She hid her young onset Parkinson’s diagnosis for years. Now she’s an ‘unshakeable’ advocate

When Dr. Soania Mathur was 28 years old and pregnant with her first child, she developed a trembling feeling in her right pinky finger. She thought at first it was related to the pregnancy. But after further testing, she was diagnosed with Parkinson’s disease.

“From a medical standpoint, I accepted it, but I really didn’t truly emotionally accept it,” Mathur, who is based in Ajax, Ont., told White Coat, Black Art’s Dr. Brian Goldman.

For nearly a decade, she hid her symptoms from all but her closest inner circle.

“It was, you know, sitting on my hand to prevent a tremor from showing, standing up when I knew my leg would tremor and that sort of thing. So it was … quite the charade.”

Eventually, Mathur’s symptoms progressed to the point she had to retire from her family medicine practice.

Since then, she’s dedicated her career to teaching and empowering patients with young onset Parkinson’s like her — and is joining them to spread awareness about how a disease often associated with older people can affect younger adults’ lives differently.

Now, she is on multiple hospital and foundation advisory boards, is co-founder of the advocacy group PD Avengers and co-chairs the Michael J. Fox Foundation’s Patient Council for Parkinson’s Research. She also writes about her own journey on her blog, with the moniker of the “Unshakeable MD.”

“The community of Parkinson’s patients, young and old, are so inspiring and so impressive to deal with that if I can make any small difference in their lives, then I have done my work,” she said.

The World Health Organization defines Parkinson’s disease as a neurodegenerative condition that causes problems with movement, mental health, sleep, pain and other health issues.

When symptoms of the disease begin before the age of 40, it’s known as young onset Parkinson’s disease (YOPD).

According to the Parkinson Canada charity and advocacy group, about five to 10 per cent of Parkinson’s diagnoses are young onset. About 20 per cent of all diagnoses happen under the age of 50, although the average age is around 60.

Angelica Asis, Parkinson Canada’s vice-president of research, said the number of Parkinson’s cases has doubled in the last 25 years. One 2018 study projects that number to surpass 12 million worldwide by 2040, mainly because of aging populations.

More than 100,000 Canadians live with Parkinson’s and 30 more are diagnosed every day, according to Parkinson Canada. But it’s uncertain whether young onset Parkinson’s diagnoses are growing compared to other age groups.

“Some data shows that young onset is on the rise, while other sources such as data from the Canadian Chronic Disease Surveillance System (CCDSS) show that rates are more stable year over year,” said Asis.

While every person’s experience with Parkinson’s is different, Mathur said young people’s symptoms usually progress at a slower rate, and include less dementia, than older patients.

But they may have more involuntary movements, some of which is caused by the principal medication levodopa, which then have to be managed with supplementary medications.

“On the more challenging days, there can be more tremors on my right side of the body,” said Sharon Chakkalackal, who was diagnosed two years ago, when she was 38 years old.

“Stiffness and rigidity. Sensitivity to light and noise. Difficulty with multitasking and balancing. And on the best of days and moments, I don’t experience maybe any of those symptoms. So it’s a bit of a mysterious diagnosis.”

Young people wait longer for Parkinson’s diagnosis

Chakkalackal, who lives in Toronto, said it took nearly two years from when symptoms began showing to get her diagnosis.

Part of it, she said, was because of the pandemic, many of her consultations were online, making it hard to assess her physical symptoms. 

But she also suspects that many doctors simply didn’t suspect Parkinson’s in her case, as a young South Asian woman. She admits it wasn’t the first thing she would have suspected of herself, either.

“I thought this was something that people over the age of 70 tend to get,” she said — echoing the opinion of Mathur and others that it’s also often associated with older, white men in particular.

She isn’t the only one to deal with a longer wait. According to one 2012 study, younger people get diagnosed 15 months later than those whose first symptoms begin at age 60 and older.

“In general, we do see knowledge of young onset Parkinson’s improving, but the health-care access piece is something we’re actively working with provincial and federal governments to enhance,” Asis said.

She added that inconsistent access to health-care providers, and especially movement disorder specialists, can be a roadblock for many people getting a conclusive diagnosis.

Compounding this, Mathur said, stigma persists for people with Parkinson’s, no matter how old they might be.

“I still have, you know, people in my PD community who are accused of being drunk or on drugs, you know, just because of their physical movements,” she said.

Breaking patient stereotypes

After her diagnosis, Chakkalackal joined support groups for people with Parkinson’s. She said it made her feel less isolated, knowing that there were people who looked like her among her peers.

“There were individuals in their young 30s and people who were not of Caucasian descent. So it really shone a light [that] this diagnosis could really be given to anyone,” she said.

She’s since learned to run, swim and dance living with the condition. Every Thursday, she volunteers at the Evergreen Brick Works, a sprawling urban garden in Toronto.

Getting outside for gardening helps her work on her fine motor skills, while also providing a much-needed social setting in between managing her diagnosis. “It gives me a sense of belonging,” she said.

Research has long shown that physical activity is critical to helping manage Parkinson’s, no matter a patient’s age.

According to research by the U.S.-based Parkinson’s Outcomes Project, at least 2½ hours a week of physical activity can slow the decline in quality of life.

“Exercise is probably the only disease-modifying thing that we have against Parkinson’s disease,” said Mathur. “There have been no drugs that have shown to slow down the progression or stop the progression of Parkinson’s disease. But staying active is vital to do on a daily basis.”

Chakkalackal said her diagnosis has given her a new lease on life because it’s empowered her to learn how to manage her symptoms and learn new forms of self-care.

“Although the diagnosis itself can be a scary process, at the end of the day, you get to decide what it means to you and you get to take actions on what things matter most to you.”