Kirk Dicker says he will lose his voice soon.
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Before it happens, the Sisters Beach father and former Rosebery mine worker is in the process of banking his own voice.
People with motor neurone disease may want to bank their voice for future use within high-tech augmentative and alternative communication systems.
“I’ve got about 1600 phrases to put onto a computer to send to be digitised,” he said.
”It means I can record saying `I love you’ for my five-year-old child to hear.”
Mr Dicker is determined not to let life pass by and is “living life to the fullest” and “creating happy memories”
“My priority is my family; and we all know what the end result is. I want to do things while I have the ability to do so, and cram in as much laughter and cuddles.”
Mr Dicker is one of more than 40-people in Tasmania with MND, the name given to a group of diseases in which the nerve cells controlling the muscles that enable people to move, speak, breathe and swallow undergo degeneration and die.
People with MND have an average life expectancy of two to five years.
As part of MND week people are telling their stories to raise awareness.
Mr Dicker and Boat Harbour Surf Lifesaving Club, where he’s a founding member, raised funds through the Kirk Dicker Challenge Crazy Craft Race to support MND research, hoping for a cure.
A donation was made to the Menzies Institute where PhD student, Emily Handley, formerly of Boat Harbour, is looking into changes between brain connections that take place in the early stages of fronto-temporal dementia and MND.
“I’ve been humbled by all the support from the surf club, my old workmates and the community,” Mr Dicker said.
His work mates helped renovate his house to sell and the surf club raised money for an all-terrain wheelchair that got him back on the beach.
Mr Dicker’s first symptoms of MND happened on a family holiday in 2013.
He found it was hard to walk in thongs and his calf muscles were cramping.
“In the end it will stop me from breathing and this will happen with all my senses intact,” he said.