Hello Kees and Faye  --

In January of 2002, your wife was so kind, compassionate and helpful to me
on-line.  My husband was in the hospital with a status epilepticus seizure
(possibly from being prescribed a high dosage of amantadine which we now
know can lower a person's seizure threshold).  He was diagnosed with PD 11
years ago at age 45.  He was having a terrible time in the hospital where
they were pumping him full of Dilantin (contraindicated in people with PD).
The horror stories we've heard about that drug and Parkinson's!  I kept
asking his doctor to try another anti-seizure medication but he just simply
wouldn't do it.  When I asked the hospital doctors for a change of docs or a
second opinion, their eyes got big as saucers.  You would have to talk to
the Chief of Staff, one of them told me, looking rather uncomfortable.  I
thought to myself, am I the only person who has ever asked for a second
opinion?   Patients have a legal right to one.  Seemed like a reasonable
request to me but, boy, did I feel like I was hitting a stone wall.

Your wife, being a physician, was so kind to take time out of her busy life
at the time to encourage me that I was right to try to get that second
opinion -- because we do have a legal right to one even in the face of all
opposition.  Finally, one of the hospital doctors who was trying very hard
to help us ordered that half the Dilantin be discontinued and started
Tegretrol.  I got a referral to a wonderful neurologist 30 miles away.
Meanwhile, my husband couldn't even walk any more.  After we got home, we
stopped taking all of the Dilantin and within two weeks he was just about
back to his old self.  What a transformation!  In the hospital, his former
neuro seemed to be trying to convince me that his baseline was lying in bed
having seizures.  You've got to be kidding me, I said???  His new
neurologist titrated the dosage of Tegretol down from 1600 mg. a day to 200
mg. and he has had absolutely NO problems since.

Now it is his turn for a DBS -- primarily due to the difficulty he is now
having with the Sinemet fluctuating and the resultant dyskinesias.  His
neuro is in the process of referring him.  We are so pleased and encouraged
to hear your story.  Wonderful news indeed and we are very happy for all
three of you!!!

This is a long way to say "Thank You" to Faye for the encouragement.  I was
getting so exhausted I didn't know which way was up.  And thanks to you for
sharing the success of your DBS.  That is great!  Welcome back.

Carole and Ted (56/45/40)



----- Original Message -----
From: "Kees Paap" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, July 12, 2004 2:47 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
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to:
mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
>

----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn