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I was quite interested in Ronald Vetter's message regarding the importance of
the sharing of research and knowledge between PD support groups as I have just
become editor of the PDA of Victoria, Australia newsletter.  Much of the
material for my first newsletter came from the PD Information Network, which
I've found to be an invaluable source of research being done, advice in
handling some of the problems with medication, mobility, emotional aspects of
the disease, relationships, doctors and much more.  The internet has tremendous
potential for raising the profile of PD and the public's consciousness of the
toll it takes on so many people.  Contributers such as Barbara Yacos, Alan
Bonander, Barbara Patterson and Dr. Robert Fink are my heroes, and I am in awe
of how generous they are with their time in uploading such interesting,
informative articles; I've often thought they should get together and publish a
book on some of the articles, questions and answers, from the network so that
people who aren't into computers can take advantage of all they have to offer.
 
After my first newsletter, I was contacted by a PD Bulletin Board in New South
Wales that has recently started up and is hoping to expand into Victoria.  They
were offering many files, medical abstracts, research details for downloading.
Also, as a result of a newsletter, I was contacted by a neurologist from Perth
who was interesting in conducting research into the role of exposure to
manganese and PD.    Included in our newsletter was a letter from Fiona
Sweeney from Deakin University, School of Psychology who is investigating the
relationship between depression and PD requesting people to participate in her
study.
 
So, you see, people are communicating, but maybe not as publicly as they
should. I know that I am guilty of E-mailing individuals on the list and tend
to be reluctant to write to the whole list even though I enjoy "sponging up"
what others contribute.   Maybe we could organise a "non-lurking" day where
every member has to send a message to the list; they did this on a LM-Net list
I belonged to, and it was pretty successful in getting the shy ones to
contribute.
Celia Jones
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