Since I setup CP Teens UK in 2013, I have met hundreds of people with Cerebral Palsy. I have also met lots of people with ABI's (Acquired Brain Injuries) through illness or accidents, which have basically left them with what is Cerebral Palsy.
This got me thinking. As it did my Mum who came up with a 'lightbulb moment' the other day after 22 years of saying "Ellie has Cerebral Palsy". As you're probably aware, Cerebral Palsy isn't an 'off the shelf/one size fits all' condition - Cerebral Palsy is actually an umbrella term that indicates that a certain part of the brain is damaged. Also, the term 'Cerebral Palsy' is only used when the damage to the brain happens in infancy - I can't be bothered to goggle what the 'cut off' age is to 'allow' you to go about your life with the CP badge (haha, imagine actually walking around with a badge!) but I think it's from being conceived to about 4-years of age - but don't hold me to that!
So, take my friend Matt - he had an accident when he was 10-years-old leaving him with a brain injury that presents itself as Cerebral Palsy. However, because he was 10-years-old (i.e. past the age when you can be given the good old CP badge!), on paper he has Quadriplegic Dystonia.
Matt & I - World Games 2015. Ignore my bad hair day - it had poured all day long!
My Cerebral Palsy was caused as a result of medical negligence during and after birth - basically I got stuck when I really didn't need to, it absolutely could have been avoided which since has been proven. I have got jokes about getting stuck, but 'll leave them there, haha! Also, you know the old joke "I'm sure somebody dropped me on my head when I was born"? I always follow this with "...wait, they did! Ah, everything makes sense now!", haha!
I was healthy up until my birth, i.e. I had no brain abnormalities, damage etc. So, I acquired a brain injury during/slightly after birth - in affect, I have an ABI. This dawned on my Mum the other day and she realised that actually in my situation, the term 'Cerebral Palsy' has maybe just been applied to me as a convenient 'cover up' in addition to the fact I was in the age bracket to be 'awarded' the title of 'Cerebral Palsy'. I mean, the hospital were hardly going to go "I'm really sorry Mr & Mrs Simpson, Ellie has acquired a brain injury" were they? My Mum and Dad's first question was always going to be, "Well, how?". So, using the term 'Cerebral Palsy', they probably thought it'd send my Mum and Dad off the scent. Unluckily for the hospital, my Mum and Dad researched what Cerebral Palsy actually was and were onto them like a dog on a bone!
Yes, I have got Cerebral Palsy - my cerebellum is most definitely palsied, or pickled, hahaha. But, equally, it is an ABI. Looking at it from the other direction, Matt has an ABI. But, equally, he has Cerebral Palsy - his cerebellum is pickled in the way that mine is, haha!
I saw a very interesting question on social media the other day in relation to Cerebral Palsy on social media. It asked:
If I told you I have had a stroke, would you see me differently? Would you understand more?
Basically, the message was, why do people understand physical disability following a stroke a lot more than physical disability that is described under the title of Cerebral Palsy? They are essentially the same thing. People who have strokes tend to be older, so they never get given the 'CP badge'. But babies and infants have strokes too - I have a few friends who have had strokes. I also know someone who had a stroke prior to being born. At this age, it is automatically called Cerebral Palsy.
Is it time to start educating people from a totally different angle about Cerebral Palsy? Has the term 'Cerebral Palsy' somewhat 'blinded' people? Are people so focussed on seeing it as a condition that they can't see what it actually is or what it actually means? All the time, people just assume that I'm intellectually impaired (although, sometimes I do wonder myself, haha!) because I have 'Cerebral Palsy' - if I told people I had a stroke/a brain injury that resulted in physical disability, would this iron out these assumptions as it is an easier concept to understand? I don't know, but it'd definitely be interesting to see.
Maybe we should conduct a CP Teens social experiment!
Anyway! Catherine Stott has kindly done a guest blog. You can read her own blog here: www.roadtorecovery557.wordpress.com
My name is Catherine and I’m 17 years old, and let’s just say that my summer has been a
bit…different to last year so far. Rather than sunning myself on the beaches of Greece and listening to my favourite bands at Latitude festival, I’m currently recovering from a bilateral femural derotational osteotomy. Also known as major surgery.
Early on this year, after a lot of deliberation, I decided to have my hips broken, rotated and patched back together again with a couple of metal plates (stupid I know). This surgery has basically adjusted my gait and means that (hopefully!) in the long term, my walking will become more ‘efficient’ i.e. I won’t use as much energy when I’m walking
–I’m sure some of you know how tiring walking can get with CP!
I’m just four weeks into my recovery and, considering what’s been done, all is going pretty well.
Obviously, it’s not exactly been easy, to start with my epidural just decided to casually come out a day early while I was in hospital, and the random muscle spasms haven't exactly been laugh a minute either. But on the bright side, I'm home, the spasms have stopped and I'm up and walking - even if I do look like an OAP in the process (it was pretty degrading to see the 16-month old in the ward walking faster than me, can't lie).
Spending most of my time in my wheelchair has taken some getting used to as before the surgery I was pretty active training up to 5 times a week as a paratriathlete. Paratriathlon involves a 750m swim, 20k handbike ride, and a 5k wheelchair push. So yeah, it’s heavy on the arms. Alongside this I also did wheelchair racing, mainly on the track but also
on the road. Though considering I’m a wheelchair racer, my day chair skills are pretty shocking I’ve found out! Although my CP mainly affects my legs, I did walk around most places before the surgery.
I’m a while off yet from getting back into it all but for now I’m just sticking with the weights and of course, lots of lovely physio! I don’t plan on spending my whole summer locked up indoors fortunately and I’m looking forward to going to a local music festival, Cotton Clouds, later on in August.
I’m planning on keeping a log of my recovery, just so I can keep track of my progress but hopefully it might come in handy to anyone considering similar surgery!
Thanks for reading my first blog, hopefully it wasn’t too boring!