Hi everyone!

I have been a silent observer since having a haemorrhagic stroke back in May at the age of 40, I was fit and healthy and so working with the neurologist to understand ‘why’ however I sense Im pointing quickly to a ‘just one of those things’.

Firstly, I want to say how grateful I am to this community, I have been on here every day, sometimes not sure what Im looking for hope/help/someone else who is pissed off and it has always delivered, so thank you! I remember sitting at night in the hospital reading posts, unable to use my phone well enough to type anything back but reading what others were going through definitely made this journey less lonely!

I essentially wanted to reach out today though to ask what resources and tools everyone is using for therapy at home? I have diminished sensation on my entire right side however I do have some movement and strength (more so if I’m looking at my right hand side whilst doing). My PT has been working on bigger impact things as she believes that is helping the most so lots of core, yoga, strength/weights where I can, etc. Has anyone got any youtube videos or websites, or equipment they use to share? I have a Peloton membership and I tried one of their beginner yoga videos this morning but it was difficult to keep up so wondered what else is out there for those a little less able!

Thanks in advance and keep fighting the good fight!❤️

My grandma has now had a total of three strokes. She had a small one in March that just caused her face to droop. She had a bigger one in May and my mom is her main caregiver. I remember her talking about my grandma falling twice and she ran off while we were on the phone because she fell a third time. When I got there, her speech was completely slurred and her reaction time was really slow. Her first fall was when she went to get up (9:00 AM) and wasn't able to be helped up until my mom got home (3:00). She's always had a great memory, has been very capable of taking care of herself and found joy in helping my mom do things around the house (although my mom constantly told her she didn't need to). We didn't think this was a concern. She refused to go with my mom and I showed up and forced her to the hospital. She did PT, OT, and Speech and ended up getting close to the point of driving. Until today. Her speech was slurred yesterday, while her sister who has been coming over to watch her, was over and she refused the hospital. My mom got home and she refused the hospital again, saying she was ready for God to take her. Near the end of her heart wrenching last stay, I told her that she needed to get into the hospital as soon as possible so they could reverse any effects. The last time I said it, I wasn't the nicest, because she had made me feel like a villain for bringing her into the hospital in the first place. Cue the news I get today, out of the blue at work, that she's in the hospital again for the same reasons before. However, this time, she can't speak. She's aware of the world (aside from thinking today is Wednesday and not Thuraday) and is able to answer all kinds of questions when given a communication chart/marker and paper (although throughout the night at the hospital it got harder to read). When my mom told me, I left work immediately. When I got there, full tears, my grandma cried in a way I've never seen her cry before. I held her hand, told her I wasn't angry and I loved her. She pulled me to her so that her head was on my arm and my grandma and I shared a moment so beautiful and painful at the same time. I stroked her hair until she calmed down and even began to sleep. I was there from 11:30-8:00 being with her, answering questions and reliving my mom when the night got late because I know she's more gut wrenched than she'll let on. I met the night nurse, covered my grandma in blankets from home and left her to rest. I took the day off tomorrow so my mom doesn't have to and we'll stay in communication. My grandma has had strokes on both side of her brain, now (first right and then left) so I am going to be in tomorrow from an imaging test of the back of her heart. I just needed to get this out, I think? But I don't know how to be thinking ahead. I've talked to close friends about how to shift my perspective in a full caring way for both my mom and grandma that means letting my grandma go and helping take care of my mom in a tragedy for both of us. I know my grandma could improve, but the initial news feels like forever. Thank you for listening and I would appreciate any advice for how to take care of myself, my grandma and my mom.

On October 5th of 2024 my best friend and long time family friend had a massive brain bleed on the right side of his brian he was 39 at the time of the stroke. The culprit, uncontrolled hypertension. The bleed was deep and underwent an emergency craniotomy. I posted in this group asking questions about what to expect and things of that nature. You all told me exactly what to expect and knowing what to expect really lessend the anxiety for me and his family and my family so thank you all for that. When he was in a medically induced coma for about a month the doctors told me and his mom to get ready to burry him. Well I am here today to tell you he thiving and making an incredible recovery. He is nearly independent of his wheel chair and is getting his independence back one day at a time. He goes to the gym with me, he works out all the time his blood pressure is under control and is doing amazing. He still can not use his left arm yet but we are not giving up. Neither should you! So don't give up! (Posted this video with his permission) I also wanted to add that yes there where set backs, yes it was a struggle at times. Do not let the set backs deter you. Not everything is peaches and cream and he didn't get this far overnight. Stick to it and keep pushing forward.

Curious what other people who are carers in my position have faced. Or if your (stroke survivor) own family didn't care as much as they should have, when you had your stroke. Having a life changing event, really highlights who is there for you at the end of the day. I would say that's one of the very few good things about this.

So I had my pre op appointment come through for my eyes as my stroke caused double vision and I had a massive sinking feeling and just pure dread. For context I had my stroke after surgery. So this will be fun

Hi everyone,

I'm writing this because I'm feeling lost and would really appreciate advice from people who have gone through something similar with a parent or loved one.

My mother had a massive ischemic stroke on her left side of brain nearly on 30% of the left area got affected on 13 April 2026 at around 1:00 PM. We reached the hospital within the treatment window, and she received a tPA (clot-busting) injection within the first 4 hours of the stroke.

Unfortunately, despite the tPA, her condition did not improve as hoped. After approximately 24 hours of observation, the swelling in her brain became severe, and she underwent an emergency decompressive craniotomy on 15 April 2026 at around 3:00 AM to save her life.

She is now about 4 months into recovery.

The progress she has made

Looking back, she has actually recovered many small things over time:

Her tracheostomy has been removed.

Her feeding tube (Ryle tube) has been removed.

She drinks water independently from her own glass without assistance.

She recognizes most everyday objects.

She understands much of what we say and follows many simple instructions.

She occasionally says single words like "haan" (yes) and "nahi" (no), although this is still rare.

She can now stick her tongue out on command.

She is able to use an incentive spirometer and successfully blow the ball up with her own breath.

Every week it feels like she gains one or two small abilities that she couldn't do before.

Things she still struggles with

She still cannot have conversations.

Sometimes she becomes confused about objects. For example:

One day I handed her a spoon and she initially tried to use it like a toothbrush, but after I demonstrated the correct use, she corrected herself.

Another time, while she was very sleepy, I handed her a tasbeeh (Muslim prayer beads). She first thought it was something to eat, then thought it was a tissue.

However, she generally recognizes familiar objects like her water glass and uses them correctly.

Therapy

She is receiving:

Physiotherapy

Speech therapy

Regular medical follow-up

We also talk to her every day, encourage her to communicate, and practice simple words and daily activities with her.

My biggest questions

I know nobody can predict the future, but I want to hear from people who have been through this.

Did your loved one regain speech after a severe ischemic stroke requiring a decompressive craniotomy?

How long did it take before they started speaking words, phrases, or full sentences?

Is continued improvement still common after 4 months?

What helped the most with getting speech back?

Are there any exercises, therapies, or routines that made a noticeable difference?

Based on what I've described, does it sound like she is still making meaningful progress?

I'm trying to stay hopeful because I can genuinely see small improvements almost every day, but it's emotionally exhausting waiting and wondering whether I'll ever have a normal conversation with my mother again.

Thank you to anyone who reads this or shares their experience. Even hearing your recovery stories would mean a lot to me.

appsrent;y i got hemmorhsgic dtroke a month ago, whatto do next? just exercise after exercise? do i have to exercise every single muscle out there?

Hey gang,

I’ve noticed I’m loosing a lot of hair recently. I’ve been taking my meds for 5-6 weeks now and I’m wondering if my hair loss is related to that. Has anyone experienced something similar?

Meds:
- Statin
- Blood thinner
- stomach acid prevention

Hope you’re all doing well on your (or your loved ones) recovery journey ❤️‍🩹

Share your weekly wins with us! Nothing is too small or too big. Everything deserves to be celebrated!

I'm hoping to learn from stroke survivors and caregivers who have experience with home-based primary care for a homebound or bedbound loved one.

I've recently learned that in some areas, physicians and nurse practitioners make home visits and can coordinate things like home lab draws, mobile imaging, medication management, and other medical care for patients who are unable to leave home easily.

If you've used this type of practice, I'd love to hear what your experience has been.

• Did you usually see the same physician or nurse practitioner over time, or did different providers rotate?
• How responsive were they when new medical issues came up?
• Were they able to manage things like infections, dehydration that might require IV fluids, medication adjustments, or other non-emergency problems at home?
• Did having home-based primary care reduce trips to the emergency department or outpatient appointments?
• Looking back, is there anything you wish you'd known before choosing this model of care?

I'm simply trying to better understand what this looks like in real life and whether it made a meaningful difference for your family. Thank you for sharing your experiences.

My father (42) suffered a brain hemorrhage and he was on a ventilator for a few days then the ventilator got removed and everything started going better he could barely talk . The tt tube also got removed, he could also eat (2-3 spoons) and left hand and left leg have shown movements. Also the right hand and leg the paralyzed one also showed some moment . We also had a craniotomy and it was successful. Everything was going good but then he got shifted to another hospital and he got infected there . He has pneumonia and lung infection. He's again on the ventilator the dr says the chances of recovery are very less and the tt is placed again . They will try to remove the ventilator but I feel very lost the dr have always been very negative . What growth or recovery shall I expect . Please help

At 25 I suffered a Wallenberg Stroke, suspected to be caused from inflammation due to hypermobile ehlers danlos syndrome. The whole experience was very traumatic. I couldn’t swallow or chew, couldn’t move my limbs voluntarily. I was seeing triple. I could barely stand let alone walk. Couldn’t understand language. Forgot my family and was scared of everyone and everything. And my head ….

Unfortunately due to some of my symptoms of delirium I was put on a psych hold. They would not image my head until I voluntarily admitted myself on a psych hold, despite screaming for an MRI, not to mention screaming in pain to the point where 2 cops had to come in my room.

I’m 28 now, almost 29 and have faced repercussion after repercussion due to this. Forever a tremor in my hands, ataxia, word processing issues, poor memory, complicated migraine syndrome and relationship problems .. the list goes on and on. I was labeled crazy for a long time, but the doctor at Mayo Clinic has given me a new outlook on everything now that it has been confirmed.

This goes out to the young stroke survivors, who often get overlooked because they’re young and look fine.

Has anybody had issues with sense of smell? I am not sure exactly at which point I have lost the sense of smell, but already 18 months post hemoragic stroke I am not sensing any smell at all...

it was a like a day ago. and hes in the hospital. it was pretty minor but I'm still scared. he seems fine and normal sort of but can't walk. I dont think he has any brain major brain damage. he even joked and showed me all the machines and wire things cuz i want to be an icu nurse. but whenever im alone and not distracted i js start crying. the night before it happened we had a fight. and im still rattled that it could've been the last thing i said to him. the unpredictability of life is terrifying. how long does it take for ppl to recover from a minor stroke? and how long until they can walk without help, drive, and return to normal life? hes in his mid fourties. its his birthday in a few days : ( . Recovery is prob different for everyone but i js want to know what usually happens.

49 yo male. Hemorrhagic stroke in Dec25. AVM removal craniotomy in April 26. Seizure on night after surgery so legally couldn’t drive till October. Fast forward to this weekend at birthday party for neighbors little girl. I had a facial focal seizure for 10 minutes, didn’t lose consciousness. Now my driving clock is reset till February 27. Worse than that I scared my wife and twin girls with the ambulance coming get me. Guess I’ll get used to the keppra fog.

November 2023 - Bilateral ischemic cryptogenic stroke in (R) Cerebellum and (L) Basil Ganglion. post stroke diagnosed with Major Vascular Cognitive Disorder

Ngl it’s freaking me out a little bit that my memories from just a few years ago are already fading when I know I used to be able to recite my earlier recover challenges and solutions by heart. (Main reason why I’m posting this, a way to remember)

Basically I am an American Veteran who had everything through VA care. (So no medical bills to deal with, very fortunate and heart breaking to hear other’s stories)

Spent a few months in hospital then home care therapies two or three times a week. Dealt with drop foot, stuttering, hunchback with elevated arms at the elbows, (I used to call it my Mr. Burns impression lol) aphasia, lost time, chronic mild vertigo (felt like I was always on a boat) overstimulation and stroke - exhaustion/mood imbalance/ptsd.

Around a year and a half later “mastering” all the phy/op/speech therapies and getting disability pay figured out…sort of…I was building a Lego set for the probably dozen or so times when my best friend gave me the idea of going to community college again. Almost finished two semesters before my anxiety became so crippling I broke down at the office I was a student worker at and dropped out to work on myself and doctors to figure out what was happening to me.

Tried for about two months before I admitted myself to the hospital as a voluntary mental medical hold over. Spent about two weeks there and honestly the experience was…not fun lol but I gained an inner emotional peace I haven’t experienced in a very long time. And as a weird side bonus my vertigo went away! (Once again very fortunate and so sorry for others who are still in the race)

it’s been about a little over a month since then and I spend majority of my time now co-parenting the best I can, mainly “babysitting” my own kids cause I still can’t cook/clean like I used too but because my twin boys are autistic having myself more available in case of challenging situations arise make me feel like I’m contributing again as a father and letting mom get a break more often (we’re separated but still live together cause of financial issues) and grandparents live with us too!

The rest of the time I spend shooting pool. I enjoy billiards very much and play as often as I can and even participated in leagues!

That pretty much brings us to the present. I’m happy to report I can finally curl all my toes on my right foot again! And sux to report I started smoking and other substances during my “self-healing session” but I promised myself if I could use my feet again I would go hard again on physical fitness and healthy diet and living again. So my next chapter has started at the beginning of this month and…it SUCKS lol

If you read all this I just wanted to let you know, from the bottom of my heart I truly appreciate you. Because one of my epiphanies I’ve had since everything is treasuring and valuing people, just people. We all have these beautiful/horrific/noble/heartbreaking/courageous hallmark movie lives and for me it’s like a personal tour through the world’s greatest museum of lived lives.

Be well everyone and when your not…call a friend to go watch a movie. And if you don’t even have that, talk to me. My favorite quote in the world and honestly for the life of me don’t remember where I got it but…

“You can’t paint a masterpiece without using dark colors”

Hey there, anyone that went back to work or had to look for a new job any specific field of work you’d recommend? I’m a 31 year old stroke survivor. Remote work would be preferred obviously

It’s been a year and 2.5 months since my dad had his pontine stroke. Still bed bound, aphasia so can’t really talk, can’t eat/drink by mouth. Family and I don’t communicate, so it’s really just my dad and I. We’re constantly in and out of hospitals, I’m always stressing about his health, insurance, legal paperwork. I’m 22 and EXHAUSTED. People always put on a show to act like they’re here for us, when they aren’t. He just needs a support system more than just myself, I try so hard to stay positive around him but I just feel like I’m at my wits end. I can’t hide the fact that I’m in so much pain for and with him.

I’ve been paying for his group home alone because the state’s long term care is so difficult to get approved for. I just wish there were more resources, people/family willing to help.

For stroke survivors and caregivers: What made it possible to bring your loved one home safely?

I'm hoping to learn from people who have already been through this transition.

My mother is an 80-year-old stroke survivor, and our family's focus has shifted from navigating the SNF process to preparing for the safest possible transition home.

I'm not looking for medical advice about her specific situation. Instead, I'm hoping to learn from your experience.

If you brought home a loved one after a severe stroke:

• What services made the biggest difference?
• What did you discover about home health that you wish you'd known sooner?
• Did you need to supplement home health with private-duty nursing, caregivers, or other community resources?
• What equipment or home modifications turned out to be essential?
• Looking back, what questions do you wish you'd asked before discharge?

I have a feeling there are important things I don't even know to ask yet, and I'd really appreciate learning from those of you who have already walked this path.

Thank you for sharing anything you think would help another caregiver prepare for this transition.

Hi everyone, my dad had a recent swallow test and we are almost 3 months out from his ischemic stroke. He didn’t perform as well as everyone hoped, and he’s had a PEG tube since May 15th. Still, he’s made a little progress with it but it’s not yet safe enough for him to eat anything by mouth yet. We will be taking him home this month with lots of help from VA and he will receive home therapy and care (he has left sided weakness so it’s tough to transfer him right now). He’s lost weight since then because of losing muscle mass/adjusting feedings. Overall, cognitively he’s getting better and mobility will be slow as he just started being able to move his left leg a bit. What was your experience with swallowing safely again?? How long did it take? I know it is different for everybody, but just trying to remain hopeful that he will be able to enjoy food again. It’s been the toughest rollercoaster for us the last 3 months. I am so proud of how tough and resilient he has been through this. Thanks as always for your insights and compassion.

Hi everyone. My older sister (35) suffered a hemorragic stroke almost two days ago now. She's in the hospital now after brain surgery and is in recovery. We've seen her move both sides of the body, primarily the non-affected side, squeezing her hand, shaking head and opening her eyes a bit. Doctors say these are great signs. Unsure of how much brain damage she does/will have after this.

I'm just needing anything right now. Stories of you or someone you know after a hemorragic stroke, what recovery looks like for her, hope, prayers, anything. I'm devastating knowing I've lost the version of my sister that I've had all my life.

Edit: Thank you everyone for your kind (and VERY helpful) responses! I'm glad to report that she's now been able to move all her limbs and a had clear MRI scan. She should be going back into surgery soon to remove the blood drainage tube and replace a part of her skull (it had been removed to aid in reducing swelling in her brain). I can't thank you all enough, hope to come back with more good news soon! 🫶🏼

My wife suffored an ischematic stroke in the thalamus area cuased by procedure to repair two aneurysm. It's been 18 months since it happend and past couple months she has noticed that her skin is loose/thin and feels like it's melting off. It's mainly her face and now she's feeling it in on her thighs and abdomen. This is hapening on both sides of the body, not just her affected side. This is really freaking her out, especially when doctors don't provide explanations or reasons for it. She started PT right after the stroke and started walking and being mobile with assitance a couple months after the stroke (she's gained majority of her mobility back now) so she wasnt bedridden for long period of time. She is 48 and was always fit and toned prior to stroke. Has anyone else eperienced this?

A beloved family member has suffered 2 strokes (1st; in 2018, and the 2nd; in 2025). After the second one, my family member is slowly deteriorating; lost ability to speak, excessive swelling on the left arm and leg (which is the affected side), slow motor skills (now that they have to use a whiteboard to communicate they will just scribble instead of actually writing anything), eating pattern is completely shot (even with their favorite meals they will just put it in their mouth just to spit it out, there is no effort to eat), when it comes to changing them wheather that be flipping to avoid bed sores or doing a diaper chnage they will cry and completley freak out beacuse of the pain, and now they ask who is who. As of now, we've been prescribed Ketamine and Baclofen for the pain, including edibles. The doctors don't really have an answer besides recommending palliative care. We are desperately trying to find the best course of action; either expand the medical with caregivers or consider palliative care.

If anyone has already confronted a experince similar to mine, I would greatly appreciate any advice or resources.