I found out from the Cerebral Palsy Support Group Facebook page that March 25th is Cerebral Palsy Awareness Day. By association, that makes March CP awareness month (don’t worry, I Googled it. It’s true). In honor of that I will write about CP ‘trivia’ this month. I believe awareness means knowledge. As with just about anything, there are many misconceptions about CP. If we want to spread awareness, we have to spread knowledge.
So I’ll start with What Is CP?
Cerebral Palsy is brain damage. It affects muscle tone and control and motor skills; in varying degrees. It is known as a ‘blanket’ or ‘umbrella’ term, because there are many different types and severities. I have spastic ataxic CP. That means I have too much muscle tone (spastic) in some areas, and not enough muscle tone (ataxic) in others [livestrong.com]. Translated into actual English, this means that my muscles are too tight in some places, and too floppy (uncontrollable) in others. For example, my hamstrings are so tight that I can’t straighten my legs, but I have such little tone in my toes and ankle that I can’t wiggle my toes or rotate my ankle. I have read that you can have diplegia, affecting just the legs, hemiplegia, affecting one side of your body, or quadriplegia, affecting all four limbs. To me it seems that it affects both my legs (left worse than right), but only my left arm, so I’m not sure where that leaves me
The severity of cerebral palsy can range from barely noticeable to being in a wheel chair with a headrest. I once worked with a girl that after asking me if I had CP, told me that she could tell because she did too. Had she not told me, I would not have known. However, I have seen many people that are in a wheelchair with a head rest, unable to talk or feed themselves. Seeing those people always helps me remember that though I have a lot of challenges, there is so much, like my independence, to be grateful for.
Specifically, CP is neurological damage and how it affects motor skills, but there are a lot of associated conditions that can go with it. I read on cerebralpaslyorigins.com that 65% of people with CP have intellectual impairment. I am very blessed that I am not intellectually impaired, and seeing that number made me realize just how blessed I am. Other common problems are epilepsy, hearing impairment, or vision impairment. For lack of muscle control, it can also cause drooling and incontinence (cerebralpalsyorigins.com).
Cerebral palsy does not worsen over time. That is, the damaged area of the brain does not worsen. As I have discovered in the past few years, the effects of it do worsen. For example, when I was a kid, the only trouble I really had with it was that my back would hurt if I sat on the floor or in the bath tub, and once in a while my ankle would hurt. I could walk or run as long as I wanted to without much trouble. I could do everything everyone else could do. Sometimes in a different way, but I could do it. Now, after years of walking the ‘wrong way’ and over compensating for the parts of my body that didn’t work well, my back constantly hurts, I can’t walk or stand very long, and I fatigue very easily. Basically, my body is aging at a much faster rate than that of my peers. That being said, I won’t suddenly begin to experience intellectual impairment, drooling, or any of the other associated symptoms because of it. It will always just be the impairment of my arm and legs, and bad balance.
Before the pain and fatigue started, I was unaware that it would happen. I always thought I would just limp, have muscles that were too tight, be unable to move my ankle and toes, and have bad balance. When they said the CP would never get worse, I thought that, well, it would never get worse. But years and years of body parts moving in a way that was not intended for them to move has taken its toll, and I’m only 27. Now, in a wheelchair, unable to get a good night’s sleep, and unable to cook a decent meal for my family, I’m honestly not sure what lies ahead. How long until I can’t walk, or even stand, at all? Will I be able to interact with my kids the way I want to while they’re young? How are the medicines I’m taking on a daily basis going to affect my body down the road? Will there ever be a way out of this daily pain? Will hot tubs ever come in prescription form and be completely covered by insurance? (Okay, so that was to lighten the mood, but still, never say never!)
I haven’t been able to find a lot of information on how CP affects a person into adulthood. Everything I can find is about ‘Your child with CP’. I am really hoping that this will change soon. Especially because a child with CP is a future adult with CP. It doesn’t disappear on your 18th birthday, but that seems to be when you’re unable to find help anymore. But I am not called to worry, so I take it day by day. I am granted the grace to get through it. Hopefully to thrive with it, because I do not believe in surviving, I believe in living. Who knows, maybe I will be the guinea pig pioneer that helps millions navigate their way through rockin’ in life with CP.