Dear listfriends,

It has been more than a year ago since you heard of me (it was -I think-
when Linda and Al  were visiting me as guests for the dutch Walkaton) Since
september 1995 a lot of new friends have joined this list. I have been
lurking all the time, but didn't participate or contribute anything. I will
re-introduce myself so you know who is that silly man from Holland.

That seems a good start to me, to introduce myself as being "silly". I like
to laugh alot  and try to be funny, what -due to my small knowledge of your
language- appears to be just an attempt. I will start with "YESTERDAY".
Those we are easily bored should skip this part and read further on page *
where it says "TODAY".

YESTERDAY
I was born on november 15 of the best year after WW2 : 1949. I grew up with
the unconvenient disease called asthma. After my "normal" absence in my
schoolperiod they found some good meds and the Asthma became present but did
not cause any unconvenient long periods of disability. I studied many
evening hours, got married, became a daddy (daughter 18, son 15) and just
happy till march 1988. First I thought I had worked too hard and too much.
My boss was very ill and I had to replace him beside my own work. My GP send
me to a neurologist who told me -after some tests- that I had a
carpal-tunnel-syndrom. Not that bad that it should be operated. November
1988 I returned to the neurologist, because I could hardly use my hand. It
gave a lot of problems with writing and playing the trumpet. I had an
operation in december 1988 and it should be all better at the end of
january. It became a little better, but at the end of april I still had
problems. So I went back to my neurologist. He was on vacation. His collegue
told me -5 mins after I entered his room- that he thought of parkinsons. He
did some simple tests and another 5 minutes later he told me that he was
convinced I had Parkinsons Disease. It was  confirmed by a professor and
than I was certain.

I started to read about it. Pictures of elderly people, stories about
elderly people.
I became a member of the dutch society and saw elderly people everywhere.
In April 1992 I visited a meeting where I met some young people. I found out
that I was not unique! Although it was a deception (smile) I was very glad
that there were other young onset.

May 19 the Young Onset Parkinson YOPpers was formed. Until january 1995 I
was chairman (some periods also secretary) If you are interested what
happened during that time please ask me. It is too much to write it here.
I've been travelling all over the world and have spend every second on
Parkinsons.

I had a very bad time from january till april 1996, but since i'm climbing
out of that deep pit by myself. Optimism and strength from my believe in the
goodness that people have in them, helped me to get out of it.

TODAY :

I'm using quit a lot medicin, but try to have something left in my pillbox
every day. The best way to start a new day is to find out that I can put a
pill less in my box because it was let several days.
I try to get movement as much as possible. Take the stairs in stead of the
elevator, play volleyball twice a week  and table-tennis during the
summermonths each day in the garden.
Yet I feel I'm backing out, but new energy gets into me when I read about
new meds and people who are much worse than I am.

I'm busy all day, very busy. I sleep very bad and happens regurlaly that I
skip a night. Keep on working all night and visiting IRC sometimes to chat
with John Cottingham, Marvin Giles, Barbara Patterson and others.

What I'm doing all day?
First of all I'm gathering information about PD and all what is around it. I
started a foundation called Parkinson Information Bank International (PIBI
in holland we say PeeBee). I tried to make an estamation of all the
available information. I think the final amount of pages will be a million
and more ..
I found an Israelian software house who helped me and I helped them. They
are developing a great database-viewer and -builder. One of the elements is
an optie which is added to "Word" . It gives one the opportunity to add a
word file to your database. The viewer has great options with graphics and
statistics. I was in Israel three times this year (8 weeks), learned a lot
and had a great time!
One problem is holding the development of PIBI : lack of money. The
negotiations with the European as well as the Dutch society have not
resulted in financial support yet.

Besides the information bank, i organised (with big help of course) the
second dutch walkaton and I'm responsible for the PC=2 project in Holland.
Last but not least am I helping wherever I can, visit people as much as I can.

I enjoy life very much, am very optimistic, like to laugh a lot. I found a
way out by writing poetry (an attemp to) and by writing articles and short
stories.

FUTURE:
As expected : i'm very optimistic about the future: good new medicins are
almost free on the dutch market and many new developments will be ready
within 5 to 10 years.

I wish you all the best and hope to contribute to the list again. If you
have any questions or if you want to know more about things are wrote above
please don't hasitate, but write or call me.


Kees Paap
Oudedijk 56
3612 AC  Tienhoven
+31 346281021
+31 346281017 FAX/modem