Saturday, December 31, 2011

Living With Tourette's

When I was 15-years-old, I was diagnosed with Tourette Syndrome.  Tourette’s is a neurological disorder, which causes involuntary movements and vocalizations called tics.  In addition to having Tourette Syndrome, I also have chronic migraines and anxiety.  I am what is termed a “full-blown Touretter”; I have  both simple and complex motor and vocal tics.  A simple tic is something like hand tremoring or clearing your throat; a complex tic looks much more purposeful, like jumping or saying words.  Over the years I have tried a range of medication, including anti-anxiety medications, blood pressure medications, and anti-convulsants, as well as trying acupuncture and homeopathic remedies.  In the last year I have begun to receive regular chiropractic care which has relieved some of the stress on my spine.  I have seen neurologists as well as movement-disorder specialists.  In October 2011, I started under the care of a pediatric neurologist in Seattle who specializes in Tourette Syndrome.  Unfortunately, I have received no relief from medications and the side-effects have been so severe I cannot stay on a medication for a prolonged period of time to see if it helps.
One of the hardest things about living with Tourette’s is that it is always changing.  Some tics I have done since the day I was diagnosed – like head banging and clearing my throat – and other things I will do for a short period of time and then stop.  Because I can never be sure what my body will do, it makes going out in public places very difficult.  People with Tourette Syndrome are heavily stereotyped against and tend to draw a lot of (negative) attention to themselves.  The mental drain of having to be constantly aware of every body part and trying to “block” tics greatly outweighs the benefit of going out, and so I tend to stay close to home and only go places I feel comfortable like school or work.
I have experienced tics in every single part of my body, including tremors all over my body, head banging, facial grimacing, clearing my throat, sniffing, snorting, “squeaking”, and I currently deal with two severe complex vocal tics: palalia (repeating things I say) and what is called a “blocking tic”, where I am physically incapable of speaking or making any utterances for a period of time.
As a result of my tics, I have broken a tooth, given myself a concussion, pinched a nerve in my neck, I am constantly bruised on my extremities, and I frequently induce headaches and migraines due to the constant ticcing in my head and neck.
Having a service dog would be life-changing.  Tourette Syndrome is an invisible disability.  I look completely normal and most people I interact with for short periods of time do not realize I have a disability.  Because I have a good deal of control over my tics, until I start ticcing, people do not realize that they should treat me any differently.  I have on multiple occasions hit people with swinging arms if they get too close to me and I have a tic “attack” I cannot control.  A service dog would be able to provide a buffer by standing and walking a small distance away from me to discourage strangers from coming up behind me.  When I am in crowded places I have to be 100% aware of where people are and where my body parts are in relation to strangers, to minimize the chance of having an “attack” where I tic into somebody else.  A service dog would decrease the need for this constant hyper-vigilance and would allow me to go out with friends without mentally wearing down.
I also have a multitude of lower body tics that make walking and moving very difficult.  I lose control over my right foot when walking, and it will swing out perpendicular to my body, becoming useless.  I also toe-walk, going so high up on my tippy-toes that I pitch forward, and I can become stuck places because my toes will curl upward, making it impossible to walk.  When these things happen, I can either stay where I am and wait the tic out (sometimes a matter of seconds and sometimes more than 10 minutes), or I can struggle to move, oftentimes dragging one leg after the other.  A Heeling Allies service dog will be trained to help me balance in these situations and will provide aid while walking when I need it.  Currently I am always cautious as to where I walk, standing near walls whenever possible to brace myself if I start to tic, and always walking down stairs with railings.  If I’m having a bad day, I cannot even go down stairs, and am forced to wait for elevators to go up or down a single flight of stairs.
Having the freedom a service dog would give me would be life-changing.  I am a senior in the Special Education major at Gonzaga University.  I am on track to graduate in May 2012 with honors, and plan to apply to the graduate program at Gonzaga to receive my Masters in Special Education.  My plan once I graduate is to teach at the Elementary level in self-contained special education classrooms with children with severe disabilities.  Having a dog who I could attend class with and eventually teach with would change my life.  Living with Tourette’s means I am always living at a higher level of stress and anxiety than most people; never knowing what I will do and how long a tic “attack” will last causes severe stress.  Because dogs naturally reduce anxiety and stress levels, going to school and eventually teaching with a dog would help me to moderate my stress and anxiety levels.  The hope is that having a service dog would reduce tic-related anxiety to a degree where my tics did not manifest as severely or for such lengthy periods of time, allowing me a greater quality of life and allowing me to be a more effective teacher.