The cells in Jim Simons’ brain are dying, ending their production of the signal-transmitting dopamine his body needs to move surely and smoothly.
His hard-to-control hands, he keeps mostly against his body or tucked into pillows on his couch; his legs are tightly crossed. Because chewing and swallowing are sometimes a struggle, Simons, the former director of the N.C. Division of Land Resources, savors food like never before.
“Eating to me is a luxury,” says Simons, 64, of North Raleigh. “I don’t take it for granted anymore.”
Eight years after Simons was diagnosed with Parkinson’s disease, the drugs he takes to ease his symptoms do give him many “on” hours each day, for which he is intensely thankful.
They give him hope that a few thousand more fish will find themselves on the end of his line and that his grandchildren, 9 and 7, will enjoy his congratulations on their wedding days.
These life-altering medicines exist because others before him were willing to participate in clinical trials.
Simons, who retired in May after 39 years in the N.C. Department of Environmental and Natural Resources, is paying his gratitude forward by participating in trials himself and by becoming a research advocate for the Parkinson’s Disease Foundation.
Of the approximately 1 million Parkinson’s patients in the United States, fewer than 10 percent participate in drug trials. A lack of volunteers delays about 85 percent of ongoing trials; 30 percent never get any volunteers at all, according to the Michael J. Fox Foundation.
“That is literally holding up the works,” says Simons, who has participated in more than 10 drug trials.
Two or three of the drugs Simons tested appeared to help, he says. Two or three were duds – or he was receiving the placebo in a double-blind test; he’ll never know. One drug, however, was a miracle.
“When the clinical research was over, they had to take me off of it, and I cried real tears,” he says. “It gave me three or four hours of my life back each day. I hope my contribution will help somebody get it on the market. It may not be in time for me, but it might help somebody else.”
For 10 years, Simons was in charge of many things for the state, including the safety of its 2,500 dams, 1,000 mines and several thousand sedimentation-control sites. He was the state geologist and loved his job – advising museums was a favorite part.
He gave lots of presentations – a memorable one to former N.C. House Speaker Joe Hackney on shale gas and fracking. Memorable because he overmedicated to make sure he was “on.”
“I was all over the place,” Simons says, waving his arms with a laugh. “When you overmedicate, you get worse.”
His colleagues, when they discovered his diagnosis, were wonderfully supportive, he says.
“When I told my coworker I worked with the most,” Simons says, pausing tearfully before finally saying in one of his many moments of good humor, “This also gives you emotional incontinence.”
He told the coworker he couldn’t do his job anymore if he had to sit in his office in a wheelchair.
“He said, ‘Jim, don’t worry. I’ll roll you up and down in your wheelchair all day long,’ ” Simons recalls. “It enabled me to stay on the job several more years.”
Weakness in his left side and a foot that wouldn’t cooperate were the first signs that something was wrong. A bulging disk was diagnosed, but surgery didn’t help. A doctor wielding a cortisone shot for another suspected disk problem asked Simons whether he knew he had Parkinson’s.
That would be no.
“I was devastated,” Simons says. “I thought I’d be useless, if not dead in a few months.”
‘Science is what I do’
On average, a Parkinson’s patient lives 15 years after diagnosis. Simons is halfway there, he points out. The clinical trials, though, strengthen his sense of purpose.
“Science is what I do,” says Simons, whose grandchildren call him Rock, not Grandpa. “I don’t feel like so much I’m a victim as I’m trying to fight it. It gives me a chance to fight back.”
Rock was coined by his daughter’s son, who as a toddler frequently visited Simons in his rock-filled office. Every time the child was shown a picture of Simons, he’d say, “Rock.” The name stuck.
Rock isn’t eligible for a lot of the drug trials now. Many of the projects need newly diagnosed patients, and others would require him to stop taking the medicines he knows are helping him. He’s spending his time trying to persuade others to sign up.
In North Carolina, more than 10 Parkinson’s studies are recruiting participants; an amazing 2,100 clinical trials in a variety of other medical areas are, too, just in our state.
“Lord willing, I’m gonna do a few more,” Simons says. “Every time I go in there the first time, I tell the researcher, ‘I’m here to make you famous. You’re going to fix me, and then we’re going to go on the lecture tour.’ ”