Background Information
I am Soania Mathur, a family physician living outside of Toronto, Ontario, Canada. I am no longer in clinical practice, having resigned 12 years following my diagnosis of Young Onset Parkinson’s Disease at age 28. Although leaving my medical practice was extremely difficult, I now dedicate my time as a speaker, writer, educator and Parkinson’s advocate.
What I am most passionate about is empowering those diagnosed with Parkinson’s disease to adjust physically and emotionally to the challenges of this illness and the coping strategies available to patients. My advocacy work also focuses on clinical trials and the importance of the patient voice and involvement in research. To help in my work, I founded UnshakeableMD, which serves as a platform to educate and inspire those living with this disease to take charge of their lives, to live well with Parkinson’s.
I was privileged to join the Patient Council of The Michael J. Fox foundation for Parkinson’s Research in 2010 and have served as Co-Chair for the last four years and recently became a new member of the Executive Science Advisory Board at MJFF. Supportive of other organizations I also devote time as a member of Board of Directors at The Davis Phinney Foundation, am part of the Editorial Board for the Journal of Parkinson’s Disease, serve on The Brian Grant Foundation Advisory Board and the Medical Advisory Board for Parkinson Canada and also work with Parkinson’s Movement UK, Cure Parkinson’s Trust and World Parkinson Congress. Locally I am a member of the Board of Directors for the Lakeridge Health Foundation and also sit on the Patient Advisory Board for the Toronto Western Hospital Movement Disorder Clinic.
I have a special interest in helping educate the youngest affected by the stress of this chronic disease. To help facilitate dialogue between children and their loved ones, I have authored two books: “My Grandpa’s Shaky Hands” and “Shaky Hands – A Kid’s Guide to Parkinson’s Disease.” All proceeds from the sales of these books are donated back to support Parkinson’s research and other efforts that serve the PD community.
This trajectory that my life has taken is a far cry from my beginnings as an only child of immigrant parents from India, both teachers and lovingly overprotective. I married my adoring and supportive husband who I met when I was 18 and now have 3 beautiful daughters. Everything in my life was what some have described as picture perfect until the day I received my diagnosis of YOPD and then the struggle began. But now over two decades since my diagnosis, what I have come to realize is that I may not have a choice in my diagnosis but how I face the challenges this disease brings, is mine to determine.
Five Questions
How did your PD diagnosis come about?
My symptoms started with a slight tremor in my right pinkie finger. Curious, I thought. As a doctor at the start of my medical career, I had heard patients describe a tremor before but to actually experience it, was medically intriguing to me. Initially I was too preoccupied to pay any attention to it, as it was sporadic at the best of times. But as the weeks and months passed, I noticed that the slight intermittent movement in my finger became more constant and worrisome.
At my husband’s concerned request, I decided to consult a neurologist colleague at the new clinic where we just started our medical practices. After a ream of neurological testing, he looked at me pensively across the desk and slowly and carefully stated that he thought it was Young Onset Parkinson’s Disease. In that moment, the ambiguity of the situation changed into fear. No real tests, no imaging studies, just a series of clinical assessments that I was very familiar with but didn’t think were sensitive enough to conclude such a life-altering diagnosis. I wasn’t convinced so I accepted a referral to the country’s most experienced Movement Disorder Specialist but he didn’t exonerate me from the diagnosis I had been given, but instead confirmed it. What I had dismissed as an annoying intermittent tremor in my right pinkie finger had now evolved into a diagnosis of Young Onset Parkinson’s Disease—at the age of 28.
What are some of the significant challenges you face, and how do you meet these challenges?
I’ve been dealing with the ruthless progression of this disease for over two decades now. Initially the struggle was more about how inconvenient the symptoms were. Although not overly severe, the tremor and stiffness, insomnia and pain interfered with my activities as a physician and my personal life as I tried to balance family and home. Now the symptoms are more relentless, and I find myself facing the challenge of just feeling well, the fatigue and sense of apathy are more overwhelming, and the “off times” are more prevalent than the “on” sometimes. It is no longer about the to do list, it is about maximizing my quality of life. Quality of life is my ultimate goal and I view every new or worsening symptom as a challenge. A challenge that I try and face with the medical knowledge that I have, my lived experience with this disease and the wisdom of others in my PD community that may have faced similar circumstances.
How do you cope with having PD?
True acceptance of my diagnosis has been the first step. At some point it became very clear to me that until a cure is found, my future included Parkinson’s disease. The diagnosis itself is not within my control but how I faced this challenge and my resulting life experience, is mine to determine. The power of choice—to choose optimism over despair.
So from personal experience I know that in my case, this change in outlook from pessimism to optimism, has helped me cope, has allowed me to move forward. Instead of being preoccupied with my fears of the future, it has allowed me to take on an active and informed management role in my own disease, which essentially improved my life experience. And only with that shift in thinking have I been able to begin to move forward, concentrate on maximizing my quality of life because until a cure is found, we have to learn to live well with this disease and thrive despite the limitations that it places on us.
What has surprised you most about living with PD?
I think that what has surprised me most about living with PD is the strength of the human spirit, the ability to continue to thrive despite the challenges this disease presents. And I’m talking about the strength of those in my Parkinson’s community, the inspirational people that I witness everyday getting up and pushing through the daily barriers they face. That despite the relentlessness of the effects of this disease physically, mentally, emotionally and spiritually, people with Parkinson’s continue to persevere, to support each other and to find ways to try and push past that which seems insurmountable. Their degree of strength and dedication and optimism is what has impacted me the most.
What wisdom would you offer someone who is newly diagnosed? Or, what would you want your newly diagnosed self to know about the journey ahead?
I posed this same question to myself a few years ago and this is the letter I wrote, “To My Newly Diagnosed Self.”
To my newly diagnosed self. I just wanted you to know that you will eventually have three beautiful daughters and even though you worry about how you are going to raise them while facing a disease that will challenge you every day, you will make it through joyfully. Your children will give you strength and through their experience and your example, they will learn empathy, compassion and perseverance. Parkinson’s may make some of the physical aspects of parenting a little harder but some day your daughters will look at you and say “We want to be just like you”…
To my newly diagnosed self. I just wanted you to know that after 12 years of a busy and successful career as a physician, you will have to retire early. But I also want you to know that your patients and co-workers will be nothing but supportive of your decision. And that Parkinson’s will open up a whole new world and lead you to a more fulfilling path of educating and inspiring patients to live well with this challenge while advocating for better treatments and that much needed cure. Parkinson’s may take away one career, but it will give you the opportunity to do your life’s true calling…
To my newly diagnosed self. I just wanted you to know that your marriage will grow stronger not only despite of but because of this disease. The man you recently married will turn out to be your biggest support, your rock. Parkinson’s has taught you both not to take each other for granted, that life can change at the blink of an eye and the most important thing is the relationship you have. That one day you will ask your husband what he would have said to that naïve girl he met over twenty years ago had he known what the future held and his simple reply would be “What time should I pick you up?”
To my newly diagnosed self. You may not feel it at the moment but Parkinson’s will be your ultimate blessing, not the curse you see it as. That facing this challenge will teach you humility, empathy and strength. That it will force you to live in the moment, to take nothing for granted. That it will not defeat you as you may now believe, but instead be the very element that causes you to thrive.
To my newly diagnosed self. No one really knows what life will bring. At some point you have to abandon your fear of the future and begin living your present.
To my newly diagnosed self. Stop living in such angst. I know what the future holds for you and you are ready to face it head on.
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Thank you, Soania, for speaking with PD Wise.