It was 2007 when Jen Gaudio, 50, started experiencing symptoms — tremor, weakness and walking issues — while working as a museum curator at the American Civil War Center at Historic Tredegar in Virginia. After seeing a neurologist and being tested for all kinds of diseases, her doctor suggested she may have Parkinson’s but sent her to the Institute for Neurodegenerative Disorders — a research center in New Haven, Connecticut — for a second opinion.
“I had a very frustrating time with diagnosis,” Jen recalls. By then it was 2009, and right when the institute was working with The Michael J. Fox Foundation to begin an observational study, the Parkinson’s Progression Markers Initiative (PPMI). The site’s lead doctor recommended a DaTscan, an imaging scan which measures dopamine, the chemical lost in Parkinson’s disease (PD). While a DaTscan cannot be used on its own to diagnose PD, it can be a useful addition to a doctor’s examination. In Jen’s case, it helped confirm a Parkinson’s diagnosis.
As a result, Jen was one of the first ever participants to enroll in PPMI, which officially launched in 2010. By this time, Jen moved to New London, Connecticut, and was working as a museum curator for the U.S. Coast Guard.
“Because I'm a historian or just because I'm naturally curious, I started reading up on the study and was interested in how it was going to track markers,” says Jen. “It's such an isolating thing to have disease of this nature, that it can leave you frustrated with the thought that there's no cure. Enrolling in PPMI gave me an option to do something constructive and practical.”
Jen is one of more than 1,400 PPMI participants completing clinical exams and contributing data and biological samples in pursuit of a cure. (Monitoring changes in volunteers with and without PD over time will help researchers understand how Parkinson’s starts and progresses.) She has been going to study visits at the institute twice a year since 2010.
“I joke with the nurses at study visits because between the DaTscan, x-rays, MRIs and blood work — it makes you feel like you’re going to get superpowers,” Jen laughs.
Along her journey with Parkinson’s, Jen reached a point where work and completing daily tasks became difficult. In 2015 Jen had deep brain stimulation (DBS) surgery to help manage symptoms. She was a wheelchair user for eight months and DBS helped her walk again. Jen also notes having DBS didn’t impact her participation in PPMI. (Download an educational guide on DBS.)
A decade past her first study visit, Jen recently transitioned into the next phase of PPMI and looks forward to keep contributing to critical research. PPMI is now expanding to include a much larger population of people who don’t have Parkinson’s, to determine who may be at risk for the disease. Parents, brothers and sisters, and adult children of people with PD aged 60 and up are especially needed. Take a short survey to see if you are eligible.
Sites across 12 countries are also recruiting people with Parkinson’s diagnosed in the last two years and control volunteers with no known risk to act as a comparison group. To learn more and get started in the study, visit michaeljfox.org/ppmi.
“I've always been interested in scientific study and history of medicine, and I know how much research studies contribute to the development of cures and medication,” says Jen. “I'm getting the feeling that what I'm doing is making a difference because you can see it in the product.”
As Jen plans for retirement, she points out why she continues in PPMI. “I was always raised with the attitude: Make the world a better place. If you can't do it large, do it small. Do it local. That is something I try and fulfill as much as possible.”
Ready to learn more and get started in PPMI? Visit michaeljfox.org/ppmi today.