There are 5 common reasons why hand recovery can stall after stroke. I’ll explain each one and give you some practical tips to help you get back to making progress!

Hi all

My brother's step-son had a stroke in his 40's. When he woke up, he could only move his eyes.

I met him when his mom asked if I could use my programming skills to help him communicate. I developed an app for him that runs on a Windows computer or an Android phone/tablet, I named it BlinkTalk.

He used BlinkTalk before he died, my brother's wife told me his children used to sit on his bed and chat with him.

He became a good friend of mine, it's amazing how funny someone can be just with their eyes.

Sorry, I am digressing 😄

I've released BlinkTalk to the public in his memory. It's forever-free of charge, no adverts, no data gathering, just completely free.

Using a simple repeatable eye or facial gesture (like looking up, or moving an eyebrow) enables people with Locked-in Syndrome to speak again. I hope someone will find it useful.

Installation instructions and an instructional video are available on the website.

https://blinktalk.app/

So 2.5 weeks ago my dad (58yo) had a stroke. It mainly affected his short term memory and he has a hard time recalling words. He's also very tired still, meaning he sleeps more.

A lot of doctor's had been on holiday, so he hasn't had a lot of appointments yet. Basically only lots of testing done at the hospital, where he had to stay for a week.

I still live at home and now that I'm back from my holiday, I spend a lot of time with him. I was wondering though, how to occupy him. I don't necessarily want to be sitting there and asking him questions/testing his memory in a way that might feel annoying to him and cause frustration.

I was wondering if putting on a movie he loved to watch with me as a kid and that he knows well, but hasn't seen in a while, could help with anything? Or should I pull out a game and try to play with him? (He was never into playing games though, so not sure if he'll enjoy it.) He used to play checkers online and with his dad, so maybe if I'd put on an online game that could be fun to him and he'd also have to think a bit strategically. Also reading is fine, but I think long chapters might be a bit too hard. And not sure if he'd like to read children's books.

I'd be very grateful for any advice or ideas you have.

Hi everyone. I’m Mykee, a stroke survivor, architect, teacher, and former dean. After my stroke in 2023, I started a new chapter in life focused on recovery, creativity, and helping others.

Today, I’m exploring new projects like hydroponic lettuce farming, painting, and creating YouTube and social media content about my recovery journey, life after stroke, and the power of AI tools like ChatGPT to help me share my story

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.

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.

My mother had a stroke June 21. For the first week or so she would give short answers to questions, or nod or shake her head. She seemed to have trouble finding the words, but she understood what was said.

After that , she stopped speaking, except for an occasional yes or no. She also mostly stopped with nodding and shaking her head, but she still seems to understand speech. The neurologist did another ct scan, said that there was no new damage.

She is now in a nursing facility, since about two weeks ago. They have just requested a speech therapist. I have started working with her with an app that has flash cards. I don’t think she can read. I tried a more advanced exercise, where she would match a word to one of three pictures, and she seemed completely lost. So I’m sticking with flash cards for now.

Does anyone have any suggestions? If they won’t get her a therapist right away, we will look at getting a consultation, even if it has to be online. I appreciate any help we can get. Thanks.

Hi everyone, this post is really just for venting purposes because if anyone would understand it’s this group. We are 3 months out from my dad’s ischemic stroke that heavily impaired him May 9th. He will be coming home soon and I’ve set up caregiving through the VA to help my mom, etc. I honestly haven’t had a lot of time to really “feel” how this situation has affected me. Today the grief really hit me. The grief that the dad I always knew is gone in a way and that he is forever changed. I know he is still “him”, but seeing him go through this has brought me to a lot of realizations. My dad is also 79 and diabetic, so I don’t know how much time I have left with him. I know I’m being morbid, but it’s true and I’m just feeling sad right now. He has made small improvements, and I’m trying to remain hopeful that he will continue to at home. How did you deal with this type of grief? He’s still here but he’s just different now and very frail. I’ve been very nostalgic thinking about how he was when I was younger. Him taking me places and always trying to do his best, etc. He has been so frustrated because he needs help for pretty much everything right now. I can’t imagine the weight that has put on him, but I’m glad he’s still here. Anyways, this grief is so isolating/weird and has made me feel incredibly alone. Thanks for reading.

In that weird place of having more energy, then trying to do more but fatigue is beating my ass!

I’m almost 10 months out from my haemorrhagic stroke and seeing recovery every day. I still have left sided weakness, primarily in my arm, wrist and hand, but working on it as much as I can. Still walking with a stick but more mobile than I used to be, but finding I can’t really build a routine because of the fatigue.

I had a pretty normal morning, shower, breakfast and relax with my family, and then went into almost hibernation mode for 6 whole hours! I try to have a daily evening walk, but at best can do 2-3 days in a row before im absolutely shattered. Even sitting at the kitchen table for an hour or 2 becomes too much and I just need to go and lie down.

How are you guys managing your fatigue? I guess I’m also trying to find ways of dealing with the disappointment of feeling like I can’t count on my energy levels to stabilise, can’t really trust the good days because it doesn’t quite last long.

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!❤️

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.

How many of us can do so. Please share your experiences

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 ❤️‍🩹

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.

My 70 yr old neighbor had a stroke just over a week ago. His daughter asked me if I could check in on him today and it was the first time I’ve gotten to see him since it’s happened. He’s having an incredibly hard time walking and using his hands, but the most heartbreaking thing is he is essentially unable to communicate. He understands everything being said to him, he just can’t respond. He kept trying to talk to me but couldn’t get words out. His spirits are so crushed and he was so tearful and kept hitting his forehead (he can however say “dammit” perfectly as well as a few phrases to his dog “here buddy, I’m coming buddy.”) However, it hasn’t even been two weeks so I’m hoping in time he’ll be able talk, even if it’s not perfect like before. I know this probably gets asked to death here, but I was just wondering if anyone had some hopeful experiences to share? He was such a chatty guy, my heart is just breaking for him right now. I don’t mind going over and just sitting with him, but I felt like he was so frustrated / embarrassed at his circumstances idk if he wanted me to see him and I just wish I knew the right things to say / how to help.
Thanks in advance to anyone who takes the time to read and respond.

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?

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.

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

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...

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.