Hide & Seek

Despite having Cerebral Palsy for 30+ years I’m still learning about it, it’s effects on me, and how it affects others.

 

I could go in-depth as to why I think that’s the case but that’s probably a topic for another day (before I put my foot in my mouth) but the short version is that there’s little research on people with CP over the age of 18.

Cerebral Palsy effects how the brain communicates with muscles so there’s a misconception that it’s a muscular disorder.

It’s easy to do when the majority of Cerebral Palsy related surgeries deal with bones and muscles.

But a lot of the largely unknown aspects of living with CP have to do with the nervous system.

There’s a startle reflex.

Chronic Pain.

Temporary, yet extreme pain, like a kidney stone.

Side effects from medications.

Trying to do two things at once that requires different areas of your brain, like getting dressed and holding a conversation.

If it has the potential to cause any neurological issues for a person with a normal nervous system there’s a pretty good chance that it’s going to cause issues for someone with CP.

 

Things That Go Jump In The Night

I’ve written before about this lovely thing that some people with Cerebral Palsy struggle with called a startle reflex (or technically called a moro reflex). While I can’t provide any tried and true tips or tricks for keeping startling at bay I can tell you what makes mine go nuts.

You know those food service pager things that light up and buzz when your table is available or your food is ready to be picked up?

They may look something like this:

restaurant-pagers-sydney

If I’m out with someone else I’ll insist that they put it in their lap, on top of a jacket, or on the seat next to them.

Because those little buggers put my nervous system into overdrive, and it can take days, yes days, to recover from it.

If I’m out by myself, I usually put it next to me on the chair I’m sitting in or under my leg. It sounds counterintuitive to put it under my leg but this is one of those instances when having diminished sensation really does help. They vibrate hard enough that I can feel it (unlike a cell phone) but it’s not jumping around on a table, which then makes me all jumpy.

I also try and avoid establishments that use those types of pagers but it’s a trickier thing to do than one would think.

People, friends and family included, will often make fun of me for my little quirks and things I obsess over but few people understand that it’s the “little” things in life that make living with Cerebral Palsy more difficult, and sometimes just flat out miserable, not the “bigger” things.

The ADA takes care of a lot of the “bigger” things and what it doesn’t we’ve usually learned to compensate. It’s the “little” things that catch you by surprise.

So next time you’re with someone with CP and they ask you to do them a favor please do it (without the wisecracks, comments, or questions). You’ll make the day more pleasant for them, and probably yourself too.

Why Are You So Jumpy?

I always think writing 5 posts a week roughly related to the same topic is going to be easy but it never turns out that way. For one thing it’s hard to come up with new topics year after year then when you add in a growing career and course work, well let’s just say re-launching my blogging platform at the beginning of the year turned out to be one of the biggest blessings ever at a time like this.

I didn’t want to publish all previously published material this year but I do have the opportunity to do it as often as called for so when I saw the following tweet from Ellie at CP Teens UK I decided it would be a good time to re-publish one of my most popular posts from last year.

Most people with CP have experience with startle reflex to some degree.

It’s also called moro reflex, or so I’ve heard anyway.

I happen to be one of them. It’s one of the most obnoxious aspects of having CP, in my opinion. I’m not nearly as high strung as people think I am (thanks to that startle reflex).

I’m not an expert in the startle reflex; in fact until recently I thought it was just some kind of weird thing I just had to deal with.

Obvious things can set off a startle reflex, loud noises etc., but not so obvious things can “startle” you as well, like the tone of someone’s voice. There are people that I like being around but I hate when they start talking because I know it’s going to make me jumpy.

And all those lovely notification noises smart phones make? Its bad news bears for my nervous system, plus it’s annoying (it is a small comfort to know that “typical” people, like pilots on airplanes, are annoyed by that as well).

I wish I could tell you I have proven remedies to calm down or stop a startle reflex but I don’t.

There were a few years where placing my feet behind the front legs of a chair helped but not anymore.  If I tried to do that now I’d probably flip myself out of the chair. I also can’t sit in the same position for as long as I use to without getting uncomfortable.

The unexpected plus side of not being able to sit still for long is that I have to shift my weight frequently. This tends to hide some of the jumpiness from people, but not always. Those few “well trained” friends and family can always tell, but they don’t bother bringing it up every single time.

My startle reflex never really goes away but there are plenty of things that I know will make it worse.

I think that’s what bothers me the most, knowing what will make it worse but not being able to do anything about it.

Pain also makes my startle reflex worse; another reason why passing a kidney stone isn’t fun (for example). In fact if the pain level gets high enough the heightened startle reflex lingers after the pain goes away.

And PMS isn’t just PMS either, there’s what I’ve come to call “pre-PMS”, THEN PMS.

The fun never ends.

I know you’re probably thinking why is she even talking about this if she’s got no insights?

Because sometimes I need to hop down from my self-appointed soapbox and “just” say that I can relate to what some of you are dealing with and that I don’t have all the answers.

*A similar version of this post was published previously on March 12, 2014