My friend Lee, a retired high school science teacher, has Parkinson’s disease.
A million and a half Americans share his plight, and 60,000 new cases are diagnosed every year.
Though Lee has Parkinson’s, Parkinson’s doesn’t have Lee.
“It is what it is,” he says philosophically. “I didn’t ask for it, but I have it, and it’s up to me to determine how I’m going to react. I can’t complain about things I can’t control. I must move forward and live my life to the fullest.”
Lee has the right attitude. For many Parkinson’s patients, depression is a daily companion.
Parkinson’s is insidious. I have some familiarity with it. My father had it the last 10 years of his life. I watched as it slowly robbed him of his dignity. He went from being a vibrant senior who loved exercise, music and literature, to a broken man who couldn’t walk, turn over in bed or feed himself.
It was sad.
Lee, however, is anything but sad. Diagnosed five years ago, he lives an active, rewarding life.
“Life offers no guarantees,” he says. “It’s up to us to play the hand we’re dealt. We can complain, but what good is that?”
Lee finds comfort and inspiration in the words of the Serenity Prayer: “God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.”
Parkinson’s is a degenerative illness that has no cure, though research could significantly alter things in the future. You may have heard of the disease through the considerable efforts of actor Michael J. Fox, who’s had it for two decades.
Fox was diagnosed early in life (he had “young-onset” of the disease).
Most Parkinson’s sufferers are diagnosed between ages 55 and 65, and two-thirds are males. There may be a genetic link, and possibly an environmental one.
Parkinson’s is a brain disorder that occurs when certain nerve cells die or become impaired. The cells produce the chemical dopamine, which facilitates smooth, coordinated body movement.
Signs of the disease include tremor or shaking, slowness of movement, rigidity or stiffness, and balance problems.
It can also include a shuffling gait, and muffled speech or diction problems. Cognitive issues may be realized, including dementia. My father had dementia. In his final years he had difficulty communicating. His struggle to find words for his thoughts was painful beyond description.
I hate the disease.
Parkinson’s patients are naturally in touch with their bodies, and are acutely aware as symptoms subtly — and inexorably — advance. They constantly monitor how their bodies feel and react. A slight stumble while walking, or a fleeting balance issue — which would generally be ignored by a healthy person — is a marker for a Parkinson’s sufferer.
The primary manifestation of Lee’s illness is a pronounced tremor of both hands, and also a barely perceptible stammer. But the disease moves forward relentlessly as it short-circuits the patient’s brain. For most, the resultant damage becomes catastrophic.
Lee chooses to push back. He and his wife, Nancy, go to the gym twice a week. He also does yoga and walks daily. And he takes his medication.
Lee and Nancy enjoy traveling. In recent years they’ve taken trips to Europe, Canada, Alaska and throughout the U.S. They’re planning a Mediterranean cruise.
“We’re traveling while we can,” Nancy says pragmatically. “We’re creating memories.”
Lee belongs to a Parkinson’s support group at Saddleback Church in Lake Forest.
“It’s helpful to be around other Parkinson’s patients who know what you’re going through,” he says. “Outside friends and family can’t know how I’m feeling, and I don’t like to burden them. But, support group members are transparent.
“We share information, and we give advice and assistance to one another. We also pray for each other.”
Improbable though it may seem, Lee feels his situation has been a blessing.
“I’ve met many other Parkinson’s patients who’ve become my good friends. We share a bond that we wouldn’t otherwise have. Also, the disease has helped me to savor — with more intensity — life’s big as well as small moments.”
Lee is my inspiration and role model. I was diagnosed with Parkinson’s 3 1/2 years ago. I no longer live life out there in the future somewhere.
It’s moment-to-moment, baby.
JIM CARNETT lives in Costa Mesa. His column runs Wednesdays.