CW: Depression
Cerebral Palsy is challenging to live with. Lately, I’ve been experiencing increased spasticity, particularly in my lower extremities. Chronic pain affects me physically and mentally.
Spasticity can cause difficulty with completing activities of daily living. For me, spasticity makes dressing, toileting, and showering difficult. The amount of spasticity I am experiencing can change throughout the day as well. Factors such as the weather, my mood, and fatigue all affect my spasticity.
While my diagnosis hasn’t changed, its impact on my quality of life has. I cannot walk long distances anymore and experience more involuntary movements, especially in my legs. Besides being annoying involuntary movements make daily activities like showering and toileting more difficult.
In the shower, my legs often scissor. This makes it hard to get cleaned up. Sometimes my PCA has to hold my legs apart so I can wash up. Involuntary movements also happen when I’m in bed. When my legs are crossed, it’s hard to sleep.
When I am flat on my back, my back will often arch. My hands are usually clenched into fists when I am laying down as well. Not having control over your movement is frustrating.
Puberty was when I first experienced functional shifts. This was frightening. I slowly lost the abilities that I once had. I blamed myself. Looking back, this was when I started to develop depression. It made me sad that I couldn’t do as much as I used to.
I could no longer crawl on my hands and knees, and using forearm crutches became harder. When I was 13, I decided that I needed to get a power wheelchair. I was upset that I needed a wheelchair. At first, I was embarrassed to use it. Today I can’t imagine not having a power wheelchair. I’m much more independent with my wheelchair.
When I went through a growth spurt in my teens, chronic pain was suddenly much more prevalent in my daily life. During my senior year of high school, I had finished growing, but chronic pain was still there. In particular, I had severe pain in my hips, which made it hard to sit in my power wheelchair. The pain turned out to be from an overuse injury, and with some rest and some adjustments to my posture, I was much more comfortable.
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.
I adjust as my disability changes. I look for ways to keep up with my ever-changing body. I’ve learned to cope with the pain that I experience. However, I do experience frustration at times.
Amid all of the changes and challenges I face, I try to remain grateful. I’ve met many excellent teachers, doctors, PCAs, and therapists. They don’t give up on me, which means more than they know. I am blessed to have a loving family and wonderful friends as well.
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/.