Twenty years ago John Schofield went to see his doctor because of tendonitis.
During the examination, Schofield mentioned that his thumb and forefinger also felt stiff.
Little did he know those words would lead to a life-changing diagnosis.
Within days Schofield, then 33 years old learned he had early-onset Parkinson’s disease.
“I’d heard about it, but I didn’t know what that meant,” he said. “But I knew it was bad because everyone I talked to got quiet.”
The reaction that Schofield encountered back then is fairly standard, even today.
Parkinson’s is a degenerative disease that impairs movement and emotional responses. In time, it leaves many patients completely disabled and as of yet there is no known cure.
A total of 1 million people in the U.S. live with the disease, according to the American Parkinson’s Disease Association. The group is celebrating Parkinson’s Awareness Month in April.
They hope to better educate the public about Parkinson’s and expand the conversation around a diagnosis that moves beyond what might be perceived as a bleak narrative.
Parkinson’s Destructive Force
Once Parkinson’s takes hold, it causes a decline in dopamine production in the body.
The hormone controls motor and nonmotor functions. The deficiency results in tremors, stilted walking, and uncontrollable movements. Less noticeable symptoms include constipation or loss of smell.
“By the time the motor symptoms appear, 60 to 70 percent of the dopamine is gone,” said Laura Lieb, a nurse practitioner who specializes in Parkinson’s care at the University of Alabama at Birmingham. “It truly affects multiple functions in the body.”
Despite the possible outcome patients and caregivers say a Parkinson’s diagnosis doesn’t mean life is over.
Rather, they say, it calls for an adjustment of expectations. This mental realignment is a crucial weapon in the arsenal that Parkinson’s patients must unpack every day. Without it, all the medicine in the world won’t add up to much.
“It’s a very livable disease,” Schofield said. “But every day is a new normal.”
Young and Old
Only 10 percent of patients are considered “early-onset” like Schofield or actor Michael J. Fox, who was diagnosed at age 30.
Arthur Levitt, on the other hand, is more typical of someone living with Parkinson’s. The former shop teacher, who lives with his wife Fran in New York, received a diagnosis three years ago at age 70.
The impetus for that fateful visit was Levitt’s gait. For months, his daughter observed it be unsteady and off balance, and finally convinced her dad to see a doctor.
“After I was diagnosed it took time to settle in,” said Levitt, “but I decided I’m not going to let it defeat me.”
He counts himself lucky because he doesn’t have tremors.
“It still feels difficult to walk most of the time, but I still walk,” he said.
Since his diagnosis he and Fran have adjusted to their new reality. The couple continues to travel, only now they go on cruises instead of walking tours. They also attend a support group, which Levitt said, offers hope and inspiration.
“I look forward to the monthly meetings,” he said. “I like to stay informed.”
Levitt acknowledges there are some in the group with greater disability. In particular, he mentions a former gymnast, now in her 40s, who is in a wheelchair.
The thing about Parkinson’s is that it affects people differently, Lieb noted.
“There is a quote and I don’t know who to attribute it to, but it says ‘Once you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s,’” she said.
Patient’s reactions run the gamut, Lieb added, from immediate relief to total devastation.
Once a patient has been emotionally assessed, doctors prescribe a number of therapies — both mental and physical — and medication. For some Parkinson’s patients elective brain surgery can stave off many symptoms.
According to Lieb one of the most important components of care is exercise. It’s absolutely crucial that people with Parkinson’s maintain balance and flexibility.
“We know it provides benefits to the quality of life,” she said.
Mental grit is also a necessity. Take Schofield.
In the prime of adult life he was diagnosed with a debilitating disease that has no known cure. Yet Schofield, now 53 years old, never retreated.
In the beginning Schofield said he struggled, enduring a litany of emotions. He eventually came to the conclusion that it was up to him, not Parkinson’s, to determine what kind of life he wanted to lead. He’s been married to his wife Suzie for 12 years and the couple has a 7-year-old son.
For nearly two decades he’s worked as the creative director of WongDoody, an award-winning advertising firm. Last year he received the Silver Medal Award from the American Advertising Federation, one of the industry’s highest honors.
It is Brain Surgery
Schofield credits his success to a network of family and friends. He also credits the life-changing brain surgery he elected to have 10 years ago.
At that time Schofield was ingesting a daily “medical cocktail” to control his symptoms. When the drugs would wear off, he was off, so to speak, and unable to function. Basic self-care such as brushing his teeth and combing his hair became nearly impossible.
The surgery required doctors to insert electrodes into his brain that slowed down his motor impulses. For this procedure, Schofield had to be awake. The entire process was featured on National Public Radio (NPR).
“Patients are awake because we need to assess them,” Lieb said, who used to work as a neurosurgical nurse. “It’s quite amazing.”
Schofield can attest to that. He recalled being on the operating table.
“Mine was life changing,” he said. “My hand was flopping like a carp, but at three volts it stopped moving all together.”
Continued medication and therapy over the years have helped to stabilize Schofield’s symptoms. Today he walks, rides bikes and motorcycles, and drives his son to school.
About 18 months ago his speech started to falter. Now when he gets home from work, Schofield isn’t his usual talkative, humorous self, his wife Suzie explained.
“It takes a lot of effort to put together a sentence at the end of the day,” Schofield said.
Suzie said it was their ability to share stories and laugh together that drew them to one another. To watch that slip away is difficult.
“We are slowly losing that part of our relationship that we had,” she said.
Still, the couple remains committed to navigating their way through these changes. Schofield summed up the philosophy that has kept them going for two decades.
“Don’t concentrate on what you can’t do,” he said. “Concentrate on what you can do.”