I stood and watched as the woman in front of me, who I had known for some years, became completely still. Something I had never seen her do. I had never seen her be still. It was mesmerizing to see this person I had only ever seen in constant motion, become completely still and silent. I watched her closely to see if any movements or sounds broke through from this newly motionless person in front of me.
These movements and sounds were something that had dominated Natalie’s* life for so many years it was difficult for her to remember a time without tics. These sounds and movements are known as tics. They are part of the neurological condition known as Tourette Syndrome (TS). Very quickly let’s deal with some of the common misconceptions about this condition – it’s not rare and has the same prevalence as autism and childhood epilepsy. Many people think of TS as ‘the swearing disease’ in fact TS doesn’t involve swearing or insults as part of the diagnostic classification. In reality, around 10-15% of people with TS have this particular tic called coprolalia. Another important point is that tics, movements and sounds, are involuntary and therefore generally uncontrollable, not behavioural or someone ‘behaving badly’, as often assumed.
So why did my friend Natalie become so completely still in front of my eyes? She was the first person in Belgium to try a new device worn on the wrist which sends an electrical impulse from the median nerve in the arm to the brain and has the effect of greatly reducing or stopping tics when the stimulation setting is switched on. This device, which is a prototype, is still under research trials and was being discussed at the annual conference of the European Society for the Study of Tourette Syndrome which was held in Brussels7-9th June 2023. At this event international researchers come together to share new research into the diagnosis, treatment and management of TS.
A wide smile breaks out over Natalie’s face. ‘I feel so relaxed and can definitely feel the stimulation but its not painful or unpleasant’. Sitting beside her husband, who is also smiling, she is clearly feeling emotion at a result which had never been achieved by medication or therapy in the years since she was diagnosed with TS as a child. The developers of the device from a UK company called Neupulse explain the stimulation will switch on and off during this short trial. We don’t need to be told when the stimulation sessions ends as we see tics appear again.
Natalie can quickly appreciate the uses a device like this could have, perhaps she would use it at work I suggest? ‘No, I would wear it when out at a restaurant or with my family. I would tic freely when at home but I can imagine using it out in public’. Interestingly Natalie also reports that not just the actual tics themselves have gone but the urge to do them has also gone. This building sensation before a tic is known as the premonitory urge, described as a building feeling of discomfort, like an itch that we only get relief from if we scratch, which also disappears during the stimulation.
When Professor Stephen Jackson, the researcher behind the science which led to the development of the device, speaks during his presentation during the conference he mentions that people able to use the device at home also report when and how they like to use it. One person reported using the device for 20 minutes before bed which greatly helped them reduce their tics to a point where they could fall asleep.
As the trial ends Natalie continues to feel some continuing effects of the device although it is no longer on her wrist. Natalie jokes with the researchers about taking one of the devices on the table home with her. Unfortunately this is not possible in Belgium for the moment. There is a continuing trial in the UK currently underway where participants use the device at home. This may be possible in Belgium but the developers of the device don’t seem hopeful. ‘There is so much regulatory work to be done to get a trial underway in a country’, explains Paul Cable of Neupulse. ‘It can be a long and expensive process to get the device through the regulatory process in each country and would need backing from people in Belgium’.
The device will be available on the market it is estimated in 2026. ‘That is such a long wait! says Natalie. She had previously considered an operation to implant electrodes in her brain called deep brain stimulation but despite being a medical candidate for this operation her mutuelle health insurance in Belgium would not cover the costs. I am concerned having tried it she may now feel frustrated in having found something that helps her tics but that she can’t access this device for the moment.
I walk Natalie and her husband out of the venue to their car and thank them for coming and having the courage to come and try something so cutting edge. Their faces remain vibrant and happy and I know there will belong conversations between them on the car ride home. I return to the venue but I will never forget this experience and feel so happy that through my work and connections I may be able to support people in Belgium with TS in the future.
*Natalie – pseudonym used.