Nicky Bohm said many people have a misconception about Tourette syndrome.
“It’s not all about swearing (called coprolalia), tics can be every day ‘typical’ actions that others do,” she said. “It’s not contagious, but it is very common – one in every 100 people qualify for a diagnosis, but 50 percent go undiagnosed.”
Bohm, from Columbia Heights, was diagnosed when she was 25, but she’s been having symptoms since she was five.
“My grandmother figured it out after watching the movie, ‘Front of the Classroom,’” she said. “I went to the doctor and was diagnosed. Some of my tics are eye blinking, making a beeping sound, grunting, and neck jerking.”
Through National Tourette Syndrome Awareness Month—May 15 to June 15—the Tourette Syndrome Association (TSA) aims to raise positive awareness about TS, address common misconceptions, and increase understanding, tolerance, and acceptance for individuals and families living with TS.
“I have been to many stores where people don’t understand Tourette (laughing, staring, and name calling),” Bohm said. “But once I get to know people they understand the disability, they remember who I am and what Tourette is all about.”
TS is part of a spectrum of hereditary, childhood-onset, neurodevelopmental conditions referred to as Tic Disorders, according to the TSA. These conditions affect both children and adults, causing them to make sudden, uncontrollable movements and/or sounds called tics (e.g. head bobbing, arm jerking, shoulder shrugging, and grunting).
“Having Tourette has brought its challenges but has brought many joys because I’m a part of such a great community,” Bohm said. “Having tics has helped me understand that education is key in order to unlock misunderstandings and forgiving others for their misunderstanding and unkindness towards us.”
For a medical diagnosis, someone must have two motor and one vocal tic that last at least 12 months. Symptoms can range from mild to severe and in some cases can be self-injurious, debilitating, and can markedly reduce quality of life, according to the TSA. While some treatments are available for people with TS and other tic disorders, approaches to care are inconsistent, medications are often ineffective and there is no cure.
Now 34, Bohm is a special education teacher/behavior specialist at the Cyber Village Academy (she’s been working in education since 1999) and is the mother of a two-month-old daughter. She enjoys golfing, writing poems, hanging with her nephews, drag racing, her animals (birds, lizards, and dogs) and spending time with her husband and family.
Bohm’s service dog, Abe, helps her in a variety of ways. “One is for balance because my tics throw me off balance,” she said. “I have tics that look like seizures so when I drop to the ground Abe will go get help if he is unable to prevent me from falling. Abe will cut in front of me and catch me before I fall or guides me down to the floor. He does deep pressure when the tics are bad and medical alerts for other reasons.”
For anyone who suspects they may have TS, Bohm suggests tracking symptoms, finding resources from tourette.org, talking to a neurologist, and finding local support (most do not require an official diagnosis).
“In Minnesota we have a Twin Cities family support group, we also have support groups in Mankato,” she said. “We have a Facebook group (private and vetted), we also have a MN Chapter page that lists our events. Our board chapter president offers help via phone and email. I personally run the Twin Cities support group. There is also a family camp in August up in Brainerd, Minnesota.”
For those who already know they have TS, Bohm suggests finding local and national support, learning the disorder from qualified sources, and learning to expect the unexpected.
“Education is key. Don’t be afraid to share and ask for help when tics are bad,” she said.
CBIT (Comprehensive Behavioral Intervention for Tics) is the first line of treatment, Bohm said. “There is no medication directly made for TS, but some people find benefits from meds that are on the market,” she added. “This is where a qualified doctor can help you find the right one and dose.”
“Along with the struggles that come with TS, many people with TS are gifted in some way, more empathic and caring,” she said. “People with TS have a lot to offer. In my case I am really good at seeing the big picture, reacting to situations more quickly–I have a really fast reaction time–and the disorder has helped me learn to advocate to others and have empathy towards others, which helps me as a teacher and behavior specialist.”
Below: Nicky Bohm and Abe (provided photo)