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Janet and Jane. Jane Thank you so much for the expert view on this. I didn't represent the survey as anything more than this. If people want I will continue to push for responses until after the new year. Janet I wrote a long response to you and when i went to spell check it the mail program crashed and I lost a half hours work.. Let me at least summarize here. You are confusing questioning based on anecdotal information and trying to get information with an attack on the list and Barb Pattern which it is not. Questioning about whether people thin there is a problem I believe is helpful. and in the spirit of your challenge to help Barb, I'm going to let your subtle (or not so subtle) personal attack go by for now (on my motivation and LIST "patriotism" except to say that looking at problems and trying to cone up with solutions is not looking a gift horse in the mouth. It is appreciating that gift that is received and showing caring for it and its welfare. Not acknowledging that the horse's teeth may be decayed is far more irresponsible. Barb can speak for herself and if she sees what I am doing as disloyal or out of bounds I am sure I will hear from her. In the mean time don't polarize a well intentioned effort. If you think I have a hidden agenda I'd love to hear it. Maybe I have a financial interest in the outcome. I sure see why one person wrote after expressing his views. Please don't use my name or someone will crucify me . janet paterson wrote: > hi again charlie > > At 11:05 1998/12/18 -0600, you wrote, in part: > >Well here it is- the results of the survey... > >A few words of caution. This is Not a Scientific survey. > >It is reflective of the opinions of only those that answered > >it. It is reasonable data for what it is. It is not a vote > >and carries no authority. > > i am not a survey expert > but i suspect that your 'results' are skewed > and do not reflect the list as a whole > - only those motivated to answer your call > > 50 out of 1600 members = 3% of the total membership > can hardly constitute a basis for anything > > since the vast majority of members did not respond > can we conclude from the 'silent majority' that > they think your survey a waste of time? > > we are 1600 people with 1600 opinions > > however, > the 'exploded' numbers have never been explored > i.e. the off-line individuals and pd support groups > that are 'fed' info from this list by generous sharing members > > >Barb is the final authority and I suspect that > >she has no stomach or desire for censorship. > > i don't see how there can be any 'suspicion' about it > barb patterson stated very clearly recently: > > -------------------------------- > Once again the issue of rules /protocols /appropriate > /inappropriate messages has arisen on the list. There > is NO requirement to put any identifying numbers on > one's messages. There are no "list-rules" other than > an expectation of an adult, considerate sharing of > information about Parkinson's which would include NO > selling and NO flaming. Please keep off-topic messages > to a minimum. Remember that the University of Toronto > is allowing us to provide the Parkinson list at NO cost > to us. My time is volunteered as is Janet's, Camilla's, > Joe's and everyone else who helps to keep the list working. > -------------------------------- > > >But what I would like to see it used for is for us > >to develop a consensus as what the list is and what we > >want it to be. The consensus should take into account > >the legitimate needs of the largest number of PWP's > >and Caregivers that are interested and in my view > >should be inclusive rather than exclusive.... > > charlie > i have to ask > why did you leave the list? > and why did you come back? > > we are all here for specific personal reasons > we come and go for specific personal reasons > > we are free to do so > we are free to post what we wish > [within barb patterson's gudieline] > > the internet may be an ultimate democracy > this list may be an ultimate democracy > but only to a point > > i feel strongly that all this focus on 'what's wrong with the list' > constitutes looking a 'gift horse in the mouth' > [sorry barb!] > > i would never dream of criticizing such a gift > and find it difficult to understand those who do > > if we feel the need to 'do something' > can we not find ways to assist barb patterson in her selfless work > rather than analysing ways that it 'should be' changed? > > i have an alternate survey suggestion: > > 1. what do we love about the list? why? > 2. what do we hate about the list? why? > 3. what are we going to do about these feelings of ours? > > janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada > [log in to unmask] -- ****************************************************************************************** Charles T. Meyer, M.D. Middleton (Madison), Wisconsin [log in to unmask] ******************************************************************************************