Young-onset Parkinson's disease hits hard

The progressive neurological disorder affects every aspect of daily life for years
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When James Smerdon first noticed a little twitch in one of his fingers and a certain slowness whenever he tried to use that hand several years ago, he figured those strange symptoms were the result of a week-long motorcycle trip—maybe he’d sustained some nerve damage after so much clutch use. His doctor wasn’t nearly as nonchalant, referring the Vancouver retail consultant to a neurologist.

It took more than two years of tests, but in 2007 Smerdon got a diagnosis that floored him: at 33, he found out he had young-onset Parkinson’s disease.

“When they finally tell you, it just drops on you like a ton of bricks,” Smerdon says in an interview near his downtown office. “My wife and I are still dealing with it.

“It was on my seventh day of starting a new job,” adds Smerdon, who still works at Colliers International Consulting.

According to Parkinson Society British Columbia, young onset of the disease (YOPD) happens between the ages of 21 and 40. It’s far more common than many people realize, with 35 percent of all cases of Parkinson’s occurring in this age group.

The progressive neurological disorder—discovered by British doctor James Parkinson in 1817—results from the loss of dopamine in the brain’s substantia nigra. Dopamine acts as a chemical messenger, allowing nerve impulses to travel from one cell to another. But as levels decrease, movements become slower and more rigid, reflexes become impaired, and tremors can develop.

The symptoms of Parkinson’s appear when more than half of the brain’s dopamine cells are lost. The progression of the disease varies from person to person, but common signs include resting tremor (repetitive shaking in the arms and legs at rest), stiffness in muscles and joints, slowness of movements (bradykinesia), and balance problems.

Other symptoms include hypomimia (limited facial expression), hypophonia (soft voice), insomnia, constipation, depression, anxiety, forgetfulness, and confusion.

Smerdon says the disease affects every single aspect of his daily life. Having to take several pills a day and keep his medication levels balanced are constant reminders of his illness.

Then there are the glances from strangers, which Smerdon has learned to ignore. Still, he’s heard plenty of stories from others who’ve encountered ignorant, unpleasant reactions.

“When you have wobbly, erratic movements, people can think you’re drunk,” he says. “You’re slurring your speech; you might not be standing straight; you’re kind of slouching; your eyes might be drooping a bit.

“There’s no single reaction I get, but people do say things like: ‘Oh, that’s terrible; you’re going to have to deal with that for a long time.’ It’s progressive, so it’s not like at 65 I’ll just have this little tremor. I don’t know if 65 is in the cards.”

He stops and looks out the window.

“Generally, there’s not a lot of awareness,” he later adds. “I haven’t done anything that I know of to cause it. I have an identical twin brother who doesn’t have it. There’s no cure.

“But my wife and I are the kind of people who are very positive.…Friends have rallied around; family is a great support, and work has been great.”

Those with YOPD usually experience a much slower progression of the disease than those who are diagnosed after 50, and they’re often able to keep working and maintain an active lifestyle for a long time, according to the PSBC.

Neurologist Jon Stoessl, director of UBC’s Pacific Parkinson’s Research Centre and the National Parkinson Foundation Centre of Excellence, explains that genetics are playing an increasingly important role in research into the condition.

“Genetic studies may ultimately lead to better models of Parkinson’s, and this has been a problem in the field because the use of animal models is a controversial issue,” Stoessl says in a phone interview. “This is extremely important for developing novel therapies and for understanding what happens in the disease.”

The PPRC is also investigating the use of positron emission tomography imaging and functional magnetic resonance imaging to study the history and progression of Parkinson’s as well as complications of the disease and therapies, among other areas.

The main form of treatment is medication. Deep-brain stimulation is another approach, but it’s used only in a few patients.

“In those people who are carefully selected, it can be enormously helpful,” Stoessl says. “Generally, for people who do not respond to medication, they will not respond to surgery either. It’s not a magic panacea.

“Treatments work well for symptom control but can have side effects,” he adds. “What we really need is treatment that will slow progression of the disease or stop it. That’s why studies on genetic models may be very informative.”

An area of particular interest in treating Parkinson’s is exercise.

“Regular exercise may have an impact on disease progression, and it’s not only physical exercise but mental exercise, social interaction; these things are all beneficial,” Stoessl says. “The mechanisms are still not at all well understood…but it’s worth investing in in terms of research to learn why it helps.”

The sixth annual Parkinson Society British Columbia’s fundraising gala, An Affair to Remember: La Dolce Vita, takes place next Thursday (April 26) at the Fairmont Hotel Vancouver at 6 p.m., featuring a performance by Vancouver-born, Vienna-based opera singer Siphiwe McKenzie. More information is at the Parkinson BC website.

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