Dealing with dystonia

Andrew Edwards

Laguna real estate agent Rae Hunt has a message that goes beyond

property values along the coast. She made her debut as an advocate

for patients of a neuromuscular disease at a Rotary Club luncheon on

Tuesday at the Hotel Laguna.

“That was my dystonia coming out party,” she said jokingly.

Dystonia is a neurological ailment that causes muscles to

involuntarily spasm. According to the Dystonia Medical Research

Foundation in Chicago, there are about 300,000 dystonia patients in

North America, and the disease is the third most common movement

disorder, behind Parkinson’s disease and tremors. There is no known

cure for the disease, which can affect any part of the body.

Much of the foundation’s efforts are directed toward understanding

how patients contract dystonia in the first place, said Robert

McAlister, the foundation’s executive director.

“Most of the research we’re doing is trying to understand

dystonia,” McAlister said. “Once we understand it we can try to

intervene.”

The most serious form of dystonia can affect all muscle groups and

is caused by a genetic mutation, McAlister said. Localized dystonia,

which affects specific muscle groups, can be brought about by a

myriad of factors, including brain trauma and illness.

Hunt said stress can trigger dystonia, though it is not a

psychosomatic condition.

In her speech to Laguna Rotarians, Hunt, who has recently become a

spokeswoman for the Dystonia Medical Research Foundation, said

dystonia, was “politically correct,” meaning it can strike anyone of

any age or ethnic group.

“Anyone in this room could get dystonia,” she said.

Hunt said she first developed dystonia in 1997, after a string of

stressful events that started with her car stalled on South Coast

Highway when the sub-frame buckled as she drove over a manhole cover.

Not long after, Laguna Beach police paid an unannounced visit to her

garden on their way to catch a knife-wielding suspect near her home.

That same day, she had a grand mal seizure and blacked out.

She woke up to discover her pharmacist had provided her with an

overdose of prescription medicine and an uncontrollable shaking of

her head and hands.

Her initial reaction to her condition was to retreat from contact

with other people. She didn’t want them to see her then-unexplained

spasms.

“I felt very ashamed, I didn’t want to be out in public,” Hunt

said.

Hunt’s condition was diagnosed by a neurologist in 2000, and for

the past two years, she has attended a support group to help her

fight dystonia alongside other patients who are waging similar

battles.

“When you think you’re the only person in the world that is

suffering from something, and something so visible, there’s nothing

quite like being in a room full of people with the same disease,” she

said.

Hunt’s speech motivated Laguna Rotarians to donate more than $960

to the foundation, where the money will be spent on research, Laguna

Rotary President Dave Winckler said, even though the club rarely ends

meetings by soliciting donations from individual members.

“Her presentation was outstanding ... and seldom do we pass a

hat,” he said, adding club members plan to look for sources of grant

revenue that can be applied to dystonia research.