Lake Mary man’s battle with Parkinson’s disease inspires others to live well.
The patient, dressed in an ill-fitting hospital gown, stood there in stunned disbelief as the doctor took off his white lab coat, folded it neatly over the back of a chair, rolled up his sleeves, and picked up a weighty two-by-four.
The doctor gave the beam a few practice swings, then hauled off and cracked the patient on the side of the head, sending him crumpling to the floor. He then...
OK, that’s not exactly what happened, but that’s what it felt like when Lake Mary resident John C. Alexander was told that he has Parkinson’s disease.
“It was like getting whacked in the head with a two-by-four,” confirms the retired salesman.
It took John a few weeks to recover from the shock, but when he did, he bounced back a better man.
John realized that having the progressive neurological disorder doesn’t have to be the end of the world. In fact, he believes people with Parkinson’s can thrive with the disease if they strive to live their lives with a positive attitude.
“I’ve always had a positive attitude,” he says.
John calls being diagnosed with Parkinson’s disease both a blessing and a calling.
“A lot of people are going to think that sounds weird,” he says. “It’s a blessing because of all the people I have met and the things I have learned to improve my life. And it’s a calling for me to reach out to other people and try to help them. Parkinson’s has launched me on an incredible journey.”
John, 66, started along his life-changing path eight years ago. Surprisingly, the shocking diagnosis came from a doctor who was treating him for sleep apnea. The doctor noticed John’s left hand kept shaking during the exam. John thought it was because of a shoulder injury.
“My doctor said, ‘What’s with that tremor,’” recalls John. “‘That’s a Parkinson’s tremor,’ the doctor told me. He wasn’t a neurologist, but he diagnosed me right away.”
A visit to an actual neurologist made it official, and John began his battle.
About one million people in the United States have Parkinson’s disease. Doctors are not sure what causes it, but symptoms show up when dopamine-producing cells in a part of the brain called the substantia nigra begin to die off. Dopamine regulates movement. Without it, patients develop tremors in their hands or feet, rigidity, slow movement, slurred speech, and problems walking.
John became determined to slow his disease’s progression. Although he remains hopeful for a cure, he started doing what he could to improve his life right now.
Two books by Michael J. Fox (probably the world’s highest-profile Parkinson’s patient) gave John inspiration – Lucky Man: A Memoir and Always Looking Up: The Adventures of an Incurable Optimist.
“I learned two things from those books – that Parkinson’s isn’t fatal. You don’t die from it; you die with it. And it’s a boutique disease, meaning everyone’s course is different. That was actually very comforting.”
John, who was up to 290 pounds at the time of his diagnosis, started to eat right and exercise. He began bike riding with a passion and built himself up until he was tackling group rides hundreds of miles long. He also completed several triathlons and climbed a mountain in Scotland. Along the way, John met several people he calls PD heroes. Among them are Davis Phinney, an Olympic cyclist, and Jimmy Choi, a contestant on TV’s American Ninja Warrior. Jimmy has also run in several marathons.
John marveled at how exercise helped them to thrive. His observation is backed up by science. New research shows that regular strenuous exercise can reduce Parkinson’s symptoms.
Another way to reduce symptoms is a groundbreaking new surgery that can tame the hand tremors and muscle cramps so often associated with the disease. It’s called Deep Brain Stimulation (DBS).
During DBS, doctors implant electrodes in the brain that regulate nerve impulses. It’s like a pacemaker for the noggin, all powered by a battery pack implanted under the skin. John underwent the surgery at the University of Florida, one of the top centers in the world.
His wife of 42 years, Laura, their son Brian, and daughter Jennifer supported him completely. John says the operation, which is good for 10 years, alleviated 90 percent of his symptoms.
“It turned out great,” he says. “I’m really pleased.”
After the surgery, John began speaking to audiences about ways to thrive with Parkinson’s disease.
“I tell them it’s not a death sentence,” says John. “I tell them there’s still plenty of life to be lived. You can actually thrive if you stay positive and do the right things.”
His advice to newly diagnosed people can turn the symbolic two-by-four of diagnosis into a toothpick:
- Get solid, up-to-date information about Parkinson’s disease.
- Become active. You don’t have to compete in a triathlon. Even a walk around the block done with effort can help.
- Seek out inspiration from others. Joining a support group can help you realize you’re not alone.
- Become an advocate. Raise money for research and work to raise consciousness about the disease.
“I joined the board of the Parkinson’s Association of Central Florida,” John says. “I helped to organize the walk that we do every year at Cranes Roost in Altamonte Springs. It raised $200,000 in the last three years.”
John details his inspiring story in his book, The Journey Begins with 1,000 Miles. The title is a reference to John’s successful pledge to cycle 1,000 miles in his first year with the disease. Since then, he’s been on many cycling treks and logged thousands of miles.
“John’s approach to his Parkinson’s disease is inspirational,” writes Rita Bornstein, Ph.D., the president emerita of Rollins College.
“I have marveled at his positive attitude, commitment to exercise, and embrace of new technologies,” continues Dr. Bornstein, a friend of John’s who enthusiastically provided a testimonial for his book. “His eagerness to share his efforts and experiments with other Parkinson’s patients has helped scores of people deal proactively with the disease. John’s book will enlighten countless others to improve their outlook and their lives.”
Author’s note: One of those people John has helped is me. Like John, I was diagnosed with Parkinson’s disease in 2010. Speaking with him has motivated me to consider Deep Brain Stimulation. His book has inspired me to do what I can to help myself and others thrive with the disease.
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