Tracking Tics

Martijn de Groot has had tics since he was a child. Mostly, he suppressed them and they were rarely noticed. A few years ago, concerned that they might be getting worse, he started tracking them by pressing a small one-button tracker in his pocket that recorded a timestamp when a tic came. The first months of data surprised him. He had many more tics than he thought. After consulting with his primary doctor, who referred him to a specialist, he was diagnosed with Tourette’s syndrome. This came as a shock. In this podcast about a Show & Tell talk which appears in The Quantified Self: Learning to Observe, Martijn discusses some of the most interesting things he learned from making 5,933 observations over 330 days: before, during, and after therapy for Tourette’s syndrome.

Joining me: Martijn de Groot, Radboud University Medical Center; Sara Riggare, Uppsala University; Thomas Blomseth Christiansen, cofounder of TOTTI Labs; and Jakob Eg Larsen, Technical University of Denmark.

You can see Martijn’s data visualizations here: A single-case (N-of-1) study of Tourette syndrome using personal science to support self-care

Martijn de Groot: “When I recorded them for a couple of months and I looked at the data, I was also shocked by the number of tics that I recorded.”

Jakob Eg Larsen: “Because you have to do this physical thing of tracking, which means you have to have a small moment of awareness which may lead to a small reflection, which may lead to some learnings.”

Thomas Blomseth Christiansen: “You start tracking and you have this steep learning curve. You learn a lot and then it kind of levels off, and then it doesn’t make that much sense to keep on tracking.”

Sara Riggare: “I’ve talked to so many fellow patients with different kinds of degenerative conditions saying that they don’t want to track — I’m just tracking something that I get less well at, I’m tracking my decline.”

For more on personal science and the Quantified Self community, visit the Personal Science Research Group and the QS Show & Tell archive. Martijn’s project, along with many other stories and specific tips on tracking subjectively noticeable phenomena, appears in The Quantified Self: Learning to Observe, which you can pre-order now. Although the official release date is Oct. 6, pre-orders are super-important for convincing booksellers that this topic matters, so if you think you will want to own a copy, please help us spread the message by ordering early.