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03rd June 2016

What is it like to have a learning disability and epilepsy?

According to the IHAL Health and Care project (link: 20% of people with a learning disability in England also have epilepsy.

My Life My Choice member Shaun Picken explains what life is like for somebody with a learning disability and epilepsy…

I was diagnosed with epilepsy when I was 7 years old. I felt scared because I didn’t know what was going on. The first time I had a seizure I was in the kitchen and collapsed onto the floor.

I remember the tests being difficult. They put wires on my head to check brain activity while I did things. I still go for quite a lot of tests. Last time I had to breathe in and out deeply for 3 minutes and it made me feel really dizzy. My epilepsy also means I go and have a flu jab every year.

My mantra is “live your life to the full.” I try not to let having epilepsy affect me but it’s tough. I’m scared that I might have a seizure. Every time I do it feels like a battle for survival. I don’t know how long the fit is going to last or how bad it will be until after it has happened.

Day to day it affects me quite a lot. One minute I can feel okay and the next I feel really dizzy. There are things I can’t do, such as take a bath on my own. I would never be able to work on a building site.

The triggers for my epilepsy are stress, heat and blood so these are things I try and avoid. I talk through my worries with people so I don’t get stressed. I feel much happier when the weather is cold!

My Dad is my main carer, and he is really good. He knows exactly what to do if I have a fit. If somebody is with me when I have a fit, they need to make sure the floor around me is clear, ring an ambulance, and then put me in the recovery position once my fit is finished.

In my experience, paramedics are awesome and understanding. They make me feel better after I have a fit.

Shaun Picken of My Life My ChoiceQCS Expert Learning Disability Contributor

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