Spinal cord injuries can be caused by many types of trauma and disease, but the outcome is often the same: a partial or total loss of sensation and motor function below the level of injury. Survivors of this type of injury are thrust into a new lifestyle overnight, one where a solid support system is particularly beneficial.
Encompass Health Rehabilitation Hospital of Sunrise, Florida, has seen its share of spinal cord injury (SCI) cases. As a hospital that has held a SCI-specific certification from The Joint Commission since 2013, its team is equipped to treat and educate these patients on a variety of topics ranging from activities of daily living, wound prevention, seating and positioning with specialty wheelchairs and adaptive equipment, dysphagia management and more.
“Being in South Florida, we see a lot of high-impact spinal injuries. Many of them are dual diagnosis of SCI and brain trauma due to football injuries or other sporting and boating accidents,” said Stacy Thomashaw, direct of therapy operations at Encompass Health Sunrise.
Thomashaw knows that beyond clinical guidance, these patients can have unique emotional needs; some of which are best addressed in peer-to-peer conversation. That’s why when two spinal cord injury patients approached an Encompass Health Sunrise nurse in 2008 with the desire to start an in-house support group, hospital leadership was quick to provide the necessary resources.
“The patients asked for a support group, and it made a lot of sense,” Thomashaw said. “These patients have a unique bond in their common experience. They wanted to create a space to talk about the issues they struggle with, so of course the hospital was happy to facilitate it.”
Finding a tribe
Ryan Gebauer is the sitting president of the support group, acting as a liaison between the hospital and the support group members. He was paralyzed after a jump into a lake severed his C3/4 vertebrae when he was 16 years old.
“In 1995, there weren’t many resources for people with spinal cord injuries,” he said. “I wish a support group had been available to help my family and I adjust to my new lifestyle. Remembering that, I’m motivated to be involved.”
Once composed exclusively of Encompass Health patients, the group has grown to include many outside members and is now formally referred to as the Spinal Cord Injury Support Group (SCISG) of South Florida, a public group with an open poor policy. Its mission is to offer support to persons with spinal cord injury and neurological disorders along with their families, caregivers and friends.
The group, a roundtable of sorts about life after spinal cord injury, meets on the first Tuesday of every month. The meetings provide a space where members can share their triumphs and vent their frustrations, sometimes hearing from guest speakers who share their knowledge about wellbeing and health with the group.
It’s not always so structured, however—the group loves to have movie nights and makes outings to sporting events and bowling alleys. Members also host fundraisers periodically to fund these trips (as well as to cover administrative costs of running a 501(c)(3)), which helps relieve the financial burden of activities that can often be challenging for those with physical limitations. Gebauer believes that resources for this demographic are in high demand, noting that not long after the support group was started, nearby facilities expressed interest in starting similar programs.
When asked what she would say to other hospitals that may be considering a support group for patients, Thomashaw said, “We recommend it 100 percent. At Encompass Health, only one staff member has to take the initiative. It’s so easy to start and the patients really appreciate it, whether it’s for victims of spinal cord injury, stroke, aphasia, traumatic brain injury or something else. We may act as a resource and a home base for them, but the group quickly grows and thrives on its own.”
Thomashaw says she’s often inspired by the good works done by the group; members go the extra mile for each other as well as those outside the circle. To assist Puerto Rico residents dealing with the aftermath of Hurricane Maria in 2017 and early 2018, the group held a donation drive collecting catheters, wound care materials and other necessities for those in need during an extreme shortage of medical materials on the island. Thousands of items were collected and stored at Encompass Health Rehabilitation Hospital of Sunrise until they could be shipped to those in need.
“That’s one reason why we are so happy to support them, because it’s bigger than a support group. It’s about the camaraderie of community— including communities that aren’t ours,” Thomashaw said.
The group’s members are also known to volunteer at local hospitals to help demonstrate new equipment or techniques that are best shown using a person with demonstrable physical challenges. Their involvement helps inform others about what it’s like to live with a spinal cord injury and what practical equipment and therapies are most useful.
While the support group has grown to a place where it can operate independently, Thomashaw is happy that her hospital still plays a part.
“We’ve seen the good it does for our patients, and it’s good for our team to see those patients coming back with rising spirits, a growing support system and increased independence. It’s rewarding and inspiring to see their progress after discharge.”
Gebauer shares those sentiments.
“At the end of the day, we celebrate each other. We don’t care where you come from or what you look like, or your level of disability—whether you’re in a wheelchair or on crutches. Encompass Health Sunrise started a support group but, it has turned into a friend circle; that’s really what we are. There’s mentorship. There’s friendship.”
The Spinal Cord Injury Support Group of South Florida’s Broward chapter, sponsored by Encompass Health, will host their first annual SCI Fundraising Gala on Thursday, Sept. 19 at Encompass Health Rehabilition Hospital of Sunrise. Tickets are available on EventBrite.