I wrote about the need for greater patient knowledge in the post Anatomy 101 – Why You Should Know Your Body. The concept of the empowered patient has been translated into action in many common medical problems in both pediatrics and adult medicine. The management of a person with newly diagnosed diabetes provides an excellent example. As soon as the patient is stabilized, the entire family is enrolled in an intensive educational program. They are taught the best management principles and most importantly, they are usually shown graphic examples of what happens if there is non-compliance with the recommended treatment programs. Diet, exercise and medications are not presented as optional.
One of the most significant problems for the child with an early onset neurological problem is the struggle to maintain basic alignment of the body. Muscles that are too weak or too tight (spastic) cause predictable distortions of the bones and joints of a growing child. These distortions lead to chronic musculoskeletal pain in adulthood. In my teaching career, both in North America and Europe, I have been surprised by how little parents of affected children understand the need for braces and splints to maintain body alignment. The orthosis is prescribed, but use is semi-optional. Often they are discontinued because the child does not want to look different!
The first step to achieving better use of braces and splints is better understanding of the problem. I strongly doubt that any parent would willingly follow a course of action that led to their child living a life of pain. These two books offer an understandable glimpse into the biomechanics of how bodies work. The Concise Book of Muscles allows both parent and child to visualize the problem muscle(s). The Anatomy Coloring Book goes further and explains in greater detail how the muscles work together to produce a movement. Your aim is not to know it all. In this situation, a little knowledge is a very good thing.