Restore
July 1, 2013

Ever since the bombing at this year’s Boston Marathon, there’s been much discussion about the long-term ramifications for the victims who lost limbs. Although there are obviously physical obstacles to navigate, there are often as many psychological hurdles.

“People have to adjust to a new body image and manage their losses, both of the limb and the changes that amputation causes in their lives,” says Stephen Wegener, director of Rehabilitation and Neuropsychology in the Johns Hopkins Department of Physical Medicine and Rehabilitation. “They may also need to deal with depression, which occurs in about 30 percent of patients. And if it’s a traumatic injury, they may have to deal with post traumatic stress disorder.”

Still, Wegener says, people are remarkably resilient and will bounce back quicker than most would imagine, even after such a devastating injury. Part of their recovery clearly hinges on the support system around them, not to mention the patients themselves. With that in mind, Wegener and his colleagues strive to help patients take charge of their own recovery by providing self-management programs.

“Self management is grounded in the idea that patients can and should take an active role in managing their condition and recovery,” Wegener explains. “Among other things, self-management provides  knowledge, training in monitoring their activity or pain levels, problem solving and practicing in other skills needed to function.”

Those skills could include the most basic things—like planning doctor visits —or the less tangible, such as relaxation methods or positive thinking. “There’s also social recovery,” Wegener explains. “The other people in the patient’s environment need to respond and adapt. You have this multifaceted biological, physical, social and emotional recovery, and it often takes place over the course of months and years.”

At Johns Hopkins, Wegener says, the Department of Physical Medicine and Rehabilitation begins efforts during the patient’s hospitalization. “Our patients also have access to the complete team of physicians, physical therapists, occupational therapists and rehabilitation psychologists, so we’re able to attend to the entire spectrum of needs. The team, including the patient, works together to facilitate the patient’s recovery and adapt to life with limb loss.”

Indeed, much of Wegener’s work has focused on creating resources that help patients manage the struggles associated with amputation. That includes the PALS program—Promoting Amputee Life Skills—a 10-week group course that helps patients cultivate their self-management skills and achieve a higher quality of life. “We’ve developed a number of programs that empower patients to learn skills, identify problems early, track their progress so they can participate in their own recovery and do things to improve their outcomes,” Wegener says.