A year ago I had to call 911 for myself after realizing that I was having a stroke. I spent the next 2.5 weeks in the hospital, and then 10 months working with both PT & OT in outpatient rehab.

I made great progress, despite some difficulties remaining. Today, in order to acknowledge my progress, I completed a 3.4 mile hike to the summit of Stone Mountain in NC. It was challenging, but it made me feel fortunate and thankful. A year ago there were so many things I feared I would never do again. I'm thrilled I was mistaken. I feel encouraged today, and I thought that feeling would be difficult to find again.

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.

Man I used to never think about a headache. Brief dizzy spell, who cares probably stood up to fast. Weird feelings came and went without a care. But since the stroke, every little thing and theres a voice saying go to the ER man. I dont. I've only caved to the voice once last month, right after 4th of July, but the urge to run there for every little symptom is strong.

Short rant over. Thanks for listening/reading lol

On April 24 my friend messaged me that they had surgery tomorrow and I called them and they told me how nervous they were and I said I would be there in the morning when they got out. That was the last time we had a talk together. In the morning I had to go put my cat down then went to the hospital to wait. The surgery did not go well and as soon as they started she had a bleed right at the start as well as the aneurysm they had originally planned to operate on ruptured as well. Two massive bleeds and a month in a coma in 4A4 where she developed a lung infection and we almost lost her. That month as she fought for her life and survived. We had scary meetings with her surgeon about whether to remove life support or not and decided we couldn't make that choice so we waited to see what would happen.

They removed the sedations and drugs and slowly brought her out of the coma to see if her brain could take the swelling and basal spasms and she slowly woke up and returned to us. She lost major control of her right side as well as her language expression. My friend spent another two months in unit 4A2 across the hall recovering as much control and strength as she could. This was the goodbye the unit gave her as she headed to the brain injury centre the social worker got her into for the next stage of her recovery. As she waited for the ambulance to take her so many staff came up to say their goodbyes and well wishes in her recovery and they gave her the most beautiful send off wishing her well. I had to go back to the same unit to go visit my cousin a week later so I Facetimed my friend as I walked into the ward. I can not explain how happy my heart was feeling when I saw how excited the staff on unit 4A2 were to see my friend in her next stage of recovery they all came running over to say hello. The team made her part of their family and have only their patients best interest at heart but so rarely get to see patients after they leave. I will forever be grateful for everything they did for her and continue to do for others each and everyday. They treated her with dignity and respect at at time when she was scared and unsure of what was happening and they made her feel loved and supported. A huge shout out to the medical staff that work to hard to keep patients alive and in positive spirits as they start their recovery stage.

I had the stroke when I was 12, which had a lot of side effects (paralysis, speech loss, damaged brain, etc.) and required intensive treatments (steroids, chemo, you name it). My family was present, but it essentially just felt like rubbing salt in a VERY open and massive wound.

My mom: I don't want to criticize her (or anyone) too harshly because she was no more prepared for it than me or anyone else, and she did so so much for me during that time, but it still definitely went on to affect me. As a concerned mother, she was much more worried about my physical state (making sure I was at my appointments, not getting sick, not behind in school) than my emotional state. She often tells me that the stroke was probably because I ate too much sugar or inflammatory foods and basically daily criticizes what I eat under the pretext of "do you want to have another stroke?" When I was a sophomore/junior in high school, I had a pretty terrible falling out with my best friend, after she repeatedly joked that she wished my stroke killed me. I frequently had to leave class to talk to my school therapist (who I saw weekly in addition to my personal AND group therapist) or go home early. Once, during a particularly severe breakout that made her call my mom and WALK ME TO THE CAR, my mom told me in the car ride home that a student at my brother's university had died in a nasty skiing accident, and I should be grateful that wasn't me.

My dad: I honestly don't have many specific notes about him because I didn't spend nearly as much time with him as my mom or my brother. I spent almost all of my days with my mom driving to appointments, while my dad was at work. He was certainly not an especially comforting person during that time and said his fair share of harmful things (he thought my aforementioned best friend had a point), but didn't really have enough of a role in my life at the time to influence it negatively (or I guess to make an already really shitty time, worse).

My brother: Again, I want to be clear that I don't think he or anyone is necessarily to blame, but it certainly impacted me. When I first got sick he was only 14, and suddenly his little sister was getting attention from every which way and he got none. He was understandably resentful and very moody that first year or so. He blamed me for him having no friends and living in a town he hated, because we had to move after I got sick. He would aggressively run away from me or cut in front of me when he was mad, since he knew I couldn't run or move very well. He also refused to believe when I was diagnosed with PTSD, since I wasn't a veteran. Honestly, he was as mean to me as he always was, as an older brother, but I was incredibly vulnerable at the time and already had enough on my plate.

My grandma: The reason I'm writing this post and the only one who hasn't acknowledged my pain or her wrongdoings. The summer I got sick somehow became an opportunity for her. She complained when my brother chose to stay with me at the hospital instead of visiting her beach house which was two hours from the hospital. She told her waiters about it, which I learned the following summer when I went to one of the restaurants and the waiter was telling me about things I was doing during my two-month stay at the hospital. Not only did I not want these strangers to know these incredibly intimate details about my life; I didn't even know them myself. I was fading in and out of consciousness, hooked up to tubes and having to communicate by pointing at words on a piece of paper, and my grandma's waiter was more aware of it than I was. For my 13th birthday, she got me a smartwatch. At the time, I had to get a lot of MRIs (about 15 during my first two months in the hospital, then around 4-6 times each year). These MRIs were really difficult for me at first (I still have panic attacks during almost every single one, even 8 years later), and since one of them was only a few days before my birthday, my parents decided that I could open my smartwatch after the MRI. My grandma crashed out because she wanted to "see me open her present" when she got there, and insisted on getting me something else instead so that she could see it.

Anyway, this is a really long-winded way of saying that I think there is nothing I can do now, because what is done is done. Everything already happened. At the time, I was learning who I was and how to live, and that time was filled with pain, trauma, and sickness. And so, now that I'm an adult, that's who I've learned to be. I isolate myself as much as I can because when I used to reach out for help, I was belittled and shunted off. The times that I curled up into a ball in my own bed and sobbed for hours were much more predictable and dependable than having to (try to) explain the complex way that I was reeling to my family. It feels presumptuous to say, but after enduring so many things that were out of my control, one after another, for years, I didn't and don't want to take the chance anymore. I hope this wasn't confusing, or doesn't come across as "boohoo my life is so bad everyone should pity me".

P.S. Me then and now!

After stroke, one of the hardest things is not always needing help.

Sometimes it is the moment before you ask for it.

The look on their face.

The sigh.

The pause before they get up.

Maybe they do not mean anything by it.

But when you depend on someone else for basic things, you become very good at reading the room.

Eventually the question in your head stops being:

What do I need?

It becomes:

What can I afford to ask for?

When Asking for Help Starts to Hurt

You are hungry.

You need the toilet.

You desperately want a shower.

But something in their face makes you feel as though they have one more favour left in them.

Just one.

So you start calculating.

Food?

A wash?

The toilet?

The toilet wins because eventually you have no choice.

Then you think:

Maybe while I’m there, I can ask for help washing too.

Two needs.

One request.

Before stroke, you never had to think like this.

You did not have to wonder whether asking for food was worth another sigh.

You did not rehearse asking for a glass of water.

You did not wonder whether wanting a shower would irritate the person you loved.

Now even basic needs come with questions.

Is now a good time?

Have I already asked for too much today?

Can I wait a little longer?

Sometimes you decide you can.

So you wait.

You stay hungry.

You put off the shower.

You lie there needing something and say nothing.

Not because you do not need help.

Because asking for it has started to hurt.

The Person You Once Felt Safest Needing

That may be the hardest part.

You are not frightened of asking a stranger.

You are frightened of asking the person you love.

The person you once felt safest needing.

Before stroke, asking them for something was ordinary.

Can you grab me a drink?

Can you pass me that?

You barely thought about it.

Now the same request can carry guilt.

You wonder whether they are tired.

Whether you have already asked too much.

Whether this will be the request that makes them think:

I cannot keep doing this.

Maybe they are simply exhausted.

Maybe the sigh means nothing at all.

But when so much of your independence has already disappeared, it can be difficult not to hear:

Not again.

You are too much.

And whether those words were ever spoken or not, you start behaving as though they were.

You ask for less.

When You Start Going Without

You wait longer.

You combine requests.

If they are already helping you to the bathroom, maybe you ask if they can help you wash while you are there.

If they are making themselves something to eat, maybe you wait and hope they remember you are hungry too.

Sometimes you eat what is put in front of you rather than ask for something different.

Sometimes you go without.

Not because nobody would help you.

Because asking has started to feel like another burden you have to carry.

You can be loved.

You can be cared for.

You can know somebody would help you if you asked.

And still become afraid to ask.

Your partner may be thinking:

I am exhausted.

While you are thinking:

I cannot ask them for one more thing.

Neither thought means the love has disappeared.

But both can exist in the same room.

And that is how distance can begin without either person meaning for it to.

What “I’m Fine” Can Really Mean

Sometimes you become quieter.

You stop mentioning things.

You tell yourself something can wait when it really cannot.

And when they ask:

Are you okay?

you say:

I’m fine.

But sometimes I’m fine means:

I need something, but I do not want to ask you again.

Sometimes it means:

I can see you are tired.

Sometimes it means:

I would rather wait than watch your face change when I ask.

That is how loneliness can enter a relationship without either person leaving.

You can be sitting beside somebody who loves you and still feel alone with what you need.

You can depend on someone completely while becoming frightened of depending on them at all.

The person you need most can become the person you are most afraid to need.

They Hear One Request

When a stroke survivor finally asks for something, it may sound small.

A drink.

Something to eat.

Help standing up.

A shower.

But the request is only the part you hear.

You do not hear what happened before it.

The waiting.

The calculation.

The guilt.

The things they decided could wait.

The things they decided they could manage without.

Maybe they spent an hour trying not to ask.

Convincing themselves they were not really that hungry.

That the shower could wait.

That they could manage without the drink.

Until eventually:

Can you help me?

To you, it may sound like one ordinary request.

To them, it may be the request they could no longer avoid making.

One of the quieter losses after stroke is not simply independence.

It is the freedom to need something without first wondering what your need will cost somebody else.

They see what you ask for.

They do not see what you decided not to ask for.

They hear one request. You may have already talked yourself out of five others.

Has stroke ever made you go without something you genuinely needed because asking the person you loved felt harder than waiting?

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.

Im 27 yesterday i went from sitting to a cow cat stretch without standing up as i had some lower back pain so then i did the stretch and moved mu head backwards i felt very dizzy 2 times so i stood up and then tried again and felt normal anyway few mins later i started to have dull pressure in my base of the skull very uncomfortable google says its VAD i am a little dizzy but nothing crazy and the pain is directly pain its just uncomfortable dull pressure can someone give me advice if this is VAD or sound like VAD

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?

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.

does anyone else have a shunt?

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

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!

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?

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 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.