Photo and video by Lathan Goumas. Additional photos provided by Karen Domenici.
While Rolf Ness was bodysurfing during his vacation at the Outer Banks, North Carolina, in 2016, a wave spun him into a flip, and he ended up hitting his head on the ocean floor. Ness found himself facedown in the water, unable to move. During the accident he had broken his neck and was left paralyzed with an incomplete spinal cord injury.
After a few months of rehabilitation therapy, he started to be able to move his arms and legs and eventually walk with a walker, but his movement was still limited. Doctors told him he would likely stop making progress at about 18 months.
While waiting for Ness to finish a therapy session, his wife, Karen Domenici, saw an advertisement for a study at George Mason University that was looking for patients with spinal injuries.
The poster had one pull-tag left—she pulled it and called the number.
The ad was for a clinical study done by Mason professor Andrew Guccione and his graduate students on incomplete spinal cord injury rehabilitation.
"[Patients] have been told that the body stops changing after a year, year and a half after injury,” said Guccione, chair of Mason’s Department of Rehabilitation Science in the College of Health and Human Services. “In large part, we've come to believe that's because people stop rehabilitation at that point because that is about where traditional health care typically ends and the literature on recovery runs out."
Ness working with graduate students at George Mason. Photo provided.
But through this four-year study, Guccione and the students have shown that isn’t true. The program combines exercise science and neuroscience research in a way that hadn’t been applied to this population before.
Guccione said the original concept for the program started after he was introduced to a new Mason student in 2014, Nicholas Balenger, BA Global Affairs ’18, who sustained similar spinal injuries at a beach. At the time, Guccione just intended to assist him in getting settled on campus.
He took two graduate students with him, both of whom had experience in sports performance training, and asked them, “If walking was your sport, how would you train for it?” The students came back with an idea for the program, which became a full-fledged research study when Balenger consented to be the first subject.
Brian Neville, a PhD student entering his fourth year in Mason’s rehabilitation science program, was one of the students who was able to help deliver the intervention in the research protocol with Ness. Neville has been a practicing physical therapist for nine years. He said the program was very different than what you would see in a typical clinical situation.
"The first lesson I learned was to check your assumptions at the door,” said Neville. “Here were people with spinal cord injuries in front of me exceeding people's expectations.”
Intensive training, constant encouragement and learning from mistakes are all part of the process. Patients participated in a series of planned movement drills for 90 minutes of exercise twice a week—walking forward, backward, sitting down and standing back up—all through only their own efforts and an assistive device such as a walker or crutches. With no attachment to stability equipment, the subjects relied on the two graduate students to ensure physical safety if they stumbled. Even a wobble was regarded as a necessary learning experience.
"It's funny now to see toddlers learning to walk; I almost recognize myself," said Ness, who went through two cycles of the 12-week program, one in the new rehabilitation lab in Peterson Family Health Sciences Hall.
Toward the end of the program, patients were encouraged to challenge themselves with such activities as walking as fast as they possibly could. Ness said other programs didn’t push him the way this one did.
“We had a neurosurgeon, a physician, and everybody saying he's [Ness] not going to improve very much more past [18 months],” said Domenici. “This study gave us an enormous amount of encouragement.”
Ness now walks with two walking sticks, a reminder of his days as a skier, but he can also walk short distances without the sticks. He even participates in assisted rock climbing events.
All 15 of the patients in the program were post-rehabilitation, said Guccione. In other words, they had finished the course of rehabilitation provided in the traditional health care system for these injuries and were believed to have reached the end of their recovery. But all those individuals showed change while engaged in this program, he said.
"[This] taught us that the body maintains its plasticity to recover for a far longer period of time than has been previously documented in the literature and appreciated by most health professionals,” said Guccione, himself a physical therapist for more than 40 years.
The clinical study has generated three dissertations, four published papers, and almost a dozen abstracts at national conferences. The program will also be tested to see if the movement drills can improve walking in patients with other conditions. Guccione and his team are seeking to adapt the program to individuals with Parkinson’s disease.