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hi all Fri, 19 Apr 2002 09:48:31 -0400 on Gail wrote: >Ok, I know I'm supposed to know this but knowing in >my head and knowing in my heart are two completely >different things .....Edna fidgets ... and I'm frightened. > >My sister Edna Earle was diagnosed by me in 1995 and >has so far had a pretty smooth course of living with Parkinson's, >if there is such a thing, Edna is 53. > >Eldepryl and then Mirapex kept her symptoms under check >for several years, then she needed more. Her symptoms of >slowness, fatigue, shuffling walk, not swing her arms, >difficulty writing, necessitated raising the Mirapex and starting >a low dose of Sinemet in 1998. > >She had some difficulty first starting on Sinemet because >it caused horrible nausea when she first started but working >with dose, timing and foods she has been able to overcome >that problem and function very well. > >A few weeks ago I noticed Edna holding her right arm/hand >behind her back and twisting her hand around while walking. >I asked her husband about it and he said she had been doing >it for awhile. I asked Edna why she was walking with her hand >behind her back like that and she said she didn't know why. > >It's like I see it, but my brain won't take it in and understand >what is happening to her. There's a disconnect between >what I see and what I know. > >a sister, >Gail i think that you are describing a kind of chorea i.e. twisting (as opposed to dystonia, which is more like cramping and dyskinesia, which is more like jerking and tremor, which is more like shaking) which may be related to slight overdose of levodopa it would be interesting for edna to CANCAN chart a few days to see whether she can pinpoint a direct cause in re med timing interestingly, the very first parky i ever met back in 1998 exhibited the exact same movements and was equally unaware of them i tracked the med schedule myself for a couple of days and made the connection "on" or "off" "frozen" or "twitchy" "normal" or "abnormal" all states are part of my pd world nothing to be frightened of just a new development to learn how to manage says the bemused renter of a trial rolling-walker yer cyber sister janet janet paterson: an akinetic rigid subtype, albeit perky, parky pd: 55/41/37 cd: 55/44/43 tel: 613 256 8340 email: [log in to unmask] smail: 375 Country Street, Almonte, Ontario, Canada, K0A 1A0 a new voice: http://www.geocities.com/janet313/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn