Parkinsn's Email List Message
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Welcome
Welcome!
You have joined the PARKINSN mailing list, also known as the Parkinson's
Information Exchange Network (PIEnet).
Please send a message to the list members (if you want to) introducing
yourself and any Parkinson's-related topics you would like.
Let me introduce myself. I am a secretary for four faculty members in the
School of Nursing, McMaster University. In September, 1992, I was
diagnosed as having Parkinson's ... hence my interest in this list.
My purpose in starting the 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 others... a way of feeling we're not alone... of
making the road of living with pd easier to bear.
I have always felt that we hear each other better on the list because we
can't see each other. Symptoms, age, colour, race, don't interfere.
The list knows no countries, has nothing to do with money... there's no
"what's in it for me?"
But these same qualities mean our words are open to misinterpretation.
Since others can't see our wry smile or wink or hear our tone of voice, a
goal of keeping it "short & sweet" can result in appearing abrupt.
Also, the same word can have different meanings and different shades of
meaning to different people in different areas of the world so care must
be taken in both your writing and your reading of the messages.
Flaming and selling are not allowed. Please send messages in plain text
only. Do not make any changes in medication or any treatments without
consulting your physician. Be kind. Be honest. Share the time
fairly.... if you think you have taken more than your share of the list
resources, you just might have.
Keep it generally related to Parkinson's. Don't abuse the generosity of
the University of Toronto's free gift of the list. Don't include all of
the message to which you are replying. Use plain text with no
attachments. Wash your hands with soap before you eat. :) In other words,
use the same common courtesy that you would elsewhere.
We need everyone's voices if we are going to make a difference in the
care and treatment of pd and the motivation and funding of research.
Speak up. Tell your story. Ask your questions. Answer questions.
Debate/argue about the answers. Debate/argue about the goals,
administration, day-to-day functioning of the list. Tell a joke... but
please don't attempt to silence anyone else's voice.
The messages on the Parkinsn list may be personal but they are NOT
private... never have been. The illusion of privacy when using e-mail is
just that: an illusion.
Never, in the 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. Folks, we're making it up as we go along, so any
rules have to be flexible.
I hope you enjoy your involvement with the Parkinsn Information Exchange
Network.
Barb
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Barbara Patterson patterso@xxxxxxxxxxxxxxxxxxx
HSC 2J22 905-525-9140, ext. 22403
(Home: 905-627-1832
Secretary School of Nursing
McMaster University Hamilton, Ontario, Canada
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===========================================================================
Barbara Patterson patterso@xxxxxxxxxxxxxxxxxxx
HSC 2J22 905-525-9140, ext. 22403
School of Nursing
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