Re: The Advocate, the Butterfly, the Fox and the Kiss

[janet paterson <janet313@xxxxxxxxxxx>]

At 12:47 PM 2000/06/29 -0500, ROBERT A MARTONE <bmartone@xxxxxxxxxxx> wrote:
>Washington in Review
>The Advocate, the Butterfly, the Fox and the Kiss
>
>It is with very mixed emotions that I right this year's
>Washington story. Parkinson's disease sure can bring out the
>best and the worst in all of us. One moment you can be
>hugging your loved one for hanging in there and fighting day
>in and day out against the cruelties of this disease. Then a
>minute later you can be screaming at your loved one for
>trying to do something difficult that could result in
>serious injury. As we traveled the capital with the largest
>group of advocates ever, this mix of joy, love, sadness, and
>fear combined with a chest pounding proudness was there
>minute to minute.
>
>The Advocate
>
>The movement and its success are certainly a site to behold.
>Watching more than 180 advocates, in so many stages of
>dealing with the disease move into the halls of congress is
>a stimulant that each PD family should experience.  Training
>was provided to each person to deliver a message loaded with
>PD research success stories while plugging for funds in
>support of three different programs and providing the
>strength to share our painful stories.
>
>The three programs:
>1. Focused PD research over the next five years at the NIH
>with the new money totaling just under one billion dollars
>of projects
>2. Support for $20 million  of environmental research into
>Gulf War syndrome as many of the veterans are showing
>Parkinson like symptoms
>3. Support for doubling the investment in The National
>Institutes of Health over the next several years so that the
>promise of the Human Genome project can be fulfilled
>
>Lt. Colonel Friedl reviewed the issues and the work in
>progress to sort out gulf War Syndrome. Dr. Isacson, Harvard
>Medical School, Dr. Kim Heidenreich University of Colorado,
>Dr. Jeffery Bloomquist Virginia Polytech Institute, Dr. Curt
>Freed University of Colorado and Dr. Greg Gerhardt
>University of Kentucky, and Dr. Jeff Cordower Rush
>Presbyterian hospital  reviewed project successes in several
>area's together with the issues remaining to implement new
>curative treatments.
>
>Neurotropic Growth factors, Stem cells and fetal tissue
>transplants headed the list of curative treatments. Deep
>Brain stimulators, virus delivery systems and much more was
>presented.
>
>The summary was simple, deliver the money and we will
>deliver the cure. PD is believed to be the easiest of the
>neurological disorders to solve. Solve it and many other
>cures will likely follow.
>
>Activists told their personal stories and the impact on
>themselves and their families. This part is always
>interspersed with tears of suffering but now the tears were
>often being dried by the hope of a cure being expressed by
>everyone present.
>
>The Butterfly
>
>Sadly, one of the younger advocates from Arizona who last
>year made a tremendous impact on the group took her life at
>the age of 34. She had been battling PD for several years
>and last year told everyone that she would be with us until
>the cure was found. Nancy and I had spent considerable time
>with her last year because of our experience with early
>onset Pd and our twenty-five year experience with it.
>
>During that forum Nancy and Paige had discussed the
>significance of a butterfly in their faith and had actually
>exchanged butterfly garments over the past year.  This no
>doubt was the low point for the advocates but somehow our
>determination to find the cure was enhanced by this sad and
>devastating news.  Paige we love you and will miss you.
>
>The Fox
>
>The forum had a very new and inspiring dimension with the
>addition of Michael J. Fox. The Parkinson's Action Network
>is now merged into and called the Michael J. Fox Foundation
>for Parkinson's Research. Michael made several appearances
>during the forum including an extra-ordinary personal
>expression and an exhausting visit to every single table for
>discussion and handshakes and picture taking. This is an
>asset that has not gone unnoticed in Washington. The health
>aides that I visited had already visited the Fox web site
>and one said he learned more about PD in the past 6 weeks th
>an they had during his entire career in Washington. What and
>impact!!!
>
>The Kiss
>
>On a happy note for the Martone family, Nancy with daughter
>Laura, daughter-in-law Leslie and me sitting by her side
>received a kiss on the cheek from Michael together with an
>award for showing the strength to continue to fight on after
>three brain surgeries and back surgery because of PD.  Nancy
>is still floating like the butterfly that she and Paige had
>hoped to emulate.  For my part well a kiss from the Fox and
>another from the Champ when he (Ali) came to Houston leaves
>me somewhere on Nancy's short list, I hope. Three other
>advocates, Ken Aidekman NJ, Lupe' McCann NY, and Margie
>Hansell CA, were also honored.
>
>
>
>Bob Martone
>BMartone@xxxxxxxxxxx
>
>

bob

thank you so much for your detailed report

the contrasts that you've highlighted here
bring everything into sharp and
bittersweet focus

the light of awareness spreading so rapidly

the wonderful news about mjf's generosity and spirit

personally
the day we celebrate the cure
i want to witness your getting a kiss from mjf and ali both
[right after me] [and right after nancy]

the shadow of a young life lost so needlessly

this news breaks my heart
pd didn't take her away from us
she didn't have to feel the way she must have
is there anyway we can get messages to paige's family?

while we are fighting to bring pd out of the closet
we need to drag cd out with it
it already has a cure



janet
hopeful through the tears

janet paterson
53 now / 41 dx / 37 onset
613 256 8340 / PO Box 171 Almonte Ontario K0A 1A0 Canada
visit my website "a new voice" at: ";