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Dear friends, Camilla Flintermann has just sent me an off-list message about the phoning I requested from those PIEN list members who feel that calls would help me. She wrote me after having heard from a concerned CARE list member, who is an attorney. He believes that I ought to withdraw my request for phone calls of support to 207 - 287-3610 , the office of the Hearings Officer who will decide my case. Such phoning could hurt me, and backfire. It could be misunderstood It coulod be viewed as a pressure tactic, rather than as a groundswell. I had hoped that the calls might show that we are a Parkinson's community that is widespread, supportive of each other, and although not especially visible, still able to show its numbers in a very civil fashion. I also thought that with all the PAN activity to get the Udall law passed behind us, phoning sometimes is very needed to ensure our community's voice is heard. I thought honestly that some phone calls would clarify that I do not stand alone among PWP's, and that there are many PWP's who are hoping for a successful appeal to keep my much-needed 13 hours per day of at-home care, of each 24-hour period. I find it rather hard to disagree with Camilla. I always look to her for wisdom, and yet, I am anxious that we PWP's will all lose ground if muy appeal loses. SO, I guess I don't quite know what to suggest now, except that Camilla is concerned that my case not be lost, and I am very grateful to her for that concern! I hope that a few people will write , so that a consensus of " where do we go from here" can emerge. I sincerely apologize if I have suggersted doing something that overrides some of the members' personal boundaries. Ivan Suzman 51/39/36 On Fri, 19 Jan 2001 10:52:08 -0500 Camilla Flintermann <[log in to unmask]> writes: > Ivan-- I feel I should pass this warning along to you-- >