Tourette's and Driving

    As I have mentioned in previous posts, Tourettes impacts every aspect of my existence. Combined with my co-morbid disorders, there's not a part of my life that isn't touched by this neurological enigma. Lately, but not for the first time, my driving skills and personal endurance are being tested. My tic cycle is in on an upward climb meaning my motor and vocals tics are taking a turn for the worse. To be more specific, when I climb into bed at night after a hard day's work, my body temporarily relaxes into the comfort of my own bed, my safe haven, before letting loose with a barrage of tics and unremitting premonitory urges that I was holding back whilst going about my work day at the hospital. Let me back up a little bit. I've recently begun a new career as a phlebotomist. I love my job. I'm busy all the time. It's fascinating because there's always something to learn, and I get to help people. I've entered a whole new environment which means getting used to a whole new audience to display my tics in front of. Talk about pressure! It's not as hard getting used to ticcing in front of my co-workers. At this point in my life, I'm fairly used to that and if anyone has a problem with it, they can either ask me questions (which I'm more than happy to answer) to educate themselves or they can mind their own business. The difficulty lies in expressing my tics in front of patients who are trusting me to skillfully insert a needle in their arm and withdraw blood with as little upset and discomfort to them as possible. My concern is not my adeptness at phlebotomy itself, but in encouraging confidence in my patients that they are in good hands and I will care for them to the best of my ability. I am still brainstorming on how to best deal with this personal issue, but in the meantime I will simply continue to perform my duties to the best of my ability.
    Anyhoo, back to driving. The stress from any new experience can be tic inducing, let alone a career change. Believe me folks, this one has been a doozy. I'm full time which means a lot of driving to and from work. Add on any additional errands or appointments and you've got a recipe for tics galore. Lately, I've been getting these unrelenting urges to blur my vision or cross my eyes. This also happens while I'm driving which can be 
terribly stressful and disheartening. I start worrying whether I'll have to stop driving for a period of time until my tics subside, because the urge to complete the tic is like an alcoholic wanting that next drink or a smoker craving that next cigarette. Until it's completed just right the premonitory urge does not go away. Even once I feel as as if I've completed the action just so, the relief is only temporary. It can last anywhere from a couple of seconds to several minutes.
    When these tics invade my activities, in this case my driving, I'm forced to slow down waaay below the speed limit and/or pull over. Unfortunately, there isn't always a place to do so, so I'm forced to press on and take it one step at a time. Other tics that accompany me while navigating the roads include: the urge to press down on the pedals as hard as I possibly can, the need to press or pound on the steering wheel, and of course my usual head snapping/shoulder shrugging/bird calling tics that I encounter on a regular basis. The pedal pressing can sometimes be quelled by stomping or pressing my foot on the floor as hard as I can and red lights can be a tourettor's best friend, because one can press down on the break pedal and it's not going to hurt anything because that's what you're supposed to be doing in the first place. I just like to put a little more feeling into it. LOL
    Let me be clear, driving is a privilege and a huge responsibility, not just for those of us with disabilities, but for everyone. Although, we experience extra distractions while driving, as long as we know when to ask for help and be conscientious of when we should and should not get behind the wheel, there is no reason that someone with Tourette Syndrome cannot drive. Have there been times when I've had to put my license away from a while, yes, but that's when my family steps in a picks up where I had to leave off.

Dear Teacher, Mentor, or Employer:

Dear Teacher, Mentor, or Employer:
       My entire life you lot having been telling me how slow I am, that I need to "pick up the pace." Each time one of you came to me saying something like this, wanting to please you and ever wanting to improve personal performance, I have endeavored to observe and take to heart any little tips that will help me speed up my work. Let me tell you something, when a person has Tourette Syndrome, among other things, veering away from what has become my norm is always a challenge, especially when learning something new. More on that later.
       I remember the first time someone told me I was too slow and needed to "speed it up." It was art class in first grade. The second time was gym class that same year, because even though my knees were hurting me so badly that I could barely walk, let alone run, the so-called gym teacher didn't believe me and insisted that I complete my final mile long lap around the playgroud while the other children stood in line waiting for me to finish. Talk about humiliating. From there it was Girl Scouts, dance class, high school, and every single employer I've ever had.
       You think it's because I'm lazy or don't care very much about my job? Let me tell you that I am probably one of the hardest workers that will come through your doors. I am prepared to go above and beyond my duties. Yes, sometimes it does take me a little longer than your "average" person. Sometimes I ask a lot of questions because I'm a perfectionist and want to be sure I have it right. I am a methodical person who cares more about quality, than quantity and when you ask me to speed up, you are only jeapordizing my efficiency and my ability to produce good, thorough results.
       Having Tourette Syndrome makes me a high strung person. You think I'm lackidasical, while inside my nervous system is constantly running on "high" and the only way for me to keep it in check is to apply extreme focus to whatever task is put before me. You don't see the epileptic fashion in which my motor tics present themselves whenever I'm at home and am exhausted, stressed out, and/or just plain trying to relax. You don't hear the rain forest that is my vocal tics when I'm in the comfort of my own home and can finally release them without fear of scorn or rejection. You barely see the tip of the proverbial iceberg. In other words, it takes a lot of energy and focus to hold all that in and function out in the world and I'm doing the very best that I can.
       You think I like hearing everyone and their mother tell me that I'm too slow? Walk a day in my shoes, taking the everyday criticism that your average subordinate does and add in a constant reminder of the area that you have seemingly fallen short in your whole life and tell me how how that affects your self-esteem and your job performance. Let me know how long you continue to do a good job and, further more, take some pleasure in what you do. Not long... Pretty soon you began to feel smaller and smaller, because nothing you ever do will be good enough and you will never measure up.
       In closing, I want to do a good job. I want to do a great job. I want to accomplish my duties to the best of my ability and be able to go home at the end of the day feeling that I did just that. I'm bound to make a mistake now and then, but I want it to be because of simple human error, not because I was trying too hard to go beyond my capabilities in a failed attempt to keep up with a 'Now Society'.

P.S. Here is a link if you want to know more: Tourette Syndrome

Make Yourself At Home

    When we get visitors, one of the polite things we say to welcome them is, "Please, make yourself at home." It's a sweet, simple gesture that conveys to the guest that you are happy to have them in your home (your private space) and want them to feel comfortable. Although, having tics and experiencing them is the norm for us, a lot of times we still have to get used to them. We don't get to pick and choose which tics we do and don't get; or for how long we'll have to endure them
    I've encountered those who are uncomfortable with or irritated by my tics even after explanation. I suppose they deserve some credit for trying to hide their vexation. However, due to having a nervous system that's always in hyper drive and being a student of human nature anyway, I'm hardly oblivious to most people's feelings. Generally speaking, I am able to obtain a certain amount of objectivity in this area.
    Despite having heard about it all my life, for the first time in 26 years I developed a throat clearing tic. At first I found it embarrassing. I was not used to this sound coming out of my throat outside of the normal reasons for it. Now it was presenting numerous times a minute, often several times in a row. In addition to this, my throat was getting sore from doing it so often. I sometimes (notice the use of present tense) worry that people will think I've got some sort of bug and will make them sick too with all my throat clearing.
    Bearing all this in mind, everyone is susceptible to be startled by the unknown and I'm not faulting anyone for this, as I have experienced this phenomenon myself. I just have the advantage of being exposed to "the unknown" more than most and am therefore less phased by it. My point in sharing all this with you is not only to encourage you to explore and ask questions, but to  help you better understand not just people with Tourette's, but anyone who deals with a "startling" disability. As alien, unsettling, embarrassing, and/or painful it may be to someone watching on the outside, think how much more difficult it is for someone battling it on the inside. A little compassion and understanding can go a long way.

Tourette Conference 2016

Every two years the Tourette Association of America puts on a national conference in Arlington, Virginia for touretters and their families. For several reasons, it was touch and go for a while this time around as to whether or not I was going to get to attend. When I found out that not only was I going to get to go, but that my big sister was going to join me in the experience I was ecstatic. The itinerary for the conference sessions had been posted, our hotel was booked, and the TAA board was kind enough to grant me a scholarship to attend this year's conference. Not to mention, the keynote speaker was Brad Cohen, whom I consider a personal role model for me in the TS community and have long hoped to have the opportunity to meet.
    If you don't have Tourettes or any sort of isolating disorder you may not fully grasp the importance of the camaraderie one feels when being around one's own. I live in a small town where awareness and support is not readily available or in close proximity to me. So when I get to attend this conference it's like a breath of fresh air. I can be weird and ticcy and be at home with others like me who understand and aren't judging me for my tics. Over the past three conferences that I've gone to now, I've made new friends and reconnected with old ones. It's fun to catch up and talk about the tics and little mannerisms we have in common.
    One of the neat things I got to experience this year, being a three time veteran, was seeing the looks on people's faces and hearing the things they'd say about it being their first time to the conference. It made me remember my own first adventure at the Tourette's Conference and how exhilarating it was. I remember feeling so overwhelmed (in a good way) with meeting people like me for the first time,  hearing other people's stories, and meeting some wonderful people from what was then called the Tourette Syndrome Association. I made new friends and for the first time in my life, outside of my own  home, I could tic and not feel like a weirdo or the odd one out. I didn't have to worry that someone would think I was mad, begging for attention or being excluded from groups and activities because the people there understood and dealt with the same things I did and do.
    Let me stress that I love informing people about Tourette Syndrome. I strongly encourage people to ask questions. How else are they going to learn? But the looks, the stares, and the body language that so many think go unnoticed by someone in my position are sometimes more than one can bare. I know when someone is uncomfortable with me. I can all but see the wheels turning and the questions and/or comments churning in their minds and I know that many feel this way as well.
    When I go to the conference and I'm echoing a phrase, sound, or movement that someone else made I know they're not going to judge me or feel that I'm mocking them because they understand. That's the key word there folks: understand. If you never take the time to learn about something or someone and understand the "why" behind their actions or behavior you are sentencing yourself to a life of ignorance and worse yet, you are sentencing those people to a life of scrutiny and exclusion.
    In closing, I went to some very informative sessions. I can't stress enough the joy and comfort of being around my fellow touretters. To my delight, I did get to meet Mr. Cohen. He was just as I imagined him to be. I enjoyed his easy-going manner and his openness to talk about Tourette's and advocacy. I also appreciated him sharing his story with us. It's easy to feel alone with a disorder such as this and having people like Brad Cohen to look up to and feel that sense of connection with is important. Also, to be able to see the things that such people have accomplished can be a ray of hope for those of us who aren't always able to see the light at the end of the tunnel for one reason or another.

Pressures of Being An Adult

    As a child I couldn't really identify with this statement. It wasn't that I couldn't see the people who didn't accept me for who I am, I simply wouldn't. Now as an adult, it seems that I notice people's disapproval more and more, not to mention, the pressure I put on myself to be an upstanding, accomplished adult. I hide some of my tics around family members fearful of disapproval or misunderstanding. As I've mentioned in the past my immediate family has always been very supportive, but sometimes even around them I get self conscious, because "watching your back" is a hard thing to turn off. I hide many more in public these days. Part of this, I think, results in a change in the way I feel about myself. As humans change is only natural. I feel as if I've entered a new stage in my life and the pressure to do certain things and be a certain way have only increased.
    I recently started a new job and did not convey to my boss that I have Tourette Syndrome. Usually I do, but this time I want things to be different. A few days after I began working there we had a night where things were rather quiet and as you may or may not know, when it's quiet those of us with TS always feel the need to fill that silence with our vocal tics. The urge was so overwhelming that I wanted to curl up in a ball and hide. The next day I broke down in tears telling my mum and sister what had happened and how I felt about it. Every day, I'm worried that my tic cycle will get worse or my individual tics will be so terribly obvious that someone will take notice.
    This concerns me because I believe they will not want to give a promotion to someone who seems, in their eyes, to have a disability, that they will see it as a weakness. Also, I have experienced discrimination and humiliation in past jobs due to my tics.
    As always I'm experiencing new and different tics all the time. Just when I've adjusted to one, another one joins the club. I worry that when I tell people that my urge to throw my pen, phone, or other object onto the floor is just a tic, they won't believe me. They'll think I'm just making trouble. After all, I'm an adult and adults don't do things like that or make sounds that sound like the beginnings of temper tantrum which in reality is merely stress coming out in the form of a vocal tic.

Tourettes In Society

    Tourette Syndrome is an extremely visible and audible disorder. Whether I'm flinging my arms around, jerking my knees backwards, or screeching like an owl it's impossible to disguise as anything other than what it is. I've always been a reasonably uninhibited person; however, as I've gotten older and my tics have grown in severity and frequency I've had to become even less inhibited. It's a long, daily struggle for those of us with who deal with this disorder.
    I don't get this so much anymore, but when I was younger and would go into stores I would be having shaking tics. I would go past a cashier, a greeter, or someone else who works in the store and they would ask if I was cold (sometimes this would occur in the middle of summer). In the beginning, I would just sort of laugh, embarrassed and nod my head. Then I got a little bolder and would occasionally say, "No, it's a tic. I have Tourette's." This statement of course meant nothing to them and was usually met with awkward silence. Lastly, I came to the stage I'm in now where if someone presents me with such a question, I answer with simple, blanket 'no.'
    One of the things I'm learning these days about having TS is that less is more. Further explanation is not always needed or required. One of the perks of being an adult with TS, is that people, particularly those in authority, have less of an annoying habit of calling you out on your tics or asking you to stop. I can't tell you how many times my mum had to go to bat for me and tell someone too ignorant to ask what was wrong, that her daughter had Tourette Sydrome and couldn't help the screaming tic she was dealing with at the time.
    When my tics and/or my sensory processing is out of wack, (i.e. light, sound, etc.) periodically I am called to rely on some sort of aide whether it be noise-canceling headphones, indoor shaded glasses, or something more obvious such as a rollator. The rollator is something new that I've added to my repertoire of aides that assists in not only supporting my body when jarring tics emerge, but also when a "fainting" or falling tic occurs. These aides are invaluable at times, but using them does take some getting used to.
    Sometimes suppressing tics is something those of us with TS are called upon to do. This can be due to too much stimulus, a strange environment, or just feeling generally self conscious. Unfortunately, holding our tics in is not only extremely difficult and stressful, but allows for co-morbid disorders to come more to the forefront (See: Post on Co-Morbids). Also, when we finally do decide to let our tics go, it can be likened to the eruption of Mt. St. Helena leaving destruction and pain in its wake.
    My environment is ever changing, so it's not always easy to just let it go. Sometimes tics are held in subconsciously which can have detrimental consequences. A person with TS has to be creative in learning when and how to express a tic. It's a process and not an instinct that requires the understanding and cooperation of those around you. Learning to understand one's body and the messages that are being sent it a vital and never-ending process.

Tic Cycle Update

Hey! So, something a little bit different - a video! One of the reasons I decided to do this is I fee like so much of the time people don't actually get to see what Tourette's looks like. So, this is a way for me to mix it up a for you to get a better idea of what TS is like. Feel free to comment and let me know what you think!

Here's the link I promised: What Is It?

Laugh Out Loud

                               So what tics do you have???

                                        Note: I do not own this photo. Borrowed from http://tourettestoucan.tumblr.com/post/52585477270/so-what-are-your-tics


    Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc. but it can also be funny or silly. I've had people ask me this question soooo many times and I'm thinking: Where do I start? Do you want the manual? I love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.
    So the meme out there these days for all of us Touretters is Tourette's Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on "Memes only" in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I'm going to name a few moments of my own. If you don't have TS or don't know a whole lot about it, some of the memes may be confusing, so feel free to ask!
     I remember a time, not long after I was diagnosed, when I was lying on the couch having what's called a complex-motor tic. I was having a tic where my entire body was periodically jerking and shaking every which way. At one point I ticced so hard I fell off the couch laughing. Thinking back on it, the whole scene was kind of funny, but having those complex tics are not always fun, they can be downright aggravating and frustrating.
    In fact, I've had many moments where I break down and cry because my tics are so overwhelming and "in my face" that I don't feel like I can cope on my own. I hope that everyone out there has some sort of support group or confidante they can lean on and draw strength from when their own is waning. The important thing to remember is that those hard tic phases don't last and the cycle will calm down and change just like any other. Lastly, please remember one can always contact the Tourette Syndrome Association when at a loss for answers. This is why promoting awareness and understanding is so essential, so that in the future there will be more and more resources available to the TS population.

(I made this one myself) This has happened to me more times then I can count lol I used just automatically laugh and say , "Yeah!" but these days it's pretty much automatic to say no without any further explanation. lol

Happy Father's Day!!!

     It's rainy and chilly outside. Unusual weather for this time of year in the Northern Panhandle, but I don't mind. I've mentioned several times how my mum has been a great help to me throughout my years in dealing with Tourettes. I've talked about how she's supported me, guided me, taught me to stand up for myself, etc, but today I want to talk about my dad.
    Whatever mysterious gene that Tourette Syndrome comes on came from his side of the family, along with OCD. Several of the oddities that I've experienced over the years, he's gone through himself. Having TS can be very lonely when you're the only known one in the family who has it, so it's kind of cool when we find something else in common. Throughout my college career, as I've mentioned before, I've experienced some prejudices that I didn't know how to or couldn't deal with on my own. My dad has come to class with me when I felt like I couldn't be alone, and he's gone to bat for me when someone wouldn't give me the accomadations I needed or didn't seem to "get" that having Tourettes can be difficult and can sometimes make certain everyday activities hard to deal with such as: ticcing in public, standing or sitting still for long periods of time, being quiet, sensory processing, etc.
    My dad, my mum, and various other peoples have been responsible for the on-going process of learning to be comfortable with myself and my tics and being able to stand up for myself. I don't believe in being quiet or sitting on the sidelines while someone gives me a proverbial beating. I don't always know what to say, but, chances are, someone else does. The important thing to remember is each time someone sticks up for me and/or I stick up for myself, and promote Tourette Syndrome awareness, I've gained another notch in my belt of advocation. Being an advocate can be something as simple as telling someone you have Tourettes, because you're showing that you're not ashamed of who you are.
    I had one incident at a place of employment when I was a sophomore in college where a supervisor got upset with me for calling home because my tics were so bad that I couldn't be still for a second and I didn't know what to do. This was also during a time when I was less than okay with expressing my tics in public. When I tried to explain that I had obtained permission to call and that I had TS, he refused to listen and told me to go home. Try as I might, I couldn't hold back my tears. My mum who was on the phone this whole time listening to the exchange told my dad what was happening and within fifteen minutes he was up there speaking on my behalf to the man who had committed the transgression. If it hadn't been for my dad that day, I don't know what I would have done.
    In closing, I just want to remind everyone that everyone out there who has Tourette Syndrome or knows someone with does is covered under that American Disabilities Act. That means no one is allowed to discriminate against you because of your disability.

Here's The Deal

    Take it from someone who has been there. Seeing someone tic can often look/be funny, silly, unnerving, weird, etc. Sometimes I'm not even sure what to make of myself, especially if I'm dealing with new tics or a new set of tics. Every time I go out in public I play this mental game of battleship. How bad are my tics today? How much am I able to tic in front of people. Do I let people see my old tics, let alone new ones? What happens if I have a vocal tic? All this and OCD too??? It can be exhausting.
    People don't always know how to approach someone with Tourettes or what to do if they see a person ticcing and that's understandable. It's nothing to be ashamed of, because often I, and others like me, am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS?

1. When talking to someone with TS, don't be afraid to look at them when they're ticcing. You're having a conversation, so it's perfectly acceptable to make eye contact.
2. Don't be afraid to ask if you are genuinely curious. Say something like, "Excuse me, I couldn't help but notice, do you have Tourettes?"
3. Do NOT ask ask them to stop ticcing. We literally cannot help it.
4. Remember that not everyone with TS is going to start spouting profanities. -Only 10% do and even they aren't guaranteed
5. Someone with TS needs to be included in groups, not excluded or isolated because they're different. Make it clear that they're welcome.
6. People with TS are naturally tense for a number of reasons. Do what you can to make them feel at ease.
7. Don't single someone out who has TS by pitying them or continuously asking them if they're okay.
8. Everyone has problems or something they need help with. If someone with TS is asking for help or special consideration, assume it's because they really need it, not because they just want attention.
9. If you're friends with someone with TS, learn to be accustomed to their tics, rather than constantly being startled or disconcerted. Body language alone speaks volumes. If we constantly have to worry about how our tics are going to affect whomever we are with, it puts us in a defensive position that prohibits us from relaxing and being ourselves.
10. Learn to accept others as they are with all their unique differences and challenges. Being able to coexist with others in a peaceful and meaningful way is invaluable.

This picture is not my property.

Proud To Be Me

    In all walks of life there are many people who would have one conceal certain things about oneself in order to preserve some social fantasy that they keep in their head, some picture that they harbor of how people should and do view them. I have touched on this subject before, but my heart especially goes out to those who are made to feel ashamed of their disorder in one way or another. This doesn't just apply to those with Tourettes, but also those who have other medical issues that can be considered a social stigma. I'm not saying anyone has to broadcast their disorder or should be known by it, but, they should not have to feel as if they are an inconvenience.
    I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS - some of these I have shared with you.
    You may argue that learning of a person's disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence? When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one's disabilities. Therefore, it has no place in the family. To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your "TS self" and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.

HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!

    With my college graduation coming up in three days, this seemed like a good time to share a couple stories. Now, you may have noticed that I haven't posted for a week, but that's because I was getting ready for this week's post and of course GRADUATION. Yay! Going through college with Tourette Syndrome has definitely made for an interesting ride. All the hard work I have put into my college career has paid off, but it hasn't always been easy. I won't say it hasn't been without its rewards though.
    When I first started college, like most students, as freshman at West Liberty University I was living in the dorms just trying to acclimate to my new life. I had been going through a couple years of suppression where I had worked so hard to disguise my tics, that I couldn't tic if my life depended on it. This was all due to feeling humiliated at anyone seeing me tic, as many of them can be unsettling or distracting. It was as if that part of my brain had temporarily gone somewhat dormant to the point that if I did feel the need to tic, it felt alien and I almost couldn't. (I don't recommend this) So, the most I experienced were facial grimaces, crossing of the eyes, and scrunching up my facial muscles. I made a few friends, even met my first real boyfriend, and did pretty well in my classes.
    During my sophomore year, I had begun to dislike dorm life and wasn't doing as well in school as I needed or wanted to. I missed my family (pets included) and I didn't like being away from everything, so I began to explore the idea of switching schools. I knew this would mean a longer ride and with choosing Wheeling Jesuit I would become a commuter, an idea that I was actually kind of excited about. When I entered WJU in spring of 2010, things began to look up, but it was only the beginning of one of the biggest challenges of my life.
    In the spring of 2011, something got triggered in my brain and my tics came back in full force. It was was like I was that kid again who looked like they were constantly hyped up on sugar and caffeine. I began seeing a therapist to help me cope because ticcing in front of people, let alone in a small classroom, was no easier than it had been in high school. In March of 2012 I attended the National Tourette Syndrome Association conference in Arlington, VA. I met people of all ages who dealt with the same things I did. I wasn't alone in my TS anymore and that felt good. Long story short, I was inspired to do a TS Awareness Campaign for my undergrad senior project. It wasn't readily accepted, but I stuck to it and was met with success; even won a couple awards!
    It was a long, arduous process to be able to tic comfortably in public. I took baby steps and LOTS of them, but today I can tic just about anywhere and as soon as it's over I resume "normal" activity as if nothing happened. I've noticed it seems to make most people more comfortable to see that it doesn't bother me or at least doesn't appear to bother me. There are still times when I struggle to tic in public. I have to remind myself everyday (especially if someone looks at me weird or is obviously startled by my tics) that it's not about them, it doesn't matter what they think, and without that part of me, the TS part, I would be a totally different person then the one I am today. So, take it from a very soon to be college GRAD: "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." - Eleanor Roosevelt 
HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!

Way Back When.....

    When I was a little girl, I joined Girl Scouts (Brownies) in the first grade. I have always loved hiking, exploring, making crafts, etc. So, this was a good fit for me. It was only a couple years later that my tics became full blown and I was diagnosed with Tourette Syndrome. I had many motor tics, most of which consisted of shaking and jerking my upper body or my legs. Back then, however, my vocal tics were aplenty and became more frequent if I got excited. I would do the "girl-scream", talk in an escalated tone, squeak, whistle, and make bird noises. All of this seemed "normal" to me, but to my friends, it could be quite startling at times.
    I remember being on a weekend camping trip when I had just entered Juniors. It was cold and rainy and we slept in tents that were not entirely unexposed to the outdoors (which meant bugs). Every few minutes or seconds I would let loose with one of my vocal tics and a couple of the girls asked me to stop. I looked at them slightly confused as to why they would ask me such a thing. I was never a quiet person and, as I said, ticcing was a natural thing to me. One of my friends stepped forward and said, "She can't help it."
    "Yes, she can." Retorted one girl with her arms crossed. She wore her hair in a ponytail and seemed to speak for the others who had objected. "Yeah, why can't you stop?" snapped a girl in pigtails behind her.
    Glad to have someone on my side and wanting these girls to leave me alone, I finally spoke up. "It's a tic, I have Tourettes." I shrugged and launched into the 9 year old's version of what TS is.
    This was just one instance where I've encountered social insensitivity. There are always consequences to that kind of behavior. I'm not going to say it didn't sting or hurt, but over the years I've learned that many times when people say things like that it's due to a lack of knowledge or that thing in your brain that makes you think before you speak, i.e. discernment. The trick is to learn to ignore their comments and even encourage questions. That let's people know that you're okay with having TS, even though it can be a challenge. Also, it's important to learn to be comfortable in your own skin and ticcing in public, because if people don't accept you AND your Tourettes, they're probably not the kind of people you want to hang around anyway.

Common Concerns

    Happy Spring all! I've had the flu for the past couple days, but on the bright side, that gives me ample time for reading and such. So, I'm a member of this group on Facebook for high school and college students with TS. Someone posted a picture from Instagram naming various Tourettes Issues. I want to comment on these because they're some of the most common ones.

# 4: When people think you're rolling their eyes (or sticking your tongue out) at them.
    Okay, rolling your eyes isn't such a big deal, although it can get you into trouble. I've told a few teachers that just because they see me doing that doesn't mean I'm disrespecting them. However, sometimes this one can be so bad that I'm afraid I'll look like a weirdo if anyone sees me doing it. So I put my head down or turn away to express it. The second one can be down right embarrassing. Haha just talking about it makes me do it. I was in class the other day and had it and we weren't in a regular set-up. It was more like a round table. Awkward...
#6: To me, this one is kind of funny. It's interesting to watch the different reactions. Some people are surprised and curious; others get this abashed look on their face. Either way the shoe is on the other foot.
#13: I am convinced that Obsessive Compulsive Disorder just has to be tag-along to TS. (Note: International OCD Foundation info can be found in the link on the right.)
#15: Wondering if your future kids will have Tourette's. (50% chance of heredity)
To me, you have to have the mindset that they might and take confidence in knowing that you are the best person to help them through it. Also, no matter who you are, every family has something and there's always that chance that it might get passed on. One cannot let fear be the ruling factor.
#16: In my blog, Blanket Hug, about the weighted blanket I talk about bad tics being a hindrance to sleep. This is common because, not just people with TS, but people with nervous system disorders often have trouble winding down. One thing to remember is: you are never too old to have a bedtime ritual. 3-4 hours before bed I dim the lights to start melatonin production (that hormone that makes you sleep) and anywhere from a half hour to an hour before bed I will read instead of watching TV because the lights from a screen of any sort can stimulate the brain.
#3: Wishing TS had an off button.
When my tics are really bad or they come on during something important, for instance: driving, an interview, carrying liquids, etc. I definitely wish there was an "Off button" during those times.
    Even though, these things can be a hindrance, I wouldn't change who I am and it feels good to be able to find the humor in some things.
 

My Little Blessing

    Service dogs have long been a part of our society. Some serve in our protective units such as firefighting and police work. Others serve as guides and/or companions for people with many different disorders or disabilities. There have been dogs in my house all through my growing up years. They've always been a big part of my life, but I had never found one that I really bonded with until 2011. I had been wanting a dog of my own for some time. One that I had used my own earnings to get and one that I could train and bring up myself.
    In the past I had either been too young and/or too immature to take on such a task, but one day I found myself at a local pet store. I had decided that I wanted a dachshund. We already had a pack of four canines at home, so getting another pet sounded a little daunting. I had found out they had a mini, smooth-coat dachshund there and went to check her out. She was only ten weeks old and had one brown eye and one blue eye. I always admired that in a dog. I was petting her and a loud sound scared her and she ran and hid under the bench. I called her back out and despite being scared, she came to me. I was hooked and I knew she was mine.
    So, against some of my better judgment I took her home. That was back in July of 2011. My dog, Princess, is one of the best things to happen to me. She comforts me when I'm sad, sick, or having a bad tic day. Any time I'm feeling lonely, I can cuddle her and she doesn't mind. She's the sweetest thing, has even learned to smile, and is always so happy to see me when I get home. She puts her face up against mine whenever she wants love or knows I need some. She may not be a certified therapy/service dog, but if she was, I couldn't ask for a better one.

Part of Me

    There are times in everyone's life who has TS or any other disorder that is lesser-known and/or publicly visible, when one is faced with having to fend off ignorant comments or actions. I've been fortunate enough not to encounter many of these moments, but that doesn't make it any less hurtful. On one such occasion I had a run-in with a professor, in college, who thought that because I had asked for an extension on an assignment that I was using my disorder as an excuse. Before that I could never imagine a professor being so cruel and it took a while to get past it. I don't know about the rest of you out there who live with TS, but to me, it was one of the highest insults.
    What is my point in telling you this story? Well, last week I gave a brief description on what Tourette Syndrome is and got a lot of readership from it, so I thought I would follow up a bit. I don't believe people without TS and even some who have it realize what an integral part of your life it becomes. It becomes so much a part of you that, at times, you may not even notice light ticcing. You may not even notice others who are ticcing around you, because to you it's as normal as sneezing. Just like a sneeze it can be troublesome, but that doesn't mean it is the bane of your existence. Those of us who are born with it usually learn to look at the world with a different eye. Hopefully, in most cases, it is with a deeper perception and a big heart.
    I live with TS every day and every night. I would be a different person were it not for my TS. I'm not cursed or "doomed" to live a life with TS. I am blessed to have been given an open heart for people who are not the same as me and the ability to look at people with a more unbiased discernment - a difficult task in today's untrusting society. To get a deeper look at what TS is and looks like, take a look at this excerpt from HBO's I Have Tourettes, But Tourettes Doesn't Have Me.

This second photo is courtesy of Jackie Ruth Gold.

What is it?

    As I originally said in the beginning, I created this blog as a portal into the world of Tourette Syndrome. I planned it originally to be a follow-up to an informational lecture. However, said lectures will not be taking place until later in the year, so that being said I thought it would be nice to give everyone a general explanation of what TS is.
   Tourette Syndrome is a genetic neurological disorder characterized by involuntary motor and vocal tics including, but not limited to: shaking, jerking, pressing, squeaking, etc. No one case is the same. The tics are preceded by a premonitory urge. Attempting to suppress the tics only causes undue stress on the individual. In order to be diagnosed with TS, one has to have motor tics and at least one vocal tic for a period of more than one year. This does not mean that the tics stay the same. They are always changing in frequency, type, and severity. Coprolalia (involuntary swearing) is the most publicized part of TS. However, it is only one cheerio in the box. Less than 10% of the TS population has it and just because they get it, doesn't mean they'll always have it. As I said, tics come and go.
    I will say one thing about Coprolalia on my proverbial soap box. First off, it's offensive to the TS Community that that is all most people are shown about us. It gives a bad, limited image of an already lesser-known disorder. Secondly, it doesn't really reflect badly on us. It reflects badly on the narcissistic, single minded people behind all that bad publicity - that they would stoop so low as to make something serious into a joke to get a boost in ratings, get a laugh, etc. at others' expense.

Music To My Ears

    Good Evening! I got some great inspiration for my blog today and thought I would give my own spin on it. I was reading a comment on the TS FaceBook group I belong to and a boy mentioned how music helps him. I love music. I have noise-canceling headphones that I wear with MP3 player and I love it. It's like reading a good book in that it can feel like I'm in a whole new world. (No pun intended lol) When I put them on and I start singing and dancing, my tics don't bother me. They outside world takes a back seat and so do my tics.
    So, an update on Jazzercise. I love it! I took tap and jazz when I was little and it's so great to be dancing again. Then there's that great perk of getting exercise. I've been going every other day with little to no soreness. I was talking to a friend at Jazzercise the other day and mentioned that I had TS. Her reply was, "You must have them (my tics) really under control." However, I explained to her that when I dance, the tics take a back seat because I'm so focused on what I'm doing. Not to mention there's so much movement going on that I don't have time to tic! That's a good thing by the way. I have also noticed an improvement in mood and anxiety levels. It's so that I always look forward to going back.

Tic Replacement

    Has anyone ever been sitting in class, a business meeting, or a friendly  get-together and all of the sudden there's a sudden twinge in your foot and you feel like if you don't scratch it, you'll just scream? So you take your discreetly move your foot around pretending that nothing is going on, but that itch is still there and you cannot get it to stop. That is what some tics feel like. If you don't press, shake, sniff, etc. just right, not only will the feeling not go away, but it gets worse.
    I have a particularly bad pressing tic on my shoulder. Sometimes my muscles get sore and tense from it too. Unfortunately, when it's bad, no matter how many times I press, the feeling will not go away. I heard about this thing called tic replacement therapy or habit reversal.  A consultant of mine suggested getting a hand grip and whenever I have the tic, instead of pressing my shoulder, to press on the hand grip. Now for someone with TS, a regular grip wouldn't cut it, because there's individual fingers involved. While researching different grips, I found the Grip Master. It can work your fingers individually and has a number of uses. The best part is they're small and discreet and there's different strengths for different people. I ended up getting mine on Amazon and going with the extra light tension, which is 3lbs. per finger, which may sound like a lot but actually isn't. There's an xxlight too.
    So, I suppose you're all wondering what I thought of it. I was pretty hesitant about it at first. Would it work? Would it cause another tic? It's no miracle cure and it didn't help overnight, but I found that by working each finger individually and/or all at once (with the hand that did the pressing) that it did actually seem to help. It reduced the tic. The trick has been to remember that I have it and when I get the tic, to use my gripper.

Jazzercise

Good afternoon everyone!
    It's been a great morning. My mum and I spent the morning making carrot scones, cream of carrot soup, and eggy bagels. Mmmm, the house smells so good and everything came out so well. My first cream soup all on my own. :D Yay!
    So this week I started a new workout routine. During this time of year my anxiety levels are higher and in succession, so are my tics. I've been experiencing lots of grimacing, eye crossing, and muscle clenching tics. We had been look for a place for me for while. Something that would be interactive, easy on the knees, and had multiple classes a week. We found Jazzercise. It combines Jazz, aerobics, kick boxing, and yoga to make sure you get to work all your muscles. There are ladies in my classes ranging from their teens to their eighties - no joke! Each class is a little different so that you don't get bored and the instructors are fully licensed and tell you how to do it so that you don't injure yourself or if you have a sensitive area. So, far I've experienced minimal soreness the following days and I always feel good afterwards. I definitely don't have to worry about ticcing during Jazzercise. I'm going to keep it up and see how things go. I will let you know in a two weeks how it's going, so make sure you come back for an update! I'm off to peruse the isles of Books-A-Million (BAM).