The impact of ALS ice bucket challenge — a social media phenomenon that has swept the world and raised more than $12.8 million in Canada alone — is welcome news to a Guelph couple who are living everyday with the effects of the terminal illness.
"It bothers me a bit that people don’t really know what ALS is," said Dennis Grey, who was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in January 2010. "ALS is a deadly disease. 85 per cent of the people that get ALS don’t survive past five years, and that’s outrageous."
Grey says he is hopeful the millions raised as a result of the challenge will help find a cure.
"I hope that they can eventually find a solution to the problem," he said. "I don’t think they’re going to find a solution for me, but I hope they find a solution for someone else."
The ice bucket challenge involves participants videotaping themselves dumping a bucket of ice water over their heads, posting the video online and challenging three others to do the same within 24 hours. Once challenged, a person has to either partake in an ice water dump or make a donation to ALS research.
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Grey's wife Lorna, who is also his primary caregiver, said ALS Canada provides equipment needed to live with the disease, like lifts and mobility aids. She hopes the money from the challenge will go toward purchasing more equipment, and is glad that the disorder has entered the public consciousness.
"I mean, almost everyone knows at least one person with ALS, but the general public I don’t think really realizes what the disease is, so to raise awareness and to raise funding is amazing."
ALS affects nerve cells in the brain and the spinal cord and is characterized by progressive muscle deterioration. There is no cure and only one medicine to slow its progress has been approved.
"Boy, what a shock," said Dennis Grey, recounting the day he learned of his diagnosis. "Because I’ve been healthy all my life. I had a cold every now and then, but that was about the extent of my illnesses."
He and his wife were only married a year when he was diagnosed.
“We were given a manual at the beginning to read, and on the cover it said ALS: Three letters that will change your life,” said Lorna.
“And I couldn’t even open that book for a few weeks and read it.”
Since Dennis was diagnosed, the disease has progressed quickly. His muscles have now weakened to the point where he has no function in his limbs. He uses a ventilator to help him breathe.
But he is grateful he is still able to speak, which he wasn’t able to do until doctors gave him a tracheotomy tube to help him breathe.
“Now I can say to my wife anything I want, and she doesn’t have to read my lips.”
'She's been amazing'
And with the help of family, friends and care workers, the couple managed the disorder as it progressed.
Their Guelph home is equipped with lifts for Dennis’s wheelchairs. And though the personal social workers come by twice a day, Lorna has been trained to fully care for her husband.
The two are happy to maintain their independence. Dennis can even control his wheelchair with his tongue. He and Lorna go for walks outside whenever the weather permits.
And though Dennis can no longer eat, he continues to take pleasure in his daily coffee. But what brings him the most joy is spending time with his wife.
“Oh, she’s been amazing,” he said. “She’s been my caregiver, and most of all, she’s been my love.”
“It’s been a test at times," said Lorna. "But we just look at all the positive things really.”
"There's no fun about it,” said Dennis. “But you make the fun to make it bearable."
Listen to Dennis and Lorna Grey sharing their story here.