Washington PAN Reflections.

With much hope and considerable uncertainty Nancy and I made our trip
to Washington. Together we were determined to "Be Invisible No More"
the Parkinson's Action Network Motto. Separately I feared for Nancy's
overall health as we continue to fight a post pallidotomy 11 month low
filled with depression and back pain and sleeplessness. Nancy feared
that I would get so focused on Capitol Hill that I would forget that
she the parkinsonian with me would be abandoned for the grander good of
the whole.

Right up until Saturday morning the day we left Houston, Nancy's
attendance remained in doubt. Her off times were resulting in a total
freezing (paralysis) of her legs. The fear of this hitting in the
Capital, building or the Senate building or the House buildings was
almost too much to bear.

Using as many of the airline services as we could we were able to
alleviate some of the fears and reduce the tension. We boarded the
plane without incident and met Mary Helen Davila from Arizona who had
just changed planes and sat right behind us. Nancy not two minutes into
the trip had met her first PAN friend. The flight was smooth, on time,
and friendly but two off times during the flight hit with a vengeance.
This combined with a rest room trip made for a difficult but engaging
trip for all who sat around us. There was kindness and generosity shown
by all. We had more blankets and pillows being offered than I ever
thought were on a plane.

 Despite planning her meds to avoid freezing when the plane touched
down, Nancy froze up and we were not able to navigate the walk way even
with the walker that we brought along. Thanks to Mary Helen who was
'on' and her neat portable wheelchair we navigated our way out of this
potentially emotional downer with the stabilizing feeling that people
are still great even those on there way to the Hill.

We managed to relax that evening on the Roof Restaurant at the Hotel
Washington and found the St. Johns Episcopal Church of the Presidents
across from the White House on Sunday morning  This too was a
wonderfully unique experience as a female Bishop Jane Dixon was
confirming 40 new members into God's family. They were young and old
alike finding peace with their God. And reaffirming their faith. This
some how seemed so appropriate to our plight.

Sunday night many of the  PAN attendees arrived at the restaurant for
greetings and dinner. We renewed last years acquaintances and started
new friendships with the many new attendees. The air was heavy with
anticipation and their was a sense of urgency not despair about the
group. We divided up like kids in grammar school, boy girl, Texans
couldn't sit with Texan's  etc. This presented another challenge for
Nancy and me as we sat at opposite ends of this very long table.
Unexpectedly Nancy became so relaxed in this potentially charged
setting that she managed to fall asleep at the table causing her dinner
buddies some concern but then either Joan or Rusty said this is who we
are guys and this is what we want people to see. Every body except
Nancy nodded with a smile she was already nodding enough, to nod again
would have put her on the floor.

Monday, began with introductions. What a talented intelligent group
this was that had assembled. Diagnoses spanned from as little as two
months to as long as 20 years.  Caregivers representing  spouses and
parents,  concerned offspring whose father and grandfather had suffered
and lost the PD battle.  All gathered with one purpose, to tell
Washington about this lousy disease and to get their support for HR1462
and S684, the Udall Bill.

Joan Samuelson and Mike Claeys had done the usual great job of getting
things organized through Neuman and Company. Mort Kondracki represented
his and his wife's suffering and how to approach the Hill to get
results. Millie Mort's wife has endured 16 years of PD and had a
unilateral pallidotomy at Emory this past year. She is having balance
problems and did not attend.

The VP from Amgen lifted all our spirits with his presentation about
the successes they have had with Monkeys, introducing GDNF (Glial Cell
Derived Neurotropic Factors) in restoring dopamine producing cells in
the monkeys brains. The video was impressive as the MPTP induced PD
symptoms on the monkeys left side were virtually reversed with the
injecting of GDNF into the monkeys ventricle. The process is repeatable
and the GDNF cells  can be mass produced. Human Trials will begin this
year. There was much optimism in the room after this presentation.

The afternoon and evening were spent preparing the attendees for the
assault on Capital Hill. Unlike last year this group seemed to come
prepared and charged the Hill with military precision. Nancy and I
visited 8 congressmen and our two senators Tuesday and Wednesday.  We
also lobbied Senator Jesse Helms in the elevator so lets say 11. It is
difficult to describe the range of emotions that we experienced and
witnessed during these meetings. Monday in the House Majority whips
offices Nancy was a waterfall of tears before we even began introducing
ourselves. thank you Barry Green from Tyler, Texas for comforting Nancy
while I delivered our message,

My message in all 10 sessions went something like this.

"We in Houston, and  the Houston Area Parkinsons Society have 10 active
PD support groups, 10 free physical and speech therapy classes across
the county. We have 3 water therapy classes and this past year raised
$120,000 for research at Baylor College of Medicine and the University
of Texas. But our local efforts are not enough. We need you to be our
advocates and to cosponsor the Udall Bill for  Parkinson's Research,
Education and Assistance. Your support will reduce the budget deficit
by as much $26 billion  by investing $100 million now and for the  four
succeeding years. The return on this investment is more likely to be
achievable than all the other research that is captured on this handout
which shows Aids/HIV, Cancer, Multiple Sclerosis, Alzheimer's and
Parkinson's.

Note that Parkinson's with 1.5 million afflicted has the lowest per
capital level of funding at a time when researches are convinced that
targeted research for Parkinson's will find the cure in 5 years and
that they will be able to implement prevention programs before the baby
boomer population reaches the age when Parkinson's typically strikes
which is between the ages of 57 and 61. As you can see from this next
chart there is a very large segment of the population about to hit this
bracket.  The $26 billion estimated cost to Medicare, and Medicaid, and
the lost Social security revenue  from those who will be disabled could
substantially increase the budget deficit as boomers hit this bracket.

Nancy was afflicted at age 30, she has been unable to work for the last
10 years, in 1989 our hospitalization costs were $20,000. In 1995
hospitalization was $50,000. My career opportunities are limited by
Nancy's physical condition and my own emotional state as I try to deal
with this progressive degenerative neurological disorder that robs
those afflicted of their most basic abilities.

Can I count on your support for this compassionate and cost effect
piece of legislation? "

Tears were often interspersed throughout these presentations. Most
everyone showed great compassion and support. One notable exception for
the second year in a row was that experienced at Kay Bailey Hutchison's
office a Texas senator. Her heath assistant for the second year in a
row stoned walled us and showed no compassion. The Senator has a tough
job she said and receives a  lot of legitimate requests. We will add
yours to the list. This is not a direct quote but it reflects how we
felt after we left. Shelby the aide has not heard the last from us and
I hope that many of you will feel compelled to send  a note to the
senator's office as well.

All the other visits were cordial. compassionate and very supportive of
the Udall initiative. All supported increasing NIH spending, all said
they would try to understand the Parkinson issue in light of the
material I presented. Two signed up to co-sponsor, one republican and
one democrat. Five said they probably would and  one said as a matter
of policy he does not co-sponsor any bills but we could count on him to
vote favorably for the bill. Senator Gramm's aide said he would take a
favorable message to the senator but couldn't predict the outcome.

As is a custom of mine I try to talk about the high and low point of my
experiences. On this trip my high and low were experienced Wednesday
evening around 6:30 PM. As I sat in a tired contemplative mood, writing
my debriefing  reports, I was feeling somewhat awestruck by what we
had just done over the past three days. In this room dubbed the WAR
ROOM, I sat next to Jim Cordy and Joan Samuelson two of the finest,
strongest most dedicated people I have been privileged to know. Both
were showing the stress of the past tree days and their PD symptoms
were noticeably increased, Joan showing dyskinesia and Jim showing his
PD mask. During the next 10 minutes Jim was spouting off the
preliminary results of the visits and got his batteries recharged
beyond normal human expectation. As I sat quietly Jim began to describe
to Joan the need to return to Washington during the next 6 to eight
weeks to finish what we started. "WE ARE CLOSE SO CLOSE." As he
described a renewed action plan, Joan slipped lower and lower in the
chair.  Jim was practically standing up on his toes as if to deliver
the final roundhouse right hand.

For my part I remembered the Joe Frazzier/ Mohammid Ali fight in Manila
can't even remember who won now but I know these were two champions. As
Joan started to regroup and raised herself up in the chair she at first
politely then with emotion then with  courage told Jim what had to be
done over the next two months to meet all the 501c3 tax exemption
requirements, board of directors reports, auditors reports, news
letters etc. Jim responded with a blow to the chin - "Washington is
where you need to be, forget all that stuff." Joan responded with a
left hook,  "and what about all the people who have contributed
financially to get us where we are? I have to complete these reports
for them."  Jim started throwing a volley of left jabs all designed to
get the team back to Washington.  Well lets get Mike Claeys back here
and get Mort to redouble his efforts and, and, and!.

I was finished with my ten debrief reports and rang the bell on this
round declaring both fighters a victor. As I sit hear now reflecting on
that scene I ask myself what can I do to help more. I sadly report that
I too am at my wits end and need help.

I ask all who read this note to reach out and thank these two warriors
but more importantly do what they have so valiantly done. Contact your
congressmen and senators and be INVISIBLE NO MORE. You can make a
difference. Get on your computers, your phones, call your relatives and
friends and ask for their support. We are too close to success to let
this opportunity slip away. If you can get motivated enough to help
yourself, do it for these to warriors and friends, or do it for my wife,
God knows they deserve our support. Just do it!.

Nancy and I did end our visit with a positively delightful evening with
Brad Udall, Bob Dolazal (Arizona) and Joan. Jim and Debra were already
heading back to Pittsburg.
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Bob Martone [log in to unmask]
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