My balance has always been effected by cerebral palsy. Ataxic CP is the category of cerebral palsy I’m challenged by. It is a rare form of CP, affecting just 5-10% of cases. One of the attributes of ataxic cerebral palsy is its disruption of physical balance. Generally speaking, it’s more difficult for me to balance than it would be for an able-bodied person. Balance is defined as an even distribution of weight enabling someone or something to remain upright and steady. Balance has also been described to me as the combination of strength and stability. I’m no medical expert and this post has more to do with my challenge than medical research. My balance came to mind as a topic on a trip last week. While attending a college basketball game, we had to ascend and descend stairs to reach our seats. Surprisingly for half the journey to the seats there was no handrail. Once we reached our seats in the gym, I became concerned about my ability to walk back down the steps. It didn’t dawn on me at the time, but after making it down and back up the stairs a couple times, I later realized my balance on those steps had improved. Descending the steps at Gill Coliseum felt easier that night than in the past and my curiosity settled on what may be the reason.
As life began, so did physical therapy. One of the major areas of concern was my balance. I achieved each stage of movement after my peers. It took longer for me to learn how to sit upright, crawl, and finally walk. In the early stages of life, I wore high-top shoes with supportive inserts. The shoes helped support the ankles throughout my work with the physical therapist. Much of my time was spent rolling around on a therapy ball learning to control my body in space. As my tireless work with the therapy ball continued, the strength to control my body in space slowly improved. Soon I was able to roll around on the ball more independently and began gaining the balance and strength to walk on my own. After a few years of moving around with the help of my high-top shoes, I could balance myself without the requirement of those high-tops and specially made inserts for them. I was on to my next challenge of walking in a more varied selection of shoes.
Through hard work my footwear had graduated. I still couldn’t pick any shoe that caught my eye, but there became more options than a high-top. Another type of insert was created for my shoes. This time it provided less support in the way of balance. While trying on a new shoe, I was required to make sure the new insert fit. I recall during that time, some of the shoes I really liked were unavailable because my insert sole didn’t fit inside. Cerebral palsy had me settle for the runner up. However, I was moving away from the required high-top, so things were looking up. While wearing the less supportive insert for the next couple years I gained strength and balance throughout my body. My time in physical therapy had ended and I was reaching the time in life where kids play outside. All the work I had done in physical therapy had provided strength for a less supportive shoe and the balance to play outside.
Growing up we did everything outside. We played all kinds of sports with friends in the neighborhood, rode bikes, and built forts. It was probably important for us all to be outside gaining strength and stability as we ran from here to there. Soon my stability lead to graduating into another type of shoe. Finally, my balance had gotten to the point where the insert soles weren’t necessary anymore. I remember it very distinctly. We went into a shoe store and finally I was able to look at the wall of shoes and pick any shoe I wanted. No longer would my choices be hampered by the space for an insert inside the shoe. It was one of the first tangible milestone I experienced in reducing the symptoms of cerebral palsy. I recall being fearful moving around in a shoe without extra support for the first time, not knowing if I could truly keep my balance. It turned out to be just fine. After a few days of unsteady feelings, I got the hang of it and was back outside playing with friends.
It really didn’t occur to me until this week how important those days spent playing outside may have been. It seems our balance can be broken up into two parts. There is the physical part of balance along with a cognitive piece. A signal is sent from our brain to control our physical movements, letting our muscles know how to remain balanced. That connection seems to require early activation in order for our bodies to learn how to move in space. Without early physical therapy and the time playing outside, the balance I have today would probably be much less. The blessing of natural athletic ability seems wasted without beginning the process of learning to balance and manipulate a body early in life. Cerebral palsy throws a complication into the natural ability to learn athletic movements. The natural connection occurring between the brain and muscles seem to be hindered in my case.
It seems from the limited experience with training there isn’t a way to directly strengthen balance. Our balance is controlled by small stabilizer muscles throughout the body. These muscles are generally smaller and often referred to as fast twitch muscles. They fire more rapidly helping us regain balance quickly upon losing our equilibrium. The fast twitch muscle, like our other muscles, are controlled by the transfer of signals from the brain. As I understand these muscles, they are strengthened in a supplementary fashion, while working a larger muscle group. A stabilizing muscle is supporting a larger muscle like your shoulder or bicep by keeping the weight steady as you lift. The smaller fast twitch muscles are located throughout the body to help us remain stable.
In my case, the stabilizing muscles are among the most important to strengthen. They are the muscles keeping me balanced and seem to be the weakest in my body. The strength I have in larger muscles is sacrificed because my fast twitch muscles struggle to balance my body. Their strength would give me the ability to use the strength I have in my larger muscles. So, everything my trainer has me work on forces the use of these stabilizer muscles. The method requires movements without the use of support. It’s rare for me to lift any weight while in a seated position, which mean we seldom use a bench or machine during a workout. Working out in this manner also challenges the neurological pathways from my brain to the muscles, which are inhibited by cerebral palsy. The continued stress on those pathways through training keeps them firing on a consistent basis. It insures my strength and balance don’t deteriorate, but instead continue to improve. The overall consequence of our work came to mind during the college basketball game at Gill Coliseum.
Being seated in the upper reaches of a stadium or arena is challenging. Throughout my life I have lacked the balance to comfortably move up and down steeper flights of stairs. The previous feelings of apprehension left me shaky as I began moving down the steps of Gill Coliseum during halftime. My dissension of those stairs began with some wobble, but after the first couple downward strides I felt more balanced. As I reached the final few steps my comfort moving down toward the concourse improved. When we walked down those steps after the final buzzer my confidence around walking down those arena stairs had greatly improved. It was superior to the confidence I had in years past. The work in the gym had strengthen the stabilizing muscles and my body was slowly relaying to my brain that I had more stability in those situations. The steps were still nerve-wracking, but my balance is getting better. I feel more comfortable in my ability to walk down stadium steps. It seems the comfort will only grow as my work with the trainer continues.
Cerebral palsy can be a complicated physical disability. There seem to be multiple ways to challenge the symptoms it provides. Ataxic cerebral palsy continues to make attempts to strip away balance. The knowledge cerebral palsy isn’t a progressive disability encourages the will to fight against the disability. I have found through my life, the effort to challenge CP often improves my quality of life. Working diligently to improve my balance might be the best example of that life improvement. The opportunity to strengthen something cerebral palsy tries to take away has become a gift. As I descended the steps at Gill for the second time, I felt the hard work paying off. It’s a small sign the hard work to improve cerebral palsy is working. I may never enjoy the comfort you do while walking down a flight of stairs. But, then again I guess you never know…
A Journey With Cerebral Palsy 