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10-19-2007, 10:21 PM | #21 | |||
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I'm taking Dynacirc / isradapine, 10mg 2x/day I believe that's the dose Dr. Surmeier is using on the Phase 1 trial.
It works for my high BP - and I"m hoping it works on my PD.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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10-21-2007, 02:29 AM | #22 | ||
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I'm not sure I have anything more to say about it than I already have.
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10-21-2007, 06:45 PM | #23 | |||
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I finally learned the official term for why i am so fidgity - akathesia (akathisia) sometimes referred to as internal tremors, but is someone who can't sit still, gets stiff, has to move, squirms all the time. This is why I stand at the side of the room during a conference - I can't sit in the middle of a row - anywhere - I stand up at the counter at home to eat - long plane rides are agony - because I get stiff and fidget and have to to get up and MOVE!
It's related to restless leg - so the meds for RL are generally used for this. That would be Mirapex and Requip - one made me O/C and the other made me nauseous all the time. Funny geting a name to something - now after 5 years I would like some relief. So after contacting my doctor - we decided I'll try the neupro patch. It's an agonist - so I'll be watching to see if it makes me obsessive compulsive. And if that doesn't work - neurontin. Fingers crossed that something will work .. wouldn't that be nice... but we shall see.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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10-22-2007, 04:30 PM | #24 | ||
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I'm exactly as you describe, Jean B! Stand at the computer to type. Stand at the kitchen counter or a table to eat, even to read and write.
I'm wondering if you recall any injuries to either - or both - leg or foot. I have had a popping hip since a fall off a horse at age 11....among various other mishaps - stepping on a nail, sprained ankle, etc. ANyway, please keep me posted as to what works for you. Most oddly, this time last year for about 3 months I was able to sit, drive, etc like a normal person. Then everything went wacko backo and I'm still trying to halt the downward spiral. I'll let you know if I'm able to turn it around. It was lovely while it lasted! Ibby |
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10-22-2007, 08:03 PM | #25 | |||
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Ibby,
yep - I fogot that - I also stand at the computer to type - actually hop on and off a drafting stool (but mostly stand) and have the monitor up HIGH... I sprained my ankle once as an adult, but no other injuries I can think of to feet or legs. I promise to keep you informed if anything works for me. I received a script for Neupro patch -- and mailed it in to the pharmacy today. I should receive the med next week.
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Jean B This isn't the life I wished for, but it is the life I have. So I'm doing my best. |
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10-22-2007, 10:17 PM | #26 | |||
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Senior Member
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I was at the PD 50th Sympoisum, also. And it was nice to see that researchers are looking into the non-motor symptoms more.
Vicky - I know that endocrinology must have something to contribute to PD. I had thyroid surgery for a toxic goiter in 1971 - I was hyperthyroid (overactive). I could eat anything and was as skinny as a rail. Now I gain on the fumes of food! lol But it was gain weight or wear out your heart. And don't forget to add rheumatology to the study of Parkinson's. Many PWP have autoimmune disorders. How many of you have diabetes? How about fibromyalgia? And for the record, I SWEAT, too!!! Peg PS - but my Secret keeps my armpits dry! lol |
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