Sometimes the best way to find out about something is straight from the horse's mouth. So this page is to help anyone who wants to find out about what it's actually like to have hemiplegia. If you have hemiplegia yourself, you can submit your own story at the bottom of this page.
Chloe, age 14
I have had hemiplegia since I was born in 1994. I spent 99 days in hospital. At 9 years old I went to hospital and had an operation in the summer holidays. I am pleased to say I am walking the best I have ever done. It was not my hemiplegia which was bad it was the other problems I face in life. I don't like school because of the people, I get ignored all the time and then I have to have a help all the time because of health and safety. But I do like the teacher in the sports because they treat me the same as all the rest but if you don't or can't you don't have to. I would say this to other children with hemiplegia: A day is a battle but you are not the only ones who have to face the battle, whether it is getting dressed or your class mates. Think of all the good times you have had or look forward to a dinner, shopping or watch TV. I know about how hard school is but I am lucky because it really only affects my leg but always try and try again. Parents, I will say this: Give us time and help when we need it. Make your child feel needed. Love them and don't wonder what they could have been like. You must realise it is a battle for your child but you have got to help them in school like with homework and do your strength exercises because they really help. UNDERSTAND THAT SOMETIMES I AM WEAK AND NOT JUST LAZY. And get you child to join HemiHelp. It is great because you can do cool things and meet people who are like you. Mums and Dads you can ask questions and meet parents which are in the same boat. You can join HemiHelp online. Here is a poem that I wrote: Don’t pity me for my problems Admire me for how I can cope with them. If you notice the weakness of my body Also notice the strength of my spirit. Don’t feel bad about my struggle Respect me because I never stop trying.
Poppy, age 15
I have had hemiplegia since I was born. I am very lucky because I have had an operation for my leg so now I walk OK. It is not hemiplegia that is the problem; it is the problems hemiplegia makes. At first the kids at school were mean to me but that's ok, because I know that it's because they do not have hemiplegia and don't understand what it's like. If you have hemiplegia remember this: no matter how you are,if you are believing in yourself you can still do it. Parents of people with hemiplegia remember: like Chloe I am not lazy, but weak. And last of all, join HemiHelp, they can make differences.
Joe, age 4
Joe's mum says... I am writing about my youngest son Joe who is 4 and a half years old. He has had right sided hemiplegia since birth due to having a stroke in the womb,we didn't find out until he was around 8 months old. He is a very happy little boy but sometimes feels different from his friends who can ride bikes and scooters. Joe dosn't understand why he can't ride the same ones as them but recently Cerebra (a charity) gave us the funding to buy Joe a specially adapted trike that he can ride and he now feels like all his friends. Joe has been at nursery for 2 years and soon he starts reception class in a different school, so we're not sure how he will fit in although he has brothers and sister there. Apart from having a noticable limp and stiff arm (and limited use of his hand) he is a very happy boy and tries not to let his hemiplegia get in the way of having a fun filled life.
Nicholas, age 7
Nicholas’s mum says…Nicholas suffers from right hand side hemiplegia and we found out when he was about six months. Since he was diagnosed, he himself with a strong character and a 'the word can't is not in my vocabulary' attitude in everything he does, has meant that he has achieved far more than what we ever expected. He has always had such determination to conquer all his fears and disability, which do not enable him to do all the activities he wants to master, that we can but be in awe of his strength, determination and endurance for such a small person. His first challenge came when he was but two years and he was determined to swim, he practiced and practiced and after a long hard summer's work, he managed it. He has swum like a fish since then. When he was 4 we travelled to France and his brother and cousin wanted to go to an adventure park and take part in upsailing activities. So did he. And he did. I have the photos to prove it!!! These are but two examples of how determined and how much work he puts himself through to achieve his goals. He plays Hockey, goes to Jutitsu and most importantly, he has been riding his own bike without any side wheels for about a year. This challenge has been his crowning moment as it has taken him more than two years and lots of scrapes, bumps and tears. His determination has carried him through this. Even when I gave up, he never did. Again and again he climbed on his bike after a nasty fall and tried and tried again. He is my true hero. He endures daily morning exercises, an arm and hand splint together with a leg splint every day, he dresses himself, he showers himself, he has learned to eat with a knife and fork (that was really messy) and he wants to be totally independent. After innumerable sessions of physio, OT and speech therapy, daily exercises and daily sports activities, he still finds time to smile and takes it all in his stride.Even though I am his mother, I stand in awe of his great strength and his optimistic view on life.
Back to Top
Emily, age 19
I was born prematurely and have right-sided hemiplegia which mainly affects my right arm and hand, although there were certain activities that I struggled with when I was younger as a result of poor control of my leg. For example, I remember clearly when I was in infant school, and couldn't skip because I couldn't manage the hopping action with my right leg, and spent my breaks trying to work out how to do it. I fell a lot and once scraped all down my face when I fell but eventually I managed, and although this doesn't sound like a big achievement it mattered a lot to me. I also used to get bullied in primary school, as I often held my arm in a bent position, with my hand near my shoulder and my wrist bent, and was not aware that this is what I was doing as I was often unaware of my right arm / hand, and during occasional activities now, such as when I am brushing my teeth, my hand will return to this position. Most of the time, although I am aware that my right arm and hand are a lot weaker than my left, and I notice the difficulties this presents, I have learnt to compensate for the lack of strength and control in my right hand in everyday activities as well as other activities such as archery, climbing and playing pool as well as waitressing and bar work. Everything is more of a challenge for me than for other people, but by not doing things the conventional way, and finding a way that works for me I can do a lot of things I never thought i'd be capable of.That is not to say that life is without challenges, and that I don't get annoyed / frustrated at my lack of control. For example although I can climb, instruct climbing and protect other climbers on a rope in the event of a fall, the difficulty of climbs I can complete is much less than that of my peers. If I can't get a really large, easy hold for my right hand then I cannot progress. Normally this doesn't bother me, because I know I'm challenging myself and doing the best I can do…I guess what I'm trying to say is that sometimes it’s really hard, and I get angry and frustrated at the fact that I'm limited by hemiplegia, and the bullying when I was younger was incredibly upsetting but the phrase 'It's character building' springs to mind. It happened, it upset me at the time but I moved past it and it probably helped make me the independent adventurous person that I am today. I've accepted that hemiplegia is a part of who I am and compensate for it in everyday life. It creates challenges but that makes things interesting and when you learn to overcome some of those challenges, you feel like you have really achieved something. If you are someone with hemiplegia who is struggling or being bullied or your child is a victim of bullying as a result of bullying, then I know what you are going through, but this period, and what people say about you does not have to define who you are, like Poppy said, it is their ignorance that results in bullying, try to ignore it as much as possible and don't let your challenges get in the way of what you want to do.
What about you?
If you have hemiplegia, we'd like to hear from you. Tell us about your experiences of living with hemiplegia and we'll publish a selection of your stories on this page.
