Face to Face
Living Laboratory
Retired neurologist Terrance Capistrant is living well with Parkinson's disease--and teaching others to do the same.
By Kim Kiser
As he walks through the Parkinson’s center at Bethesda Hospital in St. Paul that’s named for him on a mid-April morning, retired neurologist Terrance Capistrant, M.D., greets patients he hasn’t seen since he left for Florida three months ago. “You hardly need that cane any more,” he says to a woman who is walking with a staff member. “One therapy session and you’re ready for football,” he tells a man.
Capistrant knows them—their stories, their caregivers, and the extent to which they are affected by the disease. But unlike most neurologists, he knows something else about these patients: the day-to-day challenges they contend with.
To look at Capistrant, 72, you wouldn’t guess he has been living with Parkinson’s for 15 years. His walk is brisk and determined, his posture erect, and his handshake firm. It isn’t until he sits down that his right foot exhibits the disease’s hallmark tremor. “This is what happens when I miss my pills,” he says, explaining that he took them about 20 minutes late. As the medications kick in, the tremor subsides.
The importance of taking medications at precisely the right time is one of the many lessons Capistrant imparts to patients. He also pushes exercise, crediting it as another reason for his ability to manage the disease. “Most patients, if you put them on meds and they’re active, they don’t change much. But if they’re inactive to start with—and that’s quite a few—they have to be encouraged,” he says, admitting that he suffers from the same “dread of exercise” as others but pushes himself to walk or do something active nearly every day.
Capistrant says he never expected to become a Parkinson’s expert, much less a role model to those who are living with the disease. But for the last five years, he has devoted his time and energy to helping others gain from his experience. “My emphasis is on practical application,” he says. “I’m trying to make the best of what’s available to patients.”
Subtle Signs
A St. Paul native, Capistrant entered medical school at the University of Minnesota during the early days of the U.S. involvement in Vietnam and became intrigued by the logic and precision of neuroanatomy. He also was influenced by legendary teacher A.B. Baker, M.D. “I was interested in neuroanatomy, but if Baker wasn’t there, I probably would have stopped there,” he says. After graduating in 1963, Capistrant went on to do an internship at the University of Oregon in Portland and then came back to Minnesota to do a neurology residency under Baker.
Because he deferred military service, Capistrant spent two years after his residency working for the U.S. Public Health Service in Washington, D.C. While monitoring research at field sites around the country, he became interested in stroke and designed a research project that was conducted at St. Paul-Ramsey Hospital (now Regions Hospital) after he returned to Minnesota. The study tested whether facial thermography could accurately predict narrowing of the internal carotid artery. “You could tell by the thermograph picture that there was a dark area on one side of the forehead. That indicated decreased blood flow in the carotid,” he says. The technology was useful, but ultrasound ultimately proved to be more convenient and less expensive.
Capistrant went on to become a founding partner of Neurological Associates of St. Paul in 1978. One of the partners, Paul Schanfield, M.D., says until then the focus of neurology had been inpatient care. “He moved us into what became modern-day medicine, which was outpatient-focused,” Schanfield says. In addition, Capistrant was instrumental in changing the way stroke patients were treated in the hospital. In the early 1970s, “a lot of neurology patients, especially those with stroke, were neglected,” he says. “It was an effort to take care of them because many were paralyzed.” He helped convince leaders at Bethesda to dedicate a ward to patients with neurological conditions and recruited some of the best nurses to work in that unit. Capistrant’s idea was to get patients into an active rehab program as soon as possible. He noted this approach reduced the incidence of blood clots in the lungs and legs, prevented bedsores, and reduced the length of hospital stays.
But as Capistrant was making his name in the Twin Cities medical community, he began noticing a dull ache in his right forearm. Writing became difficult—and painful. After a particularly challenging case, in which he performed a lumbar puncture on a patient with a shunt in his brain that had stopped functioning, he knew something was terribly wrong. “Under stress, my handwriting became very small—micrographia, they call it.” Capistrant recognized the arm stiffness and change in handwriting as early signs of Parkinson’s disease and diagnosed himself at age 58. “Initially, I was very depressed,” he recalls. “Usually, in 15 years, Parkinson’s patients are in a nursing home. … I was convinced I would take the average course of deterioration.”
With that in mind, Capistrant decided to become a living laboratory for Parkinson’s research. Rather than immediately starting on levodopa, which relieves symptoms but is associated with dyskinesia after several years of use, he decided to build on what he had learned from his stroke patients and Parkinson’s patients who seemed to best cope with their disease and emphasize exercise. “Most general neurologists still don’t understand the level of exercise that’s necessary,” he says. Today, he walks three to four miles at least three times a week; plays golf, walking and carrying clubs for most of the game; and hunts and fishes.
He takes a number of medications: entacapone (a COMT inhibitor), a short-acting and a longer-acting form of levodopa; pramipexole, a dopamine agonist; propranolol, which treats high blood pressure and happens to quell tremor; and rasagiline, an MAO inhibitor that has shown promise in slowing the progression of the disease. In addition, he takes two supplements: creatine and CoQ10, both of which are the subject of national trials. “When I was a practicing neurologist and patients would ask me about taking CoQ10, I would say there’s no evidence that it helps. But now, as a patient, I sing a different tune. I elect to go on it, and when it’s proven that there’s no evidence it works, I’ll stop.”
Something appears to be working for Capistrant. “Whether the disease’s slower progress is due to the disease itself, variation from patient to patient, the drugs, or something I’m doing, I can’t really say,” he explains. “I don’t know scientifically why my disease has progressed so slowly, but I’m grateful.”
A Short-Lived Retirement
Capistrant retired from practice in 1998, three years after his diagnosis. About six years later, Robert Moravec, M.D., then medical director of St. Joseph’s Hospital, which along with Bethesda is part of the HealthEast system, called him from the Phoenix airport after visiting the Mohammed Ali Parkinson Center. He thought St. Paul needed such a center and that Capistrant was the person to start it. (The Struthers Parkinson’s Center served patients in the Twin Cities, but few from the east metro went to the Golden Valley facility at the time.) “I said, ‘Let me think about it,’” Capistrant recalls. “When I told my wife, she said, ‘You’re doing so well, why don’t you teach others?’”
Capistrant knew the importance of teaching patients about their disease. He also knew how difficult it was for physicians to spend time answering their questions. “With today’s low Medicare reimbursement, neurologists lose money on lengthy discussions; however, Parkinson’s patients do much better if things are explained. The better understanding patients have of their disease, the more likely they are to take their pills on schedule and exercise,” he says.
He studied what other Parkinson’s centers offered and took a proposal to the leadership of Bethesda Hospital, which specializes in stroke, brain injury, and coma recovery. “We had a lot of built-in expertise in treating neurology patients. He wanted to translate that to Parkinson’s,” says Michael Sandmann, director of physical medicine at the hospital.
To get the center started, Capistrant presented the hospital with a donation and approached former colleagues about volunteering to see patients there on their days off. He asked Sandmann to build a PT, OT, and speech therapy team and to help design an exercise room that would be more like a fitness center than a hospital physical therapy facility. He also brought on nurse practitioner Kathryn Gilbertson to start a support group and to educate patients about Parkinson’s and the problems that often go along with it—constipation, urinary issues, postural hypotension, fatigue, apathy, depression, and anxiety. Soon after, psychology, neuropsychology, and geriatric services were added. “He wanted this to be a team approach,” says Gilbertson. “That’s hard to do in a typical office setting.”
A Connection to Patients
Although the staff handles the operations of the Capistrant Center for Parkinson’s Disease and Movement Disorders, its founder remains an integral part of it. Capistrant recently recruited its first medical director, Jawad Bajwa, M.D., and he raises funds to pay for its exercise and support groups, tai chi and ballroom dance classes, and clay arts program—“all the things that make the center very effective but are nonreimburseable by and large,” he says.
Capistrant also spends nearly every Wednesday at the center cheering people on as they exercise, answering patients’ questions, and lending support to spouses and caregivers. In addition, he speaks to groups and teaches a class to people who are newly diagnosed. “He’ll bring up problems that they’re experiencing and that he has experienced,” says Gilbertson, who leads a support group. “He’ll talk about how you don’t feel like exercising, but you have to because it’s so beneficial. He can relate on that personal note.”
Sandmann says Capistrant connects with patients in a way other staff can’t: “They respect his knowledge as a neurologist, and he takes time to respectfully answer questions from people who are just beginning to understand their disease and what they can do with it. He respectfully answers questions about treatments that he thinks people shouldn’t be spending their time and money on, and he talks it through with them without dismissing their interest in it and shares some of the research about what works and what doesn’t work.”
Sandmann says patients leave Capistrant’s class feeling hopeful. “He tells them how compared to the treatments available 30 years ago, 20 years ago, even 10 years ago, there’s so much more that can be done now to help people live an enjoyable life.”
One of Capistrant’s goals is to find a way to make those treatments more accessible. He explains that his regimen costs hundreds of dollars a month. “To lack the best care because of finances is a real tragedy,” he says. He’s vowed to work with drug companies to make treatment more affordable.
He’s also vowed to continue showing up at the center “until they take my driver’s license away.” With every step he takes, he shows patients that a Parkinson’s diagnosis isn’t the end of the world. “There’s no question,” he says, “if you walk in the shoes of a person with Parkinson’s, they’re more likely to believe what you’re talking about.” MM
Kim Kiser is associate editor of Minnesota Medicine.