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bella

Stroke Survivor - female
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    45
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About bella

  • Rank
    Associate Member
  • Birthday 12/29/1960

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Shared Information

  • Stroke Anniversary (first stroke)
    11-09-2000
  • Facebook URL
    http://
  • How did you find us?
    Google Search

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  • State
    MA
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  1. I think that's a great idea. I really hope others will contribute and share stories of long time recovery.
  2. Hi Vickie, I had my stroke almost 17 years ago when I was 39 in 2000. In 2004 I was having so much spasticity(still am)that the pain was unbearable. My muscles would spasm from quads all the way down my leg to my foot. PTs were unable to move my ankle at all because my Achilles was so tight. Dr. suggested the Achilles lengthening and it was the best thing I've ever done. It helped the pain. i don't recall wearing a cast/boot for very long. But my foot still turns in on itself. Impossible to get it flat on the floor no matter what. My toes curl under too. Had the tendon on my big toe cut by a Podiatrist and that helped. Thinking of getting them all done. And seeing if he can help the foot from turning in. I wear an AFO any time I walk/stand. Hope this helps. I agree with this whole "can't" thing too. All the best. ~Beth
  3. Thanks! This is really interesting. I'd be willing to do anything at home since I can't get out on a regular basis. the article didn't seem to have any real specifics,but I'll look into it further. ~Beth
  4. I'm not sure about this. I'm 17 years post stroke with extreme spasticity,but not sure what the signs of atrophy are. What does your doctor think? Best of everything to you. ~Beth
  5. Hi Penny, I have a lot of Spasticity from my stroke almost 17 years ago when I was 39. I did try Acupuncture years ago. So long ago I don't really remember the rtesults. All I recall is that it relaxed me. I would be willing to try it again though. I'm on the most Baclofen that's safe to take and that doesn't seem to help. Horse Riding Therapy did work,but the results don't last. And Botox did nothing for me. Wishing you all the best. ~Beth
  6. Wow. This sounds really promising. My hand has been in a fist(no function at all) for 17 years since my stroke at age 39. Botox didn't seem to do anything though. I'll look into this though. So cool that you have a horse. I have done Equine Therapy and it really helped. Hope to do it again this summer. Are you on Face Book? There are some good support groups on there too. I've connmected with other survivors there too. So helpful. StrokeNet is great. I wish you all the best. And thanks for the tip! ~Beth
  7. I pray it doesn't stop also.
  8. I'd have to agree with Kelli. This sounds very promising. And I had thought this was around the time things might kick in. In my almost 17 years since my stroke I've never had that happen. Left arm,hands and fingers won't budge at all. Although,slight movement in my arm-and I need to be looking in the mirror. It does help to move the right one at the same time.
  9. Even after seventeen years I'm desperately looking for solutions,too. Many of us are. But I'd like to think that if there's something ground-breaking we'll hear about it from legitimate sources. And,yes,no two strokes are alike. For now we can just support one another and look for solutions together.
  10. I agree. If there were a "cure" to stroke we'd hear about it from legitimate resources. Not the doctor's website,with what I consider to be phony testimonials. Maybe I'm a cynic,but I just don't buy it.
  11. Hi Khalil. There was a discussion on here some time ago regarding this doctor in Florida. I thought about doing it,even thought it's very expensive($8000 at the time)and is a long trip. Some people tried it and seemed like the biggest complaint was the doctor not getting back to themand not very professional. He is a dermatologist and injects a psoriasis(Enbrel)medication for treatment of stroke. I,personally,question his qualifications. And think that if the "miracle" drug were out there we'd be hearing a lot more about it. Too good to be true. Here is another article that might help: https://sciencebasedmedicine.org/enbrel-for-stroke-and-alzheimers/ Regards, Beth
  12. hi, My left arm/hand has no function(have a lot of spasticity and hand is always in a fist) at all,since stroke at age 39 seventeen years ago. I've never tried the NEMS,but know some people have had good luck with it. mostly loosening the muscles I think. if you're on Face Book there's a good support group(Stroke Coffee House) on there. I know someone on there uses a device. you could put the question out for discussion. wishing you all the best. ~Beth
  13. Happy Anniversary bella!

  14. Happy Anniversary bella!

  15. I have extreme tone in my hand. always in a fist. Botox didn't seem to do anything for me. feel like I should be wearing a night splint. had on made,but lost it. it was so hard to get on will all that tone. now I have a Terrycloth(with metal inside) one that the OT had me order. I use ot once in awhile,but think I'd be much better off with a custom made one. most nights I wear nothing and know this can't be good. have an OT appt. coming up-will see what they say.
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