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People often associate tremor with Parkinson’s disease (PD), a progressive neurodegenerative disorder originally named “shaking palsy,” but did you know that one-quarter to one-third of patients don’t exhibit this symptom? At Wednesday night’s event for Brain Awareness Week, “On the Mind: Parkinson’s, Movement, and Dance,” we heard from top NYU doctors about symptoms, diagnosis, and treatment, but also from a PD patient on his experience with disease and how dance helped him come to terms with his diagnosis.
There are four cardinal clinical features of PD: rest tremor, slowness, stiffness in muscles, and balance problems, said Andrew Feigin, M.D., director of the Fresco Institute at NYU Langone Health. Not everyone gets all four, he said, but people with Parkinsonism have two or more, and are often diagnosed with PD. Because it is a progressive disease, these symptoms can lead to other troubles, including quiet or slurred speech, difficulty swallowing, and shuffling gait, as well as non-motor features such as depression, impulse control, and sleep disturbances.
Actor Michael J. Fox and the late boxer Muhammad Ali, both diagnosed with PD, dramatically increased public awareness of the disease in the past few decades, but it was first discovered in the early 1800s by James Parkinson. Around 1 million people in the U.S. and 6 million people worldwide have PD.
The disease predominantly affects older people (average onset is 60), but in rare instances can affect children and young adults, said Feigin. Fox is an example, diagnosed with PD at age 29. The disease usually progresses over 10-20 years, Feigin said; with the advent of dopamine medications to replace the dopamine loss in the brain caused by PD, there was no change in longevity but good improvement in quality of life.
As is often heard in medicine, treatment is not a one-size-fits-all approach, said Feigin, but can involve drugs, aerobic exercise, and occupational therapy. “I think some of the most exciting therapies are now entering clinical trials,” he said, adding that the future holds a lot of promise.
Five exciting areas he noted:
- New drug delivery methods, such as inhalers
- The repurpose of approved medications, such as nilotinib, used for leukemia, and exenatide, used for diabetes
- Stem cell therapies
- Gene therapies (several are now entering clinical trials, he said)
- Alpha-synuclein-lowering therapies
The second speaker of the evening, Margaret Rice, Ph.D., a professor in the departments of neurosurgery, and neuroscience and physiology at NYU Langone Health, spoke about exercise not only as a therapy to treat PD symptoms, but also potentially underlying causes of the disease.
Research has shown that as little as 40 minutes of exercise on a stationary bike, three times per week over eight weeks, can lead to increased mobility, Rice said. And it’s not just patient mobility that improved: Patients also showed in improvement on a pegboard test, leading to questions of whether exercise can affect cognition. Rice and her colleagues also are exploring the effect of exercise on dopamine regulation and release in mouse models of PD.
While PD patients wait for more detailed answers from the research, which can take time, existing exercise therapies are already being used to help with PD motor symptoms. Dance, a relatively new therapy, has become a popular choice. Dance for PD, for example, launched in 2001 by the Mark Morris Dance Group and the Brooklyn Parkinson Group, now offers dance classes designed for patients and their families and friends in more than 100 communities in 20 countries around the world.
To illustrate the power of dance, audience members at the event were treated to two moving performances: the first, a choreographed dance by Michael Vitaly Sazonov about the transition a family makes when a loved one has a diagnosis; the second, a performance by PD patient Manny Torrijos and Erin Landers, members of the Dnaga dance company.
In talking about his experience with Parkinson’s, Manny related that initially he felt relief about his diagnosis because it gave a name to the condition that had already caused him years of frustration. But that positive feeling was short-lived. To learn to live with PD, he said, he wrote his own manual, focusing in on two major points:
- Take care of yourself, body, spirit, and mind. Know your body and listen to your body.
- Be compassionate. “I’m focused less on what is the matter with me, and more on what matters to me,” he said.