Life after spinal cord injury: understanding the challenges

When the delicate spinal cord is injured, life can change in an instant. “Spinal cord injury is sudden and unexpected,” says Mark Tonack, a Toronto Rehab scientist. “Suddenly, you may not be able to control your hands or feet, drive or go to work. The injury has a huge impact on your identity and your life.”

Tonack has spent much of the last 15 years studying the impact of spinal cord injury (SCI) and the challenges people face when they return to community living after an injury of this kind. In one study, Tonack and colleagues found that people in this situation encounter a whole range of social and personal barriers.

“Many find it challenging to return to work,” says Tonack. “Often their personal and social relationships undergo significant change. At the same time, they’re under pressure to find a suitable place to live, arrange attendant care and

select appropriate assistive technology. Typically, it can take anywhere from six months to two years for an individual to feel comfortable after returning to the community.”

Tonack is the principal investigator for the Long-Term Follow Up Project, a research initiative which records the progress of people with SCI in a large-scale database. “We’re looking at community integration but also at general health, and the effects of aging with spinal cord injury,” Tonack explains. The database has information on more than 800 people and allows researchers to track how their health changes over time.

“For the database, we collect a relatively small set of information on a large number of people. This allows us to develop an overview and to target specific issues for further research. In effect, the database gives us ‘the big picture,’ and then we design projects to study specific issues in more depth.”

Earlier studies have shown that pain and psychological distress can be significant barriers to achieving a good quality of life for people with SCI in the community. To explore this issue, Tonack is studying rates of chronic pain and psychological distress and what effects they have on this population.

An anthropologist, Tonack brings a special skill set—the qualitative research methods of anthropology—to his work. “Qualitative research—which gathers and studies people’s insights and perceptions, rather than numerical data—complements quantitative studies of disability,” he says.

Tonack is determined to produce concrete results through his research. “I think research and science have a practical role to play in helping people make the transition to productive community living,” he says.

One practical result of Tonack’s research is a unique resource for people with spinal cord injuries and for clinicians. The Spinal Cord Injury Peer Information Library—or SCI PILOT—is an online guide to a dizzying array of assistive devices, from transfer aids to special vehicles and computers. And the information comes from people with first-hand knowledge.

“Information on SCI PILOT is primarily supplied by people with spinal cord injuries, drawing on their experiences and their perspectives,” says Tonack. It’s also used in rehabilitation schools across North America as a study guide for students.

Although a great deal of progress has been made in treating and rehabilitating people with spinal cord injury, there are still significant barriers to community living for many of these people, according to Tonack. Assistive technology, while very good, is also very expensive—often beyond the reach of people with such injuries, and their families. Insurance does not always cover the cost of this technology, or of the necessary retrofits of the home environment. Suitable housing is also in short supply.

“I’ve done a lot of research involving people with spinal cord injuries and have learned a great deal about their circumstances,” says Tonack. “Even so, I’m conscious of how much more I have to learn. I see the challenges and the barriers people with SCI face, yet I know that only they can truly understand the experience of living with this injury. It’s rewarding to see how determined they can be, and how they can rebuild their lives. For me, it’s gratifying to work with these people to help them achieve a better quality of life.”