Very well put Linda.  The current strict censoring of this list is
destroying it.

Jaspar

>From: Linda J Herman <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: What is the Parkinsn list
>Date: Tue, 25 Sep 2001 06:40:50 -0400
>
>Dear listmembers,
>
>As you all  must have noticed there has been almost no discussion on the
>list the last few days -- at a time when people most need to connect with
>others and support one another. I would like to share a letter i sent to
>John Cottingham and Barbara Patterson a few days ago about this list and
>the role it could be playing in the healing process.  I originally
>intended to keep it private, but after reading a new   member's eloquent
>comments in response to John's "Yes or No" message, I believe this
>conversation should  be opened up. Does this have anything to do with PD?
>  Maybe.  Has anyone else noticed worsening symptoms the last two weeks?
>PD symptoms are affected by stress levels for many PWP.
>
>Following my letter is the welcome letter from Barbara Patterson that had
>been sent to all new  members to explain "What is the Parkinsn list?" I
>hope you will all read it.
>
>Hang in there, Barb.
>Best to all,
>Linda
>----------------------------------------------
>Dear Barb and John,
>As a long-time parkinsn list member who has seen the list weather it's
>ups and downs over the last 5 years, I fully understand your reasons for
>limiting list postings to only parkinson's related items, and under most
>circumstances fully support it.
>However we are under very extraordinary circumstances especially in the
>US right now. Even those who weren't near NYC or Washington and were
>fortunate not to lose anyone close have been traumatized by the attacks
>and fearful of what may happen next. At such a time, it is normal for
>people to seek out others for support. If you read anything about coping
>strategies they all mention the importance of seeking support of others,
>talking about the tragedy, sharing emotions, fears, etc. Many people have
>found some solace attending prayer services, community memorials, or just
>talking to their neighbors, friends and co-workers.
>The parkinsn list is a community in every sense of the term for many of
>us. There are also many members who are mostly isolated, perhaps due to
>their PD, and lack other support systems. Many of us have found it
>difficult to think about other issues, even about our ever- present
>diseaase. Perhaps you've noticed a decrease in postings.
>I am asking you to reconsider your decision and open the list to
>discussion about the tragedy and its aftermath. I think having this
>outlet would be important to many list members. I would add though that
>responses to postings that include any flaming, or hostile comments about
>individuals or groups should not be tolerated . I understand this may be
>diffficult for you to monitor, but perhaps by appealing to list members
>for some self-control and self-monitoring it could be workable.
>What do you think?
>Thanks for listening,
>Linda
>-------------------------------------------
>
>WELCOME LETTER from Barbara Patterson (Dec. 1999)
>
><<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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