“Cerebral Palsy doesn’t get worse.” That’s what I was told when I was a kid asking questions. Technically, that it true, but as I have discovered, in some ways, things do get worse.
As I discussed in my first CP Awareness post, Cerebral Palsy, by definition, is brain damage. The complications and associated conditions are the tangible evidence of the brain damage. A person with Cerebral Palsy might have all or only some of these. I, thankfully, have only a few. But I am finding that the older I get, the more ‘complicated’ it gets. According to mayoclinic.com, these are some complications of Cerebral Palsy:
• “Contracture. Contracture is the shortening of muscle tissue due to severe tightening of the muscle (spasticity). Contracture can inhibit bone growth, cause bones to bend, and result in joint deformities, dislocation or partial dislocation.”
This is a complication I have. Despite surgeries to lengthen my muscles, the spasticity in my legs is very noticeable. My hip flexer actually pops out, and my left knee is permanently twisted inward. When I stand, my knee is not in the center, but to the right of my leg. It wasn’t always that way. That is from the tendons being too tight while I grew. Growing pulled at my tendons like resistance bands, forcing my bones to accommodate.
• “Depression. Social isolation and the challenges of coping with disabilities can contribute to depression.”
I don’t think I’ve ever been ‘clinically depressed’, but there have been times that I’ve been worn out, physically and emotionally; as well as feeling isolated. Looking back, I’ve noticed that during those times there was a drop in school or work attendance and performance.
• “Premature aging. People with cerebral palsy often experience medical conditions in middle age that are more commonly associated with older age. Such premature aging can result from significant stress on the body and poorly developed heart, lungs or other organs that may not function at a typical capacity.”
I haven’t reached middle age yet, but my CP is mild, and I don’t have a reason to think any of my organs are ‘poorly developed’. I do have a little concern about the fact that I take medicine on a regular basis, and how it might affect my body in the long run.
• “Post-impairment syndrome. This condition is characterized by pain, fatigue and weakness resulting from stresses on the body, movements to compensate for disabilities and the significant exertion of energy needed for everyday functions.”
I couldn’t have described my everyday physical state any better. As I mentioned, it wasn’t always this way, but it has gotten better since I ‘dropped out of the rat race’. I thank God for that, and I’m also praying that I don’t lose more mobility as time goes by. But I know that if I am not working, it is because God has something better for me. There are countless mothers that wish they could stay home with their kids, and I get to do it. I do not take that for granted. I also know that that is not my only purpose, and I want to help as many people as I can.
• “Osteoarthritis. Pressure on joints or abnormal alignment of joints from muscle spasticity may result in the early development of painful degenerative bone disease (osteoarthritis).
I think I might have this in my hip joints. That is the joint that connects your femur to your pelvic bone. I just read that it’s usually treated by hip replacement, which kinda freaks me out.
Associated conditions are a little different from complications in that they are usually directly from the brain damage (issues from the beginning), where complications come down the road (side effects from the body wearing out, so to speak). Here are some of the associated conditions of CP:
• Impaired vision and/or hearing
• Malnutrition and/or failure to thrive– Difficulty eating and swallowing because of low muscle control can cause malnutrition, growth, and development problems.
Yeah… let’s just say I’ve never had a problem with malnutrition…
Although, my mom told me that when the doctors hooked me up to those wires to help them see how my muscles worked, they told her that I burn two or three times the amount of calories as others doing regular tasks, like walking across the room. This is because it takes twice the effort.
• Mental Impairment
Incontinence – This would be due to lack of muscle control
• Speech and/or drooling problems – Also due to lack of muscle control
• Dyslexia and/or ADD
So my problems from CP are mobility related, and I don’t have any associated conditions. I hope that I don’t lose any more mobility. I’m still trying to find the balance between living life to the fullest now, and ‘saving my mobility’ for later. One of my doctors told me that I should stay seated and use my chair as much as I can now, so that I can put off the loss of mobility. I find that very hard to do. Especially with two kids, but also because I don’t really like using my wheelchair. Don’t get me wrong – I’m grateful for it when I really need it, but I find myself pushing my limits to stay out of it. Everyone tells me I’m too independent, and maybe that’s true…
But while I search for the balance and believe for the best, I hope I teach my kids not to put limitations on themselves or others. That it’s not your circumstance that matters, it’s your attitude. To not be afraid of the ‘what-ifs’.