Amanda Gainey can only imagine her dad's frustration when he struggles to speak.
"I have noticed there's been a couple of times recently, even just twice in one phone call where dad's just stopped and cried because he can't get the words out," Ms Gainey said.
There's times when Stan Bennett's speech is "fantastic" and times when it's tough.
Mr Bennett is one of over 2000 Australians living with motor neurone disease (MND).
He was diagnosed with the bulbar onset version in March, an aggressive condition that affects his ability to speak and swallow.
"Coming to terms with the initial diagnosis was difficult," Mr Bennett said.
But the 76-year-old is keeping a positive outlook on the situation, saying: "I am learning to enjoy each day as it comes, live it to the best of my ability and appreciate time spent with family and friends."
Mr Bennett has lived in Canberra for more than 50 years with his wife Pam.
He continues to go for walks, lift weights, eat healthily and see an exercise physiologist to help manage the disease.
His daughter, Amanda Gainey, said his condition was "unlucky" and "severe". She was surprised at how quickly it had taken effect.
"Almost every time I physically see him, I notice subtle changes in his speech, and I see him probably every fortnight physically. We speak on the phone pretty much five days a week," Ms Gainey said.
She hopes to explore getting her dad a voice bank to aid him with his speech.
As the MND spreads to other parts of his body, Mr Bennett suspects he "may need help with breathing and eating in the future and assistance with movement".
A group of Mr Bennett's family and friends will participate in the Canberra Walk to Defeat MND event on Sunday in his honour.
"Stan's squad'"have raised more than $2100 towards supporting people living with MND, surpassing their goal of $300 by a long way.
"I am overwhelmed by the love and support of my team of walkers, and I really appreciate the effort and support of the MND team who are organising the walk," Mr Bennett said.
Chief executive of MND NSW, Graham Opie, said the walk was a powerful opportunity for people living with MND to come together and meet each other.
"They find that there are like-minded people that they can actually speak with and that understand what they're going through," Mr Opie said.
Mr and Mrs Bennett hope to be there on Sunday, but the cold weather worsens his symptoms and may make it tricky to attend.
For Ms Gainey, events like the walk are crucial to raising awareness about the condition.
"The incidence of MND is lower than some other diseases," Ms Gainey said.
"I feel as though it's not on people's radar and as such, isn't perhaps understood or recognised for the serious condition and fatal condition that it is."
Despite an Australian being diagnosed with the condition every two days, Mr Opie agreed it was still "a relatively misunderstood disease".
"When somebody is diagnosed, there's always just this vacuum, this lack of knowledge out there and the first thing they really want to know is what it's all about," he said.
The money raised will go towards providing support for people living with MND and their families, including through equipment, support groups, education and more.
Mr Bennett said it was also "important to support research into the causes, treatments and medications for the disease".
"Little is known about the cause of MND and for now there is no cure," he said.
"With community and government support we can provide the funds for research to give us answers and hopefully a cure so that families in the future don't have to face this difficult diagnosis."
Earlier this week Minister for Health and Aged Care, Ged Kearney, announced the federal government's $2 million investment towards finding a cure.
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The Walk to Defeat MND Canberra is at 10am on Sunday at the Upper Commonwealth Place. You can donate and register to participate at walktodefeatmnd.org.au/canberra24.
