My ALS Challenge

The news of Catherine, the Princess of Wales’ cancer diagnosis has been all over the news lately. It was amazing how the media’s tune changed from scandal over an edited photo to one of great sympathy, and rightly so. I am happy to hear she is undergoing treatment with so many well wishes for a speedy recovery.

This reminded me of my Dad. In the 1950s, a cancerous tumour was found in his neck. My Dad was in his mid-20s and given six months to live. He went through surgery and radiation treatment and, thankfully, survived. He got married, started a family, and I was born in 1969. He lived a long life and passed away in 2017, having survived cancer.

A great deal of cancer research has been done since the 1950’s. This has led to new drugs and treatments to improve survival rates of this terrible disease that has affected so many. Today, this research has allowed many to say, ‘I am a cancer survivor’. These are great words to hear and a relief to so many.

In January, I participated in a learning program put on by the ALS Society of Canada called the Canadian Ambassador Learning Institute (CALI). During this program, participants were introduced to ALS research taking place, learned about the research process, advocacy initiatives underway and how, as ALS patients, we could help. I also had the opportunity to meet some great people. These people consisted of doctors and researchers across Canada and the US, many people at all levels within the ALS Society of Canada and, more importantly, other ALS patients and caregivers. 

Sadly, one of the ALS patients I met recently passed away, having been diagnosed 4 years earlier. This had a greater impact than I expected. I have read and seen news stories of others with ALS passing away, such as  Borje Salming, Chris Snow, but this was the first person I knew, albeit only briefly.

I think what struck me is nobody has ever said the words ‘I am an ALS survivor’. Currently, there is no cure and life expectancy for 80% of patients diagnosed is 2-5 years. That hasn’t changed from when Lou Gehrig was diagnosed in 1939. What has changed is, over the last 20 years or so, more research has been underway. The Ice Bucket Challenge brought the attention of ALS to the mainstream. But the research for ALS and many other rare diseases still has a long way to go to continue to find treatments and, hopefully, a cure.

In the meantime, I will continue my Virtual Mobility Challenge to raise funds to not only support the ALS society of Canada’s efforts to support patients, advocate and research efforts.

I will continue to make lemonade from the lemons I am given each day by this disease.

I will continue to live the best life I can so the remainder of my ‘dash’ can be as meaningful as possible.

I will also continue to survive so, one day maybe I will be able to say the words ‘I am an ALS survivor!’

So, the next time I get on my bike, I think I might put on Gloria Gaynor’s ‘I Will Survive’, though I do like Cake’s version a bit more.