Rocky Balboa stopped at nothing to become a champion. Neither does this group of people with Parkinson’s following in Balboa’s footsteps. On a sunny Monday afternoon in April at the Edward A. Myerberg Center, a group met for their twice-weekly Rock Steady Boxing (RSB) class.
Parkinson’s is a progressive nervous system disorder that affects motor function. It often causes tremors, difficulty moving, rigidity, changes in speech and writing and other mobility-related issues. Parkinson’s also affects neurocognitive function. People with Parkinson’s tend to experience a lot of anxiety, depression and hesitancy to do new things or meet new people.
You wouldn’t know this by watching the participants of RSB at the Myerberg Center. As Center Director Niki Barr, previously the fitness and wellness director, lead the group in a warmup involving a series of stretches, participants chatted excitedly about an upcoming Parkinson’s conference.
Barr, who runs the RSB program at Myerberg first heard about it from a client at the center who had seen it on the news.
“So I did some research and I discovered that in Indianapolis, you can get certified as a Rock Steady Boxing coach. So I did that and it’s a weekend certification,” Barr said. “It was wonderful. Just seeing firsthand this community that they had built of all these people living with Parkinson’s that were finding hope. It was an emotional experience.”
After returning from Indianapolis, Barr spoke with the Maryland Association for Parkinson’s Support, Inc. (MAPS). Rona Rosenbaum, founder, president and chair of the board of MAPS started it in 2013 after learning that Maryland didn’t have a Parkinson’s support program. Rosenbaum, whose husband has been diagnosed with Parkinson’s for 24 years said, “I really couldn’t believe [that there was no Parkinson’s association in Maryland] because it seems to me there is a health organization for everything, except maybe hangnails.”
MAPS sponsors a number of programs for people with Parkinson’s and their caregivers, including several RSB classes. The first RSB that MAPS sponsored was at Brick Bodies in Timonium.
“We started with 10 people and two classes and we now have more than 50 people and seven classes,” Rosenbaum said, “So the need is there.”
The need is definitely much bigger than the Myerberg envisioned. “When we started sponsoring Rock Steady Boxing at Myerberg, they weren’t sure they could get four people, and within less than a month they already needed a second program,” said Judy Friedman, vice president and executive director at MAPS.
Although the exact number of people living with Parkinson’s is unknown, a person in the United States is diagnosed with Parkinson’s every nine minutes. In Maryland, Friedman and Rosenbaum estimate that MAPS supports between 400 and 500 people with Parkinson’s monthly.
One reason Parkinson’s is so hard to track, Friedman said, is “because Parkinson’s has so many different symptoms, I think it’s one of the reasons…that doctors aren’t picking it up so quickly.”
Rosenbaum cautions that there are a number of warning signs and stressed that if someone has four or five of the symptoms, they should consider getting evaluated for Parkinson’s. These symptoms include: stooping or hunching over; dizziness or fainting; a soft voice; constipation; trouble moving or walking; trouble sleeping; loss of smell; decreasing size of handwriting; tremor; increased anxiety; and a masked face (where your face seems serious or depressed despite not feeling that way.)
“People think of Parkinson’s as somebody who’s shaking with a tremor or walks funny or looks funny, but it’s a whole lot more than that,” Rosenbaum said.
While the symptoms of Parkinson’s are fairly well documented, the causes are less understood. Risk factors for Parkinson’s include age, sex, heredity and toxin exposure. As one ages, their risk of Parkinson’s increases. Most people develop Parkinson’s around age 60, though some people with early onset Parkinson’s can be diagnosed as early as 30 or 40 years old.
Men are far more likely to develop Parkinson’s than women.
For genetic causes, a number of genes cause Parkinson’s. Some genetic mutations may increase the likelihood of developing the disease. The number of people in someone’s family that has Parkinson’s is a significant factor in whether or not they will develop Parkinson’s. At the same time, specific toxins or environmental factors may increase one’s risk of developing the disease, but direct causation between a single toxin or factor is not clear.
Barr had set up stations and instructed everyone to choose a new partner, someone that they hadn’t worked with yet during that class, and a station at which to start. Stations included activities such as jumping jacks, pushups, using the punching bag or practicing sit-to-stands on two chairs in the corner.
“Ready? Set. Go!” Barr said, and cranked up the music while setting a timer for 90 seconds. The room was filled with a flurry of activity as everyone set about working as hard as they could. Barr paced the small exercise room encouraging participants to push themselves. At the sit-to-stand station she rallied the two men working there to try sit-to-jump where they stood up and immediately jumped in the air, making the exercise harder.
The timer sounded a shrill whistle to announce the end of the 90 seconds and everyone moved one station over. As Barr started the timer again, she went, this time to the punching bag station to cheer on people there. She joined two men at the punching bags and told them they would all go as hard as they could for 20 seconds. With a never-ending enthusiasm, she called out the seconds for them as the three of them punched the bags with gusto.
During another round, Barr got down on the floor with a group doing pushups and called for them to hold a plank for the last 20 seconds of the round. In a clear, loud voice, Barr counted down the seconds as both she and the two participants held planks. All three made it the last 20 seconds to the end of the round in the plank position.
Whatever the reason, this kind of activity seems to help people with Parkinson’s. Studies conducted in the 1980s and 1990s found that rigorous exercise emphasising balance, abdominal strength, rhythm and hand-eye coordination can help improve range of motion, flexibility, gait, posture and even daily living.
More and more research is coming out that’s showing the importance and benefits of intense exercise for people with Parkinson’s.
“There’s now a lot of research showing that exercise is as important if not more important than the medicine in maintaining quality of life in Parkinson’s patients. And there are many anecdotal stories of people who had a whole bunch of symptoms and then pedaled across the country and their symptoms really got so much better,” Rosenbaum said.
Studies done more recently have elaborated on these earlier studies and found that specific types of exercise are neuro-protective, which could mean that it may actually slow the progression of Parkinson’s.
The type of exercise found to be most neuroprotective is “forced” exercise, meaning extremely rigorous and intense exercise. Even newer studies are coming out with results that find that “forced” exercise intiates brain repair and subsequently, behavorial recovery. Some studies are even suggesting that regular “forced” exercise can slow or even reverse the progression of Parkinson’s.
In the brain, Parkinson’s causes nerve cells, or neurons, to gradually break down and die. A large portion of the symptoms of Parkinson’s are caused by the death of the neurons that produce dopamine. Abnormal brain activity, caused by falling levels of dopamine, lead to a number of the symptoms of Parkinson’s disease.
Because of the key role dopamine plays in symptoms of Parkinson’s, the two predominant medications for Parkinson’s patients are levodopa and carbidopa. Levodopa is a precursor to dopamine. It gets transformed into dopamine in the body while carbidopa helps with higher absorption of levodopa.
“The signature medication is levodopa/carbidopa and at some point in your career as a Parkie—a person with Parkinsons’s—you end up having to take that medication in order to maintain basic function in life,” said Len Schwartz, who has been diagnosed with Parkinson’s for eighteen years.
One of the biggest changes Parkinson’s enacts on one’s body, Schwartz explained, is that “it takes away your ability to be flexible.” Flexibility, which Schwartz said is necessary to deal with the constantly changing and evolving list of symptoms one might experience, is something that becomes harder with Parkinson’s because Parkinson’s tends to be accompanied by increased depression and anxiety.
For Cheryl King, a person with Parkinson’s who attends the class with her caregiver, Theresa Ciampaglia, being pushed and receiving encouragement is one of the most important parts of the class.
“She often feels like she can’t do things that she can,” said Ciampaglia, “She has a lot of pain and anxiety, but she usually can do what she thinks she can’t do, so there’s a lot of encouragement, sometimes a little verbal pushing.”
RSB uses a combination physical exercises and psychological and emotional skill-building to help people with Parkinson’s improve their quality of life.
“This exercise places them outside of their comfort zone, and I do push them,” Barr said.
Joel Hirschman, another class attendant with Parkinson’s, said that Niki is “great at motivating. I mean, she gets me doing a lot of things I wouldn’t even attempt to do. She gets you back and pushes you and you do it. And it’s…some of them don’t look good, but you’re doing them, it’s as simple as that.”
Further, Barr explained, the community aspect of the group helps encourage and support people.
“I think being in a community, a group environment, they feed off each other’s energy and you’ll find that they’ll want to push themselves on their own because they see other people being so successful,” Barr said.
Barr gives the example of a class member who, although hesitant to come, after coming for a number of weeks, decided she was ready to try to pulling herself off the floor.
“So this particular person was having difficulty at first just [standing up from a chair.] She was consistent. She was coming every week two days a week. She finally said to me, ‘I want to try getting down on the floor, without using [a chair for support].’ And I said, ‘Okay, let’s do it.’ And she gets down, and she gets right back up and it was great,” Barr said. “I think it’s those kinds of moments, where you see them realize that they could do so much more than they thought they could, that’s a great feeling.
RSB is helping people with Parkinson’s achieve a higher quality of living and it’s also affecting people outside the Parkinson’s community.
“Not only are the people within the class making great strides, but it’s affecting other people who don’t have Parkinson’s. They want to be a part of what’s happening,” Barr said. “We’re not just impacting our members but we’re impacting anybody who steps foot in that room.