r/stroke

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.

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.

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.

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?

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.

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!

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.

What I read is

Deep Brain Stimulation (DBS) is a neurosurgical procedure that implants a pacemaker-like device under the skin to send electrical pulses to specific areas of the brain. It regulates abnormal signals to treat movement and psychiatric disorders when medications are no longer effective.What DBS TreatsParkinson's diseaseEssential tremorDystonia (muscle contractions)EpilepsyObsessive-compulsive disorder (OCD)Tourette syndromeSystem ComponentsElectrodes (leads): Thin, insulated wires placed in targeted brain regions through small skull openings.Extension wire: Routed under the skin of the head, neck, and shoulder.Pulse generator (neurostimulator): A battery-powered device implanted under the skin in the upper chest or collarbone area.Procedure Overview Brain surgery: Leads are placed in precise brain targets, often while the patient is awake to test electrical responses.Chest wall surgery: The battery-operated pulse generator is implanted under general anesthesia and connected to the brain leads.Programming: Weeks later, a specialist programs the device externally to optimize symptom relief.If you are exploring treatment options in the area, specialized neurological care and DBS evaluations are available at major regional facilities like Manipal Hospitals or Kauvery Hospital.If you'd like, let me know:What specific condition you are researching DBS forWhether you need help finding a specialized neurologist or neurosurgeon nearby

I'm wondering if it can be useful?

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 ❤️

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 ❤️

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.

My mom (56) had a stroke last month on July 9th. She's still unconscious, she can only open her eyes and twitch the right side of her mouth, with a drain in the head to drain the bleeding and a Tracheostomy.

The doctors said that she's recovering slower than they expected (they did tell us it could take months),

My dad (they r divorced) is talking as if she's dying, and my supervisor at work asked if she has brain damage..

My brain is kinda dissociating and I felt mostly numb or stressed but now I'm starting to genuinely get scared again that she might die or have severe brain damage and I'll have to move back in with her to become a full caretaker... Any comfort or reality check is welcome thanks:')

Everyday after a stroke when I get up I feel like I have left with no energy to get up. I struggle with myself to get up and follow my morning routine at a pace one eighth the pace I used to have. But slowly I pick up and in the afternoon I am getting it to one fourth but evenings feel better with half the pace rest you all know. What about you all? How do you coop?

Hey Reddit, my best friend had a stroke and a seizure late last week and I'm going to see him tomorrow, he's bounced back well off drips and had a clot buster and is aware of his environment now, what sort of things could I bring him to make his time easier while he continues to recover at the hospital?

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!

So, almost a week ago, I posted on this sub that my mom had experienced right sided tingling/burning.

My mom had a minor ischemic stroke 2 months ago that affected her left side.

The neurologist on call in the ER said that this may or may not be a TIA. We did a lot of tests, including an MRI, CTA, holter monitor, and EEG, and all came out normal. However, that doctor still suggested that we start dual antiplatelet therapy for 3 months.

Three months seemed like a long time to me, considering the bleeding risk, so we went to our primary neurologist, who was the one who treated my mom during her first stroke. According to him, it was just anxiety and not a TIA, so she should just continue taking aspirin only.

I’m so conflicted right now. I don’t understand which doctor I should follow.

I was hoping that someone who has been in similar situation could provide me with some advice.

Just over 5 weeks post large hemorrhagic stroke my father in law has started to mouth words and is now able to whisper the answer to questions. Even the ability to answer very quietly with some effort has been amazing for us all to see (we've missed speaking with him more than anything else).

My mother-in-law and wife have been taking photos into the hospital and asking him to whisper who is in then and what they're doing, he's managing to do well with names to faces and can explain what's going on in the photos "at the beach" etc...

He's waiting for a place at a rehab centre but it feels like the hospital S&L team aren't really doing enough with him.

Is this the start of his speech coming back properly? will it just get stronger as the weeks ago on?

secondly is there anything we can do to help him regain good speech (we're at the hospital every day)

Thanks in advance :)

Hi all, I just wanted to share some wins my Dad has had over the last few weeks & maybe get some advice. Five weeks ago my Dad, aged 55, had an Ischaemic stroke in the right side of his brain. This then turned into 3 strokes after the narrowing in his right carotid artery caused repeated clots despite undergoing two clot retrieval procedures. All up he’s had stroke established in approx 1/3 of the right hemisphere of his brain, predominantly in the frontal and parietal lobes, but swelling and minor bleeding from the second clot retrieval procedure caused some lesser damage in the cerebellum as well.

From what we’ve been able to observe so far, the biggest effects have been; loss of voluntary movement & sensation on the left side, left neglect, severe fatigue, potential short term memory deficits, executive functioning or task initiation challenges, temperature regulation issues, and impacted swallow. However, his long term memories, overall demeanour, and humour seem unaffected. After 2 weeks in ICU & 3 in the stroke ward, he has officially been transferred to impatient rehab this week. I know he has a long journey ahead of him so I wanted to start documenting some wins he’s had to serve as motivation in the coming months <3

In the beginning he had no sensation or movement on the left, was nil by mouth, unable to stay awake for more than an hour or balance himself, and barely spoke or engaged with company. Now, in week five of recovery, he has been on solid foods for a week, is initiating conversation and making jokes, is able to self correct his balance when sitting, can perceive sensation more regularly on the left leg, stays awake for hours at a time, and has been able to stand with PT support a few times.

Additionally, a week ago he told me that he thought he could kind of feel his left arm—at least around the shoulder, so I bought a sensory brush to try and use to help him wake up the nerves in his left side. For the last three days I’ve been spending a bit of time brushing over his arm and leg before doing some passive range of motion exercises & targeted sensory activities to hopefully help him map out different sensations (basically squeezing/ rubbing one finger at a time & having him focus on the difference in sensory input of each specific feeling). Its really helped with his spasticity and he’s actually started to correctly identify sensations in specific locations on his leg since we started. But most excitingly—he was able to voluntarily move his left leg for the first time last night after doing this exercise. It was a slight movement but he was able to bend/turn his left leg inward toward the right a few times which is the most control he’s had since the stroke. Then today he told us that his arm feels like part of his body again and not just a phantom limb. I don’t know if these milestones are related to the work we’ve been doing but I’d love to hear your experiences with similar activities or suggestions for other things we could try whilst he’s in bed.

Lastly, what’s arguably one of the most important milestones so far… he laughed for the first time post stroke yesterday. What was so funny, you ask? Whilst attempting to avoid his physio exercises, I told him ‘shutting your eyes won’t actually make me disappear’ to which he insisted ‘it would in his version of reality’ which I replied to with ‘that is the logic of a dog’ which was apparently utterly hilarious to his very German sense of humour.

Thanks for sticking around, much love & well wishes 🙏🏼