Hi Kees:
Thatwas a very good introduction. Your advice is the best part. Never
give up and keep attempting to live a normal life as much as possible.
Cheers!
Raj
*********
----- Original Message -----
From: Kees Paap <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, July 12, 2004 6:47 PM
Subject: Introduction
> Hi everyone,
>
> It has been at least 3 years since I was an active member of this list.
Lots
> of things have changed in my life since then. A short introduction of my
> life with Parkinson till 3 years ago, followed by a little longer story
> about the last 3 years. People who don't like introduction can delete this
> message now, or skip to the end of this E-mail.
>
> It started innocent enough, a light tremor in my right hand, easy tired
and
> worse handwriting. "A Carpal Tunnel Syndrome", the neurologist said, "If
it
> doesn't pass you will need a surgery". That was not exactly what he said,
> because he was -like me- a Dutchman, but the translation is close enough.
Of
> course I got the surgery, but the symtoms didn't go away. During a holiday
> of my neurologist I got to visit with his colleague who was right with his
> very fast diagnose of Parkinson's Disease. He sent me for a second opinion
> to a professor in the north of the Netherlands, who confimed his diagnose.
> It was may 6,1989, I was 39 years old, I remember to feel relieved that it
> was not a brain tumor, but what was it then?
>
> I have learned a few things since then. It ruins your life, if you let it.
I
> didn't let it. But it has had its price. I was very active in the
> Association of the yoppers in the Netherlands and later also in the young
> onset movement of Europe. I have had my ups and downs, following my ups
and
> downs in my PD. I got divorced in 1979, but I got married again in 1998,
> with an American Surgeon. She loves me in spite of my PD and she knows
what
> PD is and does to people. I moved to the USA. We live in Waco, the center
of
> Texas.
>
> During the years my PD progressed and in 1999 I had a Pallodotomy. I had a
> lot of Dyskenesia's, which all disappeared for about a year. In the
> progression of my PD, I used more and more, and different kinds of
> medication. I have used Sinemet, Eldepryl, Parlodel, Amantadine, Permax,
> Requip and Comtan.
>
> In Januari 2002 my daughter Suzanna was born; A gift from Heaven. But my
PD
> didn't care, it got worse and worse. I didn't dare to carry Suzanna,
because
> I had fallen several times with her in my arms. To protect her I managed
to
> fell on my back or my knees. That was fine with her -she liked it even-
but
> not fine with me. I broke a rib and I still cannot crawl on my knees. I
> froze regurlaly and my Dyskenesia's got worse. October 2002 I used the
> following meds. 7 x a day Sinemet CR 50/250, 7x Comtan 200, 7x Permax
1.0
> and 2 x Sinemet 25/100. I was still freezing and had a lot Dysenesia.
>
> October 2, 2002 I had a bilateral DBS-STN. From that moment on I improved
> regurlaly. Dr Dessaloms, neurosurgeon in the Presbyterian Hospital in
Dallas
> did the surgery and Dr. Stewart, neurologist in the same hospital does the
> adjustments of the DBS-STN. I needed quite a bit of adjustments, but I
> improved slowly. Until the last adjustment. I improved very much. I am
> almost leading a normal life now. (what is normal for a 54 year old men,
> married to a general surgeon of 43, with a daughter of 2.5, who is the sun
> in many lives?).
>
> We slowly started with Sinemet, then added Amantadine, followed by Requip.
> Somewhere in the process I started using Q10. I use the following meds
now
> : 3 x Sinemet CR 50/250 mg, 3 x Comtan 200g, 3 x Amantadine 100, 3 x
> Requip 3 mg and 3 x CQ 10 400mg. Every other day or two days I break a
> Sinemet in half and take in the evening half a tablet.
>
> I gained a lot of weight (50 pounds) in the one and a half year period
> between the surgery and the last adjustment in April. Due to no movement
and
> due to a lot of rest. I sleep very well. Since April I lost 10 pounds, so
I
> have only 40 to go. I play golf again (very bad) and 2 leagues of bowling.
> Further I am working in the Yard again and doing more in the house. I
still
> have a lot to catch up, but with a little girl around it is not easy to do
> much. We have help in the mornings for Suzanna but instead of doing a lot
I
> enjoy the calm mornings. In the evenings I like to go to bed early,
because
> I am tired by 10 or 10.30, but hey I am 54. I am not in a good shape
> anymore, but I am working on it.
>
> The scientsts promised us, 3 years, ago a solution in 5 years. Now they
say
> it takes 4 years, so we made progress, only 12 years to go and we will be
> cured. I read that if they find a cure now it takes 10 years before it is
on
> the market for everyone. So in 22 years we will all be cured. Well, they
say
> DBS-STN is not a cure, but to me it makes life as "normal" as can be. I
can
> wait 22 years now :). Every year sooner is a year less with batteries in
my
> chest, although they are not the worst things that happens to a PD
patient.
> It is not a fine feeling when Suzanna stands on them, but at least she has
> something to stand on. Take care and keep up all the good work and the
> support we give each other. Don't let PD get you, but make the best of it.
>
>
> Kees Paap
> 1885 McLennanCrossing Road
> Waco, TX 76712
> tel 1 254 848 9652
>
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