As Gary Coons talks about the security challenges that come with Indianapolis hosting the 2012 Super Bowl, he fidgets with a small patch of cloth. Holding the fabric helps still his hands from the shaking associated with Parkinson's disease.
"I try to keep my fingers from moving," said Coons, chief of the city's division of homeland security. "I do my best to hide it."
Coons, 39, believes he contracted Parkinson's during his days in the Beech Grove Fire Department, where he worked from 1998 to 2006.
Parkinson is an incurable, degenerative and debilitating disease. It also afflicts "Back to the Future" actor Michael J. Fox; Janet Reno, former U.S. attorney general; and former boxer Muhammad Ali.
Scientists are just beginning to explore whether there could be a link between exposure to heavy metals like manganese and Parkinson's disease. Coons thinks his could have been triggered that way. He thinks his may have come from breathing toxic air at a paint store fire three years ago.
In 2008, Coons founded "Firefighters with Parkinson's Disease," an Indianapolis-based organization working to educate firefighters and public safety employees about the dangers of suspected chemical triggers for Parkinson's. Coons is also raising funds for research.
His work led to a state law that enhances benefits for Indiana public safety workers who contract Parkinson's.
Richard Nass, an associate professor of pharmacology and toxicology at the Indiana University School of Medicine, has been inspired by Coons and his story.
Working with a neurologist, Nass is trying to examine the connection between toxins, such as lead and mercury, and neurological disorders, such as Parkinson's and Alzheimer's.
He plans to take samples from firefighters' coats and swab their noses to determine how high their exposure to heavy metals may be.
"We want to make sure . . . that whatever conclusion we draw is the truth as much as we know it," he said. "I know of nowhere else in the country where we have this opportunity."
Coons hopes first-responders will wear their breathing apparatuses, even after a fire is extinguished, to avoid inhaling toxic air from leftover vapors.
"I want to make it safe," he said. "I don't want somebody coming down with a disease."
Coons was a career firefighter for 15 years before retiring in 2006 with a line-of-duty injury. In 2005, he went through a series of surgeries to repair his shoulder and back damage related to his line-of-duty injuries. During this time, his wife, Trish, began noticing he was moving more slowly, his legs shook, he had blank stares and he stooped as he walked.
He became aware of increased stiffness and pain in his shoulder and lower extremities, smaller handwriting and soft speaking. They both related these symptoms to his injuries and sought medical help from multiple physicians. They offered therapies, but his injury was never connected with a neurological disease.
It took two years before Coons was diagnosed.
The mathematical probability of Coons (who was about 34 when he started developing symptoms) developing Parkinson's disease was 1 in 100,000. But a smattering of research suggests that firefighters run a much higher risk of developing the disease.
It's unclear how many firefighters have Parkinson's, as many younger victims don't come forward out of fear that they'll lose their job.
Charleston (S.C.) Fire Chief Thomas Carr also has the disease and believes his is "most likely" attributable to exposure to toxins during fighting fires. His assignments, including searching the rubble after the April 1995 bombing of the Murrah Federal Building in Oklahoma City, all doused him with toxins.
"I'm interested in Gary and Gary's work," said Carr, 56. "We're trying to leverage all of these connections with the fire service. . . . We have to teach our people."
Coons, whose professional career has ranged from firefighter to an administrator of the rescue group Indiana Task Force 1 and trustee of Perry Township, was named to his current job in 2010 by Public Safety Director Frank Straub.
Straub was aware that the person responsible for bringing together police, fire and emergency management personnel and resources under the homeland security division has an affliction that requires taking as many as 14 pills a day.
"I never once considered Gary's illness as a bar to appointing him to his current position," Straub said. "In fact, it is virtually impossible to slow him down."
Coons thinks he's sharper because of the constant flurry of activity. In early February, he shuffled between helping coordinate the city response to an ice storm and being a part of the delegation of officials who took a fact-finding trip to the Super Bowl in north Texas. He thinks his constant challenges and workload help him manage his symptoms.
His energy has earned the praise of Scott Newman, the former Marion County prosecutor who was diagnosed with Parkinson's while in office. He is also a former public safety director.
Usually those with Parkinson's can't handle too many competing stimuli that "can cause a freeze-up," said Newman. Coons "manages to ride through that . . . so full of energy that he leaves people in his dust."
Star reporter Shari Rudavsky contributed to this story.
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