An Edmonton couple is urging the provincial government to expand funding for a Parkinson’s disease treatment already available in Calgary — saying the lack of access across Alberta is prolonging unnecessary suffering for patients and families.
Garry Henderson, 66, was diagnosed with Parkinson’s in 2016 but his condition has worsened over the last two years.
Recently he’s had episodes of dystonia — painful, involuntary muscle contractions causing twisting, cramping, or spasms — several times a day.
Experts estimate that about 30 per cent of people living with Parkinson’s disease experience dystonia as either a primary symptom or a complication of treatment.
For Henderson, it impacts not only his ability to move, but also his ability to breathe.
“Imagine everything going on in your body at once and you’re gasping for air,” his wife Cynthia said.
“The more it happens, the more it builds the pain and creates it in another area,” Garry added.
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He uses meditation, breathing exercises, yoga, and physical tricks, like changing sensations in his feet, to help calm his body during dystonia episodes.
They happen when his medication starts to wear off and Garry said he’ll take an emergency dose to make the muscle contractions go away, but it takes time to kick in.
“I’ve gone two hours with pain and that’s a long time,” he said.
“It feels like forever.”
A new device called Vyalev has come on the market and it’s meant to lessen those peaks of pain in patients with advanced Parkinson’s disease.
Vyalev provides a continuous levodopa-based infusion (foslevodopa/foscarbidopa) delivered through a portable pump.
The device delivers medication throughout the day through a cannula (tube) under the skin.
It’s not a cure — but some patients have reported a 50 to 70 per cent decrease in episodes of dystonia.
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“For someone like Garry, even a 50 per cent improvement would be life-changing,” Cynthia said.
Vyalev was approved in Alberta in 2024, but the Hendersons haven’t been able to access it.
Clinics in both Calgary and Edmonton submitted proposals to launch the program in 2024 — but only Calgary’s got up and running, treating patients later that summer.
Edmonton’s location, inside of the Kaye Edmonton Clinic, has faced delays.
Global News reached out to the Ministry of Primary and Preventative Health for comment on the funding, but the request was redirected to Alberta Health Services.
“Implementing this treatment requires appropriate clinical capacity and preparation, which can take time to ensure Vyalev is delivered safely and in accordance with evidence-based practice,” AHS said in a statement.
A spokesperson said the team at the Kaye Edmonton Clinic is working on a plan to offer the treatment, but no timeline was provided on when.
“As with many new and advanced treatments, rollout occurs based on clinical readiness and capacity at a given point in time,” AHS said.
“In Alberta, it is common for specialized therapies to be introduced in either Edmonton or Calgary and then expand to the other centre, with the goal of providing equitable access for patients across the province. The medication was first introduced in Calgary, where the required clinical infrastructure was already established,” the statement said.
That’s isn’t good enough for Cynthia Henderson, as she witnesses her husband’s pain get worse.
“I can’t explain to anybody how it feels — first off, to watch your husband in this condition but second off, to know there’s something there that would benefit him,” Cynthia said.
“We don’t deserve to be left out in the cold and not have the treatment that is available in other areas.”
The Hendersons are not alone, according to the Parkinson Association of Alberta.
An estimated five to 10 per cent of Parkinson’s patients could benefit from the therapy and its not for everyone.
The treatment is intended only for patients with advanced Parkinson’s who no longer respond adequately to oral medications and must meet strict eligibility criteria before being approved.
“This medication isn’t new — it’s a different way of delivering an existing drug,” said Lana Tordoff, CEO of the Parkinson Association of Alberta.
“It’s for a small percentage of patients, but they’re the ones suffering the most.”
Tordoff said the annual cost to staff and operate both Alberta movement disorder programs would be in the range of a few hundred thousand dollars, primarily for specialized nursing support.
Tordoff said access to the drug could also save the health-care system money in the long run.
“If our symptoms are managed, then we don’t go to the hospital as much. We don’t need as many doctor’s appointments. When we do have to go to hospital, our stays aren’t as long.”
“Our goal is always to keep people living independently as long as they can,” she added.
The Hendersons are now calling on the provincial government to ensure equitable access to the treatment across Alberta — not just for them, but others who aren’t able to access the device.
“We feel defeated,” Cynthia said.
“We’re Albertans. We deserve the same care whether we live in Calgary, Edmonton, or anywhere else in this province.”
Despite the challenges, Garry remains active when he can.
A lifelong athlete and golfer, he still plays when symptoms allow, often alongside his son. He said access to the device could determine whether he’s able to stay active with his grandchildren as they grow.
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