Speech made by John Ball at TP's Carbo Dinner - 03/05/2007

As you have all heard more often than I care to admit, Parkinson’s can be a devastating disease. It can rob you of your job, your mobility, even your family. It can certainly rob you of the normal joys of day to day living. For many of my fellow sufferer’s, it can become the dominating force in their lives and the cause of their death.

This past year brought just such a case home to me in a personal way. Dr. Marty Polonsky was a psychologist in his working life, but I didn’t meet him until he had been diagnosed with Parkinson’s for several years and had already been forced to close out his practice. The disease had seriously affected his voice as well as his posture and gait, and made it difficult to for him to be heard. Marty was ill. But on the inside, he was still a bright and inherently cheerful man with great sensitivity and a desire to communicate with others. His tendency to fall had reduced his travels to a wheel chair most of the time, until he found Team Parkinson.

Through some encouragement from his doctor, and great help and support from friends, particularly Mary Yost, Marty decided to walk the 5k at the LA Marathon for Team Parkinson in 2002. He started training slowly at first, out of his chair for a few feet at a time, but soon worked his way up to walking around the block and then around it several times a day. On race day, Marty walked the 5k slowly. His tendency to list to his right side led him ever closer to the curb until, with less than a quarter-mile to go, his cell phone started ringing and he tumbled trying to answer it. He tripped on the piles of paper cups alongside the curb and fell hard in the street. Almost miraculously, his neurologist, Dr. Giselle Petzinger was walking behind him with her family and saw him go down. Leaving the kids with her husband, she rushed over to help him, answered his cell phone for him and got him to his feet again. They finished the 5K walk arm-in-arm.

Marty was back at the 5K in 2003, 2004, 2005 and 2006, walking with his caregivers and a bicycle helmet in case he should fall again. He wanted to be part of Team Parkinson-- no matter that it sometimes took hours on public transportation to get to our events. I could count on Marty.

Well, Marty won’t be at the 5K this year. He died last summer at age 60 from the complicated effects of Parkinson’s disease and an infection that couldn’t be stopped in time. His death was a blow to all of us, and we are all training and competing in this weekend’s races in his honor. Marty didn’t quit just because things got hard, and I’m sure that he still wants us to smile and keep putting one foot in front of the other. We’ll be thinking of you, Marty, on race day.

Let me tell you about some of the other athletes of Team Parkinson. For me, this organization is not just about raising awareness and raising money for research; it’s about raising our spirits as well. For example, Jerry Woudenberg will be running the 5K tomorrow. Although he doesn’t look it, he’ll be in the 75-79 age-bracket. Last year Jerry placed third amongst his peers in his bracket of the 5K. Jerry first heard of Team Parkinson when he ran the marathon in 2004. He didn’t sign up for the team because he was still in hiding, trying to shield his family and friends from his Parkinson’s diagnosis. This year Jerry decided it was not only time to quit hiding, but to become a visible part of our efforts to raise awareness and funding for Parkinson’s research. In doing so, he also elevates my spirits and makes me proud to have him as a teammate. Jerry and Mary Kay please stand up and let people know who you are.

We have several new team members who will be running in the marathon tomorrow, but we also have a new team member who is in no way new to the Los Angeles Marathon. In fact, he knows this race as well as anyone can because he is a Legacy runner, one of those special people who have run each and every one of the 22 races since 1986. Willard Krick will be running his 22nd consecutive LA marathon tomorrow. Twenty years ago, he was the lead runner in a centipede, 16 runners tied together, which finished in 3 hours and 31 minutes. That centipede ran for seven years in a row. Willard has been continuing solo since then and plans to run at least through 2020. . He will turn 70 this year. Willard once said that he wants to become the oldest legacy runner still finishing. Those plans were upset a year ago when he was diagnosed with Parkinson’s. But Willard is here tonight, and ready to run tomorrow. He won’t be alone in the race with Parkinson’s. In fact, he won’t even be the only legacy runner with Parkinson’s. There is another, but, like Jerry three years ago, he has not yet “come out.” Gary is a great guy and I wish he could be part of our team, but I will respect his desire for anonymity. Willard, please stand and let people know who you are. We all look forward to getting to know you better.

We also have with us a very special team member from Norway. Roar Eikenes was diagnosed with Parkinson’s in 2002 at age 55. He had been an active marathoner for years, competing in over 40 marathons around the globe. When he was diagnosed, he didn’t know if that meant the end to his running. Norway is a small country by some standards and not many people knew much about running and Parkinson’s. Last year he found Team Parkinson on the internet and decided to join us in San Francisco for the marathon. He ran a strong race and finished in less than five hours. He also ran the New York City marathon last fall and did even better. I’m afraid I’m about to lose my status as the fastest PWP in the race. His goal tomorrow is to run it in 4 and ½ hours. Roar, can I ask you and your whole family to stand? As you can see, he is joined on this trip by his wife and daughters and their boyfriends. Fortunately, he is now known to the PD community in Norway, and has some financial support for his running through the European pharmaceutical company representing Novartis. I hope to see you somewhere along the road tomorrow, but I suspect it will be at mile 19 with our Team cheering station after you’ve finished. Roar says the training was difficult this winter, because it was too warm for good cross country skiing and too cold, wet and icy for running. It gives new meaning to what constitutes difficult training conditions.

Last year, Dan Kiefer ran his first-ever marathon for Team Parkinson, and he’s back with us this year, although he’s dropped down to the speed race, the 5k. Over the last three years, Dan has transformed himself from a corporate lawyer struggling to remain at work to a full-time Parkinson’s advocate. He started a Young-Onset support group at Cedars-Sinai, and he represents all of us on the Patient Council of the Parkinson’s Disease Foundation. In addition, he is a board member of the Stem Cell Action Network. He has also spoken out at meetings of the ICOC, the governing board of the California Institute for Regenerative Medicine. Dan is here with his wife Deborah and their lovely little Lucy. Stand up, please, and good luck in the race tomorrow.

I must say something about those special people I train with year-round. Mark, Doug, Mimi and David, you know that without you, I couldn’t be doing this. It is so hard to get up each morning, take my medications, and wait for the time I can move freely. Then I have to decide, shall I run today, or “shine it on?” The only thing I know for certain is that when you say you’ll be there to run with me, you will be there, and therefore so must I. Without your commitment and dedication, I don’t think my life would be as rich as it is. The riches I treasure are those of friendships and family, and I don’t think anyone has ever felt more blessed than I do tonight. My dad and my son will be in the 5K tomorrow. My mother, wife, sister and daughter are here with me all the way, each of them dedicating whatever time they have to supporting Team Parkinson. I couldn’t do this without you. Edna, you are the very center of Team Parkinson. You are the nucleus around which the rest of swarm like little electrons, each at the proper level of energy. I love you and I thank you for your devotion to this task.

There are many other stories that I wish I could tell about the wonderful people who are here tonight and will run, walk or ride tomorrow. I can’t tell them all, but I can’t help mentioning 70 year-old Carlos Montalvo who heard about Team Parkinson just a few days ago and decided he has to do the 5K - with his walker! Edna and I have talked to his wife, who is a very determined caregiver, and although she wasn’t in favor of the idea, has relented enough to get him to the start line tomorrow morning. So if anyone sees an under-prepared Latino man struggling with his walker along the 5K in his Team Parkinson t-shirt, please make sure he’s all right.

I must not forget to thank the Norm Reeves organization for their generous support of tonight’s dinner. Their contribution makes it possible for us to have this terrific dinner and share in this special event. I want my good friend Lee Stacy and his wife Rosie to stand. Lee is my “go to” guy in the company, and has been supporting us for several years now. Thank you, Lee and Rosie, for our enduring friendship and your support.

For the second year, we have some teams within Team Parkinson. These teams have done a tremendous job of filling out our ranks and raising money for research. The Frankel/MacAllister family, The Ackerberg Family, Team Albert, The Wong Family, the Liebers, and the Markowitz families – You are all the very heart of Team Parkinson because you show how this disease affects far more than just the person living with it. The reach of this disease is long and penetrating. It works its way into our lives through devious paths and demands far more of our attention than it should. We can’t sit idly by and let that continue – not when we have an opportunity to be part of the effort to find a cure. This is the perfect time to make things happen. Let us each do what we can to bring this disease to its end. I run marathons because I can, and because others can’t. Maybe you don’t think you can ever complete a marathon but you can be a part of finding the cure. You are Team Parkinson and together we have the power to change the world.