“I can't change the diagnosis of PD, but I can change how I face the diagnosis and the challenges that it brings”

Soania Mathur

Soania Mathur's story seems to be against all odds. Diagnosed with Young Onset Parkinson's at the age of 27, the now-retired family doctor was pregnant when she became aware of a condition that has been with her for almost 30 years. Soania Mathur, who is now 53 year-old, devotes her time to patient education, writing, and Parkinson's advocacy – three objectives that are fully met by the project UnshakeableMD.

Soania Mathur was finishing her residency in family medicine and beginning her career as a physician in Canada when she noticed a slight tremor in her right pinky finger. She was almost 28 years old and pregnant with her first daughter (she has now three in total). The tremor initially seemed sporadic, but concerns grew as it became increasingly consistent. "My husband, who is also a doctor, suggested that I get it looked out. I tried to ignore it since I assumed it was insignificant. But my husband insisted, so I went to see a neurologist, a friend of mine, who worked in the same clinic. He told me he believed the symptoms were caused by Parkinson's disease. I thought that was impossible. I am a young woman. How can this be PD?", asks Soania Mathur.

Not convinced by her colleague's words, she sought a second opinion and visited "the best neurologist in the country," who confirmed the diagnosis of Parkinson's disease. "I was 28, expecting my first daughter and diagnosed with Young Onset PD." After ten years of hiding the symptoms – which were "mild at first and slowly progressing” - from work colleagues and from her "social circle," Soania Mathur chose to divulge that she was diagnosed with Parkinson's disease, as it "became impossible to hide at that point." Despite having a "great husband and a supportive social circle," Soania Mathur remained "constantly worried about the future and about hiding the symptoms," to the point she made a shift in the mindset: “I can't change the diagnosis of PD, but I can change how I face the diagnosis and the challenges that it brings. This shift in mindset is what led me to the advocacy work that I do now."

"I stopped practicing medicine clinically roughly 12–13 years after my diagnosis. So not being able to practice family medicine was a significant life adjustment for me, though I believe I am busier now with my advocacy work than I was back then." In the UnshakeableMD, a webpage created by Soania Mathur, the physician discusses her experiences as both a patient and a doctor, which she considered "unique at the time." “Writing, which I enjoy doing, was the easiest way for me to share my stories with others. I also wanted to promote patient education, because I believe that knowledge is power when it comes to Parkinson's disease”, she adds.

Being a woman with PD

Overall, men are 1.4 times more likely to develop Parkinson’s disease compared to women. And, despite the prevalence rates, there are differences in Parkinson's disease symptoms between men and women. "Women appear to have more dyskinesia and more non-motor symptoms, such as pain, depression, anxiety, fatigue, or mood and sleep disturbances," explains Soania Mathur. She adds that women report more severe symptoms as well as less effective treatment before and during menstruation.

“Unfortunately we don't have the guidelines to support how we should approach women during those times. There are no different medications for men and women when it comes to treating Parkinson's disease. All the studies that have been done mostly included white older men. So the dosages that we have and that are used are based on those studies with white older men. We know that women have different pharmacodynamics when it comes to how they process medications based either on their metabolism, the percentage of body fat or their weight or how hormones affect the absorption of medication, for example."

Now at 53, Soania Mathur states that “due to the unmet needs of women with Parkinson’s disease and the inequity in research” a working group on women and Parkinson’s disease was formed as part of the PD Avengers, a global advocacy group. The women’s group partnered with the The Michael J. Fox Foundation for Parkinson's Research to create “a series of questionnaires that women can answer through the Fox Insight web platform”. Currently, Soania Mathur states that Fox insight is conducting a study of PD. “Through that we hope to gain more insight and data to help direct research. It’s an easy way for women to have their voices heard and help us develop treatments or direct research in a way that may improve their quality of life.”

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