At 01:56 PM 8/10/96 -0400, you wrote:
>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
>[log in to unmask]
>


Dietmar:

I am 63 years old and my PD was diagnosed in 1977 when I was 42.  I was looking
for full time work because my husband had died the year before and I had two
teenagers, 14 and l7, who had college and other expenses before them.  I was
substitute teaching at the time, but had no benefits, and full time teaching
jobs just were not available at that time in this area.

I was fortunate enough to get a job with a Federal agency, Housing and Urban
Development where I stayed fot 15 years before retiring on disability.  For
several years most people were unaware of my disease.  I was able to drive
and travel almost normally.  I was careful about drinking coffee while on
the job
because occassionally my hand would shake and I usually got some kind man to
help me on with my coat.  I always traveled light so that I wouldn't have a lot
of luggage to handle.  As writing became more difficult (this job required a lot
of note taking) I made out forms back in the office which required only yes or
no answers and eventually I bought a small battery run typewriter that I
used when out in the field.

Suddenly, I began to experience freezing at inconvenient times, and it got to
the point of interfering with my work.  After about l2 years, the Office
took me off travel status and gave me a job in which contacts were done by
phone. The office did everything possible to let me work.  I was one of the
first people in my division to have their own personal computer and this
simplified my paperwork.

However, getting downtown became a real problem.  I would have to let two or
three subways go by because I couldn't move fast enough to get on them.  Then
sometimes I would have to sit in the car for 30 minutes to an hour waiting
for the medicine to kick in so I could drive the rest of the way home.  Work
days
became 12 to 14 hours long from the time I left in the a. m. until I got home
at night, so finally I retired.

I'm glad I worked as long as I could in some respects as I enjoyed the people I
worked with and I also didn't have time to feel sorry for myself.  On the
other side, I regret working as long as I did.  Because my job used so much
of my energy I was forced to give up some activities that I also had found
pleasure in such as volunteer work.  I also put some things off, thinking I
would do them in the golden years of my retirement.  Instead I find myself
unable to do those things--I waited too long.

I think you have to carefully consider what is best for you realizing that
the progression of the disease is an unknown and that any decision you make
may not
work out as planned.   Unpredictability is the name of the game.


Joan
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