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St. Paul Parkinson's doctor marks 25 years living with the disease

Jacque and Terry Capistrant in their Lilydale home April 28, 2018. Terry, a prominent neurologist, diagnosed himself with Parkinson's disease 25 years ago. (Deanna Weniger / St. Paul Pioneer Press)​

LILYDALE, Minn. — Sitting in his Lilydale home overlooking the Mississippi River last week, Dr. Terry Capistrant struggled to describe how he first knew he had Parkinson's disease.

He was 55 years old, preparing to do a spinal tap on an 18-year-old man.

"It was very stressful," he said.

When he finished, he sat down to write about it in the patient's chart. He noticed how small and cramped his handwriting was, and it gave him a sick feeling in the pit of his stomach.

This symptom, called micrographia, brought on by stress, was one he knew all too well. He had spent his career in neurology, treating many Parkinson's patients. And now he was showing symptoms of that same disease, one that has no cure.

"We were both depressed," said his wife, Jacque (pronounced Jackie), about the diagnosis.

"It was shock and despair," said his son Ted Capistrant. "I assumed — and I was wrong — that it was a death sentence."

Now, 25 years after that first symptom made itself known, Capistrant, who turned 80 in April, is still fighting. April also happened to be Parkinson's Awareness Month.

"He's one of the best patients," said Dr. Laura Li, director of the Capistrant Center for Parkinson's Disease and Movement Disorders at Bethesda Hospital in St. Paul. "He has shown the benefits of persistence, positive attitude, regular exercise and great family support. He's an extreme example for patients on how you can do better."

No cure for Parkinson's

Parkinson's disease was first medically described as a neurological syndrome by James Parkinson in 1817.

Nerve cells in the brain that make a chemical called dopamine signal the part of the brain that controls movement. Parkinson's disrupts that dopamine production, making it difficult for patients to move their muscles smoothly.

After getting his medical license in 1963, Capistrant began his practice in neurology with two colleagues that grew to become the largest neurology group in the Twin Cities. Neurological Associates of St. Paul treated brain-related issues such as stroke, sleep disorders and movement disorders such as Parkinson's.

Capistrant began to see more and more patients exhibiting Parkinson's symptoms such as tremors, stiff muscles, slow movement, problems with balance, micrographia and a soft voice.

At that time, he suspected that his patients, many of whom were farmers, had gotten the disease from the pesticides spread on their fields, a theory he later abandoned after studying new research in genetic mutations.

Capistrant said his diagnosis helped him truly understand what his patients were going through.

"I had one patient that had told me, 'It's like I have a motor running inside me all the time,' " he said. "Now I know what she meant."

Since there is no cure for Parkinson's, Capistrant focused on helping his patients live better-quality lives. He stressed exercise and healthy eating as ways to keep from exacerbating the symptoms.

Exercise, while difficult for a Parkinson's patient, helps the dopamine linger longer in the synapses, allowing the patient to better control his body's movement.

Patients can also take drugs designed to boost dopamine levels as part of their treatment.

According to the National Parkinson's Foundation of Minnesota, about 1 million Americans live with Parkinson's disease.

While Parkinson's is degenerative, it is not fatal. Those with the disease can have the same life expectancy as anyone else. In its advanced stages, however, the symptoms can lead to life-threatening complications such as falls that cause fractured bones or pneumonia.

Forced to retire

In 1998, at the height of his career, Capistrant was forced to retire. The symptoms of Parkinson's had progressed to such a degree that he was unable to work.

But he wasn't the type to settle into the rocking chair and accept his fate. He decided to become the poster child for managing his disease, in order to encourage his patients not to give up.

After his retirement, Capistrant served on the admissions committee of the University of Minnesota Medical School, the scholarship committee of the Minnesota Medical Foundation, the board of the Ramsey Medical Society Foundation and as president of the Senior Physicians Group of the Ramsey County Medical Society.

He was approached about starting a center at Bethesda dedicated to Parkinson's patients and those suffering from other movement disorders.

Capistrant was hesitant at first, but his wife saw it as an opportunity to share what he had learned about living well with the disease.

He agreed, but did not want his name on the center. He was overruled, and in 2005, the Capistrant Center for Parkinson's Disease and Movement Disorders was opened.

The center has a team of doctors and therapists who help meet the needs of 4,000 patients and their caregivers each year.

Capistrant often visited the center to talk with the patients and let them know he understood what they were going through.

"He is loved by our patients," Li said. "He would meet patients and their families to provide personalized support. He participated in memorial services. Both he and his wife are very involved as advocates for the patients."

Besides helping to found the center, the Capistrants also help fund it through the Terrance D. and Jacqueline J. Capistrant Parkinson's Foundation. Their son Ted chairs the foundation. They also help by volunteering with fundraising events such as benefit dinners, golf tournaments, walks and the Festival of Trees.

The support of good friends

Ted Capistrant said that over time, he has found a silver lining in his father's diagnosis.

Being driven and dedicated can be hard on the family. Terry was often absent from the daily schedule, but made up for it, Ted said, with fun hunting, fishing and sailing trips.

Terry's early retirement allowed him several years with his family, especially with Jacque, that may not have happened if he had been healthy.

"This is a twist that turned into a positive," Ted said. "I'm actually grateful for how it's turned out."

The family — three sons and six grandchildren — haven't been alone in their struggle. Along the way, good friends have pitched in to help.

Long-time friend Mary Kaase, who said Terry reminds her of her own father, would help the Capistrants pack up for the couple's annual trip to Florida until Terry could no longer tolerate the travel.

"The disease really takes its toll," said Kaase, of White Bear Lake.

It takes a toll on the caregivers too.

"My mother hasn't slept for seven straight hours in 20 years," Ted said. "She's a 24/7 caregiver."

Besides administering meds every three hours, including a 2 a.m. pill, Jacque recently started analyzing food labels when Capistrant became gluten- and lactose-intolerant.

For his 80th birthday, Kaase found a bakery that makes treats Capistrant can eat. She bought him cupcakes, cookies and brownies, which, she said, he ate with gusto.

A few days later, she got a card from him that simply said, "Thank you," written in Capistrant's shaky handwriting.

"It probably took him a half an hour to write that," she said. "But I will treasure that card forever."