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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. ----------------------------------- Bob Martone [log in to unmask] ----------------------------------