Cerebral Palsy Isn’t Genuinely Progressive, but It Does Change:


All of my life, I have been told that Cerebral Palsy won’t change. While I will never truly understand what it is like to have a progressive condition, CP does change as you grow older. I wish someone had informed me of this while I was growing up.

A child with CP at the age of five is not the same as a child with CP at the age of nine, or at the age of fourteen, or at the age of twenty. For example, I used to be able to walk short distances with a pair of forearm crutches. However, soon after puberty, this became more and more difficult. It was physically painful for me to be able to do this. I grew frustrated with myself but realized that it might no longer be possible.

Chronic pain, stiffness, and spasticity certainly can cause your joints and muscles to ache more than they should at 21-years-old. At first, I was surprised and thought that I had done something wrong. I began to experience more pain and fatigue once I hit puberty, as well.

Over the years, I have begun to use a power wheelchair more frequently. I put off getting a power wheelchair for as long as I could. I became upset any time someone brought up the possibility of a power wheelchair. I saw needing a wheelchair as defeat.

I have always used a walker to get around, so I never imagined myself needing a wheelchair. Getting a wheelchair was not something that crossed my mind growing up. I had always believed that using a wheelchair would make me less independent. I feared that I would become dependent on the wheelchair. I thought of needing a wheelchair as a sort of personal failure. If only I had done a little more PT, I wouldn’t need a wheelchair, I thought to myself. My medical team also wanted me to keep walking to increase my stamina.

Despite my initial apprehension about getting a power wheelchair, I can now not imagine my life without one. I wish I had gotten a power wheelchair sooner. The wheelchair has opened so many doors for me that would not have been possible otherwise. I am able to enjoy life more, because I don’t have to worry as much about fatigue. I am thankful that I chose to get a power chair when I did.

To claim that CP isn’t progressive isn’t telling the whole story. I wish I’d known from the start. But I’ve always known how resilient my body is, how far from broken it is in its tenacity. As joints stiffen and muscles tighten with time, it endures and adjusts. I adjust as my CP changes. I am always looking for ways to keep up with my ever-changing body.

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