After
years of believing that he was not normal, Duncan McKinlay is now researching
the same disorder that nearly abolished his self-worth as a child and
teenager.
Duncan,
who grew up and attended school in Ridgetown, is just completing an
applied masters degree in educational psychology at the University of
Waterloo. The focus of McKinlay's research for his thesis
paper is Tourette Syndrome, the disorder that he went undiagnosed with
for 19 years. Duncan will begin his Ph.D. work, with a similar
focus, at Waterloo in September.
Tourette
Syndrome is a neurological disorder that is characterized by motor or
vocal tics. It is also often associated with difficulties with
impulse control and obsessive-compulsive or attention deficit disorders.
Duncan
was not diagnosed with Tourette Syndrome until his first year of university
at McMaster where he was working on his undergraduate degree.
Upon first being diagnosed, Duncan says that he was full of emotions
including shock, anger, and grief, but the discovery quickly began to
make sense.
Growing
up, Duncan said he often considered suicide. He says, "I
derived no enjoyment out of life at all." He believes this
is because he thought he was abnormal in comparison to other children.
"I
had never heard about Tourette Syndrome before," says Duncan.
He only knew that he acted different sometimes. "I thought
my parents really hated it when they saw this part of me (the tics),
so I hid it," says McKinlay. "I exerted a tremendous
amount of energy trying to keep it in," he adds.
Uncontrollable
motor and vocal tics often make people with Tourette Syndrome feel completely
out of control. "One way to feel in control is to act out,"
says Duncan. This is why many people who suffer from Tourette
Syndrome also have behaviour problems. "They feel they are
walking through life in a minefield. It is frustrating to feel
out of control like that," says Duncan. "My parents
interpreted it as me trying to be a bratty kid," he adds of his
behaviour as a child.
In
Duncan's final year of high school he was reading a column in the
newspaper on Tourette Syndrome and it struck a cord with him.
He did some of his own research on the syndrome before finally going
to a neurologist for further tests. Finally, in November of his
first year of university Duncan was diagnosed with Tourette Syndrome.
After
personally dealing with Tourette Syndrome for a few more years, Duncan
became more involved with other people who had been diagnosed, especially
children. His interest in dealing with Tourettic children blossomed
when he became involved with an organization, similar to Big Brothers,
that pairs adults and children with disabilities.
While
working with the organization called "Extend-A-Family" Duncan
was paired with a Tourettic child. "The change I saw in him
over the few years I worked with him was remarkable," says Duncan.
"It focused me and made me realize that I had something to contribute,"
he adds. Soon Duncan was giving presentations and lectures to
parents about Tourette Syndrome and his own experiences with the disorder.
After
Duncan completed his undergraduate studies at McMaster he entered the
Masters program at Waterloo where a major part of his research revolved
around the way in which children with Tourette Syndrome perceive themselves.
In May of 1997 Duncan finally
became involved in the Tourette Syndrome Foundation of Canada.
"To my surprise they had already heard about me," says Duncan.
Within
a month Duncan joined the Foundation in Waterloo for their annual convention.
At that convention, he received the Richard Stein Memorial Award
for making an outstanding difference in the quality of life for people
with Tourette Syndrome. Many of his peers also nominated Duncan
to sit on the Board of Directors of the Foundation. Although Duncan
is not sitting on the board this term, he hopes to do so in the future.
Since
starting his research on Tourette Syndrome, Duncan believes he has come
a long way as a Tourette Syndrome sufferer. "I would have
never thought I'd be at this point. I am proud of myself for
doing this," he says. "I've changed so much.
I'm a very social person now. I just didn't have the knack
or confidence for talking to people before."
Duncan
hopes to eventually open his own practice in educational psychology.
"One of the advantages to having Tourette Syndrome is that I've
done this all my life. I've studied all my life to help these
kids," he says. Duncan wants to help children find "long-term"
strategies, instead of medication, to cope with their situations.
"Many of these kids are brilliant, but no one realizes it,"
he says. Duncan points to Beethoven as one brilliant person who
was Tourettic.
In
Duncan's own life he says that he has learned to deal with his disorder
to the point that it no longer invades his life. He has now accepted
it as an integral part of his life. "Now, I would be much
more thrown off if I woke up and didn't have it."
Part
of the acceptance process for Duncan has also been to accept and understand
how others react to him. "I can walk down the street and
tic and have a woman look at me and pull her child closer. But I understand
why she has done that now."
