Greenisland man inspired by Epilepsy Action support to establish new Carrickfergus group
A Greenisland man has been inspired by the help he received to set up a new support group in Carrickfergus for people affected by epilepsy.
Paul Strain, 52, is launching the coffee and chat sessions following his own positive experience at a similar Epilepsy Action group in Belfast.
The first drop-in event will be on Wednesday, November 20, 11am – 12.30pm, at Carrickfergus Community Forum, Lancasterian Street.
Paul was diagnosed with epilepsy nine years ago. His wife found him when he was having his first tonic-clonic seizure and had to call emergency services as he was completely unconscious. He has no recollection of the paramedics escorting him out of his house and said it was really scary when he came round and found out what had happened to him.
He recalls feeling in total shock when he was eventually diagnosed. His first seizure had totally come out of the blue and there was no previous history of it in his family.
Paul has focal epilepsy but also has tonic-clonic seizures. At the beginning of his diagnosis, he used to have around three to four seizures in a day but now has three to four a month. They only last around two minutes but he says it can take days to recover.
“Some days I have to sleep for at least five hours – I just feel so tired. The seizures can also make me feel very emotional and down. The frustrating thing about them too is I get no warning before I have one. It can be really inconvenient depending on where I am, or even dangerous.”
He continued: “For the first seven years of my diagnosis, I felt really isolated and found it hard to talk about what I was going through. There was no support group near me but I eventually went to Epilepsy Action’s coffee and chat meeting in Belfast. I found it incredibly helpful to speak to people who have epilepsy - I instantly felt reassured. It gave me the confidence to share my experiences with people who were just like me.
“I then saw new members come along and it was great to be able to reassure them about what they were going through, and let them know we’re all on the same journey together.
“I really want to create a welcoming atmosphere, where people can share their experiences of epilepsy and see they are not alone. I know how isolating it can feel when you are diagnosed with epilepsy and I want to make sure other people don’t have to feel that.
“It’s so easy to internalise things and it can make you feel very depressed. Talking to others and sharing support really can help to lift your mood. By meeting others, you forge friendships and they deepen as you get to know each other over time and share experiences. This then gives you the confidence and encouragement to live your life and pass that on to others who are in the same boat.”
Epilepsy affects around 20,000 people in Northern Ireland and 87 people are diagnosed every day. Each year Epilepsy Action helps over two million people through a range of services, including the Epilepsy Action Helpline, freephone 0808 800 5050 and website, and network of local groups.