[BobbyB]

Proudfoot soldiers on as disease attacks body
Bruce Arthur, National Post Published: Friday, November 21, 2008



MONTREAL -- Tony Proudfoot wants to talk. He wants to tell you what he feels, what he knows, what he believes. But it's hard, and getting harder every day.

For some, Proudfoot's story is well known. How he was a star defensive back with the Alouettes who played in the Ice Bowl, the 1977 Grey Cup in Montreal; how he was the one who came up with the idea of putting staples in the players' shoes that day to gain traction, and Montreal romped.

How he taught physical education at Concordia and Dawson college for 30 years after that; how he ran into the street during the Dawson College shooting in 2006 with a first aid kit as the shots were still ringing out, applying pressure to the head of a kid with a bullet in him, a kid who lived.

"He was the first out the door," says a former Alouettes teammate, Gary Chown.

"I was not surprised that Tony did that," says another, Gordon Judges.

Most of all, people know how Proudfoot was diagnosed with Amyotrophic Lateral Sclerosis, or Lou Gehrig's Disease, in May, 2007. Proudfoot has often described it as a cruel irony: the former athlete and physical education teacher struck by a muscle-wasting disease, the radio broadcaster afflicted with a disease that saps your speech.

"I'm more and more excluded," Proudfoot says, the words slurring, at a side table of the CFL legends breakfast during Grey Cup week. "I can't enter into chit-chat."

Proudfoot has bulbar onset ALS, which first affects the motor neurons that control speech, swallowing and breathing. It kills you faster than the more common variant. Proudfoot is already having trouble breathing and swallowing. He has protein shakes for breakfast, now.

"Everybody knows about me," he says. "I'm dying."

And yet as he dies, he remains full of life. He can still walk, and use his hands. He is a beacon of positivity, smiling and warm, and you would never know he has ALS until he speaks. Then, he has to grind words out, a harsh sound that emerges out from under his bright, sparkling eyes. He carries around a keyboard in a case that attaches to a small monitor and, when he types, it can speak his words for him.

He laughs when he accidentally spells out ‘No whining" with two Ns, and the machine replies, "No winning." Communicating is difficult either way.

But Proudfoot wants to talk. He wants you to know about ALS. He wants you to know that its gets $1.6-million in research funding per year. Cancer, a more prevalent disease, gets about $500-million. He wants you to know that there is no treatment, no cure, no explanation of why it affects one in 3,000 people in Canada, with an incidence rate that rises by about 5% every year.

He wants you to know that without a change in the funding paradigm - without a splash of money from the government or an altruistic individual - it won't change. People will get ALS and they will die without a shred of hope, 150 years after the disease was first identified. He wants you to know that and more about what will kill him and others.

"To make a difference," he says, "we need to change it."

Since being diagnosed, Proudfoot has tried to change it - the Tony Proudfoot Fund has raised $350,000 in a year. He has tried to live, too. His daughter Lauren just graduated from Bishop's and lives at home, while his son Michael moved back from Toronto, and his daughter Lindsay moved back from Halifax. He and his wife Vicki have travelled, when possible.

And the news has somehow been crushing to everybody but the man himself. He laughs, he smiles, always. There is no self-pity. "The way he's handling it," Judges says, "it's incredible. His spirit is always up." Chown simply says, "A strong, strong man."

His teammates wonder if the way they were taught to hit in the 1970s, helmet first, was a factor. They wonder why Proudfoot's roommate, Larry Uteck, contracted the disease, as have six other former CFL players.

But whatever the cause, Proudfoot is bearing his unimaginable fate - to be locked away inside a body that is becoming a cocoon - with unimaginable grace and courage. It is beautiful. It is heartbreaking.

"We have to find a goal in life," says radio host and former Alouette Gabriel Grégoire, who gave an emotional speech at the breakfast that made even Proudfoot's eyes well up. "I think Tony found a way to live, to give an example. I read about a father who lost his kid to the war, in Afghanistan or Iraq, and the dad says about his kid, ‘It's not important how long you live. It's important how you live.' It's like that.

"It's not important to live to 70 years old and do nothing. He's going to live the years he's going to live. But he lives full. He was full with his family, with his book. He was dedicated with the game, with his students, with everybody. That is his life. He is something."

Judges, speaking about him, looks away for a moment. "He's a great man," he says.

He is a giant, and everything but his spirit is slowly being pinned down. I ask how he is not angry, not depressed, not in a black hole. Proudfoot types one word: Pragmatic. Then he speaks, with difficulty.

"What are you going to do?" he says, each word a fight. "What else am I going to do? Like [Grégoire] said [in his speech]: Suck it up. I spend about 10 minutes a day feeling sorry for myself. I worry about the future for my wife, and [children]. But I only have so much time left. I want it to be special. I want to be out there. I'll be down and depressed sometime later. But for now, I want to be out there, interacting with people. My retirement lasts for three years, not for 30 years. So I'm going to live it now."

He looks around the room, his eyes bright. "I love these things. I love the people I'm seeing here. I'm loving the whole week. I'm just happy to be a part of this. You know the part about the glass half full? Well, my glass doesn't have much left. And I want to savour it. There's opportunity everywhere. That's my credo now."

This great man only has so many words left. He wants to make them count.

z To donate to the Tony Proudfoot Fund, go online at sla-quebec.ca and click on the link to the Tony Proudfoot Fund, or call 514-725-2653.

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