A list member (CARE) has sent this story--you will recognise some names
mentioned herein!
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>Date: Fri, 29 Dec 2000 14:18:48 -0500 (EST)
>From: [log in to unmask]
>Subject: Fwd: Fw: www.timesnews.net story from Louise Wheeler
>To: [log in to unmask]
>MIME-version: 1.0
>Original-recipient: rfc822;[log in to unmask]
>
>Thought you might find this interesting.
>
>D.
>
>>The introduction to the story and a link to the full story follow:
>>
>>-------------------------------------------------------------
>>JOHNSON CITY - NET CREATES COMMUNITY OF CAREGIVERS, PATIENTS
>>
>>JOHNSON CITY — Ryan Tripp drove to East Tennessee from Ontario,
>>Canada, and stopped to see a friend every “five hours or so.’’
>>But not just any friends — all are people he met on the Internet
>>who, like himself, are living with Parkinson’s disease.
>>Tripp has been living with Parkinson’s for more than 10 years.
>>But it was just last spring that he became part of a global community
>>dealing with the same things he was — medically, mentally and
>>socially.
>>“In seven months my life has been transformed,’’ he said.
>>Tripp is one of 70,000 Internet users each week to look at more
>>than 1 million pages of information in the “patient communities”
>>at www.braintalk.org — a site created by John Lester, information
>>system director of the neurology department at Massachusetts
>>General Hospital and research associate at Harvard Medical School.
>>Lester created the site to provide support and information to
>>200 different “communities’’ for neurological disorders.
>>“The Internet is about conversations and the community that grows
>>out of that,’’ he said.
>>Lester was in Johnson City this week to speak to the East Tennessee
>>Parkinson’s Disease Support Group — at the invitation of a “cyber
>>friend,” Peggy Willocks, president of the group.
>>Also in town were Tripp and Sandy Norris, who know Willocks and
>>Lester through the forums.
>>“These people started relationships on the Web and are now meeting
>>in the physical world,’’ Lester said.
>>Lester has been interested in the Internet since its inception.
>>Also being a medical researcher, Lester began to watch, and what
>>he found out was patients and caregivers were the “real pioneers’’
>>of Internet use.
>>“So I decided I would try to build a place for communities to
>>grow and live online,’’ he said.
>>Many things have resulted from the site that began on Lester’s
>>desktop computer, including friendships, advocacy groups and
>>research.
>>People Living With Parkinson’s (PLWP) is one example.
>>A group of patients met in the forums on the braintalk site and
>>decided to organize themselves as an advocacy group — with Lester
>>and television star and Parkinson’s patient Michael J. Fox on
>>its board of directors.
>>“This represents the future of how patients and caregivers can
>>be empowered in a totally new way,’’ Lester said.
>>In less than a year PLWP has international members, has been
>>advocating for research funding in Washington, D.C., and participated
>>in a Parkinson’s Unity Walk in New York City, he added.
>>Lester said the speed of the information and the immediate accessibility
>>of support often means the only interaction for some patients
>>who live by themselves and can’t leave their homes.
>>“These online communities have saved lives,’’ he said. “I see
>>it every day.’’
>>When patients are depressed or threaten to hurt themselves, Lester
>>is paged and can trace the phone call and get emergency service
>>to the home.
>>There are some “challenges’’ in running such a project, Lester
>>said.
>>Funding is hard to come by. When Lester recently updated his
>>equipment, it was through $5 donations from thousands of Internet
>>users that resulted in nearly $20,000.
>>“But these people are not the people that need to be paying for
>>it — many of them are living on Social Security and suffering,’’
>>said Lester, explaining that he is working to get pharmaceutical
>>companies or other corporations to fund the project.
>>Getting the support of the medical community is another challenge.
>>“Ninety-nine percent of the medical community doesn’t get it,’’
>>Lester said.
>>He said medical professionals should view the Internet as an
>>opportunity to work as a team with their patients and not as
>>a threat.
>>Regardless of challenges, the project is changing lives.
>>“You feel more alive,’’ said Norris, who has been living with
>>Parkinson’s since age 20. “I no longer feel as if I’m existing
>>with PD, but that I’m living with PD and coping and helping others
>>to do the same.’’
>>
>> CLICK HERE to add your thoughts, observations, congratulations
>>or criticisms of this story in a Village Voices discussion group.
>> CLICK HERE to write a letter to the editor.
>> © 2000 Times-News. All rights reserved. This material may
>>not be broadcast, published, rewritten or redistributed.
>>
>>-------------------------------------------------------------
>>
>>Read the full story at:
>>http://www.timesnews.net/?CONTEXT=cat&id=38994&category=107&ets=1
>>
>>If you have any questions regarding this service, please mail
>><mailto:[log in to unmask]>.
>
Camilla Flintermann, CG for Peter 82/70/55
Oxford, Ohio
<[log in to unmask]>
on the web at http://members.tripod.lycos.nl/genugten/flinterm.htm
and also at http://www.geocities.com/camillahf/index.html
"Ask me about the CARE list for Caregivers of Parkinsonians ! "
And visit the CARE webring at
http://www.crosswinds.net/~caregivers/index.html
