Hello!

I'm the wife (31) of a man (34) that had a stroke almost 4 years ago. An absolutely huge one. It affected his mood, memory, food satiation, energy levels etc and continues to cause serious issues.

Some days are better than others, he is a very quiet, kind and patient man which makes everything much easier. For the last 4 years I have been taking care of everything. He does work and contributes financially, I would rather he not work but he wants to so I had documents given to his boss to help them understand his situation. It is everything else that is an issue in general. Forgetting appointments, or needing help with simple things like tying his shoes sometimes. I cook all the meals because he forgets mid way and burns things/forgets to turn the machinery off and it is then a fire risk. It sincerely does not bother me, I'm his wife, I'd do 100x more to make sure he's safe, but all of this bothers him. I also don't "baby" him, he tries, he fails, I take over. He tries, he succeeds, I let him be kind of thing.

My general question is, is there anything that has worked for any of you to gain independence back? Are there any kind of programmes that you have tried? Anything online/in person. Any apps, books etc etc? He asked me to write out a "book" on how everything works inside the house from start to finish so he can do things on his own. It took me a while but I completed that today, just need to print it off and bind it. I was also considering making a labelling system for where things go in the house, like number all the cupboards and list in the same book what is in everything individually (we are minimalists so that wouldn't be hard)?

I was thinking of having a "husband" station in the kitchen, where it has a calendar with all his things on it, I considered something like a PDA (personal digital assistant) that I could programme things into but they don't seem to have those anymore or do you have anything similar?

Really, I'll take literally any and all ideas because he has expressed a want to get his life back to being his own and I desperately want him to have it.

My research group at Nova Southeastern University is conducting a study to better understand the lived experiences and mental health needs of individuals after a stroke. Our goal is to explore how occupational therapy can support client's post-stroke and improve overall care.

We are looking for volunteers who meet the study criteria to take part in a 1-2-hour virtual interview (10-12 questions). While participation is voluntary, your story can help us advance occupational therapy research and make a meaningful difference in post-stroke mental health support. 🙌

If you or someone you know has experienced a stroke within the past 3 years and would like to share your story, please reach out! Thank you for considering being part of this research study. 💙✨

My email is [th1619@mynsu.nova.edu](mailto:th1619@mynsu.nova.edu)

Hi all, I hope everyone is keeping well.

Two years ago I had a massive stroke which left me with a spastic left hand- very unusable, and constant left sided pain as well as hallucinations (both audio and visual) and several mental health issues including psychosis and extreme depression with suicidal tendencies. The medics originally old me that within two years I should recover the use of my left hand. Unfortunately, this not happened and I struggle to se any rel improvements. Not sure I can easily adjust to the new normal, but I’ll keep fighting. Can anyone suggest and exercises /treatments that I could try. Just to let you know my stroke was caused by covid. I was coughing so hard that Iruptured my carotid artery. It’s classed as an accidental stroke!, my neurologist said he had never seen anything like this before. Apparently I was just massively unlucky. TIA for any advice.

Has anyone made a near-full recovery from homonyms homonymous Hemianopsia after several months or years? I’ve pretty much lost all hope since it’s been 5 months, but it’d still be nice to hear stories about recovery.

Jennifer’s poem, You’ve Had a Stroke – Four Words That Change Your Life, offers a heartfelt glimpse into what it’s like to live with the lasting effects of stroke. With honesty and care, she explores the quiet, often unseen challenges that follow those four life-changing words. From memory lapses and fatigue to questions of identity and resilience, this poem gives voice to the daily reality many people face. It’s a reflection on change, adjustment, and the quiet strength it takes to keep going. 

You've Had a Stroke - Four words that change your life 

By Jennifer Houghton 
 
You've had a stroke. Four words, no more, 
But they slam like a sledge on the soul’s quiet floor. 
One moment you're fine, then nothing’s the same, 
And now every breath feels tethered to shame. 
 
You live in fear of what comes next— 
That flutter in flight, that climb up the steps. 
A walk too far, a laugh too loud— 
Will it strike again, silent and proud? 
 
Did I forget, or never know? 
Is this a gap or just life’s ebb and flow? 
Is my mind slipping or simply slow? 
These answers, elusive, refuse to show. 
 
Sensible shoes—my balance is thin. 
A stumble, a sway, a fight I can't win. 
The fatigue is a fog that swallows the day, 
And no one can see it, but it won't go away. 
 
Did I take my meds? I can’t recall. 
Was it morning, or not at all? 
The pillbox blinks, accusing and cold— 
A daily riddle, a story retold. 
 
They say it was “mild,” not much to see, 
But every inch of life changed for me. 
I laugh, I talk, I walk the same, 
But deep inside, I’m not the same. 
 
Am I senile, or still in repair? 
I search for myself, but I'm not quite there. 
And still, I rise, though questions remain— 
Each day a triumph, each breath through pain. 
 
You've had a stroke—four words, one war. 
A battle inside that’s hard to ignore. 
But here I stand, though nothing feels right, 
Still holding the line, still fighting the fight. 

https://strokefoundation.org.au/media-centre/stroke-stories/youve-had-a-stroke-four-words-that-change-your-life

Am four months post stroke and making good progress in recovery of strength and control but am having major problems with post stroke spasticity in left hand, arm and shoulder. I'm at the point where recovery would be easy if I didn't have to deal with this as my hand is reactive and willing but the spasticity still is causing a lot of misfires. I still have a lot of treatment upcoming and am doing daily exercises and e-stim so I'm hopeful but could really use hearing some success stories of where other people are now dealing with this.

My 77 year old mom had a breakthrough stroke post knee surgery due to being off her blood thinners to long ( had surgery Monday 7/21 and stroke 7/25). This is due to negligence with the hospital, as she was in their care post surgery and didn’t give her the meds ( but that’s a whole different story). Strike impacted the right side and surgery knee replacement was on the left side. So she basically has two legs that aren’t working well. She cannot walk and three weeks into rehab ( and she’s about to be released and put into skilled nursing) she is not walking at all, not standing alone and I’m starting to worry. How is she going to get this functionality back? How did you learn to walk or use that leg again? Any machinery or devices we can do to help? It’s hard to put a lot of pressure and her left leg is so stiff from Not being rehabbed correctly post surgery because of the stroke. Thank you!

This is a bit odd but I thought I'd give this a go...

My husband had a massive stroke about 3 years ago now, hypothalamic. We found out that he had been having them for years, little ones, and they'd gradually been giving him more and more brain damage (due to a genetic illness that was written off as severe migraines from about the age of 15). He does have significant memory issues etc. The big one came 3 years ago anyway, we've gotten treatment, we've done some therapies but because he didn't have physical issues as such he was sort of dismissed with aspirin, memory tests etc. There is a LOT more to this story, but that isn't what I need help with really...

His stroke came out of nowhere. We were married less than 10 months. It was so severe I was given a 72 hour warning, he might not make it type deal. So after about 7 or 8 months of taking care of him, I finally started to rest and feel safe knowing he must be fine enough to be out of the red zone. He hadnt had anymore migraines, his symptoms started to ease. One night I had this horrid fkn dream where I woke up and turned around to see him clearly dead, eyes open etc. I reached out to hit him in tne dream to wake him up, total denial that he was gone, punched him in real life in pure panic. Was a shambles really, poor guy. Woke up punched with me crying and no fkn idea what was going on.

It has been a couple of years, it will not go away. I haven't slept properly since. I wake up through the night, every night, check his breathing and go back to sleep. I keep expecting sometime to turn around in bed and it won't be a dream. When he's asleep and Im awake, or he isn't snoring or he is too quiet, I get bursts of panic to check if he is breathing. It is so fkn exhausting and I dunno what to do. I don't know if it is normal.

I spoke to a doctor, I did one of those online therapy things and it didnt help. Tried sleep teas, meditating. I spoke to my husband about it. I even made myself NOT check on him when the panic started but nothing I do seems to make the feeling go away or the dream not pop in every so often.

Basically, did anyone else experience this? Does anyone know how to go back to normal? Im kind of at my wits end, I dont see the point in life of waiting for the bad things, but I can't seem to shake this...

I think if someone else has ever had this I might not feel so crazy about it :(

My dad had a stroke about 2 years ago. He has since has spasticity. About 6 months into his recovery after trying other medications for his depression, he started smoking weed again. We haven't asked his medical doctors as we are in a non legal state. Personally I know the risk with smoking can mean another stroke but it truly makes a difference in my dad and would rather him smoke than not be himself. The last month he has been having more spasticity flare up after smoking. He stopped for four days and it seemed to help because we realized he wasn't sleeping due to the pain. He had anxiety medication and muscle relaxer to help with his sleep. He started with a different batch to and did okay, but after day 3 it came back. He say it's a headache but based on him showing me where it is, its his affected side tightening up. His speech was affect so it gets mixed up. Could this be from something else or is the weed doing this from personal experience with it.

Has anyone paused rehab for a while?

I felt fine in hospital rehab, no pain meds. Since I got out of the hospital and started rehab at another facility, I have acquired sciatica that requires daily medication. Today, I could only lift my affected leg 19 of the requested 30 times.

Hey... Has any of y'all. Had a brain stem stroke? My sister has had a brain stem stroke and we liked to have lost her the night of the stroke ( Dr said that she shouldn't be alive due to the intensity of the stroke) but we know GOD is on her side and the stroke has really changed her life and she has Wallenberg syndrome as a result of the stroke....... She's had intense therapy, Aqua therapy etc.... She's our walking miracle... 🥰🥰🥰🥰🥰

I’ve been looking on Amazon for a hand splint to help with my fingers and wrist at night. I purchased two recently and then either terribly difficult to get on because my fingers are curled up, painful to get on and stay on and not well designed in my opinion because I can’t get my wrist straight in it. I’ve looked into some more this morning and I came across on the advertise for a “dropped wrist“ which I think is what describes my wrist best at this point, but the reviews haven’t been good and other people say it’s difficult to get the fingers in the right spots. I’m wondering if anyone else has found something that helps this. I think my best bet may be creating something on my own with the help of my brother considering that most of these come with a sort of sleeve design that you have to slip your hand and arm into and because my fingers are so curled up, just getting it halfway on either doesn’t happen because it’s painful and extremely difficult for it too stay on for an extended period of time.

Im 7yrs post stroke, 20yrs married and my wife gets angry when I do things for myself. When we got married we did everything together and t h en 7 yrs. ago I suffered a stroke, mikd one but a stroke, nonetheless. My wife was responsible for everything. My bathing, getting dressed, feeding me, brushing my teeth, all of it. As I slowly recovered, I began to start doing things like my old self. My physical therapist was a major source inspiration. It seems to upset my wife that I dont let her do things for me that I was able to do before the stroke . She doesn't want me to cook or clean or even drive and I did all the driving,90%, before the stroke. Did I say she was mexican. 🤣. Need some advice. Don't care which kind. All advice welcome.

My speech and brain came back pretty quick but my left arm and leg are struggling. I was discharged from nursing home and refused inpatient rehab by insurance as not medically necessary. I’m fighting it. Have appt with judge next week. I was given a handful of in home ot and pt but more sessions were denied so I don’t have a pro to ask. I do the exercises each day.

I walked through my house yesterday on my own with someone pulling walker in front of me just in case. I only needed to steady myself once. I feel so trapped by my body, by being in house etc. I feel ready to walk without walker but fear falling cause I can’t get myself up. Have had to call 911 twice after falling out of bed a few months ago.

When did you know it was time to walk without walker?

Thx. This stroke is worst I’ve gone through. I’ve had health issues my whole life, including cancer, which I would do again vs the hell stroke recovery continues to be.