On Tuesday, I enjoyed a belated birthday celebration with my family. After dinner, my mom was talking about outdoor activities that are accessible. As a child, I participated in a variety of different activities including swimming, kayaking, and biking. However, it is much more difficult for me to engage in physical activity than it used to be.
Cerebral palsy doesn’t progress over time. However, I have experienced functional shifts and increased pain as I’ve gotten older. At 13, changes in my level of function and fatigue led me to decide that I needed a power wheelchair.
At the time, I thought using a wheelchair meant I was a failure. I feared that I would become dependent on the wheelchair. I had no idea how much freedom a wheelchair would give me.
My ability to function was not the same once I hit puberty. I began experiencing chronic pain and my spasticity increased. I slowly lost the abilities that I once had. I could no longer crawl on my hands and knees or use forearm crutches.
Along with decreased mobility, I began to experience chronic pain as a teenager. Pain often makes it difficult to function every day. I don’t want to shower or do much of anything when the pain is overwhelming. Sleeping is nearly impossible some nights when I am out of Gabapentin which helps relieve the symptoms of restless legs. If I don’t sleep well, I can’t think very well the next day.
It takes so much energy to function every day. According to the American Academy for Cerebral Palsy and Developmental Medicine, because cerebral palsy affects way people move, people may have to use 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. Unfortunately, this means that mundane tasks like grocery shopping can be exhausting for people like me.
I prefer to get things done early in the day. While some people don’t like getting a haircut or going grocery shopping first thing in the morning, I have more energy in the mornings. Typically, by 7:00 PM, I am ready to relax for the night.
I don’t make many social plans at night. I can’t stay out late with my friends. I don’t like going out late on the weekend.
Luckily, my friends are understanding when it comes to my cerebral palsy. They don’t force me to go out if I’m too tired. I’m happy to relax at my apartment.
According to the National Institute of Neurological Disorders and Stroke, the majority of adults with cerebral palsy develop post-impairment syndrome. Post-impairment syndrome is characterized by pain, fatigue, and weakness caused by muscular abnormalities, bone deformities, overuse syndromes (also known as repetitive motion injuries), and arthritis.
I wish I’d known how cerebral palsy would impact me as an adult when I was younger. I adjust as my cerebral palsy changes. As joints stiffen and muscles tighten with time, my body endures and adjusts. I do my best to keep up with my ever-changing body.
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/.
“Cerebral Palsy.” National Institute of Neurological Disorders and Stroke, U.S. Department of Health and Human Services, http://www.ninds.nih.gov/health-information/disorders/cerebral-palsy. Accessed 20 Sept. 2024.
Kumar, Devina S., et al. ‘Adults with Cerebral Palsy: Navigating the Complexities of Aging’. Brain Sciences, vol. 13, no. 9, MDPI, 2023, p. 1296.
Whitney, Daniel G., et al. ‘Age Trajectories of Musculoskeletal Morbidities in Adults with Cerebral Palsy’. Bone, vol. 114, Sept. 2018, pp. 285–291, https://doi.org/10.1016/j.bone.2018.07.002.