In a message dated 8/8/98 12:22:45 PM Central Daylight Time, [log in to unmask]
writes:

<< ; I thanked her & said how
 really helpful that would be since I had Parkinson's Disease. She gave
 me a weird look & then said knowingly, "Oh, so those are your
 GRANDchildren!" I almost laughed & I almost cried. "No," I said, "they
 really are my children. PD
 just caught up with me  >>


Joan,

Your situation made me think.  A few months ago, I was writing some  Mo stuff.
I began taking the rewritten sheets with me to church, to the Mall, to the
medical lab, etc. When the circumstances came up, I would give them out to
people.  Whether or not it did any good is another matter.

 What do you think of this?
In some contemplative moment, compose a letter to that woman, but make it
nonspecific enough to fit any inquiry by anyone.  Print and take along a
couple of these on errands in public.  When the opportunity arises, hand the
individual a copy.  On it, you could put a very short version of your story,
perhaps some helpful information for other PWP, and something about the chance
congress now has to fund a cure. (My personal sample follows below)  When
folks act non-plussed hand them a sheet and say,  "Here, this is for you.
This explains it better than we have time for now ".  Quite a few people have
relatives or know someone who is a PWP.




Hello,

This is my way to explain myself without taking up a lot of your time.

Since you are reading this, you must have noticed I am a PWP (Person with
Parkinson's Disease -- PD).
Something made me think it was a good time to give you this:

My story in brief:
 I began having symptoms at age 37.  I was a Captain in the USAF, flying F-4s
and F-16s.  Diagnosed with PD in 1981, my flying stopped immediately, but I
was allowed to continue my ground job.  In 1984, I retired from the Air Force
with an 80% disability.  I have not worked at a paying job since late 1986.

I can help:
I can help you find information, especially if you know a  family member or
friend who might be a PWP.  I belong to a PD support group, and I correspond
regularly with a large Internet based group.  I can provide some resources
he/she might miss on their own.  No one has to face PD alone.

You can help too:
There is also something you can do for the 1-2 million PWPs in the US. This
year (right now) Congress has a serious opportunity to fund efforts to find
the cure.  We would appreciate you helping us get our lives back.  At the same
time, you might save a lot of taxpayer money.  PD is dreadfully expensive.

What to say:
1.  You are interesting in saving big in the end.
2.  Appropriate the full $100 million for the Udall PD law, and increase the
NIH budget..
3.  Please hurry. Time is money. Time is life.

Call 1 (202) 224-3121 to ask for your congresspersons by name.

 If you do not know who to ask for call 1 (800) ???-????[The AARP number]


Very best regards,

William H Heitman
Day phone (618) 628-0123



Does  anyone out there know the @$#%$#@@ APDA phone #?
Regards,
WHH