Personal stories from Team Parkinson at the LA Marathon - 03/03/2003

Marty Polonsky's Story:

The first time I gave any thought, at all, to walking in the 5K races at the LA Marathon was when my neurologist, Dr. Giselle Petzinger, suggested it to me. She was familiar with my whole history of back and leg problems which had me in a wheelchair less than 2 years ago, followed by an even longer time using a walker, and with my history of falling down frequently, due to balance problems which are common in Parkinson’s disease (PD), and to periodic collapse of my right knee, due to back complications. Of course, all of these ailments are tweaked by my PD of 17 years. But, if Dr. Petzinger thought that I could walk that far, I would have to give it a try. And, it was true that my right leg was getting stronger all the time, through intensive home exercise and physical therapy.

I "trained" for several months by walking laps at the local high school track, and the week before the marathon, I walked some of the long, steep hills around my house. I briefly struggled with some feelings of ambivalence about the event in the days before it. My feelings related to the fact that in my younger, pre-Parkinson's days, I ran several races longer than 5K, including two 10K'S, so why was I getting so excited at the prospect of merely walking 5K? The answer is obvious and didn't take long to figure out--it's all relative to where you start, that it's just as much of an accomplishment for me to walk 5K today as it was to run 10K in the past.

Race day: I felt fine, ready to take on the course. It was 70 degrees and sunny at 9 AM, with the temp likely to rise. Conditions were a little warm for the marathoners but perhaps ideal for the 5K walkers.

I arrived at the 5K-start area around 10 minutes before the race. The turnout was huge. The atmosphere was festive. The scene reminded me of a big block party, while the marathon lent an air of excitement. Before, and at the beginning of the race, I enjoyed visiting with friends in the rather sizable Team Parkinson contingent, but I soon found myself concentrating on my own (slow) pace, and off by myself.

My concentration was pleasantly jarred about one mile into the walk when a sidewalk band suddenly and loudly burst into song. I had not seen them and I was right beside them when they began playing a lively tune, so I almost jumped out of my running shoes but once I settled down and got some distance from the band, the live music was a real pleasure.

All along the racecourse, there were people who watched and cheered us on, and others provided water and Gatorade in disposable paper cups. These have been common features in all the races in which I have participated. I t is a nice addition to the race, and it promoted a feeling of community in me. At the same time, it was a somewhat liberating feeling to be able to drink the contents in the cup and then casually toss it in the street with impunity.

After a while more, my attention was drawn to a guy who was a little ahead of me. He was laboring mightily, as he had only one leg and he was using a pair of crutches to propel his body. I caught up with him, and looked him in the eyes and said, "You're awesome." He looked back at me with soulful eyes that seemed to say, "You're crazy, man. Leave me alone." And, I think I understood him exactly: when you're in the process of executing an act of courage, you don't need to be reminded of it because that just interferes with the process of putting one foot in front of the other, which is the way "heroes" often describe their "heroic" attitude and behavior.

Following this interchange, I was again cooking along fine until, less than 1/4 mile from the finish, I tripped on some debris close to the curb, and I went down (I had been drifting closer and closer to the right-side curb because my body pulls to the right, courtesy of my PD). It was really a minor fall, and I was not hurt, but two nurses instantly materialized out of nowhere, and they were hovering over me solicitously when, of all people, Dr. Petzinger appeared. And, she immediately took charge. She answered my ringing cell phone, she helped me to my feet, and she took hold of me so that we walked arm-in-arm for the remaining distance to the finish line. Dr. Petzinger, along with her husband, was towing and alternately carrying, 3 children under the age of 5, so she had her hands full when she performed her rescue mission with me. So, I began and I ended the walk with Dr. Petzinger. I am grateful to her for helping me finish the race and for embodying the spirit of team in Team Parkinson.

Another treat I experienced was the unexpected appearance of my sister, Sonya, at the finish line. She had spent the early morning hours grappling with the exasperating challenge of trying to get, first to my house and later, after that proved to be impossible because of all the street closings, to the race site. The last I had heard from her by cell phone, she had miraculously made her way onto the marathon area but she was some distance from the 5K finish line, so she was a welcome sight as I approached the finish.

I was too worn out to join the PD cheering section, which I had been looking forward to doing. I think that my fatigue was a product of the excitement of the event and of the anxiety I had experienced regarding the difficulties both my sister and I had encountered in driving to the race site, as much as of the physical demands of the race.

My sister and I celebrated by going for brunch at both of our favorite restaurants, Cha Cha Cha. Having gone there after two AIDS walks in the past, Cha Cha Cha has become our official post-race station. And having brunch with my sister at Cha Cha Cha capped off what had become a thoroughly delightful morning.--Marty Polonsky

Ken Aidekman’s Story:

In 1999 Mary Yost called to say she had an opportunity to raise funds for Parkinson's research through an affiliation with the Los Angeles Marathon. Mary and I had met in Washington, D.C. four years earlier while doing grassroots advocacy for people with Parkinson's. She liked the concept behind the Parkinson's Unity Walk, an event that Margot Zobel and I had developed in New York City to raise funds and awareness. The fundraising for research was important to us but we felt it was equally important to bring people in our community together in a public show of cooperation and unity. One way of showing this was to raise money for all of the different advocacy organizations.

Unfortunately, the Parkinson's community had a long history of poor relations between its many organizations. The Los Angeles Marathon provided us a unique vehicle with which we could reach out to all Southern Californians affected by Parkinson's regardless of their affiliation, location or background. From the beginning we made every effort to be inclusive and maximize cooperation between people from different the different groups.

One thing we learned in D.C. and in New York was that Parkinson's is an equal opportunity affliction. In New York City we found that there was a crying need for PD materials written in Spanish and that people of color were generally under-served by local government and advocacy organizations. As a community that has only recently developed a political voice we do not have the luxury to overlook those who can help us and whom we can help in turn. The Los Angeles area is an underdeveloped resource in this regard.

Of course I had ulterior motives for participating in the LA Marathon. If you've ever been in Northern New Jersey during February you know how appealing the idea of flying to LA in early March can be. Then there's the exercise. I've thoroughly enjoyed riding in the bike-a-thon for the last three years. I bought myself a bicycle to train for the first ride and since then the bike-a-thon keeps me motivated to work out and stay in shape. But this year I'm going for the whole enchilada - the marathon itself.

When I first learned that there were people with Parkinson's running in the marathon I was astounded. John Ball is my hero. Two years ago May May Ali announced at our carbo-loading dinner, "If John Ball can run the marathon, I can, too." When she finished the marathon last year with a smile on her face I said, "If May May Ali can run the marathon, I can, too." Unfortunately, someone actually heard me and suddenly it was too late to back down; the cat was out of the bag.

Finally, it all comes down to the people. That's the best part. Somehow when you do something for the good of others you meet the very best people. Mary Yost, John and Edna Ball, May May Ali, Dan Marcus, Aaron Moretzsky and all of the others who have become involved with Team Parkinson are the best reason to keep coming back. Of course there is a special person I really do it for. My dad lived with PD for his last fifteen years.

Good and decent people should not have to suffer with Parkinson's. Nor should their friends and family have to feel its reach. With that in mind, I can't think of a single reason to stay home. --Ken Aidekman

 

Doug MacGlashan's Story:

When I first got involved with our team (Mark Saxonberg, Stacey Lashley, Mike Harmon, and most importantly John Ball), my initial thoughts were very selfish ones, as I trained for my own first marathon. I was convinced by our "captain" Mark to concentrate more on finishing, rather than on time, and being the competitor that I am, that was a difficult task to overcome. However, the more I trained each weekend with my teammates, and the more I got to know them, and learn about the PD cause (not to mention also experiencing how difficult it actually is to run for 26.2 miles!), I slowly came to realize a much bigger picture, and how much smaller my role was in it.

As race day approached, I was both nervous and excited, but knew that our team was well prepared for what lay ahead. I had every confidence in each of us that we would all do very well, and that it was going to be a very memorable experience. The pre-race dinner was testament to the hard work of all the volunteers, John & Edna in particular, and I and my wife met some awesome people in the Schneider’s, Bill's family from Seattle (awesome job by the way by his son on his rendition of the Star Spangled Banner!), Ann, May May, and many, many others.

As the race began, the sight of thousands of bobbing heads inching slowly southward down Figueroa, to Randy Newman's "I Love LA" literally sent chills down my spine. I knew I was doing something special the whole way, but didn't get a full sense of it until around mile 19 or 20 when one of our teammates was hampered and slowed by a slight injury. The heart and mind were pushing a body that had just about reached its end. The decision of the team to stick together as a team was not only the right one, but an inspirational one as well. The feeling of running across a finish line after a grueling, hot 26.2 miles, holding hands with 5 other people that I proudly call my friends, will last me lifetime. I have each and every member of Team Parkinson to thank for that.....so deep from my heart.....Thank you.

My wife had taped a lot of the Channel 4 event coverage while she attended it, and there were many touching Personal stories that they had tracked over time, culminating at the race. I truly cannot think of any more deserving group of people or cause that would be suited to be covered than the group I was associated with. As a recommendation for next year, I would see if there is any way to get some of that coverage to follow someone like John Ball's history and dedication and achievement of running the last 8 (or is it now 9?) LA marathons, with PD. I think that recognition would help tremendously in the efforts to raise funds and make more people aware of PD in general. In any event, just a thought I had.

In closing, I cannot thank Team Parkinson enough for the memories that will be with me for my lifetime, and for putting into perspective my own personal achievement of finishing my first marathon. To all, the best! --Doug MacGlashan

 

Jim Wilber's Story:

Thank you for a wonderful event! Team Parkinson 2003 was a very inspiring event for me as a 1st time athlete participant in the 5k run.

My Dad has had PD since 1985 and it has become an effort lately to do the things we used to do so easily. Just getting in and out of a car can be a big ordeal. However, somehow our experiences with Team Parkinson for the carbo load dinner Saturday and at the LA Marathon/5k Sunday seemed to go so smoothly. It was as if we went through a time warp back in the past to a time when everything was not so difficult. It was incredible to be with so many nice people who understood what I and my family have gone through for the past 18 years, to share our experiences, and have fun all at the same time. If all this wasn't good enough already, I ended up getting my personal best time in the 5k run with a time of 22:30.

I am so happy that my Dad found you guys and gave me the opportunity to meet all of you and share this experience together. I look forward to participating with you again next year, but next year I'll be running the marathon for Team Parkinson and will do so until there is a cure for this dreadful disease. --Jim Wilber

 

Steve Evans' Story:

Prologue

As I stood there, in front of Dr. Greeley, the question I was about to ask him was one many people with Parkinson’s ask after watching their symptoms grow steadily worse over a period of years, "When do you know the time is right for surgery?" I was first diagnoses in 1984 and had first noticed a slight tremor two years before that. Since that time my Parkinson’s had gone from an inconvenience to a constant problem. Dyskinesias were becoming almost disabling. Tremor was now on both sides and could be quite severe at times. Rigidity was a problem when I was not quite medicated enough, and fatigue was always there, undoubtedly brought on by the constant movement I was trying to control. After some discussion, it was decided that I was a good candidate for surgery. I met with the surgeon, Dr. Hershauer. I also met with the psychiatrist who ran me through a battery of tests. And finally I was ready to schedule the operation, but we ran into a roadblock. Because the surgery was still considered ‘investigational’ my insurance wouldn’t cover it. After a 5-month wait, however, the FDA finally approved it in January and I was scheduled for DBS surgery the following May.

The month of May was ideal. In Spokane, where I’m from, there is a 12K race called "Bloomsday" that is held the first Sunday of every May. Over 45,000 people show up for it every year. I had only missed running t twice since I began running in 1984. I figured I would train hard for Bloomsday and at the same time get myself in good condition for the operation. The doctor called and told me he had an opening in April if I would care to move up the surgery. I told him no, that I wanted to wait and do Bloomsday first. The surgery was then scheduled for May 31st.

As you can see, running had become a part of me. When I was first diagnosed in 1984 I began running as a way to combat the disease. I also read extensively about mental attitude and educated myself about PD. But it was running that made me feel like I was really doing something that could make a difference in my Parkinson’s. Over the years I have managed to train for seventeen Bloomsday races – only missing twice.

During this time I had an idea growing in my head that I would like to do a marathon. But working full time while raising a family, on top of PD, was just too much for me. It wasn’t until I retired in 1999 that I could even consider it, and by then the disease had progressed too far. So I put my dream on hold until May 31, 2002. That was the real BEGINNING!

Part – 1 The Beginning

When asked to tell my story I have a hard time finding a beginning, for I have several beginnings. The first is when I found my handwriting was getting smaller. Being only 32 years old I didn’t think much about it but about a year later I noticed an occasional tremor in my right index finger. I felt certain that something was wrong and made the appointment with the neurologist and was subsequently diagnosed with Parkinson’s disease at the ripe old age of 34. I was so stunned when the doctor told me that my mind went blank and I couldn’t come up with a question. I just knew that it was serious and I was scared. At that age, looking back (I'm 52 today) I didn’t know what Parkinson’s was. I asked a co-worker and he replied, "Isn’t that what Lou Gehrig had?" My first response was denial. For two years I refused to take medicine hoping that it would go away by itself, maybe I could beat it on my own somehow. But it relentlessly progressed until I knew deep in my heart that I had an incurable disease.

For the next 13 years I took medication. The names of which are familiar to all Parkinson’s sufferers: Sinemet, Amantadine, Requip, Sinemet CR and others, which I’ve forgotten. But finally the dyskinesias and the tremors and rigidity and fatigue got the best of me and I was forced to retire at the age of 49. I tried to remain active, continuing my snow skiing and golfing and running. But the disease was winning the battle and I was forced to quit skiing last year and I was close to quitting golfing. My running remained pretty constant; however, I couldn’t run more than a few miles without getting fatigued. During this time I kept up fairly well with the innovations and treatment for PD. One in particular interested me - DBS surgery. I had been watching its progression on the Internet for several years and I decided last September, along with my neurologist, that I was a good candidate.

I had DBS surgery June 1st of this year. To prepare myself for the surgery I began running in earnest, completing a 12K race called Bloomsday in 1 hour, 29 minutes and 30 seconds. (My goal was 1 hour and thirty minutes.) I did my share and now the surgeon was to do his. I prepared myself both mentally and physically doing everything in my power that could possibly affect the outcome. How did it turn out? Rigidity down 90 Percent… Dyskinesias down 90 Percent…Tremor down 90 percent…Fatigue down 70 percent. It was a homerun! It’s the best I’ve felt in ten years or longer and now I am going to do something I wanted to do for years, complete a marathon. But not just complete a marathon but also in some small way contribute to the Parkinson’s community. I found the answer in the TEAM PARKINSON website. What better way to accomplish my goals? So with the help of my fellow Parkinsonians and lots of hard work I’ll leave my city of Spokane, Washington and make the trek south to LA in March to run my very first marathon! --With Team Parkinson.

Part 2 – The Trip to LA

We left for LA Friday about 1 o’clock and made it to the hotel about three. We chose this hotel because it was close to the starting line and the finish line and the convention center, so there wouldn't’t be any need for a car or a taxi. It was perfect. A little pricey but a perfect location. We had lunch and decided to go to the convention center to pick up our race numbers and t-shirts. At Bloomsday they give you the shirt after the race and at the marathon they give it to you before.

I had been corresponding with Edna and John Ball for about 6 months. They are the heads of TEAM PARKINSON LA and in charge of handling the donations (my sister and I collected almost $2500.00.) They were at the convention center when we went to the Team Parkinson booth and introduced ourselves. We all got hugs from Edna and they all seemed genuinely glad to see us. Carol Walton and Ken Aidekman were there too. They are on the Board of The Parkinson Alliance and had flown there from New Jersey. The Parkinson Alliance gets the funds from TEAM PARKINSON LA, which is in turn matched dollar for dollar by The Tuchman Foundation. It’s complicated, but what it means ultimately is that all the money collected goes directly to research, 100% of it!

Anyway they all seemed intent on the idea that I was going to make history. THE FIRST DBS PATIENT TO SUCCESSFULLY COMPLETE A MARATHON! NO PRESSURE THERE! They expected me to finish and to tell you the truth my knees had been bothering me for about two months. As a matter of fact I hadn’t exercised at all for two weeks prior to leaving, hoping my knees would be repaired enough to at least walk it. I was taking Ibuprofen in big doses. Could I do it? I had my doubts but I would at least attempt it. What was I getting into?

Part 3 - Race Day

Saturday was pretty uneventful. We just hung around the hotel, resting up for Sunday. I was taking my Ibuprofen. Sue got bored and walked down to the Convention Center again to pick up some souvenirs. That night though, we went to the Team Parkinson LA Carbo Load dinner. There were about 100 people there. Many were support people. Some were planning to do the Bike race and some were planning to do the 5K walks, which are two other races they have along with the marathon. The room was filled with excitement and anticipation. There were some speeches about commitment and dedication and everyone seemed to be genuinely interested. The doctor who does the research and is the recipient of the money also talked. He seemed very optimistic about his research. Then came my big thrill. May May Ali was there! Muhammad Ali’s daughter…in the same room! I finally got her free for just a moment and I shared my story about the torch run and how her dad had inspired me when he lit the cauldron in Atlanta. I also got my picture taken with her. How about that! She was friendly and bubbly and full of personality, and looked just like her dad. We really enjoyed ourselves. Next stop the Marathon!

It was a perfect day: sunshine and about 60 degrees. I was up at 4:00 AM. My blood was pumping. The race didn’t start ‘til 8:30. I drank a few cups of coffee and ate my muffin and milk that I had ordered from room service the night before. Sue was blissfully sleeping away so I just watched television and drank my coffee. My clothes were all laid out. My hat…singlet…race number…shoes and socks…sun block...sunglasses...Vaseline...power cells...muscle balm…Ibuprofen...etc. I was dressed and ready by six.

Wait…Wait.... Wait.... 6:15.... Wait.... Wait...Wait ...6:30...Wait...Wait...Wait...7:00.

Sue got up and got dressed. And at 7:30 we went downstairs for pictures. We met up with the other runners and had our pictures taken and then the excitement really started to build. We started walking towards the starting line. The sunshine, the warm air, downtown LA with its buildings reaching up to the blue sky. It was pretty impressive. I could feel the excitement in the air as the sound system blared out. Runners were everywhere! My sister and I positioned us at the back of the crowd so as not to get in the way of the faster runners. We intended to walk it, if my knees held out. There was pain in my knees at the starting line. The first aid station was at seven miles. If the pain started to increase, then I would bail out there. If it stayed the same I would continue. These thoughts were going through my mind as we stood waiting. I didn’t want to damage myself permanently.

We are off! As we cross the starting line the crowd on the side of the road is cheering. I'm feeling good. Even if I only go 7 miles it will be worth it. I'm in the LA Marathon! The 4TH largest in the world! And I’m here because of an amazing surgery, which has brought me. If I couldn’t finish, it wasn’t important. It was the journey that took me here that counted. That is what it’s all about. But in the back of my mind I told myself I was going to try, and try hard. I walked past the cheering people and there was May May, Muhammad’s daughter! She sees me! She waves! What a thrill.

The first two miles took us about an hour because of the crowded start, but after that we were stepping out pretty good. The pain in my knees was still there but not getting any worse. So I was feeling comfortable. We went through the next three miles without any difficulty, and then it happened. The clean up crews were moving up on us and we were told to move to the sidewalks. Not only that but they were closing down the water stations just before we would reach them. We could be in serious trouble...walking on cement and jumping up and down curbs for twenty miles can be taxing; not only that, but water and Gatorade are crucial. We managed to get water at the water stations from a few of the volunteers that saved some cups after the trucks roared through. A few times we managed to get the last two cups. There were still people behind us! I don’t know what they did for water. Walking on the sidewalks was dangerous. Many were uneven and narrow and old with slabs sticking up. We would walk out in the streets for a while but the trucks would move up on us and we would once again be relegated to the sidewalks. We fought these trucks for the next fifteen miles. Going from sidewalk to road. Trying to find water before they cleaned up the water stations. There was only one station we made it to before the trucks did, and that was mile 16. Griping about the water and dodging the trucks kept us pretty busy. My knees? What knees? They didn’t hurt at all now! About mile 13 I felt like I was really going to do it. In fact, I was really doing it. It’s downhill from now on!

That’s the way it went till mile 18. Leap frogging with the cleanup crews, scrounging for water and up and down the sidewalks. We were still about 8 miles away when they opened up the streets to traffic. And then we had to walk on the sidewalks only. Before that we could walk in the streets a few blocks at a time until the police and the cleanup crews chased us off. By mile 20 the sidewalks started to take their toll on us and we began to get blisters and both of us were hobbling a bit. We found an aid station where they treated our feet and we were off again.

Because the roads were opened up we were afraid of taking a wrong turn somewhere and getting lost, but there were others in front of us and we just hoped they knew where they were going. The miles were slowly ticking down. 21…22…23…At MILE 24 we passed a man who was 85 doing his 19TH marathon.... At MILE 25 we passed a young man on crutches that was dragging his spindly legs as he pushed toward his goal. I felt guilty for complaining about my blisters…Then MILE 26 and there were my Team Parkinson people patiently waiting for over 8 hours for our appearance. Edna and Carol ran out to meet us and gave us each a hug. I was going to make it. Sue ran over to me and said she was proud of me. Two tenths of a mile to go! I CAN’T STOP NOW. We turned the corner and there it was -- THE FINISH!

As I walked through the finish I noted my time: 8 hours and 40 minutes. There in front of me was a young lady with a medal to put around my neck and as I lowered my head, I thought to myself: "I earned this!" I now have that medal on my wall, along with my singlet and my number.

I finished this trip with no regrets. It started as a dream that I’ve had for a long time –to complete a marathon. I started training for it last July. Exactly one month after surgery. It’s been an interesting road. I am 53 and have had DBS surgery. There aren’t many books on how to train so I had to go by feel much of the way. I originally planned to run it, but maybe next time. How are the knees? Haven’t hurt since MILE 7.

A Footnote to the Story

I told you earlier that I would tell you how I met Muhammad Ali’s daughter. It was at the Team Parkinson Carbo-load dinner. She is a contributor to the event. I had my picture taken with her and I told her how it was her father who inspired me to carry the Olympic torch when it came through Spokane last January on its way to Salt Lake City. She listened and seemed genuinely touched. For me, it was a thrill. Who would have thought that my idea to run a marathon would lead to a meeting with Muhammad Ali’s daughter? Incidentally, the pasta dinner that is held by Team Parkinson the night before the Marathon is free to all the athletes and their families. On Saturday night before the race, the team meets to honor all the fundraisers and supporters as well as the athletes who will be running, riding their bikes or walking in the event. John and Edna Ball are co-chairs of Team Parkinson and hosts for the dinner event. They volunteer their time. John has had PD for over 20 years and still has run the marathon for the last 8 years. Edna’s mother had PD for 37 years and passed away about five years ago. They are both just great people.

There were three of us this year with PD who did the marathon. There were also about 25 who were caregivers or who had loved ones with PD, and they were doing it for them. There are also a bike race and a 5K walk in conjunction with the marathon and there were several people from Team Parkinson in those races. -- Steve Evans