John Barnes suffers crippling memory loss, mood swings and epilepsy — symptoms that he believes are a direct result of head knocks during an AFL career spanning 15 seasons.
"It's terrible, I can't shower or bath on my own, I can't cook, I can't drive a car, I can't be left alone I have to be watched pretty much 24/7 — all the things people take for granted I just can't do," says the 49 year-old retired ruckman.
The former ruckman who played 202 games for Geelong and Essendon, says he is a shell of his former self and finds himself dazed and confused after unexplained outbursts of rage.
"My tempers pretty short at the moment, the things I find myself doing I don't really know why I am doing them to be honest, it's terrible …and gets worse by the day," says Barnes.
He suffered his first epileptic seizure in 2012.
"Coming back from the country races and my best mate thought I was dead we were just talking and I just went back and started frothing at the mouth and he took me straight to hospital, but I thought I'd gone," he says.
Barnes is heading a planned class action against the AFL which he says more than 100 footballers have joined.
"At the moment what they [the AFL] are doing is not working, how they've been able to get away with that for so long is what we are about, hockey and cricket offer workers compensation," he says.
His medications alone cost hundreds of dollars a month and he's had to give up his job driving a garbage truck, which he enjoyed.
"Jobs are hard to get once they find out you're epileptic — they don't want to know you — compensation for things like that you look at quality of life, which everyone else has got which I haven't got."
Barnes says the AFL has its head in the sand on the issue and is happy to take the organisation to court.
"It's getting pretty close to the numbers that we want, it could be happening pretty quickly, could be four weeks time to lodge it — we are ready to go," says Barnes.
That message has not got through to everyone, some current sportsmen believe concussions are part of playing a contact sport.
"It's my life, I'll do what I want to — well within certain rounds — but what's the alternative? I kinda like what I am doing, [the] consequence of that sometimes is you get hit on the head," says NRL prop for the St George Illawarra Dragons, James Graham.
"Just go and play Oztag if you don't fancy playing league anymore but I wouldn't get paid and probably wouldn't have as much fun anymore," says the 33 year-old Englishman.
Neuroscientist calls for more action from all football codes
Neuroscientist Alan Pearce isn't surprised former footballers are presenting with epilepsy, even though it is rare.
"There's evidence to show the risk of a number of different conditions including epilepsy can occur as a result of a history of head trauma and concussions," says Alan Pearce, who is an Associate professor at La Trobe University.
He says many athletes and former athletes come to his research laboratory showing signs of epilepsy.
"Repeated concussions or even repeated sub-concussive hits can manifest itself over decades — that someone who you wouldn't think would get epilepsy or seizures then starts to show uncharacteristic signs of brain seizures."
He is backing calls for more action on the issue from all sporting codes.
"While we can't stop the chance of someone being concussed what we really need to do is more research into the outcomes and how people respond and recover," says Pearce.
He says longer rest periods should be introduced as well as a need for cultural change.
"We need to change the culture so people are not going to say 'I am fine, I need to go back and play, I don't want to let my team mates down' — to allow them to have healthy playing careers as well as quality of life after they retire."
