Running a marathon for me will be incredibly difficult, it is at the very edge of what I can and cannot do. It is important to know that running is something that is within my ability and I want to paint you a picture of how I move so you can understand that this is how I am pushing my boundaries. For you, your boundary could be completing an Iron man or it could be getting out of bed on your own. It is important to understand how you move so that you can safely push those boundaries out.
Cerebral Palsy (CP) is an injury that’s occurs at or near the time of birth. What I know about my initial injury is what my mom has told me and what I know about CP. At birth I had a lack of oxygen resulting in damage to my developing brain. There was a knot in my umbilical cord that likely formed during the birthing process. Initially I was blue at birth, but within my first full breaths as a new human, I pinked right up. At the time there was nothing to suggest anything other than a perfectly healthy baby. As I developed abnormal and lack of movements became apparent. Like most, my initial mode of mobility started with rolling. However, I skipped crawling altogether and went right to walking at the age of one. My mom remembers playing games like TAG with me to get me to crawl. Eventually I learned how to crawl just in a different order than most. As I began to walk more it was evident that I did not like to put my left foot down all the way and had difficulty moving my left leg. I was taken to many specialists with most saying I had a tight Achilles’ tendon and I would eventually grow out of it. The abnormal movements persisted and my mom continued to look for answers.
I was first diagnosed with cerebral palsy at the age of four at Shriners Children’s Hospital in Sacramento. The diagnosis is based on gross functional movements made through observation paired with an objective neurological exam and history of a complicated birth. I will have a dedicated post about the classification systems but for now know that I am a GMFCS level I. Treatment started with serial casting on my left foot and ankle. Serial casting starts with stretching the ankle up into was is known as dorsiflexion then the foot and ankle is casted in that position. It is the same type of casting you have when you break a bone. Every seven to ten days I would go in to have my ankle range of motion measured, stretched and cast re-applied. Doing this allowed for a long sustained stretch. I did this for about six months followed by physical therapy. Physical therapy for me included different exercises to help me play with my peers, participate in sports, and walk better. Most of the therapy was a home exercise program that I would practice on my own and then the therapists would progress me on a weekly basis. My mom remembers me being very religious with my exercises doing them as often as I could. To all my past, current, and future patients let this be a reminder to do your home exercise program, it is important! This all happened over the course of about two years after which I would go back to Shriners Children’s Hospital on a yearly basis to be re-assessed. I would update them on how I was moving, the current sports I was playing, and what I was hoping to do next.
Growing up I participated in as much as I could in sports and other activities my peers were engaged in. I played basketball, baseball, and soccer. I played the piano and guitar. I did everything a typical child would do just in a different way. I had to think about how I was walking and running since just doing it did not just come naturally to me. I would watch how other people walked and tried to imitate them. I would compare what my right foot was doing and try to get my left foot to do it too. I had to come up with alternative strategies to my activities like placement of my left arm to be comfortable using my left hand to play the guitar or piano. It took me longer to learn how to hold and swing a bat while maintaining my balance. When it came to uneven or more challenging terrain I planned by route before I went to prevent any trips or falls. It was never a matter of if I could do it or not it was just a matter of how I was going to do it.
Having CP affects many areas of my daily life. For me the left side is effected, primarily my left leg, but it also affects my left arm, and left side of my face. I have increased tone and spasticity resulting in a limp as I walk and run. I have tightness throughout my left side making it difficult to move smoothly making me think twice about things like going up stairs, climbing a fence, or walking over a slippery surfaces. I have difficulty with coordination requiring more effort for tasks like typing with my left hand. Throughout the day you will see me trip over invisible objects on the floor with increased frequency as I get tired because it is difficult for me to lift my left foot. I have clonus so when I place weight on the bottom front portion of my left foot, get nervous, or my attention is taken away from controlling my body my left leg shakes. Fun fact, this is known as an abnormal reflex due to injury to the brain or spinal cord and I often get to show my patients how to they can control it and how I can illicit it in myself. When I give presentations I will shift my weight a lot and walk around because I am trying to get my leg to stop shaking and the more I get nervous about it the more pronounced it becomes. When I do not stretch and exercise like I should I develop hip, knee, and back pain. On the flip side if I over do it the same type of pain comes on and is likely due to an overuse injury.
It’s a careful balance of not doing too much and not letting my own body consume me. I strive to develop myself everyday and on the days I do not it shows. I take time throughout my day to think about how I am walking, what my posture is like, and how relaxed versus tense I am. Doing this allows me to reset things, practice better movement patterns, and bring awareness to poor positions. Currently, I run three to four miles two-three times a week, lift weights four days a week, and one day of yoga. I also use a device that provides electrical stimulation for neuromuscular re-education that I incorporate with my daily exercises. Movement for me quite literally keeps me moving. I love to push my boundaries and work on seeing how I can progress forward. For me, having CP is like playing a game of tug of war. Each day I have to hold onto that rope and stop CP from taking my movement away. Hopefully I can gain just one step in my direction for increased mobility. Even if I just hold my ground for the day that is a win for me. There will always be tomorrow where I will be able to pick that rope up and try again.
What is your story of how you move? I would love to hear from you! If you have never taken the time to think about how you move I encourage you to do so. You might be surprised by what you find.