By: Jeff Hamilton
People living with Parkinson’s learn to CounterPunch disease with former boxer and his mother in their corner
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Every Tuesday evening a small group of about a dozen people meet at the United Boxing Club, a small gym located on the second floor of an office building in the heart of Osborne Village.
It’s not your average boxing class. Members vary in age and physical ability, and there’s an even split between men and women. Unlike most who come through these doors, the goal isn’t to one day compete in the ring, though you’d never know it based on the intensity of the hour-long sessions.
In fact, for most, just getting there is half the battle. Once they do, it’s a chance to let it all out.
“It’s a good way to release stress,” says Miles Wilwand, 50, dripping with sweat after a tough workout. “Stress from work and home and all the other stuff.”
Though work and home can be taxing — Wilwand admits he can be a pain sometimes to his wife Tanya — it’s the “other stuff” in his life that has him in the gym boxing twice a week, attending a second session every Saturday morning.
Like all participants in the class, Wilwand has been diagnosed with Parkinson’s disease. Next month it will be five years since he was diagnosed.
“December 20th, 2011, five days before Christmas,” he says. “It’s not exactly the best gift.”
The neurodegenerative disease hasn’t stripped him of his sense of humour; he can joke about it now. But it hasn’t always been that way. Living with Parkinson’s has taken a lot of adjusting. At the time of his diagnosis, Wilwand says he was in the best shape of his adult life; he went to the gym, jogged and rode a bike.
“So when it did hit me, it hit me really hard because I wasn’t expecting it,” he says.
What used to come easy is often a struggle. Just getting out of bed can be a chore. He takes medication to help with the tremors, but it doesn’t always stop his muscles from twitching while he sleeps, which can then cause his entire body to go stiff.
To counter the pain, each morning Wilwand applies heat packs to his problem areas — one on his shoulders, another on his lower back. It’s become part of his routine, which he says also includes a healthy diet, yoga and seeing a massage therapist once a month.
Because Parkinson’s targets the body’s muscles, most of the common symptoms affect mobility. The body produces dopamine, a chemical that helps the transmission of signals between nerves in the brain. When the cells that normally produce dopamine die, Parkinson’s symptoms appear.
The disease’s inexorable progression varies in speed; it can go from mild symptoms to severe debilitation in as few as two or three years or it can take two decades or more. There is no known cure, but it’s believed that next to medication, regular aerobic exercise is the best way to control symptoms.
A fan of boxing in his youth, Wilwand always regretted not getting involved in the sport. So he jumped at the opportunity to take part in CounterPunch, a boxing program designed specifically for people living with Parkinson’s.
“If I wasn’t here I would be sitting at home still feeling sorry for myself,” he says. “When you leave the gym you go home feeling a heck of a lot better, a heck of a lot more hopeful for the future.”
For two hours a week Wilwand and the others are put through a series of mental and physical workouts, including hitting the speed bag, executing different punching combinations and stretching in a safe environment, surrounded by people who are going through the same daily challenges.
He says he looks up to the others in the class, many of whom he considers friends. When he’s boxing he feels most like his old self again.
“Here, you forget about everything. You just hit the bag and you release all that bad energy,” he says. “When you leave here… yeah, you may be real tired and you’re gasping for air and you’re sweaty and smelly, but it’s a really good feeling.”
Jab. Jab. Cross. Hook. Cross. Dip. One. Two.
Like a seasoned army drill sergeant, Brandt Butt barks out orders. As he walks from one end of the gym to the other, all eyes are fixated on his every move. Tall, handsome, charismatic, arms covered in tattoos; the 26-year-old instructor is the perfect mix of friendly and fierce.
He performs the combination aloud one more time.
Jab. Jab. Cross. Hook. Cross. Dip. One. Two.
Butt has been teaching the sweet science for a decade and didn’t change his approach with this class.
“That’s a big part of how I run my program,” he says. “What we do here is we teach a boxing class for people with Parkinson’s, but we treat them as if they are athletes. They are learning the techniques, they are learning why they do techniques, they’re asking questions and I think that’s an important part of it. We want them to feel empowered and feel themselves getting better at something they’ve never tried before.”
Butt founded the CounterPunch program earlier this year with his mother, Sheri Larsen-Celhar, who watched a documentary about a similar American program called Rock Steady Boxing. She was inspired by the positive effects it was delivering to Parkinson’s patients south of the border.
“Right at that moment I was like, ‘Brandt and I could do that,’” says Larsen-Celhar. “I thought that it would be something that we could do together.”
Secretly — call it mother’s intuition — Larsen-Celhar felt her son was spinning his wheels. He lost his father in a 2012 plane crash. Then he suffered a serious shoulder injury that derailed his budding career in the ring. Perhaps getting involved in a program like this would “help fill some of the holes in his heart.”
“I was absolutely in a rut,” says Butt. “Boxing defined me. When I lost that I lost a piece of myself. But when I learned that boxing could help individuals living with Parkinson’s disease, it kind of re-lit that flame, gave me a new passion for the sport and helped open my eyes. It became something I needed to do.”
A noble idea indeed, but if it was ever to get off the ground Butt and his mother knew it would be a challenge. Neither of them had much experience with Parkinson’s, but they felt together they had a good foundation, enough expertise to at least explore the possibility.
Butt understood the ins and outs of boxing. Considered at one point to be among Manitoba’s most promising young fighters, he travelled the world as a member of Canada’s national team. He had been teaching at United since he was a teenager, so he had access to a facility.
His mom, a nurse practitioner, figured her connections in the medical community would help them connect to people living with Parkinson’s.
After months of research into different programs, they reached the point where they ready to go. As they were deciding on a launch date, they received emails from two people living with Parkinson’s who had heard about what they were looking to do and were eager to get involved.
“We made it very clear to them that this was a project that we were going to learn from them,” said Larsen-Celhar. “We told them our plan and they were in right away.”
Francine Lee and her husband Brock were the first to sign up. They make the two-hour return drive from Carman twice a week.
Francine, 62, was diagnosed with Parkinson’s six years ago. Since then, the two of them have been dedicated to finding new ways to confront the disease. She has embraced living with Parkinson’s — something she believes is a healthy approach — and looks for ways to regain some of the active lifestyle she had before her diagnosis.
“I was looking for something that could give me back the kind of life that I had,” she says. “Boxing, for me, it’s just given me back things like my flexibility, my agility, balance. I needed to find something to deal with the symptoms and this is my solution, and there is nothing I’ve researched that does what boxing does.”
She admits she was initially apprehensive, despite being interested. Faced with a disease that has diminished her health considerably, there was anxiety about going into an environment “meant for the ultra-healthy.”
But she did it anyway. And experienced the feeling of hitting the bag for the first time.
“It releases the endorphins and there is such a sense of mental well-being,” she says. “I take that home and it can last.”
Beyond the mental and physical workout, Francine says just being part of a group that understands what she goes through each day has brought an element of comfort. Although participants don’t often talk about their battles with Parkinson’s, being in the class provides a form of support not always available in other programs.
“It makes you aware of the fragility of life,” says her husband. “She’s lived with the disease for five years without knowing about this program. We plan to keep doing this for as long as we can.”
Francine credits the positive environment and the passion Butt and the other volunteers bring to each workout. Their high energy and positivity has become contagious; it’s also a much-needed pick-me-up on days when she doesn’t feel like a two-hour drive.
“They are caring, when so often there are many people that are indifferent,” she says. “They have built a community around that.”
For months, the class consisted of just six people — Butt and his mother, Francine and Brock and Tadashi Orui, another student with Parkinson’s who brought along his wife Sheri Blake. Since it was new to everyone, the plan was they would learn from each other. Butt quickly realized there would be significant challenges.
“I remember the first class, Tadashi was our first person, and he was having a tough day,” Butt says. “My eyes kind of opened up to how severe the disease can affect some people. Then we had this phenomenal class, and by the end of the class he walking.
“I remember thinking from that day forward, no matter how big or small this was going to get I was going to offer the program as long as people wanted to come.”
Wanting to reach as many people as possible, Butt knew that if he was ever going to expand he needed to reach out to the Parkinson’s community. That’s when he decided to put together a presentation for a Parkinson’s support group.
What he hoped for was a chance to generate a little interest. The response was overwhelming.
Tim Hague was in that support group. Three years ago, Hague — who was diagnosed with Parkinson’s in 2011, won the inaugural season of The Amazing Race Canada with his son, Tim Jr. Using his TV celebrity name recognition, he became an advocate for people with Parkinson’s, travelling all over North America as a motivational speaker.
Hague was impressed by what Butt was trying to do — he had a similar idea years before — and wanted in.
“I literally chased him out of the room when he left, and we got to talking,” says Hague, who also takes part in the boxing classes. “I told him I thought we have some unique strengths that I think we should combine.”
With Hague on board, CounterPunch received instant credibility. Hague had come up with a charity called U-Turn Parkinson’s and wanted the program to be a part of it. In return for Butt’s expertise in the sport, he could bring in medical professionals and provide some organizational structure, along with some fundraising ability.
And perhaps most important, he could attract participants.
“That’s how it kind of got up and running,” Butt says. “Now we’re here with 10 to 14 people in class, every class.”
CounterPunch now has a medical advisory board and a board of directors
Butt isn’t sure where the program is headed — he’s never really known. But he wants to see it grow.
More gyms. More programs. More people getting help.
“Yeah, I want it big,” he says. “How big that is? We’ll see.”