AFL legend and Motor Neurone Disease campaigner Neale Daniher will share his personal battle with the disease at Wednesday’s GV BRaIN event.
The former player and coach stepped down from his general manager role with West Coast Eagles in September 2013 citing health issues.
Unbeknown to the public, almost a year before Mr Daniher had been diagnosed with MND.
‘‘There was weakness predominately in my fingers and a weaker handshake, so my symptoms were in my right hand,’’ he said.
‘‘Some people lose their legs first, some people get diagnosed at first with slurred speech, in my case it was weakness in my hands.’’
After noticing the initial weakness it took a further nine months for Mr Daniher’s doctors to diagnose him with MND.
Mr Daniher said as an active person he did not really know what MND was or that it could affect him.
‘‘I didn’t even know what it was when I was diagnosed at 52, back in 2013,’’ he said.
‘‘There definitely wasn’t a lot of awareness of the disease in my direct family.
‘‘It wasn’t long until I worked out from my initial doctors and GPs it wasn’t a disease you wanted to be diagnosed with because there was no effective treatment or cure.’’
While he felt there was a lot of information around regarding MND, Mr Daniher could understand it was probably a lot tougher for people with MND in the regional areas.
‘‘Obviously I’m in Melbourne and to go see people there’s not much distance, obviously it’s a bit more different out in the regional areas,’’ he said.
Since his diagnosis Mr Daniher has established not-for-profit charity FIGHT MND, which envisions a world without the disease.
The charity raises money in various ways, including the online sale of beanies.
Mr Daniher said with every beanie purchase the buyer went into the running to win two tickets to the AFL grand final.
The AFL has become a massive support of FIGHT MND, establishing the annual Big Freeze event during the Queen’s Birthday round.
Celebrities take a dip in a freezing pool of ice and water, which is intended to mimic the freeze of sensation symptoms caused by MND, all to raise money for the charity.
‘‘Look, it’s been absolutely fantastic for the cause, because there’s no effective treatment and cure,’’ Mr Daniher said of the Big Freeze.
‘‘It’s basically been an underfunded issue because it only affects a small number of Australians, it doesn’t get the intentional focus even though it’s a deadly disease.’’
Mr Daniher will speak on behalf of FIGHT MND at GV BRaIN on Wednesday at the GV Hotel in High St, Shepparton and hoped people would walk away with more general awareness of the disease.
‘‘I’m going to talk about adversity and how adversity can affect us all in different ways,’’ he said.
‘‘I’ll talk through my personal story and how I’ve been able to find opportunities within all of that ... to find something positive out of this diagnosis for me.’’
Tickets for GV BraIN are $75 each and are available online at http://riverlinksvenues.com.au/whats-on/event-details/!/calendar/event/gv-brain-presents-neale-daniher
To purchase a Big Freeze beanie and contribute towards FIGHT MND go to the website at www.fightmnd.com.au