At 55 years of age, Eithne Ward was a live wire. The Dalkey, Co Dublin woman went set dancing three or four times a week, an interest which brought her all over Dublin. She ran the variety club which was part of her local ladies' club and she took an interest in amateur drama.
When little things started to go wrong, nobody could have imagined that she was suffering from the rapid and fatal brain disease, Creutzfeldt-Jakob disease (CJD).
For one thing she was too young - it normally affects people who are far older. For another, the disease is rare in this country - usually there are no more than one or two cases a year. That it is widely known at all is due to the emergence of variant CJD, thought to be transmitted by animals infected with BSE.
What Eithne Ward had was so-called "classical" CJD which has existed for a very long time - and which is similar to variant CJD in its effects. But any such possibility was far from her mind and from the minds of her husband and children when the little signs began to appear that something was wrong.
One day in November 1999, recalls her husband Ken, "a neighbour got her three items on a grocery bill and she couldn't add them up". On another day she mislaid the car when she brought their son Philip, the youngest of their six children, to school. She had walked by the car when she was looking for it without recognising it.
At first she suspected the particular HRT treatment she was on wasn't agreeing with her, so she changed it. That didn't work.
"About November she was having mood swings and everything and the girls would ring me at the time and say she's going mad, she's doing really crazy things and I said don't mind, it's just the menopause or whatever and just keep out of her way," says her daughter Rosemary. "She made a big issue over two of us coming home for Christmas, that she didn't want us to come home, that sort of crazy thing."
In March she got the family cat put down. "The vet didn't want to do it initially and she just kept pestering him and pestering him and she just kept saying to us there'll be nobody there in the summer to feed him," says Rosemary. "She just got the vet out anyway one day and the cat was put to sleep." At first they feared she had Alzheimer's. Her GP sent her to the Emergency Department in St Vincent's Hospital in Elm Park. The tests revealed nothing wrong. They went home but they were not relieved. "She was forgetting to eat and stuff like that," says Rosemary.
Their daughter Bairbre was a student nurse in St Vincent's and she compiled a list of symptoms and showed it to consultant Dr Michael Hutchinson. He told her to bring her mother in.
She laughed later about some of the silly questions they asked her: what day of the week is it, where are you, and such like. The trouble was, she couldn't answer them. Dr Hutchinson's team did MRI scans and other tests and at Easter they called the family in and told them they believed she had CJD. The outlook was hopeless. "Dr Hutchinson asked me how was I for taking time off work and if I would attempt to look after Eithne for about a month or so," says Ken. "I said I'd give it a shot and actually the month was about as much as I could manage because at the end of the month the deterioration had come so far that she had lost mobility."
They discussed whether to tell Eithne and decided against. Her periods of lucidity were now so few they felt it would be cruel to ask her to cope with this knowledge.
The rapidity of the decline was remarkable. Up to March she had still gone set dancing. Then, one night, she simply lost the memory of how to do the steps but she didn't know she was doing it wrong. "She'd say, `oh, men, they were all useless to dance, I was trying to show them where to go and they didn't know what I was saying,"' recalls Ken. Now, not much more than a month later, her awareness of what was going on around her functioned only intermittently.
Music and singing was an exception. "Her sister used to come down in the evening and play the piano and Eithne could sing the songs with her and some of her other friends came down and she just sort of danced around," says Ken.
When Ken could no longer care for her, the hospital made arrangements for her to be admitted to the hospice in Harold's Cross. She lived for another month and a half. Ken's employers, AIB, had told him to take the time he needed and to build his working day around his visits to Eithne. "I worked it out that I'd go in the morning to see her and occasionally you'd get a glimmer of recognition, but most times there'd be very little," he says. He remembers how the occasional smile from her "would sort of lift you for the day".
"They told me to keep talking to Eithne all the time; the last sense you lose is your hearing, apparently, even when you seem completely unconscious."
COMING towards the end, the hospice asked if there were any special dates coming up. "The only thing we could think of were Marian's Leaving results," he says. She died two days after the results came through.
Ken hopes his family's experiences can help others who may have to cope with CJD or variant CJD in the future. He got great help from the CJD Support Network in Britain (see panel) and is willing to help other families affected in this country.
Ken sees only one consolation in his family's experience of CJD: "I could never have managed to cope with seven years of Alzheimer's or 20 years of Alzheimer's, I definitely could not have managed to cope with that," he says. "Although it was heartbreaking to see the deterioration on a daily basis I said to myself, it's better than Alzheimer's."