You've made some good points here, Barbara. Thanks for the enlightenment. David ----- On Sat, 14 Dec 1996, Barbara Mallut wrote: > 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 > -------------------- > ------------------- 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 --------------------