Men with Parkinson's find sense of independence, community riding Confederation Trail

Men with Parkinson's find sense of independence, community riding Confederation Trail

Dan Steele loves to ride the Confederation Trail with his good friend Paul Bernard.

The two men started riding together last spring, on a couple of recumbent trikes made for people with mobility issues.

Steele and Bernard have Parkinson's disease, a progressive nervous system disorder that affects movement.

The disease causes loss of balance, mobility issues and tremors which make speech difficult.

Steele says living with Parkinson's can be physically and emotionally exhausting. But when he's on the trail enjoying the beauty of the day, one word sums up his feeling.

"I guess really the best way to say it would be 'energized,'" he said. "It really fills me up with energy when I see my friend is happy, just enjoying the thrill."

Dan Steele
Dan Steele

'A sense of independence'

Sarah Keaveny Vos/ CBC
Sarah Keaveny Vos/ CBC

Bernard has been enjoying the thrill of the ride all his life. His wife, Renee Blanchette, said he has always loved action and adventure.

A modern-day Renaissance man, Bernard drove motorcycles, loved to sail, played hockey, baseball, tennis, did carpentry, taught himself to weld and studied as a classical guitarist in London, England.

"Paul was a very mentally and physically active person, very talkative, very independent-minded, and he was very driven and goal-oriented," Blanchette said.

But Bernard's life changed forever in 2013, when he was diagnosed with Parkinson's.

"We first noticed that he was not talking or engaging as much with other people when we would have friends over," Blanchette said.

"He said he just wanted to give other people time to talk. We just didn't know what was going on until we got some medical advice and a diagnosis."

Blanchette said after years of losing mobility, balance and even his ability to speak, these rides are giving her husband back an important piece of himself.

"It's good for your brain and your spirit to be engaged in a real objective, a real-life experience and activity." she said.

"He's gained a sense of independence. He can no longer drive a car and he was always a vehicle person. So this puts the control in his hands and Dan lets him lead. What more can you ask?"

'Wonderful feeling'

Sarah Keaveny Vos/CBC
Sarah Keaveny Vos/CBC

Steele said living with Parkinson's can be very isolating. Many people experience feelings of shame, depression and anxiety.

His new friend, Harry Hariharan, spent many years doing no physical activity. Now, he is riding up to 18 kilometres on a single trip with Steele.

And while Parkinson's has reduced Hariharan's voice to a soft quiver, his message is strong.

"It's a very wonderful feeling," he said.

Steele said he is able to do these rides with Bernard and Hariharan because of a life-changing surgery he had in July 2020.

The procedure, called Deep Brain Stimulation (DBS), gave him back some of his mobility and strength. His voice cracks as he talks about it.

"First time I rode the trail after my surgery, I didn't think I'd be back," he said. "I was so grateful I had to share it."

Now, Steele doesn't want to waste a minute of his newfound strength and health.

Sarah Keaveny Vos/CBC
Sarah Keaveny Vos/CBC

"I know how much these men struggle because I've been there," he said. "I had much the same struggles before my DBS. And that gave me a gift of time, time to do something substantial for my community and my son. I am going to make the best of that time."

Steele has been working hard for the Parkinson's community this year as a volunteer for Pedaling for Parkinson's, a cycling event which aims to raise money and awareness about accessible riding.

He's the event coordinator for the Maritime ride, which will be held in Summerside on Sept. 25 and 26.

Steele hopes the event's message is clear: Just because you live with a limitation, it doesn't mean your journey has to end — there's always more trail to enjoy up ahead.

"If you can walk, you can ride," he said. "It just touches me. To be able to take a gift that I've been given and give it on to somebody else, it's incredible ... absolutely incredible."