Terry Pratchett: “I am the only person suffering from Pratchett’s posterior cortical atrophy”

Celebrated fantasy writer launches new blog on dementia and science

Posted on 17th September 2013

Sir Terry Pratchett has written a personal reflection on society’s response to dementia and his own experience of Alzheimer’s to launch a new blog for Alzheimer’s Research UK: www.dementiablog.org. In the inaugural article, the writer reflects on fear, funding and “pussy footing” around dementia.

The new dementia blog from Alzheimer’s Research UK will share the ideas and experiences of people living with dementia, scientists working to improve diagnosis, prevention and treatment, and the fundraisers who support the UK’s leading dementia research charity.

Sir Terry became a patron of Alzheimer’s Research UK in 2008, shortly after announcing his diagnosis with posterior cortical atrophy, a rare variant of Alzheimer’s disease affecting vision. He went on to make a personal donation of $1 million to the charity, and has subsequently campaigned for greater research funding, including delivering a major petition to No10 and countless media appearances.

In his inaugural post for the blog, Sir Terry Pratchett writes: “There isn’t one kind of dementia. There aren’t a dozen kinds. There are hundreds of thousands. Each person who lives with one of these diseases will be affected in uniquely destructive ways. I, for one, am the only person suffering from Terry Pratchett’s posterior cortical atrophy which, for some unknown reason, still leaves me able to write – with the help of my computer and friend – bestselling novels.

“There is no clearly plotted pathway to the course of these diseases. Dementia attacks those facets which make us who we are, and it’s a deeply personal attack that defies prediction. And that’s the point. Every person with dementia has a unique story to tell, and …words need to be put down before they run dry… or run out.”

Sir Terry goes on to call for further investment in dementia research: “Technology and a trained and compassionate care system can help paper over the cracks, but, a decade since the last proclaimed development, science needs to deliver on its promises. There’s more money floating around the government for research, but barely enough to buy a middling premier league striker. If we’re serious about this thing, and want to match the fanfare with the funding, then more money needs to be found down the back of David Cameron’s sofa.”

Rebecca Wood, Chief Executive of Alzheimer’s Research UK, said: “Sir Terry has campaigned for dementia research funding for five years, and as he is living with Alzheimer’s himself, he is uniquely well placed to reflect on dementia today. Sir Terry’s point that dementia manifests uniquely for each individual underlines how complex a challenge it poses to those affected, their families and the scientists searching for answers.

“This blog will illuminate the often misunderstood effects of dementia, give a voice to hundreds of thousands who often struggle to be heard, and become the home of expert reaction to scientific developments across the world.”

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