When the family was called together for an announcement, Beth Murray knew the news wasn’t good.
Then “the bomb dropped,” she said. Her sister Donna had been diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease, and doctors gave her three to five years to live. Despite the devastating news, it gave Murray a glimmer of hope. It wasn’t cancer, a disease that took both her mother and father, she thought. There might be time; there might be hope. One morning, a year after the diagnosis, that hope disappeared.
“This (disease) really strikes out of the blue and it can happen to anyone. She was seemingly a healthy, active, energetic person,” Murray said. “She was a dear friend and an amazing person and so full of life who I miss tremendously.”
The motor neuron disease causes muscle atrophy leading to difficulty speaking, swallowing and eating and eventually difficulty breathing. There is no cure.
“Her body was changing and what she could do one day, she couldn’t necessarily do the next day. At the beginning it was things like getting dressed,” the Oak Bay resident said. “Imagine what it’s 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.”
ALS continued to atrophy her sister’s muscles, stealing music from her when her hands became so weak she could no longer strum her guitar. Her love of cycling 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 didn’t wake up.
It is in her sister’s memory that Murray climbs on her bike three days a week with the ALS Cycle of Hope, alongside a team of 11 others who will ride more than 500 kilometres from Kamloops to Keremeos August 6 to 13, raising funds for a disease many, including her teammate Heather MacFayden, say still flies under the radar today.
“The more I learned more about ALS, I realized how unknown it is. It’s not a high-profile disease yet; it is very cruel,” she said. “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. … It’s really encouraging and that makes all of what we are doing really worth while.”
Now in its third year, the ride has expanded to 12 riders from the inaugural five in 2012 and has gone from raising $5,000 to $42,000 in its second year. This year, they hope to raise $50,000 towards ALS research and to purchase a mechanical wheelchair for locals suffering from the debilitating disease.
“Losing someone in such a devastating way like ALS where they get stripped of their dignity and lose everything, and seeing (my friend) go through that was heart wrenching,” MacFayden said. “You want to make everything better for them and what you can do is be their advocate and their voice after the fact.”
And so both MacFayden and Murray ride, and fundraise along the way, starting with their big fundraising event Oodles of Noodles at the Edelweiss Club on June 7, and a community ride on Father’s Day in the hope that one day there will be a cure.
“I feel Donna would be riding with us if she could have been. She’s the reason that I’m doing it. I think of her every time I get on, knowing if she had been able to, she would be riding as well,” Murray said. “It’s a way for me to (turn) my grieving energy into something positive so hopefully it will make a difference for other families going through this.”
For more information visit cycleofhope.ca.
– Arnold LIm / Oak Bay News
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