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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