We'd like to introduce ourselves to the group, since we're new subscribers.
My husband, Dick, is 51, and has had Parkinson's for 14 years. You might be
interested in hearing about the Pallidal stimulation surgeries he had within
the past year. In November of '95 and February or '96 he had surgery at
Kansas University Medical Center to implant electrodes into the globus
pallidus area of his brain. (You may have already heard of this from Bill
Olson, who is a subscriber). The electrodes are connected to wires which run
under the skin from the top of his head to his chest, where they are then
connected to stimulators (kind of like pacemakers) implanted under the skin
of his chest. The stimulator is then programmed by experimenting with five
different variables and is set by the programmer (a nurse) to the optimum
setting. The resulting electrical stimulation in the brain interferes with
the "wacky" signals from the brain that cause dyskinesia, dys-
tonia, and to a certain extent, tremor. The principle is the same as in
pallidotomy, but this procedure doesn't damage any brain cells, and is
reversible later on if something better should arise, or if there should be
any problems caused by the surgery.
Dick had fantastic results on his right side - almost never any symptoms
at all there - and relatively good results on his left side, although with
stress he sometimes has what we call "breakthrough" tremor, and he still has
a touch of dystonia. Prior to the surgery he had had to go on disability
from his job as a high school math teacher of 28 years.
He had severe tremor in his left arm and right leg, plus a bit of dyskinesia
and a great deal of painful dystonia. He was taking a relatively small
amount of sinemet, etc., but couldn't tolerate any more because of the
severity of the dystonia and additional dyskinesia. He had progressed to
having NO good "on" times - he was "off" a good part of the time, and the
remainder of the time was "on" with dystonia. That was what made him a
candidate for this experimental surgery. (He was the third in the U.S. to
have it done). The certainly wasn't a cure, but his quality of life is
tremendously improved. We would be glad to answer any questions from anyone
who wants to know more about the surgery.
We also had the opportunity to go to New York in September, to North
Shore Medical Center on Long Island, where Dick was the first of the pallidal
implant patients to be studied for a research project there. There were two
Italian doctors who are experts on movement disorders, and who have devised
some sophisticated computer tests to measure brain function, etc. Dick spent
one day doing computer tests, and two days having PET scans. He also
performed the computer tests while in the PET scanner. The exciting thing
about our experience there was that the doctors were so excited about both
the results of the pallidal stim (Dick was the first patient they'd seen with
one), and about what they expect to learn by viewing the actual electrical
activity of the brain with and without stim. They were able to prove that
his mental function was also much improved with his stimulator on. It will
be some time before we hear the results of the study, but we're hopeful that
this will lead to new advances in treatment and understanding of what happens
in the brain of Parkinsonians.
That's enough of an introduction, I think. As I said, we'd be happy to
answer questions for those who are interested in the surgery. And many thanks
to Barbara Patterson for the welcome and the helpful instructions.
Dick and Margie Swindler ([log in to unmask])
