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Thursday Aug 29, 2013

Adaptive Sports, Peer Support Give Patients New Perspective

You could feel the discouragement just walking in the exam room door.

Roy sat with his head down and shoulders hunched. His cane was propped against the wall. As the preceptor in clinic, I had been asked by our third-year resident to meet Roy, a 50-year-old patient with diabetes who recently had lost his leg and was having a hard time learning to walk on a new prosthesis.

Readers of this blog may know that I wear two prosthetic legs since an accident long ago, but when I walked in the room Roy didn’t know that. With just a glimpse of my carbon fiber ankles, his eyes flew open wide.

“But how can you be an amputee? You’re the doctor!”

It was just a glance, followed by a few words of encouragement and direction to a couple of resources for amputees, but Roy walked out of the room smiling, his back a little straighter, his perception of living well with amputation altered.

Driving home that night, I couldn’t help but ask myself what was it that had brightened Roy’s day, and what had made it possible for me to successfully walk that same path of uncertainty so many years ago?

For me, three reasons came to mind.

The first images to meet my eyes when I woke up in the ICU after my accident were those of amputees engaged in sports. My best friend had gone online, found photos of people wearing prosthetics while doing crazy, fun things, and posted them throughout my room.

Secondly, as a lifelong skier, every ski season has started with a viewing of one of director Warren Miller’s fabulous ski movies. Warren has always included images of adaptive athletes, kicking it on the mountains, in his movies. These images were planted so deeply in my mind that, on my first night out of the ICU, I sat on the edge of my bed visualizing making my first turns on a snowboard while wearing a prosthesis that I had yet to even see.

It was a gift from the filmmaker that I hadn’t even known I had received.

And lastly, but perhaps most importantly, my family physician and friend Tim Dudley, M.D., made me call the National Sports Center for the Disabled (NSCD) from my hospital room before I went home.

The NSCD is one of the nation’s oldest and largest adaptive sports centers and helps people with disabilities discover joy and freedom beyond their perceived limits of disability. It offers skiing in the winter, as well as summer activities such as bike and horseback riding.

 With help from the NSCD, I rediscovered the mountains and the thrill of skiing. And together, we introduced a new device, the ski bike, to the North American adaptive ski community.

The great thing about skiing for people with disabilities is that a physical activity that may have been limited by muscle strength or discomfort can be overcome by adaptive equipment and the power of gravity. With adaptive skis or a ski bike, people with disabilities find freedom through speed and movement and the joy of keeping pace all day with their family and friends.

Whether it's skiing, horseback riding, kayaking or any other activity, with the NSCD, people with physical challenges can find ways to enjoy the outdoors and lead an active lifestyle. And it isn't just about sports. Recreation is for everyone, and the benefits -- physical, mental, social and spiritual -- are transformative for body and soul.

Adaptive sports programs also helped connect me with others facing challenges. I met and saw peers who are active and drew inspiration from their experience. It broadened my perception of what is possible, not only in sports but in life.

Perhaps most importantly, organizations like the NSCD are also "stealth" peer support programs. Lessons are personal, visual and more powerful than any printed words, website or stories -- even those from a physician or therapist. For people with physical challenges, peer support can replace self-images of disability with images of ability.

What had brightened Roy's day and what had helped me so much was the power of peer support, which helps us understand we are not alone by allowing us to learn from those with the same challenges.

Groups like the NSCD and the Amputee Coalition certainly helped me with the nuts and bolts of dealing with amputation, like how to ride a bike, travel and even how to answer the questions of inquisitive children at the pool. ("Who would ever guess that sharks could live in chlorinated water?")

More importantly, these groups provided me with life lessons on how to live in a different body.

My hope for you as family physicians is that the next time you sit across from a patient who is discouraged with a new diagnosis of a disease or disability, you will find a way to offer him or her hope through adaptive sports and peer mentoring programs. Remember, peer mentoring programs are not just for people with disabilities; they have been proven to improve lives and outcomes for patients with diabetes, arthritis and even cancer.

Need a few starters? The NSCD is based in my home state of Colorado, but there are adaptive sports programs in almost every city and state in the country. Disabled Sports USA has dozens of chapters nationwide and is a great resource to connect people of all abilities with recreation and the outdoors. Most chronic diseases have online support groups and resources, as well.

Recreation and peer support help people become more active, confident and independent.

Your short conversation, invitation or encouragement can make a huge difference.

Just ask Roy.

Jeff Cain, M.D., is President of the AAFP.

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