Friday 9 November 2012

Hemiplegia : The Unseen Effects.

Hello, 

Today I want to do a post discussing the unseen effects of the condition I was born with, left hemiplegia. Visibly, the physical symptoms of this condition are very obvious. The limp, the fact my left leg is shorter than my right, my left calf muscles are clearly smaller than my right. The foot drop I have. The swan neck deformities in my fingers, my bent elbow. However, my hemiplegia has a lot of non-physical symptoms, which another person can't see. Yet to me, these can be quite disabling, frustrating and difficult to live with. It was only after my own research, and talking to others that the link between them and hemiplegia became clear: so here goes:

Visual Perception Difficulties.

This one manifests itself in various ways. At school, whilst sitting for my GCSE's it became apparent that certain bits of maths were impossible for me. No matter how many times it was explained to me I couldn't do algebra, sequences, rotational symmetry. The way to describe it is that my brain can't process how to get from a to b, in solving these maths problems. It's like I just see the equations on the page and that's it. I didn't realise at the time, my hemiplegia was at the root of this. It was so incredibly frustrating, maths used to give me a big dose of anxiety. I was brilliant at the other stuff, I know my times tables off by heart etc. However, all was not lost, I managed to get a C at GCSE because I was stronger at the other stuff, thankfully. Researching hemiplegia as an adult I found out many people with it struggle with certain elements of maths. It was a relief, because it closed the door on a lot of frustration I'd felt for not being able to do something. 

My visual perception issues also have direct consequences for daily life too. I can't follow directions, or read maps. At all. My brain can't figure out how to translate the information on page to the real life setting. It means I can't go new places on my own because I would get lost and not be able to ask for help, since I would not understand what the directions were. 

Concentration and Attention Span.

I have a poor ability to concentrate on tasks and often find that my attention wonders. I have since learnt this is related to hemiplegia. Unsurprisingly, I found that it was most challenging whilst studying at university. In lectures I would find it hard to focus and having to concentrate on trying to make myself focus was exhausting. Also, sitting still for longer than ten minutes is very uncomfortable so I would constantly fidget and shift position during lectures to try and get comfy. It was very distracting. Strangely, I found doodling on paper would help me concentrate longer, maybe because it makes my brain focus on something. My short attention span would make writing essays hard and time consuming. However, I have found that setting myself small word targets seems to help focus my attention. 


Memory

I have an awesome long term memory. I can remember everyone's birthdays and important life dates. However, my short term memory is poor. I have read this has been implicated in left hemiplegia. I have to take someone else to important appointments as an extra pair of ears because I will forget information pretty much as soon I leave the room. 

Anxiety and Depression. 

If you're a regular reader of my blog, or follow me on twitter, you'll know I have both anxiety and depression. Anxiety has been ever present in my life for as long as I can remember. I always think worst case scenario, blow everything out of proportion and dwell on seemingly small things. I am also overly emotional, prone to extreme emotions.  Having spoke to other hemiplegics it seems anxiety is a common occurrence. Sometimes my anxiety is so bad that it very debilitating, and other times it is manageable. I'm learning the triggers of my anxiety and I'm actively trying to manage my stress better. I've accepted that anxiety is part of me, and that definitely helps. 

I also have depression, for which I'm receiving treatment, which thankfully is working. As this is a fairly new diagnosis, it's impossible to say if this will be a long term thing, or how it will affect my future. I find that it is best to be cognitively aware and to not bottle up my frustrations. Depression has also taught me to be nicer to myself, and ultimately to be more positive. I have been told by a psychiatrist that my hemiplegia makes me a high risk for these disorders. I have also read research suggesting a strong link between hemiplegia and subsequent mood disorders. If you have hemiplegia and mood disorders, please be reassured that you are not alone, and that you can be helped. 

I should also note that as a child with hemiplegia my behaviour was definitely affected. I was good as gold at primary school, but at home I had frequent temper tantrums. This persisted through primary school until I went to secondary. In hindsight, I believe this was linked to the fact I was frequently frustrated at primary as my hemiplegia was overlooked by teachers. (I was only under SEN and in receipt of a statement at secondary). I didn't feel confident asking for help when I clearly needed it and I'd take these frustrations home with me. I also think as a young child it's difficult to understand and accept cerebral palsy and why you're different to everyone else.  I was also bullied at primary school so it kind of makes sense now as to why I had bad behaviour. 

These are the unseen issues that affect me, it should be noted that there are a wealth of other unseen symptoms that may affect other people with hemiplegia. Luckily, Hemihelp has a vast array of information and fact sheets available discussing these additional problems. 

I feel that this blog post is important in highlighting the invisible effects of hemiplegia. It seems commonplace that the physical effects of hemiplegia take priority in treatment plans; the unseen effects are all to often overlooked or treated as an afterthought. I would like to see this trend change because these unseen effects can be difficult to manage without proper diagnosis and strategies to manage them more effectively. Indeed, I frequently see parents with hemiplegic kids, or adults with hemi talking about their unseen symptoms asking if they are linked with hemiplegia. Surely this indicates that there needs to be a shift in the way hemiplegia is viewed and talked about. Attitudes need to change so that the non physical effects are treated with just as much importance as the physical effects. 

Any questions, feel free to comment! 

Thanks for reading!