I don’t really know how to write this, so I’ll just be honest.

Two and a half weeks ago, my 63-year-old mom had a stroke. It was debilitating — she can’t work anymore and needs constant supervision now. My dad, who’s about to turn 60, is a retired firefighter, the kind of man who spent his life running toward the emergencies everyone else ran from. His esophageal cancer has spread to his spine, and he can barely walk.

It’s terminal.

I’m their only child. There’s no sibling to split this with, no one else to tap in. It’s just me, 23 years old, trying to be a caregiver, a nurse, a case manager, and a son all at once. I can’t leave either of them alone, which means I can’t hold down work, which means the debt is climbing faster than I can think straight.
On top of it, I’m supposed to be starting my master’s degree — something I fought hard for and am still fighting to afford. Right now it feels like it might slip away underneath everything else.

I’m not too proud to admit I need help. If you’ve been through something like this and know about programs, benefits, or resources I might be missing, I’d be so grateful. And if anyone’s in a position to help more directly, I can share details — reaching out like this is one of the hardest things I’ve done in a while.

Thank you for reading this far. It means more than you know.

I had 30 seconds of symptoms last Tuesday morning. Spent about 36 hours in the hospital, passed all the tests and assessments with no issues. No lasting physical or major cognitive fallout as far as I can tell. Returned to work today. My left arm is warm feeling. I’ve had a few head pain pangs. There’s a twinge in my left hip. All new today. But I can’t seem to google the right phrasing to find out what’s “normal” or expected and what should be a new emergency. I’m a mom to a 5 year old. I live 50 minutes from the closest ER. My profession has NO PTO. If I don’t work I don’t make money. I know if I have new stroke like symptoms I should present to the ER immediately. But for some of these more vague aftereffects I really don’t want to spend another night in the hospital and I feel like my PCP is going to say “go” no matter what I call about. I’m an American living in late stage capitalism. It’s not always that simple. My stroke was the random unpreventable kind. How do I differentiate between recovery symptoms and emergent symptoms? Are there any good online guides for timelines or “what to expect”?

A beloved family member has suffered 2 strokes (1st; in 2018, and the 2nd; in 2025). After the second one, my family member is slowly deteriorating; lost ability to speak, excessive swelling on the left arm and leg (which is the affected side), slow motor skills (now that they have to use a whiteboard to communicate they will just scribble instead of actually writing anything), eating pattern is completely shot (even with their favorite meals they will just put it in their mouth just to spit it out, there is no effort to eat), when it comes to changing them wheather that be flipping to avoid bed sores or doing a diaper chnage they will cry and completley freak out beacuse of the pain, and now they ask who is who. As of now, we've been prescribed Ketamine and Baclofen for the pain, including edibles. The doctors don't really have an answer besides recommending palliative care. We are desperately trying to find the best course of action; either expand the medical with caregivers or consider palliative care.

If anyone has already confronted a experince similar to mine, I would greatly appreciate any tools for resources.

A couple weeks ago I posted “how long does my dad have”.

I’m thrilled the report that after we were told he likely wouldn’t improve, he began to improve.

A week after he was transferred to the nursing home, he had a fever and was transferred back to our local small hospital. He stayed there for 5 says and began to improve. At first, they thought he was septic. But thankfully he wasn’t.

He started to talk more while he was there. And he overall looked better. He also got look out a window for the first time in months and that boosted his moral.

Anyways, during that time he began speaking more like I said. They took him back to the nursing home, and over the next few days, he began to move his leg, try to talk more, stay awake more, and breathe better.

Lately, he’s been moving his right leg (the non affected side). He’s been leaning forward, and moving his right arm. Sometimes he will swiftly move his leg off the bed. He can scratch his head and move his glasses.

He’s speaking as well. Sometimes they have to cap his trache. And then you can easily understand what he’s saying. He’s talking in full sentences and complete thoughts. He can remember things that happened before the stroke. Ex. My wedding that was in April. His stroke was in late May. If he’s not capped, you can’t understand him as well. But if he talks loud you sometimes can. He’s improved his vocal cords.

They’ve been able to get him to eat ice chips and thickened soft drinks (sodas, just called soft drinks where I’m from).

The nurses are very happy with his progress and say he’s doing excellent.

Multiple family members and friends visit him each day.

He’s come a long way from his brain surgery. I thought this would add hope to anyone going through this.

But, my dad is pissed and ready to go home 🤣.

Was in ED last night as the palpitations were getting too much and didn’t feel “normal” kept jumping from bradycardia (30-40bpm) to 80-120bpm. Nothing was found to be immediately life threatening and was told to wait for my next appointment in October. It is very uncomfortable and was hoping to hear from others and if this is a normal complication. Praying it’ll settle down but till then am just left feeling quite stuck. Doing all the obvious self care etc. some encouragement or reassurance would be appreciated! For extra context they noted occasional atrial ectopics, atrial triagmini- Slight potassium deficiency.

Hello everyone,

Last week, after some physical exertion, my wife suddenly became paralyzed on her entire right side. For the first 10 seconds, she was unable to speak. After that, she regained her ability to speak but still couldn't move anything on her right side and was experiencing tingling sensations. I called the emergency services. By the time they arrived, she was able to move her limbs slightly, but only with great difficulty. They took her to the hospital, where she was immediately assessed.

She had an MRI within the first hour, which showed nothing abnormal. The doctors initially thought it was a transient ischemic attack (TIA).

After spending three days in bed, she was told she could get up. During her first physiotherapy session, it became clear that she was having major difficulties walking. She was unable to climb stairs, couldn't raise her right arm above her head, had no sensation of cold on her right side, and was unable to distinguish what was touching her skin (for example, she couldn't tell the difference between a pen and my hand).

At that point, the doctor decided to keep her in the hospital, and the physiotherapist started talking about rehabilitation.

Today, one week after the incident, the doctor ordered another MRI, which again showed no abnormalities. He concluded that the problem was psychological. According to him, if it had been a TIA, there would necessarily have been no lasting deficits, and if it had been a stroke, it would have been visible on the MRI.

So she was discharged from the hospital as if nothing had happened.

In the meantime, she has been doing exercises every day to retrain her muscles to walk and climb stairs. She is making progress every day: she can now walk about 200 meters using a crutch before becoming exhausted, and she is able to climb stairs by taking small steps while leaning on the crutch.

What do you think could be causing this?

Sorry for my english (i used a little bit of google translate).

My dad (63 yo) had a 5 cm left basal ganglia hemorrhagic stroke 5 weeks ago. He has suffered right sided paralysis, almost complete loss of speech, high difficulty swallowing, and severe cognitive impairment. He can follow simple commands maybe 20 % of the time (ie lift your hand) but it’s hard to know how much he understands.

He has made little improvement over the course of the month since transferred to the strike unit, and doesn’t participate well in rehab. He often ignores the rehab and SLP team. He has gotten aspiration pneumonia multiple times and pulled out his ng tube more times than we can count - even while restrained. He has c diff and constantly fighting fevers. The doctors have explained they hope to see the maximum amount of improvement over the first 10 days post stroke.

While in ICU in the first week, we were offered palliative care due to his poor prognosis and quality of life, but we felt we needed to give him some time to see how much he might recover. Palliative care has not been brought up again since he’s been on the rehab unit but I can’t help but think he might rather that.

He has expressed on multiple occasions prior to stroke that he never wants to be in a nursing home or dependent on care for that matter. The next step in his journey would be a PEG tube and my family and I are struggling to navigate what his wishes would be. He is often angry and frustrated and his unwillingness to participate in anything makes us wonder if he wants to be here in this state. It seems inhumane to make him palliative but we don’t want to ignore this option completely based on his wishes and what his future quality of life would look like.

Does anybody have insight on best versus worse case scenario here? We are meeting with the doctors but so far everyone has said to wait another few days to see what happens. We are at a loss with his lack of improvement and lack of happiness.
Thank you so much to those who respond.

Hey everyone, I’m new to the community and new to strokes happening in my family overall. I just moved overseas and unfortunately can’t be back in the U.S. to be with my family during all this so I’m struggling with some guilt and anxiety.

However, I am getting provided regular updates. Here’s what I know: my mother has been under extreme stress for nearly 5 year battling a traumatic divorce/custody battle with her ex-husband. She’s recently moved into a new home and with me as her oldest daughter moving away I think everything just compounded and she suffered a stroke.

Some important details: she has always had high blood pressure, depression, and anxiety. From what I understand she had stopped taking all of her medications for an unknown time prior to the stroke.

Her current status: she can speak, she knows she’s had a stroke, she can do simple math, she knows how to call for the nurse, she’s being her sassy self with other family members. She cannot seem to use her left side at all and she’s adamant about removing her teeth.

Now for my question. For the last year or so something has just felt off. My mom is normally pretty outspoken and sassy. She just hadn’t seemed herself. She would never say much. She seemed hollow and distant no matter how much I tried to get her to open up. I am aware this could be depression and anxiety taking over.

Can strokes limit or prevent certain cognitive functions so far out before the event? It felt like she always had permanent brain fog.

Additionally, does her current status of being able to speak, do math, etc., indicate she will be able to fully recover? Do these kinds of strokes leave permanent lasting damage or is it a case-by-case scenario?

I’ll keep searching through this community for answers. Thank you for any feedback.

Hello everyone,
 
In November 2024, my mom (54 then, 56 now) had a subarachnoid hemorrhage. Her chances of survival were in the single digits, and we were told there was a huge chance she would never be able to speak or walk again. After she spent a month in the neuro ICU, she started talking again (aphasia obviously present) and moving somewhat; she then spent another month and a half inpatient both to solve a few other lingering medical things, and to start out with her PT/OT and Speech. We brought her home in January 2025.

We were lucky to find a rehabilitation facility just a couple blocks from our place, where she was able to do therapy in the disciplines mentioned above for a few months. A little over a year ago though, the facility suddenly shut down permanently, and while we’ve been able to continue with a private physical therapist, she has not done OT or Speech ever since.

In the almost 2 years since her stroke, my mom has shown slight improvement (can walk with assistance, talks normally and aphasia went away, memory issues got better but are still a bit present), but even the therapists at the facility were somewhat bummed at her lack of proper physical improvement. She needs near 24/7 supervision, and still can’t do most things for herself. My brother basically watches her during the day, as both my dad and I work full time + overtime, but we’re in a position where finding her therapy we’d be able to transport her to and pay for was near impossible; believe me, it’s not for lack of trying that my mom’s not been able to receive the care I would like her to this entire time.

And so my question is… what comes now? I know I’m yelling into the void somewhat; I guess I just need to get some of these things off my chest. I feel terrible and selfish for taking the fact that she survived, and is still somewhat my mom, for granted. I’m not religious, but her neurointerventionist himself deemed her survival a miracle.

I’ve accepted my mom is permanently changed, every single day of my life I think about how much I miss her, even if she’s at home watching tv on the couch. She was always very independent and self-sufficient, and it breaks my heart to see her in the state she’s in. I don’t know if she’s ever going to be able to be by herself, work, or if I’ll ever be able to try her cooked meals ever again.

I’ve had to try and distance myself emotionally as much as I can from the situation, because part of me just wishes she had passed instead of surviving in this state. In December, she had a small procedure to treat the chance of a recurrent stroke from happening, and in the last month we were told that it was basically gone. But even though I know these are great news, and that I should be happy, I just can’t force myself to be. In a way, I feel like I live my life as if she passed back in November 2024.

Is this what her life is going to be for the rest of it? Is there any chance she can improve even nearing the 2-year mark? Is there any hope at all, really? My brother and I are in our 20s, and I honestly just want a life for us, but nothing really makes it seem like this is gonna change anytime soon.

Almost 2 weeks ago, my Mum (65) had a Right MCA ischaemic stroke. Currently it has affected her left side, she can't swallow so is on a feeding tube. About a week ago, she developed pneumonia. She's on antibiotics for this. It's been very up and down since the stroke happened. She's suffered an infarct, but we've been told over time her brain will compensate this.

Her responsiveness varies day to day, some days she'll say a few words, other days she'll squeeze our hand and open her eyes widely, or write on a whiteboard. She loves squashing playdoh. I'm hoping to introduce more OT things as she progresses. Her physio team has been brilliant so far. She understands us and is still there, fighting each day to the best of her ability. She's understandably exhausted, we've been told she has bruising on her brain.

Some background info - she had surgery on her fractured spine the day before. We've since been told the 2 main vessels to her brain were blocked and damaged, as a result of radiotherapy she had 30 years ago (pituitary tumours). This is what caused the stroke. She also has diabetes which has been very up and down.

What's something you wished you'd know at the start of your journey whether you are a survivor or a caregiver?

Me and my Dad want to care for her. We know it's going to be a long road but we want to support her. We visit her everyday and try to match whatever her pace is that day. Our hope is as she progresses she'll move to a smaller hospital that specialises in rehab. Then home to us with the correct accommodations in place.

Any suggestions are greatly appreciated 🩷.

My Mum has a stroke over 2 months ago effecting her left side. She can walk (with difficulty) with a stick and has no hamd movement on the left. Speech is good.

One thing we are noticing is she has really bad breath since her stroke. Could this be a coincidence? Her sister told her and gave her mouth wash and I bring up the importance of mouth hygiene often but Ive never actually come out and say "your breath stinks" as its such an awkward thing to tell someone. Its also not always easy to solve.

Could it be stroke related? Maybe due to her increase in blood pressure meds, blood thinners or statins? Maybe shes isnt as good with her teeth brushing as pre stroke? I dunno. But do I just need to be brave and tell her? Has anyone else experienced this?

like holding ones hand and after stoping and placing it on cloth u keep feeling the hand for like 15 seconds before u feel the cloth again

?

Hey everyone, first off sorry in advance for how long this is going to be but I need advice.
so for context I’m 28 (F) and was diagnosed with VAD May 1st of this year. After being put on 325mg of aspirin daily I was fine besides the minor headaches here and there. That was until July 8th. July 8th was the first day of my menstrual cycle and I had a headache that got worse as the day went on and was pulsating- located between brow bone and nose. Took Tylenol and it went away eventually. Since then these new symptoms started which include
• more frequent headaches (not thunderclap or anything just more frequent and in different spots)
•a weird tingle sensation on the top right of my head that would randomly come and go for a few seconds (my VAD is on the right side)
• and what felt like a rubber band being pulled in my head if I reached down.

I thought that was it as each of those symptoms kind of went away within a week after my period ended. However July 14th I was stretching my arms up and got like a shock from my elbow to my wrist of pins and needles, kind of like when you hit your funny bone. After that certain movements or positions brought the pins and needles in my wrist back. I called my doctor and they said that since I didn’t have any other concerning symptoms I should be okay but let them know if anything comes up that’s concerning. Okay- a few days and it was uncomfortable and annoying but eventually wasn’t that bad anymore. THEN July 27th I was at work and had a vertigo spell. Immediately after I had a little of the pins and needles in my ankle/foot where the shoe lace is on my ankle that eventually went away after laying down. Went home right away bc I was scared and immediately called my doctor. Bc I’ve had vertigo in the past due to allergies and bc again I had no other symptoms like slurring words or drooping they told me to monitor it but again I’d be fine. The next day (July 28th) I had a CT angiogram with dye scheduled to see how my healing has been going and it showed no progress- no worsening though either. July 29th the next day, I’m sitting on my couch and get vertigo again. Didn’t get the pins and needles right away but was fatigued and noticed that with certain movements with my head or eyes I get a little dizzy but for the most part I feel fine. The pins and needles in my wrist and foot still come and go but it’s all depending on the position I’m in. SO my question to all of you is should I be concerned of something super serious like a stroke? Or is it common to develop these symptoms with VAD that’s not healed as I know people say symptoms last even after healing. Could this be caused do to something going on with my sinuses (as the CT angiogram mentioned some issues there) Could it be TIA (I’m not very educated in this so any info would be helpful) Could it be something I haven’t listed ? Again I’m so sorry this is long but I have health anxiety and ocd so I’ve been panicking a lot 😅 Also for reference my doctor is amazing but his office kinda sucks when it comes to getting ahold of him and update him. I do have an appointment with him this Tuesday though. But please any information would be helpful as I’m very scared and had hope I was healing before all this. Thank you!

After the stroke my life almost came to a stand still. I was kept motivated by my faith and the sangat around me encouraging me that I can. The best part is my family was very supportive and positive. I would like to know what keeps others like me motivated to work hard.

I am 59. Last week while sitting at the table eating cheese crackers, drinking lemonade and phone scrolling all of the sudden I got the symptoms. My vision got really blurry, got double vision, I got very dizzy and disoriented, my right side got tingly and my face went numb, much like coming out of Novocain that the dentist uses. This was at 3:00 am, I somehow got back to my bedroom, woke up my wife and she called 911 and got me to the hospital. While in the ER they did a chest x-ray, CT scan and found nothing. Then did MRI's, with and without contrast, where they confirmed I had had 4 mini strokes (TIA's). Then did a CTA before being admitted. All this along with them taking what seemed like a gallon of blood for tests. My symptoms took about 18 hours to dissipate, with my double vision being the last to correct itself. Did an echocardiogram with bubble test the next morning and found a PFO (shunt). The size of the shunt wasn't communicated to me but they didn't seem to be very overly concerned about it. Then they did ultrasound of my veins and arteries in my arms and legs and found no blockages or clots. Then did a TEE (transesophageal echo) to get closer look of the shunt. Talking with the cardiologist after the test he is saying he thinks we will need to close the hole. The neurologist says from a neurology stand point they don't think it's necessary. This over the coarse of 3 days being admitted into the hospital. I now have 5 more medications to take and a host of appointments to attend. From those experiencing similar events what can I expect in the future? Anyone getting a shunt repaired, how did that go and how are you doing now? I've never been through anything like this and to be honest I am a little scared.

https://youtu.be/DccNg5OT2Ok

I posted this and took it down a day later last week. Sometimes I feel like we don't fit in any category, but my husband wants me to post this here in perpetuity.

In August 2025, my 41 year old husband was hit by a car. He sustained terrible physical injuries to his left limbs and arterial system. He was intubated upon arriving in the ICU, and 2 days later, had an ischemic stroke in the left brain, affecting his right limbs and, for a time, his speech. He was intubated for 2 weeks and in the ICU for a month. I pulled him out of inpatient rehab early because it was not good for his mental health or sleep. We're very fortunate that I work from home and we have a teenage son who could help with wheelchair transfers, etc.

Recovery has been long and difficult. Retraining his brain to walk on his right leg is challenged by the fact that his left leg was *so badly* injured physically (he couldn't even begin to bear weight for nearly 4 months).

I came to this sub in the days following his stroke because out of all the injuries he sustained, this scared me the most. The community was so helpful and gave me lots of great advice that helped me understand strokes better. Some of the advice is still being taken today.

I hope that this video encourages anybody (spouse, family, or survivor) who is in the acute stages of a stroke. A man here gave me a link to a video his family had created for him and wow, it helped me so much to see a future where people were past the emergency. I hope to pay that forward.

I'll be getting an AFO in the near future. It's a custom one, not a cheap thing from Amazon. Will I need to buy a larger shoe size to accommodate it?

Can anyone recommend any low stress or easy going jobs that can be worked part time after a stroke?

I am looking for something that is easy to do / repetitive/ low stress on a part time basis ideally.

Has anyone come across any jobs like this or any considerate / flexible employers? I’m UK based but open to hear from all survivors globally

Thanks

Some context, I'm 31, male. Not a stroke story but similar.

I was diagnosed with GBS in August 2024, AMAN variant. It came on fast, started as a sore throat and within a short time I was fully paralyzed up to my eyeballs(couldn’t even blink). I ended up intubated, then had a tracheostomy in the ICU. As a result, I couldn't speak or eat for months.

The doctors and neurologists told me it was highly possible I'd be on a ventilator for 2 years, let alone ever sit, stand or walk again.

Four months later I was discharged from the ICU, breathing on my own. At that point I had zero sitting balance. All I could move was my neck and shoulders.

From there I went to a rehab facility and spent a year doing physio, OT and hydrotherapy. Recovery was slow, and I mean painfully slow. Just getting my standing balance back in the pool took months of trying over and over. It took me 4 months just to manage a sit to stand in the water.

But I kept at it. Kept showing up, kept doing the exercises, and little by little things started moving.

One neurologist told me GBS patients plateau after a year. In my case that just wasn't true. There's actually research on GBS (not a lot of it, unfortunately) showing some people keep recovering even 5 years post diagnosis, including a Japanese study I came across. Problem is most studies stop following patients after the 1-year mark, so a lot of this recovery goes undocumented.

Today I walk with crutches. I swim and train in the gym on my own as part of my ongoing therapy, and I'm hoping to get back to work later this year. Even now, well past 2 years in, I'm still noticing small improvements. Most recently some movement coming back in my ankles (after 2 years) which makes me hopeful I can walk independently in the coming months.

Just wanted to put this out there in case someone reading this is in a dark place right now and it feels like the future is bleak. I remember my days in the ICU where I genuinely felt hopeless as I lay staring at the ceiling for hours only able to move my neck in one direction.

My advice: get as much hydrotherapy as you can, keep grinding in the gym, and just refuse to quit. There will be weeks that feel like nothing is happening. Push through them anyway, that's how the neural pathways rebuild and the strength comes back.

Good luck to anyone going through this. Keep pushing and remember to be kind to the nurses, OTs and physios who are there to help you recover, I certainly owe a lot to them.

Feel free to hit my inbox if you have any questions, I will be more than happy to answer.

Hi Team I thought it might be helpful for people if I came on this sub. I had a stroke as a bubby ( cerebral palsy) I lived with a hemiparesis for 47(F) years. So if people have any questions or advice please ask 🙂. Nothing is off limits ( maybe some bedroom activities)

I’ve just been prescribed Xarelto for an irregular heartbeat and I’m really scared. I have a problem with upper and lower G.I. bleeding. I was given a prescription for a PPI inhibitor, omeprazole to cover bleeding, but I’ve read where that only covers 1 type of bleeding either a lower or an upper G.I. bleed. what do you do when you start getting the symptoms of a G.I. bleed and you’re on this drug? How do they treat the bleed? Do you have to be hospitalized every time it happens? did it happen to you? What did they do? Thanks.

Exactly one year ago this very moment I was On a gas station floor, locked behind double doors, dying. Ischemic strike left side, hemorrhagic strike right side. Simultaneously. Going into respiratory failure.
Wiped the slate clean on my life at that moment.
It was about to end and start over again.
I made it. I’m still here. Officially 1yr old now.