I wake up in the morning and the first thing on my mind is, “What am I going to have for breakfast?” Eggs, bacon and a mocha latte sound great. Instead I settle for a bowl of Special K with strawberries and a cup of regular coffee. About 10 years ago, I would not have blinked at a high-calorie meal. Today not only do I try not to eat whatever is in front of me, I must think about how to increase my physical activity level.
My disability prevents me from burning calories as easily as others. Arthrogryposis multiplex congenita (AMC) is a rare birth disorder that causes most of my joints to be fixed. I am unable to walk and use my feet for almost everything.
Because it is such a rare disability, there is not much information regarding fitness for people with the condition. Able-bodied people who walk through the parking lot to their car burn approximately 16 calories. I do not have the privilege of burning numerous calories throughout the day. Instead, I have to try to keep my calorie intake down and increase my exercise on a regular basis.
Most of my strength is in my lower extremities. I have invented different stretches and bends to keep myself limber, but I also keep it fast-paced enough to create a cardiovascular workout. Swimming, by far, is the greatest exercise for me. My body is free to move around and there is no impact on my joints. Unfortunately, it is inconvenient to go swimming on a regular basis.
It is apparent that regular exercise is important in anyone’s life. I believe it is even more important for a person with physical limitations. Not staying fit will cause problems. Independence is very important to me. As of now, I am able to do all my own transfers. If I can keep my weight down and stay flexible, I will be able to stay independent. If I lose strength and/or increase weight, however, it will require more personal care assistant (PCA) time and decrease independence. I am a person with a full social and work schedule. Staying fit increases my energy and stamina. It is always good to have enough energy to keep up in a world that makes little exception for those who have disabilities
