“We Fear What We Don’t Understand”
In November 2009 I met my now partner Stephane who was diagnosed with Tourette’s Syndrome when he was 6 years old.. Stephane and I had a deep and special connection that many of my family and friends did not understand or approve of. His Tourette’s was never an issue for me and but it affected our life and has led to a number of very difficult and uncomfortable situations that has put a lot of pressure on our relationship.
Over the yeas I have found myself in the middle of people’s negative reactions to Stephane which has caused me a lot of stress, anxiety and anger. After countless invitations to parties and other events where I was invited and Stephane was not I realized that the “fear” and “discomfort” with Stephane’s behaviours (related to Tourette’s) were being unfairly misunderstood and judged.
Without placing blame I clearly understood how ignorance breeds fear and in the present of fear “love” isn’t there to wrap it’s caring arms around those who are suffering. In 2014 I’ve decided to commitment myself to spreading some love and light onto a part of Stephane that I have grown to love, accept and celebrate- this is called Tourette’s Syndrome.
This first article is written to educate and inform readers about Tourette’s with future articles planned to continue bridging the gap between fear and understanding.
What is Tourette syndrome?
Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.The early symptoms of TS are typically noticed first in childhood, with the average onset between the ages of 3 and 9 years.
TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics.
Although TS can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.
What are the symptoms?
Tics are classified as either simple or complex. Simple motor tics are sudden, brief, repetitive movements that involve a limited number of muscle groups. Some of the more common simple tics include eye blinking and other eye movements, facial grimacing, shoulder shrugging, and head or shoulder jerking. Simple vocalizations might include repetitive throat-clearing,sniffing, or grunting sounds.
Complex tics are distinct, coordinated patterns of movements involving several muscle groups. Complex motor tics might include facial grimacing combined with a head twist and a shoulder shrug.
Other complex motor tics may actually appear purposeful, including sniffing or touching objects, hopping, jumping, bending, or twisting. Simple vocal tics may include throat-clearing, sniffing/snorting, grunting, or barking. More complex vocal tics include words or phrases.
Perhaps the most dramatic and disabling tics include motor movements that result in self-harm such as punching oneself in the face or vocal tics including coprolalia (uttering socially inappropriate words such as swearing) or echolalia (repeating the words or phrases of others). However, coprolalia is only present in a small number (10 to 15 percent) of individuals with TS. Some tics are preceded by an urge or sensation in the affected muscle group, commonly called a premonitory urge. Some with TS will describe a need to complete a tic in a certain way or a certain number of times in order to relieve the urge or decrease the sensation.Tics are often worse with excitement or anxiety and better during calm, focused activities. Certain physical experiences can trigger or worsen tics, for example tight collars may trigger neck tics, or hearing another person sniff or throat-clear may trigger similar sounds. Tics do not go away during sleep but are often significantly diminished.
We are all still learning about Tourettes Syndrome each and every day. As with all health conditions it is important to keep in mind that each person with Tourette’s will have varying behaviours and intensity of their symptoms.
Help spread more love and light and share this blog article to others so we can shed more awareness, insight and compassion on this often misunderstood disability.