I'm reminded that I should check now with my children from time to
time to allow them to express how they feel about my condition.
They spent all but their earlier years living with their mother (my
ex) and were teenagers when my PD developed. Although I'd seen them
weekly since then and told them what I have and what PD is, they
really haven't seemed much aware of it.  It doesn't much show when
my meds are working, and I don't see the point of bringing it up
every time I see them. I've told them more about the Udall bill than
of my own experience of being ill.  I have a sense of wanting to be
"protective", and there's more.

(Children want to be protective also, by being selective about what
they tell their parents.  I guess it's obvious where this comes
from.)

Regarding my own feelings about PD, I can think of two aspects of the
experience that I have been aware of and that have not been mentioned
in this thread.  One is loss of a sense of control. A disease with a
mind of its own has invaded me and is trying to take over and destroy
me.

The other is a sudden increased sense of mortality.  Decay has set
in.  Although I know rationally that PD seldom in itself is fatal,
it makes me aware of my physical vulnerability and that I won't last
for ever -- in fact, my time is getting shorter and shorter.

It's no small wonder that people don't want to talk about getting a
serious illness. These are very scary things.  If it doesn't seem
too morbid, talking about them helps, especially when with others
who have come further along the same route, but getting over that
first hump is hard.

I sometimes take refuge in being "philosophical".  There's something
very strange about the whole setup.  I understand how disease and
death come with having a body.  But having a consciousness that can
be an abstract spectator of these processes while depending on them
for its own limited future existence -- that's just downright weird,
to say the least, or perhaps a wonder or an anonymous gift. Who would
have thought to put dissimilar things together in such a way?

Phil Tompkins
Hoboken NJ
age 60/dx 1990