Today is the Fifth Anniversary of my Diagnosis Day. It's a day of
celebration, since I have you as a sounding board. What is your
understanding of our prognosis? How do you deal with the numbers game?
When you were diagnosed, did it play like a scene in some old gangster
movie, " Tell it to me straight, Doc. How long have I got?"
We're told that each person's experience with PD is remarkably unique.
We're told that those of us with young-onset will live for many more years.
(We're not told what the quality of that long life is likely to be.) When
my boss, and also when his predecessor, listened to my story, they both
responded (very kindly), "What's the prognosis?" In other words, how long
have I got?
The fundraiser types have to paint dramatic scenarios to shake loose
donations. Often they use five years as the limit for an independent life.
That corresponds to the point at which Sinemet becomes less effective. Now
with eldepryl, ten years may be the number. Plus it all depends -- on so
many different factors. The numbers could be dangerous if they work as
self-fulfilling prophesies.
On diagnosis day, I assumed that in five years I'd be "useless". For
practical reasons such as insurance, I needed eight years to continue at my
job. I think I can make it. But if I can't, then what?
I look back at these five years with great joy at all that I've experienced
both in spite of, but also because of PD. If I'd followed the
self-destructive impulses of those first two years, much love and laughter
and music would have been missed. My basic philosophy, from Ruth Stout -- a
garden writer! -- had always been "I want to be as beautiful and as useful
as a tomato." PD makes me look hard at what "useful" means, and whether it
matters all that much. It's time to switch vegetables: I want to be as
appreciative and aware of the light as a sunflower.
Mary Yost
47, diagnosed 10/26/90, right side drags, internal ("butterfly") tremor,
inscrutable face, micrographia, foot cramping, incurable stoicism, bouts
with the blues, anxiety mostly about becoming a "burden"
