According to the World Health Organisation Epilepsy is the world’s most common serious disorder of the brain1. It’s an “unseen” neurological condition that disrupts the normal electrical and chemical activity in the brain.
With the right community support and understanding, people with epilepsy should have the same opportunities as others, however sadly people living with epilepsy often find they become socially isolated and have difficulties finding steady employment which can lead to a plethora of other issues. For example the risk of suicide in people with epilepsy is estimated to be 10 times higher than in the general population2.
Considering some of the facts about Epilepsy it’s always great to hear stories from those who manage their symptoms and are working to achieve their goals. One such story is that of Ben Edmunds. We at NDSP have been lucky enough to meet and have a chat with Ben, whose experience with Epilepsy is filled with ups and downs. When diagnosed with Epilepsy, Ben’s doctors told his parents that he may not see his 20th birthday. Now 25, Ben continues to defy those odds and is making decisions that will see him achieving his goals in no time.
Meet Ben …
Thanks for taking the time to talk to us Ben! Let’s start with a little bit about you …
I’m 25 years old and live in Perth!
My interests include; Going to the beach as much as possible, usually for a swim, always for a long walk. Leighton and Mosman Dog Beach are my favourites. I usually go with my Mum and sometimes with April (a support worker I have been seeing since 2014/15). April was supporting me with conversation after I had lost my speech and helped to build up my confidence. I still see her every second Friday.
I go to concerts, live music, Stand Up Comedy, Comedy festivals, Fringe Festival, with Mum usually, she likes introducing me to new things and is happy to listen to the bands I like – I’m really relaxed with her!
I go fishing and crabbing with Dad, I love it and also wish I could go on Fishing trips up North with he and his friends, but it’s a bit risky and Dad would be stressing about me too much in some of those remote locations.
I like art and go to exhibitions with Patrick, another Support Worker, who has an Arts Degree. He has the day planned and we usually go to exhibitions at Universities, which I really like, as I get a feel of where my friends who’ve gone to uni have been and just watch the students walking around.
Whenever I go out, it is always an opportunity to eat at different places and try new things! I love food and always have a meal somewhere, from quick sushi to pubs, restaurants and cafes.
Dealing with the challenges that come with epilepsy is no mean feat, can you tell us a little about your life to date, starting with your diagnosis?
I was diagnosed at 12. I had a Tonic Clonic on a family holiday in Bali. This was the first seizure that my family witnessed, although I may have had some in the past – it’s impossible to know. Of course, this was a terrifying time, at first the Dr’s thought it was Encephalitis and in the hotel room at the time everyone thought I was going to die, my little sister has never forgotten it. We had to stay in Bali for a while, but the International Hospital was good and I had all the appropriate tests in Denpasar. I had all the tests again when I returned to Perth and was at that point given different medication.
My seizures were kind of controlled but did have focal and absence seizures. The early days meant I had to always be careful, eat often, stay hydrated, I could no longer have sleep overs, as fatigue was and is the biggest trigger. By the time I was 14 I had to stop Surfing and had to quit Surf Life Saving as it was too risky.
I was still part of the school swim team and had someone watch me, Mum came to all the races. A Phys Ed teacher insisted I leave Outdoor Ed, there was a meeting with the Principal etc Mum really tried and offered to be at the classes but I wasn’t allowed, this was the first time I remember being angry – I was jealous of the other students. I became really annoyed at some students who didn’t appreciate the fact they could participate.
As I got older the seizures became more intense and it took me much longer to recover afterward. If I had seizures in the morning, I still wanted to go to school and so I’d go at recess – I really liked my school and friends. By year 11, even with extra reading time (which helped) I was exhausted by the end of the school day, and by year 12, I didn’t do exams as the stress of them would then be a trigger.
I ended up doing an Apprenticeship after school, but I suffered a seizure on a very hot day (apparently it looked like I’d fainted) and I wasn’t allowed back, that was an awful time for me. The company said that they’d accepted the Epilepsy but no seizures at work were allowed!
I tried new medication over this time, hoping to stop the seizures. Our Neurologist, Dr Nicholas Lawn who’s a lovely man was away and another Doctor recommended an alternate medication, which after reading about my Mum refused as there were so many side effects.
The Dr persuaded Mum that she was wrong. So, as I really wanted to be better, we went ahead with the transition. I ended up having many more seizures on this medication and after 2 unsuccessful visits to a Local Emergency Department, we ended up at Royal Perth Hospital (RPH) on one occasion. I was unconscious and by the time I was assessed had lost my speech, I was left with a brain injury.
The Registrar at the time at RPH was so concerned, she put many things in place until Dr Lawn returned back from overseas, we were in the best place with a great team. I then had ongoing OT and Speech Therapy for 2 years.
At this point in my life, having nearly no social life was the toughest, my school friends were busy at Uni, at parties, they had new Uni friends, new work friends but I only had them. I had a girlfriend for a while, she was cool with it but I knew her parents weren’t happy and were uncomfortable with it, so I just ended it without really explaining.
I waited for invites to anything but, I understand now that they wanted to just party and not worry about me and of course witnessing seizures is awful for them. I was angry with all of it and despite it putting me at risk, I did drink beer when I went out which made my friends all the more nervous, so from the ages of 19-21 I wasn’t often asked to hang out.
It was a very lonely time.
There have been about 16 transitions with medication. After all the testing in Perth, it was still difficult to pinpoint exactly what part of my brain the seizures were coming from, but With Dr Lawn’s support we went to visit a well-known Neurosurgeon in Melbourne. Unfortunately he refused to help and left me feeling quite distressed, that was the first time I really cried. I remember feeling so scared and hopeless … I had been upset before but this was pretty bad.
Mum kept reading and found a team in Sydney at Westmead Hospital, again with Dr Lawn’s support we went back and forth. I went through a really invasive test called an SEEG, I was there for nearly 3 weeks. I didn’t look too good afterwards … I’d lost weight, had a shaved head and when we tried to head back to Perth, the Airline wouldn’t let me board until they’d spoken to the Specialists.
Months later after all the evidence was collected and analysed, I was approved for a specific Surgery, Dr Bleasel, Dr Dexter and the team over there at Westmead were amazing and really kind, I’ll always be so grateful. I still have seizures as there was a risk to my sight if the surgeon wasn’t super careful, but my quality of life is so much better, maybe 70%!
And, with ongoing speech therapy and literacy support, I’m improving all the time I think.
Speaking more specifically, what are the main hurdles you find yourself up against when it comes to epilepsy in your daily life, and what do you do to manage those?
I can’t drive, so I have to rely on others and taxis.
Finding employment has been near impossible, employers are so afraid of Epilepsy. Before my surgery a Job Agency found me work as a Volleyball Umpire, I did that for about 2 years, it was Ok, I was really grateful but I was on my own, sitting on a stool, I really did need to meet people and have a social life. I left just before my surgery. I struggled going back as my brain had changed and I could no longer cope with the crowd and noise. I’ve worked through that now and I know my limits and my triggers.
I did get work with Kmart and I was so happy to be given a chance, it was from Nov 2018 to Feb 2019. I was told I’d become permanent part-time, as were two other guys from my employment agency, but once school holidays ended our shifts did too. I was really disappointed and too embarrassed to tell anyone.
I found work as a Volunteer with the Maritime Museum in Fremantle and still really like it. I have never had a seizure at the museum, so I know that if the environment is good and the people are great, I’ll be fine, so that makes me feel much more confident.
With your specific experience in mind, can you give some advice for our readers as an NDIS Participant?
Make sure you find the right support people/workers. You have to feel really comfortable with them and find workers who share your interests. Good support people sincerely care about you and always build a good rapport with your family.
Be clear about what you like doing and be open to new experiences, the support is there to improve your life and knowledge.
Make sure you feel safe and comfortable enough to trust your support people and go out of your comfort zone. For me I had to work on my confidence, I had to order food, ask questions, pay the bill, converse with strangers and other things. If you aren’t comfortable or don’t feel well you have to be with someone that supports that and helps.
Try to keep busy, have a regular routine. Prepare everything ahead of time, such as clothes, medication, water, make sure your phone is charged.
For me having the same support person/people is important as I like to build a friendship, I didn’t want a new person every week. If that sounds like you, make sure you communicate it to your agency.
And what advice do you have for someone in your position who may not yet be an NDIS recipient?
Don’t hesitate to apply, make sure you have as much documented medical support as possible – from all your health providers such as; doctors, speech therapists, OT’s, Physiotherapists.
Ask them to go into detail about how your condition affects your daily life, explain the barriers and especially the emotional impact on yourself and your family, and make sure you include your siblings. Provide information of the possible setbacks you will and may encounter in the future.
Tell your own story and think about how you want your life to improve.
You chose Plan Management as part of your NDIS Plan, what do you see as the benefits to Plan Management and why you chose that path?
Being supported and guided toward better options regarding support workers, Allied Health and home support.
There are so many agencies and people to choose from, it’s important to find the right people as soon as possible and not having to change. Finding people and agencies that are registered, professional, accountable, that follow all the necessary guidelines. I need to feel safe, use my funding wisely and focus on my own wellbeing and keep improving
And lastly Ben, what are your goals for 2020?
As usual, to just get on with it.
Building a stronger relationship with my younger sister, it’s been pretty scary for her from when she was 9. There’s been times she’s been so terrified during one of my seizures, it has really affected her. It’s been very difficult for her to live at home with me, but it’s better now and I am glad for that.
Because of Covid-19, concerts and shows have been cancelled, although I’m so pleased that everyone is Ok here, I’m really looking forward to going out and checking out the crowds. General socialising – a catchup with friends at home and in Northbridge.
I’m looking forward to going back to volunteering at the Maritime Museum and really hoping I’ll get a permanent casual position. Being employed isn’t about the pay for me, it’s about feeling useful and that I contribute and am valued in the workplace. I am proud to be in the uniform – I love it.
When I meet people and I’m asked again, “What do you do Ben?”, I can say “I work at the Maritime Museum”, Instead of feeling uncomfortable and not being like everyone else. Everyone whinges about work but I know I won’t, I can’t wait for that day! I’m hoping it’ll be 2020!!
I’m at the stage where I would like to try to live independently and see If I can manage away from my parents.
Thank you again for sharing part of your story Ben, and all the very best from the NDSP team!
NDSP is a NDIS registered provider specialising in NDIS Plan Management. If you are a NDIS Participant looking for the right Plan Manager, CLICK HERE to get in touch with our friendly team today.
World Health Organization. Executive summary. In: Atlas: Epilepsy care in the world. Geneva: WHO, 2005
0 Begg S, Vos T, Barker B, Stevenson C, Stanley L, Lopez A. The burden of disease and injury in Australia. Canberra: AIHW, 2007