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From an epilepsy diagnosis to making a difference in the epilepsy community: how an award-winning volunteer turned his life around

19 Jan 2018

Epilepsy Action has long been celebrating the superstars of epilepsy. These are the people who work tirelessly to help people living with the condition.

Epilepsy Action’s Volunteer Awards and Edwards have been recognising people’s wonderful work for years. Now, the charity has combined its celebrations to produce one grand and prestigious ceremony – the Epilepsy Action Awards.

These awards will continue to celebrate the fantastic volunteers and fundraisers helping to improve life for people with epilepsy. They will also carry on recognising the fantastic nurseries, schools and colleges supporting their pupils and students with epilepsy. Alongside these, the new awards will expand their reach to celebrate even more people. These include the fantastic healthcare professionals and employers making a difference to people’s lives.

And they include people like David Gilmour, a campaigner who has devoted much time to helping bring change for people with epilepsy.

“I was diagnosed with epilepsy in 1993 at the age of 30. I had my first seizure at my home. All I remember is hearing the theme tune to Coronation Street. Fortunately, my girlfriend at the time was with me and got medical help. The next thing I knew, I was waking up in hospital at about 1am. My memory was a complete blank. All I was aware of was the stiffness and muscle pain. I was confused about what had happened to me. The lost time during my seizures that I can’t account for has always been difficult to cope with.

“A few weeks later I had a few more seizures on the hospital ward, and my diagnosis was confirmed. I have temporal lobe epilepsy and I have tonic-clonic and focal seizures.

“I have been through a wide range of medicines. I was not able to tolerate some that I was prescribed. Today, I take Keppra (levetiracetam) and Epanutin (phenytoin). Thanks to my medicines, I still have the occasional focal seizure, but I am more likely to have short absences. There has been a huge improvement in how severe my seizures are.”

Devastating effects

“When I had my first seizure, I was working as a driver for the local bus company. I was automatically forbidden to drive. When my diagnosis was confirmed a few weeks later, I was told that I would have to be discharged on medical grounds. I had always wanted to drive buses from when I was very young and I loved my job. To be told that I would no longer be able to do what I loved was devastating. I really went through a grieving process when I handed my driving licences back.

“I was also a local councillor, working daily with constituents and attending committee meetings covering all aspects of council’s responsibilities. I was very fortunate that when I took ill, I was well supported by my fellow councillors of all parties. However, I had to resign my seat about a year later, as I needed a quieter life to get back to health.

 “It took a few years for me to become well stabilised on an epilepsy medicine. There were long periods of reflection on my own. My relationship had broken down, not just because of the epilepsy diagnosis. My family were fantastic support, and my GP and my epilepsy consultant were outstanding. But when I was on my own it was not unusual to have ‘down’ periods and even tears. I also had to contend with limited eyesight due to an issue with my medicine from the beginning of my epilepsy. Although I would now be considered able to drive with regard to my seizures, I don’t meet the eyesight requirements anymore.

“I found it impossible to find a job, as my qualifications were out of date. I wanted a job and to be self-sufficient, so I enrolled at my local college. The staff encouraged me to study and I managed to graduate with a distinction. I then got into the University of Ulster to study Social Policy and Sociology. I was 40 when I enrolled and was the oldest on the course. My three years were fulfilling, challenging and fun. I was even given the nickname ‘grandad’ by my (younger) fellow students, which was all in good humour. This time for me was also life-changing.

“My interest in politics has been there for as long as I can remember. So the opportunity to study the process of policy development was really enjoyable for me. My degree led to my current job as a researcher for a local Member of the Legislative Assembly (MLA). It has given me a very busy and fulfilling life.”

A real achievement

“I became aware from an early point in my diagnosis that there was not an easily accessible route to information for newly diagnosed epilepsy patients. I wanted to ensure that other people could find the information they needed more easily. I got in contact with Epilepsy Action and things developed from there. I have enjoyed being able to speak to many individuals and families about epilepsy. As a volunteer, I was part of a team that went to local schools to speak to pupils and teachers. We wanted to help children with epilepsy to be safe and secure at school.

“I was then able to take my campaigning into politics. I was able to speak to local government ministers about the challenges people with epilepsy face. This job is never-ending, but I’m not giving up! If I can see real developments in services for people with epilepsy during my time campaigning, I will be happy.

“My top moment in my campaigning work was talking to a young father. He had been diagnosed with epilepsy and was totally confused about how to proceed with his life. I went to see his employer with him, and when we came out of the meeting, he understood his job was safe. His employer also set up a meeting with his other employees so we could talk about epilepsy. I felt I had really achieved something that day.

“Also, the setting up of the All Party Group on Epilepsy in Belfast was important. This meant that there was a direct link into the government circles for Epilepsy Action. I felt it was significant to have been a small part of that.

“Personally, I found volunteering helped me to learn about and understand my own epilepsy, and epilepsy in general. To then be able to pass on that knowledge to others and to help them, where possible, has been a huge privilege. Everyone has a role they can play by using their gifts and skills. I encourage anyone to get involved as a volunteer.

“In the aftermath of an epilepsy diagnosis, people are left stunned and perhaps facing life changing decisions. To be there to help them get the right information or even to talk to them over a coffee is a big help. It is a huge development compared with what was available when I was first diagnosed.”

Doing what I believe in

“I was invited to the Hillsborough Castle Garden Party earlier this year as a result of my campaigning work. This is a royal garden party at the Queen’s official government residence in Northern Ireland. I was very shocked and very honoured to receive the invitation. I live in a traditional two-up, two-down terraced house, so to be invited to a Royal Garden Party was out of this world for me.

“I was delighted that Epilepsy Action’s Northern Ireland local manager Clare Watson could join me. Despite the wet weather and the very muddy conditions underfoot, it was a huge honour to get an invitation. There was a tremendous atmosphere and excitement was in the air from the moment we arrived. It will be a fantastic lifelong memory for me.

“I see working to improve services as something essential and something I really enjoy. It’s lovely to receive an award from Epilepsy Action or an invitation to a Royal Garden Party. But I am just an ordinary person doing what I believe in.”

 

The Epilepsy Action website has more information on volunteering and the Epilepsy Action Awards.  

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