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Wendy,

I'm on my way to DC to lobby for the Udall bill, but wanted to write to
you first after reading yesterday's message.  I read about your move to
Colorado before, but was unaware that you will have to move again.  Please
send along your new address when you get it.

Your attitude about PD reminds me of my own.  I, too, was determined not
to let this disease defeat me.  My goal has been to control it without
allowing it to control me.  I adopted for my motto the old Nike slogan:
Attitude is Everything. Sometimes that's not been easy, but it's been
worth the effort.

That, plus Dr. Liberman's prediction back in 1985 that this disease could
be beaten in four years, got me through the first 10 years.  I reassured
myself that a cure could be found before I progressed to the really
uncomfortable part.  I preferred not to think about the alternative,
following the advice of a wise priest who remarked that if I spent all my
time worrying about the future I'd miss out on the great parts of the
present.  I concentrated on the present, living each day to the fullest.

I did, however, make some  plans similar to yours.  When I could no longer
teach, I would
operate a Bed and Breakfast operation from my home.  I had everything set
up, but then chose to teach as long as I could to maximize my disability
retirement.  By the time I stopped working, my medication response was not
predictable enough for me to be able to operate a business.  All was not
lost, however; I moved into one of the re-finished bedrooms to keep from
waking my husband during the night with my insomniac ramblings, and I get
great pleasure from its cheerfulness.

While I still prefer not to dwell too much on a gloomy future, I am giving
it a peek now and then, and working on contingency plans.  There are still
a few tricks left in the bag: tolcapone sounds like a promising adjunct to
my medication that will allow me to cut down on my sinemet, since I'm
currently taking more than I'd like and am experiencing significant side
effects.  Researchers are currently working on developing deep brain
stimulation for symptoms other than tremor, and, barring that, fetal cell
transplants are back in favor again.  Pallidotomy is a remote last ditch
effort for me, since its effects are irreversible.  Still, if I reach that
point, I might give that a try. I'm not sure anyone will be around should
I need someone to give me meds during the night, so a nursing home may
become a necessity in the future.

This is, of course, a worst case scenario.  On the bright side, many
exciting things are happening on the research front: genetic engineering,
neurotropic factors, etc.  None of it, of course, will be possible without
adequte funding.  You DO have every reason to be optimistic, but those
reasons depend heavily on our success in Washington.

Wish us luck!

Pat