From: CTRVAX::NEWBROJR 7-JAN-1994 13:57:18.63
To: IN%"[log in to unmask]"
CC: NEWBROJR
Subj: RE: Hi
Dear Henry Fieglein: Thanks for you message. Each of us deals with the news
in different ways. I myself dressed it up. I defined January 30, 1993 as
THE DAY OF GREAT NAMING. I began by setting aside a floppy disk for my mac
called PD and began the process of periodic musing. I sat down down at the
first time and began the entry, "I have entered the beginning of The End."Then
I did a long set of thoughts about dying, about how one dies and whether one
can get through it without undue pain (I couldn't see how), whether one dies
of PD and what that must be like, what the disability is like to have "a
disease of stiffness." And on and on. This I did every few days for awhile--
probably a month or two. A lot got poured out.
I then had to go through a process of deciding whom to tell. I started
with the family and forced myself to call and talk with each family member. I
had to tell the same story over and over again. Then there was the university.
What to do? I finally decided to tell colleagues, my department chair, the
dean and finally my graduate student advisees.
Then I decided that I needed to get as much help as I could on as many
fronts as possible. My wife and I saw a counselor. I tracked down a
biochemist and got an analysis of my metabolism, and began a regime of food
supplements. I found a Felkenkreis practitioner and began a monthly course
of physical therapy. I was doing regular exercise at the wellness center; one
of my graduate students was a Nautilus trainer and he volunteered to train
with me on the machines once a week.
You can see what was going on. I dealt with my denial by trying to
wrestle the illness to the ground. In my case, the neurologist gave me
Sinemet right away and followed that up with Deprenyl a month later. That was
remarkable. Symptoms have lessened and I am able to carry one well.
Psychologically, it has helped that a colleague at the university who
has PD sought me out and we have lunch weekly. We talk in detail comparing
our symptoms and asking each other what to do to solve particular problems.
I would be be happy to have contact with your wife's father, if he
were open to it. I would be glad to talk by telephone (615/269-6489, that's
home) or email or letter.
Good luck. It is the beginning of the end, but the end still is
some way off. Bob N.
