Intended for healthcare professionals

Practice What Your Patient is Thinking

Mobile apps help me manage my tics

BMJ 2019; 366 doi: https://doi.org/10.1136/bmj.l2415 (Published 03 July 2019) Cite this as: BMJ 2019;366:l2415
  1. Thomas Daly
  1. t.g.daly{at}btinternet.com

Thomas Daly describes what it is like to live with Tourette’s syndrome and how he manages his tics

I received a diagnosis of complex tics at the age of 6 and have experienced involuntary tics throughout my life—these include blinking, head shaking, shoulder movements, and vocalisations. My condition made my childhood challenging. Different movements present with varying intensities—for example, I feel the greatest urge for shoulder movements, and satisfaction once the tic has occurred.

A diagnosis of Tourette’s syndrome

As an adult I was diagnosed with Tourette’s syndrome last year. A healthcare professional suggested that I might not want to use the term Tourette’s syndrome when discussing my tics. He was worried that people might have a negative perception. But I had spent my life explaining that I had “parts of me that I could not control” so I was relieved to have a name for this condition when people asked. Sometimes people ask if I swear involuntarily or shout, because that is how Tourette’s syndrome can be portrayed on television. Mostly people are just curious about the condition and do not judge me.

Managing the tics

After my diagnosis it was suggested I should try comprehensive behavioural interventions for tics (CBIT). I received weekly Skype sessions with a professional trained in therapies aimed at tics and Tourette’s syndrome. I focused on exposure and response prevention (ERP), which involves identifying the tics and suppressing them for periods of 15 minutes. Before these sessions I rank the intensity of the tics and the distresscaused by them. During the session the health professionals observe and record the frequency of the tics. Initially, I was only able to suppress the tics for a short time but this encouraged me to try to beat this record in the next session. I also have an appon my mobile phone which provides remote access to this form of treatment. The app counts down from 15 minutes while recording the interval between tics and their intensity. When a tic occurs I press a counter on the screen.

The next step in treatment involves identifying the triggers that provoke my tics and simulating them. Some of my tics become more prevalent when fine motor skills are triggered by tasks such as typing and adjusting clothing. My goal is to complete these tasks without the urge or presence of the associated tics.

Finding other ways to help

I discovered a YouTube channel that features discussions and demonstrations of different tics. When I watch these videos I try to suppress tics that are like mine. I also have access to a relaxation script on my phone, which I use when my tics are distressing. Unlike mainstream mindfulness or relaxation scripts, which encourage the listener to stay still, the script focuses on the terms “calm and relax” and allows me to tic while listening rather than having to try and keep still, which can be distressing and or provoke tics.I then say to myself “calm and relax” during the day when I am ticking.

I have found these innovative forms of treatment fascinating and highly effective in managing my tics. Many treatments are available for people to learn how to manage their tics.

What you need to know

  • The frequency and intensity of tics can be managed through behavioural interventions

  • Many resources are available for patients who are struggling to manage their tics

  • Most treatments for managing tics focus on the urge that precedes the tic, and these can be extremely effective

Education into practice

  • What resources could you provide a patient experiencing tics?

  • What advice could you give someone who is worried about the frequency and intensity of his or her tics?

Footnotes

  • Competing interests: none.

  • Provenance and peer review: commissioned, based on an idea from the author; not externally peer reviewed.

  • Useful information can be found at www.tourettes-action.org.uk/.

  • TD is an occupational therapist and works in a community mental health setting.

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