BURNIE’S Barry “Lurch” Pateman needs feeding through a tube and has lost 43 kilograms after being diagnosed with motor neurone disease.
In less than two years, Mr Pateman has gone from 120 kilograms to 77 kilograms, and he is still deteriorating.
His wife Karen said his respiratory muscles no longer worked.
“He is using his stomach muscles to breathe and that won’t last long,” she said.
The Ice Bucket Challenge is aimed at helping people like Mr Pateman.
The challenge has caused social media frenzy in the last month raising awareness and millions for MND research.
It has also drawn a lot of criticism.
MND is a group of diseases in which the nerve cells controlling the muscles undergo degeneration and die.
Mr Pateman, diagnosed with MND last year, was excited by how much awareness this challenge has garnered as it was a little-known disease that didn’t receive any government help in Australia.
“I was rejected for a pension because they [Centrelink] didn’t know what MND was,” Mr Pateman said.
“When you are going through these things people don’t make it any easier.
“The more you do, the weaker you become.”.
His children, Ethan, 7, and Charlee, 6, along with Mrs Pateman, participated in the Ice Bucket Challenge last week.
“I encourage everyone to do it; we tell everyone about MND and will until the government steps up and says ‘yes we will put some funding into MND’,” Mrs Pateman said.
Mrs Pateman said the reason behind the challenge was the ice and cold water took away your breath, so for a moment you knew what it felt like to live with MND.
“Lurch can’t cough. He has to lie at a 45-degree angle otherwise he can’t inflate his lungs.”
She said people did not die from the disease, but its effects included starvation or suffocation.
Mr and Mrs Pateman returned home after the diagnosis and went straight back to work, unable to process the enormity of his diagnosis.
“Once reality set in, we did all the things we were going to do when we retired,” Mrs Pateman said.
Last year the family travelled to Queensland to visit the theme parks, they went on a cruise and travelled to Western Australia in a caravan.
“I didn’t want him to sit on the couch waiting to die,” Mrs Pateman said.
“We did it to make memories with the kids. We made sure we took photos.”
Mr Pateman had to quit his job, despite feeling healthy.
While MND has been physically and emotionally difficult for the family, the financial impact has been huge.
“They don’t know what causes MND so they can’t find a cure or even a treatment – there is no support either,” Mrs Pateman said.
“We have to pay things on our own, we have spent $70,000 in less than two years.
“If it weren’t for our friends, we would have been screwed.”
To see Karen Pateman’s Ice Bucket Challenge, visit www.theadvocate南京夜网.au.
This story Administrator ready to work first appeared on Nanjing Night Net.