Post Stroke Recovery

I just joined this group and this is my first post. I had a hemorrhagic stroke in January of 2014, due to a dripping brain aneurysm. The aneurysm ruptured during the coiling procedure, which left me paralyzed on my left side. I have regained use of my arm and hand. I can stand and walk unassisted a few steps and walk very slowly with a cane. I do better with the cane if someone is also holding my hand. I have spasticity on my entire left side and in some areas in my right side. I've been receiving Botox injections every 3 months for 7+ years. I tried Dysport for 1 years, but I felt ill for the entire year, so discontinued use and went back to the Botox.I have been diagnosed with arthritis in my left hip and my neck. I have limited range of motion in my neck and for the last year have been experiencing significant pain radiating from my neck down my back and my arms. I also have a bulging disc in my neck and one in my lower back. Currently I see my chiropractor 3 times a week and use a neck decompressor. This has helped somewhat.In June of this year I began the stem cell process for the arthritis in my hip. I've received several plasma injections and one stem cell injection and the improvement has been great! The pain in my hip is gone and the muscles are so much softer in the hip and upper thigh. I couldn't be happier with the results.I had been hoping to also receive stem cells for my neck but because the arthritis is in the first 3 vertebrae the place I went to would not treat my neck.This pain is sometimes so debilitating and can last for hours. It seems to last longer now than when it first began.After the stroke my doctors told me that the only pain medication I was allowed was Tylenol. This isn't exactly ideal for my current situation.I'm a registered volunteer with the All of Us Research Program, which is a national program. I am willing to volunteer and help anyone who has been afflicted from a stroke, but most clinical trials for stroke are not for hemorrhagic stroke and also want you to be a few months post stroke. I'm 9 years post stroke. I belong to a stroke survivor support group on Facebook too. Due to my experience with these groups I cannot express enough that stroke recovery does not stop within the first few months or the first year!! I continue to improve, but I'm getting older and I could really use some additional help from the medical community. My parents both lived into their 90s so it is not irrational for me to think that I could have an additional 30 years ahead of me if I could move properly.Three years ago I had an amazing 5-6 hours of walking normally. Everything worked except my toes. I couldn't wiggle them or stand on my toes, but at this point they had only recently begun treating my foot for spasticity. Since then I've regained more feeling in my foot and toes but still am unable to flex my foot, move my ankle from side to side, do plantarflextion or move my toes.My husband accidentally struck my toe and it sent a radiating pain all the way up my body to my neck and the lights went out on my ability to walk normally. Back to the cane and labored walking.Anyway, I know it's within me to be able to walk normally, I just don't know how to get it back.A year ago I had an MRI of my brain. I met with the Director of Neuro Sciences to go over the results. My brain is perfect (his words). The bleed from the aneurysm is gone, the coiling is perfect, there is no sign of the stroke on my brain. He then looked at me and said, "Your brain is perfect and I have no idea why you aren't walking."On one hand that was wonderful news, but on the other??So what am I supposed to do now? Are there any other treatments that I haven't tried? I've also done acupuncture and massage therapy.Thank you for reading this long post.

"I would like to continue to progress!"

If that's what you're determined to have, that is probably what you'll get. The only question is when.

My own stroke recovery has been like that. As long as I keep working at it, I keep getting better. But it's very slow.

Finding others to interact with is difficult. I struggle with isolation as one of my biggest challenges. I did find a Stroke Group in my area (Tarrant County, Texas). I found this group near you. Could they help you?
https://www.stroke.org/en/stroke-groups/strokeneurological-injury-support-group
You might find my YouTube channel interesting: "From Recovery to Discovery"
https://www.youtube.com/@srlucado/videos
Congratulations on your tenacity!

Welcome, @janie1gypsyy2001. I moved your discussion to the Stroke & Cerebrovascular Diseases Support Group here: https://connect.mayoclinic.org/group/cerebrovascular-diseases/

I did this so you can connect with others who are in post-stroke recovery like @kybamerica01 @scottrl @sally12345 @v8s @hfp @tamerahunt @mb0926 and more.

What has helped your recovery?

Janie,
First you are very strong in your perseverance to improve. That’s very impressive and important in recovery and we know it’s a slow, constant and daily push to make any bit of improvement, but as you have seen… it’s all possible. You can continue to defy the odds!
I survived two strokes in 2017, renal failure, had severe liver damage plus now have a pacemaker and a few other ‘’juicy’’ issues but I keep pushing every day. I walk extensively without assistance, ( I carry a fold up cane for night or if I’m going to unknown areas), I carefully live alone, do most everything except step up or down a high curb, use steps without a handrail, run, step over obstacles/puddles or drive a car. I keep daily lists, play sudoku, work puzzles, exercise most days, try doing anything I couldn’t do yesterday. I’ll never give in to anything or to anyone who has an attitude of defeat or sympathy. I am a retired OT and I am an example of rock solid belief in neuroplasticity which has returned most of my fine motor abilities. In my early post stroke days using a walker and I saw someone walking down a long stairway using a cane and thinking ‘’some day I’m going to do that’’! I now can and then some. You MUST have the best and supportive doc, PT and OT you can find in addition to family and friends who will support your efforts. You must ALWAYS be smart and safe, say ‘’I can’t today ’’ but ‘’I’ll try’’ ! Hope this helps, Shani

Congratulations on your progress & your helpful story!

Your mention of support reminded me of something I experienced: If there are people in your life who are not on your side, get rid of them.

My feeling is this: I'm in the fight of my life, and I have no time, patience, or energy for anyone who detracts from that mission.

My life got better once I realized this and put it into practice.

Briefly, here is my story so far. I believe I’m a stroke survivor. I say it like I think I am because I have been in hospital for the past week and half. What happened was that I was feeling woozy and faint at home for awhile, and then finally got a ride to the hospital. I had high blood pressure. It was hard to walk. They immediately brought me to ER and gave CT scan and all. It turned out to be swelling of cerebellum. Days late—in intensive care—they are saying I won’t need surgery after all and I am so lucky from this experience. Now, seven days later I am still here but the “lucky” part they refer to is that I am now coherent and was the whole time. In other words, I can speak and think and my memory is still with me. The problem is walking for me. Although, they did say that with time, that part will repair itself due to elasticity in people’s brain.
Another thing is that I am an expat living in China. Originally American. I have been here for ten years but still my language skills are dodgy. The hospital where I am is one of the best around (an international hotel based in the city of Suzhou) and the nurses and doctors are caring me meet me half way with communication. I do have some who cares for me, that is good (although cultural and language barriers get in way sometimes).
So, in many respects I am in a good condition. The hurdle I face is recovery. It seems everyone is optimistic about it, yet realistic at same time. It will take some time. As I said, I am cognitively aware of everything!; it’s just mobility. I haven’t lost memory or anything, although I am going to struggle with moves. And I was between jobs because it is summer.
Well, not to share with everyone my pity party, but wanted to get off my chest what is happening. Has anyone been in this situation? It is very particular. I also see many discussions around “strokes” in this forum, but I thought I’d start a fresh one instead of piggybacking on another….it fits in this instance.
Thank you for listening. I know it’s a lot, but as I said I wanted to get it off my chest unless it eats me up at night. Peace to you all.

Get a walker and start moving around hallways, will get you walking again, take ot for nerves affecting balance, takes time but works. Do they know why cerebellum was swollen?.

Good advice on walker or cane. Cane might look cool, too,
The cerebellum was swollen from blood vessel blockage in spine, I believe. I’ll be getting a full synopsis soon.

Had three strokes in cerebellum, balance and walking were issues but over came it. No answers why for me about how this happens.

Okay. Three strokes and still alive. At lease you came out walking, if walking and balance were issues that you overcame.