Nearly 1 million people in the U.S. are living with Parkinson’s disease, and an estimated 35,000 live in Pennsylvania. Despite the staggering numbers, 75% of Parkinson’s patients don’t receive their medications while in the hospital, and the majority subsequently suffer from avoidable complications, according to the Parkinson’s Foundation.
To fill this awareness gap, the foundation has launched a program called “Aware in Care,” which aims to raise awareness about Parkinson’s disease for health care professionals.
Now, the Parkinson’s Foundation is looking for program ambassadors, who will engage their local communities and hospitals with education about Parkinson’s disease and distribute Aware in Care kits. The kits include information for medical professionals about Parkinson’s disease, like a medication schedule, and an ID bracelet for patients.
Applications to become an ambassador are open until Friday, June 24. Around 30 volunteers from around the country will be selected. They will be coached “to create their own unique goals based on their interests, experiences, and any health/caregiving/professional time constraints,” according to the foundation.
One of the program’s main goals is to improve the quality of care for Parkinson’s patients in the hospital, said Annie Brooks, director of education at the Parkinson’s Foundation.
“We created a set of tools that can be used by people with Parkinson’s and their care partners whenever someone with Parkinson’s is in the hospital,” Brooks said, “really to educate hospital staff around their needs, specifically with medication, timing, and medications to avoid and advocate for better care.”
Ken Thurman, a retired Temple University professor who lives in Berlin Township, New Jersey, became an Aware in Care ambassador to give back to his community. He was diagnosed with Parkinson’s five years ago.
“One of the commitments that I made to myself when I got diagnosed with Parkinson’s was that I was going to live as well with Parkinson’s as I possibly could, and that I was going to do my best to help other people do the same thing,” Thurman said.
Both Brooks and Thurman noted the difficulties of the pandemic for people with Parkinson’s disease, many of whom lost access to regular exercise classes or support groups.
“People with Parkinson’s are already at high risk of social isolation,” Brooks said. “I heard from a lot of care partners that a lot of their loved ones with Parkinson’s also saw a decline in cognitive abilities over the pandemic.”
Thurman said he feels gratified to be a part of the program.
“You’re making people aware of information that they may not have, or in the case of health care professionals, you are making them aware of information that they may have had, but it may not be current, or it may not be at the forefront of their brain,” he said.
Brooks said it’s not uncommon for health care professionals to have misconceptions about Parkinson’s disease.
“Parkinson’s was maybe a lecture in their education. Maybe it was a paragraph in a textbook,” she said. “The reality is that most hospital staff, whether it’s the nurses or the doctors or the pharmacists, are not Parkinson’s experts and don’t recognize that this is a condition that requires really precise medication timing.”
The foundation is also working with nursing schools to better educate faculty and students about Parkinson’s disease.
Those with Parkinson’s disease, as well as caregivers, clinicians, or exercise professionals, can apply to be an Aware in Care ambassador online.