PETER Kilgannon, 45, of Sylvania, has an illness that can kill within three to five years of diagnosis, but he still wakes up smiling.
Despite being diagnosed with motor neurone disease in June last year and told he had two years to live, he said he had plenty to live for, including his beautiful wife Heike, 43, and children Hannah, 2 and Henning, seven months.
Motor neurone disease (MND) is a terminal neurological condition in which people lose the use of their limbs and ability to speak, swallow and breathe.
The onset of symptoms is different for each person. All the more frustrating for sufferers is that the mind and senses usually remain active.
"Living with motor neurone disease is like living with a constant shadow," Mr Kilgannon said.
"It is in your thoughts, your dreams and your conversations, but at no stage have depression and despair gripped me. "It brings other things into perspective."
At least 10 people are diagnosed with MND each week in Australia. Its cause is unknown and there is no known cure.
Mr Kilgannon attends Calvary Hospital Kogarah and said he was fortunate that his diagnosis coincided with the launch of an international trial of a drug that may help delay the onset of symptoms.
He said knowing researchers were attempting to treat the disease made things "less difficult".
"I live for my family and this gives us time. It's not an imminent death sentence," he said.
"Heike and I have bit of a plan now and we're taking things one day at a time. It gives us the opportunity to go away and do things as a family."
While about 30 to 40 per cent of people with MND are retirement-age, Mr Kilgannon is a relatively young sufferer.
MND Australia says that while motor neurone disease may have a relatively low public profile, the MND community is "extensive, committed and immensely supportive".
The organisation is supporting calls for a National Disability Insurance Scheme (NDIS) that extends to people who are aged 65 and above at time of diagnosis.
Mr Kilgannon said there was much support for people with MND in St George and Sutherland Shire.
International MND Day is this Thursday. Details: mndnsw.asn.au,