Thinking Big About Parkinson’s Disease

Larry Michael was trying to remember something and, when it suddenly came back to him, he snapped his fingers. It doesn’t sound remarkable until you know that Michael was only in his first three weeks of a specific exercise regimen to help him live with a diagnosis of Parkinson’s disease—and that Michael hadn’t been able to snap his fingers for years.

The Parkinson’s Foundation (www.parkinsons.org) feels it’s important for everyone to know a few facts about the disease. First, the image of a stooped old man with trembling hands doesn’t accurately represent the range of people and symptoms of the condition. Although statistically more common in men, it does affect women—and younger people as well. Second, the tremors often associated with Parkinson’s are only one category of symptoms. Although Parkinson’s is called a “movement disorder,” another entire category of effects are called “non-motor symptoms” and include loss of smell, mood and sleep disorders and many others. Third is that not everyone with a Parkinson’s diagnosis experiences all the possible symptoms, and how the disease progresses is unique to each case. And last, perhaps most important, is that we now have interventions that can drastically improve the lives of those living with Parkinson’s disease (PD).

The people with PD who attend Chris Pevia’s Parkinson’s Class at the Moore County Senior Enrichment Center talk about the effect of their disease-specific exercise in terms that would convince any skeptic. “It’s immediate gratification,” says Karen Wolf, a 59-year old who has been living with a diagnosis of PD for four years. “As soon as I finish class and walk out the door, I feel better.”

“Much better,” adds Ray Taylor, 81, a 15-year veteran of the disease.

Even Pevia himself seems impressed. “Honestly, the difference between how they’re walking before class and after class is dramatic. And not just over a class period, but over the weeks they attend.”

Right now, no one is sure why there are long-term as well as short-term benefits from PD-specific exercise. Despite the constellation of symptoms associated with PD, the underlying cause seems to be the body’s inability to produce enough—or any—dopamine, one of the brain’s most important neurochemicals. Fortunately there are groups of medicines that can help but, surprisingly, certain types of movement exercises are also remarkably effective. And they have no negative side effects. Only positive ones.

Someone living in the Sandhills area, if he or she receives a diagnosis of PD, would likely be referred to MaxMotion Physical Therapy in Pinehurst. There, they are lucky enough to come under the care of Dr. Laura Beck. Beck is the area’s only Board-certified Neurologic Clinical Specialist. Beck’s title doesn’t begin to do her justice. She is both acutely knowledgeable about Parkinson’s disease and consummately passionate about helping her patients.

“I like to see people as early as possible after they are diagnosed,” she says, “to get them moving and give them the right dosage of exercise. We teach them about using lifestyle changes to manage Parkinson’s.” She has infectious optimism. “And we have lots of ways to slow its development.”

Beck refers to a chart developed by Dr. Laurie Mischley of the University of Washington in Seattle. The information shows a definitive link between factors such as good nutrition, an active social life, regular PD-specific exercise and the improvement of long-term PD symptoms.

The word regular seems to be a critical aspect of the proven positive lifestyle changes. Patients who see Beck after an initial diagnosis are routinely scheduled to return for testing and re-evaluation in six months, but she realized early on that by itself wasn’t going to improve their quality of life. “Some people are good exercising on their own,” she says. “But many of us aren’t.” It seems as if five times a week is better than four, but six is better than five. And seven is best. That’s why Beck started holding regular classes, small at first, then larger, and finally it was more than she could do on my own. “I began to look for someone to collaborate with,” she says. “Someone caring who was willing to get more training in Parkinson’s-specific exercise.”

That collaborator turned out to be Chris Pevia from the Senior Enrichment Center, and the training came from Dr. Becky Fairley, who teaches through a program she calls PWR! Moves. The acronym stands for Parkinson’s Wellness Recovery, and Fairley describes it as “a PD-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements.”

It’s colloquially known as “amplitude training.” The thought behind it is that PD typically restricts person’s movement—shuffling steps, clenched hands, stiff arms, soft voice. Amplitude training gets them to do everything larger. In fact, Fairley’s PhD thesis was called “Training BIG.”

“It’s about recalibrating what the brain perceives as normal-sized movements,” says Beck. “Our brains are amazingly malleable, so with the right cueing, the right activities, and the right feedback, we can completely change the way someone is moving.”

Between Beck’s classes at MaxMotion and Pevia’s classes at the Senior Center, folks in the area dealing with PD have opportunities for group exercise six days a week and can find those that best correspond to their abilities. One of Beck’s class categories is called Rock Steady Boxing, a non-contact sport that’s proven to be at least as effective as it is novel. The benefits of this activity have become so well known that now there are three facilities in our area offering it.

“The socialization aspect of group exercise is healing in its own right,” Beck says. The group can be a safe space. Everyone there has Parkinson’s. There’s no judgment.

“One of the biggest things I’ve learned about working with my clients with PD is to expect more. I need to keep raising the bar. Personal growth and brain change occur outside someone’s comfort zone. Self-efficacy is huge. We need to believe in our ability to influence what happens to us. We all need to take an active role in our health.”

Mike Gilmer, 74, who takes Pevia’s PD class, has four important take-aways from what he’s learned. “Exercise, exercise, exercise…and think big. Stepping high, reaching high, extending yourself to your full limit.”

He’s obviously learned well from his instructor. “In here,” says Pevia, “we do things as big as possible.”

Gilmer’s classmate, Ray Taylor, doesn’t mind thinking big, too. “I used to be a competitive sailor on the Chesapeake,” he says. “When we moved here, I had a boat at our home in Seven Lakes. I no longer had the balance for it, so I had to sell it. But my balance is starting to improve from taking this class.” He gives a devilish smile. “I told my wife I’m almost ready to buy another boat.”

Stats

• About 930,000 Americans are living with Parkinson’s disease, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and ALS.
• Approximately 60,000 Americans are diagnosed with PD each year.
• More than 10 million people worldwide are living with PD.
• The average cost of Parkinson’s medication is $2,500 per year, and surgery related to PD can cost up to $100,000 per patient.
• Men are 1.5 times more likely to have Parkinson’s than women.
• By 2030, 1.2 million people in the U.S. will be diagnosed with PD.