Don’t Let Epilepsy Hold You Back
Andrew Jackson’s story is inspiring – not the 19th century US president, but a courageous epilepsy sufferer from Lincolnshire. Despite his condition, Andrew is a black belt in taekwondo, a fundraiser for Epilepsy Action and a proud father.
If you’re living with epilepsy or supporting someone who is, read on to find out how he does it.
Watching Out For The Warning Signs
Andrew, 39, developed epilepsy aged 2 years old after contracting measles. Over the years he’s learnt how to manage his condition, but it hasn’t been an easy journey. His seizures range from absences to multiple fits in a row without regaining consciousness – a condition known as status epilepticus.
“I’m one of six children and one of my brothers also has epilepsy. Another brother had childhood epilepsy but he stopped having seizures when he was about ten years old, so I think my family has a genetic predisposition to the condition.
“I take a variety of medications on a daily basis to deal with my epilepsy. I set an alarm to remind me, but I generally remember and have been self-medicating for years. My medication can have side effects such as making my hands shake, and one can make you very tired if it’s not taken at the same time each day.
As well as taking medication, recognising things that can bring on a seizure is important. Andrew knows that stress and extreme tiredness are triggers for him.
Kicking His Way Through Life
Although it still affects him from time to time, Andrew tries to not let his epilepsy get him down or control his life.
“My type of epilepsy hasn’t restricted what kind of activities I can do that much. I don’t have photo sensitive epilepsy, so can go to the cinema without any problems and I enjoy doing lots of sports.
“I’ve been doing martial arts for 22 years now, after being bullied at school about my epilepsy and lack of confidence.
“I first started kickboxing after finishing school and told my instructor straight away that I had epilepsy, but it wasn’t a problem. We were always careful and if I was sparring I wore a high impact head guard for protection. When my parents found out they were naturally concerned, so my dad came to watch one evening and he noticed that my confidence and coordination had improved a lot.
“At 21 I started taekwondo, and gained my first black belt in 2001 before becoming an assistant instructor for the club. After a few years break, I gained my second black belt and this year I gained my second dan black belt. I’ve also completed a para-taekwondo course, so I can adapt lesson plans if a disabled person were to train. Martial arts is great exercise and good fun!”
Passing on the Support
Andrews set up an epilepsy support service in his local area in 2012 to help other people struggling with the condition.
“I just wanted people to know that there are others out there with the condition too. I mainly receive emails and phone calls for advice which I treat confidentially – it’s good to talk about it and realise you’re not alone.
“I usually talk to people about how they’re coping with their epilepsy, if they’ve had any seizures since the last meeting and any questions they have. I never try to do a doctors job and discuss medication or say whether they should be on it or not.”
Volunteering for Epilepsy Action
Andrew has found Epilepsy Action to be a great help in terms of the support and helpful information they offer, and has contacted them numerous times over the years with different queries.
“I first came across them online when I was looking for information about status epilepsy, and found their website very informative. I especially liked the sections about other people’s experiences.”
To thank Epilepsy Action for their continued support, Andrew and his family regularly hold events and fundraise for the charity.
“About 6 years ago I asked the local paper to run a feature about my epilepsy experiences. My leap of faith paid off as they published it and I received a lot of good responses. Since then I’ve done lots of media work for them by contacting local MPs, speaking on local radio a number of times and in February this year I received an Epilepsy Action Volunteer award.
“My family has raised over £4,000 for Epilepsy Action through various sporting activities. My brother organised a professional race and my eldest sister ran the London Marathon this year in three and a half hours, both supporting the charity. A week later she also ran the Rat Race – a twenty mile race with lots of obstacles. My parents often ask for donations to Epilepsy Action instead of presents and there have been many other events we’ve arranged or taken part in too.”
Michael White, fundraising events officer at Epilepsy Action, was full of praise for Andrew’s efforts.
“We are incredibly proud of Andrew, whose tireless work in volunteering and campaigning has helped to significantly improve the lives of people with epilepsy. Volunteers are at the heart of our work at Epilepsy Action and many of our achievements come about because of their support and dedication.
“Thanks to your generous donations, Epilepsy Action can continue to improve the lives of the 600,000 people in the UK living with epilepsy. We offer a range of services, including our Epilepsy Helpline, specialist nurse scheme and award-winning website.”
A Christmas Charity Fun Day
Andrew has organised a Christmas-themed charity event in his local town.
“I came up with the idea for The Charity Fun Day to bring together lots of volunteers who are fundraising for different charities to give them the recognition they deserve. I’ve had lots of interest from people wanting charity stalls and to do sports demonstrations. Hopefully it proves to be popular as it’s the first one I’ve organised and possibly the first event of this kind in Horncastle to involve lots of charities and non-profit sports groups.
“Some of the causes we’re supporting include; Feet First entertainment, who get people involved in lots of fun activities such as stilt walking, unicycles and adapted bikes and gadgets; The Royal British Legion; Cats Protection; a local autistic boy who is raising money for a support dog; a breast cancer support group; Headway brain injuries, and Horncastle and District Photographic Society. They will have stalls around the outside of the hall to leave space for the entertainment in the middle of the room. There will be sporting events such as dance, ballet, judo, jujutsu and taekwondo, plus raffles, a fancy dress competition, Santa’s sack race and Stanhope Hall Cake Bake Off.”
Advice for Other Sufferers
Having lived with epilepsy nearly all his life, Andrew has plenty of helpful advice for people who’ve been newly diagnosed.
“Epilepsy can get you down when you’re first diagnosed as it’s difficult to cope with seizures and the changes it makes to your life. I didn’t want it to rule my life and only told a few friends as there can be a stigma surrounding the condition. Over the years I’ve found it easier to talk to others about my epilepsy as you often find out that you have a lot in common. I’d definitely recommend teaching friends and family the signs of a seizure and what to do if you have one, and find someone to talk to – it really helps to know that you’re not alone.”
We can’t always be with family or friends, so wearing medical ID jewellery is a simple way to carry your important medical information with you. Giving paramedics access to this information quickly ensures they can then treat you correctly in an emergency.
For more information about volunteering opportunities at Epilepsy Action, visit epilepsy.org.uk/volunteer or call the local services team on 0113 210 8800.
The information in our blog articles is for personal use only and not a substitute for professional medical advice, diagnosis or treatment plans. We are not medical health practitioners or mental health providers. If you’re worried about a potential medical condition, contact your GP or call an ambulance in an emergency situation.