Research left me feeling awesome and unique!

Posted Mon 3rd Jul 2017 at 11:09
by Clair Beckett

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Clair Beckett gives her account of being a research participant for a study looking at 'attentional and inhibitory mechanisms in Tourette syndrome.'

Hello! My name is Clair Beckett, I am 30 years old, I am a Yoga teacher, and Community Dance artist based in Plymouth.  In May 2017 I was diagnosed with Tourette Syndrome, it was a surprise, but this diagnosis has already begun to lead me down life changing and exciting pathways.  Since finding out my diagnosis, I have been setting out to learn more about TS and to find ways to spread awareness of this misrepresented condition.

About a month ago I noticed a post on the TA website calling out for people with TS to be a part of a research project based in London. The research was part of a study by Leanne Hockey at University College London (UCL) - the study is looking at Attentional and inhibitory mechanisms in Tourette syndrome - looking at the role of attention and inhibitory mechanisms in tic generation and management.

I got in touch straight away as I felt this would be a really fantastic opportunity to be a part of something that will educate me more on my condition.  It felt like a positive step in the right direction, and by putting myself forward to be researched I am now part of something that not only impacts me but will benefit others in the development of TS awareness. It may even have a positive medical impact on the future generations of people with TS.

I was very nervous when I arrived as I had no idea what to expect...but Leanne was lovely and we spent lots of time getting to know each other which put me at ease.  We spoke a lot about our favourite TV programmes, and ambitions! Leanne also took all of the tests herself to show me that they were safe and fun to take part in!

The research involved questionnaires about my condition, computer-based cognitive tasks and non-invasive transcranial magnetic stimulation (TMS) to measure motor system activity. TMS was super interesting as it is also used as a form of treatment. It made my muscles of my hand twitch and we spoke about voluntary and involuntary movement.  She told me that when people with TS make conscious decisions on movement (e.g. taking a yoga class) it can cancel out the involuntary! This I found fascinating!

It was such a huge relief to finally talk face to face with, and work with someone that has such an interest and knowledge of TS.  Leanne is someone who really seems to care about the future of people with TS.  She hoped that her research might be able to shed more light on the condition for doctors and GPs, and how her research will be shared at conferences and events to educate more people.  

I hope that through this research people will get a diagnosis quicker and more doctors will have a better understanding! If you want to take part in research and you are unsure, all I can say is that it is so much fun and so meaningful.  You leave feeling pretty awesome and unique...it proved to me that I can do positive things with my TS and only more adventures are going to come my way!  Do get in touch with me if you are considering being part of a study- I am happy to talk it through with you please email me - Clair.

If you are interested in this or any other research studies or wish to sign up to be part of the Tourettes Action research participant registry then please contact Seonaid Anderson, TA research manager. 

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