Part 1 of 3: A confirmed diagnosis of amyotrophic lateral sclerosis means the afflicted will become progressively paralyzed as this degenerative disease attacks the brain and spinal cord. Eighty per cent of people with ALS die within two to five years. In the meantime, there is only one choice:
LIVING WITH ALS
As a former star defensive back for the Montreal Alouettes, Tony Proudfoot has faced many fierce opponents. But in May of 2007, he and wife Vicki were given news that would make the rigours of football gentle by comparison: he has ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease).
Approximately 80 per cent of people with ALS die within two to five years of diagnosis. “They usually die from respiratory failure or pneumonia.
Until that time, there is progressive weakness. In the end stages, the typical person is quadriplegic. They can’t speak any longer and have difficulty swallowing; without medical intervention, they can’t maintain nutrition or breathe,” says Sanjay Kalra, neurologist and co-director at the University of Alberta ALS Clinic. Another cruel characteristic of the disease is uncertainty.
“Progression is very different from person to person – one can begin with weakness in his or her leg, another with speech disturbance. Each person’s disease progresses at a different rate, some relatively slowly, some much more rapidly,” says Dr. Kalra. “There is the initial shock of diagnosis, and you might come to an acceptance of that. But then you suffer another loss – you start with difficulty walking, perhaps, and you come to cope with that – but then your speech deteriorates.”
Mr. Proudfoot is on permanent disability leave from his teaching job at Dawson College, and was an Alouettes broadcaster until his failing speech made that also impossible.
He considers himself one of the fortunate ones, in part because the progression of his disease seems comparatively slow. “There’s hope, because day to day, there’s not much change. I’ve talked with other patients who have no hope, the ones who die within nine months, and that to me is much more devastating. For me, the adjustments are easy because I have a lot of time to develop new strategies. Ninety-five per cent of the time I’m okay with it. Five per cent of the time I may be depressed and a bit morose. But in general, I’m really trying to focus much more clearly on a reprioritized life.”
That reprioritized life involves a series of six-month plans, focused largely on spending time with his wife and three adult children, and on reconnecting with old friends. He wants to stay involved with football and perhaps write another book. (His first, First and Goal: The CFL and the Pursuit of Excellence, was published in 2006.) He also hopes to change the way ALS research is funded.
When people are asked to give to charity, he says, they’re likely to support causes with which they have a personal connection. Because cancer, heart disease and diabetes are more common, research in those fields is supported first.
“I can’t see an easy solution. It’s one of the reasons I’m trying to be as public as I can, so that more people are aware of this issue. I hope to do some lobbying for more public research support. Perhaps there are companies that would like to become major backers of this effort.” In the meantime, he says, “I’m living my life the way I want to. I’ve had a very good year, and I’m hoping to continue on.”
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