GUELPH – Parkinson’s disease is more than just tremors, which is why the theme for Parkinson’s awareness month is “More than you can see.”
It can cause loss of balance, rigidity, soft speech, writing problems, sleep disturbances, depression, anxiety, psychosis, memory problems and difficulty with communication.
But rather than focus on the challenges of living with Parkinson’s disease, officials focused on the positive things going on in Guelph and Wellington County at a flag raising event outside Guelph City Hall on April 10.
Robin Arnott, community resource coordinator with Parkinson’s Society of Southwest Ontario (PSSO) spoke of the support groups open to residents of Guelph and Wellington County.
Two are offered in Guelph: one is for people living with Parkinson’s and the other for caregivers, family and friends. There is also a support group offered in Fergus.
Raising the flag for Parkinson’s Awareness Week increases awareness of the disease and the organization’s fundraising initiatives, Arnott said.
“There is no cure … We want to improve their quality of life.”
April 11 is World Parkinson’s Day in honour of Dr. James Parkinson, who first identified the disease in 1817.
This year’s theme includes a documentary series profiling people living with Parkinson’s and their caregivers, which can be found at psso.ca/morethanyousee.
Guelph Mayor Cam Guthrie praised the support groups that help people learn to live with the disease, noting they work “at the local level often not seen,” he said.
Guelph MPP Mike Schreiner said more funding is needed for support, research and managing the disease.
Guelph MP Lloyd Longfield, who is retiring after the April 28 election, said his wife Barb has Parkinson’s and he joined the care partner support group in 2021.
“Barb just learned she doesn’t have Parkinson’s, she has Parkinson’s Plus,” which is a more aggressive form of the disease, Longfield said.
He noted the PSSO is now helping family health teams understand more about Parkinson’s and new ways to help medical practitioners help their patients to navigate care.
Volunteer Teresa Daly was bubbling with positivity. Not only are there two support groups in Guelph, there’s a Park ‘n Dance session and boxing – activities that help people with Parkinson’s build strength and balance, she said.
And the emergency department at Guelph General Hospital is now allowing patients with Parkinson’s to take their medication according to their prescribed schedule rather than having to wait for a doctor’s approval, which can throw their systems out of whack.
“What do we tell you about taking your medication?” she asked the crowd of some 30 people. “On time, every time,” they replied, well familiar with the advice.
So for Guelph General to acknowledge that Parkinson’s patients need to stick to their medication regime “is a big change in the ER,” she said, adding the organization is making the same pitch at Groves and Louise Marshall hospitals in the county, hoping it can become common practice.
Barbara Salsberg Matthews hopped up to the mic like a ball of energy.
“I was first diagnosed five years ago,” she said. “I was shocked, it felt like I was punched in the gut.” She was depressed because suddenly Parkinson’s was her life.
“But I realized I am not my disease,” she added, realizing that while Parkinson’s will always be part of her life, it’s not her entire life.
She has prepared therapeutic mime videos for people with Parkinson’s that will be available online for free at the end of this month.
And she had the crowd contorting their faces in facial muscle warm-up exercises that are beneficial for people with Parkinson’s.
“Now let’s fly a flag.”
The PSSO will host Living Well with Parkinson’s conferences throughout April in various locations, featuring expert speakers discussing mental health, treatment advancements, and strategies for living well with the disease.
For more information visit psso.ca.
