Friday, 9 November 2012

Hemiplegia : The Unseen Effects.


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. 


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! 


  1. Sometimes I think that invisible effects are worse than the physical ones, because with the physical ones are easier to deal with and to work around.

    The poor concentration is very annoying. If I break my concentration for even a second in my lectures then I may as well have just walked out because I can never work out whereabouts I am or what I've missed and I find it hard to regain it once it's lost. I think getting tired faster makes it worse too? I also have very slow reaction times and I can't really do more than one task at a time without getting mixed up and confused (this is why I haven't been able to learn to drive; I can't think about what people are doing around me and react quick enough if something happens, I also can't judge distances very well so when I go pull up traffic lights for instance I either end up really far past them or really far behind them).

    I think my anxiety has improved a great deal as I've gotten older (although it is by no means easy to deal with). I've never actually been treated though.

    I've always found that doctors never really listen to me when I try to explain that I think that some of my issues are linked to my CP, have you found the same?

  2. Amy, once again another wonderful post. The invisible effects are very real and hard to deal with, in no small part because others simply don't understand - at least not readily. My son struggles with the unseen challenges more than the physical - your posts help me to help him. Along with Hemihelp. Thank you.

  3. Hey peeps. I'm a hemi sufferer aswell and i completely agree with what you say in your post. Amy did you find that people tend to dismiss your non-physical issues more so than your physical?

    I tend to get this and because I lived without really ever declaring them people tend to think of it as me giving excuses.

    I'm currently trying to do an MSc in Computer Science and whilst the uni are starting to understand my predicament they still won't let me do exams in different conditions. That said, how are you and Claire dealing with the concentration issues? Does it affect your grades?

    I have been doing well but I sometimes literally can't keep up with all the information I'm supposed to soak in. It does seem that I shot myself in the foot doing Computer Science. Annoyingly I wanted to switch to 3D animation and modelling due to struggling with some mathematical elements due to my hemi effects but they waved off my request with "You'll be fine", which is proving to not be the case.....

    Do you also find it hard to tell people about your conditions? Generally I hold back some things or find it really hard to tell people the whole picture as I think they would see me as pretty messed up :(. I think it comes down to having it seem the norm everyday you kind of forgot that its seen as different or a disability.

    One thing that i've learnt though is that the doctors aren't always right... I'm 6ft 2 and a bit more than a year ago i used to weigh under 70 kg with my left side being VERY thin. I was told that because of my hemi my muscles wouldn't grow due to lack of connections and nerve damage. Well here I am a year later, weighing 90kg and alot more muscley and in proportion. The consultant was incredibly impressed and happy for me.

    So yeh i guess we have to work alot harder at things than most but really do not listen to the moaners or ppl who say "You can't do this, you can't do that.

    Try it, hobbies, sports etc etc and you'll see you can do it, it might just take you a bit longer than others or you might not be 'as' good but who cares... I guarantee you'll feel great with what you've accomplished.

    1. Btw i'm not saying that we are messed up in my post.

      In a way i've grown into my hemi and its helped shape me as a person.

      I'm just saying that it's sometimes hard to tell ppl about all of your symptoms and for them actually believe what your saying due to it being invisble...

      Anyway..great to find this blog again (I didn't bookmark it before :S) and nice to speak to some others with the same condition :D\\

  4. My baby shows signs of being hemiplegic , I haven't yet took her for a mri but her right arm seems weaker and her leg she would kick and bends inwards , he right eye also seems smaller ,I've waited so long and been through invtro to have her ,I so sacred because her future is unknown to me , what's it like growing up as a child , how do family and community and school life , how did ou get along with other siblings and does slint fix leg by what age are able to walk? Thanx I appreciate responses

    1. Hi, sorry for the very late response. If your child does indeed have hemiplegia, it will be hard for them initially but they will learn to cope with it and eventually just see it as the norm.

      Your child will be just fine but they will just find some things a bit harder.I started walking a few months after the average child and used to shuffle round on my knees instead. The splints help alot as it stopped my foot from turning more acutely inwards. It still does a bit but it insured it was much less than without.

      What i can say is that your child may experience development milestone delays. As in, It may take them longer to learn certain things than average. It took me a long time to learn to cycle but I stuck with it and now i'm able. It took me a longer time to learn to read as I have a short attention span but that was solved by trying to read things that greatly held my interest thus forcing me to do so.

      Primary School was fine, secondary harder. I went to both without any additional support and I just kind of got used to being bad at sports etc. I say secondary was harder as I felt being bad at tying my shoelaces, tie and sport hit home a little more. Got picked on a bit for being shy plus the above but I didn't really care.

      Family, community etc were fine. My parents took me to the hospital regulary for updates, splints, insoles etc and I kind of liked it I guess as it was quite interesting.

      My sister used to complain at me for being slow etc but in the end she just got used to it and saw that it was just who I was. Community wise noone could really tell that I had it as I masked it fairly well. I only rarely got the odd comment from a new friend etc asking if i had hurt my leg as I seemed to be slightly limping.

      So all in all, not really too bad.

      On to the positive. I found that you kind of grow into your hemi and it shapes you as a person. Also DO NOT EVER let someone say to your kid that they cannot do something. THEY CAN! They will just take longer to learn it and will have to adjust a few aspects to make it work for them. For example, driving---> Go automatic.

      I was told by the doctors that I could never put on muscle on my left side due to the receptors not being there. Even so, I decided to give it a try as I was sick of being tall and incredibly thin. The consultant at my last checkup was shocked/very impressed that I had managed to do this. I kind of do it now, to show that I 'CAN BEAT IT' and I 'CAN DO IT'

      I would suggest getting your kid to exercise his/her hemi area regulary to minimise the damage and train it back up for dexterity and strength. I found that doing the exercises was a bit monotonous as a child and so I learnt to play guitar instead. I could only play simple chords no finger picking stuff but that pretty much did the same exercises but in a more fun way.

      So really, any hobby etc is good but if you can get one that exercises the affected area then its win win.

      Obviously it depends which hemi you have, right/left/alternating etc but I found some areas of maths very difficult and hard. I got round this by just breaking down tasks into small chunks and just going over and over and over the topics until I culd make some sense of it. Somethings still confuse me but it helped tremendously.

      The above has reminded me about breaking things down. Due to having a poor attention span and inability to compute large amounts of information I found that breaking anything down helped alot. I do this myself now but I didn't realise that my parents did this alot for me aswell in my youth. I believe it helped me alot and so I recommend that that may be something looking into.

      Again sorry for the late reply. I hope it helps somewhat. If you need anymore advice or just want to talk, drop a message here and i'll try and get back to you more promptly next time... :D

      I hope your baby is ok and all turns out well


    2. I'm so happy that I found this site! I have a boy now 8 with hemi and he has the physical stuff like balance, difficult to see depths. The vision side is hemi related he gets around it in his way. It's in not visible things I worry about. He has difficulty in geometry, he can't draw geometrical symbols. He easily "wander off" and I noticed that instructing step by step keeps him going. It's good to read your stories and hear how you have found ways around the hemi. And your are so right in saying that stuff time but you can do it!

  5. I didn't know anything about hemiplegia before I started following you on Twitter. Thank you for sharing, if only everyone could read posts like this, like Mr Cameron for instance!

  6. I'm only just realising that maybe the reason I'm so bad at maths is because of hemiplegia. There are certain bits of maths that I just have a mental block on; I wish I'd known this when doing my GCSEs!