Tourette Syndrome (TS) has been the subject of misinformation and jokes. In college, I read a humor article in our newspaper. The writer described yelling expletives at someone who beat her to a parking space in a crowded parking lot only to later find out that person was attending the same funeral as she was. When she saw the man she said, “I’m sorry, I have Tourette’s.” Being a college student who had no idea what suffering can occur as a result of Tourette Syndrome (TS), I laughed at the time. Fast forward to my career and having treated many children and families that have been affected by TS and I now realize it’s no laughing matter.
Just like the misnomer that dyslexia means people reverse numbers and letters (which can be a part of dyslexia but really it’s a problem with phonological processing), Tourette Syndrome is very misunderstood. To be diagnosed with TS, an individual has to have both motor and vocal tics. A tic is an uncontrolled, sudden repetitive movement or sound. An example of a vocal tic is clearing one’s throat or abruptly saying a word out loud. Motor tics involve movements like quickly shrugging shoulders involuntarily or moving one’s mouth. Blinking excessively can even be a tic. And sometimes it’s hard to tease out what is a tic and what isn’t. For example, someone with allergies may sniffle quite a bit whereas someone with tics might sniffle multiple times with no trigger.
According to Tourette.org, about 1% of children have tics and/or TS. Sometimes tics are transient- meaning they will go away. However, some persist into adulthood. Many people with TS are also diagnosed with ADHD and OCD. Individuals with Tics often go into fight or flight mode and have rages. Just as the brain can’t “gate” impulses effectively, there may be a difference in individuals’ with TS in their ability to control their sympathetic nervous response. This is where TouchPoints may be able to help individuals with TS.
I spoke with Dr. Gregory Sambuchi, Director of Neurology and Medical Director of Mount St. Mary’s Hospital’s Stroke Program in New York, about his experience with his daughter Olivia, who has TS. Olivia has been using TouchPoints for a few months and has experienced a significant reduction in anxiety and tics. Dr. Sambuchi’s first comment to me was “You’re on to something here!” After sharing TouchPoints with others with TS at a bowling fundraiser, he and other parents were astounded to watch a young girl with TS rage after only hitting one pin. “I thought, let’s see if TouchPoints could help” so Dr. Sambuchi allowed her to try the TouchPoints. Because TouchPoints can be worn on the body without interfering with activities, the girl stood up to bowl with them on. Those watching held their breath- bracing for a possible meltdown- She pulled back the bowling ball, released, and…..gutter ball. She then turned around, sat down, and has no emotional reaction. “I couldn’t believe it,” said Dr. Sambuchi. “She didn’t go into fight or flight. It made me think of how Olivia’s life would have been different if we had TouchPoints for her while she was growing up.” Dr. Sambuchi is now a friend of mine and a superfan, and we look forward to more stories of how TouchPoints help those with any condition.