Dear list members,
I stumbled upon the Parkinsn list  almost 8 years ago. I remember my
first posting was something like -- I was just diagnosed with Parkinson's
and it has scared the hell out of me..."
Within a few hours I received  many welcome messages and  my education
about PD began. The people on this list hleped me get through those first
difficult months, they taught me about living with this disease,
convinced me that my life was not over. They inspired me to join with
other advocates in the campaign to pass the Udall bill - the first
legislation in the U.S. for Parkinson's research funding.  The people on
the PIEN were instrumental in convincing Congress to pass it, and many of
us continue to be active in Parkinson's advocacy.
Eight years later I still check for list messages the first thing every
morning and PIEN members continue to inspire and teach me. I am  thankful
for all of the good people I have come to know through this list - many
of them I count among my best friends.

I hope for our 10th anniversary we will hear from some of the
"old-timers" - especially those who haven't posted for a long time, and
also from some of our newer list members, and maybe from some who are
posting for the first time

Thank you to the international  team who has kept the list going these
past ten years - Barbara Patterson, Simon Coles and John Cottingham. You
have truly  made a difference in so many lives.

For those of you who haven't heard the story about the founding of the
parkinsn list - a little history  (excerpted from "When Parkinson's
Strikes Early"). It all started with a walk in the park....

“When she was diagnosed, Barbara Patterson knew nothing about
Parkinson’s, nor anyone who had it, and little about computers. She had
no inkling in November 1993 about the impact of her decision to start a
Parkinson’s support group on the Internet.”

Barbara Patterson relates:
“The neurologist prescribed a medication twice a day and said to come
back in a year. I read every book about Parkinson’s that I could find. (A
faculty member where I work suggested that I only read books published
within the last few years.) I didn’t know anyone with Parkinson’s.

I went to one support-group meeting locally and decided it was not
relevant to me. (It scared the daylights out of me!) I had joined a
discussion list on the Internet called NURSENET owned and operated by
Judy Norris.

A friend of Judy’s, Rina, was walking her dog in a park in Toronto and
met a woman named Margret, who was also walking her dog. Margret has
Parkinson’s and during their conversation asked Rina if there was a
discussion list on the Internet about Parkinson’s. Rina asked Judy. Judy
couldn’t find one and posted a message to NURSENET asking about one.

I replied that I would join if she found one. Judy suggested (pushed,
prodded, and urged) that I start one with her help. So we put together a
proposal for the University of Toronto. They approved the proposal, and
on 8 November 1993, away we went! Judy posted the new-list announcement
in several places on the Internet, and we started to grow.

My purpose in starting the Parkinson List was the exchange of information
about Parkinson’s. The list rapidly changed into the largest support
group I know. Besides its original purpose, the list has become a means
of feeling connected to other members…a way of feeling we’re not alone…of
making life with PD easier to bear.”

"...The Parkinson’s Information and Exchange Network (PIEN) was created
by Barbara Patterson of Hamilton, Canada, on 8 November 1993. Within 5
days, there were 46 subscribers from Austria, France, Brazil, South
Africa, Canada, and the United States. Within a year, there were 308
members from 18 countries, and as of March 2001, reflecting the unbounded
growth of the Internet as a means of communication and information, there
were 2,000 subscribers from 37 nations….”

Barbara Patterson:
“Never, in the known history of this planet, has this kind of
relationship existed. We meet in a place that has no walls. We talk to
our friends whom we have never seen. We care deeply for other members
whom we will never physically hug.…
I have always felt that we hear each other better on the list because we
can’t see each other. Symptoms, age, color, race don’t interfere. The
list knows no countries, has nothing to do with money; there’s no “what’s
in it for me.”

Happy 10th Anniversary Parkinson's Information Exchange Network!
Linda Herman

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