Hi everybody,
One of the most interesting things I've found on this list is other
people's experiences with this disease. Assuming others might find my
experience interesting, here goes.
I was diagnosed in November 1988 at 48 years old. My first strong
symptom was the loss of some motor ability in my left hand. In
retrospect, I am now aware of other symptoms that I attributed to other
things, e.g., getting older. For example, around 1984 my nickname at
work was "smiley" meaning I didn't smile very much even though I've
always been a pretty cheerful guy. I now think that my facial
appearance was the result of the "Parkinson's mask." In the early
eighties I took up running and skiing and was doing well untill about
1986 when I didn"t seem to be able to progress in either sport. Chalked
that up to "old age." At the time of my diagnosis I was a lieutenant in
the New York City police department assigned to narcotics enforcement
(a really interesting and exciting job). My symptoms didn't interfere
with my duties at first. In 1989 I was promoted to captain and
reassiged to a desk job (nothing to do with the disease). However, the
disease was progressing, and I started taking Sinemet which enabled me
to function fairly well. A year later I started experiencing the
"on/off" syndrome. I informed my bosses and my subordinates of my
disease which turned out to be a good move. Everyone was very
supportive, and actually, the fact that something was wrong with me was
no secret. Some people told me they thought I had had a stroke.
In 1992 I asked my chief if I could be given a precinct command
(precinct commander is "the" assignment for a captain. If you can
handle that job, you can handle almost any other job in the department.
It is the proving ground). Somewhat to my surprise, he fully supported
me. I had delayed asking for a command because I wasn't sure I was up
to it, but I decided to give it a shot. In September 1992 I was
assigned as commanding officer of the Central Park Precinct. The park,
by the way, is a great and safe place to visit despite its reputation.
Just don't roam in the woods alone in the dark, a practice I wouldn't
recommend in any park. I was taking Sinemet CR and Eldepryl at the
time.
Being the CO of the park precinct was a wonderful experience. The
precinct is very different from other commands in that it has no
resident population, but it is an exciting place. We always had
something going on. Concerts (Pavarotti, 50,000 plus) Shakespeare,
demonstrations, NYC marathon, etc. My hours were irregular and because
my medicine only lasted about eight hours, I had to take extra medicine
to function if something came up (it often did). But I was getting
worse and my off times were unpredictable. I didn't try to hide my
condition from anyone (as though that were possible), but it was
stressful to be at a community meeting where many people didn't know me
and to go "off" suddenly. I suspect some people thought I had a drinkng
problem. Finally, during the 1993 NYC marathon, I had a real bad day
which was observed by one of the top bosses. My boss had a talk with
me, and I decided it was time to give up the command. My superiors were
very accomadating, and I was reassiged to a desk job. I stayed there
untill June of 1994 when I just couldn't handle pushing papers anymore
and decided to retire. I had ben thinking of retiring for some time,
but I was reluctant to do so because I really loved being a cop. But I
finally did, and now I know it was the proper move.
Since retiring I have kept active. I joined a young Parkinson's
support group, got this computer (mainly to do genealogy, but I also
have found many other uses for it),became a Literacy volunteer, have a
21' boat for fishing and cruising(used to SCUBA too, but had to quit),
garden, still ski some(but no more black diamonds. Went "off" on top
once), play chess, and just enjoy life. In truth, I haven't had a day
yet where I had nothing to do!
I now take one Sinemet 25/100 in the morning to get me going, two
Sinemet CR 50/200, two Eldepryl 5mg, and four Permax 25mg. I still
experience "offs," but now I just go sit down or do something less
physcical.
Question: On August 10, 1995, in the news group
sci.med.diseases.cancer, in response to a question, JK of Global Health
Information and Medical Research Institute said, "Some researchers
believe that current L-dopa treatment is addictive, causes constant
increases in dosages, which eventually leads to death caused by the
treatment." First time I ever heard that! Anyone familiar with this
organization?
In closing, just let me say I think a "Parkie" should let
family/job/friends know unless there are other compelling reasons not
to, e.g. gettig fired. Informing has worked well for me. They all have
been great. Besides, they usually know "something" isn't right! Work as
long as you can, but being retired can be a lot less strssful. Join a
suport group. Get a computer! The information available is astounding.
Stay active and in touch with people. Above all, don't give up hope. I
know this disease can be rather burdensome, but I really think good new
is on the horizon. Finally, a little cheer for those of you who
assist/take care of us. My wife has been great, but sometimes I think
she is having a harder time coping than I am. Fear of the unknown?
Maybe. Or is it because she still has to go to work while I stay home?
:) :)
Bruce Hollenbeck ([log in to unmask])
