TOURETTES TAKEOVER- for Tourette Syndrome awareness month.

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As we come towards the end of Tourettes awareness month I have a few more stories to share with you. I conducted short interviews with other ticcers. Please enjoy this different perspective on Tourettes!

AN INTERVIEW WITH ROSS GODDEN

NAME: Ross

AGE: 35

TOWN: Seaford

TICCING SINCE: 17

When were you diagnosed with TS?

I was officially diagnosed with tics first at about 17/18 then around six months later, I was diagnosed with Tourette’s. I had a tic where I would say ‘hi’ in the same voice as Stitch from Disney’s ‘Lilo and Stitch.’
As a child I suffered from learning difficulties, adhd, ocd, behavioural issues, autism, I had extremely bad to no social skills and maintaining relationships wasn’t really an option. I probably still am slightly autistic and suffer badly from anxiety.

*seems like you had a lot on your plate as a young person.

How would you explain Tourettes to other people?

Erm… this is a hard one. I was basically told when I was diagnosed with tics/Tourette’s, that it was a chemical imbalance in the brain of dopamine, ether the body produces to much of it or the gland or whatever is too sensitive to it, which makes the body tic etc.

*the science of it is all very confusing isn’t it!

Sarah has some simple to understand information here…

https://www.tictocktherapy.co.uk


But I think it works more on extreme emotions good and bad. It feels like a curse sometimes with the swearing and mood swings.

It’s hard but it’s never stopped me from doing my professional life, yes I’ve had the odd day or week off here and there but as long as I have stability in my life my Tourette’s is pretty much okay.

*great to hear it doesn’t stop you from living your life! I have big mood swings too!

Do you have a funny tic or one that gets you in trouble?

The main tic/swear that gets me into trouble is that I say *wankers* it’s not great when you get near a load of police officers lol!


A funny one I do is when I say “I’m a little f*****ng tea pot” in a broad Irish accent. HA!

What’s the best treatment- clinical or emotional that has helped with your tic disorder/ TS?

Unfortunately the only thing that kind of works clinically is taking co-codomol and diazepam, but they aren’t actually prescribed for that they are for my back. I take them for my Tourette’s because the side effects make me drowsy and calm me down. 

*it’s good you find these work- I’ve heard other people mention they find these two medications help- maybe speak to your doctor about this if they seem to be helping!

I went to see a specialist in Brighton, but he didn’t really understand or help with anything, he put me on so many different medications over a short period of time, I ended up being depressed and suicidal from the side effects of the medications.

*I’d be interested to know who the specialist was you saw in Brighton!


Non- clinically I try to understand my Tourette’s as separate person to me- I know when my right leg twitches, I’m tired and need to sleep… I do mindfulness to help. But sometimes it’s best to just let my tics out because the more you hold it in the worse they will get.

*I refer to my tics as Patricia- I like to think of my Tourettes as a different person too:)

Do you have any tips for friends or family of ticcers?

Tips for family and friends is basically just accepted us for who we are, support us, listen to us, be there when we have bad days and not treat us like freaks.

*never feel like you are a freak! this is great advice.

Thankyou so much Ross for giving an insight into Tourettes syndrome with co-occurring conditions.

TOURETTES TAKEOVER- for Tourettes Syndrome awareness month.

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NAME: BETH GREENWOOD

AGE: 20

TOWN: West Yorkshire.

TICCING SINCE: late teens

WHEN WERE YOU DIAGNOSED?

I was diagnosed at 17 but suspected Tourette’s for about two year before. The signs had always been there. The constant coughing, loud sneezes when I didn’t need to sneeze and eye rolling where all there when I was young and my tics only became more frequent and with a larger variety from there. I’m surprised I didn’t suspect it sooner. After many, many appointments and tests I was told at one appointment I had a tic disorder. I later got a letter confirming it was Tourette Syndrome. 

HOW WOULD YOU EXPLAIN TOURETTES TO OTHER PEOPLE?

My brain sometimes acts up and makes me do movements and sounds I don’t choose to do – this is the explanation I use for the kids at work. For adults I usually just say I have Tourettes, it’s a tic, I can’t control it or something to that affect. 

DO YOU HAVE ANY TICS THAT ARE FUNNY OR GET YOU INTO TROUBLE?

Well, I have one that does both: One of my tics is that, I bark like a dog. Sometimes I think it’s funny and the timing can be comedic. Other times when I am walking around barking like a dog I can get the whole street of dogs I am walking on barking. This annoys the owners. Usually when I explain they apologise and understand but some do not understand and continue to rant at me, or worse they say they have Tourette’s ‘sometimes’. 

*I bet this can be quite comedic but also stressful- people are often pretty unaware of the realities of TS!

WHAT’S THE BEST TREATMENT – CLINICAL OR EMOTIONAL – THAT HAS HELPED WITH YOUR TIC DISORDER OR TOURETTES?

I’d like to say my tablets (aripiprazole and occasionally diazepam), but the best treatment I have found is cross stitch and sewing in general. It almost stops my tics and occasionally stops them completely. I think this is due to the amount of concentration it takes but also due to the relaxing manner of it. 

*I find tasks that make me concentrate help too!

DO YOU HAVE ANY TIPS FOR FAMILY MEMBERS OR FRIENDS OF TICCERS?

Yes for those with newly diagnosed ticcers it may not get better for them but it will get easier. By this I mean they develop coping mechanisms and it gets easier to explain about their tics each time as you/they develop a script. Also don’t react to each and every tic – it’s exhausting and you’ll get used to the ones that may make you jump though they’ll still sometimes catch you off guard. And last one don’t let other people’s ignorance get you down. It’s their problem not yours. 

THANKYOU SO MUCH FOR ANSWERING MY QUESTIONS FOR TOURETTES SYNDROME AWARENESS MONTH:)

Lauren xx

TOURETTES TAKEOVER- for TS awareness month.

Tourettes Syndrome, Uncategorized

This month is Tourettes Syndrome awareness month. Tourettes effects everyone very differently. Tourettes is not just swearing. Many people have simple tics which can be suppressed well, while others have more complex or severe TS which can affect daily life.

The following few posts will be with a variety of people who have tics, a diagnosis of Tourettes syndrome or a Tic disorder. I have decided to conduct a variety of short interviews asking the same questions to show just how tics can affect life. No one knows better than a ticcer themselves to offer the best advice and words of wisdom.

An interview by LAUREN PERRY with DANIEL JONES

Your Tourettes stories.

NAME: Daniel P Jones

AGE: 24

TOWN: Berkshire

TICCING SINCE: In school- 2009

WHEN WERE YOU DIAGNOSED?

I was diagnosed 11 years ago this May, way back in 2009. I remember going back into school after the diagnosis appointment and sitting in my class again, not really understanding what had just happened or what any of the diagnosis actually meant!

HOW WOULD YOU EXPLAIN TOURETTES TO OTHER PEOPLE?

It’s such a hard thing to explain to somebody, but generally I would say that Tourettes Syndrome is a neurological disorder characterised by involuntary movements or vocalisations called tics. However, it’s obviously a lot more than just that – I think the most important thing to do when explaining it is to highlight just how individualised TS is. Tourettes looks different in everybody, and sadly a lot of people don’t realise!

DO YOU HAVE ANY FUNNY TICS OR ONE THAT GETS YOU INTO TROUBLE?

One tic that I have that can be funny is that, occasionally I echo words or gestures that people say or make. I remember once I was watching a performance of ‘the Crucible’ and I couldn’t help myself but say (rather loudly) “she’s a witch”! Me and my friend spent the entire rest of the performance trying not to laugh about it!

A tic that has gotten me into trouble is, what I like to call ‘the stank face’. It’s basically that really disapproving look you give something that you think is disgusting, or when somebody outright lies to your face… you know the kind? That’s definitely gotten me into trouble before!

*I find sitting in big rooms like cinemas, lectures and theatres really bring on my tics too!*

WHAT’S THE BEST TREATMENT EITHER CLINICAL OR EMOTIONAL – THAT HAS HELPED WITH YOUR TICS?

I’ve tried various emotional / behavioural treatments without any luck really. I’m quite hesitant to try any medications for multiple reasons. Therefore currently I am not receiving any treatment as I haven’t found any that work, or that I’d be comfortable trying due to the possible side effects. 

*Side effects of medication is something that is rarely spoken about*

DO YOU HAVE ANY TIPS FOR FAMILY MEMBERS OR FRIENDS OF TICCERS?

My main tip would be to never tell somebody with Tourettes to stop or ‘shh’ if they are ticcing! For everybody I know who I’ve spoken to, including myself, this actually triggers us to tic a lot more. Don’t tell people off for the tics they have, as I can guarantee you it’s more frustrating for the person with tourettes than it is for you!

*I totally agree with you here- if I get ‘shhed’ or someone says ‘i can’t hear be quiet’, I find my tics become obnoxiously loud! It’s pretty funny to me;)

Thank you for taking the time to answer these questions for Tourettes Syndrome awareness month.

As always there will be a donation to Tourettes Action as the chosen charity for these series of blog posts. My Grandma has been a little star and helped raise money for the 2.6 challenge- more information to come soon:)