My cerebral palsy and epilepsy journey. Cerebral Palsy Awareness Month

SaraC_Scope

I was diagnosed with right sided hemiplegia at the age of one in 1977. I had my first seizure at the age of two and was diagnosed with epilepsy soon after.

In the early days physio was part of my childhood routine, and I accepted it. But as I got older, I noticed people would stare at me when we were out and even though I felt the same as them, something was different. I didn’t always commit to my physiotherapy sessions.

Mum and Dad didn’t explain what cerebral palsy was until I was older. My epilepsy was more unpredictable. I never knew when the seizures would happen so family plans could change, and I felt guilty about this.

I don’t have one type of seizure. They present as focal, tonic clonic or absence. I always experience an aura before each seizure which acts as a warning. It gives me time to tell someone or get to a safe space. Information on Epilepsy Action seizures

My school years were particularly hard. There was a lot of bullying and teasing and I started to hate these conditions. At moments during my early years, I assumed the exercises would make my hand and leg better. I started to find ways of hiding my CP. Even now if I have a photo taken, you’ll see my hand hidden behind my back. Having epilepsy meant I was excluded from a lot of friendship groups. On reflection children were scared about what was happening to me.

In 2007, after trying loads of anti-epileptic medication, we hit the jackpot and I’ve been almost seizure free for 18 years. In moments of stress, I’ve experience small absence seizures, but I have coping strategies to minimise these. One of the side effects of anti-epileptic drugs (AEDs) is problems with short term memory and insomnia. This is another frustration, but I weigh up what would I prefer? I go everywhere with a notebook and my phone holds my appointments. I have stopped feeling guilty for having days at home where I sit on the sofa watching TV. It’s part of my recovery.

My parents are great advocates, and they supported me through all the ups and downs. They encouraged me with my education and starting a Youth Training placement with the local authority. I experienced some discrimination in the early days, but I educated my colleagues about CP and epilepsy. I was successful in my first full time job with the council in 2001 and stayed until 2019.

I met my husband Gareth in 1994. We were 18 at the time and it took a lot for me to open about my disabilities. He wasn’t going anywhere though and accepted me for being me. He’s been a great support over the last 30 years. I do find it difficult when I must allow him to do up my laces, during a walk through the park, or cut up my meal when visiting a restaurant. He’s also had to learn how to manage my seizures. I was unwell during a trip to Canada. We were away as a couple and when the seizures were continually happening one night, he had to think about where the local hospital was and administer medication. Cerebral Palsy and epilepsy have a ripple effect on those around you. Gareth and I have a solid relationship and love attending comedy gigs.

My conditions don’t define my life. When my seizures calmed, I started volunteering with Epilepsy Action. This increased my confidence and led to me making the decision to train as a counsellor. After I qualified, I came across a new service with Scope, which was the Parent Adviser role supporting parents of disabled children. Alongside this role I spent time getting to know the CP Network, supporting Richard and gaining a deeper understanding of cerebral palsy. In 2024 a role within the CP Network team was advertised and I was appointed the CP Specialist for Cardiff.

My lived experience of these co-existing conditions has opened doors to new opportunities and meeting the right people along the way has allowed me to reach a place of acceptance about my disabilities.