Most MND sufferers have a good quality of life

No matter what is known scientifically about a particular disease or illness, it is indisputable that those who are actually …

No matter what is known scientifically about a particular disease or illness, it is indisputable that those who are actually suffering from it have a unique perspective. Kevin Duffy (59), from Dublin, has had Motor Neuron Disease for more than five years, and has been following the recent case of Diane Pretty. His illness has progressed to the stage where he is in a wheelchair all day and is almost totally dependent on others for help. He is reluctant to comment on his views as to whether he thinks the court were right or wrong in their decision.

"I can't think of the rights and wrongs of it. I can't project that far. The way I feel now, I'd want to live as long as I can," he says carefully.

While he might never want to utilise the option of choice which Pretty is seeking, he is cautious about the consequences those choices might have in a wider context, should they ever become available.

"I thought about this assisted suicide long before I had this disease. If you say yes to this . . .where do you go after that?"

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Duffy is clear that his own attitude is a very positive one, and that his quality of family support and care is continuing to give him a quality of life he values. Does he find the media coverage of Pretty's story disturbing or upsetting, given that the public would probably equate their illnesses as being similar?

"I can't say I felt sympathy for her," he says. "I found those pictures of her coming out of the court house very disturbing. I'm a proud person, and I go out in my wheelchair, I don't mind being seen. But I wouldn't want to be seen the way she was pictured. There are straps you can use and neck supports. You don't have to look the way she did, with her head twisted round. I found those pictures a bit political, the way she was being wheeled around for the cameras."

Eithne Frost is the chief executive of the Irish Motor Neurone Disease Association. It was founded in 1985 and currently has 235 people in the State who avail of its services. The association, which is primarily funded by fund-raising, offers advice and information, free use of equipment and a limited amount of financial support for additional care with advanced illnesses.

"We have only experienced one person who wished to commit suicide over the years," she says. While sympathetic to the Pretty case, she is also worried about the tone of the media coverage, and the representation of MND to the public.

"The strong language that is being used to describe her case is very worrying. It makes the condition sound so degrading. From our point of view, as professional carers, the use of that language is upsetting. And the vast majority of people who suffer from MND believe they have a good quality of life."

The Irish Motor Neuron Disease Association freephone is 1800-403403