I have been involved with research over the last 3 years, mainly focusing on OCD. (Obsessive Compulsive Disorder) sharing my lived experience’s of , overseeing up and coming research , regarding ethics and validity, and i have really found it very interesting especially seeing the end results and outcomes.
Alas , recently i took part myself as a person with lived experience of Tourette’s Syndrome via the fantastic charity Tourette’s Action
Here is the outline of the study >
What is the research about?
Theories underlying tic generation in Tourette’s syndrome implicate impairments in attention, and response initiation and inhibition. Response initiation describes how we make decisions and movements, whereas response inhibition describes how we inhibit ourselves from responding or cancel an ongoing movement. Hence, in the context of response inhibition, tics might arise from patients being unable to inhibit their decision or movement. With regards to deficits in attention, which may occur in Tourette’s syndrome, tics may come about because a patient less able to divert their attention away from their urges or tics.
We know that, in the nervous system, there are excitatory and inhibitory mechanisms that occur in balance. In Tourette’s syndrome, it is believed that in brain areas corresponding to movement, there is disruption in this balance, leading to a lack of inhibition and problems controlling movements.
In subjects who do not have Tourette’s syndrome, we see that they delay their response when they might need to stop. In previous studies, we have characterised how the brain’s excitatory and inhibitory mechanisms change when we delay a response. It is unknown whether patients with Tourette’s syndrome exhibit this ability to delay a response or how their brain’s excitatory and inhibitory mechanisms mediate this delay.
Our research is focused on finding out whether attentional and/or inhibitory mechanisms are altered in Tourette’s syndrome, and how these relate to tic severity.
Why are we doing the research?
We are doing this research to explore whether mechanisms of movement initiation and inhibition are altered in Tourette’s syndrome and if so, how the brain’s motor system might explain these changes. As there are two broad types of inhibition (purposeful and automatic) we would like to explore which, if any, of these types of inhibition is changed in Tourette’s syndrome.
As Tourette’s syndrome varies in severity across patients, we would also like to look at how tic severity affects motor initiation and inhibition. Furthermore, Tourette’s syndrome can coexist with obsessive compulsive disorder (OCD) or attention deficit hyperactivity disorder (ADHD). To this end, we would also like to ask whether these coexisting disorders have an impact of attention or movement initiation and inhibition.
By performing this research, we aim to explain how changes in the brain explain the clinical features of Tourette’s syndrome.
What will I have to do?
If you agree to take part in our study, there are three components:
1. Cognitive tasks – For this part of the study you will be asked to complete two computer-based tasks. The first (stop signal task) is a modified reaction time task, which tests a subject’s performance of going and stopping. The second (masked priming task) measures attention and automatic inhibition. This component will be completed at the research centre.
2. Neurophysiology – For this part of the study we will use a technique known as transcranial magnetic stimulation (TMS) which can measure changes in the function of the nervous system controlling movement. During TMS you will be fitted with a recording electrode on the surface of one of your hand muscles. A magnet will be placed near the surface of your head and a magnetic pulse will be delivered, which you will hear as a ‘click’. Soon after, you will feel a slight muscle twitch in your hand. This process is not painful or uncomfortable. During the procedure it is common to experience sensations in the arm or tingling in the face. Again, this is not painful or uncomfortable. This will be performed during the stop signal task and so will be repeated on a number of occasions in the same session. This component will be completed at the research centre.
3. Symptoms – For this part of the study we will ask you to complete some questionnaires about the severity of your tics and urges and about possible symptoms relating to OCD
MY REVIEW IS HERE >
Vishal who is the Researcher , was very helpful from the first point of contact, and any questions or concerns i had were answered really well.
I travelled down to London , and on arrival at University College of London , Institute of neurology , Vishal was there to meet me in reception
We had some great conversations before the research took part , about how my Tourette’s manifests itself , and importantly what the research was hoping to discover , and what will happen during the process of my participation.
Firstly i had to follow left / right arrows on the screen , using the keyboard , and had to try not to press if a red cross was above the arrow , and this involved two tests , one for right and left .
The third test , involved being “wired up” via transcranial magnetic stimulation (TMS) which can measure changes in the function of the nervous system controlling movement , which measured my right hand movements , and at no time was there any discomfort.
THE FINAL TASK !
Involved using the keyboard once a arrow appeared from behind a mass of scribble , you press a for left , L for right . which was over 3 sets of roughly 10 minutes each . Vishal said he would explain afterwards what it’s about ….
Unbeknown to me , before the scribble appeared a arrow came up for 100th of a second ,which your brain recognises , and has an influence on your reaction , which is why when i went to press a , i ended up pressing L , so it’s like a tic response , unable to suppress !!
The day was great , Vishal was brilliant and the whole experience was so worthwhile. It is important to engage with research , it will help us make the future brighter for those who live with Tourette’s Syndrome.
Massive thanks to Tourette’s Action and Dr.Seonaid Anderson ( Dr. Seonaid Anderson) for organising lots of research , please do get involved if you have lived experiences of Tourette’s Syndrome.
Thanks again Vishal , look forwards to the outcomes !