Kees,

Thank you for haring your story. I'm sure it gives many of
us hope.

Carole

--- Kees Paap <[log in to unmask]> wrote:
> 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 holidayKees,
> 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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