Cerebral Palsy is a challenging disability to live with. As I’ve grown up, I’ve experienced more mental health issues related to my disability. At times, the physical symptoms are also very frustrating. During puberty, I began to experience more pain due to my Cerebral Palsy.
Spasticity is a disorder characterized by an unnatural increase in muscular tone or stiffness, which can impair movement, speech, or cause pain. Damage to brain pathways controlling muscle movement in the brain or spinal cord is the most common cause of spasticity.
Factors such as mood, weather, and stress can all impact the level of spasticity I experience at any given time. When it comes to frustration and excitement, in particular, my spasticity will increase. Extreme temperatures also affect my spasticity. In the winter, it’s often hard for me to spend time outside. This is also the case during hot summers. In the spring and fall, when temperatures aren’t too extreme, movement is much easier for me.
I also have a distinctive gait that is commonly seen in people who have Cerebral Palsy. Flint Rehab states, “A scissoring gait is characterized by the knees and thighs pressed together or crossing each other while walking.”
The cause of this gait is high muscle tone (spasticity) in the hip adductors. The muscles that bring the thighs together are known as the hip adductors. Internal hip rotation occurs due to the continual contraction of these muscles, and the upper section of the legs cannot separate during walking.
My scissoring gait also makes activities of daily living challenging. In particular, showering, dressing, and toileting are difficult. It is hard to shower thoroughly when my legs are crossed involuntarily. Sometimes my PCA has to hold my legs apart so I can wash up. It also makes getting dressed a challenge. My legs will automatically cross when I’m trying to get dressed.
Because of my cerebral palsy, fatigue is also present every day. Walking and moving around quickly causes exhaustion. Routine tasks take me longer to complete. It takes a lot of energy to function on a daily basis with CP. When I was 13 years old, fatigue was the main reason I wanted to get a power wheelchair.
When it comes to physical activity, I expend far more energy than my nondisabled peers. According to the American Academy for Cerebral Palsy and Developmental Medicine, people with cerebral palsy may need 3 to 5 times more energy to perform the same amount of work as their peers in terms of effort, persistence, muscle control, and concentration due to the way CP affects how people move. People with CP have to work hard even when they are at rest. I frequently experience symptoms of restless legs while I sleep. This is what led me to begin taking Gabapentin as a teenager.
In my own experience, I’ve found life with CP to be exhausting. Walking around the grocery store or mall makes me feel like I’m in a road race. It feels like I’ve run a marathon when I complete a physical therapy session.
Cerebral Palsy is challenging to live with every day. Please don’t think that I’m lazy, though. It takes so much energy to function every day with CP. I’m only human and only do so much.
Sources:
“Scissoring Gait and Cerebral Palsy: Causes, Risks, & Treatment.” Edited by Barbara Brewer, Flint Rehab, Flint Rehab, 26 July 2021, https://www.flintrehab.com/scissoring-gait-cerebral-palsy/.
“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/.
Rivelis Y, Zafar N, Morice K. Spasticity. [Updated 2022 May 3]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2022 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK507869/