Part of Steven Goldenthal’s job is to get people connected. He wants to know how they feel, gets to know their medical history, what medications they take and if they are happy with their Parkinson’s disease (PD) care. Steven is a telemedicine program coordinator at the University of Rochester Medical Center, a Parkinson’s Foundation Center of Excellence.
“Through our telemedicine program we’re trying to enable any New Yorker with Parkinson’s to receive care in their home for free,” said Ray Dorsey, MD, MBA, a movement disorder specialist who sees patients virtually through online video.
The center’s telemedicine goal is to enroll 500 people with Parkinson’s across New York state who have trouble accessing care because of where they live, economic considerations, the advancement of their disease or limited social support. “We’re trying to treat those who have the greatest need and the least access,” Dr. Dorsey said.
Why would someone choose to receive treatment via telemedicine? Virtual appointments are convenient, allowing patients at any stage of Parkinson’s the ability to connect using audio-visual links over the internet from their own home. Through telemedicine, a movement disorder specialist can still treat and address all Parkinson’s symptoms, adjust medications, assess the disease’s progression and recommend additional therapies.
The center has prevailed in making the telemedicine program user-friendly. If patients have access to an internet-enabled device (computer, smartphone, tablet), Steven helps them connect to their appointment. If they don’t, Steven finds a participating location near the patient with an accessible computer. “Many new patients tell me they are not technologically inclined, but after they connect and have their first telemedicine session they not only know how to connect in the future, but feel that they’re on the path to appropriate care,” Steven said.
Through telemedicine, the center has treated multiple patients who were previously only receiving PD care from their primary physician. “We know that the more than 40 percent of Medicare beneficiaries with Parkinson’s who do not see a neurologist are at a higher risk of dying prematurely,” Dr. Dorsey said. “With telemedicine, we’re trying to enable anyone, anywhere to receive the care that they need so that they can stop fracturing their hips and increasing their chances of untimely death.”
Lena* had her first virtual visit with Dr. Dorsey last month. “He recommended that I wean off Trihexyphenidyl, which I had taken for over 10 years,” Lena said. “The change greatly reduced the side effects of my medications, increased clarity in my mind, decreased my nausea during the day and reduced my facial distortions,” she said. “I am very grateful to be a part of this program and I hope that more people with Parkinson's will have the same opportunity with virtual visits.”
The center has big plans for the future of its telemedicine care. Aside from enrolling more patients in the program and hiring additional movement disorder specialists and nurses, Dr. Dorsey wants to make telemedicine a platform for multidisciplinary care.
Next on the list: the creation of “ParkinsonTV.” In collaboration with Bastiaan R. Bloem, MD, PhD, from the Netherlands’ Radboud University Nijmegen Medical Centre, a Parkinson’s Foundation Center of Excellence, the doctors will film episodes of “ParkinsonTV” in English and Dutch, covering PD-related topics. The anticipated launch is set for later this year.
Working with the Netherlands center is only the beginning. Dr. Dorsey hopes that other Centers of Excellence can host virtual visits. “We’re always delighted to talk to other centers about how they can start a telemedicine program,” Dr. Dorsey said. “In New York, we’re trying to reach and care for the people who are no longer able to drive, those who are immobile due to their Parkinson’s or in a rural area. Other centers can use our model to reach underserved people in their state.”
The telemedicine program launched in 2013 when 16 Parkinson’s Foundation Centers of Excellence received a grant to study telemedicine from the Patient-Centered Outcomes Research Institute (PCORI). The grant proved that telemedicine was a viable option for patients to receive expert care remotely.
While Dr. Dorsey enjoys virtually treating patients, one patient showed him how this technology can change lives. Daryl* had Parkinson’s and lived in a nursing home. He was aggressive, experiencing hallucinations and was behaving erratically — he tried to escape the nursing home by jumping out of the window. Daryl’s care team virtually connected Daryl with the center, leading to a change in Daryl’s medications. The care team staff was amazed. After a couple of weeks, at their next virtual appointment, Daryl’s cognitive test score went from indicating impairment to a perfect score (from 21 to 30 out of 30), and he was much happier. His erratic behavior disappeared.
“We hope that if we can enable any New Yorker to receive care for Parkinson’s through telemedicine that we can then enable any American, and then maybe any person in the world to do it,” Dr. Dorsey said. “If we can do this for Parkinson’s we hope our colleagues find a way to do this for Alzheimer’s, lupus, rheumatoid arthritis and other conditions,” Dr. Dorsey said.
Patients agree. “I was really excited and happy to meet Dr. Dorsey and to experience my first virtual visit,” Michael* said, a telemedicine patient. “I feel that telemedicine is a major breakthrough into tomorrow’s medicine and care in the USA.”
According to Dr. Dorsey, “If you speak English, live in New York and have Parkinson’s disease... you’re in. We want to help you.” Signing up for the telemedicine program is simple:
- Apply online at www.pdcny.org, over the phone at 844-777-3269 (ask to speak with Jill Lowell) or via email at firstname.lastname@example.org.
- Once accepted into the program, set up a telemedicine appointment and electronically submit standard medical forms.
- A care coordinator provides one-on-one help setting up the session on any internet-accessible device or will provide a location to a nearby computer.
- A coordinator connects the patient to the video conferencing software on the day of the appointment and the patient sees the movement disorder specialist.
The telemedicine program continues to change lives while providing expert Parkinson’s care to countless patients, but sometimes the biggest benefit can be not having to leave the house. “I loved my telemedicine appointment,” virtual patient Catherine* said. “I was in my pajamas, my dogs were able to enjoy the visit, too! I was very comfortable, relaxed and able to remember everything I wanted to ask and discuss with my neurologist.”
*name changed due to patient confidentiality.