Now To Tell the Kids…

By Soania Mathur

Time to tell the kids… As I laid down with my youngest daughter tonight, as I usually do while she drifts off to sleep, she looked at me and asked in a tired but inquisitive voice, “Were you born with Parkinson’s”. “Well, it’s a little complicated…” I began. This is just one of many questions I’ve fielded from my girls over the years. “Does your medicine make you feel better?” “How can you swallow so many pills?” “Mama, why are you limping? Did you hurt your foot? ” “Why can’t they find something to make you better?” And my favorite “If I hold your hand forever, will it stop shaking?”

I still marvel at the matter-of-fact nature of the conversations we have about Parkinson’s and the comfortable manner in which our girls discuss this disease. It’s exactly the way I had hoped my Parkinson’s would be perceived by my daughters – as a part of life’s challenges that can be dealt with, not as a frightening life stressor. Children these days are having enough difficulty navigating the world, dealing with school, peer groups, hormones and so on and the last thing I ever wanted was to add to their burden.

Let’s [...] continue the story

Cancer Can’t LOVE Like This

Cancer Survivor: Daniel Stolfi Diagnosis: Non-Hodgkin’s lymphoma Date of Treatment – March 2008-March 2010 Relation: Girlfriend

I don’t know how to put this. Long story short – I found out Daniel was sick a month into his treatment. I was devastated. It took me days to call him and then I finally manned up to it. Once we talked, our relationship blossomed over time. Dan and I know each other from theatre school (2002). Daniel’s illness shook our group of friends from University greatly. All were incredibly supportive and loving, but there was something inside my heart that wanted to be by his side. To this day, I have no idea what it was, but now he’s my love and I’m so blessed to have him – everyday.

I spent two years being a part of something very scary, sad and painful. It was hard to watch someone be so sick. I felt helpless and unsure of what to do at times. I questioned his illness, I cried a lot, I was frustrated, and I wanted answers. It brings tears to my eyes to remember how hard it was to know that I couldn’t really do anything to take the pain away.

 

Then, I finally realized [...] continue the story

I Let Her Die: A Story of Suicide by Starvation

What does it mean to be a human being? What does it mean to live a dignified life? Should the two not go together? When a person no longer has any real awareness of her existence, no recognition of previously loved friends and family, no control over body functions, no ability to feed herself, is this a dignified life? Is this a human existence? How much worse the situation must be to a person who exhibits all of the above losses, but who still retains enough lucidity to understand the situation. Living must be a torment, a “hell” on earth, except to those who still retain a belief in a “heaven” after death. To someone like that, the only control left, is over food. Whether to eat and live, or refuse to live, and die. Suicide by starvation. I was faced with just that situation.

I let her die. When my aunt was admitted to a nursing home, she weighed about ninety pounds, and was hardly eating. The team of doctors, nurses, social workers, psychiatrists, suggested a feeding tube. They were shocked by my immediate refusal, as they felt it was the only way to keep her alive. I was the [...] continue the story

My Rise From Near-Self Destruction

To be or not, as Shakespeare said, or to live or not to live. That was the question which plagued me. I was now seventy-seven years old. Did I want to live into my very senior years, given that I had developed neuropathy which was hampering my ability to walk and causing me great pain? Then, a further question appeared; would it take more courage to commit suicide, and avoid the painful future which would include a lessening of my faculties, both physical and intellectual, and would include requiring someone to look after me, or to choose to live, and accept the years and changes to come, as a challenge?

I had always been healthy, strong, and independent. Thus the concept of not walking, and needing someone to look after my daily needs was an anathema to me. The neuropathy had probably been developing over many years, as I can now recall getting tired faster, and not being able to walk as far. Also there appeared a numbness and tingling sensation in my legs, along with pain up my legs and into my back. As well, the tingling had begun in my fingertips. So now fear really set in. How long [...] continue the story

A Patient’s Perspective: Soania Mathur

Soania Mathur’s early-onset Parkinson’s diagnosis has allowed her to live more in the moment in her role as a mother, wife, and physician. Soania explores how Parkinson’s has affected her children and how disclosure is crucial for someone diagnosed with Parkinson’s.

January 17, 2012

Dr. Soania Mathur is a family physician who retired from practice due to Parkinson’s disease. She is a speaker at patient-directed conferences for the Parkinson’s Society of Canada and is a resource for education projects. She serves on the Patient Council of The Michael J. Fox foundation for Parkinson’s Research and is an advisor to The Brian Grant Foundation. More from Soania Mathur.