October 23, 2018
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Parkinson’s patients are fighting back against the disease, literally

BRUNSWICK, Maine — It’s a cruel irony that John Moulton, a 65-year-old massage therapist from Harpswell, received a diagnosis of Parkinson’s disease last fall, just as he was preparing for an active retirement. For a guy who built a hands-on career helping people cope with pain, stiffness and impaired mobility, the diagnosis is particularly galling.

“I’ve always been really active and this is so limiting,” he said, his speech already muted and slowed by the effects of the progressive neurological disease. His balance and agility have also been affected, a real problem when it comes to his passion for sailing.

“I used to have really good balance, but now I look like a drunk walking,” he said, shaking his head with a rueful smile. Moulton had been experiencing symptoms for a couple of years, but delayed seeing a physician until he was enrolled in Medicare, since the private insurance he purchased came with a $15,000 annual deductible.

But Moulton isn’t taking this diagnosis lying down. Instead, he and his wife, Sally, have ramped up their physical activity with daily walks, vigorous outside chores and other exercise. And twice a week, they suit up and show up at the Landing Y in Brunswick for Rock Steady Boxing, a punishing, 90-minute workout built around a routine of boxing moves.

“The biggest thing is, if you don’t use it, you’ll lose it,” Moulton said. He hopes his participation in Rock Steady will help delay the inevitable worsening of his symptoms. Already, he sees some improvement.

“I can brush my hair with my right hand now,” he said. “Before, I couldn’t even lift it over my head.”

Rock Steady Boxing was developed in Indiana in 2006 with a special focus on helping people fight back against the debilitating effects of Parkinson’s disease. The nonprofit organization now boasts more than 280 program sites in 44 states. The program in Brunswick, a partnership between Mid Coast Hospital and the Landing Y, is currently the only site in Maine, and has been in operation for about three months.

“We know we can’t cure Parkinson’s,” Rock Steady head coach and Mid Coast Hospital exercise physiologist Zachary Hartman said. “So our goal here is to improve quality of life and make daily tasks easier.”

“With Parkinson’s, taking a thought and connecting it to a movement is the challenge,” he continued. “It takes balance, timing and coordination. Boxing moves require you to connect your mind to the movements of your feet and hands and to be fully aware of your body.”

‘Forced exercise’ may help delay changes

Parkinson’s disease affects approximately one million Americans, with about 60,000 new diagnoses a year, according to the Parkinson’s Disease Foundation. It is characterized by the progressive loss of mobility, balance, speech and sensory functions. It is more common in men than in women and more likely to appear after the age of 50. The causes are poorly understood, but Parkinson’s is associated with a decrease in the production of dopamine, a chemical that affects the brain’s ability to control movement and coordination.

There is no cure for Parkinson’s. Medical interventions include prescription and over-the-counter medications, brain stimulation surgery and another surgical procedure that allows medications to be delivered directly into the small intestine for better absorption.

But much of what can be done for patients and their families is aimed at staving off the physical symptoms of the disease while maximizing mobility and coordination. While even gentle exercise is considered beneficial, a number of studies have found that “forced exercise” — high-intensity activity that pushes people beyond their comfort levels — may be more effective at delaying the progression of the disease while improving muscle strength, physical coordination and manual dexterity.

Plus, rigorous exercise is known to promote a sense of wellbeing and aid in stress management. Rock Steady’s roots in the boxing ring may add a feisty, psychological dimension as well, though the program adapts traditional sparring moves for a non-contact personal workout.

“I think there’s something about the aggression of boxing that appeals to people,” said Dr. Bill Stamey, a Brunswick neurologist who has referred several Parkinson’s patients to the program. “It’s fun to put those gloves on and punch that bag hard.” Stamey’s patients overwhelmingly report they have made physical gains in the program, including improved strength, mobility, balance and confidence.

Countering the losses of Parkinson’s

On a recent Tuesday afternoon, after a pep talk and a gentle warm-up session, John and Sally Moulton strapped on padded boxing gloves and worked through the intensive Rock Steady training circuit. They were in a group of about 20 others Parkinson’s patients and their supporters, divided in two for the two-part workout session. The circuit in the boxing gym included going some rounds with a row of heavy cylindrical punching bags, then battering small, round speed bags hanging at eye level and followed by rhythmically bashing the dense “ground and pound” training bag lying on the floor.

There was also the “hit mitt” station, where participants deliver cued punches to heavy hand pads held by a certified coach.

“Jab! Cross! Duck! Hook! Hook! Duck! Uppercut! Uppercut” barked coach Andy Anderson, as a feisty participant pounded out the moves with a little impressive footwork thrown in.

Each participant gave the activities everything they had for about a minute, with 30 seconds of recovery between stations. John Moulton, whose large frame is slow these days to respond to his brain’s intentions, was more subdued than some others in the class, but he gamely worked through each station, including a “falling practice” exercise aimed at minimizing injury in a tumble and a wall-squat challenge to build abdominal and lower-body strength.

After a half hour, the group in the boxing gym swapped places with a group in an adjacent workout room for another 30 minutes of sweaty exercise, including abdominal crunches, a tricky balancing activity, some eye-hand work and a station where participants used a baseball bat to energetically whack a giant truck tire, over and over. By the end, everyone was drenched with sweat and gasping for breath. Most were also smiling broadly.

The session wrapped up with a group cooldown and a raucous, hands-in-a-pile Rock Steady cheer.

Back in the lobby, John and Sally Moulton, married since 2008, said they’re committed to continuing with Rock Steady for the indefinite future. “I know a good exercise program is essential if I want to stay active,” John said, “so here I am.” He hopes the program will help him enjoy another summer of ocean sailing, another season of stacking firewood and tending to chores around the couple’s home.

Sally says she’s her husband’s “corner man” in the boxing program. “If he needs assistance, I’m there to help him,” she said, “but so far that hasn’t been the case.” For the time being, she’s enjoying the challenging workout herself, the energetic camaraderie of the gym and the opportunity to spend time with her husband.

They both said the program has helped them connect with a supportive group of people affected by Parkinson’s in the Brunswick area. “The social aspect is huge,” Sally said.

At the Rock Steady national headquarters in Indianapolis, Executive Director Joyce Johnson said a longitudinal study of the program’s efficacy is underway through the University of Indianapolis, although she did not know when the study will be completed or published.

But it stands to reason, she said, that if forced exercise is beneficial to people with Parkinson’s, boxing would be the best activity for many.

“Boxing is the most demanding of all the sports,” Johnson said. “You have to be fast and agile and strong and have good eye-hand coordination.” Plus, she said, “It’s fun and kind of edgy, and it’s a lot more fun to tell your grandchildren that you’re boxing than telling them you’re going to physical therapy.” The image of literally fighting back against the disease is also heartening to Parkinson’s patients, she added.

Coach Zach Hartman in Brunswick said each new participant goes through a comprehensive physical evaluation when starting the program and again in three months to determine where individual improvements can be measured and where additional focus may be helpful. A recent spate of media coverage has generated interest in bringing Rock Steady to other areas of Maine, he said, including Portland, Lewiston and Bangor.

“We have a great group of people who want to help and support each other,” Hartman said. “When they’re here, we don’t treat them like they’re sick. We treat them like they’re boxers and athletes.”

 


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