Peggy thank you for the reply and I have been doing what I can with my life
being so hectic right now. If it was up to me I would quit my job and raise
awareness full time.

I have TEAM YOUNGPARKINSONS.com in place and have managed a few members on
short notice and am doing the email fundraising. We wont come close to the
$40,000k we managed last year but that is fine. There is a slight chance
that I will make it. Walmart may be sponsoring Mark Comes and myself (cross
your fingers).

I don’t need to lose any weight, cant afford to! I have to fight to keep my
weight at 130. Lately at night though I have noticed increased dyskensia in
my left leg. Drives me nuts! Guess the 5 years of SINEMET and current intake
of 1500mg+ a day is catching up on me.

So far I am able to still work full time at the Dept of Energy facility here
in Albuquerque as an IT Technician. Each day I get up and think "will this
be the last day".

Then I stumble out of bed, down a SINEMET 25/100 and a CR 50/200 with a
COMTAN and an AMANTADINE chaser, wait about an hour, climb into my truck,
barely able to turn the steering wheel and hoping the guards at the gates on
base wont stop me. They did once and said I looked shaky.

My days are long but I love the job. The federal agents I work for treat me
no different and they are patient when I can not speak. I hope to be there
for a long time.

Since I left the Young Onset Parkinson's Association (YOPA), which was a
hard thing for me to do, I have had time to recharge my batteries and think
about our plight. And I always come to the same conclusion:

The world still perceives Michael J Fox as the sole young onset!

We must change this. Two years ago I co-produced a PSA for YOPA (it can be
viewed at www.youngparkinsons.com/psa.htm It came out very good and got some
airplay on TV stations across the nation. Unfortunately we did not have the
expertise to get it out to a mass market.

Today I am working on a film with my filmmaker friend Tim Costello. It has
been in my head for 3 years and I have to get it out (not much room in
there). We are in need of funding. I emailed the various PD organizations
but received no reply. Which surprised me as I have done quite a bit for
them. I will be sending them packets in the mail with samples of Tims's past
work and an overview of the project. Maybe that will interest them. The film
will not be for profit and will be shown at the Santa Fe Film Festival. I
plan on offering it free as an awareness and understanding's piece to the
community, doctors, anyone. 
We anticipate a low dollar figure of $10,000 and my good friend and your
Patti Lightners family has got us going with a gift of $1,000. Thank you
Patti. I am thinking of posting a website about the project and adding a
donation page in hopes that the PD Community will come together and make
this a reality.
SEE BELOW:
"OFF" 
Young Onset Parkinson's Disease 
We plan on entering it into this years Santa Fe Film Festival and after that
we will be sending it to cable access nationwide, PBS, and the national
affiliates, neurologists, PDF, NPF, APDA, FOX, etc. The film will be a
combination of Parkinson's through my eyes and through the eyes of others I
come in touch with. I want to touch on on the basics (tremor, rigidity,
bradykeneis, masked face, slurred speech, etc) but also want to bring out
the things like sex and gambling addictions. I can have Dr Jill
Marajama-Lyons do a brief explanation of the disease at the start, or during
the film as symptoms occur. We want to show the good, the bad, and the
humorous side of Parkinson's and let both current and future Parkinsonians
know that life exists after diagnosis. We will film me in bed with my feet
going nuts, sleeping, night walking, showering, grooming, dressing, cooking,
eating, driving, etc etc.. The film will also have photos of the thousands
of young onset worldwide. And hopefully an appearance by my mentor, hero,
and best friend Russ "Lightning" Ahlstrom who has furthered the work of the
great Sydney Dorros. "Accommodation without Surrender" is their battle cry!
We will show the challenges we face daily and how to "Accommodation Without
Surrender". As Russ Ahlstrom and Sydney Dorros would say. We are putting
packets together for potential sponsors. The packets will contain some of
Tims short films, the YPOA Commercial, and an overview of the project. So
far Patti Lightner has given us $1,000 to start, but we will need about
$10,000 for the project.


Tom Berdine
Founder; YoungParkinsons.com
CoFounder, Young Onset Parkinson's Association
President, YOPA, 2002-2004
Diagnosed with Young Onset Parkinson's Disease in 2001

“I don’t suffer from Parkinson’s…I thrive on it.” –Tom Berdine

-----Original Message-----
From: Peggy Willocks [mailto:[log in to unmask]]
Sent: Thursday, March 17, 2005 3:49 AM
Subject: Re: Please support the cause...

Tom
I understand your need to take a rest from participation in the Unity Walk.
After your 3 years of hard work and raising so much awareness and money, you
deserve a break! But the beauty of the Unity Walk is its simplicity in how
to participate. If you an type a few names from your email and push "Send."
you can raise funding for research - and right from your home!

What I love about the Parkinsosn Unity Walk is that it divides its money up
evenly between major PD organizations and goes SPECIFICALLY to research. I
hope you stay as an active participant (I'm sure you will). If others
reading want to know more, visit www.unitywalk.org (you can search for a
particular walker once at the site and donate your funds that way - I'm
there!)

Best to you Tom! And by the way, I lost 20 lbs earlier to dyskinesias, but
boy, did I ever need to! LOL

Peggy Willocks



Tom Berdine
Founder; YoungParkinsons.com (www.youngparkinsons.com)
Co-Founder, Young Onset Parkinson's Association (www.yopa.org)
President, Retired, YOPA, 2002-2004
Diagnosed with Young Onset Parkinson's Disease in 2001
 
“I don’t suffer from Parkinson’s…I thrive on it.” –Tom Berdine

Tom Berdine
10409 Bellamah Ave Ne
Albuquerque, NM 87112
(505) 293-5612


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