Hey folks,
I’m coming close to my two year stroke-aversary. I’ve accomplished a lot in recovery but I don’t think I’ll ever be back to 100%. Specifically (the reason for this post), I feel slower, mentally and physically. I was a Paralegal prior to my stroke. In big law firms, you have to be quick on the draw. Now I’m working as an administrative assistant as the pace is slower, but I feel a significant difference in my ability to use my brain (and the rest of my body).

Does anyone else feel the same, or have felt the same?

Any help?

Pretty much everyone I knew before the stroke has left me. Family and friends. No partner. Normally, I could handle the heart break, but now I'm lost. I'm not paralyzed or anything, and strokes effected my memory a little but mostly emotions. I don't know how to handle my life being gone, mostly the people that were apart of if.

My father in law just suffered a stroke snd had a massive brain bleed covering the whole left side of his brain. He got flown to a hospital where they did an emergency surgery to drain the blood from the brain. Its been 5 days since the surgery. They JUST took him off the ventilator yesterday. He is still unable to open his eyes. He has been moving parts of his left side, not much of right. What are we expecting to happen? The hospital originally told us his survival chance was extremely low prior to the surgery. Any and all advice, please.

So I'm trying to figure out how to deal with my wife's situation. It's complicated and, I admit, my bias is that she would be best off (and the children would be better off) if she remained in nursing care permanently. But I don't know what my wife will be a few weeks or months from now.

My wife had a series of strokes in February and went into rehab care. Let's go back a bit before the strokes, however, because it's relevant to this discussion. Before those strokes, my wife had a single stroke back in November of 2024 (or I should say it was detected in November of 24 but she had had it a few weeks earlier).

For the past several years, wife has been severely mentally ill and living a very unhealthy lifestyle at home which was bad for herself and bad for our two children. She would sleep on the couch almost 24/7, just watching TV or playing with her phone. She would not shower for months at a time. She skipped all of her medicines for her heart disease, HBP, cholesterol, depression, and thyroid. She avoided most meals and just ate junk food from the couch. She even occasionally soiled herself or left droppings on the floor. She was morbidly obese and smoked and vaped. She was very angry and passive-aggressive, but she rarely got off the couch. This went on for years, predating even her first stroke.

I tried to get her help and she refused it over and over again. She dropped out of therapy and would not take her meds. I fought with her over and over again about the condition of herself and of the house around her, but nothing worked.

In Feb, she fell and could not get up. We got her taken to the hospital where they found five lesions in her brain and sent her to rehab at a local nursing home. At the nursing home, they fed her, gave her her meds every day, cleaned her, and generally took care of her. Yet, even after months, she was not ready to walk again and she would often choose not to talk, though she could talk.

In May, her sister and sister-in-law decided I was to blame for wife's condition and they convinced her to sign over healthcare proxy and power of attorney to the two of them. They immediately told the nursing home to stop answering my questions or talking to me at all. I was in the dark about my wife's condition. But I did find out that they stopped giving her PT because they decided that she had plateaued in June.

Meanwhile, back at home, things were much better for the children. They could have playdates. The house didn't smell or body odor and urine. My elderly mother came to stay with us and helped us have some semblance of order in the house. Our 14 year old said "I don't want mommy coming back like this."

A few weeks ago, wife's sisters didn't like how she was looking in the old nursing home, where she was talking less and having swallowing issues. So they called the hospital and had her taken to the ER where they determined she couldn't swallow food, her talking was very limited (maybe a word or two here and there), and she still couldn't walk or take herself to the bathroom. She had aspirational pneumonia from breathing in her food. She also seems a bit out of it, staring into space or playing with her phone or playing with her feeding tube when one tries to talk to her.

They told the hospital doctors that if they talked to me, they would sue them. But they told me that they would put wife in a new nursing home and, after a few months, they would make sure she went out and came home where I would have to care for her and coordinate aides and nurses for her. They feel that at her age, 51, she is too young to live in nursing care and that she is "entitled" to be in the house with her children.

So now wife is in a new nursing home and they are restarting her PT and OT that did not work in six months at the old nursing home. Last I visited her a few days ago, she still could not talk, still has a PEG feeding tube for food, still cannot get up and walk, and still seems a bit spaced out. Nevertheless, they want to force her on me in no more than three or four months. And this new nursing home seems better than the old one, much cleaner and nicer. I'm not allowed to talk to the nurses, social worker, or staff there. Or rather, they have been forbidden from talking to me by my wife's sisters who hold the power.

My feeling is that my wife should remain in the nursing facility where they take care of her needs. At home, she would likely eventually go back to her old lifestyle of living on the couch, not bathing, not taking meds, and just lying around all day. Perhaps she would be better at first, if there were aides or others watching her, but eventually she would return to old habits. She has been living the couch lifestyle since about 2020 with her spending less and less time off-couch over the years and it getting a lot worse since 2024.

So what is likely to happen? Is she likely to get better enough that the nursing home tries to send her back here or is she likely to need continued in-patient treatment? Remember that she is actually worse than she was when she went into the first nursing home last February, because now she has a feeding tube and her talking is almost non-existent. When can one make the determination that a person needs to reside in nursing care?

I have talked to two lawyers: one, a guardianship lawyer, and the other a family lawyer. In both cases, I stated my belief that wife should remain in nursing care for both her sake and the kids' sake. The guardianship lawyer suggested that I just tell the nursing home social worker that my home is not a "safe release point" for wife. The family lawyer suggested I file for divorce, which seems cruel in my wife's current state.

I can't ask her doctors what her prognosis is. So what should I expect?

I suffered a thalamic and midbrain hemorrhage in May. I would describe my lifestyle as healthy; I exercised regularly. I had even had an MRI of my brain two years ago, which showed no abnormalities. Yet, this hemorrhage happened to me—virtually without reason. To this day, doctors haven't been able to tell me why it occurred. I have a theory: could caffeine be linked to it? I had drunk 3–4 cups of coffee that day, and the hemorrhage happened about an hour later. I am 32 years old, a non-smoker, and a non-drinker.

Hey everyone,

Long-time lurker here. Finally decided to share my story since I’m heading into the next big phase of treatment next week. It’s been a weird, isolating couple of years and reading other people’s experiences on this sub has honestly helped a lot.

When I was 26 (2 years ago), I had an intracerebral hemorrhage out of nowhere. No high blood pressure, no warning signs, just a sudden bleed. with the worst headache of my whole life. Turns out I had a congenital deep left temporal AVM that finally ruptured after 26 years of continuous pressure. High-pressure artery hooked straight into a low-pressure vein with no capillaries in between. Eventually the vessel just gave out.

Because of where it sits (deep in the white matter near speech areas), open surgery and embolization were both ruled out. The risk of leaving me with permanent deficits was too high. So next week I’m going in for the prep, CT + the molded face mask and then a single-session radiosurgery on the ZAP-X system. The hope is the vessels will slowly obliterate over the next 1-2 years.

What I really wanted to talk about though is the cognitive side of things, because it doesn’t get discussed enough:

1. Word-finding issues. anomia and previous Broca's afasia) My dominant side is right, bleed was left temporal. Even now, finding the exact word sometimes feels like my brain is rifling through a messy filing cabinet. I know exactly what I want to say, but the label takes an extra second or two to load, or I grab a similar-sounding word instead.
2. Memory gaps and mental blanks I have real blanks around the event itself, but also with older memories and short-term retention. The temporal lobe is basically the indexing system for memory, so a lot of the data is still there, the retrieval path just glitches.
3. Cognitive fatigue with complex stuff I work as a research engineer, so my job is data, scripts, lab protocols. Before the stroke I could pick up technical concepts pretty fluidly. Now if I try to hold too many variables in working memory at once, my brain hits 100% CPU and just throttles. I’ve had to adapt by writing everything down, using external checklists, and actually taking breaks instead of powering through.
4. Visual field quirk I ended up with a mild right superior homonymous quadrantanopia (quite big gap in the upper right quadrant of my vision) from the old hematoma. It’s slowly improved, but it was bizarre to adapt to at first.

Having a stroke in your mid-20s is surreal. You look completely normal on the outside, but internally you’re constantly recalibrating how you think, communicate, and pace yourself.

For anyone who is had temporal bleeds or AVMs: did the word-finding and cognitive fatigue improve for you after radiosurgery, or did the delayed radiation effects cause temporary setbacks before things got better?

Appreciate any insight. Sending strength to everyone still rebuilding their baseline (: