Absolutely, Linda. I have been going through Dante's
Circles of Hell getting "programmed." Surgery was 2 months
ago. I have an appt. Monday,and I think it's time to get
Medtronic more involved.
Carole Hercun

--- rayilynlee <[log in to unmask]> wrote:

> 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
> [log in to unmask]
>
>
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