Moving Forward

At Raw Kickboxing in Coral Springs, owner Mark Barker is intently focused on the clients he’s leading through a series of exercises, including shadowboxing and punching small speed bags.

Around this no-nonsense gym, they’re known as the Rock Steady group. Unlike most of the kickboxers whom Barker trains, this group is part of a unique national boxing program. The participants, ranging in age from 40-something to 80, have been diagnosed with Parkinson’s disease (PD), a degenerative neurological disease and movement disorder.

Although these gymgoers are a small bunch, they have many counterparts: Nearly 1 million people in the United States and more than 6 million worldwide are affected by the disease.

While there’s no cure for PD, doctors can help patients manage symptoms – including tremors; stiffness; and difficulty walking, speaking and balancing – caused when dopamine-producing cells die in the area of the brain that controls movement.  

One approach that seems to help combat the progression of the disease is exercise, which helps maintain balance and mobility, studies show. Barker, who became one of nearly 850 Rock Steady affiliates in 2017, says the program, a series of non-contact boxing exercises, helps participants with balance, coordination, strength, voice activation, gross motor movement, core strength and rhythm.

“People have told me the program has helped improve their posture and given them more energy,” he says. 

 Despite numerous studies, researchers still don’t know what causes PD, but there are many risk factors, including age (the average age at diagnosis is 60), being male, having a close relative with the disease and ongoing exposure to herbicides and pesticides, according to the Mayo Clinic.

On The Rise

Although instances of PD are increasing – a study by the Michael J. Fox Foundation for Parkinson’s Research notes that, by 2030, 1.2 million Americans will be living with the disease – new advances in research and treatment offer hope for the future.

And we have actor and author Michael J. Fox, who was diagnosed with PD at age 29, to thank. Created in 2000, his foundation has raised more than $1 billion for research that has led to major medical and surgical advances in treating and slowing the disease. 

Dr. Steven Frucht, the director of Parkinson’s and movement disorders at NYU Langone Health, concurs.

“I don’t think you can understate the impact it had on the field and also in very practical ways – in the dollars of research funding that was directed towards this disease,” he told People. “It had an enormous impact.”

In 2018, Fox, now 58, told People that he’s encouraged by advances in the field: “We’ll be able to predict it, and we’ll be able to stop the progress of the disease [in the next five years].” 

That would be welcoming news to Doug Clifton.

The 76-year-old was diagnosed with PD in 2013 after experiencing problems with his gait, sense of smell and sleep.

“I began having dreams that were so vivid, I would thrash about violently,” the Fort Lauderdale resident says. “One incident was so intense that I threw myself out of bed and suffered a subdural hematoma.”

Despite exhibiting worrisome symptoms, Clifton says his diagnosis wasn’t immediate. Because PD symptoms can be subtle and vary among people, it’s not uncommon for the disease to go undiagnosed for several years or to even be misdiagnosed.

Clifton and his wife, Peg, were living in Vermont at the time, and there was a six-to-eight-month wait to see a neurologist. He mentioned his frustration to a friend in Miami, who helped Clifton secure an appointment with Dr. Carlos Singer, a board certified neurologist and director of the Division of Parkinson’s Disease and Movement Disorders at the University of Miami Health System.

“After undergoing a standard battery of tests for PD to evaluate motor function and movement and assessing my symptoms, Dr. Singer diagnosed me almost immediately with PD,” Clifton says. 

He also learned that idiopathic REM sleep behavior disorder (IRBD), which causes people to thrash and act out in their sleep, was responsible for his violent sleep episodes. Researchers believe that IRBD might be an early precursor to PD and other neurological diseases. 

Clifton was prescribed levodopa, the most common medication used to control PD symptoms. He also goes to the gym three days a week for workouts that combine aerobics and weights.

“I’ve always enjoyed exercising, but, since my diagnosis, I’ve noticed exercise helps my balance and other PD symptoms,” he says. 

One challenge he has encountered is mastering the timing of his medications, he says: “I take my first pill at 7 a.m. on an empty stomach. I know it will typically last three and a half hours, but the pills don’t always take hold immediately.”

During his “off-times,” the periods when his medication has worn off and his next dose hasn’t started working, Clifton says he can experience slowness in his gait and “freezing,” a temporary inability to move. Researchers say that, as the disease progresses, the effects of the medication can wear off more quickly.

“I have to plan appointments and social functions around my pill schedule,” he admits. 

One such event was the Parkinson’s Foundation South Florida Chapter Moving Day in November in Boca Raton, a fundraising walk that offers resources for caregivers and information on new treatments. Clifton attended with Peg, and, while intrigued by some of the new treatments and medications highlighted, he says he’ll continue with his current regimen for the foreseeable future.

“Right now, I’m able to effectively manage my symptoms through exercise, stretching and medication. If that changes, I may consider other treatments.”

Looking To The Future

Over the past two decades, treatment for PD has changed dramatically, says Dr. Sameea Husain-Wilson, director of the Movement Disorders Neurology Program at the Marcus Neuroscience Institute at Boca Raton Regional Hospital. 

“We’ve seen an improvement in how PD medications are taken by patients,” she says. “Some patients take several oral medications a day to manage their symptoms, but new pump-delivered therapy and a dry powder inhaler with levodopa are changing the way PD is treated.”

Pump-delivered therapy, also called Duopa therapy, is often used in the later stages of PD, when pills aren’t as effective, according to the Parkinson’s Foundation. It involves surgery to insert a tube in the intestines. A pump then delivers Duopa, a gel formula that combines the medications levodopa and carbidopa, on a slow, continual basis.

Less invasive options are being developed as well, Dr. Husain-Wilson says.

“In 2018, the Federal Drug Administration approved a new levodopa powder that patients can inhale. A new sublingual [taken under the tongue] form of levodopa is also in the works.”

She says these new methods are expected to help patients better manage their off-times.

“Focused ultrasound using a guided MRI is another exciting technology,” Dr. Husain-Wilson adds. “This procedure uses beams of ultrasonic energy to target diseased tissues deep in the brain and lessen PD symptoms.”

It’s a less invasive alternative to deep brain stimulation (DBS), a surgical treatment first approved in 1997 that implants a device that sends signals via electrodes in the brain to reduce tremors, slowness, stiffness and walking problems.

Exercise therapy has also been shown to help reduce symptoms, Dr. Husain-Wilson says. One study found that PD patients who pedaled fast on a stationary bike three times a week for eight weeks showed a 35 percent improvement in their balance and gait. 

Researchers are also exploring ways to diagnose PD earlier as treatment is more effective in the early stages.

“The earlier someone with Parkinson’s is referred to a neurologist or movement disorder specialist and starts treatment, the better their quality of life,” Dr. Husain-Wilson says. “Many patients and doctors can mistakenly think the early signs of Parkinson’s are normal signs of aging, and they might not be referred to a specialist for two to three years.”

Neurologists are working to educate primary care doctors and the public about symptoms indicative of PD that might require further evaluation, she says. A diagnosis is typically only considered if a person has two or more motor symptoms associated with the disease, such as tremors, slowness of movement, rigidity, walking difficulties or voice changes.

“It’s an exciting time in the field of PD,” Dr. Husain-Wilson says. “Many studies are looking at treatments that might slow or even reverse the progression of Parkinson’s and provide hope for the future of Parkinson’s.” O

Here To Help

Local Resources For Parkinson’s Patients And Their Families

For educational resources, support groups and more, contact the American Parkinson Disease Association’s South Florida Chapter. Call 954-952-0429 or visit apdaparkinson.org. 

The University of South Florida’s Department of Neurology is recruiting PD patients for several clinical trials. Call 813-396-0757 or visit health.usf.edu/medicine/neurology/research.

The Parkinson’s Foundation South Florida Chapter offers programs for patients and their families in Miami-Dade and Broward counties. Call 305-537-9963 or visit parkinson.org.