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By MITCHELL SHERRIN
Staff Writer
Little is known about ALS, but the debilitating disease has
taught Salt Spring's Suzanne Boswell to live every moment to the
fullest.
"I try to live day to day, which is probably the way we
should all be living anyway,' said Boswell.
"I live for my garden. I live for my dogs. I try not to think
too much about the future.”
Three years ago,
at age 55, Boswell was diagnosed with ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig's disease. As
a rapidly progressive fatal neuromuscular condition, ALS will
eventually destroy nerves and muscles in her body until she
suffers from heart or respiratory failure. Currently, the
disease is fatal and incurable.
"My hands are going now. It's amazing how many things you
need hands for - opening cans, peeling Velcro."
Only one in 100,000 people contract ALS, but Boswell counts
herself lucky because the disease is progressing slowly in her
body, she says.
"Usually, they say you
die within three to five years of
diagnosis."
But Boswell is frustrated with the knowledge that she can't get
better.
"I've always been a fighter and there's not much you can do,
except in spirit."
Though ALS has been recognized for 100 years, doctors still
don't even understand the causes, and it was only a process of
elimination that left her with a diagnosis of ALS, she said!
"There is no test, no known cause and no known cure."
A physiotherapist visit led to a series of referrals to see
various specialists when she first learned about the disease
that started in her right foot and moved up her legs.
"I used to run on a regular basis. I started tripping and
falling. I just thought I was getting clumsy," she said.
Now Boswell tries to remain active with yoga and aquatic
exercise therapy.
"The aim is to keep what you've got left as long as you can.”
She is also bolstered by support from her husband and
friends.
I have people who help me stay positive.
Boswell wasn’t initially keen to share her personal story with
the public, but she recognizes the need to raise awareness about
the disease.
"It doesn't get the attention that AIDS or breast cancer
gets. It doesn't get the funding."
And a friend recently ran the London
Marathon on her behalf
and raised $5,000 for ALS research, she said.
“I thought, if she can do that, there's got to be something I
can do.”
Boswell's aquatic exercise therapist, Dawn Hogarth, also
offered help by entering an ultra marathon (63.5 kilometres) as
an ALS fundraiser on June 4.
"It turns out that the day I run the marathon is ALS Day,"
Hogarth said.
For the third time she is entering the event that sees 1,000
competitors run between Gold River and Tahsis.
As a challenging marathon of a different
kind, ALS has taught
Boswell about the important things in life: good food, good
friends, good conversation and a connection with nature.
“Everything becomes more precious,” she said.
The article has
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