I’m really pissed at you for giving us this life.” She made it clear that didn’t mean she wanted to leave. She was frustrated and angry at the situation. Brandon didn’t argue. He made space for it. Lindsey calls it one of the most beautiful moments of their relationship, because in that moment he was her partner again, not her patient. Brandon now sees it this way: while he was burying his old self in the backyard, he had to let Lindsey bury hers too, along with the plans she’d had for her own life. Their children told him they were angry as well. Caregivers carry their own version of the journey, as you’ll hear in Donna O’Donnell Figurski’s story [link: https://recoveryafterstroke.com/stroke-caregiver-journey-donna-odonnell-figurski/]. When the words aren’t there In the early days, aphasia meant Brandon could manage only a word or two. Longer conversations had to wait, but they didn’t stop. Lindsey learned to put words to what she thought he was trying to say, so he could confirm or correct her without speaking. Her advice for couples navigating aphasia after stroke [link: https://recoveryafterstroke.com/stroke-and-aphasia-recovery/]: “You have to learn to hit the pause button and not the period button.” What the Taylors would tell another couple Compare yourself only with yesterday. Brandon resented a fellow patient who walked out of rehab in three weeks, until he heard her story. Now his goal is to be “better than yesterday me”. Stay curious about each other. “Purple was her favourite colour forever, but it may not be forever,” Brandon says. People change, and stroke speeds that up. Name the hard thing early. The conversations they avoided cost them more than the ones they had. They’ve turned those conversations into a book, The Waterline, a 58-week discussion guide for couples rebuilding after an acquired disability. You’ll find it at beyondthis.org [link: https://beyondthis.org]. In more than 420 episodes of Recovery After Stroke, it’s been rare to have both partners in the room telling the story together. What I hear from survivors again and again is that the stroke happens to one person, and the recovery happens to everyone who loves them. If you’re looking for a path through your own recovery, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened [link: https://recoveryafterstroke.com/book], is a good place to start. And if a stroke has made your world feel smaller, my new book, Your World Doesn’t Have to Stay This Small [link: https://mybook.to/yourworld], is written for exactly that moment. 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. Brandon and Lindsey Taylor: Getting Fired From Patient and Caregiver Four years after Brandon’s stroke, Lindsey told him she was angry at him for this life. He made space for it. Here’s what changed. Highlights: 00:00 Why would a 35-year-old skip the ER? 07:44 The dream before the stroke 09:24 What survival mode costs you later 25:00 Can you switch caregiver mode off? 31:09 Who’s responsible for the wheelchair? 43:49 Is it OK to be angry at him? 58:47 Why rehab leaves the couple out 1:07:25 When silence is communication Transcript: Why would a 35-year-old skip the ER? Lindsey and Brandon Taylor (00:00) for me, the bedroom is the only place where I’m not disabled. And so like mentally, if I wanna get out of this chair and be somewhere else, the bedrooms where I can do that at. And so then we had to figure out that whole switch thing and how to help her transition into being able to be the partner that can think about what we’re doing there rather than caregiving for that time being, because I don’t wanna be reminded. that I’m disabled everywhere. Bill Gasiamis (00:31) Hello and welcome to Recovery After Stroke. Today’s episode is a first for me in a long time. Both partners in the room telling the story together. Brandon Taylor was 35 when he had multiple ischemic strokes in his sleep in ICU, around 11 infarcts across seven parts of his brain on both sides. He was a football coach, a relationship coach, and a father of seven. His wife Lindsey was eight months pregnant with their eighth child. Child and she became his caregiver overnight. Nine years later, they talk about the part of stroke recovery that rehab almost never touches. What happens to the relationship? Going from patient and caregiver back to husband and wife. Why a caregiver can’t just switch off? Intimacy, anger, aphasia, And the conversations they had to learn to have, including one Lindsey held on to for almost four years. before we start, 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 for realbuilding your life after trauma, even when you’re not ready. Search for it on Amazon or tap the link in the show notes. A quick word about how this show keeps going. Recovery after stroke is independent. There is no big organization behind it. Every episode is recorded, edited, hosted and published because listeners choose to support it. That’s why I ask. Your support on Patreon covers the real cost of making the show, the editing, the hosting, the production, so it can stay free for the next stroke survivor who needs it at two in the morning. If this show has helped you, imagine what it could do for someone just starting out. And become a sponsor at patreon.com

Is a Stroke a Punishment From God? Separating Guilt From Responsibility After Stroke If you’ve quietly wondered whether your stroke was some kind of payback, God’s way of settling a score for something you did, or a lesson you were somehow meant to learn, you’re not alone. It’s one of the most common things stroke survivors say to Bill Gasiamis, host of Recovery After Stroke, and it’s rarely said out loud to a doctor or even a partner. It just sits there quietly, shaping how someone feels about their own recovery. Here’s the question that belief can’t survive: if strokes were God’s punishment, why do people who have genuinely done terrible things, who have hurt others, broken every rule in the book so often live into their 90s without one? And why do infants, toddlers, and people who have lived scrupulously careful lives sometimes have strokes at all? The arithmetic of “stroke as punishment” falls apart against the very people it would need to hold up against. Where This Belief Usually Comes From This kind of guilt rarely starts with the survivor. It’s typically inherited, handed down by an elder, a parent, or someone in a faith community who used the fear of punishment as a motivational tool, often with good intentions: it kept people showing up, behaving, staying in line. It’s a blunt instrument, but an old and common one, and it isn’t unique to any one religion. There’s a well-documented pattern in psychology sometimes called the “just-world belief”: the deep, often unconscious assumption that the world is fundamentally fair, and that bad things only happen to people who did something to deserve them. In the abstract, it’s strangely comforting, because it implies control: if bad outcomes are earned, good behaviour can prevent them. Researchers who study religion and serious illness have also long noted that a medical event without an immediately satisfying explanation tends to get a moral one instead; the mind reaches for a story, and “I’m being punished” is often the fastest one available. When that story gets turned inward after your own stroke, the same belief that once felt comforting in the abstract becomes corrosive in practice. What the Evidence Actually Shows Strokes have physical causes: a blocked or burst blood vessel in the brain, and risk factors that raise or lower the odds: blood pressure, smoking, alcohol use, diet, inactivity, genetics, congenital vascular differences, and plain chance. Bill’s own stroke happened at 37, when a blood vessel he was born with not something he did, something he was born with burst. He was also smoking and drinking heavily at the time, and he’s never pretended those habits played no part in his risk. That combination is exactly why this topic matters: it isn’t that lifestyle never plays a role it often does. But the distinction that actually matters for recovery isn’t “blame vs. no blame.” It’s guilt vs. responsibility. Guilt says: I am a bad person and this happened because I deserved it. Responsibility says: some of what led here was outside my control, some of it wasn’t, and I can only change the second part going forward. One of those framings keeps a person re-litigating the past indefinitely. The other frees up the energy recovery actually requires. What It Means for Stroke Survivors Holding onto punishment-framing doesn’t just feel bad; it has a real cost during recovery. Shame and self-blame tend to pull energy away from the work of rehab: a person who believes they’re being punished is, in effect, fighting the recovery itself as much as the deficits it left behind. Letting go of guilt is not the same as letting go of responsibility. You can still quit smoking, cut back on alcohol, move more, and take your risk factors seriously all without carrying the belief that the stroke itself was a moral verdict on who you are. A few questions worth asking honestly if this belief has been sitting with you: What would you say to a friend who told you their stroke was punishment for something you knew they didn’t deserve? Whose voice is this belief actually in yours, or someone else’s from years ago? And separately: is there anything in your control, going forward, that’s worth changing not to earn forgiveness, but because it’s good for your brain and body either way? A stroke is a medical event, not a verdict. The physical causes and risk factors are real and worth taking seriously, but guilt over the past and responsibility for the future are two different things, and only one of them is useful in recovery. Letting the guilt go isn’t letting yourself off the hook. It’s what makes room for the work that actually helps. Internal links: https://recoveryafterstroke.com/book · 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 Is My Stroke a Punishment From God? appeared first on Recovery After Stroke.

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, and that’s you need to make a Big Mac. Well, to make a neuron work, you need certain things. You don’t need a pickle and a bun, okay, but you need things like essential fatty acids, an

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.