When her family was called together for an announcement, Beth Murray knew the news wasnB次元官网网址檛 good. The B次元官网网址渂omb dropped,B次元官网网址� she said.
MurrayB次元官网网址檚 sister, Donna, had been diagnosed with amyotrophic lateral sclerosis (ALS), more commonly known as Lou GehrigB次元官网网址檚 disease and doctors gave her three to five years to live.
Despite the devastating news, it gave Murray a glimmer of hope. It wasnB次元官网网址檛 cancer, the disease that took both her mother and father, she thought to herself. B次元官网网址楾here might be time, there might be hope.B次元官网网址� One morning in 2013, a year after diagnosis, that hope disappeared when Donna passed.
B次元官网网址淭his (disease) really strikes out of the blue and it can happen to anyone. She was seemingly a healthy active energetic person,B次元官网网址� Murray said. B次元官网网址淪he was a dear friend and so full of life. She was an amazing person who I miss tremendously.B次元官网网址�
The motor neuron disease causes muscle atrophy leading to difficulty speaking, swallowing and eating, and eventually difficulty breathing. There is no known cure.
B次元官网网址淗er body was changing and what she could do one day, she couldnB次元官网网址檛 necessarily do the next day,B次元官网网址� Murray said. B次元官网网址淎t the beginning it was things like getting dressed,B次元官网网址� the Oak Bay resident said. B次元官网网址淚magine what it is like not to be able to use your hands and what that entails, I think we take for granted what we are able to do.B次元官网网址�
ALS continued to atrophy her sisterB次元官网网址檚 muscles, stealing music from her when her hands became so weak she could no longer strum her guitar. Her love of biking was eroded as her arms gave out and she could no longer support her own weight. Eventually her love of the outdoors was taken away, when her muscles were so weak she was in a constant state of exhaustion and even being driven to the park was too much. Over time, her lungs lost the strength to push the carbon dioxide out of her body, and one morning Donna didnB次元官网网址檛 wake up.
It is in her memory Murray climbs on her bike three days a week with the ALS Cycle of Hope. The team of 12 cyclists plan to ride more than 500 kilometres from Kamloops to Keremeos between Aug. 6 and 13, raising funds and awareness for a disease many, including team member Heather MacFayden of Langford, say still flies under the radar.
B次元官网网址淭he more I learned more about ALS, the more I realize how unknown it is,B次元官网网址� MacFadyen said. B次元官网网址淚t is not a high-profile disease yet, it is very cruel. It needs to have some awareness and people need to know about it. I have heard recently through different interviews that the research has made strides B次元官网网址� It is really encouraging and that makes all of what we are doing really worthwhile.B次元官网网址�
Now in its third year, the ride has expanded to 12 riders from five in 2012 and gone from raising $5,000 to $42,000 in year 2. The goal this year is to raise $50,000 towards ALS research and the provision of a mechanical wheelchair for local patients.
MacFadyen watched a friend gradually lose her father to the disease.
B次元官网网址淟osing someone in such a devastating way as ALS, where they get stripped of their dignity and lose everything, and seeing (my friend) go through that, was heart wrenching,B次元官网网址� she said. B次元官网网址淵ou want to make everything better for them and you can only do what you can do B次元官网网址� be their advocate and their voice after the fact.B次元官网网址�
And so both MacFayden and Murray ride, raising awareness and funds along the way. That starts with the Oodles of Noodles dinner/dance and silent auction June 7 at the Edelweiss Club in Victoria, and continues with a community ride on Fathers Day June 15.
B次元官网网址淚 feel Donna would be riding with us if she could have been,B次元官网网址� Murray said. B次元官网网址淪he is the reason that I am doing it. I think of her every time I get on a bike. I feel like I have a hole in my heart B次元官网网址� It is a way for me to use my grieving energy into something positive to hopefully make a different for other families going through this.B次元官网网址�
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