4 things someone with Tourette wants you to know

EDITOR’S NOTE: This blog entry was originally posted by Brittany Hays to ThoughtCatalog.com.

I’m sure at some point in our lives we have all come into contact with someone who has Tourette Syndrome. For those of you who haven’t, well, you have now. I have Tourette. I was diagnosed around age 9 in the fourth grade. Talk about trying to fit in. I never did ‘fit’ in, but looking back I’m glad that I didn’t.

To me, being able to live your life without the worry of upsetting a specific group of friends makes more sense, and quite frankly involves much less drama. I hate stereotypes, mainly because they give off false information that aggravates the person or group that you are stereotyping.

One stereotype that I get put into for having Tourette is that I cuss and say swear words. I have never done that. Tourette isn’t about cussing. In fact only 10 percent of people with Tourette actually cuss involuntarily (it’s called coprolalia):

1. If Tourette’s was only about swearing, I think I might actually enjoy it more. Getting to say whatever is on your mind simply because you cannot help it seems awesome, right? Well, it’s not. Try applying for a job. Who is going to want to hire someone who says “f— you” every two minutes? Not many. It’s not fun or funny. It’s humiliating. Tourette’s is about acknowledging society’s ignorance, and accepting that people are people. Now, I am not saying that I don’t ever catch myself stereotyping or judging people because I do. I mess up, and act impulsively, just like you because…well….I’m human also.

2. Have you ever been told to stop sneezing? Probably not, because most people know that you cannot control it. Imagine getting asked that when you go to order food at a restaurant because you are constantly sniffing, or are shopping in the local mall and you smack your lips all the time. It gets frustrating, but Tourette is about realizing people question everything, and that’s okay because it’s human nature. Honestly, if people didn’t question what I was doing, then I would get worried. It shows me that it’s human nature to be curious. By asking what I am doing, it lets them learn something new, and hopefully they can pass it along to others.

3. To me, Tourette is about learning to laugh at yourself and acknowledging that doing so is acceptable. If you can’t laugh at yourself, then people are going to assume that your Tourette is a weakness for you. Yes, at times I would enjoy a little break, but in the end I am a stronger, more intelligent person because of my ability to embrace what would be considered a weakness.

4. My Tourette has allowed me to appreciate differences in people. It’s taught me to not only be more accepting of myself, but also of others. You never know what anyone is going through until you have been in their shoes. Having Tourette has given me a way to see the world in different ways. I aspire to learn about others, so that I can learn about myself. Aren’t we all connected? Don’t we all deserve dignity and respect?

You see, I don’t want sympathy from people, or to hear, I’m sorry, that must suck. Yes, at times it does suck but you know what? I am alive. I have a house, and wonderful parents who have provided me with a life of happiness, so if the worst of what I must go through is to have this disorder which in turn has only made me a stronger individual, then I am grateful. I am grateful that I do not have to wake up in a hospital bed, or out on the streets. I’ve been blessed, even if that blessing seems hidden at times.

Embrace your differences. If each of us were the same, this world would be dull and boring. Be curious without being cruel.

What’s A Tic? Part 2 — Tic Classifications

What Are Tics

There are different classifications for tics, motor vs. vocal (Do you do it with you muscles or with your voice?) and simple vs. complex (How many muscles groups are involved in the movement?) As I said in part 1 of this 3-part series, there are all different kinds of tics, so many that there isn’t a definitive list of what can be a tic and what can’t. Why? Because every person’s body and brain is different. This means the tics his brain comes up with will be different from those of his neighbor with tics.

I created this table based on information from Mayo ClinicTouretteSyndrome.net, the National Institute of Neurological Disorders and StrokeTSA-USA (one of the leading support groups for individuals with Tourettes in the United States), and my own personal experience:

Common Tics

The tics listed here are some of the more common tics found in people with Tourette. My first tic was blinking, which was then followed by throat clearing, Squeaking, and my lip touching tic. My tics showed up as many tics do. Rapid, repetitive blinking is seems to be considered the most common first tic that shows up in children with Tourette Syndrome or tic disorders.

There are more extreme versions of tics that can be found in more severe cases, however. Probably the most popular one is Coprolalia, or the infamous swearing tic, where individuals who suffer from this particular tic can blurt out socially and culturally inappropriate words and phrases. There are a few things to know about Coprolalia, however:

  1. Coprolalia is found in only 10% of people with Tourettes, according to Live Science’s article, “Why Does Tourette’s Make People Curse Uncontrollably?” (I’ve heard 5%-15% from other sources as well.)
  2. Live Science also says that Coprolalia is said to be caused by some form of neurological damage, although we’re not sure why yet. It can also be found in individuals with
  3. The individuals who do suffer from this disorder don’t do it for attention or fun. In fact, it can be highly embarrassing when it does occur, and as with other tics, must be treated with care and kindness.

Because Tourette Syndrome (and tic disorders) are on a spectrum, the severity of tics will differ in individuals. My Tourettes is fairly mild so my tics are generally manageable with good diet, exercise and self-taught management techniques. There are some individuals, however, who have symptoms so severe they interfere with safety and health, such as this young man here:

Medical Miracle Tourettes

Myths and truths about Tourette Syndrome

Ever since George Gilles de la Tourette discovered Tourette have people discussed and questioned real signs of the syndrome. Everything starting with how the disorder manifest and ending with the ways it should be treated is being discussed by doctors, patients and their relatives for over 100 years.

The general meaning of the syndrome is described as a neurological disorder which is characterized by frequent involuntary vocal tics and movements.

According to a PhD clinical researcher and doctor Douglas Woods, Tourette happens in 6 to 1000 people. Adults and kids suffering from the disorder can experience numerous problems like repetitive strain injuries, numbness, and ADHD. Kids suffering from Tourette increase chances of getting ADHD (attention deficit-hyperactivity disorder) 60% more.

In this article we will go through top myths and truths about Tourette syndrome to create a clear picture of the disorder:

  • Myth #1. Everyone with Tourette syndrome use obscenities uncontrollably. The majority of people describe Tourette syndrome as such that makes you swear uncontrollably, in fact some believe it to be the definition of the syndrome as they often see in movies. However, only 10% of people with the syndrome experience it.
  • Myth #2. Tourette is caused by bad parenting. Doctor Woods says that the syndrome is genetically based. And although scientists couldn’t isolate a single gene, they came to a conclusion that it is a complex of genes that causes the syndrome, which proves that it has nothing to do with parenting.
  • Myth #3. Fear causes tics. Some people think that tics caused by Tourette syndrome are actually caused by nervous surrounding and fearful environment around the patient. In reality, it has nothing to do with the way of living, it is caused by the basal ganglia dysfunction, involved in motor control.
  • Myth #4. Medication is the only treatment. It appears that medication is not the only treatment when it comes to Tourette. If tics aren’t repetitive enough, individuals, especially children can be cured with a help of behavior therapy. The therapy teaches patients to recognize the time when tic is about to happen in order to control and even prevent it. People with Tourette syndrome admit to experience a premonitory urge right before the tic, which can be expressed as an itch or tickle.
  • Myth #5. Teaching kids to recognize tics can increase their repetitiveness. Researcher found that kids who have successfully suppress tics, do not have an increase in tics. The lasts study showed that in some cases, tics decreased by 17 % after the therapy.
  • Myth #6. People with Tourette cannot lead normal, active lives. On the contrary, people diagnosed with Tourette syndrome tend to be highly successful people. David Beckham, Michael Wolf, Dan Ackroyd and Marc Summers are living illustrations of successful people who have Tourette. 

Guest blogger: Sophia and her TS

Sophia talks to Tourettes Action about her experiences of living with TS and what it means to her.

For me, Tourette’s made its appearance a little later than usual. I was 16 and had just been diagnosed with autism spectrum disorder, OCD and depression. Antidepressants were prescribed to help me manage my anxiety.

One morning, I woke up and was no longer in control of my body movements, my arms and legs were doing exactly what they wanted to, as if they were not a part of my body. I kept making noises, barking and meowing. I couldn’t stop. The inside of my body felt as if there were ants running inside me, combined with a strong burning sensation, a building tension that reduced ever so briefly, but only after a ‘tic’.

From that day, my tics became more complex and at one stage the movements were constant. I shouted things out and repeated other people’s words, phrases and actions. A constant feeling of unease, not knowing what was going to come out of my mouth until it had been said. Not only did I have to adjust to my new situation, I also had to accept the stares of onlookers, many of whom had only ever seen Tourette’s in the media.

Unfortunately, the media often has a tendency of over focusing on the ‘swearing tic’, known as coprolalia, which only affects a small number of those who have Tourette’s. “I wish I had Tourette’s so I could just swear all the time” is a phrase that I’ve heard more times than I would have liked to. Coprolalia is involuntary and certainly not something Tourette’s sufferers enjoy having, nor do they use it as an excuse to swear.

Tourette’s is more than just tics, many of us have multiple co-occurring conditions that have their own symptoms. Although Tourette’s is manifested outwardly, sometimes it is the symptoms people can’t see that cause us the most problems.

Two years passed, along with lots of hospital visits. Tourette Syndrome was mentioned throughout, but my official diagnosis was given to me at the age of 18. Now, I am studying Psychology at University. My tics change in frequency and severity, new tics emerge and old ones return. I have slowly learnt to accept my conditions and I am fortunate in that I am surrounded by wonderful people, who are incredibly supportive.

I think it is important to educate and challenge the stereotypes. To become your own advocate and to embrace what Tourette’s has taught you. To those reading this who have Tourette’s themselves:

“Keep Calm and Tic On!”

Stop the stigma

Good advice in general, but especially when it has become common to cite not always well understood disorders in joking. If someone isn’t struggling with obsessions and compulsions for hours a day they are not “so OCD”, a person who just can’t make up their mind is not “totally bipolar”, and a person who just likes to swear does not “sound like they have Tourettes”.

Guest blogger: “I swear it isn’t true”

EDITOR’S NOTE: This post was shared by Tourettes Action on its Facebook page. It originally comes from the blog of guest blogger Adrian.

mind1

For nearly three years I’ve written a blog about running and mental health, and in particularly the impact of exercise on mental health, and vice versa. I’ve gone from a non-runner seeing everyone else do it, to a seasoned marathon runner, who alas is still beaten by the unprepared drunk smoker.

I’ve raced alongside men and women of every height, shape, size and disability and have had every sense of ego beaten out of me. More importantly, I hope my blogs have opened up a discussion about mental health, which still leaves millions suffering in silence due to the stigma attached, and the lack of government support for what is a huge problem in the UK and globally.

Through running, sales and various other events online and offline, I’ve managed to raise around £5000 for Mind and it is without doubt the best thing I’ve done, except perhaps for inventing the Snickers bagel.

However, I feel the need to apologise. I’ve written in depth of my own story, usually trying to use humour to keep people reading, thinking and supporting the cause. I’ve admitted my own battles with depression which have taken over much of my life, and which I’m aware will always be there.

Sometimes it’s the only way I see my life ending, but then something comes along and gives you hope. It does always get better, we all hang on to that fact, but battling year after year can take its toll on anyone. All any of us can do is keep talking, listening, trying to understand and realising that whatever problem someone has, physical, mental or just a difficult time in life, we’re all here together.

So why am I apologising? Well, I’ve held back a lot in what I’ve wanted to write about. I don’t just suffer from depression although it’s been a huge part of my life. I find that easier to write about because it impacts more people and helps more people relate, Mind is big enough charity to make real positive change and needs our help. I wanted to fight stigma, and it remains slightly cool because Stephen Fry has it. I’m half joking.

logo_tourettesaction

Yet I have Tourette Syndrome. I hate the words. The sound of them, the sight of them, even grammatically, is it Tourette’s Syndrome? I suggest so given it’s named after someone called Tourette. Why couldn’t he have been called Gilles de la Awesome. I’ve got awesome syndrome. Or as the public seem to know it, hilarious swearing disease.

The butt of many jokes in TV and films, always the same with someone swearing inappropriately at a person or quiet location. I’m yet to see a genuinely funny Tourette’s joke. Perhaps that’s my main problem with it. I’m more offended as a comedy fanboy than I am as a Tourette’s sufferer. I once mocked someone drunkenly walking into a lamppost and several seconds later twitched myself into the same lamppost and fell over. Tourettic retribution.

The public perception has meant many people would have no idea I have it, some might not believe me now, some haven’t in the past. Sometimes I’ll be controlling it very well, maybe for months, but it is very much still there. More of you will of course be thinking, yeah, we knew all that you twitchy freak. And I have no problem with that.

Continue reading

The experiences of diagnosis in adults with Tourette Syndrome

TS is a clinical diagnosis, meaning that there is not a specific test for the disorder, it has been noted to be difficult to diagnose with research showing delays in the diagnosis of TS (Wand et al., 1992; Freeman et al., 2000; Shilon et al., 2008). Cultural factors may also play a role in the social perceptions of TS and differences were found between cultures regarding the impact of TS on quality of life (Mathews et al., 2001; Zinner et al., 2012).

Very little research has looked at the subjective experience of having TS and as far as the author is aware there are no studies which have investigated the reasons for wanting or not wanting diagnosis in TS and whether having a diagnosis is a positive or negative experience for those with the disorder.

Looking at neurodevelopmental disorders such as autism spectrum disorders, attention deficit hyperactivity disorder and motor disorders, it appears that there are a range of advantages and disadvantages related to obtaining a diagnosis of a neurodevelopmental disorder. Significant disadvantages relate to the lack of a cure and the stigma associated with the disorder and the significant advantages are related to help and support following diagnosis and greater understanding of the disorder.

The aim of this research was to find out the experiences of those with Tourette syndrome (TS), specifically what having a diagnosis means and whether it this is useful for those with TS.

Method – Nine adult participants with TS were recruited through Tourette’s Action. Semi-structured interviews were completed either face to face or via telephone and the resulting transcripts were analysed using thematic analysis.

Results – There were three main themes resulting from the data: Continue reading

Spotting Tourette in the Classroom, Part 2: So what’s a teacher to do?

Spotting Tourettes in the Classroom

Everyone remembers that kid in class who made weird noises to annoy the teacher. But what about those instances where the noises aren’t meant to drive the teacher crazy? Is it possible a student might be dealing with Tourette Syndrome? How do you know if it’s a Tic Disorder, Tourette, or just another attempt to annoy everyone around him? Today we’re going to discuss what teachers can do properly when they encounter Tourette in the classroom.

Once a teacher realizes the child has symptoms that match a tic disorder or Tourette, there are basic accommodations that can be made in the classroom. Some of these can be best made with IEPs (Individualized Education Plans) or in basic, quiet changes only known by the teacher and student. Here are a few good tips I’ve found:

From Northern Illinois University College of Education

  • Have a duplicate set of text books for the child to keep at home. This can help students who might have missed details of the text because of the ticcing. Just think, if your head is constantly jerking or your eyes are constantly blinking, it can be quite distracting in the classroom. You might need to go over the material again later.
  • Use a seating chart to allow for any movement tics. This is especially helpful if the child has a tic like jumping or jerking, something where she needs to move, and it will lessen the distraction to other students.

From the Newtown PAC Family Resource Center by Susan Conners, M.Ed., Education Specialist, TSA, Inc.

  • Give the child frequent breaks out of the classroom to release tics in a less embarrassing environment, e.g. the bathroom, the drinking fountain, a real or made up errand to run. It’s important to have a safe place where the student can go to release his tics, somewhere where he won’t feel embarrassed to let out the extra energy burning up inside of him.
  • Do not penalize students for poor handwriting. Provide alternatives for doing tests, assignments, etc. (orally, taped). It can be difficult to write well when your hand is constantly moving on its own accord. This is an accommodation that might be best discussed in an IEP meeting (a meeting between the teacher, any school staff involved in this part of the student’s education, such as school psychologist, counselor, principal, and resource teacher, and the parents). Continue reading

10 Common Tourette’s Questions & Answers, Part 2

Living with neurological disorders can be full of challenges for both children and adults. The good news is that life with these disorders can still be filled with joy and adventure. It just takes some creative thinking and flexibility to get there, and that’s what I’m here to help with! Visit me on my own site, brittanyfichterwrites.com, if you want to know more!

10 Common Questions and Answers About Tourette Syndrome

Tourette Syndrome, despite all the information we’ve gained in the last 15 years, is still a hard topic to find information on. Unfortunately, the media has chosen to pick out the parts of the disorder that it deems funny, and the rest of the information seems tucked away in textbooks on dusty corners of doctors’ desks.

Well, no more. Here is the second of 10 questions that touch on topics I’ve talked about with parents of children (and individuals) with Tourettes multiple times. You want a quick, easy answer to share with someone who doesn’t understand? Hopefully, I’ll have it right here as part of this series!

In case you missed it, here is part 1.

Also, if you want more information about a certain topic, I’ve linked related posts underneath each answer. My related posts will have more sources that you can look up on the topic if you so desire.

Is Tourettes About Cussing?

Despite the picture the media paints of typical Tourette Syndrome it’s estimated that only 5 to 15 percent of people with Tourette Syndrome have Coprolalia, or the version of Tourette Syndrome that involves cursing, according to the Counsellng Directory article, Tourette’s syndrome.

For more information, see: Busting 5 Myths About Tourette’s Syndrome

Busting5mythsabouttourettessyndrome

52 Weeks of TS: Week 1

EDITOR’S NOTE: Beginning today and running every Tuesday for the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. For more information about Troye, please click on his name or visit his website.

Individuality?  We all struggle to achieve it in our lives, well most of us.  I try in many ways to grasp a fraction of individualism, while also struggling to look like everyone else.  As a sufferer of Tourette Syndrome, I’m already given a uniqueness, a distinct quality. With this added quality to my person, I strive to look like everyone else around me in hopes to disguise my tics.

With this blog I want to show some reality and discredit some of the ridiculous stereotypes out there about TS.  We are not all running around screaming profanities (Coprolalia).  TS varies greatly from person to person, and there is only about 10 percent of people with TS that have Coprolalia.

Most people with TS suffer from a range of tics, and a range of underlying disorders.  As for me, my range of tics includes neck shakes, neck rolls, shoulder rolls, arm flexing, and a throat clear. On occasion, usually when I’m very stressed, or have had a few drinks I do suffer from a mild Coprolalia. My underlying conditions consist of, ADD, ADHD, OCD and social anxiety disorder.

52 Weeks of TS is basically my online diary for people in and out of the TS community to experience and understand more about this syndrome from one person’s perspective.  I will be discussing my week living with my tics, and especially my day to day struggle with my anxiety disorder and OCD. These two conditions really afflict my life and cause for daily struggles, but I push on!

Based on a normal week, this one was not so bad. Along with the blog, I also have written a book named A Day in the Life of Tourette Syndrome.  It is a biography of 17 people of all ages with Tourette Syndrome.

My doctor gave me Adderall for my ADD and ADHD. I was excited because after the first couple of days on this new medication, I felt like my tics had calmed down.  Alas it was all but true. I know that this medication is not for tics, but I was hopeful for a moment. For me the medication seems to be working for my concentration. Along with Adderall, I am also on Klonopin for my anxiety disorder.

I’m prescribed these drugs to be taken every day twice a day. I have discussed my regimen with my doctor, and I only take the medication when I feel the need. If I feel I’m about to have an anxiety attack or my anxiety is higher than usual, I will take a Klonopin. If I’m having trouble concentrating and trying to work on one of my writing projects, I take my Adderall. Like I said this is a regimen discussed with my doctor.  Talk to your doctor before changing any medication regimens. With all medication, especially for TS it comes down to trial and error.

I know this posting was not too much discussion of my week, but more an introduction and invitation to my 52-week journey. I hope that all can learn something and hope to help at least one of you.

Until next week, “I’ll tic to you later.”