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‘My muscles forget’: B.C. people talk about the impact of Parkinson’s

April is Parkinson’s Awareness Month in Canada, disease affects 17,500 people in B.C.

Documented as early as the 12th Century B.C. in Ancient Egypt, Parkinson’s disease (PD) was first extensively medically described in 1817 by English surgeon James Parkinson.

More than two centuries later, this progressive neurological disorder of the brain now affects more than 17,500 people in British Columbia and about 100,000 people across Canada.

As April marks Parkinson’s Awareness Month internationally, this time of the year presents a chance to educate the public about this incurable disease, which is projected to double globally by 2040.

Parkinson’s disease and its symptoms

Parkinson’s occurs when dopamine-producing cells in the brain deteriorate. Dopamine, an important neurotransmitter for nervous system functions, is responsible for regulating movements and emotions. The exact cause for the death of these cells remains unclear.

Individuals diagnosed with PD might exhibit common motor symptoms including tremors (shaking), slowness of movement, muscle stiffness, and impaired balance. Other less visible and non-motor symptoms frequently observed are fatigue, speaking difficulties, sleep disorders, and cognitive changes among other things. Some have also reported losing their sense of smell.

Despite the common symptoms associated with Parkinson’s disease, each individual’s experience varies greatly, with unique symptoms and requirements.

Researchers believe that Parkinson’s is likely caused by genetic and environmental factors. However, there’s still no clear understanding of what triggers the onset of the neurodegenerative disorder.

Commonly associated with older age, this progressive brain disease typically sees an increased risk of diagnosis as people grow older, with the average age being around 60. However, onset can occur as early as 40.

The risk of developing PD is twice as high in men than women but is known to progress faster and be more lethal to female patients.

Living with Parkinson’s

Ross Lane, a retired industrial electrician living in Courtenay, was diagnosed last year with the neurodegenerative condition at 76 years old.

Feeling increasingly tired, Lane first met with a sleep doctor who diagnosed him with sleep apnea. After visiting a clinic in Nanaimo, he was given a machine to help him sleep, but after a few months, his condition didn’t seem to improve.

“I (went back to my doctor) and by that time I had clear symptoms,” Lane said. “When I would reach for something, my hand would move very slowly. When I was writing, (everything) would get very tiny. After seeing this, my doctor said ‘That doesn’t sound like a sleep problem, it sounds like Parkinson’s.’”

Struggling with various motor and non-motor symptoms, Lane said that some are more apparent than others.

“When I walk, I stagger around like I’m drunk, but I haven’t had a drink in years,” Lane said.

When asked how it was to live with Parkinson’s disease, the man explained it was as if somehow, his “muscles forgot how to do stuff (he’s) been doing forever.”

Despite living independently, Lane finds that life’s most basic tasks often pose serious challenges daily.

“Normally, you wouldn’t really even think about dressing up because you would just whip your pants on or whatever,” said Lane. “But when you have Parkinson’s, you have much less mobility so I really struggle. That’s one of the reasons I went back to coveralls.”

Some things that many might consider trivial, like flipping pancakes or cleaning one’s home, take considerably more time and energy for Lane to accomplish.

Regardless of these physical limitations, the retiree mentioned that one of the most debilitating parts of Parkinson’s is the isolating nature of this disease. After surrendering his driver’s licence for fear of causing an accident, Lane now feels trapped within the confine of his apartment.

“It’s kind of lonely because I don’t have anybody to talk to about it,” said Lane. “Even though I’m in a support group, we only meet once a month. I can’t walk as far or as quickly as before.”

This loneliness is made worse by a lack of prognosis.

“The medical profession will not give me a prognosis and can’t tell me how quickly my disease is going to progress or (when I’m going) to be dead,” Lane said. “I feel a little abandoned.”

Comox Valley resident Bev White shares a similar story to Lane.

In 2022, at age 75, she was diagnosed with PD after her partner, Paul Atterton, asked their doctor to take a closer look at White’s gait.

In the following month, the woman was diagnosed with Parkinson’s disease and Lewy body dementia - which is commonly associated with Parkinson’s and Alzheimer’s.

“I think there were early signs if you knew that you were looking for. I think a lot of people don’t know (about PD’s symptoms,)” said White. “I was trying to learn how to play bridge because it’s supposed to be good for your brain, but for the life of me, I couldn’t (learn) anything beyond the very basics.”

After sharing his life for the last three decades with White, Atterton has seen the state of his partner decline drastically over the past 12 months.

“It’s been two years now and there’s been a dramatic change, especially on the cognitive side,” Atterton said. “(Her symptoms have just) exaggerated over time. The length of the awake day is shortened. Her shuffling is getting more (evident). There’s a lot of muscle stiffness, shortness of steps, loss of speech and overall confusion.”

Atterton describes every morning as a “business meeting,” during which both review the day’s schedule, ensuring they stay within a 24-hour time cycle to avoid further confusion on White’s part.

Considering herself lucky to be sharing life with her loved one, White recognized the chance she had to have a supportive partner.

“(Paul) is a rascal!” White said laughing. “But he’s been absolutely amazing and incredibly patient in the last couple of years as we’ve gone through all this.

“He makes me breakfast, lunch and dinner, and washes the dishes. He’s been very supportive and very patient. I can’t imagine where I would be without him.”

Yet, underneath this unwavering support, the couple is increasingly feeling the ever-growing weight of this disease. Having to give up his own hobbies and social life, Atterton is now fully dedicated to White.

“I don’t say that selfishly or begrudgingly, but we’re not getting the support we need and I’m basically Bev’s 24/7 health care system,” Atterton said. “She is not able to live by herself. If I wasn’t here, she’d be in the hospital today. Bev can’t manage simple things like putting out her medication, knowing what time of day it is or even what house she’s living in.”

The hardest thing for Atterton is to witness the disappearance of his lover, day by day, and watch Bev slowly become a shadow of her former self.

“(Everyday is just) like fixing a puzzle,” Atterton said. “I had Bev as a 1,000-piece puzzle and now she’s 400 pieces of it. It’s changing dramatically every day more so in the last two months than it was in the last year.”

Despite what the disease brings, White, Atterton, and Lane want to spread awareness about this progressive brain disorder.

“People seem to be afraid to even ask me what’s going on, but I’m not embarrassed by (my condition,)” Lane said. “It’s just the disease that I happen to have and I’m happy to talk about it. I don’t know if people are not curious or they’re scared to ask me questions, but I would say ask me about it if you’re interested!”

For more information about Parkinson’s disease and to learn more about services and resources available in B.C., visit parkinson.bc.ca.

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Olivier Laurin

About the Author: Olivier Laurin

I’m a bilingual multimedia journalist from Montréal who began my journalistic journey on Vancouver Island with The Comox Valley Record in 2023.
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