Virtual Support Groups For Individuals Living with Paralysis and their Family Members

Posted by Reeve Staff in Daily Dose on April 07, 2021 # Virtual Support Groups

The unique challenges of living with paralysis, whether as an individual or family member involved in a loved one’s care, can sometimes foster feelings of loneliness. But there are millions of people across the country who share these experiences—the key is finding them.

This week, the Paralysis Resource Center is launching a new virtual support group program featuring meetings designed both for individuals living with paralysis and caregivers.

Connecting with others in the paralysis community can help relieve stress and create a much-needed support network, says Peer & Family Support Program Manager Rebecca Sultzbaugh.

“Isolation can be a big factor within the paralysis community —and not just for people living with paralysis but for family and caregivers, as well,” Sultzbaugh says. “We are offering this program as a way to ease isolation and provide support and connection with other people who have experienced the same things.”

The free program will feature three separate support groups for individuals living with paraplegia and quadriplegia, and for family members and caregivers. The hour-long meetings will take place twice a month on Hey Peers, a video and chat platform.

Each meeting will host up to 15 participants, and address a wide range of topics, from physical and emotional health challenges to traveling and dating. Professional and peer facilitators will help lead the conversation and encourage participants to suggest new topics and share stories.

Lauren Presutti, a psychotherapist who will help facilitate the sessions, says she hopes participants “build new connections and friendships, while also learning new things to help enhance their lives.”

"If you are the only person in your school, workplace or community with a spinal cord injury, you might find yourself feeling a little misunderstood, lonely, or even isolated,” she says. “Those impacts can have a huge toll on mental health, leading to greater stress, anxiety, frustration and depression. It’s important to make sure you have at least some kind of outlet to connect with other people who naturally understand paralysis firsthand.”

When Chris Mason-Hale sustained a C5-C6 spinal cord injury in 2008, he was just 16 years old. His instinct was to avoid, rather than reach out to other people living with paralysis.

“I wanted to put myself in a box and isolate myself from everyone,” he says. “I couldn’t imagine somebody could come in and tell me that they had experienced the same things I was feeling.”

But while recovering at the University of Maryland Rehabilitation & Orthopaedic Institute, Mason-Hale eventually met another individual living with quadriplegia —and realized he wasn’t alone.

“When I spoke to an actual person who had a disability, another quadriplegic, that opened my eyes,” he says. “I understood the difference between someone understanding and someone actually knowing. It really helped me a lot.”

Mason-Hale, a longtime Reeve peer mentor who is about to graduate from the University of Maryland, Baltimore County with a bachelor’s degree in social work, will serve as a facilitator for the support group for people living with quadriplegia.

“I want to help people understand there are resources out there,” he says. “Our greatest strength as a community is being able to hear other people’s stories and learn from how others have adapted. There’s power in being able to transform your environment to do what you need to do, to do what you want to do.”

Joan FitzGerald first discovered the Reeve Foundation in 2015 after her fiancé Garrett (now her husband) sustained a C5 injury. Waiting in the emergency room for news of his condition, she pulled out her phone and typed, “What is a spinal cord injury?” The Reeve Foundation was the first result that popped onto her screen.

The Paralysis Resource Center helped FitzGerald navigate the early days of Garrett’s injury and her new role as a caregiver.

“Reeve helped open my eyes to the fact that there’s a whole community of people living full, happy lives,” she says. “Information is power, and Reeve is such a catalyst for being able to supply us with that power.”

FitzGerald will help facilitate the caregiver support group, which she hopes will provide space for participants to consider their own needs alongside the challenges of caring for family members or friends living with paralysis.

“I want to be a sounding board and let people know they are not alone,” she says. “I would like to be that support system for someone else.”

To register for upcoming meetings, please visit Hey Peers

This project was supported, in part, by grant number 90PRRC0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.