Tourette Syndrome is so much more than tics

Sorry there hasn’t been any posts in a while. All of us are busy with exams at the moment.

I would like to share with you my speech I did for my GCSE English Speaking exam about Tourette Syndrome so here it is:

Tourette Syndrome is a neurological condition which is categorised by “tics”. Tics are rapid and recurrent uncontrollable movements and noises. People who suffer from Tourettes are usually diagnosed at around 6-9 years old. Although, people may be diagnosed earlier or later than this. I, personally, was diagnosed with Tourette Syndrome 9 years ago, when I was 7 years old.

I have always been treated differently due to being adopted and, therefore, having older parents. I was always known as “the weird one”. People can be very mean when you’re different. I have always had Tourettes since I was little. I would often do something without realising and then get told off because of it.

I still do occasionally get told off for my tics, but then the person remembers that I have Tourettes and that I can’t help it. Even my parents do this sometimes. I may be tapping on something and they’ll tell me to stop only for me to remind them that I can’t help it. I feel like this only happens due to peoples perception of what a tic should look or sound like, but the thing is that there is no structure to a tic. They can be anything at all. My tapping tic is where I have to tap an object using a certain pattern which I have to repeat in sets of four until it feels right and if I mess it up, I must start the pattern all over again.

I can understand how my parents sometimes do not realise this is a tic, because it isn’t just a tic. It is also due to OCD. The counting part is OCD, and the part where I have to do it again and again if I mess up is also to do with OCD. It isn’t as though I think something bad will happen if I don’t do it, it is that my OCD makes me feel as though something might happen if I don’t complete it.

Due to Tourettes I also have other, related, disorders. OCD is the one I just mentioned.

I also have ADHD which causes me to get distracted very easily, causing me to often get told off in class for not concentrating, and I often miss things the teacher says due to getting distracted by others or writing down notes – I find it hard to concentrate on writing and listening at the same time.

There is also Sensory Processing Disorder. This means that I do not process sensory input in the same way as others do. There are certain noises I do not like and the only way to explain how they affect me in a way you’ll understand is that they hurt me, that is why I have my ear defenders. They protect me from these noises and I can also use them when I need to write and there is too much noise.

Due to this, at dinner time, I tend to sit in a different room to eat or listen to music while I eat so I don’t hear the sound of cutlery scraping on plates. My parents try not to do this, but it is hard to eat without touching your plate with the knife or fork so everyday, except Sunday, I sit in a separate room to eat. Hearing these certain noises that I am sensitive to makes it extremely hard to concentrate as all I end up thinking about is how I want the noise to stop, or that I want to get away from the sound.

All of this is just due to having Tourette Syndrome. People always assume that they know everything about Tourettes but it is so much more and can affect those with it in many different ways. I need people to know that there aren’t only tics that I have to deal with, but there are also OCD rituals as well as concentration and sensory issues too.

Tourette Syndrome is so much more than just tics. I want others to see that. Thank you.

My Toolbox for Tackling Sensory Overloads

As a fellow teen with TS, I have experienced the typical “tic outbreaks” and “sensory overloads” most of us have on certain days. I also know that they sometimes come at times where you need to do important tasks. So, how do I manage these moments?

First, you have to know your location of your tic outbreak: These are examples everyday places:

  • School
  • Home
  • Sporting event

Then, you need to go to a quiet place:

  • In school, I go to the hallway (preferably one with windows)
  • at home, I go to my backyard
  • At a sporting event, I usually go to a hallway also

Then, You need to be able to perceive the current environment you’re in to be calming. Then, Take a deep breath, and notice the color of the grass, the animals outside, or the cars passing by. I hang out with my chickens when I’m stressed (I practice taking pictures  of my chickens to help me relax. This is of my chicken named Oatmeal):

Then, after you take a minute to relax, your tics and stress will calm down, and now you can resume your activity stress-free. Remember, Don’t make a 2 minute break a 30 minute break!

I SAID YES!

Last night the guy I have been going on dates with asked me if I would like to go out with him officially. I said yes! 🙂

So now I can say that we’re officially going out and that for now I am no longer single. I like so much about him. I really like how open he is with me and that he is not afraid to show me who he truly is. I also really like his personality in general and how he is a really great conversationalist.

We always have something to talk about and it’s always engaging and thought provoking to be around him. I like that he wants to spend time getting to know me and he really seems to like me. He gives me so many complements and tells me how cute I am, how much he likes spending time with me, and how happy he is that he met me.

Today he opened up to me about some things that were more on the personal side, and even though I was hesitant to, I opened up to him more too. I told me that I have sensory issues and OCD traits. He seemed really OK with it and didn’t seem to think much of it at all. It didn’t seem to affect how he feels about me and after I told him that he asked me to get ice cream later tonight and hang out more.

This gives me more confidence that if I told him about my tics, it wouldn’t affect how he feels about me either. There is still that nagging thought in the back of my head though, that fear that he will not accept me. I know it’s just the fear that has been instilled in me by my parents that is making me feel this way. I know intellectually that he probably won’t reject me because of my tics. The fear and the emotion is so real though. I think at this point I just have to take a leap of faith and plunge off the diving board. I think the sooner I make the leap, the easier it will be to be myself around him.

I’m not sure when exactly i’m going to take that leap and tell him, but I am hoping I will have the courage to do it soon, maybe even tonight when we get ice cream together. I plan on telling him in a very casual way and not making a big deal about it. I’ll keep you guys updated on what I decide to do! Please wish me luck! 🙂

Tourette’s and OCD, Cousins or Siblings?

I have yet to meet another person with Tourette’s who does not also have at least one comorbid condition. For me, there has not just been one, but at least three of these ‘cousins’ as they are frequently called.

There are so many disorders and syndromes that are so closely related and occur simultaneously that I could not possibly begin to list them all. the symptoms of some disorders are so similar that it is easy to mistake one for another. There are many people who go misdiagnosed because of this. This is why comorbid conditions are often referred to as “cousins”, because they are so similar and closely related, just as members of a family might be.

I have family members who have been mistaken for each other either because they sound like the other person over the phone or because they look so much alike that someone who has not seem either one of them in a long time mistook one for the other. For example, when my sister and my cousin were younger, people mistook them for sisters rather than cousins when they were together. My sister has always looked as though she belonged to my aunt rather than my mother.

Obsessive Compulsive Disorder (OCD) is one of the conditions that can co-occur with Tourette’s. A person with OCD has obsessions and compulsions. Basically, you have an obsession, a thought that will not leave and causes you anxiety, and the only way to relieve that anxiety is to carry out a compulsion. The obsessions and compulsions can consist of a variety of things.

Everyone forgets what day of the week it is once in a while. At least, I think everyone does that once in a while. I’m really hoping it’s not just me. For me, though, it causes this anxiety and I think, “Oh my gosh, I thought today was Saturday and it’s really Friday. What if I forget what day it is tomorrow and something bad happens because I forget what day it is and forget to do something or go somewhere?”  Actually, it feels a bit more like this as it goes through my head,

“OHMYGOSHITHOUGHTTODAYWASSATURDAYANDITSREALLYFRIDAYANDWHATIFIFORGETWHATDAYITISTOMORROWANDSOMETHINGBADHAPPENSBECAUSEIFORGOTWHATDAYITISANDFORGETTODOSOMETHINGORGOSOMEWHEREORSOMETHINGLIKETHAT!?!?!?!?”

To relieve the anxiety caused and keep ‘imagined bad thing that will happen because I forgot what day it was’ from happening, I repeat this over and over in my head or even out loud if it feels necessary, “Tomorrow is Saturday, not Sunday because today is Friday, not Saturday.”

For a lot of us who have both OCD and Tourette’s, it is sometimes easy to mistake the two as siblings.

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It’s that time of year again …

Well, it’s that time of year again that every ticcer seems to look forward to and dread at the same time — the holiday season. With all the commotion, excitement, preparation and family, tics always seem to run rampant this time of year. Today is the day of my family’s yearly Hanukkah party and my tics are getting pretty darn forceful.

After 5 months of CBIT treatment for my tics, my tics have been steadily decreeing, and i’ve started to get used to having less tics. However, coming home for winter break and having the holiday season has not been great for my tics.

Being around my family members is very stressful for me (tic wise), and I’m sure those of you who have been following my blog for a while know why. For those of you who have not been following my blog, I’ll just say this: I come from a family who values perfection and social status, and Tourette’s doesn’t really fit into that mold very well. Don’t get me wrong, I love my family and I really do enjoy being home and spending time with them, but it’s very rough on my tics and anxiety.

Being in my home environment has quickly made my tics increase. When I saw my CBIT therapist last week, she immediately noticed how much I was ticcing and told me she hadn’t seen my tic this much in months. We discussed new strategies to try to decrease my tics in the home environment, such as taking “tic breaks” where I excuse myself to go to the bathroom while i’m around my family and just trying to spend less time around my family members (spending time with them in 30 min increments).

These strategies seem to be helping to some extent, but my tics are still much worse than they have been over the past few months. As soon as i’m able to escape to a place where I can let my tics out, I start having so many facial tics, vocal tics, head and neck tics, and even full body tics. The other day I spent a solid period of time parked in a parking garage kicking, vocal ticcing, and jerking my body so hard that I felt my brain rattling around in my skull and got pretty dizzy.

Right now, I’m up in my room while my parents prepare for the party. I’ve been helping prepare for the party quite a bit, but I had to escape to my room to tic and also to avoid the onion cutting. When my mom cuts onions for the Latkes for this party, my sensory processing issues go into overdrive as soon as my eyes feel any small amount of onion.

It feels as if the onions are going in through my eyes and are filling my entire head with this sour and tingling feeling. The feeling will last for hours after the onions have been cut. Even though i’ve been avoiding the downstairs as much as I can, I’ve still gotten a bit of the onion feeling in my eyes. It’s not nearly as bad as last year, but it’s definitely still contributing to my tics.

I’m having a lot of tics right now. I hope they calm down for the party, but I kind of doubt they will. Luckily one of my very good friends will be coming to the party. Having her there will help me feel better, and like the previous years i’ll be able to come upstairs with her to let out my bigger tics.

Anyway, I will probably make a post after the party is over about how it went. Happy Holidays to everyone, and good luck to everyone trying to manage the holidays with tics!

Can you help me with my research?

I am currently an undergraduate student studying Special Educational Needs and Inclusion at Bishop Grosseteste University. I am currently working on my undergraduate dissertation and it is at this point that I need your help!

I am looking for pupils to participate in a research study looking at the relationship between Tourette Syndrome and education, and I am looking for students personal experiences to inform my study. If you are willing to take part I will ask you to fill out a questionnaire which outlines your experiences with Tourette Syndrome and your experiences in school. No one other than me will have access to any of your personal information, and all names will be removed in the research in order to keep you anonymous.

If you have any further questions before completing the questionnaire please feel free to email me at b1202163@student.bishopg.ac.uk.

I would be truly greatful to hear your experiences, as I want to fully explore any relationship that can be found between TS and education, to see if there’s anything that we can do to to make education better for everyone!

TS Success Stories: Kristin, 17

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Kristin’s Tourette Syndrome Story

Q: What is your name & how old are you?

A: My name is Kristen, I am 17 years old, and I am from Pennsylvania.

Q: How long have you had Tourettes?

A: I was diagnosed with Tourette Syndrome 3 years ago, after my tics suddenly got more severe than they ever were. I had mild tics my whole life, but after a strep infection, they became very severe. I have a dual diagnosis of Tourette Syndrome and PANDAS.

Q: What kind of tics do you have?

A: Like everyone with TS, my tics change all of the time. My most common tics are head shaking, eye blinking, eye rolling, coughing, and moving my arms randomly. Other tics I have had include coprolalia, throat clearing, jumping, rolling around, and stomping. There are honestly too many to count!

Q: Do you have any associated conditions?

A: I have Tourette’s, OCD, anxiety, PANDAS (Pediatric Autoimmune Disorders Associated with Strep Infections), and some sensory problems. Sometimes they have a bigger impact on my life than the TS does!

Q: What’s life like living with TS?

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TS Success Stories: Seth, 29

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Seth’s Story 

Q: What is your name and how old are you?

A: My name is Seth Tucker, I am 29 years old, and I live just outside Washington DC.

Q: How long have you had Tourette Syndrome?

A: I’ve had Tourette’s since I was 7 years old.

Q: What kinds of tics do you have?

A: My most common tics are my throat clearing and facial grimaces. I also have frequent arm/neck/leg movements, and a few tics that cause me to hit myself or bang my head into objects. Some tics come and go and they vary in frequency and severity.

Q: Do you have any associated conditions?

A: I have been diagnosed with OCD, ADHD, anxiety, auditory processing disorder and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?

A: While working I usually don’t have an issue with my Tourette’s. By using CBIT and medication I am able to generally suppress my tics. When I get home most of the tics explode out of me and I’ve broken furniture in the past. I’ve learned to take off my shirt and pants, wrap myself up tightly with a blanket and just let my tics go. It’s much safer for me as I don’t hurt myself as much.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

A: Learn to laugh and let the little things go. Life is too short and awesome to let something bother you for long,

especially if it’s something you can’t control.

Q: What is the hardest thing about living with Tourette Syndrome?

A: For me it’s watching others suffer with it (which is why I got involved with the TSA). While I have a few extreme tics, for the most part it’s the least challenging part of my day.

Q: What do you think other people should know about Tourette Syndrome?

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TS Success Stories: Jackie, 20

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

My story! Jackie’s Life with Tourette Syndrome 

Q: What is your name and how old are you?

A: My name is Jackie, I’m 20 years old, and I’m a Junior in college.

Q: How long have you had Tourette Syndrome?

A: I’ve had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn’t officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?

A: I’ve had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?

A: I have OCD, anxiety, and sensory processing issues.

Q: What is life like for you living with Tourette Syndrome?

A: Living with Tourette’s has it’s challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette’s has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette’s Syndrome Association friends if I didn’t have TS. Tourette’s has also given me confidence. I don’t mind explaining or answering questions and I love educating people about TS. In fact i’m going to be educating 200-400 medical school students about Tourette’s in September! Having Tourette’s is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said “people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life.”

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

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TS Success Stories: Katy, 17

Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at jspershing93@gmail.com. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!

Success Story #1!! Katy’s Life with Tourette’s Syndrome 

Q: What is your name and how old are you?

A: My name is Katy, I’m 17 years old (almost 18!) and I live in Wales in the UK.

Q: How long have you had Tourette Syndrome?

A:I was diagnosed with Tourettes 9 months ago after I suddenly started developing a throat clearing tic.

Q: What kinds of tics do you have?

A: My tics quickly developed to head jerking, clapping, tapping, coprolalia, copropraxia, echolalia, punching my chest, clicking my knuckles and facial grimaces. But I like to think of my signature tic as my squeak (my friends often call me guinea pig now because I squeak so much!)

Q: Do you have any associated conditions?

A: I also have anxiety, panic disorder, OCD and some issues with sensory processing.

Q: What is life like for you living with Tourette Syndrome?

A: Life has been pretty up and down with tourettes especially because I developed it so suddenly and at such a strange time in my life! I’d already become used to life as a teen without tics but then suddenly developing tourettes really turned my life upside down. People around me, like my friends and teachers had to be informed about everything and there have been times that I’ve felt like a burden because everyone has had to adjust to my tics. I felt like I wanted to record with journey and show people what it’s like to live with tourettes, so that’s when I started my YouTube channel ‘LetsTalkTics’. My channel has been such a help to me because I can talk about tourettes openly and it has helped me to come to terms with the fact that I might be living with tourettes for the rest of my life.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?

A: The largest piece of advice that I can give to those who are newly diagnosed with tourettes is that being open about your tourettes is much easier than being closed about it and you’ll end up gaining the best support if you talk to people about what you are going through.

Q: What is the hardest thing about living with Tourette Syndrome?

A: The hardest thing about living with tourettes for me is the swearing tics. I hate saying these horrible words in front of my friends and family and coming to terms with this has been really difficult and I’m still not very comfortable releasing my swearing tics in public.

Q: What do you think other people should know about Tourette Syndrome?

A: I think people need to know that tourettes is not just about tics. It runs so much deeper than that because tourettes can cause physical and emotional pain, tiredness and almost always comes with co-morbid conditions so it’s not always just about the funny movements and sounds.

Q: What are your strengths and what do you like to do?

A: Despite having vocal tics, I absolutely love to compete in public speaking competitions. I always feel so confident and standing on the stage reminds me of my life before tourettes. But it also shows me that tourettes has not limited me in any way.

Q: .What are your goals in life?

A: I’m about to start my last year in school before moving off to university, hopefully to study psychology. I’d love to work in a rehabilitation centre or an inpatient care facility.