Joan.

You have a good point, and I think it should be very carefully, and
thoughtfully, addressed.  Michael has brought "star recognition" to PD,
giving it a recognizable face.  In our media-driven, Hollywood-enamored
society, the attention Michael has brought to the subject is important.  For
this, his efforts to fund cutting-edge research, and his willingness to "go
public", he is to be thanked a thousand times over.

Many people w/ PD are reluctant to be seen in public when they are "off",
whether bradykinetic or dyskinetic.  I am not one of those people.  I go, I
do, and I tell people that what they are witnessing is Parkinson's.  People
are ALWAYS interested, mostly very compassionate, helpful, and respectful.
True, this may be partly because I live in a small, coastal community where
life is slow relative to urban environments and, I think, people are more
relaxed and emotionally available.  I moved here 11 months ago, some 7 years
following onset, so these folks did not know me before PD.

Michael's willingness to be seen is important, and requires courage.  Yes,
he has resources far greater than the rest of us, but that difference is
surely obvious to the Public.  I have watched every interview of his, and
read every written report that quoted him, that I could find.  I conclude
that he is very well-meaning but not particularly adept at describing what
Parkinson's "is".  This is not particularly surprising.  How many PWP would
consider themselves eloquent in this regard?

I would like to make 2 suggestions regarding how to address the valid
concern you raise:

1.  We, the unseen PWP, need to write and compile our "stories" for Michael.
Both the past, the present, and our musings on the future.  We need to then
summarize what the "common experience" is for PWP, reflecting the range of
these experiences.  This summary, and copies of all the stories, should be
sent to Michael, thanking him for his efforts and asking him, as our
spokesman, to please convey the reality of our lives in all of his efforts.

2.  Each of us must find the courage to go out into the world and tell
people about Parkinson's.  This need not be an apology or an excuse or a
plea for pity.  It is a fact!  Most of the time, when I tell someone they're
"looking at Parkinson's" their first response is "You're OK" or "It's OK".
This tells me that they think that I think that I'm not OK or that "It" is
not OK...  I always tell them, "You misunderstand me.  I know I'm OK.  I'm
merely telling you so that you will know what you are seeing, and not wonder
what is going on, or if I might be on drugs.  In fact, I am on drugs!  Legal
and very expensive ones."  This honest, open approach is very effective.  It
gives people the opportunity to ask questions.  Many mention Michael.  It
gives me the opportunity to "teach" children about brain injuries and why it
is critical for them to wear properly fitting helmets when they
bike/skateboard/inline skate.  It gives me the opportunity to "teach" adults
about the effects of environmental toxins on both humans and ecosystems.  It
gives me the opportunity to say to young people that some recreational drugs
can lead to PD.

I know that this approach will be difficult for many, but if you haven't
done something similar, give it a try!  My purpose on this planet is to help
people understand about ecosystems and the Biosphere.  I am thus a
"teacher".  I have also always known that my presence in this world was
valuable.  Parkinson's effects every moment of every day and brings with it
big challenges, but PD does not define who I am.  Yes I have many many
fears, but the Gifts of Parkinson's continue to arrive to assist me...
Whether you are a teacher or not, you might find it rewarding to give
Parkinson's YOUR face.  I have found that my honesty has brought many fine
people into my life.

And then there are the Gifts...   I don't know how Michael views his
blessings, but it is very clear to me that I am a far better person now than
I was before PD.  I have learned, in my 40's, lessons that many don't learn
until their 60's or 70's, if at all.  I have learned so much about
judgement, compassion, forgiveness, and understanding that every person in
this world is doing the best they can with what they've got...  Parkinson's
derailed me from a very promising career, took with it my vigor and grace,
and has given me difficult circumstances to resolve financially.  But I
would not go back!  I am a much wiser person now, and I like myself much
more.  I have found the "thread" of my life and the work I am here to do.
Finding the resources to do it is another thing, but I will keep following
that path...  Most of all, I am no longer a Victim of Life's vagaries...

To summarize:  We choose how we will be in Life.  It's not what happens to
us, it's how we deal with it.  If we want Michael to represent us more
accurately, we must give him the information he needs.  Compassionately and
compellingly!  If we want J.Q. Public to know what our lives are like we
must go out and show them, talk to them, give them a chance to ask questions
and to find compassion within themselves.  Compassion is the fundamental
teaching of Jesus, the Buddha, Mahatma Ghandi...  What any opportunity we
have!  To help others find God within themselves!

Each of us can change the World!

I will step up to the plate and take responsibility for what I have
suggested:  I will take on the task of compiling and summarizing our
stories, if we can find some reasonable funding for me to do so.  Finances
are extremely tight for me; I lead a simple, solitary life.

Feedback?  [recognize that I might have to reply generically, rather than
individually, if this elicits a megaresponse.]

Suggestions?

And before I end this, know that I do not judge those who cannot make the
public effort I described.  I hoped only to encourage those who may need
just a little nudge...  do the best you can with what you've got...

Allow me to close with a quote from the people of Chile:  "The People,
united, will never be defeated."

and...  my "mantra"...  "Problems are opportunities in disguise!"

Today is a WONDERFUL day!

Marla




Marla L. Gillham
PO Box 343
Yachats, OR   97498-0343
541.547.4090
[log in to unmask]
----- Original Message -----
From: Joan Hartman <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, June 10, 2001 4:20 AM
Subject: Re: Michael J. Fox Wrapping Autobiographical 'Lucky Man'


> >  The actor reveals "Lucky Man" will be about why the Parkinson's
> > Disease from which he suffers, "is not a struggle and why I feel
> > that way."      Fox, adds that "in many ways, the illness has
> > been a blessing to me. It got me out of my own show-biz garbage
> > and really made me realize there are bigger things in life. And
> it's........"     He notes that dealing with the reality of Parkinson's
has
> also
> > "given me an opportunity to kind of go through my life and
> > pinpoint all the people who've really meant a lot to me and done
> > a lot for me ................. it's been nice for that."
> >
> Don't get me wrong, I've always loved Michael J. Fox and I think he's
doing
> a great job.....and I do understand when he says  that PD provides a
> "blessing" and an "opportunity" for the reasons he mentions; I understand
> that because of what's happened in my life...BUT  when I read that he says
> PD is "not a struggle", I don't understand....what am I doing every day (I
> even had to leave work it was such a struggle).......(I know I need to
read
> the book but not everyone will) ...as I struggle every day and I get
really
> concerned because it worries  me...maybe because I've been up most of the
> night with PD or maybe because I'm afraid that non-PD people will think
that
> PD isn't all that bad and that research funds/cure won't be important to
> those who can do something about it...does the public really know or did
> they forget  that Michael's had brain surgery and that he's on medication
> 24/7, has the care he needs, does the public remember he has the money to
> have the surgery/medications/care that most of us don't.........and for
> these reasons  he can function normally for the most part ....that he also
> needs his rest because of PD fatigue with sleeping being a problem....does
> the general public remember seeing  him at the hearings with Joan and
Arlen
> Specter when he was in an "off period" with dysk., sure they saw him but
do
> they remember Michael moving and jerking like he did.....what are we going
> to do to remind them....  I have people close to me who still can't
> comprehend the fact that I can be doing so well and then an half-hour
later
> doing so badly....it's hard for them to understand my movements (or lack
of
> movement) and I see them daily.....we need to let others know that PD is a
> terrible disease, that we need to have the research funds available for
the
> cure because it is such a debilitating disease and we need all help we can
> get...and most of us are struggling...daily....Good luck, Michael,and I
> can't wait to read your book.
> I'll probably be sorry I wrote this later today but at this point in time
> (four a.m.) it's okay.   Have a good day..........Joan Hartman
>
> ----------------------------------------------------------------------
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