Ben Hoyle, Arts Reporter
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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”.
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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A cancer 'breaktrhough' has been imminent for the last 40 years. How about we become realistic and apportion research funds to areas where a breaktrhough is actually possible?
David, Gatley, UK
I think this article raises a very serious funding issue - many people are increasingly aware of the great pain Alzheimer's/dementia causes all through a family - and we should pressure politicians and other funding decision makers in this direction.
Funding such research by reducing cancer research is an argument I would be interested hearing pursued, and which I would be minded to support.
Great article.
John Campbell, London,
Discworld is the only place I can go for any real fun and you don't
have to be in total control of your sensibilities to function
there at a very high level.
My Dad takes Aricept as well, and he's the life of the
senior apartment complex -- he tells the senior ladies
he can levitate his walker and invites them to fly away
with him, and he has a fine grasp of the absurdity of
American politics; just can't find his shoes.
Tell Terry we Americans love him to bits and he must
carry on.
Norma Zelenko, Traverse City, Michigan/USA
Terry, greetings from the land of mists and magic, you are my hero. Please keep on writing.
How sad that Mr. Bromsgrove can think of nothing better than scoring political points over this news.
TLacy, Welshpool, POWYS
Alzheimers is truly awful. My father has it and has become a shodow of his former self.
He still has enough awarenes to suffer daily from its impact.
All the medics can do is drug him up to stop his fear, aggression and sorrow.
My mother suffers every day and cannot lead any kind of life. We spend as much time with them as we can but nothing we do can make any impact on my fathers health.
What a way to go into the final years of your life!
But, as we already know, Labour regard elderly people as less likely to vote for them and as such less deserving of care.
Far better to spend it on aslylum seekers, ethnic communities and gay/lesbian groups. They are the future. They all vote Labour.
Geoff M, Bromsgrove, England