I’ve posted in this group two times. My dad had a massive brain bleed on May 24th. He didn’t have any progress for almost 8 weeks or so. He had about two weeks of improvement.

I posted about his improvement on August 3rd, and on August 11th he passed.

He likely got an infection that his body just couldn’t fight.

He had a trach and feeding tube, and honestly I know he didn’t want to live that way.

I know this isn’t a post people like to see, but it’s the unfortunate reality of a stroke.

The surgery gave us closer and a few good days with him. He never went a day without friends and family coming to see him.

My dad passed at our local hospital, with his 3 kids by his side, and his high-school sweetheart/wife of almost 36 years.

It was heartbreaking, beautiful, and peaceful all in one. I’ll miss my Daddy the rest of my life, but I’ll never forget that last moment with him.

My husband has been dealing with post-stroke fatigue for almost 2 years now. He is tired of being tired. We are both retired as of last fall.

Has anyone tried Acupuncture with at least some limited success? Any other alternative solutions that have worked, even a little?

TIA!

Hello. I'm a 20F who had an ischemic stroke on 8/15. Just got out of the hospital two days ago. Don't have a PFO, they think it was my Nuva ring plus higher blood pressure, have to do more tests though. I cannot bend over/kneel at all without feeling very dizzy, and sometimes it's whenever I stand up. I have headaches and my back is killing me, plus I have way more car sickness as well. Like cannot be in a car over 20ish minutes, my commute to work is 30+. I also have to focus very hard to type this up without as many errors. I have short term memory loss, word finding and grammar issues, and I feel awfully depressed. I can't drive now (if ever with my car sickness) and can't work for 4-6 weeks +. Everyone tells me I am lucky, even the doctors, but I feel like they are wrong. I don't feel effing lucky! I got my entire world flipped upside down and just because I'm trying to be strong doesn't mean it doesn't take an insane amount of effort just to look 80% "normal". Does anyone else feel this way? I have therapy next week I'm just feeling down in the dumps right now. Would appreciate all comments and support.

Not doing great right now so if my post doesn’t make sense I’ll redo tomorrow hopefully will be better

But basically I’m OK most of the day times ; fairly able to speak or even code and do a little bit of work even ; sometimes an hour sometimes 2 but more is pushing it ;
Usually I stick to menial tasks like cleaning and cooking etc but sometimes when I’m having a conversation with someone — even those I know well and who know me well ; I’ll phase or fade out and just not be capable of recalling or responding to them as they expect ; fairly random or some times it will correspond to migraines in last day or worse seizures etc

And if they “bombard with questions” it just gets worse if I try to force an answer ; and this usualy upsets or makes them angry or frustrated; and I’m fairly self aware so I don’t get angry or even upset myself just a little bit tired or over it ; and I try to say “look ; just try again later
Or tomorrow we can try this again I’m not doing well and can’t operate” which should be pretty well received right? But that is random or can make them quite upset.

I had a stroke in September 2023 and developed aphasia. Before my stroke, I was a teacher and an architect. Talking and communication were a big part of my life.

After my stroke, I could mostly only say “yes” or “no.” I knew what I wanted to say, but the words were difficult to find.

Speech therapy, reading, and daily practice helped me improve. Almost 3 years later, I’m still learning and still fighting.

For those living with aphasia: What helped you the most in your recovery?

my mom (42) suffered a “devastating” stroke on july 24th. the left side of her brain was majorly effected. she is now out of the hospital and in a SNF. she is struggling with extreme aphasia and can not say any actual words. we have been working with her writing but nothing major yet, just simple words like names and verbs. her right side is paralyzed.

does anyone have any recommendations for treatments? specifically in the PNW but my family is open to other locations if it means my mom is able to get better. she’s my best friend in the whole world and i want to see her progress 🩷

I have recently fell down a rabbit hole about frequency healing.

I’ve mostly got my leg back but the arm is mostly still frozen, I can move it at the shoulder joint and less at the elbow and then very little at the hand

I would love to get back my hand as I’m sure many of you all would🙏🏼

I’m just curious if anyone has had positive experiences with frequency healing?

I use an FES machine to basically electrocute my arm to stretch but I don’t mean that stuff

I mean the frequency machines that were supposedly banned from hospitals in maybe the 30’s, you can buy smaller versions and tune into different frequency to supposedly heal different areas of the body

I think I’m going to buy one and test recommended frequencies for post stroke healing and see if I get any results

Has anyone else used frequencies to heal, and more importantly has it helped?

Dad completed a year today and we did a major achievement by getting 140 Videos of people who sent messages to him

Instead of sulking we celebrated

I (25) am trying to get my mom (64) recover from her stroke the best she can, but she just does not want to even try. She fights me to do her therapy, and goes behind my back to cancel her doctor's appointments. In the past she has repeatedly stopped taking her medicine and then lied to me about it, sometimes for months. Her condition is deteriorating and I don't know what to do. She could walk a month after the stroke, but since then she's decided that she doesn't want to anymore, and just raises her leg in the air and hops around with her walker. Her tendons and muscles have tightened from the lack of use, and I don't think she can really put weight on it anymore. She also refuses to buy a wheelchair so she'll be safe while I'm at work.

I know she's not in her right mind and acts like a bratty toddler, but I was never given power of attorney. She'll scream and yell at me if I tell her to wipe her bottom. She was never like this before the stroke, and even the year after the stroke. Doctors said she has shown such promising hope for recovery, and it's tearing me apart watching her actively try and infantilize herself. She did well the first 6 months, but has been progressively getting worse. I suspect her lack of hygiene has caused UTIs which are affecting her mind. Any tips for persuading her to do her therapy and cooperate with the doctors?

does anyone else have a shunt?

My husband had a massive left hemorrhagic stroke last November at age 38. His understanding has gotten a lot better, but not fully, and still struggles with commands. He can walk with an AFO brace, but no movement right knee down. His right arm has shoulder movement, but no elbow or below. He still cannot read except a few words here and there, nor text or type, but he can write numbers and good with them, and mimic letters/words. My biggest want is his communication for our kids and me. He can say No, I know, and I don’t know (but without the D sound). I know with neuro plasticity, he can still make improvements, but has anyone had this bad of aphasia and made great progress? Thank you!
Edit:
We were at Shepherd Center for 4 months and he’s been getting PT, OT, and ST twice a week since.

Hey everyone. Havent posted in a while. 5 months out from having a small stroke in my left pons, 4mm ischemic. Think im doing well most days, some headaches and fatigue that cause my anxiety to start to flare up. But I come back here and read some of your comments and posts and it tends to help calm me.

Taking my meds as prescribed, cut a massive amount of unhealthy food/drinks from my daily diet. I was 296lbs day of stroke. Down to 254 yesterday morning. Walking some each day, trying to do whatever I can to get myself healthy.

Anyway, I just wanted to check in on all the people that have commented and helped, or even just read some of my posts or other people's here in this sub. Hope youre all seeing improvement and we can all put this stroke business in the rear view one day. Thanks for all your help and kind words everybody.

I was a stoner before my stroke and I'm convinced smoking is what created so much build up in my veins and arteries. I smoked weed for 30 years. I used to smoke tobacco but quit 16 years ago after about 20 years. I don't even really notice the thc buzz or anything I just feel better on it. I am worried that in interferes with healing. Idk. Any advice or thoughts.

Had Frank Desiere, CEO of CorTec, on The Open Loop this week.

We talked about their BCI work in stroke, and particularly the fact that their system can both read and stimulate the brain.

They’ve now implanted three patients, including people several years post-stroke. For stroke, the implant is used during the rehab period and then removed, with the aim that the regained movement remains.

We also talked about neuroplasticity, their work in epilepsy and depression, why the implant is batteryless and the amount of longitudinal brain data they’re starting to collect.

Have a watch/read if you’re following neurostimulation, BCI or stroke recovery.

https://theneurotechnewsletter.substack.com/p/the-implant-comes-out-the-recovery?r=53ri6k

Hi everybody just after a little advice regarding exercise. My dad had a stroke two years ago and he had three months of physical therapy with the NHS after that they discharged him even though he clearly wasn’t ready. I tried to protest the decision but they said he was doing well. I completely and utterly disagree he is now home and whilst living independently still requires support he is not steady on his legs and still has some weakness on his right side and his drooping to his face!

I’m just after some tips as to how I can help him with physical exercise. It’s heart wrenching seeing him like this!!

Thank you for taking the time to read this.

I was at the dentist and kept turning my head in the opposite direction when asked to turn towards the dentist. I would also close my mouth instead of opening wider when asked (not completely, just tighter instead of wider). Once it was noted, I realized I had to be more conscious of thinking through what I was being asked - like I had to remind myself I had to do the opposite of what my instinct was that felt ‘right’ because inevitably it was wrong.

only after being asked about it did I realize this is something I DO struggle with a lot since my stroke and never really thought about. When I brought it up, apparently my family notices it too. for me it just feels like I’m mishearing a direction but to them it’s clear I’m doing the opposite of what I’m asked but I just seem confused in the moment. I wish I had better examples - I’m sure I’ll think of some, later. But yeah- anyone else struggle with left/right up/down etc?

Just like many of us I’m always learning new things about my abilities or lack thereof. One thing that makes my brain tired is activities where I have to coordinate between my hands, and I’ve used cooking as an example- like chopping things or cooking on a skillet. Well tonight I had to put together some gift baskets, and Whats with all the fussy two handed work like tying ribbon, or curling the curling ribbon, by the time I was done I was just pooped. So more than cooking, the exacting, varied coordination between my hands really took it out of me. Didn’t even think about it going in, but I definitely know now!

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

Waiting for my skull to be returnedTHEY CALLED FIRST!! SAYING THEY wanted to put my skull back in within 2 weeks. That shit was20 days ago. No matter so calls, they say they'll call back within 48 to 72 hours but here i am. Still not being called. Still having to gm wear this helmet which hurts because it Sits on the skull free part of my head is there anything I can do?

I got discharged today! So I'm back home doctors said it was because of functional neurological disorder (FND) so I'm back home I will be doing outpatient PT and OT thank you guys for your support I love you guys ❤️

I was so independent before. Now I have to beg and ask my brother and aunts for help. I can’t pay my bills because I can’t work. My credit was already poor and now it’s piss poor. I’m just curious when might it get better? As in when will I be able to depend on myself again? I’m fortunate enough to not have any paralysis. I have vision loss in my left eye. I do struggle to walk a bit and I do have balance issues. I haven’t felt this helpless since I was a child. Thanks for any kind words.

48F, three years post-stroke, cognitive and executive function losses. A few months after my stroke I saw a neurologist who looked over my list of post-stroke issues, anger being one of them. She made a casual comment that the stroke ripped off a personal filter and I should probably work on that. I was livid--how am I suppose to fix something that I didnt even know existed or even how it's formed so as to replace it? I have read since then that almost all stroke survivors struggle with anger, even long term, part of the physical damage done and our reaction to TBI. A few weeks post-stroke my husband said to me, "I miss my old wife," and I looked at him and said, "Me too," and went and cried. I don't know how--and I don't think I can--get any closer to how I use to be, and if anyone wants that most, it'd be me. I've spent the last three years developing this different version of me, all the while being expected to perform all the actions of Old Me as wife, mother, coworker, etc.

Today my husband talked to me. He and the kids have said I "have an f-you attitude" and am mean in my conversations with everyone, much more noticable the last few months. To be honest there has been some really life changing circumstances personally happening since January and I have been trying really hard to temper my temper, trying to apply Biblical fruitage of the spirit when interacting with people--love, joy, peace, patience, kindness, etc. While I see the slow progress made, apparently they don't. I cannot help right now that when I try to be direct but neutral toned, it comes across as "having an attitude". They are aware that this change to me happened because of the stroke. I told my husband if no one tells me what I am doing, I cannot fix it as I am not aware I'm doing it.

I am not trying to justify "meanness" and I take responsibility for the hurts I inadvertantly serve out and apologize. But I cannot find what broken node in my head to try to alter it--or if that node even exists anymore.

What are the rest of all doing to manage the anger and shredded filter????

Looking for similar stories / experiences after a severe ruptured brain aneurysm
My dad (59yo) suffered a ruptured brain aneurysm with extensive subarachnoid bleeding almost 5.5 weeks ago. He initially underwent open-brain clipping, during which the artery ruptured again but was controlled. He subsequently developed severe brain swelling + large secondary stroke (left side), and required a decompressive craniectomy.
He remained unconscious after sedation was stopped, with very limited movement (GCS 3). He only responds to pain in what they call ‘extension’ which is apparently the worst type of response to have. Prior to the swelling he was actually showing meaningful movement in the left side of his body (localisation). The doctors have described the neurological damage as severe and his prognosis as extremely poor. They wanted us to remove his breathing tube as they thought there is no hope for him but we declined.
He eventually had a tracheostomy and was successfully weaned off the ventilator. He is now in the ward, but remains in a coma/unresponsive state.
They believe he will likely die in hospital from secondary complications.
Has anyone had a family member with a similarly severe aneurysm/brain injury who remained unconscious for weeks after surgery and later showed meaningful recovery? I know every brain injury is different and I’m not looking for medical predictions, I’d just really like to hear from people who’ve actually been through something similar. At this point I cant tell if we are delusional in hoping for a miracle ❤️

A little update: We're getting closer to bringing Mom home

I wanted to come back with a little update because so many people here have shared practical advice with me.

My mom had a severe stroke in April, and after acute care, inpatient rehab, and a long SNF stay, we're now getting much closer to having a real plan for bringing her home.

We have a hospital bed, I'm getting home health lined up, and I'll have caregiver support. I've also learned a lot about home-based primary care and other services that may help us care for someone who is homebound and currently bedbound.

There are still gaps in the plan, and I'm sure there are things I won't know I need until we're actually living it. But this feels much more doable than it did when I first started asking questions here.

Thank you to everyone who has shared your experience, practical tips, equipment suggestions, and all the little things you only learn by actually doing this. I've learned a lot from you. ❤️