ITV London reporter Martin Stew speaks to former firefighter John Chart.
A decade ago John Chart was a super fit fireman who held a world power lifting record - today he can't lift his own arms.
The terminal condition Motor Neurone Disease (MND) is stripping him of his physical strength but not his mental fortitude.
Much like his sporting heroes - rugby players Rob Burrows and Doddy Weir - he wants to raise awareness whilst he still can. "It's classed as the worst diagnosis in the world by the medical experts," John said.
"It's like you've got a remote control and saying right I'm going to start closing your body down but I'm not going to tell you what or when.
"It could be my diaphragm next and then I'd stop breathing," he explained. As many people suffer from MND as Multiple Sclerosis but John believes it doesn't get the attention. "Everybody is scared of MND. People seem to be scared to talk about it, it's like a dirty word and I don't understand why," John said.
He now wants the celebrity choir master Gareth Malone to help him give a voice to sufferers in the same way he did for military wives. "Eight out of 10 people with MND will lose the ability to talk or breathe so my dream is to get some sort of choir exhibition of MND sufferers and who better than Gareth Malone to help us with that. He's the man," he added. John's just returned from Nepal where he became the first person with MND to visit Everest Base Camp and sky dive from 23,000 feet.
With no strength left in his arms he was strapped to an instructor as he free-fell towards the ground.
Now back home in Penge, south London, John is desperately trying to get hold of the choir master. His health is fading but whilst he has strength left he's determined to make a difference. "It might be too late for me but it's not too late for other people's children."
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