Maureen’s story

Maureen is one of our Talk and Support Volunteers.

“I started having temporal lobe focal impaired seizures when I was 40 years old. It was a bewildering, frustrating and worrying time. I often felt isolated and confused about what to expect from seizures, medications and the general impact on my life as a whole.

With the support of the fantastic neurological team at the Norfolk and Norwich Hospital and the Epilepsy Action website, I learnt about my epilepsy, how to manage the condition and adjust to day-to-day life.

When I retired, I wanted to help other people feel more confident about all aspects of their epilepsy.

At our group meetings, people can get practical support about all aspects of living with the condition. I help members to find information on the Epilepsy Action website and encourage them to contact the hospital team for further support where necessary.

More importantly, the group is a safe space where people can share experiences in a friendly and supportive environment. They are often relieved to speak to others who understand and have similar concerns. Topics can range from dealing with PIP, to side-effects of medications and work-related issues.

During each session, I try to ensure that each person leaves feeling reassured, with practical support to use in future.

Being a volunteer is always interesting and can be fun too! I love to see people join the group, learn about their condition and move forward with positive plans for the future. Other members rely on the group for long-term support. It is also reassuring for me, especially in dealing with the physical, practical and mental aspects of living with epilepsy.

I’ve learned how complex it can be, especially as everyone’s epilepsy is different and their individual seizures can change constantly. I’ve gained more understanding about the challenges they face. With the support of the charity’s training sessions, we try to improve the way the groups are run to give the best help possible.

Volunteering has been so rewarding for me. The group brings together people from diverse backgrounds, united in a common cause. I always enjoy meeting them and listening to their stories, which in turn improves my own skills and knowledge. The role is always challenging and interesting. It fulfils a massive need within the community.”