Barry and Sharon Gelling love the theatre.
The Saanich couple holds season tickets to the Belfry Theatre, where they sit in the back, in the section assigned for those with mobility issues.
For Barry it’s an overabundance of Parkinson’s disease tremors that he’s concerned would distract others enjoying the performance.
Parkinson’s disease is the second most common neurodegenerative disorder, after Alzheimer’s disease, and affects both motor and non-motor functions.
A general practice physician since 1966, Barry didn’t know losing his sense of smell was an early symptom of the disease. Working in his office near what is now Uptown, he lost his sense of smell five or six years before he noticed the first shake.
That came in the form of a short burst in his right hand, while he was assisting on a surgery in 2001. He attributed it to a lack of sleep.
A year later, it happened again.
He quit coffee and surgery.
“I’d removed myself from everything that was difficult (in medicine),” he says. “Then it was more and more. Then one of my partners said, ‘You look like you have Parkinson’s.’”
Others began to notice, and in a classic Parkinson’s manifestation, his writing got smaller and smaller. By spring of 2002, he saw himself slowing down, and went to a neurologist for an official diagnosis.
Barry filled a prescription the same day. The medication treated the effects of Parkinson’s for two and a half years.
“The disease is progressive; the medication resolves the problems for a period of time,” he said. “You find something that works and then (sometimes) it only works for a couple of days.”
In 2004 he turned 65 and retired from medicine completely.
“I told Sharon, ‘My 60s will be fine but the 70s won’t be fun,’” he says.
He remains active at 74, albeit at a slow pace, and in good spirits in large part thanks to HeadWay Victoria Epilepsy and Parkinson’s Centre. He participates in educational programs, exercise classes, and takes advantage of consultations offered through the Centre’s program co-ordinator Maureen Matthew.
“I get to do individual and family consults. As access to physicians is reduced over time the need for information and support through our organizations increases,” Matthew says. “We work on chronic disease self-management. The idea is to assist people with learning what they need to learn to get on with their lives, and to infuse hope where they may be in a place of despair. It’s a reminder of one’s own power.”
HeadWay holds exercise groups at multiple facilities in Greater Victoria. The instructors understand that the limitations and needs of Parkinson’s participants can greatly vary.
“Exercise is critical when you have a movement disorder,” Matthew says.
Barry attends programs twice a week at the Les Passmore Centre, where the social post-exercise routine with others living with Parkinson’s is just as important as the hour-long workouts.
“The benefits are great; after the hour we sit down for coffee and talk,” he says. The common thread among participants – Parkinson’s – periodically makes an appearance, but the conversation typically revolves around politics and current events.
“I’m a social person. I like to go out,” Barry says in a happy tone, though the emotion isn’t evident on his face; another characteristic of Parkinson’s disease is the slow, stiffening of facial muscles. Barry grew a beard in 2002, because he believes “it bothers other people.”
HeadWay promotes other social offerings as well, from the newcomers group to stress management and nutrition classes. Programs are held all over Greater Victoria.
“People can use it as a drop-in program and remind themselves of their own power, and feel supported by people who ‘get it’,” Matthew says.
The program serves roughly 500 people in the Capital Region through both in-person and online appearances. There are also programs designated for young people who have been diagnosed at an early age.
Having his wife’s unconditional support at home is a crucial part of Barry’s life, and a major component of the programming through HeadWay. Barry says it’s allowing him to enjoy retirement, though not in the way his younger self expected.
“It’s nobody’s fault,” he says. “It just is.”
Did you know?
• April is Parkinson’s Awareness Month. Barry Gelling can’t say enough good things about HeadWay, which provides clients, families and communities with the tools to help manage the physical, psychological and social effects of Parkinson’s and epilepsy.
• Visit vepc.bc.ca to learn more about how to help, or to find resources.