Sharon Murray
The tattoo on Tom Muller’s arm says, “March 17, 2017.” Five hash marks follow, counting every year since the day he got his Parkinson’s disease diagnosis. He was 47 years old.
“A friend of mine says, ‘Stay up all night. Fast for 24 hours. Throw yourself down a flight of stairs. Stand up, close your eyes, and spin around five times as fast as you can, and then walk a straight line,’” said Muller of West Hanover Township. “That’s what Parkinson’s is like.”
Muller shared his story after a session of Rock Steady Boxing at the Jewish Community Center in Harrisburg. The program, offered at gyms nationwide and around the Harrisburg area, uses non-contact boxing to help Parkinson’s patients punch past their symptoms while they find fellowship and hope.
Parkinson’s disease is a mysterious neurodegenerative disorder that affects the production of dopamine, the substance that transmits messages among nerve cells. While the outside world equates Parkinson’s with tremors, the condition actually comprises a broad and bewildering menu of symptoms attacking mobility, cognition, speech, balance and sleep.
Boxing takes a hit on all the symptoms. Standing with a line of punching bags at the JCC, instructor John Wysocki recently instructed his class members to shout out the classic numbers assigned to boxing punches.
“Throw the right hand, the left hand and two right hooks, so that’s 2-1-4-4,” he said.
The punching begins. The muscles are at work, but so is the cognition needed to remember the sequence and the vocalization that helps maintain vocal cord strength.
“That was an exercise of my brain,” said Sharon Murray of West Hanover Township. “You don’t think it’s hard, but it is. That’s part of what you do. Make your brain work.”
For Parkinson’s patients, 2½ hours of weekly exercise slows decline in quality of life, according to the Parkinson’s Foundation. Exercise of all kinds helps everyone, said Parkinson’s neurologist and researcher Xuemei Huang of Penn State College of Medicine, Hershey. But programs that provide movement, positivity and a sense of community are especially effective in augmenting her patients’ prescription regimen.
“What’s unique for Rock Steady Boxing is that it’s devoted to Parkinson’s patients for their particular challenges,” she said.
In the Harrisburg area, Rock Steady Boxing is offered at the JCC, West Shore YMCA, West Shore Academy of Martial Arts and Central Penn Wellness.
Programs such as Rock Steady Boxing can provide the positivity and socialization that help patients overcome the loneliness of a Parkinson’s diagnosis, Huang said. Younger patients see people 20 years older who are doing well. Older patients see younger peers they can help.
“That community, trying to lift each other up, up, that’s what I’m thinking the Rock Steady Boxing provides, more than that physical part,” she said.
Counting on Me
Murray “felt lost” after her diagnosis in mid-2021. Her journey “started with an anxiety problem.” She researched her options, because “that’s how I heal and handle things,” and found what she likes in Rock Steady Boxing.
“It makes me feel a lot better about the whole thing because I’m not out there alone,” she said as she put on her gloves. “If I have questions, any one of these people will answer it for me and point me in the right direction.”
At the West Shore YMCA, participants dress up for holidays—green for St. Patrick’s Day, costumes for Halloween—and bring seasonal treats. Before a recent session there with instructor Christina Phillips, Alan Williamson recalled his “demoralizing” diagnosis and the counterpunch of motivation that Rock Steady Boxing delivers.
“I can give myself 1,001 excuses for not exercising, but, here, I have a class to look forward to,” he said. “Christina is counting on me to be here, and the other participants are counting on me to be here, and I’m counting on them to be here. It’s camaraderie.”
Research that pinpoints one exercise as better than another is scarce because the control group would have to be sitting on the couch, not a good thing for Parkinson’s patients. But one recent study has shown that higher intensity can make a difference, Huang said.
In fact, Rock Steady Boxing instructors don’t give their students much slack.
At the JCC, Programs Director Terri Travers started her class with a mind-bending, laugh-inducing series of step movements, telling participants to say and do the opposite of what she was saying and doing. In the non-boxing segment of the class, students worked battle ropes and did pushups on a balance trainer.
At the West Shore YMCA, Phillips distributes PVC pipes that her twice-weekly attendants hold while doing rigorous stretches and bends. I was terrified to watch, certain that someone would fall, but they attacked their workouts with vigor. In fact, fall prevention and management are essential elements of Rock Steady Boxing.
“We work on balance, flexibility, mobility, posture control, because in Parkinson’s, people tend to hunch over,” Phillips said. “Sit up nice and tall. Look in my eyes.”
During the “boxing to the beat” segment of Phillips’ ever-changing class, participants threw sequences of air-punches in time with carefully selected tunes, such as “Heartache Tonight” and its catchy drumbeat. When one elderly participant started to slump, Phillips bopped over and shadowboxed with him. He responded by lifting his head and giving her a smile that lit up the room.
YMCA participant Elaine Sweger finds herself mimicking the PVC-pipe stretches in her daily functioning.
“Did you ever try drying your back when you got out of the shower?” she said during a break. “That’s the movement. If I’m trying to get something in the cupboard, I stand on my tiptoes. It keeps you moving. It just keeps you moving.”
Upbeat, Positive
With its focus entirely on Parkinson’s, Rock Steady Boxing is staff-intensive, with only six or so participants per instructor or volunteer. Those volunteers help expand class rosters by serving as spotters, providing one-on-one guidance for walking backwards or maintaining balance.
YMCA volunteer Ron Jones has been boxing since age 12, winning tri-state championships and boxing with the U.S. Army traveling team. Parkinson’s patients “fight this thing every single day of their lives,” he said.
“If we give them three hours a week of help, then I think it’s giving back,” he said. “That’s what I want to do, is to help them. We’ve had people that have passed, and it tears my heart out. Every single person in that class has a very special place in my heart.”
JCC volunteer Mo Caplan called the participants “just great people, good people.”
“Very upbeat, very positive,” he said. “You take away as much as you give, just watching people dealing with some bad luck, making the best of it and controlling what they can control.”
Unlike many people interviewed for news stories, Parkinson’s patients love to tell their ages. Ann Gard is 92, and she loves yoga, water exercise and boxing. Sweger, who is 80, told me that she is donating her brain to Dr. Huang, her neurologist, for research.
Examining a known donor’s brain opens insights into Parkinson’s by comparing the brain’s pathology with the patient’s clinical progression charted in life, Huang said.
“For a doctor, it’s a very sad day when our patient has passed, but afterwards is for learning,” she said. “Nobody will die in vain in our program. They give a final gift to the clinician to learn lessons about what sort of brain pathology caused their problem.”
JCC class member Tom Muller intends to stick with his gym workouts to stay in shape and with Rock Steady Boxing to knock out Parkinson’s.
“I like the fact that everybody in here is working towards a common goal, and that is working your body to fight off the inevitable,” he said. “My neurologist said this is a disease you’re going to live with the rest of your life, so you might as well educate yourself about it. You do what it takes, right? It’s going to get me in the end. I know that, but I’m not going to go down without a fight.”
For more information about Rock Steady Boxing, visit www.rocksteadyboxing.org.
If you like what we do, please support our work. Become a Friend of TheBurg!
