It’s now come to the end of March and only the beginning of what is a very difficult time for the whole world. It’s crazy how quickly all of this has happened and feels so surreal… This month has also been National Cerebral Palsy Awareness Month. In some ways it doesn’t feel right to be talking about anything other than coronavirus – is it the right time to be trying to raise awareness? But I started this post a few weeks ago now and wanted to finish it. And perhaps people may want to read something non coronavirus-related. I know writing it is certainly a good way to take my mind off things anyway, so I thought I would go ahead and share this.
Although I have mild cerebral palsy (CP) in addition to dyspraxia, I don’t tend to focus on it in my blog as much as I do on dyspraxia. That’s mainly because I feel my dyspraxia affects me more, something which may be surprising to some as they may assume that CP is likely to affect someone more. That’s one of many assumptions that may be made about CP. Although cerebral palsy is something that almost everyone has heard of, there remain a number of misconceptions about it. So I thought that I’d write a blog post on some of the facts about CP which are perhaps lesser known about. I’ll admit, there are a number of these I didn’t realise myself for a while. There is a reason behind that though, which I’ll mention later in this post.
1. Cerebral palsy is an ‘umbrella term’ – there are different types.
Cerebral palsy doesn’t refer to just one disability, under the category of ‘cerebral palsy’ there are different types. These are: spastic cerebral palsy, athetoid/dyskinetic cerebral palsy and ataxic cerebral palsy (which is the type I have). Spastic cerebral palsy is the most common type. Under the category of ‘spastic cerebral palsy’ there are further subcategories, depending on the number of limbs which are affected. These categories are: monoplegic, diplegic, tetraplegic and quadraplegic. Some people may have more than one type of CP, known as mixed cerebral palsy.
2. CP is caused by damage to the brain, not damage to a person’s limbs.
Although it is said that the different types of cerebral palsy affect a certain number of limbs, it isn’t actually the limbs themselves which are affected. CP is caused by damage to a person’s brain (which is why a number of individuals with cerebral palsy experienced complications at birth) which then affects the way the signals are sent to muscles in the limbs. As Sophia Warner explained in this article, if you gave my arms and legs to someone else they would work fine!
“I always say that I have brain damage, and that my arm and legs are fine – it’s just the connection. I explain that if I stuck my limbs onto their bodies, then they would work. I explain that it’s just like a stroke but at a young age. People seem to understand this.”
Sophia Warner – Life with cerebral palsy: a Paralympian’s perspective
3. Not everyone who has CP uses a wheelchair or has an obvious disability.
There have been times before where I’ve told someone that I have CP and they seem surprised. It seems that when you say the words ‘cerebral palsy’ there is this automatic assumption that the person must be severely disabled and use a wheelchair. What people don’t realise is that there is such a wide spectrum of severity of cerebral palsy. Whilst some people may be severely affected and unable to walk, sit up, or talk, that’s not the case for everyone who has CP. For some people, as is the case for me, cerebral palsy isn’t an obvious visible disability.
4. Fatigue is common for those of us who have CP.
As a result of the difficulties CP causes with balance, coordination and muscle movements we use up extra energy when carrying out movements. This means that fatigue is a common difficulty, albeit a hidden one. For me, personally, this is one of the most frustrating aspects too. Sometimes it feels like there is no reason at all for me to be tired but then I need to remind myself that my body is using up more energy than everyone else’s.
5. Many people with CP have an increased startle reflex.
The startle reflex is a reflex that all people have from birth but which normally disappears by the age of six months. However, in CP this reflex can remain. This means that we can appear ‘jumpy’ at certain triggers, including loud noises, in a more pronounced way than others would and at what may seem like ‘smaller’ things. Chloe explained this well in her series of tweets she did a while back about the hidden aspects of CP, I’d definitely recommend having a read of the rest of them!
6. CP can affect our thought processing.
Whilst many people know that CP affects a person physically, what they may not realise is that it can affect our thought processing too and can mean that we are slower to process information. It doesn’t mean that we can’t process information, it just means that it takes us a bit longer than everyone else.
7. Not everyone with CP was diagnosed at an early age.
Not everyone who has CP was diagnosed at a young age. Although it is likely that the majority are, some people aren’t diagnosed until they are older. I, for example, didn’t find out I had CP until I was 13, despite being diagnosed with dyspraxia at a young age. It was then when I began to find more out about CP and how it affects me. Many of these facts I’m writing about now are things I wouldn’t have known before the age of 13, despite having CP myself!
8. CP isn’t progressive but it can vary from day to day.
CP itself is not a progressive condition but some people experience increased difficulties with mobility as they get older as a secondary effect of having a disability which affects their muscle movements. In addition, the effects of CP can vary from day to day – as was a common phrase amongst some friends with CP, some days are just ‘CP days’! These days it will feel like your CP is affecting you more, perhaps you trip over things more or have tighter muscles. It’s often little things – for example, some days I’ll randomly notice I’m more shaky when picking a drink up, some days my legs/feet hurt more quickly than usual and other days I’ll feel really tired and low on energy.
As I mentioned at the beginning of this post, it’s not often I blog about CP. In some ways it can be harder to blog about in relation to my personal experiences, as it can be difficult to tell what is due to dyspraxia and what is due to CP. Even quite a few of the things I’ve talked about in this post are things which overlap with dyspraxia anyway (if you’re wondering what the similarities and differences are between dyspraxia and CP, this is a topic I blogged about a few years ago). I have enjoyed writing this post though and hope that awareness continues to improve! Not so much awareness of the words ‘cerebral palsy’ but awareness of what it means for different people and of those aspects which are not so well understood. Remember how much more there is to a person’s disability than what you may initially think when you hear the words ‘cerebral palsy’!
Stay home and stay safe everyone!