Parkinson's Disease Tulip


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Old 09-08-2014, 08:05 PM #11
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pegleg pegleg is offline
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pegleg pegleg is offline
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Default Way to go!

Fiona
I have trouble with reading ( the letters jump around on the page), and I don't know if that is PD or not". I tell you this because I don't always read your posts entirely because of their length . But I read this one.

I had definitely missed your posts, so thanks for showing up and explaining. I would love to try some of your tactics. Living with, eating and breathing PD every minute. is not good for us. My household is also not conducive to PD. I stay upset over 75% of the time. Long story, but just know that I would lke to run away - far, far away.

The mucuna intrigues me. There is a big trial I've been watching in London at Kings. The trial has been goingon for quiet some time and seems promising to treat PD without the side effects that I have ( dyskinesia and dystonia).

I've had this stuff for 20 years. I'm pretty functional but gave up driving due to a recent "accident." Nobody but. I was involved. I don't know what happened, but in a split second I ran up on one of those storm drains along the road. It. blew two huge holes out of my tires, but I must have been guarded by angels. I was right in front of a service station and was able to pull over without any problems. My hubby was out of town, so my daughter and her husband helped me out in changing the tire. However, it scared me enough as to what could have - SHOULD have occurred. I took it as a warning and haven't driven since.

I need not tell you how giving up driving is synonymous to giving up independence. Mobutu now I am determined to get rid of this dyskinesia dystonia and get.back into living. I don't believe that I can go as far as you did, Fiona, but I am very proud of how far you have come. And all on your own.

Keep us posted. Glad to see you back.

Peggy
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Old 07-13-2015, 06:12 AM #12
trixiedee trixiedee is offline
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Quote:
Originally Posted by Fiona View Post
Well, finally I saw a number of alternative doctors, and one in Switzerland who said very firmly ¨You don´t have this disease, and never did, but you better get off these medications right now.¨ That was in 2010. I was on maximum doses of a lot of stuff. I had gotten off the 4.5 of Mirapex two years before by myself, and it was extremely challenging to do so. And I know about all the possible syndromes that can occur when one does this unsupervised. But there was no one with any relevant experience to supervise me.

Fiona
Fiona - which doctor did you see in Switzerland? I've just heard of a very good clinic in Switzerland and am wondering if it's the same place. Also how did he reach the decision that you don't have PD?

Trixiedee
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