On Sun, 21 Jul 1996 19:47:26 -0400
John Cottingham forwarded:
>This is a post from one of the participants of the Pall Stimulation study
by KUMC team of Drs. Koller/Wilkerson. Some of you may want to invite him
to join us here. He is not a subscriber....yet.
Sun, 21 Jul 1996 18:15:39 -0500 (CDT)
>To: jcott
>From: [log in to unmask] (Bill Olson)
I am not very adept or competent on our PC, bt I would like to be
>able to communicate with other Parkinsonians. Would you be interested in
>giving me some instructions.
>
> My wife can access the YAHOO server at work and has brought home
>some interesting stuff on Parkinsons, from which I got your name and
E-mail
>address. I am impressed by your computer knowledge, and the way you are
>reaching out to others.
> I have had two brain surgery operations since Jan. 4 at the KU MED
>CENTER at Kansas City, KS. The leads from electrical stimulator devices
made >by Medtronics were implanted in my globus pallidus, and I am being
observed >and tested at 3 month inervals by Dr. Wm. Koller and his research
team. I >was just the fourth operation in a series of five persons to
receive this >approach, and we are quite encouraged by the help I am getting
from my surgery.
Propbably the most help I am going to receive is a marked lessening
>of dyskinesia from medication. This is especially evident since I am able
to >tolerate enough levodopa/carbidopa and permax to be "ON" most of my
waking >hours.
>Prior to my surgries, I was having occasional nigthtmares(I would be
>shouting loudly when I awoke) ,and very little control over lashing out
with >my left arm and foot, and I tended to be "OFF" for 4-6 hours every
day. >Before surgery, I was on 11-12 Levodopa-carbidopa 25\100 and 10-11
>permax(0.25 mg.) daily at hourly intervals.The dosage has increased by 3-4
>daily. Much of my levo-carb is taken by crushing 10 pills and taking them
in >a solution of water with the addition of 2 grams ascorbic acid per
liter. I >take 60-90 mils every hour. I still go "OFF" after my supper for
2-3 hours, >but am "ON" most of the rest of most days. I avoid eating
protein-rich food >until supper time, as I am very sensitive to turning
"OFF" if I consume much >food during the day. I do snack on "junk-food such
as pretzels, potato chips >and sweet rolls through the day to keep me from
getting too hungry.
>I need to get more exercise, but it is hard to do consistently.I am
>66 years old, and retired in 1988 on disability from the US Dept. of
>Agriculture. Veterinary Services. my DVM degree from ISU, Ames, Iowa in
>1952. I spend too much time trying to keep our computers functioning......
>Dr. Wilkinson has been doing a similar procedure for tremors since
>early 1995 for people with disabling tremors. The lead is placed in the
>Thalamus and most of the people have had familial inherited tremors, but at
>least one was a man whose diagnosis was Parkinsons. His case is quite
>different from mine in that tremor was his only evident symptom, and he
>enjoys complete relief on the side that is done. We were both guests on one
>of the last shows done by Phil Donahue.
> Yours Truly,
> Bill Olson
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I wrote a note to Bill Olson, inviting him to join our group and asked him a
'lot' of questions about his procedure. He was gracious in his answer, which
I am posting below:
Date: Mon, 22 Jul 1996 17:18:25 -0500 (CDT)
From: [log in to unmask] (Bill Olson)
Sender: [log in to unmask]
To: [log in to unmask]
Subject: responding
I was pleasantly surprised by hearing from you, and also another
person offering me computer aid--both as a result of my note to John
Cottingham.This is a medium that really has a lot of potental to bring
people together. I would like to come up with an appropriate ending. Your
quotes from W.A.Ward were very good! Now, I will gladly try to answer all
your questions.I was diagnosed in 1983. My symptoms began much earlier,
perhaps 5-6 years; and I had a very noticable response 3 1/2 years prior
when I had to give up jogging because my left foot was cramping, and I just
lost power in my left leg. My arm muscles began to cramp also. Prior to
this, I had noticec a lop-sided gait with a tendency to drag my left foot.
MY decision to go for the surgery came up quite rapidly as I had a
routine appointment with Dr. Koller. When I told him my greatest need was
for medication that would not be influenced so much by my diet, He wondered
if I was on their pallidotomy list. I told him no, but I would like to get
on it. Dr. Koller suggested I go the pallidal stimulation route instead, and
I responded that would suit me fine. Of course the biggest advantage with
what I had done is that the devices can be turned off by me at any time. The
wiring can be removed if it ever causes me any problems, and I donot have
any appreciable permanent lesions.There is a man I met on the Donahue show
who had a thalamic stimulator installed about a year before who suffers from
some numb areas of face and fingers. I was warned about that possibility,
but did not end up with any problems of that kind.
I do have one reaction that has been taken care of by follow-up
adjustments at KU; and that is a mild dyskinesia was evident of my left foot
as soon as the device was turned on. I do not understand why the thing
causes this because I have had good relief from the more severe movements I
used to have.I have my stimulators tucked neatly below my collarbone on both
sides. They are quite noticable with my shirt off, but not otherwise, I have
a different feel to my head when I shampoo; with a couple bumps where the
wiring exits near the front of my skull and a couple more along the course
of the wiring behind each ear. I hardly notice the apparatus otherwise. The
battery case and the electronic works are an integral unit that will all
need to be replaced [$6,395.00] when my copper-tops run down. Previous
experience with similar devices to relieve pain indicates a possible 4-5
year battery life. They are working on a new model with a projected 10 year
battery life. Part of my routine at bed-time is turning the devices off. I
sometimes need a change of pace in the p.m. and I will turn them off for a
while asd I recline in my lift chair. The peocedure for replacement can be
done without hospitalization or general anesthsia they say.
I had a nightmare for the first time since surgery the other night.
They occured about every 2-3 months before so never bothered me too much. I
am on more medication rather than less at this point.The liquid med is made
by crushing my Sinemet pills.
Yours Truly
Bill Olson
