ALS suddenly stole victim's freedom

Fri, September 26, 2008

'Devastating' neurological disease kills two to three Canadians a day

By JOHN MINER



A year ago, Bill Harland McAdam was building a shed with his son. Eight months ago, he was hiking with a backpack in New Zealand.

Today, the London man is in a wheelchair, unable to control his hands enough to work the electronic controls, his breathing assisted by a device that pumps extra air into his lungs.

"Every day is different. What you have one day may be gone the next," said McAdam, 58, a retired Transportation Ministry vehicle inspection supervisor.

McAdam has ALS -- Amyotrophic Lateral Sclerosis -- a neurological disease that kills two to three Canadians a day. There is no cure.

Like many, McAdam knew little about ALS when he noticed a weakness in his left arm last summer. He started having to use two hands to open doors.




At first, he blamed it on a heart attack he had a year earlier, and the side-effect of medication.

His doctor told him muscle twitches he started having were nothing to worry about and he and his wife, Madonna, left in January for a trip to New Zealand and Australia.

He was tired on the trip, often preferring to sleep rather than go for dinner on the cruise ship.

When he fell and was disoriented during a stop in Sydney, Australia, the couple realized there was a serious problem.

Shortly after returning to their retirement home in Bayfield, McAdam became so weak he could hardly move.

A week of testing ruled out possible ailments such as multiple sclerosis. It was finally determined he had ALS.

"It was devastating," he said.

"It is like living a nightmare every day," said his wife. "You wake up and you are hoping it's been a nightmare that you had and your life isn't this and then you realize it is your life."

For McAdam, the disease has progressed faster than it does for many patients. It stripped away his ability to walk, or even use a scooter, in only a few months.

On average, people live three to five years from the time of diagnosis.

"The only way you get through this is you live for today. I don't think you ever come to grips with it," said Madonna McAdam.

"Material things take a back seat. People take a front seat," Bill McAdam added.

The one consolation is his ALS is not part of the small group that has a genetic connection, reducing the fear it might hit their children.

Despite his limited physical abilities, McAdam plans to participate in the London Walk for ALS tomorrow.

Dr. Michael Strong, medical director of the ALS clinic at London Health Sciences Centre and the Arthur Hudson chair in ALS research, said the disease is more common than people think.

"The problem with the disease is we don't actually know what causes it," he said.

In London, 24 researchers are working on unravelling aspects of the disease, such as trying to understand what's happening inside cells. That makes London one of the largest ALS research centres in North America.

Strong is optimistic advances will be made in finding how to stop the disease, starting with the genetic types.

"I wouldn't be surprised that . . . we are actually able to arrest it in a very specific genetic form. Then the door opens. As soon as you've got one, then you are on a roll," he said.

IF YOU GO

What: London Walk for ALS

When: Tomorrow at Springbank Gardens, 285 Wonderland Rd. S., London

Registriation: 8:30 a.m. Walk starts at 10 a.m.

Website: www.walkforals

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