“Who are we? Rock Steady Boxers. Why are we here? Fighting Parkinson’s!”
That’s the rally cry of a group of people who know what it’s like to live with Parkinson’s disease, each cheer getting louder as they raise their fists in the air.
They meet regularly for a program that focuses on boxing drills and other exercises designed to reduce the progression of their disease.
It is also very clear there is far more going on in the gym than exercise: what is quickly evident is the support members offer each other mentally, emotionally and physically as they fight a debilitating disease that has no cure.
The rally cry ends every single hour-long session of Rock Steady Boxing, three days a week, 52 weeks a year. The only class that is cancelled is Christmas Day, says Mario Toffolo, the program’s head coach of the classes held at The Club at White Oaks Resort and Spa.
The battle begins when members walk through the door. Each one is greeted warmly, welcomed as a much-loved family member — joining the group means becoming part of a community of people who help each other as much as they help themselves.
The program trainers are not just gym employees, they are passionate and committed to fighting with and for their members, boxers, and also some spouses who attend with them, fighting every bit as hard as their partners.
Niagara-on-the-Lake resident Heather Beckman has been helping her husband Henry fight Parkinson’s since he was diagnosed 10 years ago.
The couple had been members of a White Oaks exercise program with Toffolo even before that, when they learned about a program in Indianapolis to help those with Parkinson’s. It was founded by a young lawyer with early onset Parkinson’s, and has been featured on both 60 Minutes and CBC.
There are now 800 such affiliates offering programs around the world, with all trainers both trained and licensed through Rock Steady Boxing.
Heather heard the testimonials from many who found their lives changed by joining the Indianapolis program, and brought that information to Toffolo, who looked into it. Soon he and his wife were in Indianapolis themselves to learn more about it, and returned to ask White Oaks to offer it at their fitness centre, at a special price so that non-members wouldn’t have to pay for a membership. White Oaks agreed, and thus it began, the first and only one in Niagara.
What is really important about the program at White Oaks, Heather says, “is the commitment Mario and his wife Linda have made to this endeavour. Everyone loves them and so appreciates all they do for us. Unless they are out of town — and then they have other trainers take over — they are there, no matter the weather, no matter the holiday. They are truly caring and so committed and involved. We are very lucky.”
The program has grown to include 34 regulars from across the region, but Toffolo knows there are many more potential boxers in Niagara who could benefit. The only one nearby opened recently in Hamilton, started by a couple who learned about it by participating in Toffolo’s sessions.
“There are about 1,000 people in Niagara Region diagnosed with Parkinson’s,” Toffolo says. His goal is to reach many more of them and to see the program grow across Niagara.
The testimonials from those interviewed on the CBC documentary are no different than what you hear at White Oaks, says Heather.
Her husband Henry is now 90, and doesn’t miss a class. She attends to support him, and also does some boxing herself.
While a hand tremor is often the first sign of Parkinson’s disease, the symptoms can be very different for each individual, “unbelievably different,” explains Toffolo, and can go for years undiagnosed, which means they aren’t getting the help they could.
“And a lot of people are in denial. They don’t want to know, and they don’t want to talk about it.”
Once diagnosed, “many say they had seen the signs, but just thought it was due to aging.”
Parkinson’s is a neurodegenerative disease with no cure, caused by a lack of dopamine, explains Toffolo, and as it progresses, it can rob people of coordination, balance and strength.
Research has shown Rock Steady Boxing can slow down the progression of the disease, as Henry firmly believes it has for him.
Like the disease itself, everyone in the class will see individual results. It can reduce symptoms — for some, their tremors disappear. Boxers in Toffolo’s sessions speak of feeling stronger, and with improved balance are less likely to fall. And it’s typical to develop a confidence in themselves to do what they thought they couldn’t.
Rock Steady Boxing improves their quality of life, he says, and not only because of the boxing, but because of the support they feel from everyone around them.
“The exercise plan we have here with Rock Steady Boxing is a life-saver,” says Henry. “I truly believe that.”
“And if we hadn’t been living here in Niagara and working out at White Oaks, with our connection to Mario, Henry wouldn’t be here today. He’d be in Upper Canada Lodge or some other such location like it,” says Heather.
Henry still shakes a little, “but not as much as I would without this,” he says of the boxing program. “There is no cure, so what is the alternative? It’s not magic. You have to work at it.”
He won’t miss a class. “Parkinson’s doesn’t take a rest, so neither do we,” a refrain heard throughout the class.
During COVID, some members continued their workouts online, says Toffolo, helping to maintain their fitness levels, but “those who didn’t went down hill quickly.”
Many people in the class say they come regularly, three days a week, and won’t miss one. When they travel, they seek out a gym to continue to exercise, as Heather and Henry do.
“I’m committed to exercise,” Henry says. “I like to follow the routine.” Even at 90, he adds, “I find it invigorating, not exhausting.”
And, he adds, “I feel like I belong here. It’s like a second family.”
Toffolo, retired from GM, says he has always worked out to stay fit, running marathons and lifting weights. Now his workouts are with his boxers. “These guys keep me young,” he says.
Visiting the gym during a session means greeting familiar faces from NOTL, as they work through their exercise programs. The class is divided in half, one group doing flexibility training, the other in the boxing room.
Overseeing one group is Cathy Mills from NOTL, group exercise director at The Club at White Oaks — she is one of the trainers, and her husband Rick Mills is a volunteer, helping to put boxers through their paces.
“I do this because it takes such bravery, such courage to come here,” says Rick. “If I am able to be of any help, that’s what I want to do.”
Oresta Simpson, one of the more recent members, is doing some stretches, and as Toffolo watches, he notices she is able to bend her knees and lower herself considerably farther than when she started. She laughs that it’s because she has an audience — she’s chatting with The Local, a sister publication of ThoroldToday, as she stretches.
If you don’t exercise, she says “you regress.”
Since she started Rock Steady Boxing, “I feel much more confident,” she says.
Her symptoms began with “freezing,” a situation where she couldn’t move her legs. “It feels like being cemented to the ground.”
She heard about the program through a friend, she says, a psychologist.
“This program has been amazing. At one point I couldn’t go shopping. I couldn’t do anything. I felt awful. Then I was diagnosed with Parkinson’s and everything fell into place.”
As Toffolo watches her exercise, he says, “I can see the difference. I can see her becoming more independent.”
Cheryl Smith, 64, comes from Thorold to attend the program — she was there the day it started, Oct. 16, 2016.
She had been diagnosed about a year before that. “This has helped me big time,” she tells The Local.
“I see a difference when I don’t do it. If you go away you have to find a gym, otherwise you lose it.”
She too won’t miss a session, and Heather says the benefits for Smith are noticeable. “You would never know she has Parkinson’s. It seems like she hasn’t declined at all.”
Smith says she has, “a little bit,” but she has also been able to reduce her medication, and she attributes that to the boxing.
Peggy Thorne comes from St. Catharines. When she was diagnosed she was told she should keep active. “This has been phenomenal,” she says. “I feel it helps me focus. It’s amazing what you thought you couldn’t do, and you get here and find out you can. And you have a whole community of people to work with. They help to make you feel good emotionally and physically. I love these people!”
Noel Morris, at 62 one of the younger participants, is from NOTL. He was diagnosed recently, and he too has already seen a difference.
“You feel better when you learn and through the stretch routine. It also helps clear some of the brain fog that can comes with Parkinson’s — and that feels good.”
As he says that, the boxing group has just finished a group exercise led by Rick Mills, and with each movement they shout out the multiplication table — they are making sure they exercise their brain as well.
The price of the program is a monthly fee of $140, about $11 per session. There is a drop-in fee, but it is seldom used — Toffolo welcomes those who want to try it out the without charge.
