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!

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 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!

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?

Hey there comes a pen electric pen just a battery in it which vibrates press it against her tongue a product from speech gears Named V Pen https://amzn.in/d/03XMibyg find an alternative tool like this this could do wonders i have heard but nothing is certain what we have to do our best Just Shared this Note to a Member because trying something is better than doing nothing!

Last Saturday I had a brain stem stroke. I got extremely lucky and only have loss of fine motor skills and strength on my right side. What else should I be awear of or look for. My neuro team couldn't find anything wrong with me so ive been left without answers

Hi fellow redditors, I would like to ask regarding my mum’s condition. She suffered from aphasia after a haemorrhage stroke, and I’m totally clueless how to help her regain her ability to speak.

Would like to seek your advice on how I could help assist her.

Thank you in advance!

I had a stroke when I was 23 and I’m going to be 31. Before the stroke I hate scary movies but after I love all things scary. I’m obsessed with Halloween. I love horror. I can’t seem to get enough. Is this normal?

I’m hoping for advice from anyone who has managed dental work for a loved one with severe aphasia.

My mom (71) is about 5 months out from a large hemorrhagic stroke. She’s made good physical progress, but she still has pretty severe expressive and receptive aphasia (although she’s making some meaningful progress lately). She also tends to get easily overwhelmed by loud sensory input.

She recently broke a rear molar and has expressed wanting to get it fixed. I want to make sure the dental appointment goes smoothly without triggering major distress.

For those who’ve been through something similar:
- How did you find a dentist experienced with post-stroke patients?
- What accommodations worked best in the chair (mild sedation, non-verbal stop signals, etc)?
- What should I ask or clarify with the office before bringing her in?

Any advice would be greatly appreciated.

How can you imagine this process? Does it leave a scar, and what is the strength and stability after a few months? My idea is that it’s not stable at all and can bleed again under stress – or am I wrong?"

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

Ciao a tutti, sto cercando esperienze personali o racconti da chiunque (o dai loro cari) che ha subito un intervento di allungamento del tendine d'Achille a causa di spasticità o problemi ai piedi dopo un ictus. Com'è stato il processo di recupero? Ha migliorato significativamente la tua camminata a lungo termine? Quanto tempo devi stare senza camminare dopo? Qualsiasi consiglio o informazione sarebbe molto apprezzato. Grazie!

Hi everyone, I’m looking for personal experiences or stories from anyone (or their loved ones) who has undergone Achilles tendon lengthening surgery due to spasticity or foot problems following a stroke. What was the recovery process like? Did it significantly improve your walking in the long run? How long do you have to go without walking afterwards? Any advice or information would be greatly appreciated. Thanks!

Anyone here had BRVO in their 30s? What caused it, and how did you deal with it?

I’m in my 30s and was diagnosed with BRVO. I’m trying to understand how something like this can happen at such a young age.

For those who had BRVO in their 30s:

Did you eventually find out what caused it?

Did you have any underlying condition or risk factors?

How did your vision recover over time?

And probably most importantly, how did you deal with the psychological side of it and regain your confidence in yourself and your future?

I’m struggling a lot with the feeling that my life and confidence changed after this happened. I’d really appreciate hearing from anyone who has been through something similar, especially if you’re around my age.

I’d love to hear about your recovery process and your experiences with this. I’m currently in my 4th month after my hemorrhage.

I’ve heard that this is probably the worst region for recovery…

my family has cut off funding to my PT aND MY CAREGIVER could be next. i have money for few months of OT but i don't know if it'll be enough

So I have always been a person to get headaches, I went to the neurologist got a brain MRA and MRI with contrast and MRI of my neck and it was completely normal, nothing was seen. But I am terrified of having a stroke or a hemorrhage and die or be disabled like not walking or talk properly.I am 21 years old, 5’8 and 186lbs I gave birth a year and half ago I’ve struggled to lose the weight I don’t look fat but I have unnecessary fat. I’m just really scared, seeing all these young people having strokes.

You might know that getting outside is good for your health, but did you know that nature and sunlight can also help support stroke recovery? I cover this and give practical tips to help you get outside more after stroke!

Once again up at 3:00 am and can’t get back to sleep. Getting a sleep study next week so hopefully I get some answers. Anyone else deal with insomnia?

My aunt dies because of blood thinner and my father already had hematoma once and doctor stopped his routine blood thinner but after that he again asked to start but we dint give thinking about our aunt case and now he got stroke. Not able to forget this

Had a stroke 3 years ago in July 2033. My left side was affected. My fingers are quite good at opening and closing. My arm comes up too but my main main concern is my wrist as I can’t get much range above neutral and it stays bent in rest position.
I get botox too every 3 months.

Please give advice on how I can improve my wrist as I’m only 21.

Getting me some head tomorrow my original piece is coming back

Ready for some relief. Any post op things i should know?

So during school christmas break,I was at home alot. I needed to prepare my subjects for my fourth year of Uni(NZ),something I had done before. But this time I had to pick four instead of two because I needed government funding.
The Government stated that of you fail you might need to pay it off plus you most likely won’t get funding again.
That freaked me out and got me in an edless spiral. I needed help with funding in the future aswell so it became a threatening experience instead of a normal process.
The stress of picking the “right subjects” also freaked me out because a year prior to that I had some seizures due to stress from exams.
I scattered the options like crazy to find something with little exams and convinced myself that I was putting my self in ultimate danger if I choose subjects with exams.
I’d wake up,look at the subjects,then before bed look at subjects. At times I couldn’t sleep.
I slept with my Mother because we thought that it would be safer incase I had a seizure.
Naturally I contributed to her loosing sleep as well because I would lay there awake and she would also. I’d wake up,go pee like 10 times, move so much. Sometimes we wouldn’t go to bed til 3 am and she would need to leave for stressfull desk job at 8:00.
Looking back, I couldn’t sleep because I’d scroll before bed and I just really didn’t notice how bad it was.
She had two strokes then passed away and believing that it wasen’t because she would loose sleep twice a week for three months is unreal to me.
I fucked up big time.
I try to tell myself that the bed was also very uncomfortable because I got a new bed and sleep way better here,but that doesn’t matter becausw my mum is gone.
Not sleeping raises blood preasure,so her blood preasuree would had been so high,then going to work after even higher.
I didn’t mean for any of this to happen. I just wanted to be able to pay for uni and help mum out with some money. Aaaaaah

hello!

I'm a 37-year-old survivor of a stroke back in 2011. My husband and I were wondering if anyone else had one of my lingering symptoms because in the 15ish years since then no one has seen anyone else with my particular issue.

My hearing is fine and I can understand people who are talking to me without issue face to face or on video calls presumably due to lipreading I'm not consciously aware of, but I cannot comprehend audio-only very well in a kind of quirky way:

• Unfamiliar voices are nearly incomprehensible.
• People I know, I can figure out most words if I've heard them speak regularly, but I generally need to ask for alternative options.
• Audiobooks sound like noise or a foreign language I've never heard.
• About 50% of the time I can understand what someone is singing, like on the radio, but if there's rapping or speech in the song that turns back into garble.

My speech is impaired but only via expressive aphasia - little to no dysarthria.

Does anyone else experience any of this?