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I finally spoke to my mother's doctor today about her appointment
yesterday.

Briefly, here's her background: My mother Joyce (69) was diagnosed with PD
2/97 then rediagnosed with striatonigral degeneration (SND) 9/98. Her PD
symptoms are mostly rigidity and slowness. Recently and suddenly her head
started slumping and is now severely flexed (her chin touches her chest) --
her doctor (a leading movement disorder specialist in NYC hasn't seen such
a severe slump). She's on Sinemet, Requip, Artane, Efforex. She's never had
a terrific (i.e., pronounced) benefit from the drugs, but clearly feels
worse (gets tremors mostly) when she tries to go off anything.

From my conversation tonight with the doctor, this is what I've learned. My
mother probably has PD (maybe SND, but the fact that she does feel a bit
better with the drugs makes this less likely). However, it's an aggressive
form of the disease, as she's between stages 3 and 4 and has been diagnosed
only 2 years. IN any case, he's assured me that clinically SND and PD are
the same (i.e., same treatment) and I shouldn't get so hung up on the exact
disease as a result.

Her spinal MRI shows some compression of the spine, but no fractures. The
doctor thinks her head slump is probably a muscular/skeletal problem not
related to PD and has recommended she see an orthopedist who specilizes in
backs. So now she is traveling to another specialist.

I have noticed how a doctor's  approach to the disease affects me and my
family. The doctor who insists that my mother has SND is also quick to dole
out a prognosis (not so good). The current doctor suspends  classifications
(unless pressed, which I tend to do), leaving open the individuality  of
the course of this disease. And I am now beginning to see just how
important this approach is. It also leaves room for hope without denial.
Most important, I don't get the impression that my mother is being written
off because of the rapid pace the disease is taking with her.


Debbie White

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