FIGHTING BACK: Spinning is a key component of Jodi Cianci’s exercise routine//Photo by tessa marie images
First dates can be awkward, especially for those in their 40s who’ve gone through a divorce. And if the date involves a tall, athletic man with a good job and a charming smile, you really want to bring your A game.
Jodi Cianci was trying to do exactly that as she enjoyed dinner one night at West Chester’s Dilworthtown Inn. The evening was going well, until she raised her glass to take a sip. Her hand shook—hard—and it wasn’t from nerves. A year earlier, Jodi had been diagnosed with a nerve impingement called thoracic outlet syndrome. “A week later, we were on another date, working out together, and the tremor came back,” she recalls.
None of that dissuaded Christopher Cianci from pursuing a relationship with Jodi. The couple married in 2010.
Then came a troubling plot twist: Jodi’s thoracic outlet syndrome had been misdiagnosed. She was actually suffering from Parkinson’s, a degenerative neurological disease that kills brain cells in the region that produces dopamine.
Tremors are just one symptom of Parkinson’s—but they are the most widely recognized, thanks to noted patients like Michael J. Fox and Muhammad Ali. But all tremors aren’t the same. There are different kinds with different causes, which leads to one of the challenges of Parkinson’s: It’s tough to diagnose.
Jodi started down that path eight years ago. Her first symptoms appeared in 2007 amid a divorce. Soreness in her neck limited her range of motion, then her hands began to cramp, and
her manual dexterity declined. Jodi’s movements slowed, her tremor became more pronounced and her gait was altered. An MRI ruled out tumors, then diagnosing her symptoms hit a wall.
There isn’t a clinical test that leads to a definitive Parkinson’s diagnosis. The closest thing is the radiopharmaceutical DaTscan, which helps capture images of the brain’s dopamine transporters. But the National Parkinson Foundation notes that the test doesn’t actually diagnose Parkinson’s disease; it only shows that there’s an abnormality in the dopamine transporters.
The only thing that confirms a Parkinson’s diagnosis is the response to a dopamine-replacement medication like Levodopa, also known as L-dopa. But L-dopa must be taken in specific doses, and there are multiple side effects. Over time, the medication is known to lose its effectiveness.
By 2011, Jodi had been to a series of doctors. Some believed she had Parkin-son’s, others thought otherwise. A movement-disorder specialist ordered an MRI, which showed that Jodi had a herniated disk in her neck. This could be the cause of a lot of her symptoms, the doctor said. Epidural steroid injections in her neck relieved inflammation around the disks. Over the next few months, she continued to improve.
Still, Jodi was able to land a coveted appointment with a neurologist at Johns Hopkins Hospital, so she went, consenting to a DaTscan test. She was at home when the call came. “The doctor said, ‘I thought your test would be negative, but there are low levels of dopamine on the left side of your brain that are affecting the right side of your body,’” Jodi recalls. “‘You have Parkinson’s.’”
Jodi was stunned. “My husband came home and found me crying,” she says. “I was 51 years old. I thought I’d be in a wheelchair soon.”
She’s not. In fact, she’s walking, cycling and more. In 2012, Jodi began a regimen established by Dr. Jay Alberts of the Cleveland Clinic and Christopher Knight of the University of Delaware. Theirs is among the latest research that focuses on reducing Parkinson’s symptoms by increasing dopamine levels through high-exertion exercise.
Aside from lifting weights, Jodi rides a cycle at over 80 rpms for 45 minutes, three times a week. It also helps that her husband, a sports-medicine chiropractor, is the perfect workout partner. “He’s a former bodybuilder and a huge cyclist,” Jodi says. “Chris has encouraged me in every part of this.”
Six months into the exercise program, Jodi’s symptoms abated, her spirits lifted, and their lives regained some normalcy. Jodi and Chris formed the aptly named Shake It Off, a nonprofit organization dedicated to raising awareness of the benefits of exercise on Parkinson’s patients. Through various fundraisers—including the Rabbit Run, a 5K run/walk at the Philadelphia Zoo—the Ciancis have raised more than $25,000 for the University of Delaware’s research program and the Michael J. Fox Foundation for Parkinson’s Research, for which Jodi has become an ambassador.
“My gait is still altered, and my movements are still a little slow,” Jodi admits. “But there are times that I forget I have Parkinson’s. Now, when I’m at spin class, I feel that I’m just like everyone else.”
HIGH-PROFILE YET ELUSIVE
Surprising Parkinson’s facts.
Source: Parkinson’s Disease Foundation
1 million: Americans who live with Parkinson’s disease.
60,000: Americans diagnosed with Parkinson’s annually.
7–10 million: People worldwide who live with the disease.
4%: People diagnosed before age 50.
1 1/2 … times more likely to be diagnosed if you’re a man.
$2,500: Average yearly medication cost per patient.