He went from the Ironman to the scrapheap — and back.
Elite athlete Drew Heighway was only 49 when he was diagnosed with early onset Parkinson’s disease — and the medication regimen was turning him into a monster.
But last year, Heighway got a revolutionary brain surgery that uses electrodes to stop his symptoms before they start. Think of it as a pacemaker for the brain.
“I’m a better husband and grandfather, and I’m just a nicer person to be around,” he says, recalling how moody and grumpy he was when he was taking a full dose of Parkinson’s medications.
Now he’s set to compete in the Mont Tremblant Half Ironman in Quebec this June — and aiming for a personal best.
This is from a 57-year-old who couldn’t even swim a year ago.
Last summer, the Chatham, N.J. resident underwent a procedure that planted electrodes four inches beneath his skull. The mechanism, powered by a battery implanted under his collarbone, stops Parkinson’s symptoms through deep brain stimulation.
The treatment originated in the 1950s, and has been used for depression, chronic pain and other disorders, but was FDA-approved for Parkinson’s only in 2002.
Heighway was a strong candidate for the procedure, said his neurosurgeon, Dr. Brian Kopell of The Mount Sinai Hospital, who has done it more than 800 times. Patients are eligible when their meds don’t correct their tremors, their symptoms come and go, or they develop involuntarily movements in the manner of actor Michael J. Fox.
The $180,000 surgery is covered by all insurances, including Medicare and Medicaid.
Heighway’s medical odyssey started in 1998 with an ache he was quick to ignore.
“I was running one afternoon and I got this horrible cramp in my foot,” he says. “As a runner, you (think) it’s probably not a big deal, and that’s how I dealt with it for a number of years.”
But foot cramps are an early symptom of the degenerative condition, says Heighway’s Mount Sinai neurologist, Dr. Ritesh Ramdhani. And after that initial cramp, Heighway started walking with a limp.
Nearly a decade later, in 2006, he finally went to a neurologist. He was stunned to get his diagnosis.
“I was in shock,” Heighway says. “I knew of Parkinson’s from Michael J. Fox and I saw his progressive state. I knew it wasn’t good.”
Early onset Parkinson’s afflicts just 10% to 20% of the 1.5 million Parkinson’s patients in the U.S. Heighway initially began a medication regimen, but it significantly impaired his quality of life.
“I would pass out (and have) mood swings,” he recalls. “I was not a nice person to be around. I was angry at anything and everything.”
He learned about deep brain stimulation from his wife, and was eager to try it. Anything, he decided, was better than the meds.
Now, after three successful operations, Heighway is back to running, playing hockey and staying active with his granddaughter.
“I said, ‘Why wait until I’m 70?’ If I can do things better, if I can race faster and continue to do all the things I love, there’s no way I was going to wait. I was gonna go for it.”
The procedure has proven to be so beneficial in studies that doctors don’t understand why more patients don’t get it.
“The neurologists that continue to say, ‘Let’s try one more medication,’ are ignoring the data that’s out there,” Kopell says. “Patients are kept in the dark and as a result they’re reducing precious years of their lives.”
