I'm living with ALS

Editor's note: Virginie Bijon's Essay on living with ALS was originally published on the Facts & Arguments page on Nov. 4, 2009. We're very sad to write that Virginie passed away this week. Donations can be made in her memory to the ALS Society of Ontario. She wrote this over the summer at Big Rideau Lake.

At 41, I considered myself an accomplished woman. I had two healthy, smart children. I was happily married to a supportive man. I had an enviable career as a marketing executive. I was superhealthy, exercised regularly with a personal trainer and was always careful to eat what was good for me.

Things started to change in July, 2007, with a weird sensation in my left leg. No pain, just a kind of stiffness that made it difficult to walk and forced me to make a conscious effort to activate my muscles for an activity that should be automatic. I also noticed the muscles in my left thigh twitched uncontrollably.

When time didn't heal my leg, I decided to see a chiropractor. We had several sessions with no result. My walking was getting so awkward, I would follow someone and get into the rhythm of their steps to help pace my own movement.

The turning point was in October while walking down our street. My left ankle gave way but instead of bouncing right back, it collapsed and I fell to the ground in great pain. As it turned out, my ankle was broken. That was when I admitted I needed to see a doctor.

Six weeks later, I went to my first appointment with a neurologist. He confirmed there was something wrong in the way my nerves were sending signals to my muscles, but further tests needed to be done to understand why. I had three MRIs for my brain, neck and spinal cord.



My next appointment was short. The doctor had prepared himself. “I am not specialized in this area and I have only come across two cases before. I am quite sure you have ALS. It's a neuromuscular disease that affects the nerves that make muscles move. I am very sorry to have to tell you this."

Still shell-shocked by the news, I drove back to my office and Googled ALS. I read that amyotrophic lateral sclerosis, or Lou Gehrig's disease, can be fatal within two to five years of being diagnosed. It is a disease with no cure or treatment that progressively paralyzes sufferers until they can neither breathe nor swallow.

Some people with ALS refer to this moment as their death sentence, and that's how it felt to me. My husband was much more practical. We needed a second medical opinion.

I recovered well from my injury and was determined to walk every step left in me. I fell quite a bit and started using a cane. I now had twitching in every muscle.

123Next