Terry Pratchett, the bestselling fantasy author, has donated a million dollars to help to find a cure for Alzheimer’s.

He was found to have the disease three months ago and in a speech to be delivered at a charity conference in Bristol today, he is to announce his desire to “kick a politician in the teeth” over the patchy provision for sufferers and lack of investment in research.

He also talks movingly of how Alzheimer’s “strips away your living self a bit at a time”, depicting it as “a nasty disease, surrounded by shadows and small, largely unseen tragedies”. He said: “People don’t know what to say unless they’ve had it in the family.”

Alzheimer’s is an incurable brain disease that affects 400,000 people in the UK. Pratchett, 59, is one of the country’s most popular authors, best known for his satirical Discworld novels. When he revealed that he was suffering from early onset Alzheimer’s last year, he dealt with it in characteristically breezy style, calling it “an embuggerance”, emphasising that “I am not dead”. He received 60,000 messages of support within the first few hours of the news posted on his website. Privately he reacted with “a sense of loss and abandonment”.

Sod the Booker, this is popular

Giles Hattersley, of The Sunday Times, meets Terry Pratchett

BACKGROUND

• James Jackson meets Terry Pratchett on the set of Hogfather

• The Times review: Making Money by Terry Pratchett

• The Sunday Times review: Making Money by Terry Pratchett

• Imaginary worlds from Pullman to Pratchett

Related Internet Links

• Terry Pratchett explains why he became a writer

• Pratchett video interview: part 1 (footage courtesy of the BBC)

• Pratchett video interview: part 2 (footage courtesy of the BBC)

Related Links

• Illness that sent Iris tumbling into silence

• Terry Pratchett: I have Alzheimer’s

The longer he has lived with it, the more angry he has become about the lack of support for patients, with £11 spent for each person on research every year, compared with £289 for each cancer patient. “There’s nearly as many of us as there are cancer sufferers, and it looks as if the number of people with the disease will double within a generation . . . It’s a shock and a shame, then, to find out that money for research is 3 per cent of that which goes to find cancer cures.

“I’d like a chance to die like my father did — of cancer, at 86. 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.”

In contrast to the “war” against cancer, the shortage of specialists leaves “those of us with early onset in particular, [fighting] 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 [the 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 takes “more supplements than the Sunday papers”, and compares remedies with a network of online advisers that includes university researchers and a witch. “It’s a good idea to cover all the angles.” Pratchett will tell the Alzheimer’s Research Trust conference: “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 recently published the 36th Discworld novel and has a message of reassurance for his fans: “I want to go on writing! Admittedly, that means I have to stay alive. You can’t write books when you are dead, unless your name is L. Ron Hubbard [the founder of Scientology].”

A writer wronged

“ It’s a shock and a shame to find out that money for [Alzheimer’s] research is 3 per cent of that which goes to find cancer cures. Perhaps that is why, for example, I know three people who have successfully survived brain tumours but no one who has beaten Alzheimer’s.”

“ 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.”

“ 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.”

“ Personally, I’d eat the arse out of a dead mole if it offered a fighting chance.”

“ I want to go on writing. You can’t write books when you are dead, unless your name is L. Ron Hubbard.”

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