Living with multiple sclerosis

The stories for today's Caregiver Tip Tuesday blog were taken from the Multiple Sclerosis Society of Canada's website.

May is Multiple Sclerosis AwarenessMonth. Multiple Sclerosis, often referred to as MS, is a disabling disease of the central nervous system. The disease attacks the myelin which is the protective covering wrapped around the nerves of the central nervous system. Unfortunately the disease does not have a cure, but researchers are learning more each day about what causes MS and finding ways to zero in on ways to prevent it.

To help promote MS awareness we've highlighted the stories of two Canadians who are currently living with the disease, we hope that their stories will not only be informative but serve as an inspiration for you to volunteer or donate to your local MS Society Chapter!

Levi Barron – Alberta, Canada

My name is Levi and I was diagnosed with Relapsing Remitting Multiple Sclerosis in June 2005 when I was 13 yrs old. It all started one day when I was playing hockey. I was sick and weak and felt horrible.

I started having problems with my right hand. It was hard to hold a pen at school, and almost impossible to take a drink from a glass using my right hand. I remember my mom was really worried. We went to a couple of doctors, but they didn't really think anything was going on.

As my right hand started to get better, my left hand got weaker. Then, my legs got weak. My legs got so bad, I had no feeling in them, and I couldn't stand or walk. I ended up being admitted to the hospital in May. I was so sick and dizzy, I couldn't open my eyes, I couldn't walk or stand. It was hell. I now know that I was having multiple relapses. The initial treatments didn't seem to work, so my doctor decided that we would try plasma exchange. (They took the bad antibodies that were attacking my body out, and gave me healthy donor plasma). This really started to get things working. For the first time in weeks I could wiggle my toes. But then, I had another relapse near the end of my PLEX treatments. The doctor decided to give me chemotherapy to keep my immune system suppressed, so that it wouldn't attack me.

I am doing pretty good now. I can't play a lot of the sports I used to play anymore, but I try and do the best I can and I try to have fun every day. I deal with my illness on a daily basis. Every day is different. Some days I am so tired, it's hard to get out of bed to go to school, some days the numbness and tingling in my legs is more noticeable than other days. Some days, I feel that my legs are just going to give out on me. But every morning when I wake up, I know that I can't give up hope - a cure will be found. There are other children, even younger than me being diagnosed with this disease. We need hope and support that a cure is coming. And I know that with your help a cure will be found.

Cheryl Elliot

Nine years ago, on the last Sunday in April, I was diagnosed with remitting-relapsing multiple sclerosis. Ironically, this is the day the Ottawa Chapter hosts its Super Cities WALK for MS.

Throughout my journey with MS there have been many challenges. Initially, after diagnosis, my main concern was regaining my mobility. In essence, I wanted my pre-diagnosis life back. Nine years later, the greatest challenge I face is breaking down negative societal perceptions of people who live with a chronic illness.

I try everyday to educate people that, even though I have a chronic illness, I am more than MS. I have a chronic neurological disease and, as my body changes, I will adapt to these changes. Since I have been diagnosed with MS, I have learned to re-evaluate my life and focus on what is important to me. When the door closed on my career as a nurse, another door opened: I am now a volunteer with the MS Society of Canada, Ottawa Chapter. I am busier now than I was pre-diagnosis. I am still able to make a difference by helping others, and I have the luxury of working with people who understand the challenges that this disease sometimes demonstrates to me.

I have always lived under the premise that life is not fair and no one ever promised me a rose garden. Yes, being diagnosed with MS was a handful of thorns, and I may end up in a wheelchair at some point along this journey, but until that time I will learn to live with this disease. On bad days, I give in to them and try to soothe myself by reinforcing the fact that this feeling will pass. On good days, however, I seize the moment and leave people in my dust.

For more stories of individuals living with MS or for more information about MS check out the Multiple Sclerosis Society of Canada.