Achi news desk-
Documented as early as the 12th Century BC in Ancient Egypt, Parkinson’s disease (PD) was first extensively described medically in 1817 by the English surgeon James Parkinson.
More than two centuries later, this progressive neurological brain disorder now affects more than 17,500 people in British Columbia and about 100,000 people across Canada.
As April marks international Parkinson’s Awareness Month, this time of year is an opportunity to educate the public about this incurable disease, which is predicted to double globally by 2040.
Parkinson’s disease and its symptoms
Parkinson’s occurs when dopamine-producing cells in the brain degenerate. Dopamine, an important neurotransmitter for nervous system functions, is responsible for regulating movement and emotions. The exact cause of death of these cells remains unclear.
Individuals diagnosed with PD may exhibit common motor symptoms including tremors (shaking), slowness of movement, muscle stiffness, and lack of balance. Other less visible and non-motor symptoms that are often seen are fatigue, speech difficulties, sleep disorders, and cognitive changes among other things. Some have also reported that they have lost 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 to be caused by both genetic and environmental factors. However, there is still no clear understanding of what triggers the onset of the neurodegenerative disorder.
Commonly associated with aging, this progressive brain disease typically sees an increased risk of diagnosis as people age, with the average age around 60. However, onset can occur as early as 40.
The risk of developing PD is twice as high in men than women but it is known to develop faster and be more fatal in female patients.
Living with Parkinson’s
Ross Lane, a retired industrial electrician who lives in Courtenay, was diagnosed last year with the neurodegenerative condition at the age of 76.
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 did not seem to improve.
“I went (back to my doctor) and by then I had clear symptoms,” Lane said. “When I would reach for something, my hand would move very slowly. When I was writing, (everything) would become very small. 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 some are more noticeable than others.
“When I walk, I wander around like I’m drunk, but I haven’t had a drink in years,” Lane said.
When asked what it was like to live with Parkinson’s disease, the man explained that it was as if his “muscles had forgotten how to do things (he) had been doing forever.”
Despite living independently, Lane finds that life’s most basic tasks often pose serious challenges on a daily basis.
“Normally, you wouldn’t even think about dressing up because you’d whip your pants on or whatever,” Lane said. “But when you have Parkinson’s, you have much less mobility so I find it very difficult. That’s one of the reasons I went back to coveralls.”
Some things that many might consider trivial, like flipping pancakes or cleaning your home, take much 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. Having surrendered his driver’s license for fear of causing an accident, Lane now feels trapped within the confines of his apartment.
“It’s kind of lonely because I don’t have anyone to talk to about it,” Lane said. “Even though I’m in a support group, we only meet once a month. I can’t walk as far or as fast as before.”
This loneliness is compounded by a lack of prognosis.
“The medical profession won’t give me a prognosis and can’t tell me how quickly my disease will progress or (when I’m going to) be dead,” Lane said. “I feel a little left out.”
Comox Valley resident Bev White shares a similar story to Lane.
In 2022, aged 75, she was diagnosed with PD after her partner, Paul Atterton, asked her 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 are early signs if you knew you were looking for them. I think a lot of people don’t know (about the symptoms of PD),” White said. “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 basics.”
Having shared his life for the past three decades with White, Atterton has seen his partner’s condition deteriorate significantly 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. “(His new symptoms) exaggerated over time. The length of the waking day is shortened. His shuffling gets bigger (obvious). There is a lot of muscle stiffness, lack of steps, loss of speech and general confusion.”
Atterton describes each morning as a “business meeting,” during which the two review the day’s schedule, making sure they stay within a 24-hour time frame to avoid further confusion on White’s part.
Considering herself lucky to be sharing life with her beloved, White recognized the opportunity she had to have a supportive partner.
“(Paul) is a rascal!” Gwyn said laughing. “But he’s been absolutely amazing and incredibly patient over the last few years as we’ve gone through all of this.
“He makes me breakfast, lunch and dinner, and washes the dishes. He has been very supportive and very patient. I can’t imagine where I’d be without him.”
And yet, under this unwavering support, the couple increasingly feels the growing weight of this disease. Having had to give up his own hobbies and social life, Atterton is now completely devoted to White.
“I’m not saying 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 can’t live alone. If I wasn’t here, she would be in hospital today. Bev can’t cope with simple things like putting out her medicine, knowing what time of day it is or even what house she lives in.”
The hardest thing for Atterton is seeing his love disappear, day by day, and watching Bev slowly become a shadow of her former self.
“(Every day is just) like solving a puzzle,” Atterton said. “I had Bev like a 1,000 piece puzzle and now she’s 400 pieces of it. It has changed dramatically every day more so in the last two months than it has in the last year.”
Despite what the disease brings, White, Atterton, and Lane want to spread awareness about this progressive brain disorder.
“People seem afraid to even ask me what’s going on, but I’m not embarrassed (by my condition),” Lane said. “I just happen to have the disease and I’m happy to talk about it. I don’t know if people aren’t curious or if they’re afraid to ask me questions, but I’d 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 BC, visit parkinson.bc.ca.
NEWSLETTER: Sign up to receive local news updates to your email
Ad blocking test (Why?)
Source link
Related
