Roommates 31 years apart in age free one another from hiding Parkinson’s

TORONTO – Roommates Li Jiang and Elaine Jongsma are 31 years apart in age, but they have much in common. 

Their late November birthdays fall one day away from one another, and celebrations are set for this weekend. 

They love debriefing after first dates, lingering in each other’s doorways to chat about the day’s events, and biking. 

And, they both spent many years after being diagnosed with Parkinson’s disease trying to hide it.

But now, Jongsma said, “We can just be ourselves.” 

Jiang, 35, doesn’t bat an eye when Jongsma, 66, crawls around the house on her knees in the morning before her medication kicks in, and there’s no judgment when Jiang cries without any emotional trigger, one of the symptoms she experiences with her young-onset Parkinson’s.

The pair got to know each other at a cross-country bike ride for Parkinson’s awareness in August. While peddling more than 2,000 kilometres across British Columbia and Alberta, they learned they were about to live in the same city. 

Jiang was going back to school in the fall to study integrated rehabilitation and humanities at McMaster University.

Jongsma had a spare room at her house in Hamilton. 

“It was really a fluke,” Jongsma said.  

Since forming the bond, they’ve encouraged each other to be as they are, rather than live in fear of being belittled, pitied and judged. They say living alone or with roommates who are aware that they have this diagnosis doesn’t compare to their innate understanding of one another. 

Parkinson’s disease is a progressive movement disorder that can cause nerve cells in the brain to weaken, damage, and die, leading to tremor, stiffness, and challenges with balance, walking and talking. 

Dr. Sarah Lidstone, a movement disorder neurologist at University Health Network, said there are also non-motor symptoms, which some studies have shown women experience more often than men, such as anxiety, depression and fatigue.

“There also tends to be this idea that, ‘Oh, they’re just feeling anxious or their mood is low because they got this diagnosis, but actually neurochemically in the brain there can be an overlap in those symptoms for sure,” Lidstone said.

She said Parkinson’s has long been illustrated in medical school as a hunched over 70-year-old man, and only recently did that image evolve to include a woman going on a run.  

Dr. Veronica Bruno, a neurologist in Calgary with a subspecialty in movement disorders, said participants in focus groups she runs for her research on women with Parkinson’s across Canada often talk about hiding their symptoms. 

“That’s for us the main concern because nobody seems to be looking at it, from a sex and gender perspective,” she said.

Bruno said she’s observed women with Parkinson’s are more likely to experience pain and anxiety, which could be related to the fact that they are undertreated, and their diagnoses are often delayed by years, compared to men.   

Approximately 14,800 people were diagnosed with Parkinson’s in 2023 to 2024 – 60 per cent of which were male and 40 per cent female, according to Parkinson Canada. 

Research shows men are 1.5 times more likely to develop Parkinson’s than women.

However, Bruno said statistics have traditionally leaned more heavily towards men and there’s a high likelihood that merely reflects that they get diagnosed and treated more.

As a teenager, Li couldn’t swing her arms in gym class. She constantly had bloody knees from tripping over herself and her right hand became too rigid to write.

Years later, at 21, she was diagnosed with young-onset Parkinson’s after a gene test showed that she had two rare mutations. 

“I was in denial for over 10 years,” Jiang said. “You feel lonely because you don’t want other people to know.”

Jongsma was in her late fifties when she was diagnosed in 2018 after the fingers on her right hand could no longer click on her mouse at work. She swapped to her left hand for a year, and then she started to feel numbness and a tremor in her right arm. 

The shock of her diagnosis evolved into grief as she mourned the life she had planned for her retirement. She spent a very long time feeling alone.

“I never saw things moving forward. I just thought my life ended,” Jongsma said. 

They both discovered movement helped alleviate their symptoms –  swimming, hiking, tai chi, dance classes, and biking, where they found one another. 

“You realize that you’re not on the journey alone. We share it with each other.” 

That in itself is no small feat, Bruno said. “The power of someone just listening and understanding is infinite.” 

This report by The Canadian Press was first published Nov. 27, 2025. 

Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.