Parkinson’s disease — a progressive movement disorder — has no cure, but better treatments are giving more hope
If you had told Rick Mazursky 13 years ago that he would be working out most days, hitting stickers on a boxing bag while simultaneously spelling words aloud, or balancing on a stability ball while throwing punches, he wouldn’t have believed it.
But the investor, inventor and entrepreneur says that these elaborate routines have saved him from going into a deep depression after a dire diagnosis.
Initially, a tiny tremor in Mazursky’s index finger and thumb caused his internist to send him to a neurologist. After some tests, the neurologist delivered a diagnosis: Mazursky had Parkinson’s disease, a progressive neurodegenerative disorder.
“I didn’t take it well. I was so shocked by it all,” says the 75-year-old Northbrook resident.
Mazursky, former president of toymaker Vtech, recalls a psychologist telling him, “You have to live for the moment.” Living for the moment meant Mazursky became as committed to countering Parkinson’s disease as he was to being an inventor with 14 patents.
Mazursky now takes three medications a day and works out at Movement Revolution, where exercise specialists tailor workouts for people with neurological conditions including Parkinson’s disease.
While Mazursky is taking charge of his Parkinson’s disease, it’s not an easy path. The progression of Parkinson’s disease can be devastating for individuals and their loved ones, though hope and new treatments to lessen symptoms are in store.
Varying symptoms
Not everyone will experience all the symptoms, but Parkinson’s disease typically starts with mild signs such as tremors and changes in posture, walking and facial expression. In the advanced stages, stiffness in the legs may make it impossible to stand or walk, confining individuals to a wheelchair or bed. They may need around-the-clock nursing care, and they may experience delusions or dementia. Symptoms usually begin gradually and then become more severe over time, though progression and intensity is different for each individual.
Some 1 million people in the U.S. have Parkinson’s disease, and, because of the aging population, that number is expected to double in the next 20 to 30 years, she says.
Still, while there is no cure for Parkinson’s disease, many developments — exercise, medications, surgery and advanced technologies among them — are making life better for those affected.
“There is a tremendous amount of hope,” Simuni says. “We’re hoping that in the next five to 10 years there will be new-generation therapeutic options.”
Increasing knowledge
Parkinson’s disease develops when cells die off in the substantia nigra, an area of the brain that manages motor skills, balance and speech. These cells produce dopamine — a neurotransmitter that helps regulate movement.
The loss of dopamine leads to issues with movement. And because dopamine also regulates cognition, memory, learning, attention and sleep, some people with Parkinson’s disease also experience cognitive changes.
However, while scientists can see what’s happening in the brain, they still don’t understand why. “We don’t have an answer to the question of why people get it,” Simuni says. “It’s a complex interplay between genetics and environmental factors, which can include chemicals, toxins and head trauma, among others.”
Scientists are also learning more about how alpha-synuclein — a protein abundant in brain cells of people with Parkinson’s disease — clumps up to impair the release of dopamine in Parkinson’s patients, Simuni says.
There is mounting evidence that if you’re willing to exercise, you make significant progress.”
“There’s a tremendous amount of work being done to find therapies that not only treat the disease but also cure it,” says John L. Lehr, president and chief executive officer of the Parkinson’s Foundation.
Finding those therapies is complicated because “No two individuals have the same course of the disease,” Lehr says. “Some have a long, slow progression that could go on for 20 or 30 years, and some could have a short lifespan.”
Several initiatives are increasing knowledge of Parkinson’s disease. In the Parkinson’s Outcomes Project, researchers are studying 13,000 participants in five countries to evaluate the most effective treatments, the best candidates for each treatment and the benefits of exercise programs.
The discovery of common genetic mutations in two genes,LRRK2 and GBA, is spurring development of new therapies, though genetics cause only 10% to 15% of Parkinson’s cases. The Parkinson’s Foundation’s PD GENEration initiative offers free gene testing and genetic counseling to those with a confirmed Parkinson’s diagnosis at designated “centers of excellence,” including Northwestern Memorial Hospital. The foundation hopes to use genetic testing results to map the future of Parkinson’s treatments.
A range of therapies
Most people with Parkinson’s disease develop symptoms after age 60, though young-onset Parkinson’s disease affects those younger than 50. Because Parkinson’s disease progresses differently for each patient, there are a range of symptoms and effects of the disease.
UChicago Medicine neurologist Tao Xie, MD, PhD, says patients often come to him either in denial or in dread of the diagnosis.
As director of the Parkinson’s Disease and Movement Disorder Clinic and Deep Brain Stimulation Program at UChicago Medicine and director of the Information and Referral Center of the American Parkinson Disease Association, Xie says he reminds patients: “It’s not a fatal disease. It’s not a cancer. It’s a neurological disease. It’s a slowly progressive disease, and we have many treatment options that can get your symptoms better controlled.”
Several drugs for Parkinson’s disease help control the symptoms. Levodopa, the most commonly prescribed drug, increases dopamine levels in the brain. But after long-term use, patients can experience side effects such as involuntary, often-jerky movements called dyskinesia, as well as on-and-off periods where the drug will stop working.
Researchers are developing several new therapies to address symptoms of Parkinson’s disease. One new treatment involves injecting botulinim toxin — more commonly known as Botox — to treat dystonia, the tightening of muscles that can result in body parts getting flexed or twisted into an abnormal position. Botox weakens the muscles and returns them to a more normal state.
An important treatment is deep brain stimulation (DBS), which treats tremors and motor issues for patients whose symptoms cannot be adequately controlled with medications. Surgically implanted electrodes produce impulses that affect specific cells and chemicals in the brain.
St. Charles resident Glenn Peterson sought DBS after he experienced severe side effects from levodopa. Diagnosed with Parkinson’s disease in 2006 when he was 50 years old, Peterson communicated with Chicago Health via email because he speaks softly and in a monotone, an effect of Parkinson’s disease. His small, cramped handwriting — also typical of Parkinson’s disease — compounds his communication issues.
Peterson says he tried eight to 10 drugs to treat his ever-increasing symptoms. The only medication that worked for him was levodopa, he says. By 2013, he was taking 20 levodopa pills daily, but he suffered from the uncontrollable movements of dyskinesia. Peterson’s dyskinesia got so bad that he couldn’t sit in a chair, much less continue working as a carpenter.
“It was at that time that my movement disorders specialist suggested deep brain stimulation surgery,” he says.
Xie says that about 10% of patients with Parkinson’s disease get deep brain stimulation surgery; although, more people could be good candidates for the treatment. “DBS can better control motor fluctuation, dyskinesia and tremor, which otherwise could not be adequately controlled by medications in these patients,” he explains.
During the procedure, a neurosurgeon drills a small hole in the patient’s skull and implants a tiny device with electrodes that deliver electrical stimulation to brain areas that control movement in specific body parts. It’s “like a brain pacemaker” to better control abnormal movements, Xie says.
For Peterson, it was a life-changing surgery that all but eliminated his tremor and reduced his need for levodopa to just three pills a day — a decrease that got rid of the dyskinesia.
Now Peterson copes with the disease by embracing it. He sits on the board of the American Parkinson’s Disease Association. And on behalf of the Michael J. Fox Foundation, he has made multiple trips to Washington D.C. to advocate for Parkinson’s research funding and public policy.
Exercise for body and brain
While medications target motor symptoms, they don’t help with the cognitive decline associated with Parkinson’s disease, Simuni says. Mild cognitive impairment affects 20% to 50% of people with Parkinson’s disease, and up to 80% of people with Parkinson’s disease develop dementia long-term, according to a 2018 report in the journal NPJ Parkinson’s Disease.
Because of medication limitations, researchers are encouraged by studies showing the benefits of exercise programs that improve motor skills and cognition. The Parkinson’s Outcomes Project found that those who exercised at least 2.5 hours a week had a better quality of life and a slower decline than those who did not.
Daniel Corcos, PhD, professor of physical therapy and human movement sciences at Northwestern University Feinberg School of Medicine, authored a 2018 study in JAMA Neurology showing that high-intensity treadmill exercise, three times a week, delayed progression of motor signs in those with early-stage Parkinson’s disease.
One theory holds that exercise may contribute to neuroplasticity — helping the brain maintain old connections, possibly form new ones and restore lost ones.
“There is mounting evidence that if you’re willing to exercise, you make significant progress,” Corcos says.
In a 2015 study in Movement Disorders, Corcos and co-researchers looked at the cognitive impact of two structured exercise programs. They found that 24 months of exercise, twice a week, may improve attention and working memory in people who have mild to moderate Parkinson’s disease without dementia.
Some programs — such as Movement Revolution, with locations in Chicago and Deerfield and classes planned in the south and west suburbs — tailor programs for those with Parkinson’s disease.
Boxing exercises — with their emphasis on agility, endurance, strength and balance — can be a knockout option. The Rock Steady Boxing program, offered at Movement Revolution and at other locations worldwide, features boxing exercises specifically for those living with Parkinson’s disease.
“This type of exercise integrates balance, forceful upper body movements and cognitive multitasking,” says Movement Revolution owner Eric Johnson, a neuro exercise specialist in adaptive exercise for people with Parkinson’s disease and other neurological conditions. “Our goal is to help them continue or get back to doing the things they love — pick up the grandkids, travel the world, play golf — for as long as they can,” he says. “It empowers them and provides them with the sense of being strong, which builds confidence.”
Mazursky has used physical activity to avoid isolation and maintain motor function. “I believe exercise is a good potion,” he says. “We work on strength-building, endurance, flexibility, balance and posture. The exercise invigorates me.”
Mazursky’s tremors haven’t kept him from reading two newspapers a day, working on a secret invention and playing with his four grandchildren. “I feel confident in myself. A lot of people with Parkinson’s disease become reclusive. It keeps me in touch with other people,” he says.
At Shirley Ryan AbilityLab, adaptive sports and fitness programs provide tools to help patients with physical challenges so they can continue to exercise on their own after finishing physical or occupational therapy.
Specialists use computerized motion analysis, assistive technology programs for speech, and other technology that improves gait, manual dexterity and cognition to aid people with Parkinson’s disease with daily tasks and communication.
“In the past five-plus years, there’s been great interest in harnessing technology to help people with walking, balance and speech,” says Jennifer G. Goldman, MD, section chief of the Parkinson’s Disease and Movement Disorders Program at the Shirley Ryan AbilityLab and professor of physical medicine and rehabilitation and neurology at Northwestern University Feinberg School of Medicine.
Such advancements offer hope to people who have been trying to navigate life with Parkinson’s disease for years.
Coping through connecting
Lifestyle changes can help people manage the daily symptoms of Parkinson’s disease. In addition to exercise programs, Xie refers patients to speech therapy, occupational and physical therapy, and support groups.
East Peoria resident Roger Halleen’s wife Barbara, 59, has had Parkinson’s disease for 13 years. He says variations in her daily condition create challenges.
“I saw her at Rock Steady Boxing. She had better balance than me, and the next week she fell over in exercise class. It’s a very much up-and-down thing,” Roger says. “One of the biggest frustrations is not knowing what you’re going to get each day.”
Together they run the Central Illinois Parkinson’s Support Group, where members find comfort in the community, share information or just have fun. At some meetings, a social worker might talk to caregivers and patients in different rooms, or members go on a picnic, play bingo or have an ugly sweater contest.
“You need the ability to talk to other people about situations and maintain your social life,” says Roger, who advocates for Parkinson’s awareness and research as Illinois state director of the Parkinson’s Action Network. “People with Parkinson’s tend to become drawn in. They don’t want to go out.”
Roger runs four to six miles a day and has taken two advocacy trips, including a 120-mile hike across Sicily, which he used as a springboard for talking about the need for more research. Sometimes, though, he just needs to go down to his basement and be with his tropical fish, he says.
“You do your best not to give up on things that you used to do. My coping is still trying to be involved in things I like,” he says. “Everybody’s got to find their own little way.”
And for people with Parkinson’s disease, the exercise programs, medical treatments and developments on the horizon all help them find their own path to keep progression at bay.
Images on page: Rock Steady Boxing at Movement Revolution. Photos courtesy of Movement Revolution. Infographics by Andrea Fowler Design.Originally published in the Spring/Summer 2020 issue.
By Ronni Gordon
Ronni Gordon lives in an old house with an old dog. She specializes in health, dogs, college publications and cancer survivorship.
