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Retired

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WHAT’S IN A NAME? “LEAKY BRAKES” PRESENTATION
BY DR. B. DUNCAN MCKINLAY


article by L Zuker

Please note that Cognitive Behavioural Therapy is not recommended by Dr B. Duncan McKinlay, the Tourette Syndrome Foundation of Canada, or the TS Ottawa Chapter, and you should consult with a trained medical professional before considering or attempting CBT.

The following article contains information from the presentation “Leaky Brakes: What they are. What they AREN’T.” by psychologist Dr. B. Duncan McKinlay, Ph.D., C.Psych. (Clinic Lead, The Brake Shop service for Tourette Syndrome & Associated Disorders, Child and Parent Resource Institute, Ministry of Children and Youth Services, London, Ontario), which he gave at the Tourette Syndrome Foundation of Canada International Symposium and National Conference, in September, 2006.

In the Beginning – Fear and Confusion: Many years ago, at a meeting of our Chapter, my mom, then-president, sheepishly and courageously asked a question about an element of TS that few were willing to acknowledge, let alone discuss. “Who has holes in their walls?” Marcia Zuker asked. Slowly, one by one, the hands of mother and fathers went up around the room. At the same time, at other Chapter meetings across Canada, similarly courageous members were starting similar conversations. We didn’t know exactly what to make of it, and for lack of a better name, we called it “rage”. Of course, not all people with TS have this symptom, but those of us that did were somewhat relieved. Giving it our own made-up name, we were then able to start to discuss one of the worst symptoms of TS, one that caused fear to parents and horrible guilt to the people with TS themselves.

Like many other people with TS in Canada and around the world, I longed to understand why a simple comment from one of my parents, my sister, or even a friend, would “trigger” a shockingly sudden “rage attack”, where I would put holes in walls, throw breakable dishes, or something similar. The person who made the comment, despite not being attacked personally, was nevertheless shocked and scared, as anyone would be. And I would be lost to myself, like in a nightmare; all those with TS know what it’s like to not have control of their own bodies, but this was worse. I was a kid who tried to avoid stepping on ants and killing mosquitoes, but once in a rage attack I threw a bowl into the kitchen sink which exploded less than a foot from my mother’s face (thank goodness, she was not physically hurt). The rage attacks then stop as suddenly as they start, and the guilt felt by the people with TS is overwhelming. I was always wracked with a guilt which made Edgar Allan Poe’s “The Tell-Tale Heart” seem mild. Then as the guilt-ridden person with TS apologizes profusely, often in tears so thick it’s hard to speak, it becomes obvious to even the strictest parents or most unforgiving of friends, that the rage attack was as involuntary as a tic. People with TS who suffer from this symptom can usually only remember bits and pieces of what they just did, and it’s very vague, like trying to remember a dream a week later. Worst of all, we didn’t really understand why these rage attacks happened, or what to do about them.

The Good News – A Name: It was all well and good for people with TS and their families to come up with the name “rage” and start to discuss these “rage attacks”. People with TS may understand it better than medical professionals, but when it comesto what to do about TS, we need the help of all the wonderful medical professionals who work with the Tourette Syndrome Foundation of Canada and other national TS organizations around the world.

Now, finally, “rage” has an official name: Intermittent Explosive Disorder, or IED for short. And another symptom of TS, whereby some people with TS have a particular problem with any authority figure, is now called Oppositional Defiant Disorder, or ODD for short.

What’s in a name? I hate to disagree with Shakespeare, but in this case, a lot, because it’s only with an official medical name that something can be clearly identified and understood. And who could understand TS better then a medical professional who also has TS himself, like psychologist Dr. B. Duncan McKinlay, affectionately known as “Dr Dunc”?

The Great News – A Treatment: Sure it’s great that IED and ODD finally have official medical names, but how does that help us who have to live with or deal with one or both of them? Medical professionals give official names to things to identify and understand them in order to then propose treatments for them. Plastering up the walls is not enough; my family and I want to understand these and want me to get treatment to lessen and better-control the attacks.

Dr McKinlay gave his presentation to educators, in a way that could really put things in perspective for them. He said that having IED or ODD, just like other symptoms of TS, and other associated disorders like Attention Deficit Disorder, Obsessive Compulsive Disorder, and Anxiety, are like having leaky breaks. These neurological disorders all cause a lack of cognitive control and the inability to regulate oneself. He said all human beings have an ongoing struggle of inhibition, and with an imperfectly designed brain, which is like a “reptilian weenie wrapped in a cortical bun” we all try to apply brakes over many different things: movements, sounds, actions, attention, senses, and thoughts.

What happens if the brakes break? Dr McKinlay asked these teachers, if you’re driving in your car, and your brakes have a leak, would it help to yell at your brakes? Of course not; yelling and screaming and grounding your brakes, or sending them to the principal’s office, is not going to help. And it’s not the brakes’ fault they’re leaking; it’s just how they are.

The right approach is to take the brakes to a car mechanic to get them fixed. Medical professionals are mechanics for the human machine, including the body and mind. Since IED and ODD are symptoms of TS, medications or other treatments which lessen tics may also lessen ODD and IED attacks. But even better, there is a treatment which can be specifically targeted to IED and ODD.

Cognitive Behavioural Therapy, called CBT for short, can be used to specifically address IED and/or ODD. CBT is described in the article above about Dr Epstein’s presentation. Again, CBT is a treatment, not a cure, and like medications, CBT will work differently for different people, and should only be attempted under the supervision of a trained medical professional.

IED and ODD – They’re Not the Boss of Me:
Now that I know what they are, I know that I have IED but not ODD (at least at present), and that’s the first step for me to deal with my own leaky brakes. I know I speak for many others when I express my sincere thanks to all the medical professionals who have finally helped us tackle what were once two of the scariest and most misunderstood symptoms of TS; medical professionals like Dr McKinlay (whose website http://www.lifesatwitch.com is one of the best resources available, and now features rebuttals to deal with teasing kids and adults).

Rage no more, it is called IED, and there is a treatment called CBT. What’s in a name? IED doesn’t scare me anymore, it doesn’t control me anymore, and when it comes to my own body and mind, I am the boss of me.

Lawrence Zuker, President of the Ottawa Chapter of the Tourette Syndrome Foundation of Canada has written this article based on a presentation at the Tourette Syndrome Foundation of Canada’s National Conference in Edmonton, Alberta, September 2006
 

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