In Sickness And In Health…

In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?

That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, he’s the one who encouraged me not to ignore the tremor. He was the one I ran to, my eyes full of angry tears, after the first neurologist had the gall to tell me he felt I had young onset Parkinson’s. He sat holding my hand when months later the second well-renowned movement disorder specialist confirmed this life sentence despite my desire to be absolved from the initial diagnosis.

He listened to what my physicians were recommending and took care of the practical side of things when all I heard were words and nothing was registering. And he was the one who [...] continue the story

All For One…

By Soania Mathur

Once again it was a restless night but worth it this time. I got home around 1:30 in the morning wired on a combination of caffeine and Sinemet. The insomnia that ensued was inevitable but I had such a great night eating, chatting, laughing and playing cards with my girlfriends that I have no regrets. It was our monthly girls’ poker group, one of many get togethers that I look forward to on a regular basis. Be it lunching out, dinner at a friend’s place, movie night or simply going out for a coffee, having that social connection is invaluable to me. With three kids and a million duties to fulfill, it’s not easy to find those opportunities but it is something I try and make time for.

Let’s be honest, we are all social beings, granted some of us more than others, and our social network can provide us with the distraction that we sometimes need to escape from our daily stress. It’s nice to lose yourself in the sometimes mindless chatter and not have to think about some new symptom that has cropped up, how screwed up your meds seem or worry about what the future holds. [...] continue the story

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

Aimee Mullins at TEDMED 2009

Record breaking athlete Aimee Mullins delivers an outstanding talk that properly redefines the word ‘disabled’.