Some folks using America On Line have told me that they did not receive
E-Mail messages on the day we posted Joan Samuelson's remarks from the
Parkinson's Unity Walk in New York City, October 15th, 1995.  I apologize for
the repeat post, but for those who missed it...
 
 
"Hi everybody.
 
Thanks so much for being here.  A lot of you are personal friends and it's a
real treat for me to walk with you.
 
I don't know how many of you were in the same situation I was when I decided
to come.  People said,  "Are you going to walk?" and I said, "No I can't walk
that far." . . . because often I can't.  And it was pretty nice for me,
personally, to be here with a bunch of other people who I knew were probably
in the same situation.  Others of you probably didn't know for sure if you
could make it the whole way.  But the one thing I did know was that it would
be O.K. if I didn't, which isn't always true in the world we live in.  We try
to be equal to everybody else around us.  We want to be normal.  We want to
be able to do all the things that we used to be able to do.  It's hard to
give those (things) up and it's been real nice to be able to walk up this way
knowing that if at some point my foot started doing the crazy things it does
or if I got tired that it would be O.K.  That somehow somebody in this crowd
would make sure that I got here by the end.
 
The thing that really motivates me about this Unity Walk , the idea of it, .
. . is that it is symbolic of our strength.  We in the Parkinson's community
have a huge amount of strength . . . it's been untapped and it's time to
unleash it.  I have a saying on the wall in my home, a quote from Freidrich
Nietzsche, of all people, which states, "That which does not kill you will
make you stronger."  And I've been learning a little bit about that sort of
philosophy in the eight years that I've had Parkinson's.
 
I don't know what it was like for you but I'm sure your experience was very
similar to mine.  The day I got that Parkinson's diagnosis the floor fell out
from under me.  Everything changed that day.  I didn't know who I was going
to be in the future.  I didn't know if I would still be a lawyer.  I didn't
 know if I would be able to have the dreams that I had held at that point.
 Many of those dreams have vanished because of Parkinson's.  It was
devastating.
 
There's  a picture in my home of Mt. Saint Helens blowing up.  It was given
to me as a bit of a joke, but it's symbolic of the day I got the Parkinson's
diagnosis.  It was a terrifying day.  It remains terrifying; those moments at
three o'clock in the morning when I'm awake thinking, "What about the day
when I can't cope anymore?"  It scares me to death.
 
That, ironically, has given me strength that I never had.  I know that that's
true of those of you who are standing here and sitting here today, whether
you're the person afflicted with Parkinson's or you're the loved one who's
life turned into a complete tailspin the day you got that diagnosis in your
family.  (There are) things that you have to do now to make your family work,
to provide income because the person who was doing the work is disabled just
to make life go on.  You're very, very strong people because you have to be.
 And we can be  proud of that.
 
What we have to do is tap that now in public action.  We have to do it
together.  But unfortunately we have been invisible.  That's been true for a
very good reason.  It's hard to live with Parkinson's.  There are all sorts
of things that we have to do just to survive that everybody else in this
country, who doesn't have this condition, simply does not have to think
about.
 
Our lives are very hard.  That's just the way it is.  But we have to reach
inside ourselves to find a little more time and energy to make ourselves
public because we deserve a cure.  We deserve attention in Washington and
around the country.  We deserve to have people in the United States
understand the affliction of Parkinson's.
 
When we started working with the Parkinson's Action Network in Washington
five years ago nobody knew what Parkinson's was.  And if they thought they
did they were wrong.  They thought, and many still think, you know this, it's
a benign disorder.  "Oh, you have that drug, don't you? Oh, you're O.K."
 They see us in public when our Sinemet is working and so on.  They say, "Oh
I know somebody with Parkinson's. He looks fine."  And they do feel fine . .
. that day or that particular ten minute stretch.
 
Some people think that they don't have to dig into their pockets for
Parkinson's research.  Some congressmen think that they don't have to support
the Morris K. Udall bill which would expand Parkinson's research in the
Federal government.  They think it's just not that important.  They think
it's not as important as curing AIDS or Breast Cancer or Alzheimer's.
Well they think that for a good reason.  They think that because people with
Alzheimer's and Breast Cancer and AIDS have made it their business to get to
Washington, to be in the public, to talk about how terribly hard it is to
have that disorder. . . and it is.  They get people talking about it and
thinking about it and crying about it and worrying about it.  And it produces
results.  Those diseases get far more money per patient from the Federal
government.  They raise far more money from the private sector from peoples'
pockets for research.  They're getting results with their medical research.
 
Well we're getting results because our science is so advanced.  I'm sick of
scientists coming up to me and telling me,  "Don't worry, we've got
tremendous potential . . . if we have the money for research."  I want that
money to be in their pockets so they can hire the additional people for their
labs and they can do the experiments.  We deserve that.  We need that.  And
unfortunately, nobody else is going to do it for us.
 
The other quote I have, and this one I've got framed on my desk in my office
is from Mother Theresa. It says, "Don't wait for the leaders, do it yourself,
step by step."  Well sometimes our 'step by steps' are necessarily slow.
 Like on this walk, it was very slow at times and it was very deliberate.  We
kept moving.  And that's what we have to do, we have to keep moving.  We have
to do everything we can to make ourselves visible, to have Washington know
that we're here, to care about us, to give us the kind of money we need for
research. We deserve that and we have to do the work to get it done.
We have sample letters for you to send to your congressmen and senators
asking them to support the Morris K. Udall Parkinson's Research bill.  This
is the first bill in history that is for us, that will expand Parkinson's
research, that will give it the kind of attention and energy that it needs
and deserves and get us that research so that we can benefit from it, not
some future generation of people who haven't lost eighty percent of their
dopamine cells yet, but we, so that we can benefit from it.
 
Everybody here can do something.  Our lives are hard.  But everyone of us can
do something.  If it's just one letter; if it's just one signature on a
petition; if it's one phone call it will make a difference.  I'll give you an
example.  I have here a Fed-ex package from Senator Alfonse D'Amoto which is
a letter supporting the Unity Walk and saying it's wonderful, but Senator
D'Amoto is not a supporter of the Udall Bill yet.   He should be.  Senator
Moynihan is not yet a co-sponsor of the Udall Parkinson's Research bill.  He
should be.
 
We do have about 95 senators and congressmen which is terrific. (115 as of
December, 1995)  People here and people around the country have worked very
hard to get those supporters.  We can be very proud of that, but we need more
because we want that bill to get going so that we can get it passed this
year.  So if you haven't written your congressman and your two senators
that's the first place to start and then just do everything you can.  With
everyone doing what they can everybody in this country is going to know how
awful Parkinson's is and they're going to get rid of it soon.
 
Thank you."
 
 
Let's make the 1996 Parkinson's Unity Walk a Morris K. Udall Bill Victory
Walk!
 
-Ken Aidekman