Dear Barbara:
Excellent advice to all of us.
Henry Guttentag


David Robert Austen wrote:
>
> 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
> --------------------