Cerebral Palsy is mainly a physical disability. From the outside, CP might appear to be a condition that only affects my legs. Cerebral Palsy was caused by a lack of oxygen to my brain during birth. I have spastic Cerebral Palsy. According to Johns Hopkins Medicine, spasticity is “abnormal muscle tightness due to prolonged muscle contraction. It is a symptom associated with damage to the brain, spinal cord, or motor nerves.”
For me, the amount of physical pain I experience daily has increased significantly as I’ve grown up. Many things influence the level of spasticity I experience at any given time. My mood is one of the most important factors in the amount of spasticity I experience on any given day. When it comes to intense emotions, this is especially true.
If I have a day where the pain is particularly severe, I may not want to do much. Please don’t take this personally. It’s not that I don’t want to see friends and family or go out. It might be that my legs are too tight to move around quickly. If I spend a lot of time walking, it can also lead to more spasticity the next day.
Environmental factors such as the temperature or weather can also affect my pain levels. I am used to frigid winters and hot summers, having grown up in New England. I don’t like being outside in the cold for lengthy periods of time since it makes my spasticity worse. After being out in the cold, I prefer warm showers and my heated blanket. Ordinary things become more difficult for me as a result of this. The same is true for hot summer days. I don’t care to spend all day at the beach.
The change in my level of functioning and the related fatigue were the factors that led to me getting my first power wheelchair at 13. It was only because of my stubbornness that I waited until 13 to get a power chair. Now that I will be 23 years old this year, I can’t imagine not having my power wheelchair.
I will grow frustrated if I can’t do as much one day versus another. Please don’t confuse me as being lazy or someone who isn’t trying hard. Even in ideal circumstances, every day is a challenge with CP.
Sources:
“Cerebral Palsy AND Post-Impairment Syndrome.” Edited by Gina Jansheski, Cerebral Palsy Guidance, Cerebral Palsy Guidance, 19 Sept. 2020, http://www.cerebralpalsyguidance.com/cerebral-palsy/associated-disorders/post-impairment-syndrome/.
“Spasticity.” Johns Hopkins Medicine, Johns Hopkins Medicine, http://www.hopkinsmedicine.org/health/conditions-and-diseases/spasticity.