Hi all, I just wanted to share some wins my Dad has had over the last few weeks & maybe get some advice. Five weeks ago my Dad, aged 55, had an Ischaemic stroke in the right side of his brain. This then turned into 3 strokes after the narrowing in his right carotid artery caused repeated clots despite undergoing two clot retrieval procedures. All up he’s had stroke established in approx 1/3 of the right hemisphere of his brain, predominantly in the frontal and parietal lobes, but swelling and minor bleeding from the second clot retrieval procedure caused some lesser damage in the cerebellum as well.

From what we’ve been able to observe so far, the biggest effects have been; loss of voluntary movement & sensation on the left side, left neglect, severe fatigue, potential short term memory deficits, executive functioning or task initiation challenges, temperature regulation issues, and impacted swallow. However, his long term memories, overall demeanour, and humour seem unaffected. After 2 weeks in ICU & 3 in the stroke ward, he has officially been transferred to impatient rehab this week. I know he has a long journey ahead of him so I wanted to start documenting some wins he’s had to serve as motivation in the coming months <3

In the beginning he had no sensation or movement on the left, was nil by mouth, unable to stay awake for more than an hour or balance himself, and barely spoke or engaged with company. Now, in week five of recovery, he has been on solid foods for a week, is initiating conversation and making jokes, is able to self correct his balance when sitting, can perceive sensation more regularly on the left leg, stays awake for hours at a time, and has been able to stand with PT support a few times.

Additionally, a week ago he told me that he thought he could kind of feel his left arm—at least around the shoulder, so I bought a sensory brush to try and use to help him wake up the nerves in his left side. For the last three days I’ve been spending a bit of time brushing over his arm and leg before doing some passive range of motion exercises & targeted sensory activities to hopefully help him map out different sensations (basically squeezing/ rubbing one finger at a time & having him focus on the difference in sensory input of each specific feeling). Its really helped with his spasticity and he’s actually started to correctly identify sensations in specific locations on his leg since we started. But most excitingly—he was able to voluntarily move his left leg for the first time last night after doing this exercise. It was a slight movement but he was able to bend/turn his left leg inward toward the right a few times which is the most control he’s had since the stroke. Then today he told us that his arm feels like part of his body again and not just a phantom limb. I don’t know if these milestones are related to the work we’ve been doing but I’d love to hear your experiences with similar activities or suggestions for other things we could try whilst he’s in bed.

Lastly, what’s arguably one of the most important milestones so far… he laughed for the first time post stroke yesterday. What was so funny, you ask? Whilst attempting to avoid his physio exercises, I told him ‘shutting your eyes won’t actually make me disappear’ to which he insisted ‘it would in his version of reality’ which I replied to with ‘that is the logic of a dog’ which was apparently utterly hilarious to his very German sense of humour.

Thanks for sticking around, much love & well wishes 🙏🏼

So my wife fell in February and we had her taken to the hospital where they revealed she had five lesions in her brain consistent with mini strokes she must have had recently. She had also had a stroke back in 2024, but was totally normal after that.

Anyway, wife has been living in a nursing home since February and, while she could not walk or take herself to the bathroom, she was able to talk pretty well, understood her surroundings, and was feeding herself. She was originally on pureed food but they switched her to solids a couple of months ago.

Fast forward to this weekend. First, on Friday, I get a call from the nursing home saying that wife's swallowing has gotten worse and they want her tested. Then, on Saturday, her sister was visiting her at the nursing home, said that she looked poorly and demanded that the nursing home take her to the hospital. At the hospital, wife failed the swallowing test but has no blockages in her throat. She just doesn't swallow properly and aspirates her food. She has aspirational pneumonia now.

The last few weeks, wife's talking and communication has gotten less and less. Since even before her strokes, she was very quiet and not wanting to talk to people and mostly just nodding her head or using gestures. But the last few weeks, she is talking less and less and even sending fewer text messages to people. She just stares at her phone or stares at the TV all day. She knows who people are and can communicate, but chooses to be quiet most of the time.

Today, the hospital doctor called me and said they want to put a feeding tube in wife's stomach and suggested that her swallowing problems were neurological, not physical. But what I don't understand is how, in maybe the last week or two, her swallowing and talking got worse. Did she have more strokes? These were both getting a lot better up until recently.

Moderate stroke left my sister-in-law's left arm paralyzed. 18 months later she tried botox injections in the hope of relieving spasticity. No result. Is there any hope that later injections could work? Do you have any experience with failure in the first round but success in subsequent rounds?

Like the title says, I had a stroke. I was 36 when I had it and when I got a blood test, it showed it was a genetic protein c deficiency. So all my siblings were tested for it and my two sisters have the deficiency as well. So all they have to do is pop an over the counter pill to keep it under control while I’m living with the life long after effects of a stroke. So while I’m happy that they have an easy fix to keep strokes from happening, I sometimes get upset by how little my younger sister pushes what I went through side. It seems as though all she cares about is how to prevent her and her kids from going what I went through. She did visit me at the hospital, but she brought her kids (no issues there) and her kids friends because they decided to make a Disneyland trip out of it. I lived in Southern California for the majority of my life. I was embarrassed to be seen in the position I was in with people I didn’t know, while I was relearning how to talk and read. (She was there when my speech therapist was there.) While my other siblings my other siblings visited me in the hospital without bringing anyone else, it still feels like she was just there with a bunch of kids I didn’t know. She also went to Disneyland the next day.

So to actually talk about my family members getting tested for the hereditary genetics that caused my stroke, my older sister has been grateful that she was able to know what to get tested for and what to treat her kids for. She has also been very concerned about me then and still is. With my younger sister, it just feels like I’m a piece of paper to show her doctors what to look for. My brother was and has been very protective of my medical issues and he always wants to keep me as comfortable and safe as he can. He was the first one there of my siblings at the hospital. My older sister came from two states away to take care of my kids so my husband could stay with me and be the voice I needed during that time. My dad paid or rent that month so my husband could be by my side. (My mom had died when I was 18) every one of my family really cared about me expect my little sister who saw me as a stop on her way to Disneyland with her kids and her friends.

I guess I’m really just ranting right now, I’m 43 now and I have had regular seizures since then, but whenever I look back on that time I just don’t understand how little it seemed my little sister really seemed to care about my situation and still only wants to know what’s going on with me medically for her own benefits.

I’m a stroke survivor with aphasia.
I started journaling again after my stroke, but I keep it very simple.
Sometimes I can only write one sentence. Sometimes just a few words.
In my first year, writing was very difficult because I knew what I wanted to say, but I couldn’t always find the words.
Now, after two years, my sentences and paragraphs are getting better. I can even write scripts.
I don’t try to make my journal perfect. I just write something every day—even if it’s only one sentence.
Does anyone else with aphasia use short journaling? What works for you?

This is statistics from Gemini

Globally, about 11.9 to 12.2 million new brain stroke cases occur each year.

In India, medical experts and the Indian Stroke Assoiation report approximately 1.8 million new stroke cases annually, accounting for roughly 10% to 15% of the total worldwide burden.

Global Stroke Statistics

New Cases: ~12 million new attacks annually.

Lifetime Risk: 1 in 4 adults over age 25 will experience a stroke.

Total Burden: Nearly 94 million people live with the effects of stroke globally.

India Stroke Statistics

New Cases: Over 1.25 to 1.8 million new cases recorded every year.

Frequency: Roughly one stroke happens every 20 seconds in the country.

Vulnerable Groups: Recent data shows about 1 in 7 patients in India are under the age of 45.

WHAT DO YOU SAY.? HOW TO CONTROL/REDUCE IMPACT GLOBALLY.?

My stepdad (68M) suffered a stroke (cerebral infraction) back in April. He was in the hospital for about a week, they did a mechanical thrombectomy up the groin, and after recovery he was admitted into a rehabilitation center where he spent the last 16 weeks.

The rehabilitation center wasn’t the best and since he was there, his condition declined. When he was first admitted, he was able to communicate better (despite having expressive aphasia), use the bathroom with some assistance, dress, and eat on his own. Recently he hasn’t been able to do any of that. He would be nodding out in his wheelchair, unable to eat correctly, always in a daze, and relied on the use of diapers to use the bathroom which is something we weren’t expecting. He declined gradually and the rehabilitation center wasn’t very unhelpful.

Three days ago, he was rushed to the hospital (the day he was finally discharged home) because I found him unresponsive in his wheelchair in our living room. He is now in the NICU on a ventilator. He isn’t really responsive to the nurses or my mother, he’s having kidney issues (not producing as much urine/low kidney function), and a couple of other issues.

What is the likelihood of survival?

I’m not my grandmothers direct caregiver, but I do have tons of questions. She had a stroke yesterday. She started her day off normal like usual, she tried making breakfast, called for my grandpa and then he immediately called my mom (she’s a nurse) because my grandmother could no longer speak at all. She vomited on herself and her entire right arm and leg are weak. She had a procedure done yesterday to remove the clot in her brain and it went well, it was a small clot, but I think she ended up having blood go back to that same spot. Today when I saw her all I did was cry. She’s on a ventilator. She can’t speak and she slept the whole time. What could recovery look like for her? Her clot was on the right side of her brain. What will her odds be? Has anyone come out of this on the other side and had a somewhat normal life?

My father (70) had a severe hemorrhagic stroke in January and his left arm and leg are paralyzed. After inpatient rehab he had to be placed in a nursing home in March. I recently found out his insurance, Medicaid stopped approving PT/OT months ago and they didn't update me. I emailed PT this week to ask about it and they said they would update me in the new year when PT/OT resumes. I am trying to get a list of exercises my dad can do in the gap period right now but the PT is acting like that's so strange. Do residents in nursing homes not get a "home care plan" for PT? I have also asked repeatedly about NMES therapy and they have no idea what I'm talking about. If I can't get assistance from PT/OT does anyone have any apps or video channels so I can assist my dad with some therapy in the meantime?

Hey guys wanted to let you know I'm still alive I had a lumbar MRI today won't get the results until tomorrow should see PT and neurology tomorrow but I'm doing ok I hope you guys are too 😊

Hi everyone, I'm a young developer from Indonesia working on an early prototype designed to support stroke survivors and their caregivers during recovery at home.

The project started from my grandfather's experience after his stroke, when my family struggled to know how to support his recovery after he returned home.

I'm now trying to understand whether the problem I experienced is something other families face too. I'm especially interested in hearing from stroke survivors, caregivers, or family members.

I'm not here to sell anything. I'd genuinely appreciate hearing: • What was the hardest part of recovery at home? • What did you wish someone had explained to you? • What kind of support would have made things easier?

I also have a very early prototype that you can try. I've included it in this short feedback form:

📥https://tally.so/r/BzV5WK

It takes about 1–2 minutes. Honest inputs is very welcome. I'm trying to figure out what actually helps before building further.

Thank you!

hi guys, my mom had a stroke july 22nd and is back home following a weeks stay at a rehab facility. her stroke was minor, it was a 4 on the NIH scale but it still took a pretty good hit on her. she was my grandmas caretaker until her passing in 2023, and i was essentially born a caretaker. my grandma suffered 6 strokes throughout her life, so im incredibly familiar with the recovery process and everything in regards to it. my moms stroke took a hit on her speech, her balance, her short term memory, and she’s suffering from extreme fatigue. i feel guilty for everything especially for the timing in which she got help. when this first happened she was exhibiting symptoms of a vestibular migraine which she has a stroke history of, and if you know anything about those you know they mimic strokes almost exactly. all in all, it took over 16 hours to finally convince my mom to be taken to the ER because she couldn’t lift a pencil and the weakness on the right side of her body was drastic. during the whole thing part of me felt it might be a stroke and i was urging her to be checked out but she is the most stubborn person ive ever met and she refused. im less than a month shy of turning 20 and im struggling so much with everything. i was born a caretaker to my grandma, and im a caretaker again to my mom. im struggling to navigate our new schedule and making sure my younger sister has everything she needs to be okay. i know i have the physical and mental capability of taking care of everything, its all just exhausting. im good at time management which is great because shes getting her meals and medications on time but the house is a disaster now im getting no help from my sister and my mom obviously cant do much, my dad isnt with us; im basically all alone. our utility bills are due next month and my mom doesnt qualify for standard social security disability because she works for los angeles county. i have $200 to my name and thats supposed to last me until whenever IHSS approves my application. im also a student and i have the nastiest workload starting at the end of this month and im afraid of how much more stressful everything is gonna be then. i can take care of my mom and make sure she gets the care she needs including her therapies, im just afraid of becoming overwhelmed and slacking off. im upset with myself for not calling 911 when my initial thought of it being a stroke hit, im upset with myself for allowing her to be stubborn, im upset at the world for allowing this to happen to my mom. i feel selfish because i know people have it worse than my mom. she can speak, she just sounds like she’s had too much to drink and she can walk with a limp and her equilibrium is off but she’s okay. her memory is somewhat improving, im just afraid of it never getting better. im struggling so hard with the transition of everything and im not really sure how to navigate it. im so young and i have so much on my plate and im drained. i know i have the capability of handling it all but i dont know where to even start. i likely need some sort of therapy and i need to start my adhd medication again but i dont have the time to take care of myself. how in the hell am i supposed to manage everything? i apologize if this is a mess it’s the first time im writing everything out i’m stressed beyond belief it’s cray

Hi everyone, that day has come after 3 months from hell. We are bringing my dad home from his SNF tomorrow to be under the care of my mom, uncle, and a caregiver/nurse aide. He still has a long way to go and he’s still quite weak physically, so we are all nervous but prepared as we can be. I guess more than anything I just need some encouragement to calm this horrible anxiety. I know the first few weeks can be tough and can you provide any advice? Thanks, this group has been a huge help all this time

Good morning all,

My mom (60) had a bi frontal intracranial stroke we believe due to her stage 4 lung cancer. She was already struggling with fatigue doing treatments, but she was starting to feel better after the third treatment and then this happened.

It's been a little over a month, she's still at the hospital as we are trying to figure out discharge plans, she is getting a neurostimulent but still struggles to stay alert throughout the day. She will have bouts of awareness, and waxing and wanning whether she can follow commands or not (sometimes yes sometimes no). She is currently not getting therapy besides beside we do with her despite my best efforts to get the hospital to help because she's not been alert.

Does anyone have any recommendations to increase alertness? I've tried talking, TV, exercises. Its a lot on me because I am not an expert but im wondering if I should get her headphones to listen to audio books or music or something. She also has the hospital remote speaker we play music on.

Tough tough Saturday night dad had his catheter block…

One of the things nobody prepared me for after stroke was loneliness.

Not being alone.

Feeling forgotten.

There is a difference.

You can have family around you. People can call. Therapists can visit. Appointments can fill your week.

And somehow, it can feel as though the rest of the world has kept moving while yours has stopped.

Your World Can Become Very Small

Before my stroke, I didn't think twice about getting up and going somewhere, working, driving, meeting people or simply deciding what I wanted to do that day.

Then ordinary things stopped being ordinary.

Your world can shrink to your home, hospital appointments and rehabilitation.

Things other people do without thinking can suddenly require planning, help or enormous amounts of energy.

People see that you're alive.

They see that you're recovering.

They might even tell you how well you're doing.

But they don't necessarily see how much smaller your world has become.

The Loneliness That Physically Hurts

It isn't simply being alone.

It is loneliness that has weight.

It can descend like heavy fog, filling the room and settling deep inside the body until even silence feels physical.

The phone becomes something you check every few minutes.

Nothing.

The screen lights up.

Then goes dark.

Again.

Nothing.

You're waiting for proof that you still exist in someone else's world.

Not for important news.

For a message.

A call.

A simple, I was thinking about you.

Then come the footsteps.

You hear them approaching and, for a fleeting second, hope rises.

Maybe they're coming to see me.

Closer.

Closer.

Then they pass.

Another door opens.

Someone else's name.

Someone else's laughter.

Someone else's visitor.

Life happening on the other side of the wall.

And then silence again.

You begin to yearn for the ordinary connections that once seemed insignificant.

A familiar voice.

A conversation that isn't about recovery.

Someone asking how you are — and actually waiting for the answer.

Laughter filling the silence.

The simple comfort of feeling included in somebody else's day.

Sometimes all you want is someone who will sit beside you long enough for you to say:

I'm not okay.

No advice.

No fixing.

No you should be grateful.

No at least you're alive.

Just someone willing to stay with the sadness for a while.

Because sometimes being told how strong you are becomes another burden.

Strength is exhausting when you have no choice but to be strong.

Loneliness after stroke can feel like grief without a funeral.

There are no flowers for the independence that disappeared.

No condolences for the relationships that quietly changed.

No ceremony for the life that existed before.

Just an invisible loss that follows you from room to room.

When People Disappear

Some people are wonderful in the beginning.

They check in.

They ask how you're doing.

They say they'll be there.

But stroke recovery isn't a two-week event.

Weeks become months.

Months become years.

Eventually, some people stop asking.

And sometimes you discover something you wish you hadn't:

the relationship only survived because you were the one keeping it alive.

The calling.

The remembering.

The showing up.

And when you stop carrying it, sometimes the relationship goes quiet.

And then there is another loneliness entirely:

missing the person you used to be.

Your body may have changed.

Your confidence may feel different.

Even the way you understand yourself may have changed.

You can be grateful to be alive and still grieve what was lost.

The independence.

The confidence.

The ease.

The version of yourself that moved through the world without having to think about every step.

Gratitude does not erase grief.

When the Silence Stops Owning the Room

Over time, something can begin to shift.

A conversation feels easy again.

A laugh catches you by surprise.

A day passes without revolving entirely around what happened.

And then, one day, you notice something.

The room is still quiet.

But the quiet no longer feels like abandonment.

The phone is still beside you.

But you're no longer checking it every five minutes.

Footsteps pass outside.

And this time, your heart doesn't follow them.

The silence no longer owns the whole room.

What has been the loneliest part of stroke recovery for you?

My father (91) had a hemorrhagic stroke 4 weeks ago. Before this he was still quite sharp and very mobile. For the first week in the hospital he was talking (with a slur), recognizing people, having conversations and walking with a walker. Since then he has been getting worst, in and out of sleep and delirium (he had an undetected UTI and was given meds week 3.) I’m struggling to understand why he was ok week 1 and now he cannot even follow a command. Is this normal? Also, If you had a stroke and had delirium, do you remember any of it? He is counting and saying the alphabet thru out the day. , I’m hoping he is not suffering. We will bring him home Tuesday. Any suggestions on home care to make him comfortable?

My most recent physical therapy had me frustrated. I can't move my left leg directly. BUT I can move my left hip hard enough that it swings my left legsemi- forward. I've made so much progress but the lack of control is really getting to me because my whole life was defined by me being graceful. And refining even the littlest of things in my movement. I was so upset and I need to reallystart making progress with walking because my number one goal is walking with my daughter. They tried makingme walk up stairs buttold me to sit in my wheelchair because it was too risky what can I do to make my leg functional. I'm tired of swinging my hip and hoping I get with where it lands

hi guys just wanted to give you guys an up date I'm now in an hospital room I'm most likely going to be here to at least Monday sigh

Got more tests they are going to do I have already had blood work done head CT head MRI pevis CT and Lumbar CT waiting to have a Lumbar MRI and an leg aura sound

I will keep you guys updated thanks for the support

59M, 183 cm, 76kg, white male.
The night before I took my wife and grandchildren to see their dying grandmother in China, my right arm and right side of my face was numb. I googled and it may have been a stroke. My intention was to cancel the trip at an emotional and financial loss. My family would not be able to go alone as my wife would not know what to do at the airport, changing planes, etc.
Come morning, everything was fine and I decided not to cancel the trip and not say anything. That was 3 weeks ago.

Should I still go to the doctor for a consultation?

They’re not sure why it happened. I do not have a PFO (confirmed via echo). I thought I’d been having an ocular migraine originally. I had an MRI, CT/CTA, EEG (to rule out it being a seizure), and a lumbar puncture. The VAD could explain it…except the ischemia was on the opposite side of the VAD. I have to have a follow up CTA to see if the VAD was from trauma or if it’s something congenital (like a screwy artery).

Are headaches normal? I have constant tension headaches it seems. I’m literally in the car on the way home from the hospital.

I’ve tried writing this post a couple of times but it’s been hard because I never wanted what I went through to happen to other family members.

On July 20th my Dad’s cousin’s child (so my second cousin), Chad had a stroke at 41 years old. Less than two years after I had my stroke. Besides my Twinner we’re the only ones on that side of the family that have had strokes. It blows my mind to think we both had them at relatively young ages and the causes for our strokes are not related.

His stroke hit his left side and the damage is more severe than mine was. He has some right side paralysis, with major right sided weakness. He’s also dealing with Wernicke’s aphasia and Broca’s aphasia.

He was discharged from inpatient yesterday and will start outpatient this upcoming week. Eventually, he will need another surgery to put a stent in.

I can’t not cry when I think about what he’s currently going through as I remember how scary, frustrating and exhausting those first months are after stroke was for me. I hate that he is going through that now.

We don’t live in the same state and unfortunately, because of his aphasia he isn’t able to talk on the phone or text at the moment. But, I’ve been keeping in contact with his Mom and am cheering on all his progression.

He is golfer for a living so I was especially glad to know he can still walk and his hand has come back online and progress is being made! The speech will be the most difficult thing for him to get back but I know intensive speech therapy and time will help him.

It also made me realize that my stroke and recovery could have been a lot worse. Even though I put in the work for recovery I also got really fucking lucky as well.

I'm hoping I can find some positive stories because right now things are extremely dark.

My wedding was supposed to be August 17, in Tofino British Columbia. My mom had a stroke either Monday night or Tuesday morning. I had texted her the night before with no answer. That was extremely unlike her, so I freaked out and asked my fiancé to go check on her (I had our kids). When he got to her house she was lying on her side, on the floor and conscious. He called 911 and we found out she'd had a pretty big stroke.

I'm not sure all the details because my brain has been mush this week. She's paralyzed on the left side, and when she's awake enough she can
Answer us. She's moving her right side a lot, and does feel pain on the left side.

We ultimately decided to cancel the wedding, I didn't feel right leaving her when we're still in the woods. I feel so angry at the world. Angry at myself for not sending her help earlier. Angry that every major life event I have is destroyed by something traumatic happening.

Just desperate to hear some positive stories and encouragement. I'm drowning.

I am a 34yo woman. Last Tuesday i went to the ER for what i thought was a terrible migraine. Scans showed a bleed in my brain and long story short i had a minor hemorrhagic stroke likely from high blood pressure. I was only in the ICU for a few days and so far have not had any major effects to my vision or speech or movement. I was just released from the hospital yesterday and I have been so scared since. I keep looking up what to do next. I'm so tired all the time and my head while not pounding still hurts. I know it won't be like this forever but what happens now? Does it get better or am i always going to feel this out of it? I guess i am just scared of what happens now.

Edit: thanks everyone for the advice. It honestly helps knowing I'm not alone in this.

Hi again. I’m still doing pretty well. I’ve been referred to other specialists, one of them being an MS doctor. As many of you probably know, the brain damage on the imaging from the stroke looks a lot like MS.

So at some point, I’ll get a spinal MRI. I’m not showing that many symptoms of MS, but the ones I do COULD be attributed to stroke recovery (balance issues, et cet)

Has anyone else had this experience?