Adjusting to Telehealth in the Age of COVID Pandemic Presents Telemedicine Benefits and Challenges for Individual Battling MLD

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Adjusting to Telehealth in the age of COVID
Illustration by Getty

As COVID-19 emerged on the public health scene, patients and providers suddenly had to switch from traditional in-person appointments to telehealth. Now, having spent months adjusting to telehealth, many are welcoming the change.

In 2014, Greg Bennett, now 24, was diagnosed with metachromatic leukodystrophy (MLD), a rare genetic neurological disease that causes white matter destruction throughout the nervous system. As a result of this diagnosis, Greg works with many specialists and normally has appointments at least twice a week, a schedule which can be challenging for both him and his parents.

“We would normally have to schedule our entire day around an appointment,” says his mother, Pam Bennett. “Our commute is typically 45 minutes to an hour one way, and then we’d have to do paperwork or sit and wait until the doctor was ready.”

Greg also has difficulty walking and spends considerable time and energy getting in and out of the car, across the parking lot and into the facility where he sits and waits before walking to the exam room.

When COVID-19 became a public health crisis, most of Greg’s appointments became virtual. This shift not only reduced the risk of him being exposed or infected, but also helped eliminate the stress of in-person appointments.

“It takes away the worry and saves us so much time and money. Now, when it’s time for his appointment, he can just sign on, so an hour appointment actually takes one hour,” says Pam.

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The Bennetts had some familiarity with telehealth even before the pandemic. Hazardous weather conditions or occasions when Greg was too ill would often contribute to telehealth appointments. This familiarity, along with the fact that most appointments are with longstanding caregivers, helped in the adjustment process.

Even physical therapy providers were able to adapt Greg’s routine. When Pam holds the laptop or phone, Greg’s physical therapist is able to see what’s available in the house and customize his routines.

Telehealth also presents another advantage: Sessions are more personal and allow providers to understand Greg’s living environment.

“Greg loves gardening, so he can show them his flowers or introduce them to our dog,” Pam says. “They’re seeing his everyday life, and he also gets to see them outside of the clinical setting. He’s met one of their kids and sees pictures in the background, so it really humanizes the providers.”

Telehealth, especially when physical examinations are required, also comes with disadvantages.

“I’m a nurse, so I understand what they’re looking for in a physical exam and can help out with that, but if I didn’t have that training, it would be difficult. If he needs his lungs or heart listened to, telemedicine won’t work,” Pam explains.

She adds that, for Greg, the lack of socialization has also been a challenge. “Greg is quite chatty and social. He enjoys talking to the secretaries and med techs. He brings them plants and they share jokes. The offices really became a main form of socialization for him because he was there so often, and he really misses that interaction.”

Despite the difficulties telehealth can bring, Pam says that the positives outweigh the negatives.

“In the future, I’d like to do the physical exams in person, but for the psychiatry and psychology aspect, I would definitely want to continue with telehealth,” Pam says.

To learn more about Greg’s story and support the search for a cure for MLD, visit gregschallenge.org and follow his Facebook page @gregschallenge.

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