Running with Parkinson's: Brown proud to complete the Chilly Half

Gary Brown refuses to let Parkinson’s disease get in the way of running.

After all, running is an activity he loves, and he’s already completed more than a dozen marathons.

On Sunday, he added another long-distance run to his list of accomplishments. At 57 – and more noteworthy, in his ninth year living with Parkinson’s disease – he completed Burlington’s Chilly Half Marathon. It was his first time participating in the long-time city event that raised more than $21K for Joseph Brant Hospital Foundation; he finished in two hours, 34 minutes.

He found the run challenging, and said he walked more than he ran over the last few kilometres. 

“At about 12 km out, I thought, ‘What the heck am I doing? I just want to get through this.'”

Nevertheless, the Streetsville resident says he’s proud of his accomplishment, and his only regret is not participating sooner.

“The run was a lot of fun; I enjoyed it,” he said. “I wish I had run it years before because that was the first time I ran that one. It would have been a great race before this stuff.”

The "stuff" he’s referring to is the toll Parkinson’s disease has had on his life.

Parkinson’s is a neurodegenerative disease of the brain that affects almost every aspect of living: movement, mood, speech, ability to smell, eating and drinking, and sleep. It can cause cognitive changes and there is no known cure; more than 100,000 Canadians have Parkinson’s disease, including celebrity Michael J. Fox.

Diagnosed in 2014 when he was 49, Brown recalled his family doctor asking him about the tremor in his left hand during nearly every physical examination he’d had for many years. He insisted it was nothing to be concerned about, especially since he felt great and was in great physical shape.

“Then in January 2014, something happened and all of the sudden it went straight up my arm,” he said. “It just seemed like all of a sudden with this tremor. I’m left handed and I was dropping everything, my balance was getting poor, I was having problems.”

Still, he ran two full marathons that year. But by April, when he went back for a routine visit, his doctor recognized his symptoms and sent him to a specialist in Toronto.

He completed two more marathons, in Ottawa and Chicago, before doctors confirmed he had Parkinson’s disease. He started medications to control the tremors, and within four years he was taking 14 different Parkinson’s medications. 

In 2019, he decided to undergo brain stimulation.

“February 14, 2019 was the worst day of my life,” said Brown, who’s on long-term disability from his employment at Canadian Tire’s distribution centre. “My wife says I’ll do anything to get out of Valentine’s Day!”

He was required to be awake for the procedure, which involved drilling holes into his skull. “They saw the look on my face and they started asking, 'What are you feeling?'" he recalls. "There was nothing I could do, I wanted to cry my head off.”

It turned out surgeons were two millimetres from the correct spot, so they made the adjustment, and the procedure has made his life a lot more enjoyable.

“It helped immensely,” he said.

Wires run down his skull and neck under the skin and into his chest, where a rechargeable impulse generator provides electric stimulation.

Today, he experiences tiredness and difficulties with many of his day to day activities.

“I go through so much fatigue and tiredness all the time. I try to stay so active, but there’s no real Band-Aid medication, and even brain surgery is another Band-Aid. There are good days and bad days.

“I exercise, and being out I walk and run in Streetsville here (a group of some 70 people who get together most mornings for a scheduled walk/run). “The group are just amazing people and everybody understands. They don’t treat me like I have it. They don’t see the difficulties through the day.

“I get so frustrated. My wife’s getting to the point where she won’t let me do the cooking. I drop everything.”

While the father of two adult children doesn’t have a lot of tremors, he experiences lack of control of his dominant left hand.

But he maintains physical activity has made a positive influence on his life and encourages others to keep active.

“Whether you have any kind of illness, or disease, or whatever, just keep moving.”

And for those who have Parkinson’s he recommends they get to know the many supports and services of the Passion for Parkinson's Foundation.

He sought out the non-profit group that was created in 2014 by a small group who shared a common goal to raise awareness of the disease and support for those with Parkinson's. Over the next several years, the committee continued to be a fundraising leader for Parkinson Canada.

Now Brown, whose grandmother and cousin had Parkinson’s disease, takes part in Wednesday afternoon dance classes, spin classes (which he started) on Thursdays and boxing on Fridays.

“This organization is so important to me, and it is just great,” he said. “After the classes, we go for coffee and we talk about how they are managing it and how important it is to keep active through this. You stay active with the community and people your age.”

There are many more activities available, including creative art, singing, group exercise, painting and pole walking.

Tamara Boaden, chair of the non-profit group that runs programming in Mississauga and Burlington, said Brown is an inspiration.

“He attends every week, taking public transport since he no longer drives,” she said. “I have witnessed it taking him two hours to get to one of our classes, but he shows up. He is such an inspiration to us all. He often tells me this is his job to stay fit.

“We were delighted and excited to be at the start and finish line watching him run the Chilly Half Marathon,” she continued. “His strength, determination and positive attitude is so admirable. It is an honour to have Gary participate in our classes and he is an inspiration to all others with Parkinson's disease.”

Visit https://passionforparkinsons.org/ to learn more about the group and its programs.