Veteran with parkinsonism: Telehealth saved my life

"Telehealth saved my life," said Vincent DeMarro, a Veteran with parkinsonism in West Chester, Pennsylvania. "It's pretty amazing how the whole telehealth team comes together. It reminds me sometimes of fantasy football. I feel like I have a dream team."

Before getting connected with his current "dream team" of telehealth providers, DeMarro spent years suffering from seemingly unrelated symptoms, such as muscle tremors, loss of smell and stomach problems.

After seeing a primary care provider at the Coatesville VA Medical Center, he went in for extensive testing at the Parkinson's Disease Research, Education and Clinical Center (PADRECC) in Philadelphia and the Wilmington VA Medical Center. In 2020, he was diagnosed with parkinsonism, a condition similar to Parkinson's disease.

Expertise from out of state

After his diagnosis, DeMarro's provider connected him with telehealth providers, including neurologist Dr. Beth Whittington, who is part of the National TeleNeurology Program (NTNP), a multidisciplinary neurology telehealth team that the Coatesville VA Medical Center receives support from.

Even though Whittington is based in Indiana, she gets DeMarro the support he needs to keep working by visiting with him in the comforts of his home. For example, she has written letters certifying his need for telework and county transportation services.

Whittington's team includes experts in pharmacy, social work, nursing, as well as consultation with movement disorders specialists of the national PADRECC network. NTNP allows VA to leverage telehealth to bring multidisciplinary and expert care directly to the Veteran.

"Dr. Whittington has been a like a guardian angel for me," DeMarro said. "I can't drive anymore because I have freezing episodes. If it wasn't for her, I wouldn't have county transportation to work or the option for telework."

Adjusting care from a distance

In addition to video visits, Whittington uses other telehealth technologies to provide treatment to DeMarro. About a year ago, DeMarro was experiencing muscle spasms, which was disrupting his sleep. Whittington sent him a wrist-worn monitoring device so she could track his sleep and symptoms remotely. This approach saved him from traveling to a VA medical center and allowed her to obtain days' worth of data, far surpassing what one could view in a short medical visit.

"It's about a two-hour ride into Philadelphia," said DeMarro, whose condition makes it difficult to be stationary for more than 45 minutes. "So going into PADRECC is a big ordeal."

In addition to using the remote monitoring device, DeMarro reported other health data through My HealtheVet. This gave Whittington the information she needed to adjust his nightly medicine. As a result, his muscle tremors decreased and his sleep improved.

Veterans can use My HealtheVet's Secure Messaging feature and the Share My Health Data app to share information with their care teams.

An integrated telehealth team

DeMarro also joined a TelePhysical therapy group for Veterans with neurological diseases, such as Parkinson's disease and parkinsonism.

"I've learned so much from my neurophysical therapy group," DeMarro said. "It's nice talking to people [who] are going through the same thing as you."

Depending on the needs of the group, the provider running the sessions brings in other experts, like nutritionists, pharmacists and mental health professionals to help Veterans manage their symptoms and social situations.

"We discuss things that can be overwhelming, like how to navigate the holidays," said DeMarro.

The therapy group leader also worked with DeMarro one-on-one to create a gym workout that helps him better manage his symptoms. "She customized this workout program for me, and for the first time in over three years my condition didn't get worse," DeMarro said. "I don't know where I'd be today without my telehealth team."

For more information about TelePhysical Therapy, TeleNeurology, PADRECC or how to connect with any telehealth specialty, Veterans can talk with their VA care team.