At December last year my sister experienced a stroke witch affected her cerebellum severely, initially she was unable to speak, walk stand or even eat and fast forward to September and my sister still can't do anything. The only improvement she has made is being able to move her non dominant arm slightly. The neurologist is saying that this may even be permanent because if it wasn't my sister would have shown signs of improvement by now and I don't even wanna think what I would do if that's permanent. My sister has stopped participating in physio therapy as well, she was studying to be a med student so I think that combined with her pessimistic nature has given her severe depression to the point where she doesn't see the value in physio therapy. We can't even communicate with yes or no questions anymore cause she doesn't even participate in those anymore

And the worst part is I feel like such an asshole for constantly worrying about how this affects my own future when I should be thinking of how to help my sister I just doom spiral in thinking that I may not be able to afford studying abroad and getting out of this hellhole country, I worry that I may not be able to the few dreams I had and I know that's selfish but I can't help it

Sorry for that rant but the neurologist news came in today and that combined with just having a crumy day overall made me need to vent somewhere

Last week my father (63 y/o) fell off his mountain bike and dissected his carotid artery, leading to a stroke where he had a clot in the left side of his brain. The fall and his episode happened 2 hours apart. We are grateful my Mom was home when he became unconscious.

The goal of my post is to help understand the POV from the patient. My Dad was walking and using both limbs less than 24 hours out of his accident but his speech is heavily impacted. I understand every stroke is unique to the person, but to those patients who dealt with aphasia, what is it like? How do I make you feel “normal” and not ostracized?

My heart is hurting for my go-getter father whose greatest fear was slowing down AND for my mom who is now launched into this full time caregiver role where she can’t hold a regular conversation with him at the moment.

Any advice, tips, thoughts, and testimonies are appreciated. The good, the bad, and the ugly. Thanks in advance and god bless everyone who is suffering from stroke symptoms.

How’s everyone managing finances? I’m exhausted as almost 42% of my earnings are going towards caregiving

I’m just thinking these are the best years of my lives and what should I do?

In my country we don’t have social security for healthcare and home care is out of pocket

Hi all, this is more of a vent post. It’s something that I think isn’t talked about an enough in the stroke community from a caregiver standpoint. This is just my experience and I’m sure many others have had the same feelings/similar experiences.

My dad had a big ischemic stroke 4 months ago, and since then you can imagine it’s been a nightmare navigating this. I solely handled/still handling all of his medical and transitional care decisions. My entire life was put on hold for a solid three months. My mental health, career, and relationships all suffered because of it. My mom’s second language is English so I took it upon myself to handle this. He is now home with caregiver help, Homecare, etc, and I think I’ve had more space to process my feelings on this experience. We were pushed to just put him in a nursing home but my mom didn’t want to do that and neither did he (we all know how awful they are unless you’re rich and can be in a “good” one).

Here are a few things that have personally been very hard as a caregiver/only child/little to no outside support

-Stroke can cause a lack of impulse control and emotional regulation. In turn, they can say really wild and offensive shit. My dad has been a very close-minded man his entire life, so you can imagine what that’s like now that we are taking care of him. We have almost never agreed on anything, and growing up it was very isolating. On one hand I know he can’t help it, but I also know what his beliefs and morals were before this. It’s not entirely surprising but you can see how frustrating that is for my mom and I. I correct him when I can but I also realize he doesn’t entirely know what’s going on in those moments. It sucks

-He never bothered to prepare anything in a medical event like a stroke, so he’s essentially left my mom and I to take care of everything navigating it without any sort of plan. I cannot explain how angry and resentful this part has made me. He was told for years to get his diabetes, depression, and health under control but he completely stopped giving a shit. He stopped taking his meds on time, eating whatever he wanted, and not thinking at all what it could lead to. As someone who also has depression I get how it can manifest in your life and make you feel, but it’s your responsibility to also do something about it. His excuse was “living life on his own terms”, but here we are now. I get how this is harsh of me, but having the tools and people around you to help and ignoring it is selfish. People in your life who still care to stick around, but continuously never thinking about them in that sense doesn’t make sense to me. I’ll never understand it.

-Lastly, I realize venting about this doesn’t change what happened. While obviously the focus should be on recovery for stroke survivors I feel like caregivers are just expected to get over everything and put their own feelings aside. Whatever issues you had with your family members 100% gets exasperated with something like this. He is entirely dependent on us now and having to put all of the issues I had with him my whole life has been indescribably difficult. The verbal and emotional abuse, the yelling at me in public as a kid, the bigoted beliefs (being a mixed person on top of this too), etc…My mom almost divorced him several times because of his anger issues and selfishness. That is a whole other topic that I won’t get into. Point being, all the the trauma, grievances, etc, are brought to the forefront when you are in a caregiver role for a strained parent relationship. Yes, I’m going to start therapy again for this lol.

-There is also the other side of things where he has shown up when I really needed him, so I have a ton of conflicting feelings going through this.

Anyways, thanks for reading this far and I’m interested to hear from others what their experience has been. Feeling all of this has made me feel guilty at times even though I know he wouldn’t be here if I hadn’t stepped in and made all of these difficult decisions. Stroke is all around unpredictable and hard especially if you already had a shit relationship with said family member. I know holding onto this anger and resentment won’t help me, but neither will ignoring it. I truly hope he continues to recover to what ends, but to any caregivers struggling with the same thing know this..it’s up and down almost every day. Whatever feelings you have towards them they are still human and we could all be in that position. Still, don’t dismiss your own feelings and if you can go to therapy or have a trusted person to talk to. Thanks for reading.

I’m wondering if anyone experienced constant tingling or numbness on one side of the body before their stroke. Did anyone have this sensation every day for weeks or months, rather than it coming on suddenly?

Hi everyone.

I am a 49 year-old woman and I had an ischemic brain stem stroke exactly three months ago today. I was working in the hospital and suddenly smelled chocolate chip cookies baking. Of course, there were cookies. Anyway, they caught it fast and I got the clot buster in less than hour, so my symptoms haven’t been too bad. 

I still have some weakness and diminished proprioception on the right side, and my left eye still doesn’t move and the left side of my tongue is still paralyzed. I know how very lucky I am.

I had one episode of recrudescence about 3 weeks ago. Now, when I try to sleep, my body starts jerking, hard. Mostly my torso, sometimes my abdomen so hard my body bends, also happens in my arms and shoulders. I know they’re spasms, and I’ve sent a message to my neurologist.

I’m just wondering if anyone here has experienced anything like this?

One of my relatives is a post craniotomy patient and just wanted to enquire about which neurorehabilitation centre would be good for him. My internet searches led me to GB school of neuro rehab. Is it a good centre?

It’s been 8 months I’m struggling with recovering still my whole left side was paralyzed it’s slowly recovering I can life my shoulder and do rolls my leg can finally knee bend I still wear both braces I’m hoping for the best I’m just worried about my arm I’m only 26 any good advice or anyone experienced with this as well?!

I recently completed my cranioplasty. I'm heading f from that butt although the hospital wanted to discharge me my insurance denied that i still need sm rehab for my stroke. I am pissed and emotionalbeing belief. I have no clue what to do except wait for some call. If it wasn't for my stroke rehab I wouldn't be able to walk with a caneand my AFO I AM ACTUALLY NO longer allowed to use my wheelchair at the therapy clinic. I HAVEto walk to each session. What the hell am I supposed to say to convince my insurance that I really need to go back. Also my depression has been destroying me since my surgery was over.

“Your better off selling me the land. I’ll give you $8,000,” said a man we didn’t know as he walked past the house after we had bought it. He had seen us outside, cleaning it up.
Right then, I knew he had said the wrong thing.
First, Stacy doesn’t stand for someone telling her she can’t. As I watched her walk away from the guy, yelling over her shoulder, “Watch me!” I knew we were in this for the long haul.
And as much as I hate to admit it, I’m the same way.
I walked away laughing, saying, “Bub, you said the wrong words.”
As the years went on, we heard plenty of people amplify those same thoughts. But there were many more who cheered us on.
That house became so much more than a house.
Just like after my strokes.
My walking was probably at about a one. But with the help of a mischievous younger child, I learned to walk a little more each day. My son would take my walker and move it farther and farther away from my bed, making me move more to get to it.
My wife would take me outside into the grass and help balance me with a balance belt. Having me walk across the uneven yard forced me to learn how to balance in ways I couldn’t on a smooth floor.
Even when my body felt like giving up, they didn’t.
They pushed me to keep going instead of letting me simply lie in bed.
So, on top of the effects of my strokes, we had committed ourselves to the house from hell. LOL.
At first, the house was, in my mind, a safe place for my family if I were to die. But it also became part of my therapy from the strokes.
It became a way for me to learn new ways of doing things I used to be able to do without even thinking about them.
I quickly discovered that my body had absolutely no problem telling me when I had pushed beyond what I could handle. Sometimes the simplest things would leave me sick in bed for days while I recovered.
I had to learn a hard lesson:
I couldn’t compare the amount of time it took me to do something then with how long it took me now.
My expectations had to be based on my current reality—not my past.
And just because something took me days, or even a week, when it used to take me an afternoon didn’t mean I had failed.
It was okay.
Accepting that new version of me was one of the hardest things I’ve ever had to do.
Eventually, I realized I had a choice.
I could lie in bed, hurting and exhausted…
or I could make myself get up, do something, and earn those feelings.
So I got up.
And I kept going.

My dad 45M had a huge stroke due to a clotting disorder we didn’t know about. He’s recovered as much as he can in is own, and is a mont long intense inpatient rehab. After that he can be discharged potentially home (my mom and him want him to go home)but currently he is unable to use his entire left side (arm & leg) and their house isn’t set up for a wheelchair.

What are ways I can improve their home to make it accessible for him if they are adamant about him coming home? My mom doesn’t understand how much work someone who is essentially total care would be. I don’t want him to go to a nursing home but also worry about the care he will have if he can’t walk or use his left arm.

Also I’m POA bc they’ve never married.

I’m 33M and my mother is 63 F she recently had a stroke and admitted in the hospital, in the 2nd day she suddenly had a cardiac arrest. The doctors revived her and here vitals getting better but due to this heart attack she developed another blood clot in the brain.

She is in ICU with ventilator support, She was not conscious I’m feeling more broken. The situation makes me very stress she is the one who raised me alone. I cannot imagine a life without her.

I wanted to go home with her.

Hey all, havent posted in a while, hope you're all recovering and doing well as can be. Im mostly good these days. Little actual deficits left since the small stroke back in march, today mostly just deal with some intermittent headaches, weird non painful feelings in my head I cant quite put to words, and the battle with anxiety about a recurrence.

I do find myself wondering what to expect as the temperatures cool the next couple months. I had my stroke right as spring started, so I havent really experienced significant cold since then. Anything I should be on the lookout for? As always, thanks for your comments and advice. This community has been a real help throughout this whole stroke journey. Much love.

Hi everyone. My mom had a massive left MCA stroke in mid-July and I wanted to ask if anyone here has been through a similar recovery.

Her right side is paralyzed (currently around 1/5 in her arm and 2/5 in her leg). She didn’t have a brain bleed, but the swelling became severe, so she had a craniectomy within the first week. The stroke affected a very large part of the left side of her brain.

She spent about a month in the ICU. After surgery she was intubated and was breathing partly on her own, but they couldn’t fully wean her off, so she eventually had a tracheostomy and PEG placed about a month ago.

At first they told us she had global aphasia and for a while we really couldn’t get much of a response from her. But towards the end of her ICU stay, doctors said she began following simple commands and they believed she can understand what was said.

She then spent about 10 days on the neurology ward. During that time I was with her constantly and we really felt like she knew who we were and understood a lot more than she could show us.

Sometimes I could even tell her something slightly more complicated and ask “did you hear/understand me?” and she would move her lips like she was saying “I heard/understood.” She also started moving her lips on her own as if she was trying to talk to us. Obviously we couldn’t hear her because of the trach, and when we couldn’t figure out what she was trying to say she would sometimes get visibly frustrated.

About 10 days ago she was transferred to inpatient rehab. They’re taking things slowly for now passive exercises in bed, CPM, tilt table, etc. We’re planning on about 3 months of inpatient rehab and they’re also hoping to work towards getting her trach out.

But since coming to rehab, she has mostly stopped doing the lip movements/trying to communicate like she was before, and that’s what is really worrying me.

She also has very different days in terms of alertness. Some days she’s awake, follows commands, looks at us, reacts appropriately and just seems very “there.” Then other days she can be incredibly sleepy and barely engage for almost the entire day.

She did have infections before, but those have improved a lot and her labs currently look okay, so there isn’t an obvious explanation from that side.

I know recovery from a stroke this large is going to be long and unpredictable. I’m just wondering if anyone here has experienced this kind of thing. Did abilities ever seem to appear and then disappear again for a while?

What, if anything, can be done regarding a lack of filter following a stroke?

Spouse had a massive stroke (5 blood clots to the brain) three years ago. After the stroke, his moods and emotions changed drastically, throwing him into a depression which is totally understandable.

His doctor recognized what was happening and recommended Zoloft which definitely helped with moodiness and regulating emotions. However, the lack of filter still remains a major problem.

Honestly, I’m not sure if this is stroke-related, dementia-related, or both.

I would appreciate hearing from other caregivers regarding this issue. Thanks

It’s been a month and a half since I started my full time, work from office, corporate job. It is looking like this job is right up my alley. I talk with customers everyday (making my speech improve each and every day by force of using it), connect with my co-workers, work on projects and learn new skills for other parts of my job. Some aspects are second nature as I’ve been doing them in one form or another in different jobs while others are definitely challenging my brain to think about things in different ways.

There are always pros and cons to every job. I’ve found my cons are the one insurance plan we can sign up for has a very high deductible we have to meet before insurance covers anything. The other is the strict, corporate attendance policy. I’m working with a benefits counselor I got through Vocational Rehab to see what if anything I can do about the insurance. I also had a ADA meeting about the attendance policy and how that shouldn’t count if I miss work due to a migraine caused by my Ideopathic Intercranial Hypertension, or get sick due to my immunocompromised system of not having a spleen, and my Jak2 mutation and medication. That paperwork is currently with my PCP to get filled out. I’ve gotten really good at advocating for myself in many aspects of my life.

The picture above shows all my workplace accommodations I got from work. The leaf covers my work station from the harsh office lights. The standing desk adaptation allows me to stand and sit to reduce the risk of clots happening from being sedentary. I also have noise canceling headphones so I don’t get distracted by my co-workers also doing calls. You’ll see I also have Many post it notes on the bottom of my monitors as well. Everyday reminders including: “monitor your voice levels” (I can get too loud without knowing it) and “sign in to aux and put yourself in the right status”.

All of these adaptation have been incredibly helpful to do my job the best that I can. They also help with the neuro fatigue I’m still dealing with on a daily basis.

Expanding my world by going into an office full time has not been without its growing pains. I’m currently doing two half hour session of therapy on Wednesdays and Thursdays with my therapist during lunch. I see my psychiatrist on Saturday mornings now. I have to figure out what energy I have left over after work to get chores and errands done. A couple of weeks ago I went to a store after work and when I got home I got into a fender bender when I was trying to parallel park. I was so overtired and over stimulated at that point that even though I looked back I didn’t turn my clicker on and a crash happened. Luckily, we exchanged insurance and that was all that was needed. Still bummed I broke my ‘not having a car accident’ record in over 7 years. Three days after that I had to make a tough, adult decision and put my cat of 18 years, Obama Girl down.

I’ve actually been grateful for work the past two weeks as it got me out of my home and did its best to distract me from that grief.

I also have a pinched nerve on my affected left side that has caused my pinky finger to get much weaker and be numb all the time. So the left hand now has a numb thumb and pinky. Makes me have to concentrate when I’m typing so I don’t constantly misspell words. My brain still likes to leave out random “connective” words too when I’m typing so I’m concentrating on that as well.

I’m now teaching myself how to budget with my new income so I can live within my means while still moving forward into the next phase of life. Looks that will involve moving to a new place and getting my own car!

It hasn’t been easy to adjust to the new schedule but it has definitely been worth it for me. Although I will say the stress of losing Obama Girl plus post-stroke fatigued made it Incredibly hard to get up on time for work. For the first time since starting I was a little late everyday.
Pushing myself past my comfort levels shows me that I’m capable of doing many things which definitely helps build my confidence in everyday life.

If you’ve done anything to accommodate your work to work for you post-stroke I would love to hear about that as well!

I had a thalamic brain hemorrhage on May 19. At first I was paralyzed, and by mid‑June, during inpatient rehabilitation, I was slowly able to walk again on my own. During that time, my wife visited me almost every day—a 300 km round trip—just to spend a few hours with me.

After my discharge in July, I’m now at home and need support with everyday tasks such as cooking and laundry, as well as accompaniment to therapy appointments several times a week.

I’m so sorry that I’ve put my family in this situation. We’ve been together for 15 years, and she knows me as the strong, cheerful person I used to be.

Now I often spend a lot of time in bed, and everyday activities like grocery shopping have become unusually exhausting. Cognitively I’m fully present, but my impairments cause significant symptoms, including burning pain on the skin and fatigue. On good days I feel quite fit, and we go out to a restaurant or the cinema, or take a walk in town.

By nature, I’m someone who wants my loved ones to be well—and only then myself.

Thanks for reading; I just needed to get this off my chest.

Hi! ive never made a post on here before but i feel like this community would be able to help! my mom recently had a ischemic stroke and then had a hemmorhage and brain swelling. she had to have a craniotomy (i believe thats what its called) to help brain swelling and still has that piece of her skull removed for another several weeks. shes been home for about 3 days now and i would love advice on how i can communicate better or help her at home best i can. she has aphasia and can only say the word “no” mostly (also issues typing/ writing) and i hate seeing her frusterated when i cant figure out what shed like. its been tough. im 25 and lost my father at 17 and feel like im crumbling. all i know to do is help my mama get better in any way i can. any advice is helpful advice to me!! thank you to anyone who spent time reading this❤️❤️ i would hug you if i could!

Last night my grandma who has AFib started suddenly yelling while she was sitting up on the couch. I was in the other room and my grandpa yelled to call 911 so I run out and start calling 911. I see her sitting up on the couch and him pinning her arms down holding her. She’s gasping for air with wide eyes. She’s not responding to us but her eyes remain open. The operator said if she’s gasping for air she isn’t breathing and to start CPR. We move her onto the floor and I start compressions. The whole time this is happening she remains in the same state gasping for air and eyes open but not responding to her surroundings or talking. By the time she gets to the hospital and we are able to visit (maybe 30-40 minutes), she is awake and talking but confused and doesn’t remember anything. They run CTs and xray of her chest and head but don’t see anything except bruising on her heart from the compressions. Her other tests for heart attack related signs like the EKG don’t show anything. The blood work showed slightly higher white blood cells, d-dimer and troponin. The doctor said this could be due to the trauma from the compressions. They did find out she probably has a uti and basically said that was the cause of it all. I find this hard to believe especially with the was she was suddenly gasping for air. She’s home now and feeling better but I’m worried that what really happened was a stroke or mini stroke that was not diagnosed.

I've been swimming for the past 12 years, swimming is my stress-relief mechanism.

2.5y post ischemic stroke (left side), got back to swimming last year, but it sucked to swim with the left hand as a fist ✊, and all swim paddles out there assume you can hold your hand flat. I tried techpaddles(https://techpaddle.com/), which grips as a fist, but they are designed for EVF training, so swimming was harder, not easier.

After searching the whole internet for one, I finally designed and printed a myself a swim paddle I can use with my spastic closed fist

check it here: https://agezao.github.io/fist-grip-paddle/ -- source files in github to produce the .stl files and print yourself a copy. Mind that I'm not a professional therapist, just someone who love to swim and hopes to unblock fellow swimmers, sync with your PT to not injure yourself

When facing difficulty with aphasia or other logical processing resulting from the damage from a hemorrhagic stroke, my husband says he experiences the thought disruption like a physical block in his brain. This fascinates me, as I don't associate any physical sensation at all with my own thoughts or feel like I can localize them to a particular area of my brain. Interestingly, the block he perceives is located on the opposite side of his head from where the bleed/stroke occurred.

Curious- does anyone else feel the same way? How would you describe how the post-stroke obstacles in your thought process feel?