Week by week, her life changes for the worse. She can no longer go to the bathroom alone, or dress herself or wash. She notices she can no longer grip a cup as she once did. She fears eating out will soon become too embarrassing to contemplate. "I end up wearing more food than eating it," she says. It is the lack of dignity she hates most.
She is brave and determined but knows that, barring a miracle cure, her prognosis is not good. Most sufferers survive just three years from diagnosis. She has already lasted four. But when the time comes, she wants to die quickly.
Next week she will appear at the House of Commons to explain why she believes there should be a change in the law so that she can die at a time and in a manner she chooses.
At a seminar arranged by the MP Piara Khabra in challenge to some of his "pro-life" colleagues, she will sit alongside Sir Ludovic Kennedy, the newly elected president of the Voluntary Euthanasia Society, to put her case.
The opposition is trenchant. Last year, some MPs even signed an early day motion condemning the BBC for broadcasting a Dutch film, Death on Request, that showed a motor neurone disease patient asking for and receiving medical help to die.
Annie, 45, plans to explain what it is like to know that you are going to die young, in a painful or humiliating way, and that your preferred death - with dignity - is forbidden by law. "I've had a wonderful life over which I've had control," she says. "Now I want a dignified death over which I have control, too.
"They say it is up to Parliament to protect people's human rights. But how do they think they are doing that?" she says, from her elegant Victorian home in Middlesex.
"I've lost 15 friends with Aids and both my parents with cancer. These people can end up in a state of pharmaceutical oblivion and they still take days if not weeks to die. This is not something I expect in a civilised society. Is it really where the best interests of the patients lie?"
Annie has always supported voluntary euthanasia. Her mother was a nurse who brought home tales of suffering and she has never believed that life is sacred whatever the circumstances.
Her opinion has been strengthened by her illness, which kills a thousand people a year. Its victims include the journalist Jill Tweedie and the actor Cyril Cusack. Articulate and vivacious, Annie cannot bear the thought of being completely dependent on those who love her and unable to do anything for herself.
While today she still loves trips to the theatre and opera, at some point in the future she believes she will not. For her, the physical deterioration - within a brain which remains fully active - means there will be nothing to live for. But, of course, at that point it will be impossible for her to do anything about it. She will be too physically weak to commit suicide and for anyone else to help her die would be a crime.
For 15 years, Annie was an air stewardess and shop steward, before turning down a promotion to fulfil a teenage dream of going to drama college. Afterwards, she appeared in theatre and built up a cabaret show. To supplement her earnings, she also set up her own company teaching the negotiating and training skills she learnt with British Airways. She enjoyed life.
Four years ago, she noticed twitching of the muscles in her legs which signalled the onset of her illness. Now she cannot get out without the help of her partner of 18 years, Ron Hicks, and a close friend from her days in cabaret, Martin Seager. "The sacrifice they have made is enormous," she says.
She does not want to die and certainly not yet. "I'm not just sitting in a depressed state thinking about nothing else but death. But I can see my deterioration. Every week there is something. One week I can pick up a cup, next week it's difficult and the following week you can't do it at all."
As the law stands, she faces a huge dilemma. "Do I do something about this while I still can or do I wait until the thing progresses and discover that I'm right and that I cannot bear the quality of my life?"
Nearly half of the doctors questioned in one survey said they would help a terminally ill person die if it were legal. She and fellow campaigners believe it would be feasible to draw up strict rules to govern cases of people suffering incurable illnesses who would like medical help to end their suffering.
The option should apply only to the terminally ill, she says. They would have had to express their desire to die over a period of time, not just once in depression. Two doctors should back the decision and the police and judiciary should be informed. In Holland, where such deaths are allowed, there has been no "slippery slope" extension of the rules, she says.
Ideally, she would like to die with Ron and Martin and other close family and friends around her. She wants to do so "with peace and dignity" and argues her quality of life would improve today if she knew it was possible.
She desperately hopes to win over some of the parliamentary opposition - even if any eventual change in the law comes too late for her. "I hope that hearing me will make them realise that this isn't a dry academic issue," she says. "It affects people every day of the week. It could affect them tomorrow."Reuse content