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.

4 comments:

  1. voxina281 on youtubeJuly 11, 2012 at 4:03 PM

    I have a service dog for my Tourette's! I had thought I was the only one. I got my SD last August (Almost a year now, wow, I can't believe I've had him this long already) I'm 17, high school senior, and he's a golden retriever, named Mack. My tics are extremely severe...doctors have gone so far as to recommend Deep Brain Stimulation as a treatment for me...but when I pursued that, I was told I couldn't have it until I was 18. (Funny, that was back when I was 14, I'm only 6 months away from 18 and right now DBS doesn't seem all that appealing.)

    I've got something that works for me at the moment, though...Mack basically acts as a living walker (like the kind old people use) and a neurostimulator, and antidepressant, all in one.

    Here's how:

    As a trained mobility dog, he's used to letting me lean on him as a brace during dystonic foot and leg tics that otherwise can make me fall, make it quite painful to bear weight on my feet as the tiny bones and ligaments scream because they're not designed to twist into knots and still bear full weight, or at best, are an enormous irritation because I can barely walk with dystonic tics, just staying upright, balancing, is a struggle. I use Mack's shoulders like a cane (I have a cane too, but that in itself poses a problem, because I drop it during arm tics, hit myself with it, and am entirely too clumsy to use one properly)

    The neurostimulator analogy:

    he's trained to lie on top of me on command, and, being a 75 lb pup, his body weight produces deep pressure. The stimulation of deep pressure greatly reduces my tics (although that wasn't always so, when I first got him, it took 20 minutes for the deep pressure to end an episode, but through conditioning, a neuropsychological principle used to describe the way the body/brain learns to react to a repeated stimulus, the effects of him lying on me have changed to a near-instantaneous tic reduction. It even helps my vocal tics, although the main reason I use deep pressure from him is the way it can stop an attack of severe motor tics, which otherwise land me in a wheelchair, exhausted and dependent on others to push me and do everything else for me, until the attack ends on its own, which can be up to 5 hours later.)

    And how he helps my anxiety:

    when you go somewhere with an enormous, fluffy, puppy-looking golden, people notice. They stare, wave, randomly walk up and ask to pet, and give compliments like crazy. Contrast this to when I go somewhere without him, conscious of every person's gaze, terrified they'll say something to me about the twitching, chirping, humming, barking, swearing, posturing.... With Mack, it's just so much easier....he makes me not only physically able, but happy.

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    1. I am so glad you commented! I was beginning to think I was the only one too! :)

      Every task you just described is what they are training my dog to do. I found out a few weeks ago about my dog; his name is Owen and he is a *huge* English Labrador; he weighs 85 pounds and is also being trained to lie on top of me on command or automatically when I fall down. He'll also do "paws up" where he puts his front paws in my lap and weights my legs down and he'll "visit" where he rests his chin on my legs.

      He is also being trained as a mobility dog; I too, have a lot of dystonic leg tics and I have a lot of balance problems. I twist my knees around, walk on the joints in my toes by bending my toes under my foot, walk on the outside of my foot which wrenches my ankle, and I have a lot of leg spasms that have tightened my hamstrings an abnormal amount.

      Do you use a mobility harness? They are training Owen to one, so it will be very similar to a "mobile walker". I have never had to use a cane or a wheelchair (thankfully), and I'm hoping that Owen can help keep me out of one.

      They haven't suggested DBS for me yet, but that's partially because my neurologist doesn't know the extent of how severe my tics are. I've bounced around to a lot of doctors and have never had much luck with any of them. I'm thankful that this last doctor acknowledges that there are no more medications left to try and is okay with my decision to not be medicated. I agree though, I would not consider DBS while I am still able to drive, work, and go to class. If, I at some point end up on disability because I can't do those things, I might revisit the option. But I'm not keen on somebody fishing around in my brain. :)

      I can't *wait* to go places and have people notice my big yellow lab instead of my tics! I'm down to 2 months, 1 week, and 1 day until team training and I can't wait!

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    2. I just checked out your youtube account and saw your video of Mack; he is gorgeous!

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  2. Thanks! Yes, Mack wears a harness, although it's a wheelchair-pulling harness, so it's like a normal harness plus a soft streap of a handle used ofr wheelchair pulling, but it helps support me as well, even though it's not made for that.

    Gosh, you and me, sound a lot alike! Do you have a Facebook? You can join Tic Talk on there, it's a support group that I'm part of (a large support group!) and from there we could 'friend' each other if you want...I just don't want to put my real full name on the web, yknow.
    KC/Voxina &Mack

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