Monday, April 16, 2012

Fund-A-Dog Weekend

As many of you know – who am I kidding – as all 20 of you know who read my blog know, this past weekend was the Fund-A-Dog Dinner and Fundraising Concert. Through donations at the event, ticket sales, raffle tickets, the bake sale, the silent auction and from donations from people who could not attend we raised…



The weekend kicked off with a very personal search at the airport as I tried to fly home. I hate flying. I have never liked it, but when you throw Tourette’s into the mix, it’s unbearable. Simply setting foot in the airport sets me off, even if I’m picking somebody up and I’m not going anywhere near security or an airplane, I start ticcing. It’s a great Pavlovian response. Not. I know what I look like when I’m ticcing; I’m not oblivious. I know that the TSA is supposed to look for suspicious looking individuals; that is their job. However, when I’m stuck in a very crowded security line for 30 minutes before it’s even my turn to be screened, I have no more control over my body. I was barely in the line when an agent asked me if I was okay; he got the standard response, “I’m fine. I have Tourette’s.” He goes, “Oh,” and talks to his other TSA friend observing the same line, and then goes right back to his spot. Foolishly, I thought he might be informing the other agent of what I had said so that he would also understand that I have a disability. But alas, this was not the case. The other agent too, asked me if I was okay when I got closer to the scanning point, and again, he got the same answer. I stood still for my requisite 10 seconds in the body scanner, or as still as I ever get, and then waited for them to clear me. Imagine my surprise when I found out I was the lucky recipient of the chance for the TSA to repack my bags and to frisk me.

It was humiliating. I have a disability; I can’t control my body anymore than a neurotypical person can control a cough or a sneeze. Even though both agents had been informed of my disability, they felt as though I was suspicious enough to warrant a search. Every article of clothing I had packed was taken out, unfolded, and examined. Every piece of electronics I had was swabbed for explosive materials. My books were both turned upside down and thumbed through. Everything was unpacked and laid out on the table. Then, to add insult to injury, I was the recipient of an all-to-personal body search, and then the gloves used on me were swabbed as well. Then entire time I was ticcing to the point of extreme pain while the agents pretended I was not there or asked me benign questions. All I wanted to ask them was “Why me?” Why was I selected to be screened so “thoroughly”. I know what I look like when I tic, but I also know that I dress conservatively, I don’t wear makeup or jewelry, nothing in my bag would have triggered any sort of an alarm. I’m about as inconspicuous as a person could get when it comes to looks. Then only thing that sets me apart from other people is the tics. Which leads me to believe that that was the only reason I was pulled aside.

Of course, I wasn’t stupid enough to actually ask them. By the time they were finished searching my worldly possessions, I had 10 minutes to get from security to my gate and I was the last person on the flight. I know that the TSA has the right to screen anybody and everybody they chose to; and I guess I could have been lying about having Tourette’s as far as they were concerned. But really, wouldn’t a drug mule have thought of a better excuse??

After all of that fun, the weekend went off without any problems.  The dinner was very successful; the choir sounded great, we sold lots of raffle tickets, and the dinner was great!  I was really excited about getting the chance to share my experiences with that many people and to hopefully spread awareness about Tourette's.  Jump to access my speech from the weekend.

A tic-free moment during my speech :)

When I was 15-years-old, I was diagnosed with Tourette Syndrome. Tourette Syndrome is a neurological disorder that causes involuntary movements and vocalizations called tics. I am what is called 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. To date I have attempted 7 different medications to gain control over my body; 2 anti-hypertensives, 2 anti-psychotics, 2 anti-convulsants, and 1 anti-anxiety medication. I have taken homeopathic remedies I found on the Internet; I have tried acupuncture and most recently chiropractic care. Nothing has reduced my tics. In October 2011, I started under the care of a pediatric neurologist in Seattle who specializes in Tourette Syndrome. This last visit he told me that there are no treatment options left that I have not tried.

One of the most difficult things about life with Tourette Syndrome 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 tics 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 very difficult. People with Tourette Syndrome are heavily stereotyped against and tend to draw a lot of – negative – attention to themselves. Professors at Gonzaga have asked me if I am going to swear in their class. Many people have told me that I am lucky because having Tourette’s gives me an excuse to swear in public or hit people. Only 1 in 1,000 people are diagnosed with Tourette’s. Of those 1 in 1,000, 1 of every 10 has what is called coprolalia – a verbal tic that makes you say inappropriate things. That is approximately 0.01% of the population that has the “swearing tic”. Why then is that all anybody thinks of when I say the word “Tourette’s”? I have lived with coprolalia; I assure you there is nothing funny about being afraid of dropping the “f-bomb” while you are in a movie or in class. I would never pretend to have coprolalia just to get away with swearing, the same way I would never pretend to have any other disability.

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, which is repeating things that I say so that I sound like I have a severe stutter, and what is called the “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 nerves in my neck, I am always bruised on my extremities, and I frequently induce headaches and migraines due to the constant ticcing in my neck and upper body. What my service dog will do is two-fold. First, the dog will help with the anxiety component related to my Tourette Syndrome. And second, it will help with the physical aspects. But to explain what the dog will do, I first have to really dig into what it feels like to be a Touretter. Explaining Tourette's to a non-Touretter is very difficult, so bear with me.

The anxiety component is very central to my life as a Touretter. Many people with Tourette's also carry an anxiety disorder diagnosis; as do I. Over the last 6-plus years it has ranged from mild to very severe. For whatever reason, when people with Tourette's experience any emotion in excess, their tics increase. So if I am angry, upset, or even excited, my tics will be much worse and much more noticeable. However, my tics don’t function as a mood ring; just because somebody notices increased ticcing doesn’t mean I am upset or overtired. Sometimes it can simply be that I’m very relaxed and not worried about blocking my tics, or it could be that I’m excited about something, or it could be for no reason at all. In addition to emotions controlling my tics, whenever I get anxious my tics get worse. There is a lot of anxiety wrapped up in having Tourette's Syndrome; I never sleep enough and I have to be hyper-vigilant. I am always aware of where my body is and what it is doing. I have to be. When I am really tired or my brain is preoccupied with something else (like being upset or anxious) I can't keep tabs on where my arms and legs and head are and because I'm not as aware, the tics will sneak in unannounced. If I can keep tabs on where everything is, as soon as I get the “tic urge”, I can squash it down. Typically I do this with a combination of mental effort and by physically restraining my body parts, by crossing my arms, sitting on my hands, or twisting my legs or arms up in a blanket. The mental part is what is hard to explain to someone who doesn't live it. Basically, it is like having a very thin net cast around my body at all times. I constantly have to check that everything is inside the "net" and that it doesn't have any holes – tic urges. I always have this mental block up; it is why I am delayed in answering questions in conversations and I have difficulty doing things fluently at times. Because some part of my brain, big or small, is always worried about knowing where I am in space and is preoccupied with trying to block a tic. If, a tic escapes (either because I'm tired or because the urge is too much to ignore), one of two things happens. If I am at home or I am with people I know and am comfortable with, I tic and then it goes away. If I've been suppressing for a long time, the tic might be really bad, but as long as I am not in a socially inappropriate situation, that is normally the end with it. However, if I am somewhere where ticcing is "inappropriate" for whatever reason, like the movies, at a restaurant, or in a class, my anxiety automatically spikes. It is a knee-jerk reaction that I have no control over. This is due to years of having been judged and stereotyped by people because of my tics, and because I know the tic cycle that I can slip into. It is very easy for my body to start ticcing and not stop for 10 minutes or longer. That may not sound like a lot of time, but try shaking your head "no" as hard as you possibly can and see how long you last. Now add in clearing your throat until you lose your voice, jumping while you head bang, and tremoring your hands. 10 minutes can feel like an eternity and then some. Once I start ticcing, the anxiety automatically kicks in. Once I become more anxious, the tics get worse, and on and on and on. The tic attack has to run it's course, there have been very few instances where I have been able to get control once this starts to happen. My thoughts become so preoccupied with what my body is doing, how much pain I'm in, and how much I wish it would stop, that the anxiety increases and I become incapable of stopping the tics.
The mental drain of having to be constantly aware of every body part and trying to “block” tics so that this cycle does not occur, greatly outweighs the benefit of going out, and so I tend to stay close to home and only go places I feel comfortable or places I have to go, like school or work.

This is where the dog comes in. Dogs naturally reduce anxiety; they help lower blood pressure and help decrease stress. So why don’t I just get a dog as a pet? Why am I willing spend the equivalent of a college tuition on a dog? Because this anxiety cycle happens anywhere and everywhere. In fact, I am much more likely to start this anxiety-tic cycle out in public somewhere than at home. At home, it doesn't matter what I do; I'm not bothering anybody but myself. But if I'm on an airplane or in a movie theater sitting next to somebody, I can't afford to lose control. It's very difficult to explain to somebody, even people who I know, why I can look completely normal one minute and why I'm hitting them the next. There is nothing purposeful about it, it's because I lose control of my arm and it happens to tic into the person next to me. But that's very difficult to explain, especially if I am in the midst of a tic attack.

Just like they can train service dogs to intervene in panic attacks, they can train the dog to intervene in one of my "tic attacks". The dog will respond to physical cues - my tics - and will step in to draw my attention away from the tics. One reason the tics get so bad is because it rapidly and suddenly consumes my every thought. Having a dog who is trained to get my attention when I start ticcing will help that cycle not escalate as badly. It is the same theory that they apply when training dogs for people with severe anxiety or PTSD. The act of having to give the dog attention in that situation will draw my mind away from the tics and onto something else. The fact that I have a service dog, will decrease the anxiety. And the combination of these two things will give me the control I need to get my body back under control without hurting myself.

The dog will also help with the physical aspects of my tics. I have what are called dystonic tics. A dystonic tic is a sustained muscle contraction. It isn't as noticeable as a simple or complex tic because those involve lots of movement; a dystonic tic really doesn’t look that bad. It isn't just a muscle contraction though; it is a muscle contraction that twists and contorts my body in ways it was never meant to move. It involves every ounce of strength my muscles can exert and then some. And it can last much longer than a simple tic; I have had these tics come and go all day long with very little break in between tics.

Some of these are just painful; I twist my hands towards the outside of my body, turning my wrists. This hurts, but it doesn't really impact my functionality, unless I’m trying to eat. However, when my right foot turns perpendicular to my body while I am walking, this affects me a lot more. I have done this tic so often that my knee now pops in cold weather, and when this tic is occurring with great frequency, I have severe bone bruising on my kneecap that is visible on the skin. This tic makes walking virtually impossible and very painful. My toes also curl a lot; again, not so bad when I’m sitting down. Excruciating when I’m walking. Try walking with your toes curled under your feet and you’ll see what I mean. People ask me a lot why I’m limping or what is wrong, and it’s easier to let them assume I hurt myself than to tell what is actually happening. My hamstrings are unbearably tight resulting from all these tics and I have charlie-horses regularly. When tics like this happen, and I have many like this, I am only left with one functioning leg, and I have to drag the dysfunctional leg around until it decides to work again. The dog will be trained to balance, through the use of a mobility harness, in these situations, helping me to be mobile until the tic abates.
In addition to the dystonic tics, I also head bang. A lot. This isn't so bad when I'm sitting on the couch. Though, even then, it can become dangerous if I tic myself off the couch or into a piece of furniture. But, when I'm walking somewhere, head banging suddenly becomes highly dangerous. I have ticced so hard while standing up I have knocked myself to the ground, and then continued to tic on the floor where I run the risk of slamming my head repeatedly into the floor. Hopefully, this happens on carpet or around somebody who knows me and can get a blanket or pillow to cushion the tics. When I'm walking down stairs and this starts, I have to freeze wherever I am and if the tic doesn't go away quickly, I have to sit down on the steps for fear of falling down a flight of stairs. Because of this risk, I am always aware of where I am when I'm walking. I have to walk down stairs with my hands gripping the rail; I can't afford to risk walking down without holding the rail because I could start to tic at anytime. Even then, a lot of times I have to take elevators if I can't keep my body still enough to walk down stairs. When walking on flat surfaces, I like to walk next to walls or people I know. This way if I become unbalanced there is something, or someone, for me to touch and ground myself until the tic passes. However, I don't always get to walk where I want. This is where the dog will help out; it will be trained to balance in these situations so that I don't have to be constantly aware of where I am walking or afraid of going up and down stairs. Through the use of the mobility harness and the dog, I will be able to go anywhere without fear of losing my balance so badly I fall over and injure myself. The dog will help me stabilize and will help keep me safe until the tics pass.
In addition to all these things, the dog will do a lot more. The dog will automatically alert people to the fact that there is something different about me. Tourette Syndrome is a virtually invisible disability. Until I start ticcing, there is no way for anybody to know that there is anything different about me. In crowded spaces people come up right next to me and I have even had strangers get on the same escalator step as me in crowded malls. As soon as somebody I don't know gets within arms reach, my thoughts automatically go towards don't tic don’t tic don’t tic. It is a lot like having a very very bad itch; eventually it consumes every thought until it is all you can think about until you scratch the itch. Not having to be constantly aware of everybody around me and constantly having to keep track of where my body is would be liberating. A Heeling Allies service dog will be trained to provide what is called a buffer space by walking and standing a small distance away from me. This will discourage people from getting too close to me, even in crowded situations.

The dog will also be trained to do something called deep pressure. One of the things that can help stop a tic attack is receiving tactile feedback from where my body is. I can accomplish this by physically restraining the ticcing body part. It is difficult to explain what it feels like to not be spatially aware of your body, but it is similar to what individuals with Autism experience. When I start ticcing, sometimes I can't even figure out where my body is in space to try and get it to stop. Having the deep pressure to relax me will help to stop the tics because I won't have to be figuring out where my limbs are; the tactile feedback will automatically alert my brain. Receiving tactile feedback is an automatic process, for me to "find" my arms or legs and then stop the ticcing is a coping skill I have trained myself to do over a long period of time. And it doesn’t always work. Deep pressure is, in essence, recreating the feeling you get when you get a really hard hug. The dog will do this by literally sitting in my lap or lying on top of my body (if I happen to be on the floor) or, when I am standing, the dog will lean against my legs so that even in public I can get less conspicuous pressure. Not only that, but the dog will be trained to respond to severe tic attacks, like when I knock myself on the ground, and will give pressure automatically without requiring a verbal command which I am often incapable of giving if the tics are that severe. Having the dog giving the deep pressure will help me to gain control of my body and will distract my attention, diminishing the severity of tics in the moment. So why a service dog? Because Tourette Syndrome is a disability with no known cause and no cure. Because I have tried every viable medication option and then some. Because medication isn't a choice for me. I plan to stay on top of medical advances, but the sad truth is that Tourette Syndrome isn't the disability du jour. It's not pretty and we don't like to talk about it as a society. We would rather imagine Touretters as being people who scream obscenities in inappropriate situations while twitching, than view it as a real disability. There really isn't that much in the way of research and we don't know much about it. We don't know in which part of the brain it occurs; only that something in the brain has gone haywire. And if we don't know why it is happening, it is stupid to hope that we could find a cure or even a treatment option that works for everybody. What works for one ticcer may not work for another, and then with cases like mine, even after trying 7 different medications at varying dosages and after trying homeopathic remedies, sometimes nothing works. The dog will help mitigate the symptoms of my disability and will help me have a greater quality of life by allowing me more independence and freedom. It will help me integrate with the non-disabled population and the hope is that over time, my tics will decrease in severity and number by having the dog to diffuse situations that can escalate the severity and frequency of my tics.

Many of my dangerous and painful tics have arisen out of severe tic attacks; one day my hands are flying up of their own volition, and then the next day because I am ticcing so hard, I accidentally hit myself in the forehead. Then, before I know it, that has become it's own tic and what was once not that scary, is suddenly a tic causing severe pain. Having the dog to diffuse these bad tic attacks can help the progression of tics where they will start relatively mild and then escalate into something dangerous.

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 with honors, and I have been accepted to the graduate program at Gonzaga to receive my Masters in Special Education and my Board Certified Behavior Analyst certification simultaneously. 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.

I want to thank everyone here tonight from the bottom of my heart; there truly aren’t words to describe how much your support means to me. Just by being here tonight, you are helping me reach my fundraising goal. I want to thank the California High School choir for providing both tonight’s entertainment, but also for being the set-up and clean-up crew. In particular though, I want to thank Lucerne Mottaz; without her help and support this night would not and could not have taken place. I also want to remind you to enjoy the treats from the bake sale and to buy tickets for 50/50 raffle and for the handcrafted afghan that will be raffled off this evening.

When I first set out to raise money for a service dog; that was my primary, and only goal. Now however, it has turned into something a lot bigger than that. My goal is to spread awareness about Tourette Syndrome in the hopes that maybe one day there are children who can grow up with Tourette’s without having to live with the social stigma attached. That maybe in the future we will know what causes this neurological disability and how to treat it. You can help me by helping me to share my blog; if you have a facebook you can like my page to stay up to date on blog posts and you can click share to help the word get spread. The more people who read and see my story, the quicker I can raise the money to get my dog and the greater the awareness of Tourette Syndrome becomes. Thank you for your support.

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My new tattoo!  It's the awareness ribbon for Tourette Syndrome.  I'm thinking of adding the word "hope" somewhere along the ribbon along with a paw print once I get my service dog (and the tattoo heals and I forget how much it hurt) :)  Once it is healed up I'll post a better picture, right now it's not so pretty!

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