Pratchett in $1m donation as he hits out over care for Alzheimer's

Published on Wednesday 12 March 2008 21:13

THE best-selling author Terry Pratchett announced a donation of $1 million (£494,000) today to help find a cure for Alzheimer's – the disease he was diagnosed with three months ago – and attacked the "shameful" lack of funding to fight it.

The writer behind the Discworld fantasy books spoke out against the patchy provision for thousands of sufferers of the incurable brain disease, saying he wanted to "kick a politician in the teeth".

Pratchett announced in December that, at 59, he had been diagnosed with a rare form of early-onset Alzheimer's after doctors thought he had suffered a mini-stroke. The author, who has sold more than 55 million books, delivered the news online in typical fashion, calling the disease "an embuggerance".

But today he was due to tell a conference on Alzheimer's that having the disease was like stripping "away your living self a bit at a time".

Alzheimer's affects 700,000 people in the UK, but only 11 is spent for each person a year on research, compared with 289 per cancer patient.

Pratchett said: "There's nearly as many of us as there are cancer sufferers, and it looks as if the number will double within a generation… It's a shock and a shame to find out that money for research is 3 per cent of that which goes to find cancer cures.

"Perhaps that is why, for example, that I know three people who have successfully survived brain tumours, but no-one who has beaten Alzheimer's."

The author hit out at a shortage of Alzheimer's specialists and said he was paying for his own drugs as he was "too young to have Alzheimer's for free". He said: "For those of us with early-onset in particular, it's more of a series of skirmishes. My GP is helpful and patient, but I don't have a specialist locally.

"The NHS kindly allows me to buy my own Aricept (an Alzheimer's drug] because I'm too young to have Alzheimer's for free, a situation I'm OK with in a want-to-kick-a-politician-in-the-teeth kind of way."

He said: "On the whole, you try to be your own doctor. The internet twangs night and day."

He took "more supplements than the Sunday papers", and compared remedies with other sufferers, the author said.

When he asked about having his mercury fillings removed, he said: "There was a chorus of: 'Hrumph, no scientific evidence, hrumph… but if you can afford to have it done properly, then it certainly won't do any harm'."

Speaking at the Alzheimer's Research Trust conference in Bristol, Pratchett will say: "Part of me lives in a world of New Age remedies and science, and some of the science is a little like voodoo.But science was never an exact science and, personally, I'd eat the arse out of a dead mole if it offered a fighting chance."

Pratchett, who has continued to write best-sellers in the two years since he is thought to have first developed the disease, said: "I have a rare variant. Apparently, if you are going to have Alzheimer's it's a good one to have. So, a stroke of luck there then."

The author, who recently published the 36th book in the Discworld series of humorous and satirical fantasy novels, is donating the money to the Alzheimer's Research Trust charity.

'I'd like to die like my father'

SPEAKING about his illness, Terry Pratchett said: "I'd like a chance to die like my father did – of cancer, at 86. Before he went to spend his last two weeks in a hospice he was bustling around the house, fixing things.

"He talked to us right up to the last few days, knowing who we were and who he was. Right now, I envy him. And there are thousands like me, except that they don't get heard."

He described Alzheimer's as "a nasty disease, surrounded by shadows and small, largely unseen tragedies", adding: "People don't know what to say, unless they have had it in the family."

He described reacting to his diagnosis with "a sense of loss and abandonment (and a] violently coherent fury that made the Miltonic Lucifer, raging against Heaven, seem a bit miffed by comparison. That fire still burns. I want to go on writing. Admittedly, that means I have to stay alive. You can't write books when you are dead."