Nice to meet you
Hi, I’m Dan. I am 23 years old and I have been living with Tourette’s Syndrome all my life. My tics were first noticeable when I was about 4 or 5 years old. MY parents used to say I would try to swallow flies. I would open my mouth and keep it as wide as I could for a short period of time. Back then no one know it was Tourette’s Syndrome. When I watch old videos of myself growing up I can tell when and what were tics. Growing up was a sure challenge for me, not just because of Tourette’s Syndrome, but also because people in authority did not know it.
If i had a diagnosis at a younger age, the punishments when I was younger would have been reduced by 95%. A good example is when I would be talking in class and then get told to be quiet. To most people this would be easy. Stop talking. For me though it’s the urge that I need to finish my sentence or whatever I needed to say. This was because I wanted to say what I needed to say, due to my Tourette’s Syndrome I had obsessions. Obsessions where I would need to physically make the vibrations in my vocal chords. Sounds confusing? No worries, on this blog I will do my utmost best to explain Tourette’s Syndrome. I will tell you my experiences and include as much scientific and neurological information relating to it as I can.
A few years later
Flash forward to 18, I have finished college. I had first begun to notice my tics getting more and more prominent. Searching for a new career path was my next goal. I have always been interested in technology and wanted to pursue a career in electrical engineering. It is worth mentioning at this point I had been with my then girlfriend for two years. Without her I seriously doubt I would be here, writing this now.
Her name is Nelly and she is the most inspirational woman who cares more than I have ever known anyone to. I’m glad i married her. Anyway, at this point Nelly is also looking for work. She found a job as an early year’s educator at a school in Stamford. This was the same town as the college I was looking at electrical engineering courses for, it could not be more perfect. With great help and support from my parents we moved into a small one bedroom flat and for a while it was going well, or so we thought.
Two weeks into my college course one of my teachers decided to quit. He was replaced by a rather nice man who I seemed to make an impression with as he would let me leave early as I finished my coursework early a lot. We also had a math teacher, who, how can I say, was atrocious. The math teacher went on to be fired for reasons I still never found out yet I am not surprised. Instead of teaching us he would just sit and watch random YouTube videos. When it came to an official test he would read us all out the answers, thus teaching nothing and us learning nothing.
The nice teacher would also go on to leave as well a few weeks later and was replaced by the terrible math teacher’s friend. He shared in the philosophy of becoming a teacher and not actually teaching anything. This meant that I would have to do a lot of self-teaching. Usually this would be fine for me as I enjoy a challenge, yet the greatest challenge of my life was fast approaching.
A literal nightmare
To this day, i am not sure if it is due to the stress of living independently or having to self-teach a lot of complex maths and electrical theory but somehow something clicked. What went from a simple neck crack here or rolling my eyes turned into punching myself in the head and scratching under my arm until the skin was raw. Now, I won’t list of all my tics here right now as that is another blog post’s worth. Keep updated for that as some of them are quite funny and amusing.
I started having to take time off college and take half days. Then I stopped teaching myself stuff for my course as my tics were that intense. The only thing for me to do would be lay on my side and try to sleep, which never came easily. There were points where I would have what I called twitch fits. A twitch fit is where I could not stop ticcing for a single second. I would be in tears and banging my head against the wall trying to stop it.
Doctor visit after doctor visit
During all this I was trying to get a diagnosis as I did not know what was wrong with me. Tourette’s Syndrome and other tic disorders were the words that kept getting thrown around. This didn’t worry me though as all I wanted was a diagnosis and then treatment. I remember going through 4 different specialists and having lots of blood tests and even an MRI scan at one point. Eventually I got the diagnosis and it was Tourette’s Syndrome. This meant that I could start many different treatments and medication trials which I will go into at a later day.
I was 19 when I got diagnosed with Tourette’s Syndrome. Unfortunately had to stop college as it was too much for me to handle with my tics. I looked into what I could do jobwise from home yet due to my location and country there wasn’t much I could do. That is when we looked into disability pay. Which is basically a basic living allowance for people unable to work. I am trying to think of the most polite way to say this and I think just stating facts is the best way so you can get a clear picture. In England and perhaps the rest of the UK, you must answer a series of questions to be declared eligible for the payment.
Tribunal for Tourette’s Syndrome
Once again there will be a greater explanation of that system and what an utter shambles it is. Tourette’s Syndrome is a neurological disorder and I was being asked the questions by a nurse who studied feet. In other words someone not qualified. She said I was fine despite me jumping up and down on my seat and being unable to answer most of the questions or do what she asked. We asked for her to look again, she refused twice and we eventually went to a tribunal. At the tribunal I remember being asked more or less the same questions. I remember my dad and Nelly crying as I was having one of my twitch fits. I was approved for the allowance after that.
Flash forward to today, I am currently writing a blog with the aim to help people my age or younger, and to let them know it will get better, Tourette’s Syndrome is in my life but it isn’t my whole life, I am now very very happily married to the one who supported and stuck with me through it all, Nelly. I could not be happier and hopefully after reading my blogs, you can get some help and advice and will be happy too.
If you enjoyed reading and found any happiness or help from reading please reccomend to your friends and family. To do that press the shiny writing and copy it on facebook.