Saturday
August 3, 2002: As a boy growing up in Ridgetown, Duncan McKinlay
Ph.D., remembers the first time he knew he was different.
He
was on a road trip with his father and friends when he felt an involuntary
abdominal muscle clenching, a feeling he mistook for having to go to
the washroom. He asked for the van to stop countless times. Eventually,
his repeated requests for bathroom stops were seen as "attention
getting" behaviour.
"I
realized that something was going on with me that others didn't understand,"
he said in a telephone interview with The Observer.
What
was going on was Tourette Syndrome and the involuntary muscle clenching
was a tic associated with the behaviour.
McKinlay
has been a guest speaker at many hospitals, universities and school
boards and has conducted over 150 workshops, seminars and in-services
for organizations and families dealing with Tourette Syndrome.
Various
media, including the Discovery Channel and The Montel
Williams show, have covered McKinlay and his work. Recently a documentary
on McKinlay was aired on television.
He
will bring his message to Sarnia this fall.
Tourette
Syndrome is an inherited, neurological disorder characterized by multiple
involuntary movements and uncontrollable vocalizations called "tics"
that come and go over years.
McKinlay
received his bachelors with honours in psychology at McMaster
University. He obtained both his applied masters in educational
psychology and his doctorate in psychology special programs at the University
of Waterloo.
He
is currently working as an intern at Bloorview
MacMillan Children's Centre in Toronto and plans to register as
a psychologist.
His
helping others with Tourette Syndrome makes him feel good, he says,
and he's interested in preventing others from going through the "hell"
he endured prior to his diagnosis. He compares the syndrome to "a
bad little kid running around in your head looking for something to
do."
McKinlay
realized he wanted to help others when he met a family from Hamilton
during his involvement with the Extend a Family program, a charitable
organization that matches volunteers with children and teens with physical
or developmental disabilities. He was matched with a boy with Tourette
Syndrome.
This
was the first time he had ever met someone else with Tourette.
"The
changes I saw him make were quicker and at a younger age than when I
made them. This made me feel very good...to be able to circumvent the
hell I went through," he said.
The
worst enemy for someone with Tourette's Syndrome is ignorance, said
the Ridgetown native. His aim in coming to Sarnia is to educate and
promote a positive mindframe about the syndrome. He advocates considering
the syndrome to be just one facet of a personality, not the whole being.
There
are also a few misconceptions he wants to dispel. One is that the disorder
is a "swearing disease." Although there are some who suffer
from coprolalia -- the involuntary utterances of obscene or inappropriate
statements or words -- he calls this component a "media friendly"
tic.
Fewer
than one third of people with Tourette suffer from coprolalia, he says.
The
media also focuses on individuals with "severe forms" of Tourette
Syndrome. Although he admits his symptoms are "pronounced,"
the vast majority of people with Tourette's have few subtle symptoms.
It's
a growing concern, he says. Although more people are being diagnosed
with it, it doesn't mean more people have it, he adds. In fact, it's
estimated that one per cent of the population are affected.
Tics,
he said, are the least of the problems for Tourette Syndrome sufferers.
Many have one or more additional problems which may include obsessions,
compulsions, Attention Deficit Disorder with or without hyperactivity,
or learning disabilities.
To
date, McKinlay has conducted about 170 presentations on Tourette Syndrome.
Eventually,
he would like to operate a Life's a Twitch clinic and work with children
affected by Tourette Syndrome.
He
currently is a director of the Tourette Syndrome Foundation of Canada
and sits on this organization's Professional Advisory Board.
He
also operates his own Website -- http://www.lifesatwitch.com.
The
Tourette Syndrome Foundation of Canada will also be at the presentation
in Sarnia this fall.
McKinlay
coming to Sarnia
Kathy
Maczko first saw Duncan McKinlay, Ph.D. when he did a presentation on
Tourette Syndrome in Chatham.
"I
was so taken by him," recalls the social worker in clinical services
at St. Clair Child and Youth Services. "He had such a hopeful message."
Although
she didn't have any clients at that time with Tourette Syndrome, she
was dealing with children affected by associated disorders like Attention
Deficit Disorder.
Maczko
appreciated the fact that McKinlay's main message to Tourette Syndrome
sufferers is to "accept that's who you are and make the best of
it."
She
recalls that one little girl in the audience hugged McKinlay at the
end of his presentation.
McKinlay
will speak in Sarnia on Friday Sept. 27 from 9 a.m. to 4:30 p.m. at
the Drawbridge Inn. The presentation is open to the public, professionals,
teachers, parents and teens.
Tickets
cost $50. and this includes a light continental breakfast and lunch.
To
register call the St. Clair Child and Youth Services and ask for Kathy
Maczko or Gloria Dunlap at 337-3701.
