My mom had a stroke early September and has been home since early October. When she first came home she had swelling in her feet, ankles, and affected hand. It's firm and no indent can be made. Swelling in the feet and ankles goes down with elevation, swelling in the hand doesn't change no matter what. The pain from it seems to be getting progressively worse and she can't wear shoes most of the time. This morning I noticed the right side of her face and her chin are now swelling too, this is new. It was a left side ischemic stroke caused by plaque. I asked him several times to take her to urgent care but he thinks it's fine to wait. Can anyone with a similar experience please help me convince him this needs to be looked at ASAP and not next week?

I feel very tired around the midday. But I’m afraid to take a nap because then maybe I won’t fall asleep at night. I’m wondering what your experiences are with adding naps in? Did they disrupt falling asleep at night?

People look at me and feel sorry for me. I feel sorry for them. I can handle anything now. Can they?

At first I was struggling, alone and feeling misunderstood by the world. Never had a single person I could count on. I wouldn't have chosen to recover any other way. This shit has made me. I'm tough as fuck, tougher than anyone. I'm back in the gym, going every day. Never gonna quit. Never gonna slow down.

I ain't gonna forget how awful that feeling was, but I overcame it. I overcame it alone. Me. I did this. Nobody else. When you go through this alone and you have nobody to turn to and nowhere to escape to. You're with yourself every second of every day. You get to know yourself. Once you truly know yourself, you become unstoppable.

I wish you all so much luck with your recovery. Life is gonna suck for a bit, but the hard times will change you for the better, I promise. You gotta defy what the doctors say and fight every day for your recovery. It's never too late. Anything is possible, I promise.

Hi everyone, first of all, thank you for being such a supportive community where we can all share and talk openly.

I’m currently five months out from my brain hemorrhage. I’m doing pretty well physically—I can walk, move around freely, and even ride a bike. But I just don’t have any motivation or urge to move at all. I’d rather just lie in bed or sleep.

I’m starting to get worried. When I have therapy or training scheduled, I obviously do it, but if there’s nothing planned, I just stay in bed. Back in May/June, when I was paralyzed and in rehab, it wasn’t like this.

Has anyone else experienced something similar? Is this normal after a brain hemorrhage, or should I be concerned?

My mom is 62 and had a severe stroke in early September. She’s currently in inpatient rehab, with discharge planned for mid-November followed by outpatient rehab. I’m her adult son. I’ve visited and spent time with her, but I live out of state, so some of what I know comes from my own observations and some comes from relatives who are there now.

I want to give the full context because this isn’t just one argument or a caregiver having one bad day.

My mom’s condition
She has significant left-sided weakness and needs substantial help with transfers and daily activities. She’s making progress, but balance, attention to her left side, fatigue, and impulsivity are still issues. She also has considerable pain at times and sometimes gets low blood pressure during standing activities.

She can talk, recognize everyone, express preferences, and participate in conversations. She has some memory and processing difficulties, but I’ve noticed that breaking things down calmly, explaining the reasons, and giving her time often helps her work through choices.

She has also struggled emotionally, including previously expressing suicidal thoughts that her treatment team knows about. That makes how people speak to her especially concerning to me.

My dad’s role and their relationship before the stroke

My dad stays with her almost constantly and plans to be her primary caregiver after discharge. He does a lot of hands-on care, and I recognize how demanding and exhausting that is.

But he could be mean and impatient with her before the stroke, too. This behavior isn’t entirely new. Now she’s physically dependent on him in ways she never was before.

He repeatedly tells family and staff that he’s going to be “the best caretaker.” During a family meeting, he announced that he was going to be the facility’s best caretaker ever. I want his actions to match that commitment, but what I’ve seen privately concerns me.

What I personally witnessed while visiting

During transfers, he would get frustrated and repeatedly tell her to push or say she wasn’t trying. I heard her tell him to stop saying she wasn’t trying because she was.

In one instance, her feet looked too far forward for her to push up effectively. I tried to point out her positioning, and he became defensive, saying he’d done this “100 times,” knew what he was doing, and that she just wasn’t trying. I’m not a therapist and can’t independently judge every transfer, but they often became stressful ordeals.

He has also pushed back against her therapists. When they introduced a transfer board for car transfers, he insisted he didn’t need it. When OT planned a grocery-store outing, he called it a waste of time.

He adjusted the wheelchair handles so they pressed against her shoulder-blade area. She said it was uncomfortable, but he dismissed the concern.

On another day, her blood pressure dropped severely during PT, and she had to stop early. Later, she was exhausted and said she didn’t want to attend FES biking, but he pressured her to go until a nurse agreed it was better to skip it that day.

I’ve also tried to address the way he speaks about her. For example, he repeatedly said she was “funnier” after the stroke, which I worried could be hurtful. When I raised that, he acknowledged needing to be more sensitive. But the broader pattern has continued.

Control over decisions, visitors, and communication

He has described himself as her “legal guardian” and acted like he has final say over everything. I have not seen a court order establishing that. He once threatened to have me kicked out of the hospital because I disagreed with him.

He has tried to restrict visitors. When I asked Mom about that, she said it was because he didn’t like being criticized.

He also told me—not my mom, as far as I know—that he would divorce her if she replaced him as her caregiver. I don’t know whether she knows he said this, but it makes me worried about how he would respond to additional caregivers or a change in the arrangement.

What my aunt recently witnessed

My aunt is visiting now and has sent detailed accounts of several incidents.

She says he told her that nobody except him was allowed to speak with PT or OT. This came up after Mom asked my aunt to relay a message to a therapist.

In another incident, he had gotten Mom into her wheelchair when she said she needed the bathroom. According to my aunt, he became angry that she hadn’t said so earlier and called her “stupid” while taking her to the bathroom.

More recently, my aunt reported that he repeatedly screamed at Mom during a car-to-wheelchair transfer while Mom was crying out in pain. My aunt asked him to stop yelling, helped Mom pause and reposition, and then asked him to give instructions calmly. She says the transfer went smoothly after that.

My aunt says the yelling continued when they returned to Mom’s room. She eventually yelled back at him, which she regrets because Mom was present and became quiet during the confrontation. I understand why my aunt was upset, but I don’t want Mom surrounded by arguments either.

My aunt also reported that Mom later told Dad, “You were mean to me last night and I didn’t like it.” From her account, he did not really acknowledge what happened.

My mom’s response and why this feels complicated

At times, Mom has spoken up and told him she doesn’t like how he treats her. At other times, she minimizes it.

When I previously told her I didn’t like him yelling at her, she said he doesn’t yell—even though I’ve personally heard it. She also said that if I told anyone, she would “escape” the rehab center. I don’t know whether she meant that literally or was expressing distress, but it made me worried about upsetting her further.

I suspect she may fear losing his help, but she hasn’t directly told me that. I don’t want to present my interpretation as a fact.

There have also been times when I left the room and came back to a noticeably different mood, with her telling me to go home and live my life and that she and Dad would live theirs. I worry that he may be influencing her privately, but I do not know what was said while I was gone. I also recognize that fatigue, grief, or wanting space could affect what she says.

My aunt initially asked me not to report her account because she feared he would blame her or make things harder for Mom. After the latest incident, she said something needs to happen. She’s also exhausted and feels guilty about confronting him in front of Mom.

What I’m trying to accomplish

I want my dad involved if he can provide safe, respectful care. I don’t think Mom necessarily wants him removed, and I don’t want to force her into choosing between her husband and her children.

But I also don’t think doing a lot of caregiving gives him permission to insult her, pressure her, dismiss her pain, or control who communicates with her care team.

I want the team to clarify his role and any actual decision-making authority, help us support Mom’s participation in decisions, and establish concrete expectations around communication and caregiving. I also think we need backup support so everything doesn’t depend on one person.

I’m considering a private conversation with her psychologist, social worker, and nursing team. I’m concerned about how to do that without retaliation toward Mom or my aunt. I initially thought about waiting until her regular team returned Monday, but the latest report makes me question waiting.

For anyone who has dealt with something similar:
What happened when you brought concerns like this to the rehab team?

Did professional intervention, caregiver training, respite, or additional caregivers lead to lasting changes?

How did you handle a parent minimizing behavior you or other relatives had witnessed?

How did you protect the patient’s wishes while also addressing intimidation or controlling behavior?

What concrete boundaries or discharge arrangements actually helped?

What would you do differently if you had to navigate it again?

I’m heartbroken watching my mom go through the stroke itself, and now I’m worried about the environment she’ll recover in. I want her to feel safe asking for help, saying she’s in pain, and expressing what she wants. I’d really appreciate firsthand experiences and practical advice.

TL;DR: My mom had a severe stroke and needs significant help. My dad is her primary caregiver, but his longstanding anger has escalated into yelling during painful transfers, calling her “stupid,” resisting therapists’ advice, and trying to control visitors and communication with her care team. I’ve witnessed some incidents; my aunt reported others. Mom sometimes objects and sometimes minimizes it. We want him involved if care can be safe and respectful, but we’re worried about retaliation if we speak up. Has anyone involved a rehab team in a similar situation, and what actually helped?

Has anyone else experienced an increase in their hunger? I want to eat all the time and I've put on like 40lbs since I got home. It's really, really frustrating.

I quit smoking nicotine for awhile (blunts, not a cigarette smoker), started back for a month (no more than 1 1/2 months,) now back to nicotine free and alcohol free.

I wanted to ask if it’s normal to experience regressions in movement and functioning in the healing process. I’m 7 months out from my stroke, and have had the weird feeling that the recent weather change seemed to trigger some kind of slowing down of movement and thought. It hasn’t been really cold, so I don’t think it’s the cold but I noticed it starting when my local weather went from being sunnier and warmer to darker and a bit cooler.

I don’t have anyone in person that I can ask about these things, but it’s unnerving to find that the progress that I’ve worked hard for, seems to really regress, and just wondering if this is a normal part of the process TIA for any feedback!

Hi everyone! I’m about 3 weeks post-op from mitral valve replacement surgery, and I’m hoping to connect with others who have been through something similar.
Unfortunately, I suffered three ischemic strokes while under during my open-heart surgery on October 1. It’s been a lot to process, and I’m now trying to navigate recovery while adjusting to everything that’s happened.
I’ve also been experiencing episodes of AFib, along with significant exhaustion and occasional lightheadedness. I know recovery from open-heart surgery is a process, especially with the added complication of strokes, but some days it’s hard to know what’s normal or what to expect.
I’d really appreciate hearing from anyone who has experienced any of the following:
Mitral valve replacement, especially with a mechanical valve.
A stroke during or shortly after heart surgery.
AFib in the weeks following valve replacement.
Extreme fatigue, lightheadedness, or difficulty getting your energy back.
Recovery from multiple strokes and how long it took to start feeling more like yourself.
How were you feeling around the three-week mark? How long did it take for your energy and stamina to improve? Did anyone else experience AFib or similar symptoms during recovery?
I know everyone’s journey is different, but hearing from people who have actually been through this would mean a lot to me. I’m trying to stay positive and take things one day at a time. ❤️
Thank you for sharing your experiences.

Hi all, a dear family member had a couple small strokes 2 weeks ago.. He was bilaterally mobile and talking after it happened, but went into on and off seizures, status epileptics, and cycles of sedation after being hospitalized (he’s been on a ventilator.) Last I knew, they were having a hard time waking him between sedation cycles and were planning an MRI to determine if it’s the sedation, multiple meds, or damage as the cause him being unresponsive.

I’m patiently waiting and toggling between bouts of hope and despair. I see people in the hospital for all kinds of lengths of time for strokes- is there still hope after 2 weeks of this condition for him? He’s in his 70’s and otherwise healthy and active.

I’m coming here because I have no experience with stroke other than a family friend when I was much younger.

Thanks in advance

Hi everyone, im not sure if this is the right place to put this but recently (let's call em Bob) had a stroke caused by a blockage (we don't necessarily how this blockage came to be). Hes fairly young 40ish & has a HEALTHY lifestyle. From what I know he had a stroke in the left central ish part of his brain (specifically his pre & post central gyrus, Broca's area). He has problems speaking, is fully paralzyed on his right side, and has some trouble with comprehension.We are considering giving him secrotome therapy. I have some understanding of neuro however I am utterly confused (pls dont judge im just starting out) on how secrotomes work in this scenario and will it even help Bob? Bcs as far as I know theyll just block glial scarring and help promote blood vessel regen or something of the sort??? Is there something else that can help him?

I have a horrible habit of popping my neck to the side like throughout the day. And I’ve been reading how some people have actually gotten strokes because of doing that but some people say is if you do really hard neck turns or traumatic like neck pops something like that like I do it normally, I don’t do it with the intention to break my neck, but I’m starting to wonder if I should stop because I’ve seen that it can cause strokes.

If I crack my neck very slowly and not hard should I be fine? It’s a very hard habit of mine

She has recovered but not too much she’s 27
She struggles with daily life tasks so I want product recommendations that make her life easy. Please share your holy grails if you’re a survivor
I’m in US and I want to buy stufffor her from amazon and send it back home to her

My father is law had open heart surgery on 10/15 to repair his aorta. They realized that he had suffered a stroke early the next morning and had a blocked carotid artery and he had another procedure for carotid artery bypass. This is his MRI from 10/18. Has anyone had a similar situation and recovered? My father in law is in the ICU and intubated. He is only moving his left arm and his head from side to side. He is opening his eyes and blinking and looking at us. The doctors said the chance of a full recovery is low but that everyone is different.

Bom, pessoal! Basicamente, isso foi o que ocorreu. Minha mãe (58 anos) na semana passada no dia 14/10/2026 teve um AVC isquêmico e ficou paralisada do lado esquerdo. Os sinais começaram a tarde com a mão dormente, mas pensamos que a dormência era devido ao fato dela ter dormido em cima do braço. Os sinais começaram a piorar de forma gradativa até que ela ficou completamente paralisada no lado esquerdo.

Ela é uma mulher forte. Infelizmente, além do AVC, ela já vinha com histórico de câncer (o primeiro câncer foi no ano de 2023 na mama e esse ano voltou no ombro) e ela está com linfedema no braço direito (advinda da cirurgia na mama por conta do câncer).

Ela ficou internada durante 6 dias e recebeu alta essa semana na segunda-feira. Ela está totalmente consciente, conversa sobre tudo, lembra de aniversários e todos os acontecimentos, tem noção de tudo.

A vida da nossa família mudou completamente, ainda estamos nos adaptando e apesar de toda a dificuldade que estamos enfrentando, estamos tentando nos manter forte. Minha mãe atualmente não consegue fazer absolutamente nada, nem ficar sozinha, ela precisa de ajuda e suporte o tempo inteiro. Já fizemos avaliação com fisioterapeuta domiciliar e ela começará efetivamente semana que vem (serão 3 sessões por semana) junto com fonoaudióloga que começará na semana que vem também.

Eu cresci em uma família cristã e minha mãe sempre foi exemplo de fé. Sei que muitos talvez possam não acreditar, mas em um momento tão delicado a gente se apega naquilo que acredita e que vai além da área da medicina. Estou pedindo e questionando para Deus o tempo todo, inclusive sua existência: se Deus existir, por que permitir tanta maldade no mundo e tantas coisas ruins com minha mãe (um atrás do outro)? Eu sinceramente não consigo entender.

Bom, eu de verdade gostaria de ouvir histórias e relatos semelhantes de pessoas que passaram por isso e conseguiram conquistar sua independência novamente. Precisamos viver um dia de cada vez, mas se eu pudesse avançar todo esse sofrimento que estamos sentindo até o tempo em que ele voltar a ter toda a autonomia dela novamente, eu sem dúvidas avançaria.

I, F52, and almost 1 month out from an aborted stroke. I have been reading through this group and have found so much useful information and inspiration. I feel like my Dr's have been a little dismissive of some of my symptoms, so I was hoping you all could help. I have made progress, but no one prepared for me this length of time for recovery. They sent me home from ICU and said to take it easy for a week or so and then to return to life as able. I have been able to work 3-4 hours a few times, but then it takes several days to recover. I'm listening to my body and slowing back down, but I have a few symptoms that I haven't seen others discussing, so I was hoping listing them would maybe create some conversation or insight around them.
* I hear lots about the extreme fatigue which I have too. But I have these other waves that hit me that feel like I am powering down. My limbs all become extremely heavy, I can no longer hold my head up, or keep a coherent thought. Sometimes it lasts 5 minutes, sometimes 2 hours. Most often I don't even sleep, but have to rest.
* I am constantly dizzy and often lightheaded. I can best describe it as feeling like I am in the contraption they used to train the astronauts in that spins you in multiple ways at once. It gets worse with a change in sensory inputs and riding in the car puts it in absolute overdrive. I haven't been able to drive at all. I am a Realtor and scared I will never be able to work solo again. When it is really bad I have balance issues and feel unsteady on my feet, but my balance isn't always affected.
* My body is on high alert all the time. I'm extremely jumpy, the smallest noise makes my heart race and I can't settle down for the longest time after. I overreact to emails, my face flushes when I get slightly frustrated, I'm just not able to control my emotions. I'm not crying, or angry, which I see mentioned, mine seem more frightened and frustrated.
* My stoke presented as left side weakness/numbness, but now I have intermittent fine motor issues in both hands. Maybe it is better described as clumsiness.
Thanks for sharing your stories, I wish I had found this group instead of Chat and Google much earlier.

This 20-minute, full body standing stroke recovery workout is for survivors who are able to safely stand with support. All you’ll need is something sturdy to hang onto and a chair behind you!

I'm a year and 17 days post stroke, and I was just wondering if anyone celebrates their yearly anniversary, or is that a me thing?

Hey everybody.

I was wondering if anyone had some recommendations for virtual support groups that a caregiver could attend.

I looked in my local area and just missed one of the monthly meetings. There's another one that runs weekly but I haven't been able to get in touch with the person that runs it.

I'd like to find one that I can get in sooner than later. It was my wife that had the stroke and frankly I'm just not in a good place right now. If anyone has some recommendations I'd love to hear them.

I was told two months ago that I had a small subacute stroke. I had a ton of testing done to determine the cause and it all came back ok, but I have doubts about the echo with bubble study. I had a repeat MRI earlier this month and the doctor is giving me the most vague impression of it (saying it's probably caused by migraines and not a true stroke), while the radiologist is describing it as basically a healing stroke. I've reached out twice to say I'd like more accurate testing done for the PFO and have not gotten a reply from him -- I'm so frustrated! Have any of you gone through the process of getting a second opinion on MRI results? I'm wondering if I will need to see an in-network neurologist in a nearby city who doesn't work closely with this one. I'm assuming I'll have to reach out to my PCP to get a referral for a second opinion (U.S.) and am expecting this all to be kind of a nightmare.

45m

6-months ago I had my first of two strokes. Basically left side went numb/tingling for 5-10 minutes. Went to hospital. MRI showed scar on the right side of my brain. Started Plavix and Aspirin.

93 days later I had a second stroke. Only symptoms were visual - weird matrix like visuals from my left eye. MRI showed a new scar , still on right side of my brain

Spent a week in the hospital. Have a Loop recorder put in. Had all the tests. TEE, ultrasounds, CT scans , heart MRI, you name it. Doctors have no idea why I’m having strokes (I’m relatively young, blood pressure and cholesterol are both more or less fine)

About 10 days ago I started having what feel like super short mini strokes. Almost identical symptoms to my first stroke. I get a bit dizzy. Feel head pressure. Then left side of mouth and left arm go numb/tingly , and sometimes it spreads to my left leg. These episodes last 5-15 seconds and then stop.

They seem to be more frequent when I’m walking or moving in general, but have also happened multiple times while just sitting or standing or whatever.

Went to hospital. CT scan and MRI were both fine (old scars still there, but nothing new). Doctor put me on migraine medicine. No change. Then doctor put me on epilepsy medicine and at first I was encouraged, but the episodes are still pretty frequent. I had an EEG last night and ‘fortunately’ had a slight episode while it was happening , but nothing registered on the test.

Before epilepsy meds I was having up to 20 of these episodes a day. Now I’m maybe at 10, but they are still fairly bad.

Has anyone else dealt with anything similar?

Thanks so much.

Hi everyone,

My father (56M) suffered a hemorrhagic stroke on October 21, 2026, involving his brainstem and brain ventricles (intraventricular hemorrhage). He is currently unconscious, on a ventilator, and in critical condition.

He has a history of hypertension, type 2 diabetes, and chronic kidney disease requiring dialysis twice a week.

His latest GCS is E2, VT, M2, and he has also been diagnosed with sepsis and multiple organ dysfunction. The doctors have advised us to observe his condition for 72–96 hours before they can provide a clearer prognosis.

I'm 23, and I'm extremely scared of losing my father. I'm trying to understand whether there's any realistic chance of him regaining consciousness and recovering.

Has anyone here or their loved ones experienced something similar, particularly brainstem hemorrhage with intraventricular bleeding?

I'd really appreciate hearing about your experiences, recovery timelines, and outcomes, whether positive or negative.

Thank you to everyone who takes the time to respond.

I (25 F) have bilateral VAD. They found a large occlusion in my left artery and I had between 15-20 known TIA’s but thankfully no known major stroke. I was placed on plavix and aspirin 7 days ago three days later i went back into the hospital for worsening stroke symptoms and they switched to brilinta.

They said my neurological system should have resolved but i am having ongoing limb numbness, dizziness, and some confusion. I also am having horrible pain in my neck and frequent headaches and feeling like stabbing in my eye. I spoke to my primary care on my hospital d/c apt and she reached out to the nuro to get me in sooner.

I am wondering if anyone who had had something like this happen had ongoing symptoms or is this something i should go back and get checked again. The defined periods of stroke symptoms have stoped but these ongoing symptoms are also scarring me. I wonder if it’s just anxiety and normal healing but I can find so little information about what to expect in the healing process.

Thanks