May 10, 1999
Hi listfriends,
The last few months my PD got worse and I am ready for the surgery. I have
been very over reactive with wild days with very much dyskenesia. Between
those wild periods I went off real bad and sometimes so fast that it seemed
as if a switch was turned. After 10 years of Sinemet the side-effects are
worse than the disease. My right arm sways in all directions and my leg
starts joining the party. It took me several months to get used to the idea
of becoming a member of the "hole in the head club" . That is longer than
the time I needed for the acceptation me having PD at an age of 39. That
took me less than a day. From that moment on I tried to cope as well as
possible. My quality of life has been good till the beginning of this year.
It became worse and finally it got bad enough to go for a surgery. I lost
most of my energy, because I used my energy so fast that I run out of it,
before I even realized that I was using any.
That is not fun! To have a brain and a body that have conflicting ideas
about what to do with this collection of muscles. Something has to change
radically. Change my muscles? by training them? I tried that and I am in a
very good shape for an almost 50'er. I am strong and tough. I bowled on
April 9 and 10, for 24 hours and wasn't even exhausted. So my muscles are
okay and my brains are the target for a change.
Faye and I did some searching on the Internet (an understatement) and I had
gathered quite some information about the possible surgeries. We came to
the conclusion that the Sub Thalamus Nuclear Deep Brain Stimulation the
best possible surgery was for me. Of course I discussed this with my local
Neurologist, who came to the same conclusion and recommended Dr. Weiner
from Dallas to do this surgery. So the first step was made.
The next step was having the surgery paid for by our Insurance. Faye and I
are in the Scott & White health plan (Faye is a general surgeon, working
for Scott & White) . They have in Temple a neuro-surgeon who does the
Stereotactical Procedures. With help from some friends and my neurologist
we wrote a request to have this surgery done in Dallas. We were invited
for a meeting with the Neurologist in temple and just after I left for
Holland, we got the green light. So Faye made an appointment for May 26 and
June 4 was claimed for the surgery.
I am writing this in the airplane from Amsterdam to Houston. What I am
thinking of this surgery? People have asked me that many times. I rather
NOT think about it. I know that what will happen and I know the risks, but
I am "ready" for it. Faye answers at that same question that she is scared,
but she also knows I am "ready" for it. So we are thinking a lot about it.
We have talked a lot about it and we both know how the surgery is done. I
hope that Faye can be with me in the OR so she can support me and help me
when my English is failing on me because of the tension or other causes. I
would like her to be with me as my wife and not as a surgeon, although she
probably will see it from both sides. She really wants to be there as my
wife and care giver. She knows as no other how I react on things and what
my physical possibilities and shortcomings are.
I will know Wednesday if I will get the surgery I (we) want. I will keep
you informed about my experiences. If you have any questions or if you want
a copy of one or more of the articles we have collected please let me know.
May 26, 1999
The Wednesday came and we went full optimism to Dallas where we were late
because of roadworks. We learned this afternoon that an appointment doesn't
me am that you will be helped at the time you had an appointment. You will
be helped at the time that you arrived and put your signature. In that
order you will be helped, which can take a long time if people get in
early.. After two hours waiting we were on. When I came in I was very off,
when it was my turn I was very good. But fortunately I got dyskenetic
before I was through. Fortunately I say because I was afraid I was not
going to be treated at all. Dr. Weiner and later on Dr Dessaloms,
independent from each other made the conclusion that I was a
parkinsonpatient who was a very good candidate for a pallodotomy. I didn't
know what I heard, a pallodotomy? For a moment I was knocked out. I felt so
disappointed. A pallodotomy ? me?
Yes a pallodotomy and well because of the following reasons :
1. I am a young patient
2. I am healthy
3. I am mentally healthy
4. I have parkinson on one side
5. I am not having tremors
6. I don't have blockades
7. I have a good respons on sinemet
So 7 good reasons why I should go for the pallodotomy. I was not quite
sure yet, so we talked a little about the disadvantages. I was always
thinking that I wanted a stimulation because it was reversible. The
Pallodotomy is irreversible, but there are still possibilities for a DBS.
So after some talking I was convinced that this was the best for me.
Certainly after a few details were more explained. The most important one
was the way how they wanted to do it. They have physiologist who makes the
calculations with the help of very fine computer equipment. This method is
called : "Micro electrode recording ". I don't know exactly how it works
but it is a method with sounds, a probe, a computer and a three experts. So
I said YES.
Tuesday, June 1, 1999
Our biggest concern was that I had to go to Temple where they do the
pallodotomy for Scott & White. They have done 9-10 in the past few years
and in Dallas they did 200. Besides that the calculation method is much
better. So it were a few frustrating days. Getting the doctors in Dallas
to send a fax to the Scott & White clinic. On the other hand trying to get
S&W give me permission for having it done on Dallas. Finally, Friday
afternoon we got the fax from dallas, but unfortunately it was a Holiday
the monday after it. But we got permission to go on today !!!!!. So now we
are going trough a lot of thoughts.
Friday, June 5, 1999
I didn't sleep. I stayed awake all night. Faye slept an hour. We left the
house at 3.00 am and arrived a little for 5.00 am in the Presbyterian
Hospital in Dallas. X-rays and bloodtests were already done in Waco. We
went through the process of administration and were at 7.15 ready to place
the "crown" . The "crown" is screwed in the head with 4 screws. This hurts
a little but I was willing to accept a whole lot more pain to get rid of my
symptoms of PD. I was rolled through a few long gangways to the OR. I felt
like a robotman that can think but not move yet. I was at that moment very
off and about the only thing I could move were my eyes, looking through the
bars of the "crown". An MRI was made with the "crown".
I was so lucky to have the newest operation table which is very
comfortable for the back. I was introduced to everyone in the OR. They
gave me the choice to have a catheter of use a bottle. I have complete
control over my bladder so I went for the bottle. The lamps were warm.
First my head (the crown) was fixed on the special connecter. I was wrapped
in several layers of plastic and sheets and was not supposed to see
anything. I relaxed as good as possible and chatted a little with the head
nurse. Everyone was very nice and friendly. I appreciated that they
explained everything they did. Then the drilling of the hole started. This,
and the breaking of the skull was the worst thing, but by far not that bad
as I anticipated.
The probe was brought in very carefully. The MER was started and .....it
wouldn't work !! Many options were tried and I made some suggestions from
the table. I started to feel a little worried. At last they decided to
switch off all the electronic devices, amongst them the devices that
checked my function. One by one the devices were connected again and I was
very pleased when final ly all the devices worked a . So the procedure
started. The probe went a little deeper. They kept on trying it and when
they were both (the neurologist and the technician for the MER method)
satisfied. Then they started sending pulses through it, activating the
probe as a stimulator. I started counting 1 - 20 and backwards. Nothing
happened. A little more activity. A slight tinseling in the fingers. Not a
good result. The Probe a little deeper. Counting till my voice start
trembling. A little more. My arm went straight up in a cramp. I could;B
speak!!! A very nasty experience. Of course they saw it very fast, because
they watched me carefully. The probe went all the way out and was injected
under a slight different angle. Amazing results!! I could tap my hand !!
make the birds beck open and close !!!. The probe was replaced by a device
that made the lesions.
Two lesions were made. At a little past noon I was parked in the recover
room. But I was way to good for that. Pretty soon I was he taken to another
room, where I finally could sleep for a while. In the evening the legs
out of the bed. And after a good nights rest I dressed myself and was
walking around a service isle waiting for the scan to be made. I was
planned at 8.00 am, but a few emergencies made it later. At last I was
scanned at 1.00 PM and I could go to house. Dr Weiner had called in the
morning already.
I went home as a new HUMAN being. You can believe me as I tell you that I
cried from happiness. It was such a difference!!
Sunday, June 7, 1999
I feel great. Slept very well and I go to church to thank everyone for
their prayers. I am very well and I am not tired at all. My head is all
short hair and a shaved spot. I have ten "staples" in my head. My private
doctor will remove them.
Tuesday, June 8
I played table tennis last night. I also went to the driving range. Tonight
I go bowling.
Tuesday, June 15, 1999
Tomorrow our trip to New York starts. So today Faye removes the "staples".
The wound is closing very nice. My shaved head grows hair again. The rest
is trimmed again.
Sunday, June 26, 1999
I feel as 7-8 years ago. I am still experimenting with medicines. I can
take less but a not sure how much less. I take 2x Tasmar 200mg (my liver
is perfect), 3-4 times half a tablet 100/25 sinemet regular and 3-4 times
a sinemet 100/25 R. 3-4 times a day 1 mg permax. I have no dyskenesia. I go
off very slow and never so far anymore. I am healthy !!! Well almost. I
hope it stays this way. My toes are cramping sometimes. I still have little
problems, but I am ready for the fight again. For you, I have another 7
years to go. To fight for your case. In October I will do the bowling
marathon again. I invite you all to Waco to bowl with me. Or organize a
bowling marathon and if you don't have somebody to bowl 24 hours........I
will do it.
I met a few of the people here yesterday. The meeting with Nina and Joe
Brown was emotional. I am a little afraid that a lot of meetings will be
emotional. But I am ready for it. I had breakfast this morning at seven,
made a walk through a part of Washington and finished this letter. Sorry
for the length and the many errors. Oh, I started this letter with :
"my mailbox is almost empty, all who sent me mail got answer (I hope so)
and all urgent things have been taken care off"
I have still a lot of messages to go 3.900 but I will not make it worse by
sending reactions to useless letters, and I promise that I will not send
useless reactions.
I love you all,
Kees
