Partners in life facing off against epilepsy

Matt explains his early life with seizures.  “My first seizure, a tonic-clonic one, was in 2006 when I was 14.  I was playing cricket in the backyard with my family when I began to feel dizzy.  Shortly after, I fell unconscious into a rose bush.  I remember waking up with a few scratches on my face but, luckily, my family was there to look after me,” he says.

“Three months later, I had my second seizure. This time, it happened while we were all on a family holiday on Lindeman Island. I was asleep at the time, but had to be air-lifted to Mackay Hospital.  After seeing a specialist, it was noted that due to my going through puberty, the increase in hormones in my body led to my first seizure.”

In addition, Matt says, he had had surgery when he was one year old for a cyst on his brain, which developed into hydrocephalus. “Doctors said that the seizures were originating from the same location as the brain surgery.”

“I then had a lot of medical appointments to find out what was going on and was diagnosed with epilepsy that same year.  My seizures are always the tonic-clonic type where I am rendered unconscious.”

Matt says it was at this point that his seizures were having a serious, negative impact on his life.  “They really affected my life when I was younger, especially my early adulthood when I wanted to go out at night with friends and when I was getting my licence,” he says.

“After getting my learner’s permit, my licence was suspended every time I had a seizure.  This happened three times while learning to drive, having to wait 3-6 months each time until I was given medical clearance to drive again.  This was especially frustrating in Year 12, when most of my friends were driving themselves to school.”

Matt says he continued having seizures in his late teens, but they were sporadic. “I tended to have them when I grew out of the medication or if I was overtired or, say, if I got up too early in the morning.”

Now 27 years of age, Matt manages his seizures well with medication and has been seizure-free for almost six years.  “They are much more under control now and are not really affecting my life at all.  Epilepsy is just a part of who I am.”

Matt is now working as one of the ground crew at Melbourne Airport, a job that entails shift-work, something that he acknowledges is not the best circumstance for someone with epilepsy.  He says his mum, Sue, who has since passed away, was very concerned when he first went into full time work. “She would say, ‘make sure you get enough rest, don’t go out too late’.”

“I’ve now been in this job for six months, waking up at three in the morning and sometimes working till 9.30 at night.  At first I too was concerned about how to do that without making my epilepsy flare up – the changing routine is not ideal when you have epilepsy. But so far so good; I’ve had no issues.”

In a twist of fate, Matt’s partner, Natasha Radovanovic, has also had experience with the condition as her younger brother, Milutin, has epilepsy.

“Luti had seizures in primary school and while, for the last five years, he hasn’t had one, they have flared up again recently. He is on medication and it is now under control, but he does have to manage his sleep and travelling as time zone changes causes problems too.”

Natasha says while it’s coincidental and unfortunate that both her younger brother and her partner have epilepsy, Matt has been a big help to her and her own mother since her brother’s diagnosis. “Matt has been able to explain how medication helps, about the importance of sleep and managing the condition, so that we’re now much more confident in letting Luti be independent. He is now living in England on his own, going to University and studying sports science and education.”

Matt’s mum was also right onto understanding as much as she could about epilepsy, to help her son. “She contacted Epilepsy New Zealand and got up-to-date information about epilepsy and medication options. I think she may have reached out for herself as well, to learn as much as she could about my condition.”

In a show of support and to demonstrate to their family that life with epilepsy can be satisfying, Matt and Natasha participated in the Foundation’s inaugural Walk for Epilepsy in 2018.  “Our motivation was to show support while raising money for the Foundation.  We raised $1,570, while also raising awareness among our families as well.”

This year, Matt and Natasha are planning to participate again in the Walk for Epilepsy and expect that an incredible turnout of 40 to 50 family members will participate, in support of the Foundation.

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