THE C WORD…

I hate the term Cerebral Palsy. It makes me sound brain dead. The Medical term for my condition is ‘Spastic Diepleagia Cerebral Palsy.  I just ooze sexiness, don’t I?

 In lay mans terms, it means that my condition effects two of my four limbs most severely in everyday terms this means I can’t walk and I am unable to do fiddly jobs, buttons, shoelaces and the frequent wrap rage are regular hurdles.

 Maybe it was watching me struggle a bit made people in the medical profession want to ‘help’ me, as a kid they were all obsessed with the fact that they thought the could fix my mobility problems, or at least ease them.

 Appointment after appointment Doctors would poke, prod, and ponder followed by a length discussions about my options to elevate my difficulties.

At a young age I used a walking frame occasionally. I fondly remember walking down empty isles in the supermarket under my own leg powered steam, but it was a very painful exhausting process. Snails went faster than me.  I’d had everything suggested at some point or another, botox injections to relive my tight muscles, different wheelchairs or walking aids  to help my posture, operations etc. Sadly they never suggested swimming with Dolphins as a cure, something that one of my classmates whole hardheartedly believed would work, only to realize after saving up and having the experience didn’t make you walk miraculously.

That said we did try the odd treatment, I had both legs in plaster cast with my feet set at the correct angle, the idea of this being that I would have more of a natural gate when the casts came of six weeks later. In theory the tendons being manipulated in such a way would almost create muscle memory.

Usually this treatment takes one casting, in my case it took about five. It was uncomfortable, distressing and painful and that was without the logistical problems of showering dressing and mobility that comes when you have the unfortunate experience of being in a cast.

The multipule casts I had were either holding my foot incorrectly, too painful to bare, too loose, too tight, or as in one case fell off my leg during the night resulting in me finding it in the morning and taking it in, under my arm the next day. 

Despite these failed attempts, one was successful and to be honest the results were good, for a moth or so my walking on a frame was more relaxed and felt easier and less laborious at least, but this didn’t last and a few weeks later my legs stiffened and we were back to square one.

We decided not to repeat this again, after the numerous failed attempts the pay off was so little to me it wasn’t worth the discomfort. 

So the mention of surgery was constant, and to a young girl, this was frightnening, not because of the thought of an operation was disturbing, but because Doctors made me feel like I wasn’t ‘normal’,  like I was broken and needed to be fixed. I was a very happy child, at that age my disability was a confusing, I didn’t understand why I couldn’t walk. so having someone who was a Doctor talking about operations, made me ask questions like ‘What’s wrong me?’  I felt fine. ‘Was I poorly? ‘.

I’m happy to say that Mum and Dad resisted the pressure to agree to medical intervention, they always said that I should be the one to make a decision about what happens to my body. They didn’t want to fix me, but agreed that they’d try and make my life a little bit easier in the long run. It was quite a brave decision in my eyes, after all when they were given these options, I was still a child and nobody could tell them how my condition would effect me as an Adult. They have never wanted to cause me unnecessary pain.

There is current talk about a select number of NHS hospitals now offering, what the media are calling a cure. After looking into this, i realized that it is the same ‘cure’ that I was offered all those years ago.

I realize that this procedure may work for some, but as this is my blog. I’d like to offer my thoughts that exist through experience, I am no doctor but this is how I see it.

From my understanding, this procedure is known as the ribbon technique were the tendons are severed and the legs are then stretchered to give patients a more natural gate and improvement to mobility. I could go into more detail, I won’t though because even now the thought of this is horrific and makes me feel funny.

There was, in my case at least no proof that this would be successful is painful, (can you see a theme here) and requires years and years of daily physio.  

I know first hand that this Operation doesn’t work, many of my classmates opted for this, and I can tell you that not one of these patients have now got a better gate or are running marathons. There’s no denying that this helps in the short term, most my friends came back to School walking taller, and with a better stride. 

But then puberty and growth spurts came along and the severed tendons couldn’t cope, the muscle gives way and your legs are an even worse state than before you started, I know people who had far more mobility than me and no have less than I.

The bottom line is this, Cerebral Palsy is a neurological condition. You will never ever cure a neurological condition with surgery to a limb. 

I am extremely lucky to be surrounded by a family who love me unconditionally and I am so blessed to have a family unit that believes I don’t need to be fixed. There are families though, that refuse to except that their disabled child is disabled, that this disability is a curable aliment, that surgery will fix it and then society will except their child.

The media are wrong to use the word ‘cure’ when talking about this, it’s very dangerous and can give those who are struggling mentally with disability, that all there issues will be solved with a knife. I’m sorry to tell you,  It won’t.

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