Dear Helen,
I'd be happy to answer any questions you have. I went to my family
dr in May of 1992. He immediately sent me to a local neurologist. I was so
scared that I had a brain tumor because my doctor was very adamant about me
doing this as soon as possible. The things that were happening to me were :
not swinging my right arm, walking like I had a ball and chain around my
ankle, slow eating, slow getting my jobs done (owned a 200 seat restaurant
til 97. I did the Accts Pyble, the payroll, the correspondence, the filing,
three loads of towels a day, worked the front line at the grill over the
busiest hours, and helped in any dept they needed me.....dishes, getting
drinks or waiting on counter. We made our own icecream & on hot, summer
days they were lined up out the door). (I miss my work and the people
there). The other problem was my handwriting. I wrote on the blackboard by
holding my right wrist with my left hand - the a.m. and p.m. daily specials
were changed at 4 p.m. and 11:00 p.m..
I had alot of tests done by the neurologist - all of which confirmed my
PD - not a tumor. Knowing only two elderly people at the time who had P.D.,
I was really scared. One was my husband's uncle who the family fed alone and
I never met him. The other was a kind person who had to rest alot. I
didn't know half of what I know now.
I was sent to Phila. to the Movement Disorder dept. because they had
alot more contact with researchers and I was his youngest patient at the
time.
I decided to have the DBS because the dystonia in my right foot was so
bad (actually turned in when I'm OFF) and it was getting very painful - my
back - the dyskenesias. I felt embarrassed at public functions. I would
make jokes like: "I need some Velcro for my butt". But I hurt inside
emotionally. My new neurologist kept trying to talk me into a pallidotomy,
but I was afraid that it would only be done on one side and it was
permanent. Now he admits that I was right. Anyhow, my husband took me to
Las Vegas the week before to keep my mind busy. I love "Blackjack" and
"Caveman Keno". Then my mother died of breast cancer. We buried her on
Saturday and I had to get to Phila on Sunday for surgery Mon am. They took
me to surgery, said good morning, and I remember nothing except the pain i
n my legs (edema). They kept my family posted. I got to the recovery room
by 9 PM. They had shaved my head and left a tiny little tail on the back at
the bottom. Then somebody took my hair & put it into a baggie in my dresser
drawer. They said I recited the whole pledge of allegiance. I can vaguely
remember going for an MRI. It was easy because I was out of it - no
claustrophobia this time. I have to go eat supper. To be continued. Paula
----- Original Message -----
From: "Helen Coleman" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, March 03, 2002 11:40 AM
Subject: Re: Questions about doctors and study participation
> Dear Paula -
> I'd appreciate learning more about how you progressed since you
first
> realized that you had a problem that turned out to be Parkinson''s. What
> problems were you having that helped you to make the decision to have the
> DBS. If you can, please describe pre and post of the operation as well as
> the surgery itself. (Did you have to have your head shaved?)
> Would you do it all over again now that you know what you went
> through and have the results been what you had expected.
> I would appreciate the same information from anyone else out there
who
> has had the surgery. I'm trying to determine if it is something I should
> do.
> [log in to unmask]
>
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> In the body of the message put: signoff parkinsn
>
>
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