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COVER STORY: Pushing past Parkinson's
When Beverly Marlin was a young man he could talk just about anybody into buying a house, and with his charisma and smile he usually did.
“Bev” spent 42 years selling real estate around Tsawwassen and metropolitan Vancouver, making connections as easily as he made friends.
Trips to Europe with his wife Ursula, golf with his friends in Richmond, and sailing were all a part of the 67-year-old’s former lifestyle.
“I used to be wild and reckless,” he says, with a mischievous grin and a twinkle in his eye.
Ursula remembers the day that all changed about six years ago. She visited her husband during an open house showing and a couple was asking Bev some questions.
But although he had heard them speak, no words came in reply. The more time passed the more Ursula could see his anxiety stretch across his face like a dark cloud. He simply couldn’t respond.
It’s not uncommon for people like Bev to be at a loss for words. He’s been diagnosed with Parkinson’s disease, an incurable neurological disorder that is degenerative and defined as being “idiopathic”–there is no known cause. Common symptoms include shaking, rigidity, slowness of movement and speech, and difficulty walking.
The disease is named after English doctor James Parkinson, who published the first detailed description of “shaking palsy” nearly two centuries ago.
“Looking back, you can tell when things changed,” says Ursula, who can remember the earliest symptoms dating back to 1997.
It was then that she saw a change in Bev’s personality, noticing he wasn’t getting the same fulfillment from the things he usually enjoyed.
Like many people with Parkinson’s, he also began to get emotional easily. He would cry during moments that wouldn’t call for it, such as the middle of an uneventful baseball game.
Bev began to withdraw from society, from his friends, from the life he knew.
Going outside can be a frightening social experiment. Although Bev takes the prescription drug Sinemet to calm his tremors and make it easier to speak, a side effect is dizziness.
“People ask me if Bev had a stroke or has he been drinking,” says Ursula. “When he goes for a walk some people ask if he needs help home because they think he’s sick or drunk.”
Now he carries a card with him at all times which explains his condition. And once somebody reads it they recognize the name Parkinson’s right away because of its association with actor Michael J. Fox.
Fox is practically the poster child for Parkinson’s, having been diagnosed in 1991 at the age of just 30. One of the most iconic actors of the 1980s, known for campy comedies and action flicks, his public announcement in 1999 seemed to be the crushing end to his career.
But during the past 14 years Fox has brought attention and awareness to people suffering with Parkinson’s. And far from ending his career, Fox has continued acting, recently debuting a new TV show on NBC which features him dealing with Parkinson’s in humourous ways.
In the show’s online trailer one scene depicts him dialing 911 by accident because his “medication hasn’t kicked in yet.”
Another scene shows him riding in the back of a shaky ambulance and deadpanning the joke, “for me, this is perfectly still.”
There are also several jokes and references to the emotional manipulation sometimes used to evoke sympathy for diseases like Parkinson’s.
Poking fun at your serious condition seems to be a membership requirement to the club. Peter Scholfield, 72, calls his Parkinson’s support group “the movers and the shakers of Tsawwassen.”
“We try not to take ourselves too seriously,” says Peter in a faint Scottish accent.
He and his wife, Eileen, are exercise partners with Bev and Ursula in a program that’s aimed specifically for people living with Parkinson’s.
They, and roughly 15 other people diagnosed with Parkinson’s and their caregivers go every Friday morning to the South Delta Rec Centre to socialize, exercise, and vocalize.
“There’s a lot of laughing going on,” says Eileen, adding it’s a chance for Parkinson’s sufferers to just let loose.
Indeed, the shouting from some of the more exuberant members can seem more cathartic than clinical.
“If you were there and you didn’t know what it was about you’d think we were crazy,” admits Ursula, who was instrumental in getting the program off the ground.
Because her husband’s voice is weak from Parkinson’s, the singing and shouting exercises help strengthen Bev’s vocal chords. Peter benefits in the same way.
“It’s a real frustration sometimes because I know what I want to say and I can hear it in my head but I can’t say it,” he says.
Peter compares his condition to a two-way radio where he has to wait for the person to finish speaking before he can start.
Instructor Ann Lacey works with participants on their mobility as well, using a variety of exercise equipment, even folding chairs. Because people with Parkinson’s tend to slouch, the exercises are important in maintaining a good posture.
When Peter was diagnosed in 2006 at the age of 65 it was just a little tremor in one finger. Now, both hands shake perceptibly, requiring Sinemet to calm the tremors.
“It’s not a permanent thing at first,” says Peter. “It sort of comes and goes so you can ignore it and deny.”
But he says there are as many different manifestations of Parkinson’s as there are people who have it. And he considers himself one of the least affected members of the group. He can still drive a car, run his own errands, and lead a relatively normal life.
“And I’ve got my caregiver here,” says Peter, sending a tender smile in the direction of Eileen.
Nearly 100,000 Canadians live with Parkinson’s, including 11,000 in B.C. As the baby boomer generation grows older, those numbers are expected to double over the next decade.
Although there is no cure in sight, the Parkinson Society of Canada will spend $1.76 million over the next two years on continued search for causes and improving treatments and medication.
The Michael J. Fox Foundation contends that the best hope for the disease may be stem cell research. Parkinson’s occurs when dopamine-producing cells in the mid-brain die, and the foundation believes stem cells could replace those dying cells.
However, progress on stem cell research remains slow due to political and religious considerations south of the border. And at any rate, Ursula says she doesn’t expect a cure to happen in Bev’s lifetime.
Instead, they’re focusing on what they can do right now. Spending time with each other, and with their good friends, “the movers and shakers of Tsawwassen.”