-----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
>