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To those who persistantly email Janet Reno and other newly diagnosed Parkies of national or world-wide repute in order to invite them to join the PD Listserv Group: Dear Friends.... I believe NONE of us who subscribe to this lists should contact a newly diagnosed Parkinsonian of national or world-wide stature for at LEAST a year after their public acknowledgment of having this disease. I believe by doing so in the manner in which it has been done is commiting a dis-service to the new Parkie, AND to all your fellow parkies. In the time I've been a member of this group I've seen several famous individuals "come out" of the closet and admit publicly that they have Parkinson's Disease. And, at that time, it seems to me that certain members of our group go into a near-frenzy in an attempt to "snare" those persons and get them to join this group as well as to espouse the cause of promoting research for Parkinson's treatment and a cure by using their fame and/or notariety in that effort. I can only imagine the horror with which this veritable flood of "welcome Sister or Brother" messages are received by the newly diagnosed. They have to suddenly cope with this terrible disease and the public invasion their of private life is it is suddenly exposed to a publicity-seeking world. Along with all THAT, here comes a tidal wave of email and snail-mail messages from members of this group (along with the same type of "welcome,' no doubt, from other Parkinson's-related national associations). I shudder at their response in reading the many messages which while commisserating them about THEIR having PD, also carry lengthly personal stories and anecdotes about the AUTHOR'S PD-related life. Amongst the chronically ill there seems to be a compulsion to refer back to one's own experiences in order to justify or classify or to just get it OUT to others in a like boat. We're no different than the rest of the chronically ill in that. Yet WHY would we expect a famous person to be interested in suddenly hearing about our own PERSONAL illness and our OWN experiences with it and then to join our group? Sheeeeeesh! After all that, when this group receives no response, an ADDITIONAL contact effort is talked about on our part? Come ON, my friends! You... we ... DID receive a "response," and you're denying it. A non-acknowledgment after the huge number of messages sent from the members here IS the response! Personally, it took me several years to get my diagnosis of PD, and it took additional time to grow to accept what appeared as to me as a nightmare as being REAL. It took time for my body to adjust to the drugs, and just when it DID adjust, I began to suffer side effects from those same drugs. Eventually I had a pallidotomy to relieve those symptoms. And throughout this time span, the rest of the world when on about it's business, with myself eventually coming to terms with PD. I imagine most of you went thru something similar. WHY then, cannot the members of this group let the famous and not so famous alone when the press has invaded their life as it is? WHY is there this mad rush to "welcome" them to our "Parkie Club?" WHY does our respective and collective ego seem to DEMAND that they accept both the disease AND *US* at the same time? And when that demand isn't met, further demands are contemplated? Even tho I wouldn't recognize any of you if I tripped over you - and vice versa - I feel a strong bond and a deep love for this group as a whole and many of it's members as individuals. I recognize the termendeous effort that many of our members have put forth in confronting U.S. politicians in their home-turf in the Washingtons, D.C. policial arena in order to bring the Udall Bill to the their notice. I applaud your efforts for the remarkable job you've done. I'm fascinated at the brilliance, the wit, the inner sparkle, the temper, and the sheer wisdom of this group as it interacts. And I'm proud and honored to be a part of it. Nonetheless, I believe that somewhere something has gone a little skewed when there appears to be a need amongst some of our members to HOUND a newly diagnosed person of note to join our group and to lend their name and time to this cause. I say "ENOUGH, ALREADY!" You're OVER-estimating how eager a newly diagnosed Parkie might be to meet other persons with PD, especially in an online venue which may be as foreign as the back side of the moon to them. Many of them might see - visually - others with this disease and be frightened at what they see, yet we expect them to jump right in and embrace us? My friends, you're UNDER-estimating the COLLECTIVE clout of this group and other Parkinson's groups to bring attention to the needs of the Parkinson's community. Together we offer much, much more to the world than a Janet Reno or an Ali, because WE have the time and the determination to continue to fight for a cure. We don't NEED a "National Poster Person" to represent us! We don't NEED a public figure to say "Help these poor pathetic souls!" We DO need the newly diagnosed and the disenfranchised individuals who aren't even aware that such a group as ours exists, and who long not to be alone with the burden of Parkinson's Disease weighing them down. ENOUGH ALREADY.... Barb Mallut [log in to unmask] ---------- From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf of David Robert Austen Sent: Saturday, December 14, 1996 7:15 AM To: Multiple recipients of list PARKINSN Subject: Re: Letter To Attorney General Janet Reno--NO Response Greetings, James: I'm sure you know better than I how to handle correspondence lawyer to lawyer! May I be so bold as to suggest that it might not be a bad idea to write again, acting on the assumption that the letter somehow missed its mark? Or even phone now to ask her staff if there is any record of the letter having been received? I would then ask if I could fax it to the person who has taken my call, asking that it be hand delivered. Yes, it would be nice to have Janet Reno "on side." Good idea, James. Sincerely, David Austen ------------ On Sat, 14 Dec 1996 [log in to unmask] wrote: > The following letter was sent to Ms. Reno on December 14, 1995. I am sorry to > report we never received the courtesy of a response. A true loss to the LIST. > Maybe this year we should write to the Pope.................? > > > Honorable Janet Reno > Attorney General > United States Department of Justice > 10th & Constitution Avenue, N.W. > Washington, D.C. 20530 > > > Dear Attorney General Reno: > > As members of the legal profession, and proud of it, we take this opportunity > to extend AMERICA'S "1st Lawyer", a hale and hearty best holiday wish. For > your continued service to the people and the profession and by your courage > and honesty in recently announcing that you share our Parkinson challenge you > have honored us , "sister" Janet. We. in turn, would like to honor you by > dedicating this "We, Shaky Three, Christmas Tome" to you and again extend you > our warmest invitation to participate in our PARKINSON LISTSERVE. > > With the advent of the computer and the resulting Internet came the valuable > Listserve. Growing out of this developed the Parkinson Listserve which is > maintained at University of Toronto in Canada. Presently there are over 1000 > people on the LISTSERVE who are interested in Parkinson disease through out > the world. As a subscriber to this network and as a fellow lawyer I welcome > you. I was diagnosed in 1992 and through the help of fellow "parkies" I > have been able to keep abreast of new developments as well as acquire a > better understanding of the disease. > > As I became more familiar with this Listserve I was introduced to two other > fellow lawyers who share our common disease. The Honorable Arthur T. > Hanscum, District Judge of Laramie, Wyoming and John E. Stanfield also of > Laramie. Two fine gentlemen who you would be proud to know. For levity we > have named ourselves The Shaky Three > > Once we learned of your diagnosis of Parkinson, we collectively thought it > would be nice to let you know you are not alone and accordingly extend to you > our hand (shaky or not) and welcome you and extend you our warmest invitation > to participate in our PARKINSON LISTSERVE. > > > > Warm Regards, > > James D. Ryan > Attorney At Law > *********************************************************************** > "We Shaky's Three Christmas Tome" > > > 'Twas the night before Christmas and all thru the land > the parkies were sleeping, no jigglin their hand. > Their bodies were resting, all tucked and serene > nary affected at all by their lost dopamine. > > Gifted by quietude, the twitching reprieved, > drifting deeper to REM than one could conceive, > they appeared like the rest or so it would seem, > a slumber most welcome, then a Sinemet dream. > > The dream more than vivid, the color and sights, > were slide show presented mid big city lights. > Gold glitters and flitters cours'd thru neurotransmitters, > creating a light show for park gazing sitters. > > Yet, even considered, sweet sleep did reign king, > without any notice, myoclonus did bring > electrical charges coursing throughout every cell, > prepared to awake under parkinson's spell. > > Some begin with a twitch, others jerk or ice freeze, > now conscious, ON! OFF!, our condition, disease. > Be it onset as older or early as teen, > We leva, we dopa acetyl choline. > > Cerebellum engaging as best as it could > anticipates gaiting as well as it should. > Eyes come on open, dry drug mouth or no, > bite into one yellow and go with the flow! > > A pre-walking ritual not always the same > is often companioned by a brief waiting game; > the spirit all willing, the hope a sweet tune, > 'tis calendared mystery on descent of the moon. > > Now, full awake! the limbs, every muscle > would try to alight from the bed without tussle, > then cope with the hustle and bustle anew > and savor life's magic from fresh point of view. > > With the attitude bold, some young & some old, > we accept the progession which morn has foretold. > Now ON! then comes OFF! the shuffle, the gait, > the pursuit of life's joys cannot risk to wait. > > "ON, legs!" though they trudge and some they do freeze; > "Swing, arm!", "Shoulder, freed!" from the 'happy disease'; > Not mere 'inconvenience', nor 'happy' it be, > all goodwill is meant by this tome, shaky three. > > L'Chaim! Toward life! Kia ora tu! you; > to live in a day where Gone! is the quivver. Rid! the molasses, > the festine stand shuffle, slow typin morasses; > bid Hello! to friend shoestring, the button and brush, > even dropping cab dollars in Big Apple rush. > > Surveying our body from the head to the toe, > trusting chemical system to give us green Go! > Meanwhile, we three, touched by parkinson's plan, > do bid you peace, yuletide as life only can! > > > Merry Christmas, all!!!!...We, 3 shakeys, members of the legal profession, > and proud of it! take this opportunity to extend AMERICA'S "1st Lawyer", > Attorney General Janet Reno, a hale and hearty best holiday wish. For your > continued service to the people and the profession and by your courage and > honesty in recently announcing that you share our common Parkinson challenge > -you have honored us, "sister" Janet. We,in turn, would like to honor you > by dedicating this "We, Shakey's 3, Christmas Tome" to you and herewith > cordially extend you our warmest invitation to participate in our PARKINSON > LISTSERVE > ------------------- David Robert Austen Masters Degree Program in Information Science Indiana University, Bloomington Indiana 47405 U.S.A. Telephone 812 335 8835 Fax 812 335 8598 --------------------