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what it feels like: parkinson’s disease didn't make me feel sorry for myself
almost two years after toronto musician gordon myers first noticed a tremor in his left hand, he was diagnosed with parkinson’s.
apr 1 2024
6 minute read
gordon myers
gordon myers was at the high point of his career, performing in the orchestra for hit musicals like the lion king and crazy for you in toronto, and high-energy shows like gypsy at the shaw festival in niagara-on-the-lake. as a talented musician on the trombone (who also plays other band instruments for teaching purposes), he also worked with other artists in recording studios and commercial gigs.
but then something unexpected happened that would compromise his ability to make a living and choke his creative spirit.
his slide hand for the instrument started to shake.
“i had a tremor in my slide hand. trombones are asked to play long sustained notes a lot,” he explains. “trying to stop the tremor with pressure caused a lot of anxiety and even more tremors. it eroded my confidence.”
the trombone is also challenging because you have to develop your face muscles, and breath and control, to hit those exact slide positions to produce the notes. then there’s the large and oblong shape that can make it difficult to hold upright.
almost two years after the toronto musician first noticed the tremor, he was diagnosed with parkinson’s on april 1, 2010 – he says april fool’s was an odd day to hear the news, although it was a relief to know what was happening. he was 52 years old at the time, and his family doctor had told him he was too young for parkinson’s. a push from his wife for a follow-up got him referred to a neurologist for tests.
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“i had a conscious feeling that i took solace in every year that something got better about my performance level or work level. but in 2008, i remember it vividly: it was like i took a step backwards. i was finding it harder to play well, more nerve-wracking, and work was disappearing,” says myers. he describes the period as a two-year buildup to the diagnosis that torched his career.
“but it was a relief to know that there’s a cause to all this crap.”
finding new ways to approach life after parkinson’s diagnosis
parkinson’s is a neurodegenerative disease that progresses at a different rate for each person. your body’s movement is typically controlled by dopamine, a chemical that carries signals between the nerves in the brain. but when cells that produce dopamine die, the symptoms of parkinson’s appear, says parkinson canada, the national charity for research, support and advocacy .
the disease is commonly characterized by motor symptoms like tremors, slowness of movement, rigidity and trouble with balance and posture. non-motor symptoms are highly prevalent, like mood, anxiety and clinical depression (which affects as many as half of patients).
more than 100,000 canadians live with parkinson’s. while the average age of onset is around 60 for symptoms to appear, young onset parkinson’s – before age 40 – happens in five to 10 per cent of those diagnosed, with as many as 20 per cent under the age of 50.
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for myers, the diagnosis was like a call to action. he had plenty of support from his family to deal with what he now understood as depression from his parkinson’s, along with the difficult tremor. “my very first reaction was to get in shape. i generally keep myself physically in pretty good shape, but i got really serious about it. i got in the best shape of my life.” he wasn’t about to let his life come to a stop.
he also credits a friend for convincing him to get critical illness insurance about 10 years earlier, and he was able to pay down debt and connect with a personal trainer in his neighbourhood for expert conditioning. physical activity has been shown to improve symptoms and have a protective effect on the brain, slowing cell degeneration.
with parkinson’s, the medication levodopa taken throughout the day has been the long-standing treatment to help with the debilitating motor symptoms. “i’m the type of person who doesn’t want to take anything i don’t absolutely have to take,” myers admits. but he started, as directed by his neurologist, to take three of the 300-milligram little yellow pills every day.
as with many medications, possible side effects impact the quality of life, such as loss of appetite, constipation or diarrhea, nervousness, headache, and difficulty falling asleep or staying asleep.
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“it would bother my stomach at first, but then your body adjusts. it wasn’t a dramatic effect. because that was really early times when my symptoms were relatively benign,” he says of the drug regimen.
on the upside, the medication allowed him to perform in a couple of last musical shows in toronto, including priscilla queen of the desert, based on the oscar-winning iconic australian film about three friends who take their drag show to the middle of the outback.
“that show went great, and i had a great time playing it. we were just like a little rock band playing disco music. i did one more show a couple years after that, but that was the end of my theatre.”
adjusting his tune to a new life with parkinson’s
how do you make a living with a progressive neurogenerative disease that starts to affect speech and balance, as in myers’ case?
you deal with it. myers got certified in a special breathing technique that promotes deeper breathing through your nose and less through the mouth. he planned to launch a business to teach the breathing technique, but it never quite got off the ground. he benefitted personally, though, because the method helped his mental and physical health, adding to his disease management toolbox. being proactive and doing as much as you can is important.
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“with tremors, i’ve got to tell myself to quell the anxiety and breathe small. and when i do that, usually the tremor stops,” he explains. “it is just generally better.”
another pivotal shift for myers was watching an interview with michael j. fox, the canadian actor and celebrated advocate for parkinson’s research, on cbc tv in 2013 . fox was diagnosed with parkinson’s in 1991 at age 29. he shared the news with the public in 1998 after taking time to understand and adjust to his new reality and then established the michael j. fox foundation for parkinson’s research in 2000.
“it was actually very helpful,” myers says of the candid interview. “he was just very positive. george [stroumboulopoulos] asked him at one point if he could come back in life again, ‘would you rather come back and not have parkinson’s?’” myers recalls the emotion rising in his voice. “his response was that he wouldn’t change anything.”
staying positive isn’t easy, but it can make the days more manageable. he says his speech is changing fast, with words starting to slur. and now he’s having balance issues, which can be frightening.
“denial plays into it pretty heavily,” he laughs. “i still have a level of denial, but what’s kind of turned me around was giving back,” he says.
he began facilitating a peer support group through parkinson canada and chairs the patient advisory board at the university health network’s movement disorders clinic in toronto . he wants others with parkinson’s to connect to the community in some way to benefit from the level of understanding and empathy.
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the patient advisory board helps to promote research and participation in research and provides a patient perspective on developing new programs and communications.
“it’s opened up a whole world that i never would’ve seen with meeting other patients, care partners and the neurologists. it’s been inspiring to be around such brilliant people.”
his day-to-day does focus on more medication for parkinson’s that he takes throughout the day, along with drugs for blood pressure, reflux and a much reduced but daily puff for asthma. he’s back to golfing in the summer and playing hockey twice a week with a group of musicians. he’s glad he got a dog, duke, a couple of years after his diagnosis, as a great companion.
basically, he practices what he wants others in similar shoes to do as best they can:
“exercise first. physical exercise and mental exercise,” he advises. “take advantage of whatever there is out there. i’m doing a physiotherapy program that i got referred to that i don’t have to pay for. if someone offers something, be open to trying it. just don’t feel sorry for yourself.”
he’s also back to playing trombone a bit and having more fun with it. “i’m taking a lot more drugs, but i’m allowing them to help. between that and learning how to relax and play, i’m having a little more success with a few more gigs and having more fun doing it.”
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for more information and support services for parkinson’s, visit parkinson canada.
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