Corkman: My life with epilepsy

NEXT Monday, February 13, marks International Epilepsy Day. This is an annual event organised by the international Bureau for Epilepsy, and the International League Against Epilepsy to raise awareness about epilepsy and its impact on individuals, families and communities around the world.

Epilepsy is a condition affecting more than 40,000 people in Ireland, and 50 million people worldwide. In Ireland, one in every 115 have this condition which can manifest at any age, with rates rising in the over 65s.

It’s a neurologic disorder which affects the brain, and people with this condition can experience seizures, but 70% of those are thankfully able to control them with medication.

Although epilepsy is a pretty common condition, there are many different types, and no two people with the condition experience it in quite the same way.

In some cases, people with this condition have a tendency to have repeated seizures due to sudden disruptions in the electrical activity in the brain, but due to the amazing work of scientists and doctors, there are great strides in this area now with medications keeping the condition under control, and research being constantly updated.

However when seizures do occur, or perhaps for the first time pre-medication, they can sometimes result in loss of consciousness, involuntary movements, or a change in behaviour.

Thankfully, people with epilepsy can lead full lives in the knowledge that there are many different supports and treatments in place which are tailored according to their specific needs.

Epilepsy Ireland do fantastic work, and right here in Cork there are two dedicated support workers, Niamh Jones and Sharon O’Connell, who are community resource staff dedicated to providing support, advice, education and awareness.

“Through Epilespy Ireland we have established support workers right throughout the country from Malin to Mizen Head,” said Niamh.

We have lots of events and information for families including ‘Sibshops’ which are for children aged 8-12 who have siblings with epilepsy. This empowers children with knowledge of what to do in the event of their sibling having a seizure.

“We also have an intitive called ‘Get Chatty’ for children aged 10-13 who have epilepsy, and a monthly meet up for young people aged 18-24 too. We also run mid-morning Mindfulness programmes and ‘Steps’ – Self Management programmes.

“We encourage parents, family members, and all those who are close to those who have epilepsy to get in touch with us, and we would be more than delighted to offer them support and answer any questions that they might have.

“There are many myths floating around about this medical condition – for example that you have to put something in a person’s mouth in the event of them having a seizure, but this is not the case.

“However, there are some things that we would like to make the public aware of in the event of somebody having a seizure.

“These are the main three things:

Time the seizure - this can be useful information for the medical team.

Keep them safe – put the person on their side and have something under their head and cover them with a blanket, or a hoodie or whatever is to hand.

Stay with them - call an ambulance if the seizures last for more than five minutes.

People who are seizure free for 12 months can drive a car, or light van, tractor or motorbike, which of course must be decided in conjunction with their medical team.

ONE CORKMAN’S STORY

Liam Burke is an engineer from Cork who was diagnosed with epilepsy when he was ten years old, and is now almost 50, and as he says himself: “I’ve plenty of experience at this stage.”

He recalls when, as a child, he was having breakfast one morning before school, and then the next minute he was waking up on the kitchen floor, seeing his concerned parents standing around him.

“ I think it’s only in recent years when I had to attend some grief counselling that I have adequately addressed and accepted my feelings on what having epilepsy means to me,” he said.

Going back to that morning in 1983, I had no clue what had just happened to me.

“We sought medical help, and I remember the neurologist in the hospital doing lots of tests, including having this weird helmet of cables and electrodes put on my head, with equally weird paste smeared on my hair, and lots of breathing in and out. (I learned later that it was called an electroencephalogram, ECG).

“So there I was, having been diagnosed with epilepsy and put on medication, which worked well, and during those early years going to primary school, it really didn’t have that much impact on my life at all.

“Then when I was around 15 or so, attending neurology clinics regularly and getting good feedback, we agreed that it might be worth a try weaning me off the mediation as I hadn’t had any episodes since my first seizure. This worked fine... for a while!

“I was always a night owl, I loved staying up late, watching TV, listening to music or reading and of course not getting enough sleep.

“One night, my sister came home after a late night out and found me sleeping on the sofa - no big deal - but when she woke me up I started to get twitches, and even though I tried to convince her I was fine, clearly I wasn’t.

“So it was back on the medication again and thankfully a return to having my seizures under control,” he recalled.

Life can sometimes be challenging for teenagers trying to cope with surging hormones, the ups and downs of attraction, and peer pressure to conform and fit in.

If a teenager also has a medical condition such as epilepsy, that can bring about added pressure.

Liam explains: “Progressing through my teens and onward, I was getting into the space of hanging out with my friends in a more unsupervised atmosphere, going to clubs and pubs and meeting girls.

“I was avoiding alcohol for the most part, and I felt like a spectator watching the lads getting fuelled up on extra beers and bravado, and then hearing about their hangovers over the following days. I remember that we were all laughing together, except that I was laughing just to be included.

“This stage of growing up framed me into believing that I was something of an outsider, not really part of the crowd, and it followed me though the years up until quite recently.”

Liam’s teenage experience outlines why it can be so helpful for teenagers to seek support.

Support worker Niamh explained: “Since Covid, we can now have online support groups where teenagers can come together with others who are also going through the same thing.

“They don’t even need to turn on their cameras if they don’t feel comfortable. In this way, they can just listen if they want to, and connect with other young people who are also going through the same thing. We aim to empower people with epilepsy and their families,” she said.

Liam has certainly leaned all about self-empowerment and has a great attitude to life. He started to cycle during the pandemic, he has joined a local athletics club, and goes running once a week.

“ My wife has even taught me how to swim, - which I was terrified to start with - but now I love it. Of course, I have supervision due to epilepsy, but that doesn’t take away from the experience or the enjoyment.

“I have learned to accept that I can only live my own life, and not the life of someone else. This is my hand of cards, it’s up to me how I play it.”

Information: www.epilespsy.ie

Cork Community Resource Officers:085-9866628/ Sharon O’Connell 085-8766626

https://www.epilepsy.ie/content/seizure-first-aid

About Epilepsy Ireland

Epilepsy Ireland’s vision is to achieve a society where no person’s life is limited by epilepsy.

Since 1966, they have remained committed to working for, and meeting the needs of everyone with epilepsy in Ireland, their families, and carers.

As per their Strategic plan 2022-2026, their key aims are as follows:

To empower people with epilepsy through support and education.

To centre people with epilepsy and their families in the work of Epilepsy Ireland.

To work collaboratively to improve the care of people with epilepsy and knowledge of the condition.

To transform perceptions of epilepsy and public policy relevant to the condition.

To increase and diversify their income streams.

To demonstrate the highest standards of governance and ensure structures are in place to meet objectives.

Their values are RESPECT:

- Respect

- Empathy

- Support

- Person-centred

- Empowerment

- Collaboration

- Trust.

Their mission is to empower all those affected by epilepsy to achieve their full potential by providing high-quality community-based support and education, raising public awareness, conducting effective advocacy, and supporting research.

For further information on epilepsy and Epilepsy Ireland, visit www.epilepsy.ie.

About International Epilepsy Day

International Epilepsy Day, a joint initiative created by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE), is a global event celebrated annually on the second Monday of February, to promote awareness on epilepsy right around the world.

With IBE and ILAE representation in more than 140 countries, this is a powerful opportunity to highlight the problems faced by people with epilepsy, their families, and carers, in every region of the world.

This is a day for everyone and every organisation:

no matter where you are.

no matter how small your group or how wide your geographical spread, no matter whether your focus is on the medical or on the social aspects of the condition. International Epilepsy Day is the opportunity for all stakeholders to join and speak with one global voice.

The objectives for International Epilepsy Day are:

to raise awareness of the disease at international and government level as well as in the public

to strengthen the epilepsy movement by uniting epilepsy associations in a worldwide campaign to raise visibility on epilepsy and encourage discussion about epilepsy.

Further information can be found by visiting the following website – https://internationalepilepsyday.org/