Tourette's Syndrome Awareness Day

Hello everyone! Today is Tourette’s Syndrome Awareness Day, so here is a post to create awareness with some information, links, and an opportunity to engage with others.

Tourette’s Syndrome is a neurological condition that causes someone to make involuntary movements or noises, also called tics. Tics can come in many different forms, you could experience motor ticks, for example neck or head jerks, kicking, and arm or leg movements. You could also experience vocal tics, which can include stuttering, grunting, and repeating words, to name a few. Tics are not normally harmful, but they can be painful to themselves or others due to unexpected movements. Some people are able to suppress tics, but this can be tyring and difficult to control. Tics can also become worse when triggered by for example stress or anxiety, therefore identifying ‘triggers’ can be useful to manage tics.

Unfortunately, there is no cure for Tourette’s, but there are ways recommended by healthcare services that can help, such as behavioural therapy, treating associated health conditions, and medicine. Despite these treatments, many symptoms of Tourette’s are difficult to ‘cure’, so having or caring for someone with Tourette’s syndrome can be quite challenging. Tourette’s can also be associated with other disorders, such as OCD or ADHD, so it is sometimes hard to identify and diagnose it.

If you have Tourette’s, know someone, or are caring for someone who has Tourette’s Syndrome, feel free to share your story and engage with this post. It can be quite difficult, but there will be others on the forum that might be able to relate and share some tips.

NHS Tourette’s Syndrome page:

S has Tourette’s. His tics are worse when he is tired, too hot, anxious, can’t work out what an internal sensation is, has IBS symptoms, needs to o/b, his hayfever is flaring.

He has motor and/or vocal tics. The tics annoy him when they interfere with everyday life e.g it can be very hard to eat when your arm keeps jerking etc.

If his tics have been very strong he can end up with a painful shoulder etc

His vocal tics can be very loud and continuous. They can be breathy sounds, sniffy sounds, tongue sounds or repetitive sounds/words.

It can be hard to relax for him and I when his tics are bad.

He fixes one arm behind his back when on walks if it’s ticcing a lot or fixes it by folding his arm and tucking his hand behind his other elbow.

He tried PRN meds when it was at its worst but he didn’t like the side effects.