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 BalliUniverse, 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 them. Justtake these and see what happens—a little bit like Alice in Wonderland!I had left his office in a bad mood. I didn't like being used as a guineapig. It wasn't the first time some doctor had tried that approach, and thefirst time had made me temporarily crazy—really bonkers, with terrorand tears and feelings of hopelessness. I thought it was a poor way tomake a diagnosis—like a mechanic just replacing parts until somethingfinally works. I'd stuffed the pills into my pocket and stalked out of theoffice. I waited until the end of the day to take the first tablet; I didn'twant to risk going out of control at work like the first time. Now Ilooked again at the packet. What were these things, anyway? The labelsaid "Sinemet 25/100." I had no idea what that meant, but from whereI was standing—with my head up and my shoulders back for the firsttime in months—they might as well have been labeled "magic beans."In the glare of that red-earth infield, surrounded by the bright greenoutfield, the rest of the world didn't seem so dark anymore. At homethat night, I pulled out my guide to prescription drugs and looked upSinemet. That's how I found out I had Parkinson's disease.
I was thirty-nine years old, had been married nearly ten years,and had two kids—David, five, and Sarah, three. When I read thatParkinson's disease affects more than a million Americans, I wonderedwhy the doctors I'd been seeing for over ten years had never evenconsidered it. Then I saw why: people with Parkinson's are usuallydiagnosed in their sixties or later. Looking back over the years, I figuredI'd shown symptoms of Parkinson's since I was about twenty-seven.Still, if someone had asked me how I felt at the moment I knew I hadParkinson's, I would have said I was a happy man. You may thinkthat's an odd response to the diagnosis of an incurable, degenerativeneurological disease! Yet for me it was such a relief to put a name to theproblems I'd had all those years; I was no longer facing the unknown.There had been so many bad possibilities: a terminal brain tumor, orchorea athetosis or myasthenia gravis—that word, gravis, has too muchof the word grave in it. Finding out it was Parkinson's the way I didwas also a relief because Sinemet, that miraculous little yellow tablet,relieved many of my worst symptoms.
When I went to work the next morning, I told my boss about mydiscovery. "Hey, Tom, I've figured out what my problems with my leftleg are all about. I've got Parkinson's disease."
His response was, "I suppose it's good to have a name for it; nowlet's get back to work."
I didn't know much about Parkinson's, so I researched it duringthe next few weeks. A Scottish doctor named James Parkinson firstdescribed its characteristics in 1817. Before that it had been called simply"shaking palsy." Not until 1960 did Austrian researchers Ehringer andHornykiewicz discover that the primary cause of Parkinson's was theloss of dopamine-producing cells in the area of the brain called thesubstantia nigra. Why those cells die is still unknown more than fiftyyears later. Dopamine is a neurotransmitter that enables signals to besent back and forth through nerves between the brain and the body. Ithas to be in balance with another neurotransmitter, acetylcholine, forthe brain to communicate effectively. Dopamine and acetylcholine arecreated in the brain and in other parts of the body, where they serveother functions. In Parkinson's disease, the dopamine-producing cells ofthe substantia nigra die out, eventually causing a severe communicationsbreakdown. The cells that produce acetylcholine and other brainchemicals like GABA, norepinephrine, and serotonin may suffer onlyminor damage but add to the wide array of Parkinson's symptoms.The brain is left unable to communicate effectively with the rest of thebody. That's what caused me to lose my mobility, to wake up stiff andsore every morning, and to stand there, frozen in place, watching thesoftball slowly roll away.
Since dopamine is not difficult to manufacture, some doctorsthought they might make up for any shortage in the brain by injectingit directly into the bloodstream or giving it orally as a pill.
But the brain is practically isolated from the larger molecules in thebloodstream. The cells in the walls of the brain's tiny blood vessels arepacked so tightly that only very small molecules like glucose, oxygen,and water can get through; dopamine molecules are much too large.This blood-brain barrier is actually a good thing, because it maintainsthe right balance of chemicals for proper nerve function. It also shieldsthe brain from bacteria, viruses, and most toxic substances, as well ashormones the brain puts into the bloodstream to control other partsof the body. So the brain must have sub-manufacturing units likethe substantia nigra for everything it needs that can't get through thebarrier.
When those dopamine-producing cells in the substantia nigra dieout, they aren't replaced by new ones. Until very recently, researchersthought that the brain stops creating new cells after infancy, that adultbrain cells never divide, and that the brain can't regenerate them. Nowthey're not so sure. But without healthy living cells in the substantia nigra,there is no mechanism for keeping dopamine at the proper level in thebrain. At least for now, once those cells are dead, you've got Parkinson'sdisease for life. Postmortem examinations have shown that most patientsdiagnosed with Parkinson's had lost 75 to 80 percent of their dopamine-producingbrain cells by the time they were diagnosed.
Even if one could continuously feed exactly the right amount ofdopamine directly into the brain, the patient might be symptom-freefor a while, but they would still have Parkinson's. After all, those braincells are dead, and the minute they stopped injecting the dopamine, orused too much, their symptoms would return. And it's not the sameas hooking up an insulin pump to your body to regulate the level ofsugar in your blood. Without some way of getting dopamine to crossthe blood-brain barrier, a pump would be useless.
In the early 1960s, Dr. George Cotzias of the Brookhaven NationalLaboratory in Long Island, New York, discovered that levodopa, achemical precursor of dopamine, can pass through the blood-brainbarrier; once in the brain, an enzyme (dopadecarboxylase) converts itinto useable dopamine. Although the levodopa (L-dopa in chemicalshorthand) does get past the blood-brain barrier, it doesn't do it veryefficiently. Dr. Cotzias found he had to give large oral doses of L-dopato get even a small amount into the brain because most of it wasbeing broken down while in the bloodstream. And any L-dopa thatwasn't broken down caused significant side effects, such as dyskinesia(involuntary random movements).
In 1969, Dr. Cotzias suggested that the levodopa needed a "partnercompound" that could keep it from breaking down so quickly inthe bloodstream. That led to the creation of a new molecule calledcarbidopa, a decarboxylase inhibitor that does the job. Fortunately,the carbidopa can't get past the blood-brain barrier, where it couldinterfere with the conversion of levodopa to dopamine in the brain.So by reducing levodopa breakdown in the body, but not getting intothe brain, carbidopa significantly increases the efficiency of levodopaand reduces the dose required to get good results. This also reduceslevodopa's unwanted side effects.
In the mid-1970s, levodopa and carbidopa were combined in ayellow, oval-shaped tablet called Sinemet that reached the market a fewyears later. When I was diagnosed with Parkinson's in1983, Sinemet hadbeen on the market for fewer than ten years. After I began taking it,I could once again do all the physical activities I'd been missing. Thediagnosis of Parkinson's and a prescription for Sinemet had given meback my life.
What now? I was at the midpoint of my life. Before going on withthe second half, I wanted to take stock of the first. After a rocky start, I'dlived up to most of my parents' expectations and hit many of the earlytargets I'd set for myself. After high school I managed to qualify for aNavy Hollowell scholarship to the University of Washington. It was agreat opportunity for me to get away from my parents and the constantcomparisons to my older brother. It was that constant comparison andcompetition with my brother that sent me in the direction of the Navyscholarship. He had applied for the Hollowell program but failed theeye test during the physical exam. I was more fortunate on the physical.My scholarship may have come as a surprise to some because I wassomewhat lazy and immature, a prototype of the classic underachiever,although the term wasn't invented until a few years later. I hated doingmy homework in high school but enjoyed showing off my test-takingskills. Teachers disliked my attitude, and my grades suffered. High-schooltrack and cross-country running were my salvation, becauseeveryone could see that I was willing to do the really hard work intraining. My teammates might be faster at the meets, but I was alwayschallenging them in the workouts. That tenacity and competitivenesseventually carried over into my schoolwork; I realized I could just dothe same thing in class that I did on the track. I had to be willing todo the busywork, not for the love of learning, but simply because myteachers expected it.
At the university, I ran on the cross-country and track teams, butnot under the scholarship program that supported the elite athletes. Iwas a typical "walk-on"—someone who really loved the sport but wasn'tgood enough to recruit at a Division I school. I couldn't be countedon to bring in points in the big meets. In the winter of my sophomoreyear, what I thought were shin splints turned out to be a stress fracturein my left leg that went undiagnosed for several weeks. A blood clotformed around the fracture, which pinched off blood flow to my lowerleg, and the calf muscle atrophied. The harder I trained, the worse itgot. Once the coaching staff noticed my shrinking calf, they sent me toa specialist, who found the clot and identified the stress fracture. I red-shirtedmy track season that spring. Red-shirting was a way to practicewith the team without competing in the track meets, thus preservingmy eligibility for another year.
I got hurt a few other times and failed to make the traveling squadas a junior or senior.
Continues...
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