In 1971, when John Ball was twenty-seven, he noticed his left toes curling under as he walked home from the grocery store. “This shouldn’t happen,” he thought. He was young and athletic—a runner. He didn’t have a tremor. Parkinson’s disease was the last thing his doctors suspected. It took twelve years for him to get the diagnosis and when he did, in 1983, there was no official term for “young onset” Parkinson’s (YOPD).
Forty years ago, when it came to Parkinson’s, no one was talking about exercise. His doctors told him, “Go home and find a comfortable chair.”
John started running competitively in 9th grade. His older brother had been on the cross country team in high school and John teases that he joined, in part, to “show up my brother.” He wasn’t big enough for football; he found baseball too slow. And running was a solo effort, something he could do by himself. By the end of his first cross country season, he had a Varsity letter.
At the University of Washington, John ran competitively, too, attending on an ROTC (Reserve Officers’ Training Corps) scholarship, a college program that prepares students to be commissioned officers (in his case, in the U.S. Navy). It was 1966 when he went to Pensacola, FL, to get his wings as a naval pilot. It was a precarious time for the United States; fighting in Vietnam was heating up and the U.S. was divided: Should we be fighting this war?
While John was in training, he was invited to join a top secret squadron, VO-67, whose clandestine mission was to bomb Laos and Cambodia. “We weren’t at war with Laos and Cambodia,” John said. “This was illegal.” He rejected the offer. The squadron’s leader tried to court martial him and he declared himself a conscientious objector. He was the first naval officer to be granted that status. But John loved flying, and he was good at it, so the Navy kept him in the service, where he flew medical evacuations in and out of Vietnam.
For a year after he left the Navy, in 1970, John rode a motorcycle through Europe and North Africa, eventually returning to the U.S. to get a Master’s degree in English. (John has published two books.) To describe him as active is an understatement. So when the first signs of what John would later come to know as dystonia started appearing in 1971 as he walked home from the grocery store, he noted it, but dismissed it as a cramp.
Because John didn’t fit the “profile” of someone with Parkinson’s, his neurologist was reluctant to officially label his disease. But from the first time John took a Sinemet (Carbidopa/Levodopa) tablet, they both knew: “I felt immediately better,” John said.
John had seen what Parkinson’s could look like. His mother-in-law, a Holocaust survivor in her late 70s, had been living with Parkinson’s for decades by the time he met her. “She was a tough lady,” John said, “a Holocaust survivor.” But by the time John knew her, she was “severely handicapped by her disease.” Frequently, they had to strap her to a chair so she didn’t fall and break something. “I knew I couldn’t do that,” John said. “I couldn’t just sit in a chair and wait.”
So the day after he took his first Sinemet tablet when, finally, his toes weren’t curled, he did what he had always loved: he went for a run on the beach. “It was probably the best thing I ever did,” he said. He’s been running ever since.
Three months after that first run on the beach, John ran a 5k race. By his third 5k, he got third place. “It was a small, local event,” he said, “but it told me I wasn’t that far off my peers.” Six months later, he ran his first half marathon.
“I hadn’t intended to run a half marathon,” he said. At the time, his son was entering kindergarten and John remembers waiting in line to talk to school officials. The guy in front of him wore running shoes that were “worn to hell; the soles were completely worn off, they were ratty looking.” John asked him: Are you a runner? He was, and he invited John to join him that weekend for a 10k run in Long Beach, CA. When he showed up, he realized there was no 10k race; this was a full 13.1 miles, or double the distance he had expected. “By the end,” John said, “my nipples were bleeding, my thighs were rubbing together.” He was undeterred. He came back the following year and beat his time by 20 minutes.
John kept going. Thirteen years after his diagnosis, when John was fifty-one, the company he worked for (Honda) took over the corporate sponsorship of the LA Marathon. Everyone in his company was “training for the marathon in some way,” he said, “whether it was being part of the support system, driving the lead cars, dispersing water. I thought, if ever there was a good time to run my first full marathon, this was it.”
Since then, John has run 25 marathons. He ran his last half marathon two years ago, at age seventy-eight.
Recently, John attended PMD Alliance’s Renew! Retreat® in Mission Viejo, CA, a one-of-a-kind workshop designed with two simultaneous tracks: one for care partners and adult children and one for those with movement disorders. He happened to be sitting at a table with a newly-diagnosed 30-year-old woman. She was young and uncertain of what was ahead. John said, “She’s facing what I was facing; she was diagnosed at 30. My symptoms started at 27. I liked being able to tell her that I’ve had Parkinson’s for over 50 years. It’s helpful to know there’s someone still functional at eighty.” He told her about his life, how he’s lived it “to the fullest, with or without Parkinson’s. For me, it’s a challenge, but it’s not a deterrent.”
“We know a lot more about Parkinson’s today than we did 50 years ago,” he said. Laughing, he added, “I told her, ‘It’s the best time ever to have Parkinson’s.”
“Everybody in life faces challenges,” John said. “I’m not unusual. There are at least a million people in America that have Parkinson’s. I have friends now that have completed more than 100 marathons with Parkinson’s.” In 2010, a woman with Parkinson’s named Rhonda read John’s book, Living Well, Running Hard: Lessons Learned from Living with Parkinson’s. Inspired, she decided to start running. She’s now finished over 108 marathons. “People are realizing what I did, and they’re taking that notion and extending it far beyond what I accomplished,” John said.
“Things are changing for me,” John admits. He’s having more trouble speaking. He likes to speak at Parkinson’s support groups and, often, he has to stop mid-sentence now to take a break. “I’m 80 years old, so what the heck?” he said, laughing. “It’s more difficult now. I’ve got a hip that needs to be replaced. My spine is misaligned and a disc in my lumbar spine is gone. But that’s just life. As long as it goes on, I’ll be happy.”
Today, John still hits the pavement. Every Sunday, his former marathon-training buddy, Mark, joins him for a two to three-mile walk.
John believes his secret to living well is simple: “Eat right. Exercise. And have a great attitude toward life.”
“We all face challenges,” he said. “Live your life anyway.”
