Mauril Bélanger gave ‘devastating’ disease a public face, says ALS patient

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Three times a day, Heather Greenhalgh’s husband prepares a formula and hooks her up to a feeding tube in the living room of their Orléans, Ont., home.

Their wedding picture from six years ago, when life wasn’t as complicated, is on the mantle a few metres away.

Gone are the days of golfing and family trips with their grandchildren. This daily ritual is now their reality.

In February 2014, the 61-year-old was diagnosed with ALS, the same disease that claimed the life of Ottawa-Vanier MP Mauril Bélanger.

ALS patient

Greenhalgh and Tricklebank were married six years ago, before the 61-year-old’s ALS diagnosis. (CBC/Hillary Johnstone)

Also known as Lou Gehrig’s disease, ALS (amyotrophic lateral sclerosis) moves rapidly, killing nerve cells and paralyzing muscles, and patients typically die within two to five years of a diagnosis.

It’s a devastating disease, but Greenhalgh says watching Bélanger fight the same battle these past few months has given her strength.

Bélanger ‘did more for ALS than anyone’

“I cried. I saw [he’d died] on the news … And I cried. He was an amazing man who did more for ALS in Canada than anyone,” said Greenhalgh, who now struggles to speak.

“He was able to … increase awareness of ALS because he had the media exposure from coast to coast,” said Greg Tricklebank, helping to translate for his wife.

Greenhalgh said it was “inspiring” when Bélanger pushed his walker into the House of Commons in March to be the honorary Speaker of the House of Commons for a day.

The couple said Bélanger also put a public face on a disease they’ve sometimes struggled to explain to friends and strangers.

“I tell people [about ALS], and they look at me with a blank face,” said Greenhalgh.

Tricklebank said sometimes people tell him, “‘Oh, I hope she gets better soon.’ And of course … you have to say, ‘Well, that’s not going to happen, because [ALS] is terminal. And that’s hard.”

From fully mobile to using a wheelchair

Making ALS more visible is exactly what Bélanger and his wife Catherine hoped his diagnosis would do for other Canadians, according to Tammy Moore, CEO of ALS Canada.

Belanger Speaker 20160309

Mauril Bélanger receives a standing ovation as he makes his way to the Speaker’s chair in the House of Commons on March 9. Bélanger died Tuesday of ALS. (Fred Chartrand/Canadian Press)

“I had the opportunity to meet [him] early on in his diagnosis, in January. We talked about what Mauril wanted to do, and how he wanted to be able to leave a legacy,” Moore told CBC News.

The Ice Bucket Challenge, which went viral two years ago, was great for raising funds, but it also “presented [ALS] as an activity,” said Moore.

Bélanger, however, “really demonstrated what the disease looks like,” going from being fully mobile in October 2015 to using a wheelchair and losing the ability to speak by June 2016.

‘My heart goes out to his wife’

Bélanger became a national honorary spokesperson for ALS Canada and made one of his final public appearances at Ottawa’s Walk for ALS in June.

“When [Canadians] can see it come to life as they have with Mauril, it’s hard not to feel that compassion and that understanding of what it means to have an ALS diagnosis,” said Moore.

​It’s something Greenhalgh and her husband now understand all too well.

And even as they face a difficult future, Greenhalgh said she wants Bélanger’s wife Catherine to know what her husband meant to her.

“My heart goes out to his wife,” said Greenhalgh. “She had an amazing husband. And it makes me believe she must be an amazing woman.”

ALS patient

Greenhalgh holds a photograph of herself with her two young granddaughters that was taken before her diagnosis. (Hillary Johnstone/CBC)

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Mauril Bélanger gave ‘devastating’ disease a public face, says ALS patient

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