My mom had a left side ischemic stroke in early September and was able to come home in early October after 2 weeks in rehab. When she got home she only got to stay one night before ending up back in the hospital for another few days because the rehab center gave her horrible meds that caused her to pass out. I was so scared and felt so bad for her because it was the first time she'd gotten to be clean and comfortable in almost a month. She has general aphasia, eyesight impairments, trouble moving around, can't remember things, etc. My sister and dad both work so I'm the one that has to watch her for 10-12 hours every day. Neither one of them wants to help when they get home, my sister goes to sleep or out with friends and next week she's even going on her second vacation this month. My dad works long days so he's always tired and complains when I ask him to do anything. I have autism so it's so hard to get up every day and have to take care of her without any time for myself for a break. I can't even drive so even if I did have time I can never leave. I'm alone all day with no one to talk to because everyone I know works and lives out of state and she can't have a conversation with me (when she even acknowledges me at all). She's so out of it every night and morning and it's so scary trying to make sure she's not having another stroke because she already has another blockage.

I miss her so much even though she's still here. I miss hearing her voice and talking with her, watching videos with her, looking at social media with her, going shopping with her, etc. I know it's still early on but I feel like I can't keep doing this but there's no choice because it'll make everything worse if I say I can't. Everything is too much. I just wanted to get this out because I have no one else to tell right now.

In April we had a pet die, then in August another one died, and now this. It's all too much.

Hi everyone, I hope this post is okay to share!

I’m Cianna, mum to a little girl with hemiplegia, and the person behind HereforHemi.

We started HereforHemi in April this year because we wanted to bring families affected by hemiplegia and cerebral palsy together, help people feel less alone and give our children the chance to meet others who understand their journey.

Since starting, we’ve grown to over 600 families and have been organising meet-ups across the UK, bringing families together to make friends, share experiences and let our children see they aren’t the only ones going through this.

WE’RE NOW LOOKING FOR MEET-UP HOSTS EVERYWHERE!

We want to reach as many families as possible, not just in the UK but internationally too, and we’re looking for parents, carers or anyone passionate about bringing the hemiplegia and CP community together.

What does being a host involve?

It’s simply helping us organise a local meet-up in your area. This could be a park meet-up, a picnic, a family day out or something else suitable for our families. You’d help choose a location, share the event with local families and help everyone feel welcome. You don’t need experience organising events, and you won’t be doing it alone. We’ll support you with planning and helping bring families together.

Our aim is to build a community where parents can connect, children can make friendships and nobody feels like they’re doing this journey on their own.

If you’d be interested in hosting in your area, or would just like to find out more about what we do, please comment below or message our page, HereforHemi.

We’d love to hear from people in areas we haven’t reached yet, anywhere in the UK or abroad. We want to keep growing this community and make sure more families have the opportunity to be part of it.

Hello everyone, my dad (59 yrs old turning 60 in a week) had a hemorrhagic stroke on August 26th and has been in the hospital since, he spent two days in ICU and has been on the stroke unit now and will be moving to inpatient rehab within the next couple of days. His movement on his left side was completely gone but he has regained some movement in his leg and hands, he is also able to bring his arm towards himself when laying down but he can not lift his arm upwards and has no shoulder movement. My dad has been getting physio and ot since he was in the icu and they are currently working on getting him to stand and sit on his own but have not been working much on the shoulder/arm.

Today the doctor informed us that his arm movement may not come back which has left my dad feeling super discouraged, I’m hoping people in similar situations can share their recovery stories and what helped them. Any stories/tips are appreciated, please do share! Thanks in advance.

Hi all, my dad is 5 months post ischemic strokes. He’s been home now for two months from his skilled nursing facility that nearly killed him. I’m currently trying to get him back into an inpatient rehab facility per recommendation of his home health team and his doctor. I have provided a doctor’s note referral and waited 60 days for his Medicare benefit period to start over. I was told by the rehab liaison the doctor there said there needed to be a new arisen medical complexity in order for him to be accepted. Honestly, it sounded like the doctor barely read my notes nor contacted his home health team. I was firm with her because as you can imagine 5 straight months of advocating and being told every negative possibility has given me a “no BS” pov. At the end, she told me she’d tried to talk to the doctor again and I told her I could provide whatever needed to increase his chances.

In short: he went from ICU for a week, inpatient rehab for two, skilled nursing for 2 months, and has been home for two months. He has original Medicare as of 2 months ago. Before that, he had a Medicare advantage plan while he was in the hospital up until I changed him over. Has anyone ever had success with getting yourself or a loved one back into and inpatient rehab facility after all that? I understand they have to follow healthcare law, etc, but something about the whole conversation just seemed like everything I sent was disregarded. He really really needs this and I’m trying to help my family out where I can

-A burnt out only child who is at her end with the American healthcare system

My family member is a 30sM is in icu in Orange County california with TBI after an accident. Having trouble weaning the vent. It sounds like the kindred LTAC facilities the hospital case manager is recommending have a poor track record with infections and readmissions. is there a way to hire a private case manager to help me find a better facility? Ultimately the goal is to hope for the best and get out of LTAC asap and get to TIRR in Houston for rehab. Willing to travel for LTAC.

Hello all. Thank you for all the love and advice on my previous post.

I’m wondering did anyone else experience parathesia in their head after their stroke? (Tingling, like pins and needles, on their scalp and around) I’ve read that it’s normal but it still causes me anxiety.

Also , does anyone find that their muscles go weaker as the day goes on?
After my stroke physiotherapy was not offered to me because my arm and leg were deemed back to normal, but sometimes I swear I’m regressing. Some days they feel normal and others it’s like I’m re stroking and they go so weak.

The brain fog and mental fatigue has been awful this week. I’m hoping next week can be better.
As always responses so greatly appreciated ❤️❤️

Hey everyone. I got my MRIs back and I have not heard back from a radiologist or my doctor for about a week. I was looking through the pictures myself and saw this in the brainstem. I have had for months mild vision issues, dizziness, vertigo, brain fog, etc but am able to get through the day. I panicked and went to the ER and the doctor said it looked normal. I still feel odd at ends. Can anyone calm me down?

Hello. I’m 28 years old, female. I’m overweight for my height (180 lbs, 5’4”), my cholesterol is normal-to-high and my blood pressure fluctuates between normal to Stage 1 Hypertension. I’m on birth control and have been for 12 years (combined).

Went to the eye doctor as earlier this week, I had a moment where everything went black as if I’d blinked. I brushed it off but it happened again today and booked an emergency eye appointment. Good news is my eyes are totally physically healthy but my doctor suspects I’ve had a TIA/mini strokes.

She then says it puts me at risk for having a stroke within a few days to weeks. She referred me to my city’s hospital stroke clinic for assessment and sent my GP all the info. I’m scared as the stroke clinic/specialists work Mon-Friday. It’s Friday, it’s closed now, and only reopens on Monday.

Do I go to the ER? Should I get urgent assessment done, start some kind blood thinner, get the imaging done?! I feel crazy just waiting for the weekend to trickle by but not sure what to do. I’m obviously pretty scared and really freaking out about a more serious event happening before the specialist clinic calls me with an appointment.

I actually have a few

I usually can’t tell when I’m hungry, I’ll get nauseous or moody and that’s my cue to eat

Constipation (the damn baclofen backs me up)

Diarrhea (happened constantly before baclofen pump placement)

Can’t fully empty my bladder, and always have to go (sometimes it comes on so suddenly I have to run to find a bathroom)

I can’t understand when people talk to me (I’m the queen of saying “WHAT?”) My grandma and I might become hearing aid buddies..

I don’t know how to talk at a normal volume (I swear I’m not YELLING, I just don’t know how to be quiet)

And an honorable mention:

This weird condition where strangers look at the way I walk, and then when I look over they stare at my shoes..

😂
A STROKE OF GENIUS… OR AM I JUST LOSING THE PLOT? 🤣
Since having my stroke, I’ve had to come up with ways of keeping track of things because apparently my brain has decided that remembering where I’ve put things is now an optional extra! 🤦‍♀️😂
So, I’ve been sharing a few tips with my fellow stroke survivors about things I’ve found that actually help.
Here’s where I’m up to!
📱 THE PHONE LANYARD
I got myself a crossbody phone lanyard so my phone is permanently attached to me.
And do you know what? IT WORKS! I haven’t been constantly losing my phone because I always know where it is.
Result! 🎉
BUT… there’s a fucking downside! 😂
Having the bloody thing attached to me all the time is starting to get on my nerves.
It’s constantly dangling, banging against things and getting in the way. And it’s not just butt-dialling people!
If I’m trying to write something on my phone and walk off to do something else, the phone is still dangling from me. It starts pressing buttons, interfering with what I’m doing, and sometimes things get lost or interrupted.
It’s bloody infuriating when you’re trying to concentrate and your phone decides to have a mind of its own! 🤦‍♀️🤣
So now I’m wondering what’s worse:
A) Losing your phone approximately 47 times a day because your post-stroke brain has decided that remembering where you’ve put things is an optional extra.
OR…
B) Having your phone permanently attached to you like some sort of electronic BALL AND CHAIN, banging into everything and interfering with whatever you’re trying to do!
Honestly, I don’t fucking know anymore! 😂
At least I’m not losing it, I suppose. Small mercies!
📌 A LITTLE TIP IF YOU USE A PHONE LANYARD!
Remember to SAVE what you’re doing and LOCK YOUR PHONE before you start walking around!
I’ve learned this the hard way.
If you’re writing a post, a message or anything else, save it first and lock the screen before you move.
Otherwise, you might accidentally open something, interfere with what you’re doing or lose the bloody lot!
SAVE IT. LOCK IT. THEN WALK AWAY! 😂📱
👓 THE GLASSES SITUATION
I’ve also been trying to find ways of keeping my glasses safe because the last thing I need is to lose them or accidentally break them!
I’ve got glasses with attachment holes, and I’ve ordered a little clip-on, zip-up glasses case to help keep them protected.
I found one on Temu because the options I found on Amazon were naff! 😂
I haven’t lost my glasses, thankfully, but I’m trying to be proactive because breaking them would be another bloody headache I don’t need!
If anyone wants details of the case, message me and I’ll tell you where I got it.
💨 AND THE VAPE?
That’s another thing I need to keep track of!
I’ve got a little bag/pouch for it, so at least I have somewhere to put it instead of constantly wondering where the bloody thing has disappeared to.
We’re developing systems here, people! 🤣
🧈 AND DON’T EVEN GET ME STARTED ON THE MARGARINE!
At this rate, I’m going to need a tracking device on the fridge!
My solution is to keep it in one designated, brightly coloured tray in the fridge so it has its own place.
Because apparently even a tub of margarine needs a security system in this house! 😂😂
❤️** THE REALITY OF LIFE AFTER A STROKE
You find ways to adapt. You try things. Some work brilliantly, and others create a whole new set of fucking problems!
The phone lanyard has stopped me losing my phone, but now I’m practically attached to the bloody thing 24/7.
My glasses have a protective case on the way, my vape has a pouch, and the margarine is under police protection! 🤣
I’m sharing these things because sometimes it’s the little everyday problems that drive you absolutely mad after a stroke.
You have to find new ways of doing things, and what works for one person might not work for another.
I’m learning as I go, and if something I’ve discovered helps somebody else, then that’s a good thing.
**MY CURRENT SYSTEM:
📱 PHONE: ATTACHED.
👓 GLASSES: ACCOUNTED FOR.
💨 VAPE: IN THE POUCH.
🧈 MARGARINE: UNDER POLICE PROTECTION.
🧠 BRAIN: STILL UNDER INVESTIGATION! 🤣🤣
OVER TO YOU, FELLOW STROKE SURVIVORS!
Have you found any ingenious ways of keeping track of things since your stroke?
Have you discovered any gadgets that genuinely help, or have you found that your brilliant solution has created a whole new set of problems?
And does anyone else use a phone lanyard? Have you found a way to stop losing your phone without having the bloody thing banging into everything and pressing buttons when you’re trying to get on with your life?
Please share your tips, because we’re all learning from each other!
And remember, if you see me walking around with my phone attached to me, my glasses secured and my vape in its little pouch, don’t ask me where the margarine is.
I’M STILL WORKING ON THAT ONE! 😂😂❤️

Your favorite song could help you walk better after stroke. Research shows walking to a beat can help you walk better and faster. I’ll explain why it works and show you exactly how to get started at home!

My mom had a minor stroke about 6 months ago and has been taking meds & pt - thankfully she did not sustain major physical issues. She just had another stroke, and her whole right side is paralyzed. She can’t speak or eat.

I don’t live near her, but am her only child. She’s a smart woman, and it breaks my heart that she will never be the same. The police had to break in through her window to get her to the hospital, and she may have been suffering for hours until then.

I just don’t know what to do. I work full time and am in graduate school and own pets - all I left behind for this emergency visit. I feel so alone, and I’m just very bummed about my mom’s state and the trauma she sustained the past 24-48 hours.

I wish I had family help. I wish I was able to move next door to her and take care of her. I feel like I’m going to let her down. I know this is all raw emotions right now, but I don’t know how I can be her caregiver and care for myself.

My dad was admitted to a hospital in Georgia on October 3 after suffering a severe stroke. He cannot move the right side of his body, and his doctors anticipate that he will need extensive rehabilitation. Since being admitted, he has also developed ARDS and pneumonia, which have prolonged his hospital stay. As of October 15, he is still intubated. He has no health insurance.

When he was first admitted, we spoke with a caseworker who explicitly advised us NOT to apply for Medicaid because she wanted us to pursue a charity bed. We were told that applying for Medicaid would prevent him from qualifying for the charity bed at a nice facility. Based on that information, we followed her guidance. Now, we have been told that the charity bed is no longer an option and that we need to apply for Medicaid to cover his hospital bills. (They are really pushing us to fill this out ASAP)

I spoke with the caseworker again to say my dad cannot safely come him and our family does not have the resources to care for him. The caseworker ignored that and continued emphasizing that he could potentially receive an in-home nurse through Medicaid. However, we are concerned that home health services would not be sufficient for his needs, especially given the severity of his stroke and his other medical complications.

When I asked the caseworker to help us find rehabilitation facilities that accept Medicaid, she said there were none in Georgia. She also stated that she is not allowed to help patients who do not have insurance and that the hospital cannot do anything else for him. We are now trying to figure out our next steps before he is ready for discharge, which could be within the week.

Another point of confusion is that, from what we have been told by the caseworker, the Medicaid application for his hospital bills is different from the Medicaid coverage he would need for care after discharge. She is telling us to apply for Medicaid to cover his hospital stay, but she has not provided resources or assistance for applying for what we understand to be regular Medicaid that could potentially help with rehabilitation, in-home care, or other ongoing services, depending on eligibility. We do not know whether these are actually separate programs or whether applying for one affects eligibility for the other.

My questions are:

1. What happens if the hospital tries to discharge him? Can the hospital discharge him to our family even though we have explained that we cannot care for him? What should we do if they attempt to discharge him without a safe plan

2. Should I apply for Medicaid independently or insist that the hospital caseworker help us? Given that we were initially told not to apply, have we lost any potential benefits or options? Is there a way to get Medicaid coverage for his hospital rehabilitation, if he qualifies?

3. Is it true that the hospital cannot help us because he is uninsured? I find it difficult to believe that the caseworker cannot assist with discharge planning or placement simply because he does not have insurance. Is there someone else at the hospital we should contact?

People assume that because I look healthy and stay active, I must be fine. What they don't see is how much I struggle every day.

Since my strokes, even simple instructions and everyday tasks can leave me confused. I also struggle with aphasia. I know what I want to say, but I often can't find the words.

I've kept my strokes private because I'm embarrassed. But lately, when I struggle to understand someone, I find myself blurting out that I've had strokes because I don't want them to think I'm stupid. I get frustrated, sometimes cry, and end up explaining myself. Then comes the sympathy, which somehow makes me feel even worse.

I don't want pity. I just want to feel like a normal, capable person again. I don't know how to navigate life when my brain no longer works the way it used to.

I can barely even find the words to explain this.

My family member needed to go to ER two years because suddenly in the middle of night he felt something like a explosion in his ears . He had tinning for a long time before that but according to him that feeling of sudden explosion was different. He also explained that for a few second he lost his consciousness, however after few seconds the consciousness was back and he was able to go to ER on his own. In ER initially they assumed him assuming he had TIA however after multiple MRIs and CTs on the same night TIA was ruled out. He was sent back home telling him everything looked normal. He just continued his normal life in addition to having the tinnitus he had before that night as well. They just said they see disease on the vein left side of neck, he was seen by a cardiologist did different heart related tests and finally he said all was fine.

Two years after he was diagnosed and treated for tongue cancer. The MRI before his surgery didn’t show anything about his brain issue, however the MRI he had 5 months after surgery shows scars of an old silent brain stroke .

The mystery now is that when that had happened? It seems it didn’t exist before his tongue cancer surgery according to MRI ( two years after ER visit) . So it has happened either shortly before the surgery, during surgery or sone time after surgery . In that case so what had happened in that ER night two years earlier.

I’m just wondering if anyone else has similar experience? He also doesn’t have high blood pressure and only mild elevated cholesterol happened before the surgery. ( he also had hematoma right after surgery was done in the hospital)

Just over a year ago at 43, I had a massive 5cim stroke in the right basal ganglia of my brain. I was 43, on the bathroom floor and could hear my wife and son in the other room. My wife found me and phoned an ambulance despite my protestations. Got to hospital, informed it was a stroke after a CT scan and had that sinking feeling of “Oh fuck, nothing is going to be the same,” complete left-sided paralysis, was able to take a few step after a few weeks. Turned 44 in hospital, they made me a cake! Turning 45 next week and finding it really hard. Can’t shake the crushing constant sadness and anxiety. Often think it would have been easier for everyone if I had died. Got out of hospital after 2 months on my own two feet. Had a home team of a physio, OT and SKT come to the house for 8 weeks which was great. Was then on my own pretty much until a 3 month stint in the National rehabilitation hospital last summer.

My walking and speech greatly improved but my arm and hand are still as they were essentially. I’m so sad all the time. I don’t have the energy for anger or frustration. I’m going to a very state of the art Rehab place with Tyromotion robotics in a couple of weeks for a 40 hour programme for my upper limb. If I don’t recover functional use of my arm I don’t know how I’ll cope. I don’t think I’ll ever be able to accept or make peace with my arm as it is now if this is as much as I can expect to recover. My family are having a birthday party for me on Saturday and I just want to cry all the time. I feel like I’m letting everyone down by not recovering properly. I just want to be able to hold my son’s hand and be the Dad he thinks I am. I don’t want to limit him because of what I can’t do.

Hello everyone!

I noticed there haven't really been many discussions about severe aphasia recovery in recent times, so I thought I would start one.

My mother, a 43 year old woman, was left with severe aphasia and apraxia after her stroke about 3 months ago now. She has been doing speach therapy, both in hospis, for about 8-10 weeks since her stroke and ambulatory speach therapy, now twice a week online and when we can get an appointment to meet a speach therapist in person than also in person. For now, we have been able to see a speech therapist is person at last once a week, but sadly now there will be a in person brake until November, unless some appointment times free up.

She isn't yet able to use any words at command or read or write yet, but I would say her apraxia has gotten significantly better and if someone helps her with the beginning of words, than she is able to pronounce most of them.

What are your experiences with severe aphasia? How did the recovery timeline look for you or your loved one and how far have you/they come today?

Hey! I’m doing a research project on how people with arthritis or limited hand strength open and hold their makeup. If you have trouble with things like twisting off mascara caps or holding a lipstick steady, I’d really appreciate 15 minutes of your time to hear about your experience! Happy to do a call, video chat or just text, whatever’s easiest for you. Feel free to comment or DM me. Thank you!

Hi everyone! I'm having Achilles tendon lengthening surgery on my left foot on November 16 because of foot drop.

I use a wheelchair, and I'm nervous about what recovery will be like, especially managing at home.

I'm hoping to find someone who has had this operation because of foot drop or a neurological condition, rather than an Achilles rupture.

If you've had a similar experience and would be comfortable chatting privately, please let me know. Thank you! ❤️

I had a stroke about 4 months ago to the day. I still have the fatigue, I get super grumpy if I don’t listen to my body and nap, it almost seems like I can remember things that happened before the stroke like I could before but things that have happened since then don’t stay in my brain, if I do too much I still get some numbness in my hand, and I forget words/pause in the middle of sentences. I know I’m very lucky, but I am also frustrated that I still have symptoms. My CT scans are now coming back normal so I guess I expect my brain to be back to normal. Am I crazy to have that expectation?

Does anyone have any insights as to what this dx could mean for prognosis?

SSH is 52yo, strokes 12 weeks ago, unable to participate in rehab, bedbound since, cognitive decline and personality changes.

Any info greatly appreciated.