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91ƵMy muscles forget91Ƶ: B.C. people talk about the impact of Parkinson91Ƶs

April is Parkinson91Ƶs Awareness Month in Canada, disease affects 17,500 people in B.C.

Documented as early as the 12th Century B.C. in Ancient Egypt, Parkinson91Ƶs 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 Parkinson91Ƶs 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.

Parkinson91Ƶs disease and its symptoms

Parkinson91Ƶs 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 Parkinson91Ƶs disease, each individual91Ƶs experience varies greatly, with unique symptoms and requirements.

Researchers believe that Parkinson91Ƶs is likely caused by genetic and environmental factors. However, there91Ƶs 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 Parkinson91Ƶs

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 didn91Ƶt seem to improve.

91ƵI (went back to my doctor) and by that time I had clear symptoms,91Ƶ Lane said. 91ƵWhen 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 91ƵThat doesn91Ƶt sound like a sleep problem, it sounds like Parkinson91Ƶs.91Ƶ91Ƶ

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

91ƵWhen I walk, I stagger around like I91Ƶm drunk, but I haven91Ƶt had a drink in years,91Ƶ Lane said.

When asked how it was to live with Parkinson91Ƶs disease, the man explained it was as if somehow, his 91Ƶmuscles forgot how to do stuff (he91Ƶs) been doing forever.91Ƶ

Despite living independently, Lane finds that life91Ƶs most basic tasks often pose serious challenges daily.

91ƵNormally, you wouldn91Ƶt really even think about dressing up because you would just whip your pants on or whatever,91Ƶ said Lane. 91ƵBut when you have Parkinson91Ƶs, you have much less mobility so I really struggle. That91Ƶs one of the reasons I went back to coveralls.91Ƶ

Some things that many might consider trivial, like flipping pancakes or cleaning one91Ƶs 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 Parkinson91Ƶs is the isolating nature of this disease. After surrendering his driver91Ƶs licence for fear of causing an accident, Lane now feels trapped within the confine of his apartment.

91ƵIt91Ƶs kind of lonely because I don91Ƶt have anybody to talk to about it,91Ƶ said Lane. 91ƵEven though I91Ƶm in a support group, we only meet once a month. I can91Ƶt walk as far or as quickly as before.91Ƶ

This loneliness is made worse by a lack of prognosis.

91ƵThe medical profession will not give me a prognosis and can91Ƶt tell me how quickly my disease is going to progress or (when I91Ƶm going) to be dead,91Ƶ Lane said. 91ƵI feel a little abandoned.91Ƶ

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 White91Ƶs gait.

In the following month, the woman was diagnosed with Parkinson91Ƶs disease and Lewy body dementia - which is commonly associated with Parkinson91Ƶs and Alzheimer91Ƶs.

91ƵI think there were early signs if you knew that you were looking for. I think a lot of people don91Ƶt know (about PD91Ƶs symptoms,)91Ƶ said White. 91ƵI was trying to learn how to play bridge because it91Ƶs supposed to be good for your brain, but for the life of me, I couldn91Ƶt (learn) anything beyond the very basics.91Ƶ

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.

91ƵIt91Ƶs been two years now and there91Ƶs been a dramatic change, especially on the cognitive side,91Ƶ Atterton said. 91Ƶ(Her symptoms have just) exaggerated over time. The length of the awake day is shortened. Her shuffling is getting more (evident). There91Ƶs a lot of muscle stiffness, shortness of steps, loss of speech and overall confusion.91Ƶ

Atterton describes every morning as a 91Ƶbusiness meeting,91Ƶ during which both review the day91Ƶs schedule, ensuring they stay within a 24-hour time cycle to avoid further confusion on White91Ƶs part.

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

91Ƶ(Paul) is a rascal!91Ƶ White said laughing. 91ƵBut he91Ƶs been absolutely amazing and incredibly patient in the last couple of years as we91Ƶve gone through all this.

91ƵHe makes me breakfast, lunch and dinner, and washes the dishes. He91Ƶs been very supportive and very patient. I can91Ƶt imagine where I would be without him.91Ƶ

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.

91ƵI don91Ƶt say that selfishly or begrudgingly, but we91Ƶre not getting the support we need and I91Ƶm basically Bev91Ƶs 24/7 health care system,91Ƶ Atterton said. 91ƵShe is not able to live by herself. If I wasn91Ƶt here, she91Ƶd be in the hospital today. Bev can91Ƶt manage simple things like putting out her medication, knowing what time of day it is or even what house she91Ƶs living in.91Ƶ

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.

91Ƶ(Everyday is just) like fixing a puzzle,91Ƶ Atterton said. 91ƵI had Bev as a 1,000-piece puzzle and now she91Ƶs 400 pieces of it. It91Ƶs changing dramatically every day more so in the last two months than it was in the last year.91Ƶ

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

91ƵPeople seem to be afraid to even ask me what91Ƶs going on, but I91Ƶm not embarrassed by (my condition,)91Ƶ Lane said. 91ƵIt91Ƶs just the disease that I happen to have and I91Ƶm happy to talk about it. I don91Ƶt know if people are not curious or they91Ƶre scared to ask me questions, but I would say ask me about it if you91Ƶre interested!91Ƶ

For more information about Parkinson91Ƶs disease and to learn more about services and resources available in B.C., visit .

NEWSLETTER:



Olivier Laurin

About the Author: Olivier Laurin

I91Ƶm a bilingual multimedia journalist from Montréal who began my journalistic journey on Vancouver Island in 2023.
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