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Janet, Thank you for sharing that. We seem to have a lot in common. You are a treasure-trove of information with humor and heart. -----Original Message----- From: janet paterson <[log in to unmask]>; [log in to unmask] <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Wednesday, June 23, 1999 9:09 PM Subject: Re: Off-times >hi all > >kathryn wrote: >>I have three very intense off-times per day that last about an hour and >>a half. I'm not a PWP with tremor but more a rigid, akinetic type. I >>can't decide whether it's best to just go prone during these times, or >>whether it's best to force myself to sit in a chair and do something >>like hold a book. My whole body seems to tremble when I do force myself >>to any activity. I am 49, on meds nearly 9 years and am tying to find >>ways to cope that are not necessarily medicine related. By the way, I >>just typed this during off-time, but now I'm a little locked into >>position at my desk with only fingertips moving...but I do always get >>moving little by slowly again. Anyone have any recommendations? > >per some advice from the late great alan bonander >i agree with his statement that both types of "off" states >overmedicated dyskinesia and undermedicated rigidity >are stressful and should be avoided or eased as much as possible > >there is nothing to be 'gained' by forcing your body through this 'pain' >the muscles are not the source of the problem here > >if a muscle is already tight or almost cramping >i can't imagine that adding more stress >would be anything but harmful to it > >in fact >if i lie down and try to 'force' my muscles to relax >[huh?] >i think the sinemet 'kick-in' is faster >sometimes dramatically so > >i'm interested that you have specific off times almost 'on schedule' >they must be related to your med or food intake > >could you try some adjustments in timing >to see if you can 'change the schedule'? > >have you seen my 'what does "off" mean?' post? >in it i describe the physical sensations in detail >[i don't have tremor either] > > >janet > >janet paterson >52 now / 41 dx / 37 onset >PO Box 171 Almonte Ontario K0A 1A0 Canada >a new voice http://www.geocities.com/SoHo/Village/6263/ >[log in to unmask]