Woman’s Openness About Tourette Syndrome Helps Others, and Herself
(Lara Mossa, Feb. 1, 2020)
Living with Tourette syndrome has been a struggle for Rochelle Bono. But she took the hardship and turned it into a meaningful way to help people.
“It’s something that did take away a lot of things from my life but gave me a better perspective of how the world works, and it gave me compassion and the ability to see beyond what’s there,” said Bono, a volunteer for a national Tourette organization. “It gave me the ability to truly help people and the world. I care very deeply.
Bono, 37, who lives in the Detroit area, was diagnosed in 1990 when she was 8 years old. Symptoms she had were a lot of head jerking, blinking her eyes, facial grimaces, crossed eyes, shrugging her shoulders and vocal tics that included clearing her throat, sniffling, clicking her tongue, barking like a dog and bird whistles. As often is the case, she had behavioral disturbances too.
“When I think back about when I was a kid, other symptoms I had were sleep disturbances,” she said. “I was very angry. I was an angry kid with emotional outbursts. That’s very common in children with Tourette to have anger outbursts.”
Tourette syndrome is a neurodevelopment disorder that onsets during childhood development, she explained. Pinpointed to a specific gene, it causes disfunction in the form of vocal and physical tics that the person cannot control. Typically, symptoms arise between the ages of 5 and 7. Motor and vocal tics that range from grunting and coughing to animal noises or swear words must last one year before a child is diagnosed.
It is a lifelong condition with no cure. While the ailment can be hereditary – Bono’s father has the disorder – it is not necessarily passed down to children. Treatment is different for each person but often includes medication, diet and exercise and cognitive behavioral intervention for tics, which is a form of physical therapy that teaches patients how to recognize the onset of a tic and help manage it.
As a child, Bono met regularly with a neurologist and took medication. When she turned 17, she could legally ween herself off the medicine and wanted to see what it felt like to have Tourette. To combat the symptoms, she started changing her diet and exercising a lot.
“I had to find a way to deal with the energy,” she said.
While she had been on 40 medications through the years, she has found that medical marijuana works best, she said. In addition, she uses spirituality and sees a team of doctors including regular primary care, neurologist, therapist and physical therapist. Having a good support system is one of the keys to feeling better, she said.
As a result of the syndrome, Bono experienced low self-confidence, suicidal tendencies, loneliness and isolation. This led to long-term homelessness, she said, and loss of jobs. Having Tourette syndrome makes it difficult to go to school, work or have a family. While she is single, she has two children and lost the ability to take care of her 16-year-old daughter.
“My family has to take care of her,” she said. “She lives with her dad now. I’ve always been involved in her life, but it took away my ability to be a full-time parent. That’s one of the grim things that can result from it.”
Besides that, Bono suffers from long-term injuries as a result of her physical tics. One of her vertebrae is damaged; she gets chronic migraines; she has tears throughout her muscles, tendinitis and carpal tunnel.
While she has been on disability since 2018, Bono managed to work in minimum-wage jobs in food service, customer service and cashiering.
“It’s very difficult for someone with Tourette to get gainful employment or go to college,” she said. “There are jobs I’d like to do or have the desire to do, and I know I’m very smart, but it’s difficult finding accommodations for me.”
So, instead, Bono volunteers for the Tourette Association of America. She has been an advocate for the New York-based organization for four years and is the only one trained in Michigan to work as an adult support group leader and information and referral service specialist.
Her goal is to create awareness and educate people – including families of those diagnosed – about the disease. Since receiving her certification this month, she has been able to assist families in finding doctors, therapies and support groups. She plans fund-raising events and community programs and runs informational booths.
The nonprofit group is looking for more people to go through the training in Michigan.
“They need people who have passion, the time, the heart to take on this big endeavor,” she said. “Lack of awareness is what we’re trying to turn around.
In addition, she aspires to gain community support. Last year, she led an effort to have a resolution passed in Ferndale to raise awareness. The national month for Tourette syndrome awareness is May 15 through June 15.
Some other information Bono shared it that one out of every 100 school-age children have some kind of tic disorder. An estimated 50 percent of adults with Tourette syndrome go undiagnosed, and 90 percent of people with Tourette have co-occurring conditions that include obsessive compulsive disorder, sleep issues, anger and attention deficit hyperactivity disorder.
For more information, go to the Tourette Association of America website, www.tourette.org, or the Tourette Association of America Facebook page at www.facebook.com/touretteassociation. There also is a Tourette Association of America YouTube Channel.
Anyone with questions or interested in volunteering should contact Bono at MichiganTouretteConnect@gmail.com or Joseph Grappone, who manages all of the United States chapter and support groups, at (718) 224-2999.