Jodi and Chris Cianci are so passionate about the benefits of exercise for PD, they started their nonprofit Shake It Off to help raise funding for Parkinson’s exercise research.
Because the symptoms of Parkinson’s disease vary and overlap with other conditions, the rate of misdiagnosis can be relatively high, especially for people younger than 60 who demonstrate signs of early onset PD.
That was the case for Jodi Cianci, a former attorney-turned-philanthropist living in Westchester, Pennsylvania.
Jodi had been seeing a neurologist for thoracic outlet syndrome (TOC) since 2007. TOC is a group of disorders that occur when blood vessels or nerves in the space between the collarbone and the first rib (thoracic outlet) are compressed, causing pain in the shoulders and neck and numbness in the fingers.
“I had pain in my shoulder and hand, and my handwriting got small and illegible. I couldn’t type anymore,” she described. “At the end of 2010, my neurologist left, so I saw one of his associates. He said, ‘I think you have Parkinson’s,’ so I went in as a TOC patient and left as a PD patient.”
Dissatisfied with the current medications available for Parkinson’s, Jodi and her husband Chris, a chiropractic sports medicine practitioner, began researching alternative methods to manage PD.
“In 2011, my daughter went to college. She sent me a motivational email saying things like, ‘I love you! You can do this!’ Inside was an ad for Parkinson’s exercise and cycling,” Jodi said. “My husband and I decided to look into it, and that’s when learned about new research being conducted in Ohio on the benefits of high-intensity biking and PD.”
A miraculous comeback
The couple visited Dr. Jay Alberts at the Cleveland Clinic in Ohio, who had conducted research on Parkinson’s and cycling. His studies revealed a 35 percent average reduction in Parkinson’s symptoms by the simple act of pedaling a bicycle at 80-90 rates per minute for 45 minutes, three times a week.
“My husband, being an avid cyclist, knew what he was talking about,” Jodi said. “So, he and I started our own program of high-intensity cycling at home three to four times a week for 45 minutes.”
“I began noticing that she was moving a little bit better, swinging her arms a little bit better, and a lot of her other Parkinson’s symptoms seemed to be more manageable,” Chris Cianci said. “I could even read her handwriting again.”
“Having a law background, I needed proof,” Jodi Cianci continued. “I did some comparisons, and he was right. My handwriting was almost the same as it was prior to my diagnosis. I also noticed my typing was coming back. I could type with two hands instead of one hand.”
Putting the ‘We’ in wellness
Sold on the benefits of exercise for Parkinson’s, the Ciancis started the nonprofit Shake It Off, Inc. in 2012 to fund research for exercise and Parkinson’s. Its signature event is the Philly Rabbit Run, a 5K run held at the Philadelphia Zoo every April to kick off Parkinson’s Awareness Month.
This year, despite less-than-ideal weather, the event had more than 1,200 people in attendance and raised more than $26,000 for research. To date, Shake It Off has funded research for the University of Delaware, the Cleveland Clinic, the Davis Phinney Foundation and the Michael J. Fox Foundation.
When asked why she thinks it’s important for Shake It Off to get involved with other Parkinson’s organizations, Jodi Cianci said, “Because it takes a village. There’s a quote I like that says, ‘If you replace I with We, even illness because wellness.’
“That’s what inspired us to get involved with the Brian Grant Foundation,” she continued. “We were already working side by side in our missions to motivate and encourage exercise for people with Parkinson’s disease.”
Training for Professionals
The Ciancis traveled south to Miami in early March to attend the Brian Grant Foundation’s “Exercise for Parkinson’s Training for Professionals” program and were “very impressed,” Jodi said. “I think it’s so important to train professionals to work safely with this special population.”
“Some of the things I liked about the program were the visual cues, such as putting cones or tape on the floor,” Chris Cianci said. “I didn’t have any tape to put on the floor at home, so I put sticky notes in the kitchen and asked Jodi to use those as her visual cues. Immediately, her stride and arm swings were much better just by using the visual cues.”
Being married to a chiropractic sports medicine practitioner has its perks. “Chris knows anatomy pretty well and helps me with my stretches,” Jodi said. “He also helps me identify the kind of exercises I shouldn’t be doing since Parkinson’s naturally makes you hunch forward.
“A common side effect of Parkinson’s is depression,” she added. “If it wasn’t for my husband, I probably would have curled up in a ball and succumbed to this neurological bully.”
– Kathryn Jones