Living with Hemiplegia and Epilepsy

PoppyWe are asking for young people to write about their experience of growing up with and living with a disability to help us challenge negative perceptions and promote a wider understanding of different conditions. In this article eleven year old Poppy tells us her story.

“My name is Poppy and I have left-sided Hemiplegia and Epilepsy.  For people who don’t know what I have I will explain. Left-sided Hemiplegia means that you have a weakness on one side. Sometimes my arm does strange things. I use my left hand for steadying.  I also pick up the dice with my left hand when Mum and I are playing games. But otherwise I have difficulty using my affected hand and arm. I wear a lycra arm and hand splint to help stop my arm and hand from going everywhere.

My left leg has a high tone and that makes walking difficult. My left leg is also shorter than the right so I have a heel raise on my shoe. I wear a splint otherwise I cannot walk.

I had some surgery a few years ago because I could not walk at all then, because my foot was at an odd angle. I use a manual wheelchair sometimes if I get tired. I will be using a powered wheelchair around my new secondary school because it’s really big.

The type of Epilepsy I have is Focal Seizures. They are boring because you have to sit and wait for them to go away. This is what I think I look like.

I have to take medication twice a day but I still have seizures. My seizures make me feel woozy and I can’t think very well at school. Sometimes seizures upset my sleep and am awake during the night for hours so I am tired the next day.  My tummy feels odd too when I am having seizures and I go off food. I feel unwell for days before and after my seizures.

I like playing tennis with my Mum, which is good physiotherapy. I also have an adapted trike which I try to ride every morning before school, if I am feeling well enough. I love swimming but I haven’t been able to go for a while because of my seizures. I haven’t been able to attend my drama or karate clubs either because of feeling unwell. My seizures mean I miss out on lots of things. They are really annoying.

I was two when I got left-sided Hemiplegia, luckily I can’t remember anything. I was very poorly, and I could have died.  That is what Mum says anyway. I had E-coli and had to stay in hospital for seven weeks.

I got my Epilepsy when I was eight, when puberty started. So Mum thinks that my Epilepsy was triggered by puberty (which I agree with). I hope that means I will grow out of it. I really want to drive when I am older but if I still have seizures I won’t be able to.

I changed primary schools recently because I was having problems with friendships. It had been going on for a while. It made me feel like I was invisible. Now I am at a new school and it is better. I have nice friends. But I am told I am behind a lot and I need to catch up which stresses me out. Mum had a talk with school about avoiding saying I am behind because anxiety can trigger my seizures.

Hemiplegia doesn’t just affect my body though, it also has hidden effects – I can have difficulty processing information and with remembering. When I have seizures it affects these two aspects even more. Mum says I repeat myself a lot and get confused.

I have lots of hospital appointments and see lots of doctors and professionals. It’s really annoying. When they talk about surgery it upsets me and I feel worried.

I get up at 6a.m. every morning because I have a lot to do. I do daily physiotherapy and Occupational Therapy before I go to school and I practice washing and getting dressed, which takes a long time. I get really tired.

When I grow up I’d like to be an author. I’d like to have a family and be happy.”

If your child would like to write something for us we’d love to hear from you. Please contact Emma Thomas on emmat@cerebra.org.uk.