1. < Stroke & Cerebrovascular Diseases

Post Stroke Recovery: Want to talk with others

Posted by janie1gypsyy2001 @janie1gypsyy2001, Jun 26 1:22pm

I had a Hemorrhagic stroke in 2017, Went into kidney failure, was placed in a medical coma for over a month to allow for healing.
While in a coma and on a Ventilator, my family was informed by physicians, that very few recover from this situation. They were encouraged to remove all life sustaing measures and let me go. My family refused to give up on my chances to recover. I came out of the coma with Left Hemiplegia, and memory issues. I spent 7 months in institutionalized care. A stroke specialty facility, then to Rehab, all this from Jan to August before, being discharged to home. It has been difficult, but with Home Health Therapy, I have progressed to the point of walking w the use of a walker. I exercise every M,W& F. I use my recumbent exercise bike Monday- Friday, 5 days weekly x 30 minutes. There seems to be no support for a walking/talking stroke survivor in my area. Is anyone able to offer direction for resources? I am in Lakeland, FL.
I would like to talk w other stroke survivors!
I would like to continue to progress!

Interested in more discussions like this? Go to the Stroke & Cerebrovascular Diseases Support Group.

Scott R L | @scottrl | Jun 26 3:10pm

"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!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 26 4:09pm

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?

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shani | @shani | Jun 28 8:27am

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

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1 reply
Scott R L | @scottrl | Jun 28 3:30pm
In reply to @shani "Janie, First you are very strong in your perseverance to improve. That’s very impressive and important..." + (show)
@shani

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

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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.

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