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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>> > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: >mailto:[log in to unmask] >In the body of the message put: signoff parkinsn _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn