Alzheimer's

Retro News: Pratchett’s fan updates October-December 2008; health “stable”; documentary “looks pretty good”; Unseen Academicals finished by May?

1 January 2009 (15:02) Comment!

Since October, Terry Pratchett has posted three updates on PJSMPrints, all of which contain a wealth of information about his writing progress, the media interest in Terry Pratchett The Alzheimer’s Patient, the documentary Living With Alzheimer’s, and so on.

To quote Pratchett’s October update (scroll down at the link):

At last some progress is being made on Unseen Academicals since we got through the making of the BBC2 documentary and all the alternative calls on my time that seemed to have filled the past year. Today, for example, I have nothing to do but write and Rob and I were just mentioning how odd it is to have a day which does not involve some kind of travel, meeting, or interview. In fact Rob is about to interview me right now:

(more…)

Living With Alzheimer’s to air in February?

1 January 2009 (14:28) Comment!

Despite our previous report that Living With Alzheimer’s would air in January, Sandra Kidby of PJSMPrints announced that the documentary time slot is “almost certainly going to be Wednesday 4th February at 9 p.m., with part two following a week later.”

The documentary consists of two hour-long parts, and follows Terry Pratchett as he learns about the disease and deals with the “embuggerance.”

Living With Alzheimer’s is produced by IWC Media and BBC2, and will air as part of a documentary series about mental health and mental health related issues.

Signed novel raises £760 for Alzheimer’s Society

29 December 2008 (13:30) 1 Comment

Terry Pratchett donated a signed copy of Making Money to an auction for the New Forest branch of the Alzheimer’s Society. The book was auctioned off for £760.

This article quotes Terry Pratchett as saying, “I am, along with many others, scrabbling to stay ahead long enough to be there when the cure comes along…. It is a shock to find out that funding for Alzheimer’s research is just 3% of that to find cancer cures.”

Living With Alzheimer’s to air in January; more information about Alzheimer’s documentary

28 December 2008 (20:15) Comment!

After hearing about the Alzheimer’s documentary (full title Terry Pratchett: Living With Alzheimer’s) off-and-on for almost a year, MedicalNewsToday.com has lots of information as to when the documentary will be aired and what it will contain.

The IWC Media-produced documentary will be aired in January on BBC Two, UK, as part of a documentary series focused on mental health called BBC Headroom.
(more…)

Retro News: Pratchett interview, in which he actually talks about things other than Alzheimer’s (29 November 2008)

28 December 2008 (19:57) Comment!

Deborah Orr at the Independent.co.uk interviewed Terry Pratchett late in November, and in doing so provides some insight into Terry Pratchett’s writing process.

The article gets the requisite Alzheimer’s questions done early. Terry Pratchett summed up the effect of his very public diagnosis:
(more…)

Retro News: Pratchett opens RICE headquarters (05 December)

28 December 2008 (19:15) Comment!

Terry Pratchett helped open the new £2 million headquarters of RICE (the Research Institute For The Care Of Older People, formally the Research Into The Care Of The Elderly) in the Royal United Hospital on December 5th, 2008.

In the ceremony he unveiled a plaque, cut the ribbon and continued his campaign for the public awareness of the need for research into Alzheimer’s.

Pratchett said, of his role in the opening, “I have first hand knowledge of the work of the institute and am delighted to be formally opening the new building in Bath.”
(more…)

Retro News: Pratchett interview (08 November 2008)

28 December 2008 (18:07) Comment!

In a Daily Mail interview titled I’m not beaten yet: Terry Prachett on the frustration and fury of Alzheimer’s, Terry Pratchett shared with the interviewer some more about his attitude towards the “embuggerance” of Alzheimer’s. To quote the article:

Although he calls it a ‘wretched disease’, since disclosing that he has it, he has retained his dark sense of comedy. He began an address to his latest convention of fans by cracking a joke. ‘I said, “Hello my name is…” Then I retrieved a crumpled piece of paper from my pocket and read out my name,’ he recalls.

The audience laughed because Terry, afflicted by an illness that steals both memory and identity, was permitting them to do so.

(more…)

Retro News: Pratchett delivers Alzheimer’s funding petition (26 November 2008)

28 December 2008 (13:04) Comment!

On November 26, 2008, as part of his ongoing Alzheimer’s public awareness campaign, Terry Pratchett delivered a petition to Prime Minister Gordon Brown at Downing Street asking the government to increase funding for Alzheimer’s research. In his speech, Pratchett explains why Alzheimer’s research is so important:

Nearly everybody I have talked to around the country talks about caring for their mother or father with the disease, so it seems there is not a family in the land that hasn’t been affected, yet it is like a huge secret everybody shares.

Because Alzheimer’s affects the brain we have some real difficulties about it.

(more…)

Retro News: Pratchett on BBC Breakfast and Channel 4 News (07 October 2008)

24 December 2008 (16:32) Comment!

Terry Pratchett appeared on BBC Breakfast around the time of his highly publicized essay in the Daily Mail, talking about the stigma surrounding Alzheimer’s in the U.K. today. Pratchett started off the interview in high form, answering the initial “How are you?” with “Fine … hah, you know, apart from the dementia.” Click through for more on his experience with Alzheimer’s.

He also appeared briefly on Channel 4 News as part of his series media appearances. You can watch the news report here. (Terry Pratchett appears about a minute in.)

Retro News: Pratchett letter to The Times on Alzheimer’s (07 October 2008)

20 December 2008 (15:17) Comment!

In a letter to the Times in early October, Terry Pratchett reiterates his statements on the need for public recognition of Alzheimer’s. He writes:

Today, the Alzheimer’s Society publishes a new report, ‘Dementia: out of the shadows’…. I am calling for an end to the stigma and misunderstanding that surround this embuggerance of a condition….

New research shows that half of UK adults believe dementia is a condition plagued by stigma….

That’s why I’m calling for urgent investment in public awareness campaigns on dementia….

If we bring dementia out of the shadows, we can kill it.

Dementia: Out Of The Shadows can be found at the Alzheimer’s Society website.

Retro News: Pratchett says, “I felt totally alone, with the world receding from me in every direction” when he was diagnosed with Alzheimer’s (07 Oct. 2008)

19 December 2008 (15:24) Comment!

As part of the launch of a new study in the stigma associated with Alzheimer’s, Out Of The Shadows, Terry Pratchett wrote an essay describing his experiences with Alzheimer’s published by the Daily Mail:

Seven hundred thousand people who have dementia in this country are not heard. I’m fortunate; I can be heard. Regrettably, it’s amazing how people listen if you stand up in public and give away $1million for research into the disease, as I have done.

Why did I do it? I regarded finding I had a form of Alzheimer’s as an insult and decided to do my best to marshal any kind of forces I could against this wretched disease.

I have posterior cortical atrophy or PCA. They say, rather ingenuously, that if you have Alzheimer’s it’s the best form of Alzheimer’s to have. This is a moot point, but what it does do, while gradually robbing you of memory, visual acuity and other things you didn’t know you had until you miss them, is leave you more or less as fluent and coherent as you always have been.

I spoke to a fellow sufferer recently (or as I prefer to say, ‘a person who is thoroughly annoyed with the fact they have dementia’) who talked in the tones of a university lecturer and in every respect was quite capable of taking part in an animated conversation.

Nevertheless, he could not see the teacup in front of him. His eyes knew that the cup was there; his brain was not passing along the information. This disease slips you away a little bit at a time and lets you watch it happen.

When I look back now, I suspect there may be some truth in the speculation that dementia (of which Alzheimer’s is the most common form) may be present in the body for quite some time before it can be diagnosed.

For me, things came to a head in the late summer of 2007. My typing had been getting progressively worse and my spelling had become erratic. I grew to recognise what I came to call Clapham Junction days when the demands of the office grew too much to deal with.

I was initially diagnosed not with Alzheimer’s but with an ischemic change, a simple loss of brain cells due to normal ageing. That satisfied me until the next Clapham Junction day. I went back to my GP and said I knew there was something more going on.

Fortunately, she knew well enough not to bother with the frankly pathetic MMSE test (the 30-point questionnaire used to determine brain function) and sent me to Addenbrooke’s Hospital in Cambridge, where, after examination of my MRI scan and an afternoon of complex tests, I was diagnosed with PCA, an uncommon variant of dementia, which had escaped the eagle eye of the original diagnostician.

When in Paradise Lost Milton’s Satan stood in the pit of hell and raged at heaven, he was merely a trifle miffed compared to how I felt that day. I felt totally alone, with the world receding from me in every direction and you could have used my anger to weld steel.

Only my family and the fact I had fans in the medical profession, who gave me useful advice, got me through that moment. I feel very sorry for, and angry on behalf of, the people who don’t have the easy ride I had.

It is astonishing how long it takes some people to get diagnosed (I know because they write to me). I cannot help but wonder if this is because doctors are sometimes reluctant to give the patient the stigma of dementia since there is no cure.

I was extremely fortunate in my GP. I think she was amazed to find that of the two specialists in my area, one had no experience of PCA and therefore did not feel he could help me and the other would only take on patients over 65 - at 59 I was clearly too young to have Alzheimer’s.

I remember on that day of rage thinking that if I’d been diagnosed with cancer of any kind, at least there would have opened in front of me a trodden path.

There would have been specialists, examinations, there would be in short, some machinery in place.

I was not in the mood for a response that said, more or less, ‘go away and come back in six years’.

My wife said: ‘Thank goodness it isn’t a brain tumour,’ but all I could think then was: ‘I know three people who have got better after a brain tumour. I haven’t heard of anyone who’s got better from Alzheimer’s.’

It was my typing and spelling that convinced me the diagnosis was right. They had gone haywire. Other problems I put down to my looming 60th birthday.

I thought no one else had noticed the fumbling with seat belts and the several attempts to get clothing on properly, but my wife and PA were worrying. We still have the occasional Clapham Junction days, now understood and dealt with.

I have written 47 novels in the past 25 years, but now I have to check the spelling of even quite simple words - they just blank on me at random.

I would not dare to write this without the once despised checker, and you would have your work cut out to read it, believe me. On the other hand - and this is very typical of PCA - when the kind lady who periodically checks me out asked me to name as many animals as I can, I started with the rock hyrax, the nearest living relative to the elephant, and thylacine - the probably extinct Tasmanian marsupial wolf.

That’s the gift or the curse of our little variant. We have problems handling the physical world but can come pretty close to talking our way out of it so you don’t notice. We might have our shirts done up wrong, but might be able to convince you it’s a new style.

I felt that all I had was a voice, and I should make it heard. It never occurred to me not to use it. I went on the net and told, well, everyone. I wish I could say it was an act of bravery. It wasn’t and I find that suggestion very nearly obscene.

How brave is it to say you have a disease that does not hint of a dissolute youth, riotous living or even terrible eating habits? Anyone can contract dementia; and every day and with a growing momentum, anybody does.

It occurred to me that at one point it was like I had two diseases - one was Alzheimer’s and the other was knowing I had Alzheimer’s.

There were times when I thought I’d have been much happier not knowing, just accepting that I’d lost brain cells and one day they’d probably grow back or whatever.

It is better to know, though, and better for it to be known, because it has got people talking, which I rather think was what I had in mind. The $1million I pledged to the Alzheimer’s Research Trust was just to make them talk louder for a while.

It is a strange life when you ‘come out’. People get embarrassed, lower their voices, get lost for words. Part of the report I’m helping to launch today reveals that 50 per cent of Britons think there is a stigma surrounding dementia. Only 25 per cent think there is still a stigma associated with cancer.

The stories in the report - of people being told they were too young or intelligent to have dementia; of neighbours crossing the street and friends abandoning them - are like something from a horror novel.

It seems that when you have cancer you are a brave battler against the disease, but when you have Alzheimer’s you are an old fart. That’s how people see you. It makes you feel quite alone.

It seems to me there’s hardly one family in this country that is not touched by the disease somehow. But people don’t talk about it because it is so frightening. I swear that people think that if they say the word they’re summoning the demon. It used to be the same with cancer.

Journalists, on the other hand - I appreciate that other people living with the disease don’t get so much of this - find it hard to talk to me about anything else, and it dominates every interview: Yes, I said I had PCA ten months ago, yes, I still have it, yes, I wish I didn’t, no, there is no cure.

I can’t really object to all this, but it is strange that a disease that attracts so much attention, awe, fear and superstition is so underfunded in treatment and research.

We don’t know what causes it, and as far as we know the only way to be sure of not developing it is to die young.

Regular exercise and eating sensibly are a good idea, but they don’t come with any guarantees. There is no cure.

Researchers are talking about the possibility of a whole palette of treatments or regimes to help those people with dementia to live active and satisfying lives, with the disease kept in reasonably permanent check in very much the same way as treatments now exist for HIV.

Not so much a cure therefore as - we hope - a permanent reprieve. We hope it will come quickly, and be affordable.

In the meantime we hope for Aricept, which is not a cure but acts as a line of sandbags against the rising tide of unknowing. However, it is available free only to those in the moderate stages of the disease: others must pay £1,000 a year, which I do.

Eligibility is determined by the MMSE questionnaire test, and it would be so easy for a patient in the mild stage to cheat their score into the free zone that I take my hat off to
those too proud or responsible to do so. I cough up.

NICE says the change it makes at my stage is minimal, but we don’t think so in our house, where those little changes make the difference between a dull day and a fine day.

The disease is, after all, about small changes, and it may be that individuals may indeed be individual.

And that is nearly it for hope at the moment. When my father was in his terminal year, I discussed death with him.

I recall very clearly his relief that the cancer that was taking him was at least allowing him ‘all his marbles’. Dementia in its varied forms is not like cancer.

Dad saw the cancer in his pancreas as an invader. But Alzheimer’s is me unwinding, losing trust in myself, a butt of my own jokes and on bad days capable of playing hunt the slipper by myself and losing.

You can’t battle it, you can’t be a plucky ‘survivor’. It just steals you from yourself.

And I’m 60; that’s supposed to be the new 40. The baby boomers are getting older, and will stay older for longer.

And they will run right into the dementia firing range. How will a society cope?

Especially a society that can’t so readily rely on those stable family relationships that traditionally provided the backbone of care?

What is needed is will and determination. The first step is to talk openly about dementia because it’s a fact, well enshrined in folklore, that if we are to kill the demon then first we have to say its name.

Once we have recognised the demon, without secrecy or shame, we can find its weaknesses.

Regrettably one of the best swords for killing demons like this is made of gold - lots of gold.

These days we call it funding. I believe the D-day battle on Alzheimer’s will be engaged shortly and a lot of things I’ve heard from experts, not always formally, strengthen that belief.

It’s a physical disease, not some mystic curse; therefore it will fall to a physical cure. There’s time to kill the demon before it grows.

The Alzheimer’s Society provides some video interviews with Terry Pratchett on their website.

Pratchett announced his diagnosis December of last year.

Retro News: Pratchett interview post-Alzheimer’s diagnosis, pre-Colour Of Magic airing (18 March 2008)

16 December 2008 (0:08) Comment!

An old interview from the Guardian provides some insight into Pratchett’s attitude towards Alzheimer’s three months after announcing the diagnosis. He says, “I’m nearly 60 and I’ve never been nearly 60 before so I’m not sure if some of the things happening to me are Alzheimer’s or getting older. Nor is anyone else. If I say, ‘I keep losing my keys,’ someone will say, ‘That’s me!’ And, again, sometimes, I do find days really hard. If you have a really complex day with lots of fans ringing up or emailing, lots of meetings, by the end of it I just want to go and sit down quietly. But that in itself is not an Alzheimer’s thing. Everyone feels like that after a difficult day.”

To explain his decision to campaign for Alzheimer’s awareness, Pratchett said, “If you’re in a plane that’s crashing and you’re on the phone, what you do is keep talking all the way down.”

He also shared this poignant story from his days as a young reporter:

When I was a young reporter covering, as one did, the police stations on New Year’s Day, there was a story about a minibus and a car colliding. Six kids had been killed. I thought: ‘This is a great story. It’s going on page one.’ Then I got back to the office and the other trainee reporter was explaining why he was late, how he had had to console his mother because his sister hadn’t come back home.

So I looked at the names in my notebook, and her name - which wasn’t very common - was there. I ringed the name and handed my notebook to the news editor and went to the toilet. I went into a cubicle and locked the door. And then I laughed…. I laughed, but I wanted to scream. There was a lot of that sort of thing, and ultimately I didn’t want to do it.

Retro News: Pratchett signing at the smallest bookshop in the U.K. (13 Sept. 2008)

14 December 2008 (17:10) Comment!

As part of the book launch for Terry Pratchett’s latest book, Nation, Pratchett signed books at a bookstore chosen for it’s diminutive size (it has only three square meters of floor space).

HaylingToday.co.uk reports that hundreds lined up for the signing, one of very few public appearances Pratchett is making in the U.K. this year. A live parrot helped set the theme based on the book.

Retro News: Pratchett on Washington Post chat (01 Oct. 2008)

13 December 2008 (17:30) Comment!

Terry Pratchett chatted with Washington Post readers on Wednesday, Oct. 1st on Book World Live for a discussion about his most recent children’s book, Nation. To quote the full transcript:

Terry Pratchett: Hello, it’s Terry Pratchett, here to talk about my book Nation, and anything else. Except cookery, or mathematics. I’d like to start by thanking the Washington Post for the wonderful review in Book World. It’s nice when people spot the little twiddly bits. I was pleased to see that. The reviews have been very encouraging around the globe.

Houston, TX : How did you get the idea for Nation?

Terry Pratchett: I wish I knew, because if I did I would go back to the same place with a bucket. The initial idea and the image of Mau standing on the beach defying his gods came to me instantly, late in 2003, and it hung around for a long time…. what I originally had in mind was something like the explosion of Krakatoa, and the shipwreck of the Sweet Judy is very loosely based on a real event that happened after the volcano exploded.

Woodbridge, Va.: The Washington Post review of your book says that it deals with “fundamental questions about religious belief.” Are you a man of faith?

Terry Pratchett: Certainly I have no faith in Jehovah, although I think it quite likely that Jesus Christ, as a preacher and a wise man, did indeed exist. I think possibly the ending of Nation pretty much outlines what I think. Indeed, the whole of Nation outlines what I think, which is that if you do your best for your fellow man, then the issue of the gods is somewhat superfluous.

Falls Church, Va: … I have two questions: What is your favorite Discworld Book? More importantly, how young an adult is your “Young Adult Novel” appropriate for? My 12 year old son is a decent reader for a 7th grader. Do you think the book would be appropriate for him?

Terry Pratchett: I would say that I have done my best writing in the Tiffany Aching series, which are technically Discworld books, although they are meant for children.

Among the adult books, Nightwatch [sic] must be my favourite.

The question of age and suitability is a hot one here in the UK, where authors are banding together to stop publishers’ age-banding children’s/YA books. That is to say, they want to include advice like “suitable for a child of 7 1/2″ on the cover of the book. The reason this is a very hit-and-miss message is that it all depends on the child. I think I had read all the James Bond books that were available by the time I was 12, and you have to remember that a book like Pilgrim’s Progress was once considered a perfect Sunday afternoon for children of 7 or so. If a kid is bright and questioning, and really interested in the world, they will find a lot for them in Nation. Equally, I imagine there’s one or 2 adults that won’t get it!

Gaithersburg, MD: How are you feeling?

Terry Pratchett: I’m feeling good.

I think I feel a question that no one is quite asking here.

Yes, I have PCA, which is a rare variant of Alzheimer’s. Right now, its main effect on me is to mess up my typing skills, and also to make my spelling inaccurate — I mean to the point where I might actually fail to remember how to spell a simple 5-letter word just as I am about to type it. these [sic] things are a nuisance, and certainly slow down my work rate. But to some extent, technology can help. There is no cure. PCA is a strange thing, and no one is taking any guesses about how long I shall be able to keep working like this. My personal view is that the sheer grind of writing will get me down long before there’s still plenty of room for me to enjoy things in life. Oddly enough, the ability to plot and invent dialogue and characters seems to be totally untouched. It is worth pointing out that Nation, in its entirety, was written by a guy with PCA. I did not know that I had it until the late fall of last year, but throughout that year I had been putting down the problems of typing, etc. to other things, senior moments and just general aging. To put it bluntly, you would have to know me very well, and possibly even be familiar with PCA, to suspect that I was anything other than an average 60-year old guy.

Wallace, N.C: You once wrote a short story about a female King Arthur (Queen Ursula) and Mervin (a geeky Merlin). Have you ever thought about returning to that particular story and finding out how the Table is different? (Speaking as a huge female fan of Arthurian legend, I have always wondered what would happen after Ursula pulled the sword out of the stone! She was a very impressive character.)

Terry Pratchett: Thank you! I was very pleased with that short story and had planned, which circumstances are likely to derail, to extend it into a novel. Since Merlin was a time traveller, I did wonder if we would end up with something like an Elizabethan age several centuries ahead of its time. There are so many ways it could have gone. Nevertheless, it was quite good fun doing it as a straight short story, just to introduce the idea.

Washington, D.C.: You hail from the nation that built a global colonial empire, but also wrote the Magna Carta and fought both Napoleon and Hitler. One theme that seems to run through many of your novels is the conception that good is relative but evil is the absolute inability to care about other living things, be they golems, people, or cats. Are there any specific religious beliefs, philosophical texts, or life events that shaped this conviction?

Terry Pratchett: See my earlier answer about being a reader. It was SF and fantasy that got me reading, and SF writers in particular have pack rat minds. They introduce all sorts of interesting themes and ideas into their books, and so for me it was a short leap to go from the F and SF genres to folklore, mythology, ancient history and philosophy. I did not read philosophy because I set out to become a philosopher; I read it because it looked interesting. All I am really promoting in the books is the Golden Rule, which I hope everybody knows to be “do as you would be done by.” It has one or 2 flaws, but it is a good soundbite. Evil starts when you treat other people as things. There are perhaps worse crimes, but they begin when you treat other people as things.

Manchester, UK: When I had the pleasure of meeting you at the DWCON in Birmingham this year, you said you were a little unsure of the book on the whole - you weren’t sure whether to tweak it somewhat, etc, and what the reaction from your fans was going to be with it being so completely unlike anything you’ve done before. After Nation was released and became a top seller (again!) and the reviews have been wonderful - Do you feel any differently towards it now?

Terry Pratchett: … Somebody once said that books are not finished, they just escape. I probably spent five months doing the final rewrites and edits of Nation. It was so long because I tend to be very “big brush” on the early drafts. I look at it now and see places where I could have improved it, but in reality, I would probably have had to put in 100% more work for 1% improvement.

Philadelphia, Pa.: Do you have a writing process? About how long do you think about your storyline before you put it down on paper? How much of writing is rewriting?

Terry Pratchett: Good one. Nation was written in a very strange way. I was doing draft 5 of the first few chapters when I was on draft 1 of the ending. In a sense, it was written in a way more suitable to painting; in effect I was working on the whole thing all the time.

Generally I start writing when I have even the smallest idea of how a book is going to go, because the physical process of writing itself keeps the mind active and focused on the job at hand. Usually I write in about 5 drafts, but that simply means there are 5 definite times when I go in a linear fashion from the beginning to the end of the book.

Terry Pratchett also talked about his Alzheimer’s and a book he is currently working on, which he says is set on the Discworld and follows an almost completely new suite of characters.

Terry Pratchett speaks out about Alzheimer’s at Tory party conference

14 October 2008 (12:56) 2 Comments

Terry Pratchett spoke at the September 29th Tory party conference, opening up about his experience with Alzheimer’s and explaining why the U.K. needs to increase its funding for Alzheimer’s research, concluding his speech to a standing ovation.

The non-conservative Pratchett slowed several times during the speech, saying the disease was “making the letters dance.” He compared Alzheimer’s to a “slow motion car crash.”

“Always, at the back of your mind, [is] the thought that sooner or later you’ll go through the windscreen,” Pratchett said.

He continued his ongoing comparison of Alzheimer’s to cancer, saying that while cancer is no longer a taboo subject, Alzheimer’s is still “stuck in a medieval fog of superstition, misunderstanding, and silence.”

The U.K. faces one million of Alzheimer’s sufferers by 2025, he told the audience, saying “I am just a little wave ahead of the rest. Technically, I have early onset, but growing older behind me are the baby-boomers.”

“We are facing a tsunami,” which will put too much strain the NHS and carers, with effects on the society as a whole, he said.

The cost of care for “a large population of helpless elderly” may be in the billions of pounds if something isn’t done soon, as Pratchett said, “what is unthinkable is to do nothing at all.”

Pratchett asked for more funding for research, saying healthcare and technology must advance if the nation is to deal with the problem. In addition, he said, he wants Alzheimer’s “to be dragged into the light and stay there and seen for what it is–a random disease and no cause for shame.”

He asked the audience, “Is there going to be a government of any stripe willing to put its money where its mouth is … or will dementia remain the most feard disease of the over-55s?”

1. AFP, Sept. 29, 2008.
2. The Press Association, Sept. 29, 2008.

Update: The full text of his speech can be found on PJSMPrints.

Pratchett to address Conservative Party tonight

29 September 2008 (14:42) Comment!

Terry Pratchett will be appearing at the Conservative Party Conference tonight in his continuing campaign for increased funding for Alzheimer’s research, saying it is under-funded compared to other diseases.

“I am appalled that research into Alzheimer’s and related diseases which affects 700,000 people in the UK, currently receives just three per cent of government medical research funding,” he plans to say in his speech tonight. “Perhaps that is why, for example, I know three people who have successfully survived brain tumours but no-one who has beaten Alzheimer’s.”

Pratchett donated £500,000 earlier in 2008 to the Alzheimer’s Research Trust, for which Rebecca Wood is the Chief Executive.

“Dementia costs the UK economy £17 billion a year …” Wood said. “Politicians from all parties must recognise that the only socially just and financially prudent policy is to vastly increase funding for dementia research.”

The U.K. government spent £25 million on Alzheimer’s in the 2005-2006 period, an amount which a Department of Health spokesperson called “significant Government funding.”

Pratchett interview on Nation

14 September 2008 (22:11) Comment!

Publishers Weekly interviewed Terry Pratchett recently (slight spoilers at the link) about Nation, calling it “more somber,” to which Pratchett responds, “It’s important for the hero to have tragic relief, the opposite of light relief. Let’s not forget that at the very beginning, the young hero has to bury everyone he’s known in his life and spends quite a lot of the book teetering on the edge of insanity. The book deals with issues that can’t be handled lightly.”

The interview takes a bit of a detour, of course, into Alzheimer’s.  Pratchett points out that “Alzheimer’s made a mistake, because it hit me with a variant that leaves me still more than capable of thinking and writing and speaking, and a lot of my time now is taken up with publicity for Alzheimer’s funding.”

He also talks a bit about kid’s reading, saying, “when I was a kid I read books well ahead of what my parents thought I read. It’s a wise child that doesn’t always let their parents know what they’re reading. I picked up quite an extensive vocabulary from reading although I must confess that for years I thought the word ‘ogre’ was pronounced ‘ogrey.’ I’d never actually heard it spoken, but I’d read it hundreds of times.”

Most intriguing of all, to those who haven’t yet read Nation Pratchett’s answer to whether or not Nation is “magical”: “That depends.”

Nation came out Sept. 11 in the U.K. and Sept. 30 in the U.S. (it is now available for preorder).

Pratchett writes on Alzheimer’s drug Aricept

17 August 2008 (15:02) Comment!

The full text Terry Pratchett’s article, which begins with “The NHS is seriously injured,” and was found on page six of today’s News of the World, can be found on the website today.  In it, Pratchett complains that the NHS in Britain is not doing it’s job:

A drug called Aricept can slow the progress of the disease, and the good news is it costs just £2.50 a day.

The bad news is there are 400,000 Alzheimer’s sufferers in the U.K. so Aricept has been ruled out for NHS use in the mild stages of the disease everywhere except Scotland…. I’m a millionaire so I have no trouble paying, but there are people who can’t…. I would very much like to know the basis on which these decisions are made because some of them don’t seem to make very much sense. It is interesting to note I could get Viagra for free. I’m not too certain it’s the State’s job to provide Viagra.

He also points out that the NHS is not equipped to handle the upcoming wave of aging baby boomers.
Other interesting tidbits:

My wife and PA both noticed real changes in me after two or three months on it. I used to fumble with buttons and needed help with seatbelts. Now, I get dressed normally and seatbelts slide in first time. Mentally, it’s the difference between a sunny day and an overcast day. Ye Gods, that’s worth it!

—————

 I can still work at home and control my environment, and my rare variant of the disease is not yet a real burden. The novels turn up as they always have — only the typing is hard. There will now be a moment when the letter A, say, vanishes. It’s as if the keyboard closes up and the letter A is not there anymore. Then I’ll blink a few times and concentrate and it comes back.

I’ve handed in my driving licence — if my brain won’t let me see that A, it might not let me see the child on the pedestrian crossing. Unlikely, at this stage, but who would risk it?

—————–

And I can afford a voice recognition programme for the computer. There’s no way I’m going to retire, I’ll be writing until I die. It’s my passion.  I stood up and said I had Alzheimer’s. I didn’t expect all the fuss, or my mailbox to melt. Good grief, you write best sellers for 25 years in a kind of welcome obscurity, then you catch one lousy disease and every chat show wants to talk to you.

Also, catch Pratchett tomorrow on a special Panorama program called The NHS Postcode: It Could Be You Monday at 8:30 p.m.