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I thought I'd throw in 3 or 4 cents to this discussion, especially with my
new extra-sensitive outlook toward sinemet. Recent experience has led me to
an ultra-conservative approach to mainstream anti-parkinsonian meds. We all
know sinemet is no cure, I know that it allows me to do things that I
wouldn't be able to do without it, such as work, walk the mall, etc. It is a
two-edged sword though, because it also masks an underlying fatigue that is
numbing my mind and memory, and what else?  I think the bone-crushing
fatigue, which is the state of my REAL health would dictate that I get a lot
more rest than I do, but the sinemet gives me artificial energy plus keeps
me awake at night, so I end up on a treadmill leading to a chronic state of
fatigue. Not conducive to health.

Also, there's that charming prospect of hallucinations and delusions that we
are all risking when we use sinemet. After the last three weeks with Ron, I
will do ANYTHING to avoid that fate, including stop using sinemet. Thank God
the Mirapex is filling in for me, and I am day by day eliminating sinemet
from my drug list, fervently hoping that I will be able to eliminate it
totally. So far, since Janet's post and some others advice I have cut back
by half, and  am feeling MUCH better.

I don't see how we can criticize anyone for saying NO to sinemet,
considering the long term potential risks. Especially a 45 year old man with
40 years of PD to look forward to. How would you like to be on sinemet for
40 years? Not me, I am in his same boat, and it scares me to death. The only
way I can rationalize the use of any sinemet is by convincing myself that
soon something  (like a cure) will come along and rescue me from the outcome
of my choice to use it.

And Charlie, I understand your point about refusing proven treatment being
foolish, but I have a friend who now has tardive diskynesia from years of
anti-psychotics. She didn't have a choice because her ability to function is
so low, but she is paying a high price for following the established
treatment mode.

A question with no easy answers...

Kathie Tollifson
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