Nancy McDonald is a self-described quiet worker. Quiet, maybe, but not passive. So when her son Ryan was diagnosed with Tourette Syndrome more than 20 years ago, McDonald set about to learn all she could about the condition. And she didn’t stop there. For the past 13 years, she’s been actively involved with Tourette Syndrome Association of Ohio, sharing her knowledge with parents and working to raise awareness in the public at large.
Tourette Syndrome is a neurological disorder, often incorrectly labeled as a mental illness, characterized by tics that span a continuum from mild, such as blinking, coughing, shoulder shrugging, or facial grimacing, to very severe, such as jumping, self-injury, and coprolalia— uttering socially inappropriately words.
“That’s the thing with Tourette Syndrome. It’s so broad, so variable from one case to another; there’s no ‘typical’ case of TS,” says McDonald, a 1976 Edgecliff graduate who has worked as a secretary at the University for the past six years and currently splits her time between the department of nursing, the department of health services administration and institutional review board. “At one end of the spectrum you’ve got so mild it might be called transient tics disorder. Then you have the very severe where people have dislocated joints because of violent tics.”
In spite of her interest, McDonald’s active involvement with T.S.A. Ohio was pure synchronicity. In 1993, she picked up a copy of the T.S.A. newsletter and learned the organization needed office space. McDonald’s husband, Charlie, owned a small office condo with an empty spot. McDonald offered the office space; T.S.A. accepted; and on move-in day, the organization’s executive director resigned.
“Not only did they need an office, they needed someone to run the office,” McDonald recalls. “Next thing you know, I’m working for T.S.A. Ohio.”
On many levels, it was a natural fit. McDonald holds a B.A. in sociology and social welfare, and she’s well integrated into the Jesuit mission of service—two of her great uncles were Jesuits. And those initial years as executive director set the stage for her current activities. McDonald resigned that post in 1996 and joined the organization’s board. She now serves as vice president and is an in-service coordinator for Greater Cincinnati schools.
Helping Ryan adjust from childhood into adulthood provides a rich reservoir of experience from which McDonald can draw. “In the early grade school years there was less difficulty,” McDonald recalls. “He went through some difficult times in high school, but there’s a lot to gain from that.”
There is, she says, still a major need for awareness about Tourette Syndrome. Individuals affected by it too often find themselves the butt of jokes or the subjects of unwanted curiosity. And the struggle to control symptoms can be exhausting, making it difficult for students with the disorder to keep up with class assignments. Tourette Syndrome is also characterized by attention deficit/hyperactivity disorder, obsessive-compulsive disorder, and various learning disabilities Her message to educators and parents is simple.
“It’s important to know that fair is not always equal and you have to be creative and brainstorm ways of helping each child be successful while keeping their self-esteems in tact,” McDonald said.
Overall, McDonald estimates she may spend up to 15 hours per week working on T.S.A.-related projects, including taking calls from parents in crisis. And given her background, perhaps it isn’t surprising that McDonald’s volunteer activities don’t stop with T.S.A, She has worked with autistic children, volunteered with St. Joseph Orphanage’s summer camp program and currently tutors an eighth-grade student. She is also very active in her parish, St. Bartholomew. And she doesn’t show signs of slowing down anytime soon. “It’s a sense of service for me,” she says.