Friday, June 25, 2010

A New Project and a Spokesperson for MS

There is a new project in the works at The Scribble Group.

This project was spearheaded by member, kritterknitter. She chose the following quote by Oscar Hammerstein.
"Walk on, walk on with hope in your heart".

Using this phrase, we were given the task of creating a piece that in our own unique way represents this quote. The first of the projects are now listed in the shop.

This time, the proceeds from the sale of the items will go to Emm's Slackers. Emm's Slackers is a team, headed by our very own Emily (emmsgems). Monies raised by Emily's team (at MS walks, etc) go toward Multiple Sclerosis (MS) Research.

Emily herself was recently diagnosed with MS. She shares her personal experiences with us below.

Four years ago, I overheard my doctor on the telephone, suggesting to the neurologist on the other end, that the results of my CT Scan either reflected toxic exposure, or possibly Multiple Sclerosis. All I remember thinking was, “Sclerosis. What an ugly word.”

I had a CT Scan because I had a been experiencing a wicked headache, an inability to walk a straight line and dizziness for over a week. I hadn’t bothered to mention the numbness in my leg or my chest. What followed is now a reference point in my life: things either happened before or after “I got sick”. Unlike most people diagnosed with MS, I was diagnosed quickly, and didn’t have pre-existing events that would have hinted at a diagnosis of MS. But like most, I was diagnosed at the age of 32: it is most often diagnosed in young adults, between the ages of 15-40.

Multiple Sclerosis is an unpredictable, personal, chronic, and degenerative disease of the central nervous system (the brain and the spinal cord). How I experience MS, is not necessarily the same as how one of the approximately 70,000 other Canadians experience it. My experience with MS has caused me to forgo any gainful or regular employment. Regular, yet unpredictable bouts of vertigo and all-encompassing fatigue make life an hour to hour journey.

MS has no cure. Symptom management is the main goal of physicians. With symptoms as varying as vision problems, paralysis, vertigo, bladder and bowel problems, sexual dysfunction, cognitive challenges, there are many symptoms to manage. Not to mention pain, numbness, fatigue, depression, and mobility issues. On top of managing symptoms, MS patients may have the opportunity to possibly slow the progression of the disease with one of five disease modifying drugs. They are expensive and have uncomfortable side effects – but for me, these drugs help me feel like I have some power.

I try to live with MS, as opposed to “suffer from” Multiple Sclerosis. I could wake up tomorrow morning (or from my nap this afternoon) and not be able to move or feel my right leg. I could also wake up tomorrow, and read that researchers have cured MS – the disease is that unpredictable, and we are that close to ending it.

1 comment:

  1. Honest and inspiring. Thanks for sharing Emily and Carol:)