Linda Potter and Rick Hermann,
My situation and experiences are so similar to both of yours' - I'm 49,
diagnosed about 3 years ago. Like you, Linda I wanted to delay taking
Sinemet for as long as possible, and managed to for a year - starting on
eldepryl and vitamins. Everytime my neuro brought it up, I also said I'd
like to hold off longer. He said it's okay to wait, but if you get to the
point where the symptons are stopping you from living your life as you
want to - you should start Sinemet. After about a year, the stiffness
worsened and I felt it would soon interfere with my ability to work and
to drive, and I knew I had reached that point. Even though I was not
happy about it , I have to admit that I started feeling really "normal"
for the first time in years, a few weeks after starting the Sinemet.
I think you're right - you have to accept the fact that you have this
disease first, and also that it is going to change over time. But you
know best how you're feeling now, and I think you'll know also when you
need to adjust medications.
Like Rick, when the agonists came out, I also tried stopping the
Sinemet, while starting Requip, and was able to cut down the dose by
half, but not stop it completely. I now take 1/2 tab Sinemet 3 X a day
and 6 mg/ Requip. I also think it helps the Sinemet work better and
longer, and at a lower dose. I also found taking the last Sinemet at
night has helped my sleeping problems a great deal.
I also notice a difference in some of my friends and co-workers - Rick,
you described it exactly - a subtle distancing. I think it scares some
people too much, or makes them think about their own vulnerability to
disease. Some seem surprised that after 3 years I'm still doing okay.
Others though have been very supportive, willing to talk and listen, and
most of all they treat me the same as they did before I became a person
with a disease.
Linda Herman
(One reason I had to answer both of your letters)
