10 Common Tourette’s Questions & Answers, Part 3

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 third 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 them, here are links to the first two parts:

Part 1
Part 2

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.

Can’t You Just Stop?

Imagine you have a told, the kind where you have that really annoying little cough, the kind that happens every 30 seconds. Now remember what it feels like to try and stop that cough. You might be able to suppress is for an minute, maybe two. But eventually, you’ll have to cough, and when you do, you’re going to have a coughing fit.

That’s exactly what it feels like to suppress ticcing. If I think about it, I can often suppress my tics (The length of time depends on how strong the tics are that day.), but when I’m done, I’m going to pay for it afterward, often when I get home or back in the car. So when people tell children with tics, “Can’t you just stop?!” there’s a good chance they probably can’t.

For more information, see: Tourettes Isn’t Always Obvious: The Hidden Struggle

Tourettes Isn't Always Obvious

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 12

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 11 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Hey world, get off the phone!! Technology is killing me. I witnessed a scuffle between two people on the street, because they both ran into each other because they were too busy on their phones. Walking around NYC, you see a majority of the people texting, or talking on their phones. You can even catch someone actually on his or her computer.

I’m not sure how to link this with my TS, but I’m sure I can. People drive me crazy. Is it my social anxiety, my OCD or a mix of both? I hate walking down the sidewalk, trying to dodge all the people on their cell phones that are not paying attention to the world around them. Do they really think this is socially acceptable? Where has technology taken us?

I’m not sure if it is my TS, but when I was younger, I had a thing with numbers. I had a little bit of a photographic memory, now I feel like we’re all turning to some type of technology to do anything in our lives. I don’t know anyone’s phone number except my husbands. Now all we do is press a name and it automatically dials for us.

To this day, I still remember my child hood phone number, grandmother’s phone number, aunt and uncle’s phone number, but now I have to look in my phone to give someone my work number. It’s sad what we have turned into, and who knows where the next step is going to take us.

I suppose I’m fine with most technology as long as it stops slowing the world down and making me late. That’s one of my big things, I hate being late, and I hate waiting. So when people are slowly walking down the sidewalk and not paying attention, there’re making me late. My head goes crazy with these thoughts, even though, for example, I’m never late for work. In fact, I’m usually there 15 to 30 minutes early, left outside waiting for someone who has keys to arrive.

I sit there waiting and the OCD sets in. I stare at the windows of the building across the street while I wait and think, are there people looking out those windows at me? Do they see me ticcing? Do the people in the cars, driving by, see me ticcing. I do this every day before work, and I don’t know why. I know the person with the keys is going to be late, she’s been late every day for the five years I’ve worked there, but I just can’t be late.

I still suppress my tics at work as much as I can. Everyone knows I have TS, but I only really talk about the extent of it with a few people.

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10 Common Tourette’s Questions & Answers, Part 1

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 first 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!

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.

What Are Tics in Tourette Syndrome? Are they Bugs?

No, the bug version is spelled, “T-I-C-K.” Tics that are found in Tourette Syndrome and Tic Disorders are defined as, “sudden twitches, movements, or sounds that people do repeatedly,” by the Center of Disease Control’s article, Facts About Tourette Syndrome. Tics can increase or decrease, and are often exacerbated by heightened stress levels, physical injuries, illness, or even seeing other people tic.

Because Tourette Syndrome is a neurological disorder, it’s probable that tics originate in the brain. According to the National Institutes of of Health article, Basal ganglia dysfunction in Tourette’s syndrome: a new hypothesis, Tourettes hypothesized to involve in the Basal Ganglia portion of the brain.

For more information, see: What is Tourette Syndrome?

Tourette Spectrum

Help make workplaces TS-friendly!

Many people tell the Tourette Syndrome Foundation of Canada (TSFC) that they are concerned about workplace discrimination. We are too! The TSFC is committed to advocating for appropriate, improved and respectful treatment of people with TS in the workplace.

The first step in improving workplace conditions and reducing workplace discrimination is gathering information. We need to learn about what is happening in workplaces right now and what has happened in workplaces in the past.

To do this, the TSFC has joined forces with York University to create an anonymous, short, easy-to-use e-survey about what is like to have TS and work. This is where you come in.

We need your help in getting this survey filled out by as many people as possible. Every time someone fills out the online survey, the TSFC’s ability to advocate for positive change grows stronger.

Help make sure that the rights of people with TS in the workplace are protected! It only takes a few minutes of your time! If you are 18 years or old, have TS and are either working or have worked in the past, please click here: https://www.surveymonkey.com/s/tourettesurvey

And if you know someone with TS who is 18+ and has work experience, please share the link with them. Together we can create an empowered community in an inclusive Canada.

Tourette Legacy Files, Part 1: Terry Ferguson

In this new blog series, we honour the men and women who helped the Tourette Syndrome Foundation of Canada (TSFC) rise from its humble roots and explore the events that shaped its history.

Terry was there from the beginning.

According to an early issue of The Green Leaflet (lovingly published in a Toronto basement using a hand roller press and carbon paper in March 1979), Terry was “one of the earliest to be diagnosed as having Tourette’s Syndrome in Canada.”

Mr. Ferguson was very open about his TS, and had up-to-date knowledge about neurological disorders other than his own. A passionate volunteer for the TS cause, Terry sat on the TSFC Board of Directors as well as “serving on the executive of the Gravenhurst Kinsmen Club,” an Ontario community in which he owned and operated The Muskokan Motel.

Terry was a very kind man, his presence being “a terrific morale booster for many of our members.” He loved photography and electronics. “An avid correspondent,” Mr. Ferguson was always “willing to exchange letters with any member.”

daddy & us

But Terry’s story and his legacy do not end there.

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52 Weeks of TS: Week 11

EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 10 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

I have Tourette syndrome. Have I mentioned this before? Well of course I have, maybe too much. That thought has been going through my head all week. Do I talk about my TS too much? Does the constant conversation feed my disorder? I mean it’s not as if I’m walking around and telling strangers, “Hey, I have TS”, but I continually bring up the conversation in certain social settings. I guess what I’m saying is, is it too much? Is my activism annoying people? Well if it is, guess what? I don’t care!!

Like I said before, I’m a super hero armed with a mouth, and the first step to education is opening that mouth. I HAVE TOURETTE SYNDROME. This is why I do what I do, if you want to ask me about it, I would love to tell you whatever you want to know.

I actually had a pleasant conversation this week with someone about TS. I had to get a heart sonogram because I’m on Adderall and because my mother passed away at a young age from a heart attack (love you, miss you mom). The technician performing the procedure had me in a position that I was afraid I was going to hit her with my elbow when I ticced.

She let me position myself to where I was comfortable. Not knowing much about TS, she openly asked me question after question, and I openly answered all of her questions. It was a great feeling to be approached on the situation as she did, and to then educate her. Yes, educate someone in the medical field.

I wish it was this easy in all situations, but it’s not. I had a friend ask me, “If someone was to approach me about my TS, how would I like them to do that?” That’s an easy answer for me, just ask me, but that’s just me. There are many people out there who are not as comfortable as I am. It can be a very delicate situation, but I guess to answer the question, you really have to feel out the situation.

If you notice someone ticcing and you feel the need to approach the situation, start off discreetly and with compassion. The person is more likely aware of what they are doing, but more importantly probably very self-conscious of their TS. I am very open about my TS, but that doesn’t mean I’m not self-conscious myself.

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Concerned about my son and his tics

I am a concerned mother for my 5 1/2-year-old son, Ethan. He has blinking tics since probably a half-year ago, on and off. And since last week, I have noticed that he also turns his head and neck repetitively left and right, along with some shoulder shrugging. Last week, as we were on the road, he did eat more sugar and no homemade food.

There have been a few times during the past 2 years that he has burped for 10-15 seconds before he falls asleep. This usually happens when he has a cold, and he also passes gas a lot at the same time. I think my son was burly when he was a baby, and I am not sure if it is vocal tics.

At birth, he had silent acid reflux, but with a bit medicine, he grew out of it. He is otherwise a happy boy and pays good attention to building his Legos every day! I spoke to the PED today, and she thinks Ethan has tics. She referred me to a pediatric neurologist, but at this point, I want to try the natural path first before going to the neurologist.

Please kindly give me any advice you might have. I am very scared at this point.

52 Weeks of TS: Week 10

EDITOR’S NOTE: Each Tuesday, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 9 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

It’s Sunday morning, 9:30, oops I guess it’s 10:30 with daylight savings time.  Now I have to go around my house and change all the clocks, but I’m putting it off.  At least I’m going to try, but it will annoy me until they are all the right time.  I’m very tired and in pain, it was a rough night.  My husband and I got home last night around 10:00 pm.

The first thing I do when I get home is go into my bedroom and say “hi” to my kitties, my loves. I walked into my bedroom and found one of the cats on the floor playing with something, which is not unusual.  I figured it was a piece of one of my plants that dried up and fell off.  I started to bend down to say hi, and take the leaf from her.  IT WAS NOT A LEAF!!

I stood up, froze and screamed for my husband as the cat batted around a still live but injured mouse the size of a quarter.  He was so small and yes, somewhat cute, but are you serious?!  I clean, and clean my house, I have three cats, and there should be no reason that there is a mouse in my house.  I know it came from my downstairs neighbor, but it is in my house now, in my cat’s mouth.  She continued playing with it, until she let it go and it ran under the TV stand.

The cats continued stalking the mouse in the bedroom.  Instead of going to sleep, I went into the living room to try to watch TV and relax.  It was too late to relax, my anxiety level is through the roof and all my tics were here to say hello.  For the next two hours, I had my husband check to see if they caught it or not, while I flung my neck around and bashed my elbow into my ribs.

My husband kept saying, “Relax, it’s only a mouse.”  Yeah, I know that, I’m not an idiot.

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My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

I don’t watch Dancing with the Stars often, but when I heard that there was going to be a  Disney night, I couldn’t resist. And I was not disappointed.

I grew up dancing. It was always one of the biggest parts of my life, but I didn’t realize how much it did to improve my Tourette Syndrome, OCD tendencies and anxiety until I graduated from high school and my tics began to get worse. I’ve given it quite a lot of thought, trying to put into words what my body and soul feel when I’m dancing, attempting to make sense of why dance so helps calm my mind and loosen my tics that cling so tightly to me.

This is what I’ve come up with.

How Dancing Improves My Tourette

If you’re not familiar with Tourette, having it makes you feel like you’ve got a million little bursts of energy all over your body. These bursts of energy make you feel like you need to constantly move, your tics (involuntary vocal sounds or physical movements), itching to escape. Suppression is possible, briefly, but what you’re left with is a body with a ton of energy that has nowhere else to go.

Unless you dance.

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