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parkinson disease: a diagnosis is often a 'test of time'
symptom progression and the effectiveness of medication are often the only ways doctors can determine if a patient has the neurodegenerative condition.
apr 13 2022
3 minute read
gina lupino was diagnosed with parkinson disease at 36. supplied
gina lupino played in a percussion band. one night she went to practice and noticed her snare drum didn’t sound quite right. she looked down and saw that her right wrist wasn’t moving as fluidly as her left, but she chalked it up to being out of practice. but over the next few weeks lupino started to notice more concerning symptoms. on her half an hour commute to work the toes on her right foot would curl, making it difficult to walk. she was also experiencing extreme fatigue — one saturday, she accidentally fell asleep and missed her friend’s wedding.
lupino was eventually referred to a neurologist and underwent several tests to rule out conditions like multiple sclerosis and stroke. more than a year after the snare drum incident she received a diagnosis at the age of 36: parkinson disease .
parkinson disease affects more than 100,000 canadians
more than 100,000 canadians live with parkinson disease, a neurodegenerative condition that happens when cells that produce dopamine — a chemical messenger in the brain — start to die. the average age of onset is 60, however up to 10 per cent of people will get diagnosed before the age of 50, known as early-onset. the disease is characterized by four main features — tremor, stiff limbs, slow movement, and impaired balance — but there are many other potentially subtle symptoms such as fatigue and constipation.
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“the biggest challenge with parkinson disease is we don’t have a diagnostic test,” says dr. lorraine kalia, a neurologist at toronto western hospital. “i often describe diagnosis as a test of time. we’re looking for symptoms, and also looking to see if the disease responds to medication and progresses as one would expect. it isn’t uncommon that years pass before a neurologist may say they’re certain it’s parkinson’s.”
kalia says there is a wide spectrum when it comes to symptoms and each person’s experience with the disease can be remarkably varied. in general, people diagnosed before the age of 40 and those with a tremor will have slower symptom progression. and while physical symptoms are certainly challenging, kalia says roughly 80 per cent of people will develop dementia 10 to 20 years after being diagnosed with parkinson’s.
there is no cure for the disease, but there are medications on the market to help mask symptoms. because the disease progresses over time, these need to be constantly monitored and adjusted.
“there can be complications from medications as the disease progresses including involuntary movements called dyskinesia,” says kalia. “there can also be fluctuations, where a person feels fine for a couple of hours after taking their medication but then their symptoms return which puts them on this roller-coaster ride of feeling well and then unwell throughout the day, which is obviously very disruptive.”
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while it took lupino six years to find a medication that her body could tolerate, bob kuhn has been able to live a relatively normal life since his parkinson’s diagnosis in 2006. kuhn, who is nearly 70, retired from his law practice just last year.
bob kuhn hopes awareness of parkinson disease can lead to a better outcome for those impacted. supplied
“what people with this disease need most is hope,” says kuhn, vice-chair of parkinson canada’s parkinson advisory council. “it’s an isolating disease and there needs to be more awareness around it, but i’m hopeful that with more research we’ll have better outcomes for people in the future.”
kalia echoes this sentiment, and says clinical trials are underway that will hopefully result in more therapies over the next decade, with the gold standard being the development of medications that would stop the disease in its tracks. aside from medication, she says exercise and a healthy diet can also help with managing day-to-day symptoms.
lupino who is now 44-years-old, practices yoga and tries to keep her stress to a minimum.
“i have days where i don’t even feel like i have parkinson’s, which usually happens when i’m eating well, sleeping well and my stress is minimal,” says lupino. “every decision i make in my life since being diagnosed with parkinson’s is through the lens of what’s in the best interest of my health.”
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for more information about parkinson’s disease and to connect with others visit parkinson canada.
this story was updated from april 13, 2022
vanessa hrvatin is a vancouver-based writer.
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