Best selling British author Terry Pratchett OBE, has promised to give 1 million dollars (half a million pounds) to the Alzheimer’s Research Trust, one of the UK’s leading charities. Pratchett, who is 60 next month, was diagnosed with Alzheimer’s last December, and hopes the money will help to find a cure for the disease.
The world famous author, who writes fantasy, science fiction and children’s books, and is best known for his Discworld series of comic fantasy novels, made the announcement yesterday, Thursday 13th March, at the charity’s 9th Annual Conference in Bristol, where he addressed an audience of 200 of the UK’s leading dementia researchers.
Pratchett described how frustrated he felt when he found out he had a rare form of Alzheimer’s that strikes relatively early in life. In his inimitable way, he used rich comical metaphors to express the lengths he was prepared to go to in order to beat the disease:
“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,” said Pratchett to the conference.
He said he was shocked when he discovered that funding for Alzheimer’s research is only 3 per cent of that spent on cancer research. And yet, he explained, there are nearly as many Alzheimer’s sufferers as people with cancer, and the number is set to double within the next generation, he added.
For every person in the UK with Alzheimer’s, 11 pounds is spent every year on research, and yet for every person with cancer, the figure is 289 pounds spent on research, according to the Alzheimer’s Research Trust press statement.
The Trust’s Chief Executive, Rebecca Wood, said:
“Whilst we were deeply saddened to learn of Mr Pratchett’s diagnosis, we are delighted that he has chosen to speak out about his experiences with Alzheimer’s disease, to raise awareness about its impact and the desperate need for more research.”
She said that research was the only hope of beating the disease and helping people like Terry keep their thinking skills and ability to do the things they love.
“Terry’s generous donation will fund promising UK research which hopes to find ways to slow down or halt the disease,” said Wood.
She said that the Trust has to turn down two out of every three research projects because “we are scraping for every penny”.
Pratchett has a rare form of Alzheimer’s called “posterior cortical atrophy”, where the back part of the brain gradually shrivels and dies off.
He told BBC News that he has started to notice the signs. He’s given up his driving licence because he doesn’t feel confident driving and he said it was curious that he was able to continue writing but not typing.
In his conference speech Pratchett said he felt like kicking a politician because he is too young to get the medication Aricept for free from the NHS. Because he is under 65 he has to buy it himself, he said.
Pratchett was not so unrealistic as to believe that his donation will guarantee to find a cure in his lifetime, but he, like many others, will be “scrabbling to stay ahead long enough” he said.
But, he said he would “scream and harangue” while he still had time, in order to draw people’s attention to dementia and the need for more research.
In his closing remarks, Pratchett described rather poignantly how he wanted a chance to die like his father did, of cancer at the age of 86. He reminded the audience that he was speaking as a person with Alzheimer’s “which strips away your living self a bit at a time”, whereas in his father’s case, before he went to the hospice, two weeks before he died, 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”, Pratchett said, “and there are thousands like me, except that they don’t get heard.”
“So let’s shout something loud enough to hear,” he said, “we need you and you need money. I’m giving you a million dollars. Spend it wisely,” he urged.
Early onset dementia affects people under the age of 65. In the UK alone there are 15,000 people with this form of the disease.
Click here to read all of Terry Pratchett’s speech (PDF).
Click here to for Alzheimer’s Research Trust.
Sources: Alzheimer’s Research Trust press statement, BBC News.
Written by: Catharine Paddock, PhD