Neil Balme opens up on harrowing battle with epileptic brain seizures

Neil Balme was asleep in his Fitzroy home when he suffered a severe brain seizure out of the blue. Now he’s opening up on his shock diagnosis to raise awareness of life with epilepsy.

Neil Balme with son-in-law Mark daughters Kate and Georgia, wife Carmel Balme and grandson Sam. Picture: David Caird

AFL legend Neil Balme has opened up on his harrowing battle with epileptic brain seizures after his shock diagnosis three years ago.

In September 2020, Balme and his wife, Carmel, were asleep in their Fitzroy home when he suffered his first seizure.

“It’s lucky my wife was there because if I was on my own I don’t know what would have happened,” the Richmond senior club adviser said.

“I was making crazy noises and shaking, and I was sort of knocked out. She was terrified.

“She tried to make sure I was breathing and checked my heart and realised something bad was going on so she rang triple-0.

“I woke up in the ambulance going, ‘Where the hell am I?’ I was in hospital for a few days and they sort of figured it out.”

Balme is sharing his story to raise awareness of epilepsy. Picture: Michael Klein

Balme played 159 games for Richmond in the 1970s including the 1973 and 1974 premierships and coached Melbourne for 98 games in the ‘90s.

The 71-year-old is considered one of the driving forces behind Richmond’s 2017, 2019 and 2020 premierships and Geelong’s 2007, 2009 and 2011 flags.

Balme suffered a similar frightening seizure overnight at home less than a year after the first, and again woke up inside an ambulance.

He had his third and final seizure in late 2021 after he slipped up on his medication regimen while on a trip with mates to the bush on the Murrumbidgee River.

“My doctor had said, ‘We might be able to reduce the amount of these drugs you’re taking; let’s see if we can quietly do that’,” said the father of four and grandfather of two.

“Unfortunately to me that meant ‘stop taking them’, so I kind of half stopped taking them and I probably drank a bit much.

“It was only a relatively minor one, and fortunately a couple of my friends there were doctors and they were able to make sure I was all right.”

Balme in action for Richmond at Moorabbin in June 1977.

Balme, who has no family history of epilepsy, was shocked by the initial diagnosis.

“They said, ‘By the way this (seizure) is related to epilepsy,’ and it was only then I started to think, ‘what the hell is epilepsy?’” he said.

“I said, ‘How do you get it? Did I catch it?’ And they really don’t have an enormous amount of information on that.

“They said, ‘why you suffered it could well be through your own mental state, anxiety, drinking too much, not sleeping well enough’ and all of those things, which I was probably guilty of to a degree, but it wasn’t an enormous problem.”

Balme has made crucial contributions to Richmond premierships both as a player and administrator. Picture: Michael Klein

While Balme still has to limit his alcohol intake, his epilepsy is now well controlled by medication, and he knows he is one of the lucky ones.

One in 25 Australians will develop epilepsy, a chronic neurological condition that most commonly develops in children, adolescents and people over 60.

Balme is sharing his story to raise awareness in his role as an ambassador for the Walk For Epilepsy fundraising campaign, to support people living with epilepsy.

The campaign will start on October 1 and conclude with a treadmill challenge on October 25.

Learn more at walkforepilepsy.org.au