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Hi Don. To Sinemet or not to Sinemet... that seems to be the question in a
lot of posts. When I was officially diagnosed  over 9 years ago the first
thing the neuro wanted to do was put me on sinemet or another med. I
declined because I was breastfeeding my daughter at the time. [That neuro
was not a good"fit" anyway] When I was ready to take meds 1 and a half years
later, I started with the dopamine agonists and after about a year or so
started on sinemet.  It was what I needed to do at the time to keep my life
on track. After about 5 years more I decided to go for a thalamic DBS for my
right side. Again, this brought me back on track for ADLs and work. I have
spent most of my time on meds forgetting that I have Parkinson's. The
reminder comes when meds wear off and I take another dose. I couldn't
imagine *not* having been on sinemet. It has improved my quality of life
tremendously.  I, like you, would rather have my Sinemet now and live as
full a life as possible. If it does mean I will reach end-stage PD sooner
(I've never seen an estimate of time - what does holding off buy you -3
months? a year? 3 years?) then so be it. Is there any guarantee Sinemet will
bring you back to normal functioning if you hold off til you're *really*
bad? Will you need higher doses because you have deteriorated for another
year? I don't know. The progression of PD is so different in different
people.

What about the alternative "stuff" that has dopamine in it - does it count
towards your "Sinemet debt"?

I'm reminded of the often repeated story of people that save all their money
being workaholics so when they retire they can 1) take that trek through
Europe that they've always dreamed of   2)buy a motor home and spend the
next year visiting  all their grandchildren   3) retire to Florida  or 4)
fill in the blank__________... only to find that one member of the couple
becomes ill or dies without having the opportunity to do the things they put
off.

A friend of mine who has a son with Down Syndrome coined the phrase
"pre-disastered". Meaning the view that since he has Down Syndrome - nothing
else bad will happen to him.  It's easy with Parkinson's to feel the same
way. Somewhere in the back of your brain you think "I won't get cancer or
heart disease or whatever - I have PD".

My favorite bumper sticker says: Enjoy life. This is not a dress rehearsal.

Gail H.  age 42 PD for 13 years

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