Stimulating research to change patients lives
Tics are known as uncontrollable yet there is now a device which is in the early stages of development which could give back control to people with tics.
At recent conferences researchers have shown videos of people with Tourette Syndrome, which is categorized by involuntary movements and sounds receiving mild electrical stimulation of the wrist. The videos are impressive. It shows someone with tics moving and making sounds pretty much continually. Just about all of these sounds and movements stop in a moment when the stimulation is switched on. Every time I see this video I take my eyes off the screen to look at the audience to see the same ripple of reaction going through them as they see the immediate and profound effect of the stimulation for tics. It appears miraculous!
In the videos you can see the confusion on the people’s faces turning into overwhelm and emotion as they sit with drastically fewer or no tics at all for the first time that many of them can remember. It makes quite an impression on the person experiencing it and those watching.
The constant tics are something that people with Tourette Syndrome often recount — ‘if only I could have a break from the repetition, the constant noise and movement my body makes, the pain’…..
Could this technique be the answer? It doesn’t involve uncomfortable conscious suppression of tics. It doesn’t involve any medication with unpleasant side effects. It doesn’t involve invasive operations on the brain or injections of any kind. Flip a switch and the effect is immediate and from the published research so far it seems to be safe and effective. It even seems to have an effect on some of the challenging co-occurring conditions which come along with tics such as OCD and ADHD as well as the physical urge which occurs before a tic happens which many people describe as very unpleasant.
300,000 people in the UK have Tourette Syndrome (TS) — it’s about 1% of the population. One of the battles of patient advocates and support associations is to get people to understand that TS isn’t rare. With the same prevalence as autism but much less attention, TS is something that is crying out for more attention to increase understanding by the public. More adults are now coming forward to say that they have TS and a more cohesive patient community coming together is using its voice in current times. The more and more advocates that stand up revealing they have TS, the larger and more political a voice the patient associations become, the more researchers think of inventive ways to help support people with the condition moves this condition forward into the limelight.
One of these researchers is Professor Stephen Jackson from the University of Nottingham and a founding director of Neurotherapeutics Ltd who are involved in creating a wearable wrist device for suppressing the urge-to-tic that can be used outside of the laboratory . When asked about getting the wristwatch-like device on to the market for patients to access he is all for it and financial gain is not his motivation for his efforts in bringing this to market.
Stephen says ‘We want individuals with tic conditions to have access to a safe and effective wearable therapeutic device that can be used outside of the clinic and which will give them increased control over their tics, and we want this to be available as soon as possible. However, before we can move to manufacturing such a device, we need to convince investors that there is a large community of people with tic disorders who would want to use such a device, and because of a lack of knowledge about tic disorders like TS, this is proving difficult. This is where people with lived experience of tic conditions can help us. ’
The research is based on a very simple goal of providing a way of helping people to control their tics when they choose to. Behind the scenes of course there is complex neurological and physiological research with state-of-the-art equipment to measure the effects of the stimulation. People don’t just stop ticcing because they are distracted by the stimulation and the effects don’t seem to wear off with time, but remain effective. Other exciting applications of this technique is that it may improve therapy outcomes and even promote new learning and enhance memory. A clinical trial involving 135 participants is underway using the new prototype device and the results are promising.
The idea behind the research is simple and it’s a great topic to discuss as we have just completed Tourette Syndrome Awareness month. This wristwatch device is capable of stopping people’s tics but it needs support to get it to market. It’s a great idea and it works. But how can we help the researchers get this on to the market and on to the wrists of people who need and want it? There is now a need to convince investors that TS isn’t rare and that there are patients who want this device. Let’s use the current wave of interest in TS to help raise this awareness in the eyes of investors and developers by showing them that patients want to have the choice of using a device like this.
How? It is simple — all people have to do is to sign up and register their interest on the Neupulse website. The more people who sign up the more evidence this provides that there is demand from the TS community to have something like this available to them.
Another way of helping is that people with a tic condition, or people, caring for a child with a tic condition can complete the very short (5 questions) questionnaire here.
This will help provide evidence of how many people would be likely to want to obtain the device to convince potential funders that there are people who would use the device — if they understand the demand is there, then funding is more likely!