Staying positive after a shattering ALS diagnosis

Belleville resident Charmaine Loverin gives the thumbs-up sign during treatment for ALS, also known as Lou Gehrig’s disease. She is promoting the June 21 online Walk for ALS, which she says has funded critical equipment and support she’s received from the ALS Society of Canada. COURTESY CHARMAINE LOVERIN

Diagnosed with a terminal disease yet moved by gratitude, Charmaine Loverin is helping the charity which helps her.

Loverin, 53, learned in February 2019 she has amyotrophic lateral sclerosis, or ALS. It’s also known as Lou Gehrig’s disease or motor neuron disease.

The illness causes gradual paralysis and, in 80 per cent of patients, death within two to five years of diagnosis.

She’s now telling her story in support of the ALS Society of Canada. The June 21 Walk to end ALS is the charity’s largest fundraiser and this year will be entirely online – something that’s prompted concern about a potential shortfall in donations.

Loverin, who grew up in Frankford, said she knew little of the disease prior to her diagnosis.

She was living in Toronto, raising her two teenagers, working in the adult mental health sector, and active as a runner, skier and inline skater.

“My life was full and I loved every part of my life,” she said.

One day she sprained her foot, tearing tendons, as she’d done in the past. But this time, “The healing process was not normal.

“My foot started to drop and I could no longer lift myself up with that foot.”

Before long, she said, “I just fell for no reason” and broke her leg.

That was followed by slurring her words. Loverin said she wondered if she’d had a stroke or developed multiple sclerosis. She searched online but nothing led her to believe she had ALS.

The diagnosis and life expectancy were shocking.

Loverin said she realized eventually that she could no longer care for herself.

“My sister opened her arms right up to help me move in with her.”

She said her children and her sister and brother-in-law, Belleville’s Michelle and Christopher Barry, give her incredible support, even helping with fundraisers for the ALS Society.

Loverin’s daughter, Emmaskye, now 18, is in university in Waterloo; her son, Ralston, now 17, moved in with his father in Etobicoke.

Emotionally, she said, the changes in her life are “quite a hit.”

The first four months were consumed with addressing immediate needs. She reviewed her will, planned her funeral, and had many difficult conversations.

“I have no pain. But the emotional pain is nearly physical. It takes a lot out of you.”

She does not, however, focus on life expectancy and has learned to be positive.

“I’ve felt the darkness. I’ve felt the anger.

“If I gave in to depression, it probably would take me quicker.

“You need to feel to heal,” she said.

While it takes effort to reach out for help, Loverin said, it’s been worthwhile and even led to some alternative treatments.

In addition to her family, said Loverin, the ALS society has “been my support emotionally, mentally, physically.”

Loverin said she has lost most of her ability to walk but the society has provided numerous mobility devices, lifts, repairs, group and individual support, and more. She is one of 200 participants in a clinical trial for ALS patients, receiving 30 treatments per month.

The society’s Belleville-Quinte walk helps people in Hastings and Prince Edward Counties plus Brighton.

It now supports about 17 people with ALS, said local coordinator Evelyn Wilson of Quinte West.

Wilson lost her father-in-law, Gary Wilson, in 2003 to ALS.

She said rural walks, including hers, are having more trouble raising funds online.

“It’s a tough one because our walk has always been very personal,” said Wilson. Participants usually register and gather pledges in person.

Wilson said ALS research is “very exciting” but in the meantime one patient’s family may spend $150,000 to $200,000 on medical equipment and care. The society can help to offset those costs.

“We have no government funding for this and our lives are at stake!” Loverin said.

“The donor dollar goes a long way and literally saves our lives.”

She said her motto – and her walk team’s name – is “Living into a Cure.”

Loverin encouraged people with ALS to contact the society to get help with the costs – not just physically but emotionally and mentally.

“Definitely don’t do this alone.”

About ALS

• Degenerative disease leading to paralysis and loss of ability to walk, talk, eat, swallow and breathe.
• Each year about 1,000 people are diagnosed in Canada and about the same number die.
• No cure. Few treatment options.
• Not contagious.
• Currently about 3,000 patients in Canada (17 in the greater Hastings-Prince Edward region) and 200,000 globally.
• Each year about 1,000 people are diagnosed in Canada and about the same number die.
• Sixty per cent of funds raised in the Walk to End ALS will support local patients. Remainder funds research.
• For support for patients and families, call the ALS Society of Canada at 1-800-267-4257 or visit als.ca and click the links for “support and services,” then “Ontario.”
• To donate to the Quinte walk, visit tinyurl.com/alsq20. Both the national and local walks are on Facebook. For information on the walk, call Evelyn Wilson at 613-847-0295.