Gidday! My name is Stan and I am a retired farmer. Last year I had a stroke and it has left me with epilepsy. I had my first major tonic clonic seizure whilst I was in the hospital, which scared my family, and now I am back living at home with my wife in a retirement home.
My anti-epileptic medications are controlling my seizures well but I have temporarily lost my driver’s licence, which is a bit of a nuisance, as I feel that I have lost my independence and my memory! Mind you, I am well supported and I am back to enjoying life.
Hello there, I am Ngaire and I am Stan’s wife. My word, the stroke was a bit of a fright, but watching Stan have his tonic clonic seizure was certainly a bit scary. We have involved the EWCT epilepsy advisor and she has prepared an individual epilepsy action plan for Stan. We now know what to expect and how to get help.
I didn’t realise that many people over 60 years of age experience epilepsy for the first time in their lives especially if they have had a stroke.
Kia ora whanau. My mates call me "Jumps!". When I was really young I had these little jumps when I was waking up. My arms would jump up and I had no idea why but I was later diagnosed with epilepsy at about 8 years’ old. Before my seizures were controlled with meds I would get tired and I struggled at times at school to learn. I think that having epilepsy made my memory poor at times too.
I always imagined that I would become a mechanic but I have never had enough seizure control to get my driver’s licence and so I became a social worker instead. I have never regretted that decision because I reckon that my epilepsy has made me a better person in understanding others.
Kia ora. My name is Kiri. I have a few more months before my baby is born and it is such a blessing. I grew up having lots of those tiny seizures called absence seizures and my brothers would complain that I was always day dreaming. One day, though, I had a big seizure and that scared the living daylights out of them.
I always wanted to be a mum and I have met a fantastic partner who wants to be a dad. I have had to plan my pregnancy well. My neurologist changed my meds and I take folate and iodine. I haven’t had a seizure since being pregnant and I am hoping for a good birthing experience with my midwife there to guide me. Kia ora!
Kia ora. I am Rawiri and I am Kiri’s partner.
I have met the best woman in the world! Poor Kiri was a bit embarrassed to tell me about her epilepsy but I have learnt a lot about the condition by attending her hospital appointments and discussing it with our local epilepsy advisor. There is a lot of stuff online as well. I have noticed that stress causes Kiri to have more seizures but interestingly she has had none since being pregnant.
Kiri is doing all the right things like taking her meds routinely, twelve hours apart, and together we have read up about how to care for our baby. We are close to our whanau and we are all counting down the days before our baby is born. Is it a boy? Is it a girl? We don’t know, and that is what makes it all so exciting. Like opening up a present on Christmas day!
Hi, I’m Izzy and I am Ollie’s twin sister. I have epilepsy but he doesn’t. Mum said that there were difficulties with me at birth and that probably explains why I have problems now. I have lots of different types of seizures and I take two different types of medications. I have tried lots of others too. I don’t like it when I have my big seizures because I wet my pants and I feel embarrassed. Ollie is kind though. He looks out for me.
Hi, I’m Ollie. It is kind of special having a sister like Izzy. She makes me laugh and I can’t be mad with her because I know that some days Izzy has lots of seizures, from absence to convulsive, and she can sometimes make those funny little noises when she looks spaced out. Izzy isn’t in my class at school, but in the classroom next door, and she has a teacher aide to help her with her school work.
She hates it when she wets herself during a convulsive seizure but our school has had a visit from our epilepsy advisor and we have read “Ben’s Buddies” and “Ariana and Jack” and so we all know how to make Izzy feel safe and secure. Izzy will always have epilepsy. I hope that one day she will have better seizure control because I know that sometimes she feels really upset having them.
My name is Millie and I developed epilepsy when I was 25 years old after I suffered a brain injury in an accident.
I have now lived with epilepsy for approximately 40 years and have had periods of good, to poor control of the seizures. Pregnancies were a difficult time as I had an increase in the number of seizures experienced and also again when I became menopausal. Three times in my life I have had to stop driving for a year because of my epilepsy. Walking, busing and catching rides became the norm then. With a number of medication changes throughout the years and learning to recognise my triggers, I am now well controlled (well, my epilepsy is!).
A positive disposition, lots of grit and learning to accept I have some limitations has helped me to live a good life, pursue a great career and enjoy life as it is.
I am Sam and I am 4. I go to kindy and I like to play in the sand pit. My cousin Izzy has epilepsy. I like to play with her because she is my best friend. I know how to help Izzy when she has a seizure because Ollie has shown me. You have to stay really calm and not get worried. Sometimes Izzy makes these funny little sounds when she is having a seizure and then afterwards she needs to have a little nap because her seizures are really tiring.
Hi there. My name is Ishaan and I have epilepsy and I know that it is a neurological condition. I have no idea why I have epilepsy but perhaps I have a genetic mutation causing me to have seizures. For a while there, I had little seizure control with my medications but fortunately my neurologist has found the right ones for now.
I no longer have tonic clonic seizures but I believe that I occasionally still have absence. This has meant that I can’t drive a vehicle but I can catch the bus to work and lead a good life. I take control of my seizure triggers by maintaining good sleep routines and managing my stress, which at times can be tricky. I find that kicking a ball around with my mates after work helps to reduce my stress.
Hello, I am Meg and I am the epilepsy advisor. My job is to support and advise people living with epilepsy. It is a rewarding job and I love the people that I meet along the way. My focus is to improve the quality of life for everyone directly, or indirectly, living with epilepsy. To do this, I have to have a really good understanding of epilepsy so that I can answer all of the interesting questions that are posed, such as “What is epilepsy? How do you get it? How do I take my medications correctly?” It is also important that people feel supported wherever there is a need, such as in schools, at hospital appointments or even in employment. I will be there!
A good part of my job is also to give epilepsy awareness seminars and to hold social events around the region.
Epilepsy is a complex neurological condition which can affect anyone of us at any time. There isn’t a cure for it as yet but maybe one day soon there will be.
Hi, I am Sam and I developed epilepsy after having meningitis as a child. I have about four different kinds of seizures and many medications to control them, but nothing seems to work! I was hoping that I could have brain surgery to help me but that isn’t possible either. I try not to get down about it but some days can be tough, especially as my memory is pretty poor. I write down everything and I leave notes all over the place to help me to remember the things that I have to do in a day.
I enjoy getting out and about with the others in the epilepsy social group and I know that many others live with challenges just like mine.
Remember me? I am Ariana and I starred in a book entitled “Ariana and Jack”. It told my story of having epilepsy. Remember how I needed to have an EEG to help to diagnose my epilepsy and how I was prescribed medications to control them? I have learned to take care of myself by remembering to take my medications regularly. I really enjoy school, because I play with my best friends there. I enjoy writing and art and one day I hope to be able to write and illustrate a book on animals.
This is Jasper and he is Trina’s best friend. Jasper has been trained to stay close to Trina, who has a syndrome, and so she has many different seizure types which are largely uncontrolled. Trina enjoys having Jasper around because he licks her face clear of saliva when she is having a tonic clonic seizure, and he stays close to her. Trina and her family raised a lot of money to have Jasper but it has been the best thing that has ever happened to them.
Hi! My name is Trina and I was born with epilepsy. I always seem to be up at the hospital with my seizures because nothing seems to control them. I am now trying the ketogenic diet to see if that will help.
I am really excited to have Jasper and I feel reassured that he will be there for me. My family is really supportive and they encourage me to enjoy life. I really love riding horses and I get to go to a special place each weekend to ride my favourite pony, Spark. I know that there is no cure for epilepsy yet but hopefully one day there will be.
My name is Sally and I am 7 ¾ years old. I don’t have epilepsy but I like to hang out with my friends Ariana, Trina, Izzy and Ollie at school. We live nearby to one another and so we are able to play after school as well. I feel kind of sad when I see my friends having their seizures but I know how to help them. If you read “Ben’s Buddies” that will help you to know what to do too. When I grow up I want to be a doctor or a nurse so that I can help people with epilepsy.