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Re: Welcome to new members (& reminder to long-term members)
re reminder of purpose and function of the list barbara so you are responsible for this great site that has me up at 5am reading and replying to, emails i have found it invaluable as i wait for diagnosis this is a vulnerable/scarey time for me and my family and i have found site members supportive and caring although i am miles away sometimes it is the humour as much as the medical advice and help which lifts the spirits and tickles the fancy and reduces the fear thank you judy
From: Barbara Patterson <patterso@xxxxxxxxxxxxxxxxxxx> Reply-To: Parkinson's Information Exchange Network <PARKINSN@xxxxxxxxxxxxxxxxxxxx> To: PARKINSN@xxxxxxxxxxxxxxxxxxxx Subject: Welcome to new members (& reminder to long-term members) Date: Tue, 16 May 2000 07:09:20 -0400
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 ================================================== Barbara Patterson patterso@xxxxxxxxxxxxxxxxxxx HSC 2J22 905-525-9140, ext. 22403 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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