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Work and Parkinson

Today I would like to introduce myself in this network of
PD patients, since I think it is most important to learn from
each other - and I hope to get some advice from people
in similar situations. Let me start by introducing myself
and  "my case". Well, I am 41 years old and was diagnosed
with PD in 1990, i. e. 6 years ago. I live in Germany, in a
small town near Frankfurt. I am married 20 years and
have two children (16 and 13).

I went through the same cycle as most other patients,
particularly those of my age. When I was diagnosed,
I thought "so what?". "To swallow a drug per day, that
will keep everything under control." My job was very
demanding at that time. I worked in international project
financing in a bank and traveled a lot to many countries.
Protracted negotiations, time pressure, long working
hours...the usual life..I was 35 years old and ambitious..

Then in 1992 I realized that my physical strength was
not as before. I moved to another department with less
traveling, 3 times a year to Northern Africa for one week
each time. I still could do it, negotiations, traveling...But
the symptoms got more obvious. I was a bit stiff, my voice
lacking the strength, a bit limping.

This was the hardest time, to realize that the disease
was progressing. I did not tell anybody in my office about
the disease. Only early 1995 I realized on a mission to
Morocco that I became afraid...scared to do field trips,
scared to sit for hours in conference rooms and to talk..

I decided to go public. I applied for the official status as
handicapped person which gives me some special rights
and job security here in Germany. Then I informed people
in the bank. It was not easy to admit that I was a "social
case", that I could not perform as before. I needed more
rest and less stress. I could choose to travel as long as I
felt capable to do it. A few trips until the end of 1995 in the
company of a colleague (for support), then I gave up.

I went to a special clinic for PD and got new drugs. The
break of 4 weeks, the physiotherapy and the talks with
other PD patients helped me a lot to cope with my situation.
Although, my problem is, that I feel alone in my special
circumstances. So far I have not met anyone who is still
working full-time after 6 years of PD and is in my age group.
Most people I met resigned and lived on the pension system.

When I came back from the clinic I decided that I could no
longer work as a responsible project manager with all the
traveling and stress related to it. I could stay in my old
department and do some research and back office work.
I have the privilege to work as intense and as much as I
can do. I cannot complain. I have good social contacts and
I am active in the council of employees representatives in
our bank. Twice a day I can have a rest on a bed. I go by car
to the office and hope that I can do this job for some years
to come.

Here now comes my question to other PD patients. What is
the experience with work and PD? How many years can one
expect to do a full time office job? Is it advisable to go early
on a parttime job? What about telework at home? How do
others cope with their role as father and mother when they
have PD? I'm interested to learn from other younger PD patients.

I am in a local support group, but out of 60 members only
4 are working, the next youngest one is 15 years older than
me and his professional life is almost at it's natural end.
I think younger, working PD patients are in a special situation.
They cannot fully concentrate on their well-being and their
disease. The job and the family is a help, but also an
additional responsibility.

Dietmar Wessel
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