Written by Sue Sandwick, P.T., DPT, NCS
In the blink of an eye, life as you know it is changed forever. A freak accident has you lying motionless in a dark, whizzing MRI tube. As you lie on your back looking up, you try to move anything from your shoulders down to your toes, but you can’t. In sharp contrast to your body, your mind is racing. How did this happen? What will I do? What about the concert this Friday? What about graduation this summer? What about my relationship that has been going well? What about my future? Your thoughts are interrupted by the neurosurgeon who tells you that your vertebrae are crushed, and your spinal cord is severely compressed. You need surgery immediately to stabilize your spine and to take the pressure off your spinal cord. As you wake after surgery, hope is slowly replaced by dread. There is no feeling in your legs, and they do not respond to your mental commands to move. The realization hits you like a ton of bricks: you will have to start over and learn to exist inside a completely different body.
After experiencing a spinal cord injury (SCI), most individuals live in a hospital-based rehabilitation unit for four to eight weeks and undergo extensive rehabilitation therapy. The aims of therapy are to restore functional ability and to gain the skills necessary to re-enter life. Traditionally, upon discharge from the rehabilitation unit, patients are given information about community disability services and are sent home with the expectation that they will re-enter their lives and become engaged, productive, active and healthy. In reality, once SCI patients are discharged, they generally do not become physically and socially active, and this predisposes them to significant health risks.
Studies have clearly demonstrated that people with SCIs are at increased risk of developing cardiovascular disease and diabetes. Physical inactivity that is related to impaired mobility very commonly leads to a sedentary lifestyle. This sedentary state predisposes SCI patients to a heightened risk for obesity, body composition changes (loss of lean body mass and increased fat mass), lower basal metabolic rate, blood lipid abnormalities, glucose intolerance and increased risk for pressure ulcers. In addition, decreased physical capacity leads to a loss of independence, which can lead to feelings of social isolation, ineffectiveness, hopelessness and depression. There is a need to address and solve transitional challenges for SCI patients, providing post-rehabilitation programming for mobility, access and ongoing health maintenance, as well as preparing individuals for an active life.
Based out of the University of Utah, TRAILS (Therapeutic Recreations And Independent Lifestyles) is an SCI outreach program designed to address this post-rehab need and to prepare individuals with SCIs to engage in active living through recreational experiences, adaptive sports, exercise and wellness programs, as well as comprehensive, SCI-specific education. These programs and resources have served as a continuum of care and a critical extension to hospital-based rehabilitation. TRAILS offers a variety of adapted sports and recreation programs, including year-round cross country skiing, handcycling/spinning, swimming and wheelchair tennis, as well as seasonal downhill skiing, kayaking and sail boating. These programs provide individualized adaptive equipment and assistance as necessary. Specialists in physical fitness, nutrition, massage and yoga are fully trained about SCIs and form a unique, supportive team that proactively engage SCI patients in individualized programming. TRAILS is open to sharing these benefits and welcomes any individual who has experienced a SCI to participate. Currently, more than 700 individuals receive ongoing communication about activities and events. Clients, as well as their friends and family, are guided into appropriate programming, and the team assures a safe, appropriately adapted and successful experience. The hope and eventual goal is that these individuals will not only participate with TRAILS, but they will ultimately become more independently active.
Scientific evidence demonstrates the physical and psychological benefits of a well-rounded, activity-based wellness program, such as that of TRAILS. This programming not only activates a sedentary lifestyle but also can have a positive effect on one’s overall risk for cardiovascular disease and chronic conditions via individualized strength training, cardiovascular conditioning, nutritional awareness, weight management and stress management.
“There’s this stigma that comes with SCI that it’s a death sentence. It isn’t.” says Stan Clawson, a TRAILS participant who was paralyzed 16 years ago. “When you leave the hospital, you look at the world through a cocktail straw. A comprehensive program like TRAILS shows people how to transition into a life of mobility and all the possibilities. Then, with each activity, your horizon opens up. You are looking through a windshield, then a convertible, and then you’re flying. Walls break down and it pushes you into the growth zone, giving you a positive distraction. When you are kayaking on that lake, and your wheelchair is sitting there on the dock, you aren’t thinking about the world of disability.”
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