Joost van der Westhuizen says that he is a prisoner in his own body, but he refuses to give in as long as he has a reason to be positive.
Joost was talking to The Daily Mail Online this week during a visit to England, when he told the publication that he wants to keep fighting until he has no more energy.
"I have a choice: either I stay at home and die or I live my life," he said. " People are told they are going to have two to five years to live. That’s bullsh*t. You live as long as you want. As long as you are positive. They told me I had 24 months (when diagnosed in 2011) but I’m now at 50".
Joost says the hardest part of his struggle is that he is still able to think and reason normally, but can't get his mouth or body to respond in time - a situation which he says makes him feel like a prisoner in his own body.
"My mind is unaffected. When I think about my answers, I think as if I talk normally. But my mouth and my tongue aren’t working. I am a prisoner in my body, he says, adding "it was hard (to accept at first) but you adapt. Either you adapt or you die."
*Picture: Facebook