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Why Calling Cerebral Palsy 'Non-Progressive' Doesn't Tell the Whole Story

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Growing up, my parents and I always seemed to leave the doctor’s office with the same prognosis. “Lucy’s doing well, keep up the physical therapy, I’ll see you back in a few months!” As someone with “mild” (some doctors have even said “very mild”) spastic hemiplegia, cerebral palsy predominantly affects my left lower body. As a child, I did it all: physical therapy, bracing and night splints, Botox, serial casting, and wore a Functional Electrical Stimulation machine multiple times per week. All these treatments, along with a mom and dad who were incredibly dedicated to my needs, kept me feeling well enough to avoid any kind of orthopedic surgery until the age of 19.

I know by definition, cerebral palsy is a non-progressive disorder. The degree of brain damage is unique to each individual. Once injury to the brain occurs, its neurological effects are permanent and unchanging. But as I’ve grown older, particularly in the first few years of my 20s, I’ve noticed my body with cerebral palsy is more sensitive, and my pain level has increased.

As a child, I don’t remember being in much pain. Sure, there was some screaming involved when my physical therapist had my leg on her shoulder, but otherwise, my life was pretty uneventful in regards to physical discomfort. But as an adult, I’m constantly aware of the state of my muscles. My left leg is like my baby bear, and I’m very attentive to and protective over how it feels. Standing or sitting for long periods of time, the weather, or trekking across uneven terrain are just a few of the things that can send my muscles into a state of spasm and exhaustion. As someone who has lived with CP for 22 years now, I would definitely say my condition, symptomatically speaking, has progressed. And I would be lying if I said that now having to accept a certain degree of unpredictable, chronic pain hasn’t blindsided me a bit.

As I think back to my life five, 10, and even 15 years ago, no doctor ever really told us I would eventually be living in a body affected by the years of wear and tear spasticity has caused. The conversations back then were focused on the short term; keeping up physical therapy and getting me through my growth spurt. Everything was: “Oh we’ll cross that bridge when we come to it!”

Well, I think I’ve reached that bridge.

I’m an optimist, sure, but I’m also a realist. Living with cerebral palsy at the age of 22 is very different from living with cerebral palsy at the ages of 6, 12, and 16. Nothing was ever said about how by the time I’d reach my college years, there’d be days when taking a few steps would leave me feeling as if I’d just climbed a mountain, or that there would be days spent feeling like my left leg had been put through a taffy puller because no matter how much I stretched, my muscles still wouldn’t relax!


No doctor ever prepared me for the psychological toll having CP can take, either.

Ask any young adult with cerebral palsy, or any type of pain for that matter: finding the balance between pushing through and accepting your body and its limitations can be difficult. It requires a change in perspective and a heck of a lot of patience. There are some days when it takes every ounce of my emotional energy to prevent my brain from spiraling into the anxiety and the “what-ifs” of what my body could feel like as it ages for the next five, 10, 20, and even 30 years.

And there are some days when it takes all of my emotional energy, period.

I can remember one day in particular, a few months back, when I just couldn’t take it anymore. My muscles were throbbing due to my last round of injections wearing off. It was as if someone was taking a hammer and slamming it repeatedly into my leg. The pain was so bad I didn’t want to move. I curled up on my bed and broke down crying. I was angry, exhausted and so frustrated, thinking to myself, “Why did no one ever tell me I would have days like this?”

I couldn’t get the thought out of my head that if my body felt this tight and spastic in my early 20s, what could I possibly expect in the future? I’m still the same Lucy I was as a kid… I’m determined, I’m a go-getter and someone who jumps into what she loves with all her heart. I want to be able to travel the world, chase my kids around, and live out dreams I haven’t even dreamed up yet. But will my body be able to keep up?

I have CP. It’s non-progressive. Right?

I realized getting stuck on the expectation that over time my body won’t change physically is unrealistic, and is only going to disappoint me. It’s time we start changing the perspective that how CP presents itself in an individual will stay the same over the course of life. Yes, I know what the textbooks say. I know what the technicalities of a permanent, unchanging brain injury imply. But the effects that spasticity has had on my body have led me to believe differently.

I grew out of my leg brace and little round glasses. I grew out of my pediatric specialized care. But I will never grow out of CP. It’ll continue to grow with me forever. And with each spasm, the reality of my aging muscles becomes more apparent every day.

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Thinkstock photo by Lzf.

Originally published: May 28, 2017
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