So being as this blog is supposed to be primarily about my Tourette’s, I thought I might give some idea of how it affects me. This is by no means an exhaustive description and I’ll probably add to it or change it over time as the disorder is constantly changing and evolving.
Firstly a quick intro on Tourette syndrome and tics. Tourette syndrome was first documented in depth by a french man called “Georges Albert Édouard Brutus Gilles de la Tourette” (mouthful or what!), which is there the name “Gilles de la Tourette Syndrome” originates. You can probably see why most of us shorten it to Tourettes, or just TS!
The disorder is rarely seen alone and is seen alongside other disorders such as OCD, ADHD and a great many others. It is characterised by tics, which are, to quote wikipedia:
“…sudden, repetitive, nonrhythmic motor movement or vocalization involving discrete muscle groups.”
Tics are pretty much the central component of Tourette’s and they come in two main flavours – motor and phonic. Motor tics are the physical manifestation (movements, tensing etc) and phonic tics are, well, phonic. Both can be either simple or complex. Every Tourette’s sufferer has their own group of tics and you will never find two identical cases, according to most literature on the subject.
I would like to stress at this point that not all sufferers experience “coprolalia”, the utterance of taboo or swear words. It is the most widely known symptom but also one of the rarer – with estimates of around only 10% of people experiencing it. The “swearing disorder” stereotype is toxic and should not be encouraged!
During my calm times I can usually suppress mine a little more and there are times when I can keep hold of things to the point where you can barely tell that I have it. During those times I can usually hide and suppress them a little more effectively. Some examples of these are:
- Head Bobbing
- Neck tics (always present)
- Skipping steps
- Scrunching my eyes
- Over-extending (Dystonic) movements – for example twisting my neck far past the point where it “wants” to stop
- Cracking my teeth together and clamping my jaw shut and grinding my teeth
As for the phonic tics – I do have “coprolalia” – the well known swearing component of Tourette’s. During my calm patches I can often react quickly enough to muffle them into a sleeve or clamp my hand or arm across my mouth. Some examples are:
- Random words like “monkeys”, “baguette” etc
- “Relational” tics – these could be urges or impulses not tics, not sure. But they can be triggered by anything from seeing a large bum “Fat ass!” or once seeing a polar bear on a carnival float “I am a Polar Bear!”
- Whistling – anything from a single tone, to a wolf whistle, to a cheerful little ditty (not so cheerful after the hundredth time, trust me)
- Coughing/hacking sounds
- Repeating single syllable sounds over and over such as “tuh” or “muh”
Then we get times like now (as of writing this), here is a little sample of some of the extra delights. Along with all of the above going through the roof, some of the worst things are:
- Hyper-extension – this is a dystonic tic, my entire body will arch backwards. I have experienced this to a degree in the past but it has been much worse recently – as a result I have to wear a helmet.
- Slamming backwards or forwards (also part of the helmet requirement)
- Headbutting movements
- Increased violence in neck tics
- “Axial Drops” – I drop heavily to my knees when walking. This combined with the hyper-extension means that I cannot walk
- Hitting myself in the chest and neck
- Lashing out with my arms
- Tucking my knees up and hitting them into my shoulders (also when I am stood with the help of friends this takes the form of a knee-tucking jump – although that could be a separate tic, I am not sure)
- Bending/flexing various body parts to the point where it feels like they will break
- Hitting myself in the forehead
- Massively increased vocal tics
It’s hard to try and list everything in one go, so I will probably add to this page and change things around as I get my thoughts in order and when/if this blog evolves.