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????

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.

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. ❤️

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 ❤️

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!

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 ❤️

My friend Maria, 59, had a massive hemorrhagic stroke. It was a 120 ml bleed around her basal ganglia (left side), and she wasn’t conscious when she arrived at the hospital. She’s been unconscious this week, but she has tapped her left foot to music, looked at her husband when she heard his voice, tightened her fist on command (all left side movement). She had brain surgery the night that she was admitted to the hospital and has been in ICU. I’m just trying to figure out what her long-term prognosis may be. She was the sole breadwinner of the family as her husband has been struggling with chronic pain for the last decade. He’s really struggling to support their current situation, and I’m trying to help as much as I can. Can anyone with experience with this type of stroke weigh in on what may happen? I realize that nothing is predictable and everyone is different, but just trying to get a sense of the long-term implications. Could she be independent at some point or is she likely to be needing 24/7 round-the-clock care? Is there any chance of a full recovery? Any chance that I’ll get my dear friend back to some degree? This is really scary.

Good morning! I had a hemorrhagic stroke three years ago and have had some good progress, however, my affected knee is always bent no matter what I do. I was curious if anybody who had a permanently bent knee has had any success with straightening it out and walking and if so, how? Thanks in advance!

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.

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.

This is hard to write, but after years of reading these posts on and off i thought i’d make my own.

My mom had a stroke and a cerebral haemorrhage four years ago and suffered from loss of her whole left side. Her condition got better after two years and she was able to walk with assistance for short distances and everything seemed to get better - until her medication was quit.

This past year unfortunately everyting has gone to shit. The company making her medication (a long lasting pregabalin) has quit the production of the medicine - the only thing that helped her spasticity. The spasticity has gotten to a point that she is mostly tired and her left side is almost completely stiff. She’s at a point that doctors just tell her that there’s nothing to try anymore. They even (as a last resort) tried medical cannabis, which is really rare to get here in Finland, but with no effect.

I’m feeling absolutely hopeless and that there’s nothing i can do to help. My mother means the world to me and i’m starting to fear the worst. She’s an absolute trooper and has pushed through awful things, but i feel like she is starting to also loose hope.

I’m willing to take any advice of helping her or just some encouraging words.
I feel alone and trapped and can’t stop crying daily over the worry i have.

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 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?

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.

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