344 THE ADVOCATE
VOL. 79 PART 3 MAY 2021
When we got back to Vancouver, I worked for a while at a legal non-profit,
then joined TELUS as an in-house counsel, specializing in employment,
pensions and benefits law. Adrienne began teaching elementary school. We
eventually bought a house in North Vancouver and were lucky enough to
start our family.
We now have two beautiful kids, a boy and a girl, aged ten and eight.
Before ALS, our life was busy and happy, full of activities, friendships and
strong family relationships.
Then came the diagnosis that shattered our lives. I took four months off to
process the devastating news, but also to make a summer full of good memories
with Adrienne and the kids. I returned to part-time work that fall, but
the quick progression of my disease forced me to stop working in April 2020.
I’m now a former member of the bar of British Columbia. But I remain
an advocate, probably a fiercer one than I ever was at the bar, now on behalf
of ALS patients and everyone impacted by the disease.
THE SICK TRUTH ABOUT ALS
ALS is unrelenting, and it can affect anyone, of any age, at any time. Currently,
there is no cure.
A neurological disease, ALS gradually and insidiously paralyzes you
because your brain is no longer able to communicate with the muscles of
the body that you can typically move at will. Over time, as the muscles of
your body break down, ALS will take away your ability to walk, talk, eat,
swallow and, eventually, breathe.
Eighty per cent of people with ALS die within two to five years of being
diagnosed. Those who live for longer than five years usually rely on a ventilator
through a tracheostomy and can only communicate with their eyes
and eye-gaze technology. It has been described as living in a glass coffin.
Despite the fact that ALS was first identified 160 years ago, and Lou
Gehrig died of it 80 years ago, there are currently only two drugs approved
by Health Canada to treat it. Neither is particularly meaningful. For the
patients who respond well to the drugs, the most they can do is extend your
life by months, not years.
In my case, I have gone from being able to travel to Montreal on my own
in December 2019 (to participate in a clinical trial) to now not being able to
leave the house on my own.
At the start of 2020, I could walk unassisted, dress myself, shower on my
own, eat with a fork, tuck my kids in at night, drive a car, work and do
almost everything I had previously done, except for skiing, riding a bike and
lifting heavier objects.