Brief introduction:  My name is Linda.  I am 53, have been married for 32
years, have 3 children and 3 grandchildren.  I was diagnosed with PD on
December 24, 1994 (or 5 I forget).  The neurologist said "Merry Christmas,
you have Parkinson's."  Anyway he made his diagnosis based on ruling out
everything else out.  At that time my symptoms were a slight drag in my left
foot and a slight tremor first thing in the morning.  The Dr. also said that
I had cogwheeling in my left wrist.  Anyway he started me on a low dose of
sinemet and I started a different job in Austin, TX.  The neurologist in
Austin tried a number of treatment variations because I had started having
dyskenesia.  She then refered me to Dr. Jankovic's clinic in Houston.  On my
first trip there he took me off sinemet explaining that sinemet is toxic to
your body and that causes the dyskenesia.  He put me on a dopamine agonist
instead.  Well, the dyskenesia got worse (as did all of my symptoms) and in
the spring of 2001 he said I was a good candidate for DBS.  I had surgery in
Sept. 2001.  All of this time I was a very successful software systems
engineer providing support to customers all over the US.  I was working from
home 4 days after surgery when the 9/11 disaster happened.  After surgery
all was good for awhile, I had my 1st adjustment and things were great for 2
to 3 weeks then began to get worse.  Thus began a spiral of better for a
couple weeks ending in being worse.  I went from a traveling engineer to
being someone who can't walk without a walker let alone drive a car.  When
they turn the settings up too high I lose the ability to speak.  As it is
now I can talk/function best first thing in the morning.  In 2004 the
company was downsizing and I went on disability.  My neurologist says I am
one of 1% of DBS patients who have gotten worse instead of better.  I can't
turn it off without shaking to pieces but now I get adjusted ~once a year.

What I'd like to know is, has anyone else had a similar experience?  if so,
how have they dealt with it?

first off i am so sorry for your problems. i have never had this done but i
have a close friend who did and is still having troubles. he went in this
aug. went home 4 days later was fine than boom he ended back in the ER and
into ICU back to surgery again to fixt whatever had slipped..so ICU for
about a week, after readjusting he was able to come home but a month later
back in the hospital.. i agree it did stop his shakes his entire body shook,
he can now feed himself but oh my the cost of what he is still going thru.
he thinks it is the greatest but i g uess those of us who are not going thru
not being able to feed or dress yourself nothing to just being able to feed
himself was worth it...iit is hard to watch him though but he said after all
the problems he would do it again in a heartbeat..
so good luck to u and know we are here
Lee

Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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