Parkinson’s compresses you, Bruce Wright says of the disease he’s lived with since 2005. It makes your life smaller, slower and more careful.
“It makes you want to take the small steps and be safe.”
The hospital chaplain thrives on being able to easily flow through his days. But this progressive neurodegenerative disorder steals his ability to control motor functions, and it picks away at his confidence day after day after day.
Until recently, he thought drugs were the only way to manage Parkinson’s. But then he signed up for an exercise-like physical and occupational therapy that resembles a hyperbolic drama class. Therapists and patients face off, mimicking one another’s sways, bends, extravagant arm swings and grand vocal statements.
The theatrics go on like this four times a week, an hour at a time, for a month. Wright says the over-the-top moves make the tedious physical activity enjoyable and improve how his mind and body feel.
“It’s the only thing that’s made an impact on my life and my disease,” he says.
Parkinson’s patients feel robbed of their sense of space and movement. This “Loud and Big” therapy helps the brain reclaim skills lost when the body’s dopamine-producing cells are damaged, says Margie Moore, Wright’s physical therapist at Florida Hospital Tampa.
The constant repetition builds physical strength and endurance. But this kind of therapy also emphasizes how the brain is critical to maintaining and improving patient health.
“We’re retraining the brain,” Moore says. “That’s where everything begins.”
Therapy, walking, even bowling are huge boosts to Maria Johnson, 63. The Lutz resident, diagnosed with Parkinson’s in 1995, knows she has to “move it” or lose control to the tremors, slowed movement and speech, and rigid muscles that characterize Parkinson’s.
“For some reason (the therapy) makes you remember,” she says.
In just the past decade, doctors and therapists have embraced the idea that brain injuries and disease aren’t a therapeutic dead-end, says Terry Ellis, director of the Center for Neurorehabilitation at Boston University.
It’s a major shift in the treatment of Parkinson’s, which affects roughly 1 million Americans, she says.
“We used to think that the brain was not modifiable, that when you were born, you were hard-wired,” Ellis says of therapies that also help people recover from stroke. “We have so much more potential for recovery than we had before.”
Parkinson’s patients today still depend on medication for the maintenance of their disease, says Theresa Zesiewicz, a University of South Florida neurology professor. But they also are likely head to therapy long before they struggle with gait and balance.
“We’ve realized you really need to push the core strength and physical therapy from the beginning,” says Zesiewicz, who hands every one of her patients a prescription for medication and therapy or exercise.
She credits patient support groups with pushing the power of exercise and therapy programs such as the “Big and Loud” program at Florida Hospital. Zesiewicz suggests patients try tai chi, walking, tandem bike riding or anything else that can help build core muscle strength.
Leg control is a big issue, but it’s important patients remember Parkinson’s affects the whole body, “not just from the knees down,” she says.
Zesiewicz says you also can’t underestimate the emotional boost that comes from exercise and therapy. About 50 percent of Parkinson’s patients deal with depression, triggered by chemical changes the disease makes to the brain.
Though more research is needed, most doctors agree that exercise improves the mood of Parkinson’s patients, she says. Swanson says at the very least it lifts away the frustration when you feel “like somebody glued your feet to the floor.”
“It’s exciting to know you can slow down the progression,” she says.
Wright, the hospital chaplain, says physical therapy is the most uplifting experience he’s had related to a disease he can’t conquer. It helps him look into and see future possibilities, regardless of whether a cure for Parkinson’s is ever found.
“There’s hope,” he says. “As long as there is hope that I can do what I’ve done most of my life, I’m OK.”