Our first woldwide chat party was a huge success last Friday. We had a total
of about 20 visitors with three from Iceland, Brazil, and Germany!
We had a blast talking about a wide range of topics such as our symptoms,
fears, and the support that the group offers.
We also discussed going to the YOPN Symposium in Phoenix this July...sounds
like it is going to be the place to be this year!
We are getting close to debuting the new YoungParkinsons.com (it is going to
be a great site filled with a lot of interactivity). You, the community,
will be charged with developing it and running it. Will be pretty cool!
My film project is slowly coming together. A big thanks to Patti Lightner
for her and her families generous contribution to get us started. We are
also in talks with a Grassroots Parkinson's organization regarding full
funding of the film. We are also looking at expanding the subject beyond
myself. Currently the idea is to also film the infamous Russ "Lightning"
Ahlstrom. http://www.unitywalk.org/na_russell.shtml
We will also be asking for all of you to send your photos in for the film
project so we can create a collage of PWP for the film.
If you are not aware of the project here is a loose overview:
"OFF"
Young Onset Parkinson's Disease
The film will be a combination of Parkinson's through as experienced through
my eyes (a first person perspective) and through the eyes of others I come
in touch with. We will touch on on the basics (tremor, rigidity,
bradykeneis, masked face, slurred speech, etc) but also want to bring out
the non-discussed issues like sex and gambling addictions which as you are
aware are a huge issue within our community. We are working with my doctor,
the dynamic Dr Jill Marajama-Lyons (author of
http://www.youngparkinsons.com/amazon.htm
http://www.youngparkinsons.com/amazon.htm) and would like for her to do a
brief explanation of the disease at the start, or explain the disese as
symptoms occur during the film.
Our intention is not to make a political or a "poor me I have Parkinson's"
film but a film that will show the good, the bad, and the humourous side of
Parkinsons .
The intention of the film is to let both current and future Parkinsonians be
aware that there is life after diagnosis. It is not the end of the world but
the beginning of a new world. We want to show that Parkinsonsians are not
limited to being on disability, that they can do anything if they put their
mind to it and stop sitting around waiting for the "miracle cure" that is
coming in five years for the last twenty years.
We will show the challenges that Parkinsonians are faced with daily and how
to "Accomadate Without Surrender", As Russ Ahlstrom and SYdney Dorros would
say. We will film me in bed with my feet going nuts, sleeping, night
walking, showering, grooming, dressing, cooking, eating, driving, etc etc
... He will move in with me for a few weeks documenting every bout of
dystonia, dyskenesia, rigidigty, and bradykenesia. We will do the same for
Russ as well.
My filmmaker, Tim Costello, is a good friend and wants to help us raise
global awareness with this project. He has done several films and did the
2003 YOPA PSA (www.youngparkinsons.com/psa.htm) which saw airtime in various
states.
We are puttting packets together for potential sponsors. The packets will
contain some of Tims short films, the YOPA 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.
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.


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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