This article which appeared in the London Free Press today touched me
deeply. It is almost a year (June 28) since I lost my sister-in-law to
ALS. Like Parkinsons, younger people are being diagnosed and like
Parkinsons, there is a need for more funding...
June 15, 1999
A courage that did not go unnoticed
By Christine Dirks -- London Free Press
The muscles in his right arm had wasted away and he couldn't hold the
chalk to write on the blackboard so an assistant wrote for him. He had
trouble speaking at times and he tired easily.
Still, Larry Phillips kept teaching. He wanted the students in his
special education class at Wilfrid Jury elementary school to know
obstacles can be overcome. Phillips had amyotrophic lateral sclerosis
(ALS), better known as Lou Gehrig's disease. Eventually, he left
teaching.
The disease quickly took its toll. Soon he could use only one or two
fingers. His leg muscles atrophied. He had trouble forming words and
used a letter board to communicate. His neck muscles had deteriorated
and it was hard for him to hold his head up.
ALS attacks and kills motor neurons in the spinal cord and brain. But
it does not affect the mind. Phillips was mentally sharp. He could hear,
touch, taste and smell. He knew what was happening to him.
The disease killed Phillips much as it has so many others. His
respiratory muscles slowly deteriorated. Then his diaphragm and lungs
collapsed. It had been only 18 months since he was diagnosed with ALS.
Phillips was 42. He left behind a wife, Cathy, and two young sons, Sam,
6, and George, 2. Cathy Phillips said living with ALS was devastating.
"My heart was breaking for all of us. Larry couldn't pick up the boys.
He couldn't even hug them."
Anyone can get ALS. There is no cure. No one knows what causes the
disease, how to prevent it or alter its course. Every day, two to three
people in Canada die from ALS. About 3,000 Canadians have ALS now and
most will die within three years of being diagnosed.
When he found out he had ALS, Phillips wrote an open letter to his
colleagues at Wilfrid Jury. He wanted them to know about the change in
his life. He said it was "a good time" to get the disease because there
was good research
being done and maybe researchers would find a cure that would help
others. He knew he didn't have long but Phillips didn't know he'd go so
fast.
Yet, he kept his sense of humour and did all he could to put people at
ease said Wilfrid Jury principal Bill Tucker. "Larry knew his symptoms
could make some people uncomfortable so he'd do funny things to make it
easier for them. That floored me. I never heard a word of self pity from
him."
Tucker visited Phillips' class shortly before Phillips quit teaching.
"Those kids really looked up to him," said Tucker. "He made a big
impact on their lives."
Lorraine Hewett's son, Kevin, was in Phillips' special education class.
She said her shy son blossomed with Phillips' help. "Larry would urge
the kids to be the best they could be. Kevin has a goal now. He's come
out of himself and we credit Larry for that."
ALS used to be considered a disease of old people. Not any more. (Dr.)
Michael Strong, who heads up ALS research at University Hospital, sees
125 new patients a year, a number he finds astounding. His patients are
young, some much younger than Phillips.
ALS doesn't get the big research dollars. But it should. Learning what
causes the disease, how its course could be altered and possible
treatment assists people with related diseases such as Parkinson's and
Alzheimer's.
Last year, about $300,000 was spent on ALS research in Canada. "It's a
drop in the bucket," said Strong. Yesterday, the students at Wilfrid
Jury school remembered Phillips with a cheque to UH's ALS clinic for
$9,200, raised in a walk and run held in his memory. It, too, is an
astounding number.
Copyright © 1997 The London Free Press a division of Sun Media
Corporation.
--
Judith Richards, London, Ontario, Canada
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