Creating Connections
Beyond the Doctor’s Visit: Taking Parkinson’s Care to the Next Level
“Game changing.” That’s how Robin Kornhaber, Senior Vice President, National Programs and Partnerships at the American Parkinson Disease Association (APDA), describes APDA Information and Referral (I&R) Centers.
APDA I&R Centers are at medical institutions across the country where APDA supports either a full- or part-time staff person within their movement disorder center, creating a direct connection between all of the resources of APDA and individual patients visiting providers in their own communities.
Filling a gap
Most people who see a Parkinson’s disease (PD) movement disorder specialist see them twice a year for about 20 minutes at a time. It can be hard to cover everything – from symptoms, medications, and treatment options to social and emotional support, exercise, and the needs of care partners – in that space of time. Having an APDA I&R Coordinator within their institution creates more services and programs for people who are coming to see neurologists at those clinics.
In other words, the support doesn’t end when the doctor’s appointment ends.
Clinical expertise just for you
“The advantage of having an APDA I&R Coordinator is that individual (who has a clinical background in health care and usually in Parkinson’s disease) can then take the baton and spend time with the patient to help them understand their disease, to provide them with resources,” Kornhaber says.
This is especially important because PD is such an individualized disease. Rarely do two people experience the exact same symptoms in the same way.
A unique resource for the PD community
APDA I&R centers are exclusively offered by APDA and made possible by the generosity of supporters like you. Together we’re transforming the standard of care for people living with PD, wherever they are on their journey.
As APDA I&R Coordinators build relationships with patients, they become a consistent presence that patients can rely on and go to, to get the information they need along the disease continuum.
“It’s essential to have somebody who supports you,” Kornhaber explains, “but more than that, really understands and knows what’s going on with your medication, with your treatments, with all the things that you need to keep you well as a Parkinson’s person.”
“We have found the services of the APDA I&R Coordinator extremely valuable…it has been a vital social connection to other people who understand the challenges of living well with PD.” – Joan and Ross Collard
Check our website to see if there is an APDA I&R Center near you.