KEVIN Gleeson has had symptoms of incurable motor neurone disease for eight years.
Most sufferers, however, survive only a few years.
The Tweed resident was officially diagnosed with the disease in February 2011.
In May, he'll march alongside family and friends to raise awareness of the condition.
Having experienced symptoms for more than eight years, Mr Gleeson is among a minority of people who survive beyond five years.
The condition affects everything from arm and leg function to speech, swallowing and breathing.
Mr Gleeson's first symptom was slurred speech, but he initially ruled it out as nerve damage after he had a non-malignant tumour on his face.
At the time, his doctor said the procedure could result in nerve damage and Mr Gleeson did not know much about motor neurone disease.
Today, Mr Gleeson communicates with the help of a tablet.
The Tweed man used to manage bakeries on the Gold Coast, until he was forced to give up his job.
"I'd planned to work to the age of 70," Mr Gleeson said.
Mr Gleeson said events organised by MND NSW were hugely significant to sufferers.
"It is a terrible disease and they help people like me know they are not alone."
Mr Gleeson said it's not just those who have MND who suffer; it's hard for family and friends as well.
However, Mr Gleeson is among a lucky few who have slow-progressing motor neurone disease.
There have been a number of similar cases throughout history, including Stephen Hawking, now 72, who was diagnosed at the age of 21.
Regional advisor for MND NSW Chris Carroll said 80% of their budget came from fundraising, which goes to client services and research into motor neurone disease.
JOIN IN: Walk to D'Feet MND is on next Sunday, 10am at Chris Cunningham Park. Pre-register online, mndnsw.asn.au.
Walk to D'Feet MND: Sunday May 4, 10am
Chris Cunningham Park, Jack Evans Boat Harbour.
Pre-register online by Sunday April 27: mndnsw.asn.au
Member with MND Free
Adult with T-shirt $30
Adult without T-shirt $25
Child 5-16yrs with T-shirt $12 (children under the age of 14 must be accompanied by an adult)
Child 5-16yrs without T-shirt $8 (children under the age of 14 must be accompanied by an adult)