ALS is a thief. It takes lives every day – whoever, whenever and wherever it wants. Anne Daniel knows all too well the pain it brings.
Her husband, Cary, was 6 years old when his father died from the rapidly progressive neurological disease. Forty-four years later, Anne watched as her husband died from the devastating illness.
“ALS robbed my husband of the opportunity to know his father and ALS has robbed me of a future with my husband,” said the Western Libraries archivist.
Today, Daniel is carrying her husband’s memory forward, and promoting hope for other sufferers of the devastating disease, by co-ordinating the London Walk for ALS, set for Sept. 24 in Springbank Gardens Park.
“It’s an important cause to me, one that has affected my life,” she said. “This is my chance to give back and push for awareness and research funding,”
ALS (amyotrophic lateral sclerosis), sometimes called Lou Gehrig’s disease, is a fatal neurological disease that attacks the nerve cells responsible for controlling voluntary muscles, such as those in the arms, legs and face. While the gradual degeneration and death of these neurons eventually leads to respiratory failure, the mind is not affected.
“ALS robbed Cary of the ability to speak, swallow, eat and eventually breathe. It was hard for both of us because, ultimately, you end up paralyzed and I just can’t imagine that – having your mind intact,” she said of her husband, who also worked at Western, as a metadata librarian in Library Information Resources Management at Elborn College, prior to his death in 2011.
“You know what you want to do – but you can’t do it. There’s nothing you can do.”
Daniel said her husband’s diagnosis in 2009 at age 48, while alarming, didn’t come as a surprise to either of them. Cary was the fourth family member to suffer from it. Since then, two more family members have been diagnosed.
“It really wasn’t a shock, but that doesn’t make it any easier,” she said. “You always think it’s going to happen to someone else. I always knew it was out there, but didn’t think it would happen to him. We took it day-by-day because you never know what the illness is going to affect next. You cope with each day as it comes.”
The pair focused their time taking part in the Walk for ALS to helps raise awareness and funds for research. Other than controlling the disease to some extent with medication and therapy, there is currently no treatment.
“They are doing great research here at Western, and making progress, but there is no effective treatment yet to stop it,” she said. “Once you get a diagnosis, it’s just a matter of time. You cannot think about the fact it is terminal; you just need to live every day. Researchers are very optimistic, so we have to keep raising money. You have to have hope there will be a breakthrough one day.”
For Daniel, ALS remains a part of her life and she wants to do her part to find a cure.
“Even if there was treatment, we’d still do the walk,” she said. “You have to step forward and move forward if there’s going to be any change.”
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TAKE STEPS FORWARD
For information on participating, volunteering or corporate sponsorship of the London Walk for ALS, Sept. 24, contact Western Libraries archivist Anne Daniel at firstname.lastname@example.org. You can also find out more about Daniel’s story at the site.