Cerebral Palsy: what you need to know

When people hear that I have cerebral palsy, I (usually) get one of two responses. The first usually goes along the lines of, “wow, you’d never know, you look really well with it!” and the second is,”Cerebral palsy? I’ve heard of it, but I don’t know what it is”. Of course I’m speaking in very general terms, and it is worth mentioning that I am indeed conscious of the varying degree to which people are aware of the condition. However, I thought that it would be worthwhile to discuss the basics of cerebral palsy to further inform subsequent posts.

If we had never met before, and you were to come across me walking down the street, I’d be very impressed if you knew that there was anything ‘wrong’ with me at all. Whilst I hate using the words ‘normal’ (what constitutes normality, anyway?) ‘wrong’, and ‘different’, please bear with me! I’m hoping to make some sense to you all as it’s been a really long day! I physically don’t appear to be any different to the next person. I seem to walk perfectly normally, and appear fit and healthy. However, if you took a closer look, you might notice that I sometimes walk a little awkwardly on my right leg, and that I find my right hand a little awkward to use. So much so, I keep it tucked away in a pocket.

You see, I actually have a form of cerebral palsy called a right-sided hemiplegia. When I was born, I was premature and only weighed 2lb 11ozs. Being of low birth-weight can increase the risk of acquiring cerebral palsy, as does being part of a multiple birth, which I also was; I have a twin brother. Cerebral palsy is, in really basic terms, caused by an injury to the brain prior to, or fairly immediately after birth. I know when I was born my brain hadn’t fully developed on the left hand side, and though it did seem to recover and repair after my birth, it left me with the resulting cerebral palsy which affects (on a very basic level) my motor skills on the right hand side of my body.

When I was three I underwent an operation to ‘lengthen’ and stretch my right Achilles’ tendon. The form of cerebral palsy I have causes my muscles to be spastic, so that they’re always tight no matter when position they’re in. This operation enabled me to walk in the way that I do today, and for that I’m so grateful! I’ve also had lots of physiotherapy appointments, stretching plaster casts on my leg and, more recently, I’ve been using a splint to try to keep the muscles in my leg as stretched as possible. On painful or difficult days, I use a walking stick as I managed to find a rather pretty one. Or at least (I think) as pretty as a walking stick can be!

The main thing to note is that cerebral palsy doesn’t go away. There is no cure for cerebral palsy. And though my brain injury has already occurred, the affected muscles may continue to deteriorate over time through use and stress. My affected muscles can often become really painful because they’re constantly stiff and tight. I also have issues with my balance, with using my right hand, and my mobility, especially on ‘bad days’. There are so many other different symptoms associated with having cerebral palsy, and I’m aware of how long this post is becoming, so I’ll make sure to discuss them in other posts.

I’m sorry if this is rather dry and that this is possibly running the risk of being boring, but I felt like it was imperative for me to at least highlight the basics for you all! I hope you’ve had a wonderful week and I wish you an enjoyable weekend.

All for now,
Heather

And so it begins…

I’ve always been one of those people who have started writing a blog, enjoyed it, then somehow let living my life get in the way of writing it. It’s a similar scenario when it comes to keeping diaries; I say I’ll aim to write a wonderful account in it daily, but then I realise that 1) my life isn’t really hugely exciting, and 2) I find other things to do.

I have tried to fathom out an explanation for my lack of progress many times to no avail, because despite the enjoyment of the blogging itself, I came to the realisation that I’d become disheartened with the whole idea. I never began blogging with the expectation  that I’d draw in plenty of readers from across the globe, (though I did get a fair few followers,) but I just stopped believing that what I was writing was a worthwhile (or even enjoyable) read.

I think the problem was that there was no clear direction for my last blog. It had an incredibly ambiguous and vague direction. If I remember rightly, I labelled the page as a space to talk about my life, which is, in all honesty, nothing more than ordinary. I could probably sum up the generalities (and banalities) of my life in no more than four sentences. I’m no super hero.

What I did find useful and sometimes even therapeutic however, were certain posts I featured on my blog. I live with cerebral palsy, in the form of a mild right-sided, spastic hemiplegia.  I also live with an abnormal increased kyphosis in my thoracic spine, sometimes known as Scheuermann’s disease, which is probably caused by me having cerebral palsy to start off with. These are both life-long conditions. They’re not always easy to deal with. Pain forms a huge part of my everyday life, and coming to terms with my conditions has been an arduous, emotional process. Blogging about my medical conditions helped me to fathom out my feelings towards them, and allowed me to share information with the world that I didn’t usually discuss. It felt good to discuss my feelings surrounding the cerebral palsy, as it’s something people aren’t always aware that I live with, and most importantly for me, those posts provided me with a place where I could be honest with myself. It was hugely cathartic.

In light of this, I decided to start this blog specifically for talking about my disabilities. I hope it will be (at the very least) 1) informative, and 2) as cathartic as previous as attempts.  It would also be fantastic if my silly posts somehow managed to help others in my position, because I know having someone to relate to has made my coming to terms with things a whole lot easier. I’m not going to claim I’ll be updating this daily, because I don’t really know yet, but I will do my best to post whenever I can. It’s a start, and I promise I’ll try.

If you’ve managed to successfully navigate through my (often pointless) ramblings, I applaud you! Before I make this far longer than it has to be, I’ll stop myself right here.

Until next time,

Heather