by Soania Mathur, MD
It started out as a tremor in my right pinky finger, a faint movement that was hardly noticeable and easily ignored. It was a busy time. I had just completed a residency in family practice and was expecting my first child. But eventually what began as a sporadic tremor became more constant and concerning. Within a few months what I had thought was a benign annoyance was diagnosed as an incurable, progressive neurological illness—Parkinson's disease at the age of 27.
And so my struggle with denial, anger, fear and secrecy began. As the tremor worsened in my right hand, then my right foot, and ultimately progressed to the left side of my body, I immersed myself in work and our growing family, which eventually included three beautiful daughters. It was easy, for a short time, to distract myself with the joys of motherhood—children and their innocence and joyful attitude are therapeutic in their own right. But despite the "happy face" I needed to put on for them, beneath the surface I was in a constant state of emotional turmoil. I couldn't come to terms with this loss of control over my life.
Parkinson's has always been an unwelcome part of my mothering experience: while changing and bathing my girls as newborns and styling their hair as they grew older; helping them with their school projects and running after them in the yard; showing them how to color inside the lines and teaching them how to use a knife and fork. Although some of these examples may seem rather trivial, when limitations are placed on you by a disease that never gave you a choice, it is supremely frustrating.
Along with the obstacles that developed in my personal and family life, the limitations I faced resulted in my early retirement from clinical practice after 12 busy and difficult years. For a long time, I focused on these difficulties and the losses I was experiencing in all areas of my life and everything that I felt I was giving up. My focus was solely on disability.
But then things changed because they had to change. I was growing tired of the stress. It worsened my symptoms, and it was changing me as a person. Through careful introspection I recognized that I needed a shift in my perspective. And it came—a life-altering realization that although the diagnosis is not within my control, how I face this challenge is ultimately mine to determine.
With that change in my outlook, I went from a position of helplessness to one of true personal power. And that empowerment was liberating, allowing me to move beyond my disease, to focus on those variables in my life that I do have control over. In fact, I now look at this chronic disease as a blessing, a life experience that has shaped me into the person I am today. It opened a whole new world of educating other patients and inspiring them to live well and to take an active role in finding a cure through advocating for Parkinson's research, participating in a clinical trial, and fund-raising.
This proactive approach allows me to remain engaged mentally and emotionally, which contributes to my sense of well-being. After all, with a loving husband and three precious girls to raise, what is the alternative? Many times I do still worry about how my illness may be affecting my daughters. Realistically a diagnosis such as Parkinson's is one that affects the whole family unit, particularly the most vulnerable, our children.
A couple of years ago, we were having a family discussion after attending a recent Michael J. Fox Foundation event in New York. We asked the girls, "So, do you know why we attend all these events?" My middle daughter, who was 10 years old at the time, said, "Because you have Parkinson's." Her answer shocked us, because, although I was open with my symptoms, we had never formally discussed it or given it a name. Then all three of my daughters told us that they were going to start giving their allowances to finding a cure because they wanted me to be better.
Somehow I held it together, we hugged and it was a really amazing moment. This discussion opened the door to educating them more about the disease itself and further enabled communication about how our family was going to approach this challenge together.
And that's how we face the challenges that Parkinson's brings to our family—together. Despite my desire to shelter the girls from any undue stress, we were able to recognize that regardless of their resilience, children can develop fear or anxiety around issues they don't understand. We found it's important to be honest in your disclosure. Children are intuitive and can easily develop a fear of the unknown if they feel a parent is hiding something from them.
If you do decide to disclose any details to your child, my advice is to use terms that are directed toward their education level and maturity and do so in the context of hope. Honor their natural optimism. Once you've laid the framework for ongoing, open dialogue, give them concrete ways to help out, be it with daily tasks such as housework or more proactive activities such as fund-raising. Through this they will feel empowered in a situation that is, in reality, beyond their control.
Despite the struggles, I must admit that as infuriating as this disease is at times, in some ways, it has also been my ultimate blessing as a parent. It has taught me to prioritize my family, to never take anything in life for granted and to face each day with a sense of gratitude and optimism. And, not least of which, this disease has definitely taught my children a lesson in perseverance: that life will have its share of challenges but how they face those obstacles is what will define them as individuals.
Dr. Soania Mathur is a family physician living outside of Toronto, Ontario, with her husband and three daughters. She had to resign her medical practice as a result of her young-onset Parkinson's disease and is now a dedicated speaker, writer, educator and Parkinson's advocate. She serves on the Patient Council of The Michael J. Fox Foundation for Parkinson's Research.