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Stroke Survivor - female
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About bella

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  • Birthday 12/29/1960

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  1. This does sure look like the same dermatologist injecting stroke survivors with a drug not meant to treat stroke. I have heard nothing but negative things about him and the "institute". there were discussions on here some time ago. He required money up front as I recall. in my opinion I'd stay clear. if it really was a "cure" I think some legitimate sources would know about it. I would need a bit more information than videos that he very well could have staged. just my opinion. ~Beth
  2. In the beginning I had a lot of the biting incidents,but as I get stronger and more used to it they are now few and far between. Thanks for the post. I do hope it can help others. ~Beth
  3. I have "left-neglect" issues. I can see on the left(right side brain stroke)but I'm not really aware of things on my left. When i I have a field of vision test done there is a deficit in a small area of my left side. It doesn't interfere with daily life. I do not drive and just wear over the counter reading glasses while at the computer or reading. My stroke was almost 18 years ago. Right carotid dissection with no known cause at age 39. All the best to you.
  4. Hi, I had massive ischemic stroke in 2000. Exactly one year late I had a seizure. Was diagnosed with "post-stroke epilepsy". On two different medications and well controlled. Seizurse were mostly visual(ocipital seizures)but so happy they are controlled. All the best to you.
  5. Elle, I'm almost 18 years post stroke. Absolutely no function of left arm and hand. extreme amount of tone: hand in a fist. I've tried Botox a few times and only once did it loosen up just a bit. effects didn't last long. also with the expense I decided to manage the tone with a new medication. seems to work so far. still no movement at all. going to see a neurosurgeon that may be able to help. he reconnects nerves and ca get movement back even years later. hoping it can work for me. all the best to you. you should be able to find many people on here that have used Botox. it's very popular. I know many of the Face Book stroke survivors use it. one friend in particular. she swears by it and along with Bioness is having good results.
  6. I,too,enjoy sitting outdoors. I have a table and chairs on my deck. I like to go out and have a snack,read,and just enjoy the nature and peace. It's wonderful therapy in my mind.
  7. I wish you well with this. Hoping it helps. ~Beth
  8. This have never happened to me. It seems like a very positive sign,though. My left hand and leg have stayed pretty much the same since my stroke 18 years ago. I hope you get your function back. Sounds like you're on your way.
  9. Hi Alan, I am almost eighteen years post stroke and my walking has a long way to go. I can walk with a cane(I,too,go without some times)and an AFO(that I must wear whenever I walk). My gait is nowhere near "normal". My left leg swings out at the hip and that's what gets me from here to there. Knee and Ankle do not bend. I see other survivors walking like I did pre-stroke and I wonder why I can't. I know everyone is different. But I can't help but feel I'm missing something. Glad to hear you get to the gym. Riding sounds great. I tried,but my left leg wouldn't stay put. I have a treadmill at home. haven't been on in awhile. It actually makes my arm sore afterwards. I have to hold onto the railing so tightly with my right arm that I've caused shoulder pain there. With treatment that seems to have improved. I don't do PT any more. Was told there wasn't any further I could go at this point. I don't want to settle for where I'm at. But not much choice. I'll continue to walk whenever I can. And keep a positive attitude. If you are on Face Book there are a few groups that I'm on that off support and suggestions also. And of course StrokeNet here is great. I'm sure you'll get more replies. I would think it's a common problem with us survivors. Wishing you all the best. Beth
  10. No experience,but sure sounds like a mistake. So sorry this happened. ~Beth
  11. Thanks so much for sharing such helpful info. I think a lot more of us deal with this than anyone knows about. And I for one enjoyed your smiley even if it was an oops.
  12. Hi, I've worn one(this is probably my 4th)since day one. My stroke was 17 years ago. I've been told time after time not to walk without it. I have such ankle weakness and it turns in(left foot is never flat on the ground)that it would be dangerous. the one I have now isn't articulated. I found those too bulky and since my ankle or knee won't bend it made no sense. the one I have now has a little "give" to it and works fine. it goes up to my knee. wish you well in whatever route you go. sounds like you've come far. inspiring! ~Beth PS. if you're on Face Book there are a couple of good support pages on there. great place to get opinions on these types of things.
  13. Hi Alan, My stroke was 17 years ago. I don'y use the cane indoors,only ouside. leg pretty much has that heavy feeling all the time. Wishing you the best. ~Beth
  14. I have a lot of spasticy in my left arm/hand from my one and only stroke at age 39 in 2000. over the years I received Botox,but didn't have a lot of confidence in the doctors doing it. I felt no relief at all. also had some in my leg. nothing. found a very experienced doctor. had the injections yesterday for fingers(that injection was pretty painful) wrist and bicep(what a bruise!). I know it should take about a week to notice anything,but I already feel something. I have absolutely no movement in that arm/hand. never had in these past 17 years. this new doctor would prefer treating it with medication. I'm already on the highest Baclofen dose. they added Dantrolene and it may help. would be easier than traveling all that way for Botox every 3 months. I'm feeling positive,anyway. All the best. ~Beth
  15. Oh boy,not this again. There are been numerous posts on this guy. Most opinions lean towards him being a fraud. insists on money(a lot)up front won't take insurance. I'm not interested in letting a Dermatologist insert an arthritis medication into my spine and lying upside down for 15 minutes. anyone can make these videos-and clearly he has). no clinical trials done. I'd be interested if reliable sources okay it.