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
--------------------