In 1983, John Ball was almost at a midpoint in his life-a time to assess the first half before he carried on with the second. It was then that he had to deal with the diagnosis of Parkinson's disease, just before he turned forty years old. In this memoir, Ball narrates his story of how he has lived with Parkinson's disease and how he has worked to create a better life for others struggling with difficult diagnoses and debilitating diseases. Living Well, Running Hard offers insight into Ball's growth from isolation into a leadership role in the Parkinson's community. His long struggle to understand the disease provides an in-depth look at the complexities of Parkinson's. Ball tells how his transition was triggered by a childhood desire to run a marathon and how his love of running, his desire to take action, and his willingness to take on challenges come together in the formation of Team Parkinson. In spite of his diagnosis, Ball has continued to run the Los Angeles Marathon each of the last fifteen years. Intimate and inspiring, Living Well, Running Hard communicates one man's story of perseverance and triumph.

Living Well, Running Hard

Lessons Learned from Living with Parkinson's DiseaseBy John Ball

iUniverse, Inc.

Copyright © 2011 John Ball
All right reserved.
ISBN: 978-1-4620-1430-9

Contents

Author's Note..............................................................................................viiiAuthor's Note on the Second Edition........................................................................ixAcknowledgments............................................................................................xiChapter 1 The Discovery....................................................................................1Chapter 2 Getting Back to Work.............................................................................19Chapter 3 Family Secrets...................................................................................30Chapter 4 Learning to Live Well............................................................................41Chapter 5 On Shaky Ground..................................................................................47Chapter 6 Running Hard.....................................................................................52Chapter 7 Building a Team..................................................................................59Chapter 8 My First Marathon................................................................................62Chapter 9 Returning to the Air.............................................................................69Chapter 10 Getting to Know My Enemy........................................................................75Chapter 11 The Silent Partner..............................................................................83Chapter 12 Getting Connected...............................................................................92Chapter 13 The Formation of Team Parkinson.................................................................104Chapter 14 Other Transitions...............................................................................121Chapter 15 Learning to Succeed.............................................................................124Chapter 16 Our First Out-of-Town Event.....................................................................137Chapter 17 One Tough Marathon..............................................................................142Chapter 18 The Catalina Island Marathon!...................................................................149Chapter 19 Team Parkinson in Norway........................................................................156Chapter 20 My First Ultra-Marathon.........................................................................162Chapter 21 Dateline: Glasgow, Scotland.....................................................................168Chapter 22 State of the Art in Parkinson's.................................................................174Chapter 23 Blinding Flashes of the Obvious.................................................................181Appendix A Organizations and Resources for Parkinson's Disease Patients and Caregivers.....................187Appendix B Bibliography and Selected Reading...............................................................191About the Author...........................................................................................193

Chapter One

The Discovery

I remember the night my future got a lot brighter. I was playingcatcher on the company softball team one evening after work. Thesoftball diamond was a brightly lit pool of red earth and green grassin the surrounding darkness. The other team was wearing crisp bluebaseball uniforms with "Motorola" written boldly across the chest, whilewe wore an assortment of jeans, shorts, and red, white, and blue T-shirtsbearing Honda Race Team logos. We couldn't get the company tospring for real uniforms like Motorola had, but at least we got old race-teamshirts for free! In spite of the usual enthusiasm and chatter of menat play, neither team was hitting well, so the game was excruciatinglyslow. I was particularly frustrated with my own performance. It doesn'ttake much to play catcher in slow-pitch softball. I stand behind theplate and wait to catch the ball after it bounces on the mat for a strikeor lands off the mat for a ball. Then I retrieve it and throw it back tothe pitcher. That's about all there is to the job. Once in a while I mayalso catch a desperate throw from the outfield and make a diving lungeto tag out a runner barreling in from third base. That happens maybeonce or twice in a season. That night, our pitcher, Larry Langley, hadn'tfound the range yet, and he was putting lots of his pitches in the dirt.Our game was the last of four played that night, so the field was prettytorn up, making the balls bounce off at crazy angles. With each pitch,I had to wait for the ball to stop rolling before I could pick it up; mycoordination and balance were so poor that if I leaned over too quickly Iwould miss it or simply fall over. To be honest, I had been having troublefielding the ball for several months, even when we had the first game ofthe evening and the infield was smooth and the grass newly clipped.

I had once been a good athlete, though never a really good ballplayer.But now, in the summer of 1983, I was just a few months from turningforty, and I was losing my ability to control my body. My mind wassending out commands, but my body wasn't listening! While playingon this team for almost eight years, I'd gone from being a respectableoutfielder with good range and a strong throwing arm to what I wastoday, a really lousy catcher—a stumbling, fumbling wannabe whocouldn't catch, couldn't hit, and couldn't even run to first base. I hadfailed as an outfielder, second baseman, and pitcher; catcher was theonly spot left. Pitching had been fun, but eventually I could no longerthrow strikes. Now, as catcher, I couldn't even throw the ball back tothe pitcher without bouncing it! They still let me swing the bat, butI'd lost so much mobility over the last year that someone else had torun for me if I happened to get a hit. The reason the team still let mebat was that they were consistently short of players and would have toforfeit games if they didn't have enough batters. That, and maybe thefact that I had been team manager for several years, was now the onlyreason I played at all.

But that night, something changed. It was the third inning whenLarry walked off the mound and asked, "What the hell is going onwith you?"

"What do you mean? I'm trying my best."

"Something's different about you tonight," Larry said. "You justthrew the ball back to me three times in a row without bouncing it.That's the first time in months." He stared at me for a minute and thensmiled and said, "You almost look like your old self."

I suddenly realized I did feel better, not as stiff or as awkward asusual. I could almost stand up straight. In fact, I felt almost human!Some of the team had come in to see what we were yakking about,and as I looked around at the other players' faces, I saw grins hadreplaced their usual pained looks of concern. Cranky old Ed Mazenkoshouted from first base, "Hey, John, what did you eat today, some magicbeans?"

I reached into my jeans pocket and took out the little packet ofyellow tablets Dr. Beck had given me that morning. He had said, "Trythese: one every four to six hours for a couple of days. If they do anygood, then maybe we'll know what you've got." No further explanation;nothing about what the pills might do or how I might react to...