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-----Original Message----- From: DAVID N+sandra n <[log in to unmask]> To: [log in to unmask] <[log in to unmask]> Date: Sunday, January 10, 1999 5:49 AM Subject: Re: Starting sinemet >Hello Phil, > >I'm up trying to walk out some stiffness and I have read your reply to >Sherilyn. I am 38 years old and have had the pd since age of 20. But was >not diagnosed (properly) until the age of 28 because of being so young. At >the time of diagnosis I really wasn't concerned about the whys and therefore >of taking Sinemet. At the time I was finally dx'd I was in a wheelchair >totally dependent on my parents for my quality of life. At Bowman Gray >Medical Center in Winston Salem, N.C. I was given my first dose of Sinemet. >To me, the effect the Sinemet had on my body was miraculous. Within a 30 >minute time frame I was up out of the wheelchair and walking, very slowly at >first, but happily, because it was without much assistance. I had nurses >standing by because of weakness and balance difficulties. But the shere >delight of how my body responded to this drug was a turning point in my >life. I am in my eleventh year of Sinemet medicinal therapy. I have had my >ups and downs. But have never come off Sinemet because it is the only drug >that works for me. > >I think the difference is I have two wonderful neuros that work in >conjunction with each other. My first doses of Sinemet back years ago was >just 3pills aday of whatever mg I was on. Then it changed to a combination >of CR and regular Sinemet. Then when the intake of Sinemet was increasing >along with dyskinesia I was taken off of CR and put on liquid Sinemet and >the agonist Mirapex. Along with adjusting to Mirapex and its side effects >again I have been able to decrease the intake of Sinemet. Getting back to >your reply to Sherilyn I was in my eigth year of having the disease when >Sinemet started. The benefits of taking Sinemet, to me, far outweigh the >side effects. Maybe because the suffering had already been 8 long years. I >felt like we'd (me and the docs) would cross the bridge of Side Effects when >we came to them. I know every pwp is different. And I count myself as one >of the fortunate ones as far as response to the Sinemet goes and two >wonderful neuros. I also count my blessings everyday and thank God everyday >for the years of response that I have had. > >I can hope and wish the the best in my heart for the rest of the pwp's who >are mounting in the struggle of meds vs. side effects. If you have >anything else to add or ask please fell free to E-mail me at >[log in to unmask] . We are all in this fight together. > >Respectfully, >Sandra Norris >-----Original Message----- >From: Phil Tompkins <[log in to unmask]> >To: Multiple recipients of list PARKINSN <[log in to unmask]> >Date: Sunday, January 10, 1999 3:19 AM >Subject: Starting sinemet > > >Sherilyn Sherry wrote: > >> .. symptoms .. tried to blame them on using the mouse on my >> computer ... Thought I had a pinched nerve ... right arm, shoulder >> and hand were stiff and ached. > >Hello and welcome. I had similar mouse pains and first thought it was >tendinitis. I started reading about repetitive stress injuries and >joined the "sorehand" mailing list. A physiatrist said it wasn't due >to PD and put me on physical therapy which didn't work. In the end it >helped to switch mouse hands. With hindsight I think I may well have >had tendinitis, but due to the repeated struggle against PD stiffness >and dystonia. Who am I to say? > >> .. is it better to try to get by and put off medications or >> keep trying til something makes a difference. I know all meds have >> side effects. > >By "medications" I'm guessing you mean sinemet or sinemet CR. >I'm also guessing that nothing else will work as well for the level of >symptoms you are experiencing, and that the improvement will far >outweigh the side effects. > >Some people delay starting sinemet because after 5 or 10 years it >becomes harder to maintain the balance of minimum symptoms and minimum >side effects, and after that period dyskinesia becomes more of a >bother. Now that I'm nearly out of that period I find the symptoms to >be far worse that the side effects. > >Also, I think that the 5 to 10 year period is relative to the >beginning of the symtoms, not to the beginning of taking sinemet. I >could be wrong on this point, and would appreciate someone correcting >me if so. > >Phil Tompkins >Hoboken NJ >age 61/dx 1990 >