A slight twist of his mouth is the only way for 'Mr A' to communicate with his loved ones A twist of the mouth - that is all 'Mr A' can do to communicate. Paralysed from the neck down as Lou Gehrig's disease ravages his body, the 57-year-old former company executive can only lie in bed - hearing everything, his mind as alert as ever, but with his muscles and nerve cells wasting away, robbing him of the ability to move, talk, eat or touch his loved ones. What does he miss most? Mr A stares at his wife as she recites the alphabet one letter at a time - the form of communication the couple mastered about four years ago when the disease, also known as amyotrophic lateral sclerosis (ALS), robbed him of the power of speech. He twists his upper lip just a bit when his wife hits the right letter. D-i-g-n-i- ... there is no need to wait for the exchange to finish. 'He needs more dignity; he always said that. He is a proud man and he got sick. He needs at least sick people's dignity,' his wife says. The first symptom of the degenerative disease came when Mr A's fingers became weak and he was unable even to grasp a piece of paper, constantly dropping it, his wife recalls. Doctors made their diagnosis after several tests in the 1990s and told the couple about the disease and its awful consequences. There is no cure, no treatment. 'He was not very emotional about it. He accepted the truth. No strong reactions. It was the same with me,' she says. There has been no time for tears, she says. Laughter has kept the family going - that and the thought that, perhaps, a cure will be found. A year after diagnosis, Mr A could no longer walk, needing a wheelchair to get by. 'Every two months it is like he goes down another step,' his wife says. In late 1998, when the family was mourning the death of Mr A's mother, he developed pneumonia. Doctors advised him to have an operation so that feeding tubes could be inserted under his skin. For 10 days, Mr A refused to have the operation. He worried he would become a heavier burden on his family. 'I had no power to change his mind. I just wanted him to have the operation because life is very precious,' his wife says. 'Then I think he knew that if he did not have the operation he could not see his [eldest] son find a job, see his son's graduation, his sons having girlfriends - and he couldn't watch television,' she says, laughing. Within less than two years, Mr A was back in hospital for a tracheotomy to ease his breathing after he choked on his sputum. Since then he has been bedridden. For 30 minutes each day, two helpers ease him into his wheelchair to take him to the bathroom to see to his toilet needs or bathe him. Mr A needs about $10,000 a month to keep him alive. 'We are using our savings. I do not know for how long our savings can keep,' Mrs A says. The important thing to do now is to make sure he is breathing properly 24 hours a day, she says. 'For more than three years, he has not had to use the ventilator. That means his lungs are still good. 'I tell him, 'You still have a wheelchair to move around, so I will push you to any place you want. You just live healthy. One day you might be 70 and by that time there might be a cure. You will recover. [Then] I will sit in the wheelchair and you will push me',' she says.