Dear Joan,

I am just removed from a conversation with my Uncle Ron, a veteran of the
war against Parkinson's Disease as he was diagnosed 6 months after moi.  He
is as selfless as one can be.  He always says how he thinks that I am the
one who got a raw deal because of my age at onset.  I think it really is one
of perspective.  With a chronic illness the only person who can relate the
frustration and the burden of waking up every morning with the spector of
another day in the shackles of PD or whatever the illeness may be is that
person.  No, not any other person with Parkinson's or MS or ALS or
Huntington's Chorea or Wilson's Disease or Alzeimer's Disease or Cancer or
AIDS  or any other malady can feel the depth of depression, the isidious
nature of symptoms, or walking the tightrope of asking for care and not
asking too much of a care giver, is THAT PERSON.

I have to remind myself that it takes just as much courage (Dennis Green you
are the MAN!) to say no to Pallidotomy, Thalamotomy and Deep Brain
Stimulation as it does to subject yourself to the uncertain results by going
ahead with it.  It does bring out the best in people.  But the sad flip side
of that is the state of the union on Parkinson's and other  diseases.  We
are vigilant in our approach toward funding a cure.  That is greatest hope
of all.  However, there is still a strong need to give these people the best
possible care available.  I am reminded of the treatment plan sent by Bob
and Joy Graham from down under.  A plan that would bring sense to a health
care industry presently searching for answers through economic means instead
of humanitarian values.  There are people on the right track and their are
people only with an agenda.  I am not criticizing any of the efforts to
secure funding for research, I too am in need of a cure.  However, we need
to use compassion, tact, savvy, ingenuity, grit, determination, resolve,
reservation, calm, respect, animation , awareness, education, imagination,
friendship, understanding, and love.  I know I left something out but you
get the idea.

"I have a dream" is considered by many to be an idealogue's approach.  They
say you have to be pragmatic.   I thought pragmatism meant to be practical.
What is more practical than using the old cliche approach, "Treat others
with the respect and regard that you expect from them."  I am enthused about
the money made available through the Morris K. Udall Act,  but I implore you
to remain focused on other needs while we wait for a cure.

Joan, you will get advice you deserve and need from this tremendous
community of communicating and collaborative souls.  I'll start by asking if
you have tried any anticholergenics for your tremor.  There are also
surgical options you can consider if you want.  I wish you the best in your
battle with this humbling and relentless robber of any semblence of
normality.
Regards,
Greg Leeman 37/7
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-----Original Message----
From: JoanD1234 <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Sunday, March 15, 1998 6:46 AM
Subject: Tremor


>I am getting more and more discouraged with my inability to control my
tremor.
>My present trial is with Requip.  If anything, it has increased the tremor.
I
>am still on the Starter Kit (third week) and will see the neuro again
Tuesday.
>Have any of you had any difficulty stopping it cold turkey?  Must I cut
down
>slowly?
>   Have any of you had a severe tremor and been able to control it with
drugs?
>I'm getting discouraged and feel like giving up but I can't do that because
I
>will still have the tremor.  Up until recently it has been a tremor I could
>live with, but it's not anymore.  I just want to find something that works
and
>does not at the same time turn me into a zombie.  Please help!
>   Thank you.
>Joan
>