Wednesday
September 29, 1999: Duncan McKinlay still remembers the moment that
save his life while battling a deep depression.
He was 19 at the time and suffering from a disorder that caused involuntary
sounds and movements in his body. That behaviour drove a wedge
between McKinlay and his parents, who couldn't understand why he
was constantly acting out.
With little support at home or school for a problem he had a tough time
controlling, McKinlay said it wasn't a question of if he
would finally kill himself, but when he would end his suffering.
That self-loathing stopped the day McKinlay read an Ann Landers'
column and found out there were people out there like himself.
More importantly, he finally put a name to his disorder -- he was suffeeing
from Tourette Syndrome.
"I instantly knew that was me," said McKinlay. "From
that day forward my tics have come out a lot more, I know I'm okay."
It has changed his life. Now he's dedicated to studying the
disorder, as a doctoral student at the University of Waterloo, with
hopes that the next generation of sufferers doesn't go through the
sheer hell he experienced while growing up.
Education about the disorder is the key. McKinlay, 25, found that
once people understood what he had they often looked past the symptoms
to get to know the person.
That education campaign starts this week with the National Tourette
Syndrome Awareness week. With the help of high-profile people
like Neve Campbell, whose brother is a sufferer, the Tourette Syndrome
Foundation of Canada hopes to increase the understanding of the disorder.
Tourette Syndrome is a neurochemical disorder that is characterized
by involuntary motor and phonic tics with estimates that three percent
of the Canadian population is afflicted.
Most sufferers try to control their symptoms because of the reactions
they get from other people who don't understand the disorder.
But they soon find they are often fighting a losing battle.
McKinlay, a director of the Tourette Syndrome Foundation of Canada,
said it's best described as an itch you can't scratch.
You fight the impulse until you finally give in and feel a great sense
of relief wash over you. Tourette sufferers feel the same way
when the pressure builds up and they finally let go and allow their
bodies to tic or let out a yelp.
"It's just that constant rippling of awareness of skin and
needing to fix things and make it just right," he said. "When
I shake my head I get the same kind of relief you would get scratching
your arm."
Even worse is fighting that feeling. That leads to greater outbursts
and even uncontrolled rage in some people with Tourette Syndrome.
"If you try to avoid scratching your arm, the urge builds and builds
and builds until you kind of have a rebound effect where you make up
for lost time," said McKinlay. "Then you get a huge
explosion which undercuts the entire reason for you holding it in.
"No one remembers that you were quiet for 10 minutes, they just
remember that you're dismantling the room now."
McKinlay's
earliest memories of the disorder involved the involuntary constricting
of the muscles around his bladder on a long road trip from his hometown
of Ridgetown to Detroit. After stopping for the fourth washroom
break in a little less than an hour, his dad finally lost it and punished
him for something he had no control over.
McKinlay soon learned his behaviour was unacceptable, both in his family
and in his small close-knit community.
"From my parents perspective, they thought I was just trying to
get under their skin," said McKinlay. "They said, "Just
ignore it, we're not going to let him win."
It ultimately led to a confrontation. McKinlay learned it was
easier to control his tics then explain why he was doing them.
It would set up a pattern of how McKinlay's "outbursts"
were treated until he came to his epiphany just before entering university.
An understanding of what he had and some research he's done into
how to handle it have given him a better perspective on his battle.
"The more I understood how Tourette's works, the more I understood
myself," said McKinlay. "It was a real chance for me
to feel in control for once in my life."
