It was well over a decade ago that Kim and Richard Poppa learned that Kim had Parkinson’s disease.
Like many people receiving that news, they initially felt a sense of isolation from others in the Parkinson’s disease community. They were living in Skaneateles at the time and heard about the University of Rochester Medical Center’s resources and research into the degenerative brain condition.
In 2010, URMC was among the first organizations to participate in the Parkinson’s Progression Markers Initiative, a long-term study to learn more about who gets the disease, who doesn’t and why. Now, the team is looking to add over 40 new participants including those who are afflicted by the disease, showing early signs and those who are disease-free.
“Without any second thoughts,” the Poppas were among the first to sign up as participants.
“That day you get that diagnosis, you feel pretty darn alone, isolated, frightened. So, it’s a very affirming and positive way to deal with something that isn’t so positive,” says Richard Poppa, who adds that they were able to find a supportive community in the other participants as well as the medical staff. “This is probably true of any great organization, but we haven’t met anyone there who has not been a caring and well-educated person.”
“They felt like our extended family,” Kim Poppa agrees.
While Kim and Richard Poppa live outside the Rochester area now, they encourage people to participate in PPMI as an important part of research into Parkinson’s disease.
This year, the URMC PPMI team is looking to expand their study even further. There is always a need from the study for a control group of people with and without the disease, which is how Richard Poppa was able to participate, but this latest push includes even more specific groups. It includes people carrying a genetic mutation, such as GBA and LRRK2; people of Ashkenazi Jewish descent; people with REM sleep behavior disorder or RBD (acting out dreams); and people who have developed a loss of smell.
“I think we are increasingly realizing that to call it Parkinson’s disease is implying there is one disease-causing mechanism for every person with Parkinson’s disease. But that’s not true,” says Ruth Schneider M.D., a neurologist at URMC specializing in movement disorder and the lead PPMI investigator at the organization since 2016. “In reality, there are many different causes of Parkinson’s which end up on one final common path. So, I don’t think there is going to be one treatment which will be equally effective for everyone with Parkinson’s. Rather, I think we have to hone in on a more individual level.
“To me, that’s part of the importance for recruiting all of these diverse groups. Because that’s going to give us a lot more data to drill down on the issue of Parkinson’s disease further and hopefully come up with new treatments,” she adds.
In URMC’s PPMI team, there are two coordinators and five other physicians who administer cognitive tests or take biological samples through blood draws or spinal taps in the participants’ biannual in-person checkups. Schneider agrees that there is an exceptional closeness between staff and participants, something that is particularly important for research with Parkinson’s.
“One, as it’s been pointed out (by Kim and Richard Poppa), this helps to build a relationship across the study. But we also know that the ways we measure or judge Parkinson’s disease, there’s some subjectivity in it, so it might vary from person to person and how they rate something,” says Schneider, reiterating that Parkinson’s is a disease with a wide variety of symptoms.
“Everyone’s journey is different, but we’re all dealing with, I call it ‘tweaking,’” Kim Poppa puts it. “We’re all changing as we go.”
As a common phrase in the Parkinson’s community goes, “If you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.”
In total, the URMC PPMI team is hoping to roughly double enrollment with this latest push. The goal is to enroll 25 people with the disease, five people without it, and 12 people who might show early indicators, through genetic mutation, loss of smell, or dream enactment.
Participants are expected to sign on for a five-year period with biannual in-person checkups. However, they can stay on longer, like the Poppas, who were in the study for 12 years. Separate from the in-person participants, people wanting to get involved can also take PPMI’s online survey.
PPMI is part of the larger Michael J. Fox Foundation and includes more than 50 associated organizations like URMC, which itself was named a Center of Excellence by the National Institute of Neurological Disorders and Stroke in 2018. What further adds to PPMI’s value is that the anonymized data is made available to qualified researchers.
“The PPMI data has helped to generate hundreds of publications, it’s hard to distill it down to just a couple findings,” Schneider says. “That’s a really good thing, because we need to have an approach from all different angles when it comes to studying Parkinson’s disease.”
One of the areas where research still needs to be done is a treatment to slow the disease, another reason why the URMC team is targeting people who have a greater chance of developing Parkinson’s. Schneider says early indicators can appear years to decades before the disease actually manifests.
And research into this disease could be even more important as it appears to be one of the fastest-growing neurological disorders. A 2018 study from URMC found that from 1990 to 2015, “the prevalence of, and thus disability and deaths owing to, PD more than doubled.”
In 2019, a Global Burden of Disease Study estimated that Parkinson’s was prevalent in approximately 8.5 million individuals.That year, 329,000 deaths caused globally by the disease was an increase of over 100 percent since 2000.
“So many people we know, when I tell them I have Parkinson’s, they’ll go, ‘Oh, my dad had Parkinson’s.’ It just touches people and on such a deep level,” Kim Poppa says. “(Participating in PPMI) is the best way to help progress knowledge and treatment of Parkinson’s. And that’s what it’s all about.”