Wednesday, October 1, 2014

World Cerebral Palsy Day 2014 (warning long)

(photo credit -

Last year, I wrote something for World Cerebral Palsy Day. In October 2013 I posted a chart of some statistics about CP, along with where I fall in the various categories. I found out about the yearly event two years ago.

This year, I struggled to figure out what to post. Until today actually. I don't think I've really written about this topic in depth. Aging and cerebral palsy. I've mentioned that my aches and pains have gotten more frequent in the last several years, but haven't really related it to my cerebral palsy, just with my aging.

Why am I bringing this up today? Because I hurt. A lot. Plain and simple. Why do I hurt? Because on Sunday, I stumbled and had to catch myself from falling. I was going into the laundry room and lost my balance. I caught myself by grabbing the door frame. My upper back and arms tightened up like usual when I catch myself. No big deal.

Monday comes along and my upper back is a little sore, and it hurts ever so slightly to turn my head. I thought all day "What did I do?", and couldn't think of anything. Until that night, when it happened again only not as severe. A light bulb turned on. "That's what I did!"

Then comes Tuesday. My husband and I took a walk in the early morning with our niece. We brought the two dogs with us. Jax (our dog) was wearing a prong collar because he's just a tad hyper (sarcasm). Every time Jax yelped (he got too far ahead and pronged himself), I would jump and have to fight not to fall. In doing so, I would cling to my husband's arm (in the past when walking with my older sister I would hold on to her upper arm, and when I did this she called my hand the claw because I would cling so hard).

I jumped and fought about four or five times. Didn't fall once, but it was annoying. I thought maybe the "jerk move" was back, but it didn't quite feel the same. I thought about it Sunday as well, and if it was the jerk move, it was only a slight case of it.

Wednesday morning comes along, and I could barely sit up in bed. My upper back screamed every time I tried to sit up. I finally managed, but it took a while. I wondered "What did I do?". My husband enlightened me by saying "You went for a walk.". Well, just going for a ten minute walk wouldn't put me in major pain like this. Then it dawned on me. All the fighting to stay upright that I did. Yup, mystery solved.

As a kid when I fought not to fall, I don't remember any after effects. Heck, sometimes I didn't bother to fight and just fell. Sometimes it was easier to fall and get it over with. Now I fight like the dickens not to fall. When I did fight as a kid, I never hurt like this. My age is catching up to me.

In a little less than two months I'll be officially "over the hill" (is that what they still call 40?). Everybody is different. Some people turn 40 and have no aches and pains at all, others have a whole bunch of aches and pains. Is it genetics? Is it how active a person is or is not? It is a disability? What is it exactly that have certain people hurt more than others as they age?

For me, I think it's a combination of my cerebral palsy and the fact that from age 19 to 30 I basically wasn't physically active. If I had stayed active during that time, would I hurt this much? My CP affects my left leg and right arm. Basically from both my hips down and also my neck are my painful areas. How I hold my body puts strain on muscles and tendons that a "normal" person doesn't experience. In order to not fall, I lean over so I can grab something, or I'll place my legs in an unnatural (yet more stable) position to have better balance.

In doing so, the tendons, ligaments, and muscles shift and strain aggressively. Over time, this makes it painful to do certain things. I did some pretty decent damage to my knees during the years I wasn't active. I went to physical therapy for my knee pain in 2000 and was prescribed exercises to improve the muscles. I still do those exercises to this day, and I rarely have knee pain any more. It's actually my left hip that I worry about now.

In 2008, I got off my butt, lost 35 pounds and am more active than I was. I still am not as active as I should be. I exercise for an hour maybe, five days a week. But I still sit the rest of the time. I need to get up and move more. Not just during my workouts. I need to get up and move every hour at least. I need to make that a daily habit, to get up every hour for 5 minutes at least. March in place for five, jump on the elliptical for five. Something.

I don't know if implementing that strategy will help with my pain or not. Please don't think that I'm in pain all the time. I'm not. But lately, when I am in pain, it hurts way worse than it used to. Right now, if I move and the pain hits, I have to hold my breath until it passes.

Not sure where I've going with this. Just sharing my experience with cerebral palsy and aging. To put it bluntly, it sucks. I've been sitting here in my computer chair (probably the most comfortable place for me to sit), and I know once I start to get up it is going to hurt like a you know what. So here goes nothing!

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