At 03:16 PM 11/8/96 -0500, you wrote:
>I am a 53 year old woman who was disgnosed with PD twenty years ago. I
>joined the PD Inf. Exch. Ntwk. a few weeks ago and have enjoyed exchanging
>messages with many kind individuals and am just getting enough confidence
>to send a message to the List.
>
>On-off, better-worse, up-down, forward-backward all describe my condition
>throughout the day, month, and years that I have been living with PD. It
>can be so exasperating and it would help me to know if other PWPs
>experience the same thing and if anyone knows and understands why this
>occurs.
>
>First, there is the unpredictability of the efficacy of a single dose of
>Sinemet -- Sometimes it works well in reducing or eliminating symptoms,
>sometimes it appears to have no effect at all, and sometimes it is "too
>much",, causing disturbing chorea or dyskinesia.
>
>Then there is the variance in efficacy over longer periods of time --
>One week (or month) my symptoms can be very well controlled, then suddenly
>the next period of time, my medication just refuses to do its job.
>
>Lastly, I find that my location often affects my symptoms and performance;
>i.e., Whenever I visit my parents in another town, the efficacy of Sinemet
>is predictably always very good and I function very well, even for long
>periods of time and with reduced medication. I come back to my own home
>and the on-off, up-down thing starts again.
>
>An exception to the above does occur for me from time to time which I have
>been told is quite unusual. For no apparant reason, I will suddenly have
>a period of time (days to weeks) where I am able to cut-down on my
>medications from five tablets a day (which I have had to take for years
>to remain functional) to just one or two tablets with no "off" times like
>I normally get throughout the day or week.
>
>My question is -- What accounts for these significant changes or
>discrepancies in the effectiveness of the medication? We all know that
>stress (nervousness, worry, upset, excitability) causes PD symptoms to
>become worse and often I can attribute my off times to that. However,
>whenever I have had an extremely well-functioning "up" period of time,
>whether I am at my parent's home or in my own, I cannot pinpoint any
>stress-related (the lack of stress) reasons for it.
>
>I have discussed my puzzlement over the above instances with several
>neurologists and they have not been able to provide me with an
>explanation, so I am searching...
>
>I look forward to making more Internet friends - "Parkinson Pals" - in the
>future.
>
>JANICE LONG
>
Dear Janice,
When in doubt, the obvious thing is that you are not holding your mouth right.
At least that is as good an explanation as any for many problems including why
a picture doesn't hang straight or stuff you got out of a box won't go back in,
no matter how hard you try to put it back.
SEriously the problem could be in diet [timing & what is eaten], the weather
[I'm
doing some research there myself], how full the lower bowel happens to be, and a
host of other variables....including the possibility that the Sinemet
tablets are
not sufficiently uniform to fit your metabolism [they are allowed to vary
somewhat-Do your cakes always get perfectly blended, particularly at the
bottomm of
the bowl...]
Keep track and see if you can figure it out.
WILL JOHNSTON 4049 OAKLAND SCHOOL ROAD
SALISBURY, MD 21804-2716
410-543-0110
Pres A.P.D.A. DelMarVa Chapter
63 Dx1991 Symptoms 1971
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