Joan wrote:

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


Dear Joan,

Your letter made me thinking, since I find myself in a similar situation as you
did in 1977. Two children who should get a good education, progressing disease,
choice between job and early retirement or parttime job... That is exactly my
dilemma. I find myself squeezed in between these two poles: On the one hand my
body would need more rest and would favour a schedule with early retirement
within the next few years (I am 41 years old). On the other hand the interest in
my work, the social contacts and the rewarding feeling that I still have
something to offer, despite my PD, gives me the necessary momentum to continue
with my job.

For the moment being I have the impression I sacrifice my good hours for the
company. When I come home in the evening I am worn out. When the normal family
life starts and one should do something together with spouse and kids - no
way...for me. I am glad to have some quiet time for myself...and then going to
bed very early..Of course one can easily imagine that this is not too thrilling
neither for my wife nor for my kids. I am scared that this disease continues to
affect not only my ability to perform in my job but that also the family life
suffers from the negative effects of PD.

I would love to do a parttime job...being home at noon...to have a rest in the
afternoon..and being fit for some joint undertakings with the family. I think I
must go in this direction, sooner or later.

Dietmar