That is so sad, especially given his gift with words. Thinking of you, Terry.
When author Terry Pratchett was diagnosed with dementia, he was shocked to discover doctors could do little to help. For despite the fact that the condition affects more than 700,000 Britons (a million by 2025), research into its causes and treatment has been chronically under-funded.
Patients and their families also have to cope with the stigma and ignorance surrounding dementia, as a report published today by the Alzheimerís Society has revealed. In the belief that the only way to change this is to talk openly about the disease, here Terry Pratchett describes his own experiences.
Seven hundred thousand people who have dementia in this country are not heard. Iím fortunate; I can be heard. Regrettably, itís 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 Alzheimerís 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 Alzheimerís itís the best form of Alzheimerís to have. This is a moot point, but what it does do, while gradually robbing you of memory, visual acuity and other things you didnít know you had until you miss them, is leave you more or less as fluent and coherent as you always have been.
Incurable: Terry Pratchett revealed on 11 December last year that he had been diagnosed with early onset Alzheimer's disease
I spoke to a fellow sufferer recently (or as I prefer to say, Ďa person who is thoroughly annoyed with the fact they have dementiaí) 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 Alzheimerís 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 Alzheimerís 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 Miltonís 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 donít 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 Alzheimerís.
I remember on that day of rage thinking that if Iíd 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, Ďgo away and come back in six yearsí.
My wife said: ĎThank goodness it isnít a brain tumour,í but all I could think then was: ĎI know three people who have got better after a brain tumour. I havenít heard of anyone whoís got better from Alzheimerís.í
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.
Grand memories: Terry Pratchett shows the OBE he received from the Prince of Wales on behalf of The Queen in 1998
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.
Thatís 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 donít notice. We might have our shirts done up wrong, but might be able to convince you itís 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 wasnít 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.
Disease of knowledge
It occurred to me that at one point it was like I had two diseases - one was Alzheimerís and the other was knowing I had Alzheimerís.
There were times when I thought Iíd have been much happier not knowing, just accepting that Iíd lost brain cells and one day theyíd 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 Alzheimerís Research Trust was just to make them talk louder for a while.
Success: Pratchett made his name with his well-loved Discworld novels
It is a strange life when you Ďcome outí. People get embarrassed, lower their voices, get lost for words. Part of the report Iím 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 Alzheimerís you are an old fart. Thatís how people see you. It makes you feel quite alone.
It seems to me thereís hardly one family in this country that is not touched by the disease somehow. But people donít talk about it because it is so frightening. I swear that people think that if they say the word theyíre 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 donít 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 didnít, no, there is no cure.
'When you have cancer you are a brave battler against the disease, but when you have Alzheimerís you are an old fart'--------------------------------------------------------------------------------------------------------------------
I canít 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 donít 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 donít 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 donít 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 Ďall his marblesí. Dementia in its varied forms is not like cancer.
Dad saw the cancer in his pancreas as an invader. But Alzheimerís 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 canít battle it, you canít be a plucky Ďsurvivorí. It just steals you from yourself.
And Iím 60; thatís 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 canít 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 itís 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 Alzheimerís will be engaged shortly and a lot of things Iíve heard from experts, not always formally, strengthen that belief.
Itís a physical disease, not some mystic curse; therefore it will fall to a physical cure. Thereís time to kill the demon before it grows.
ē To see the full report, Dementia: Out Of The Shadows go to www.alzheimers.org.uk Alzheimerís Society dementia helpline: 0845 300 0336. Alzheimerís Research Trust Alzheimer's Research Trust - The leading UK research charity for dementia
Terry Pratchett: I'm slipping away a bit at a time... and all I can do is watch it happen | Mail Online
That is so sad, especially given his gift with words. Thinking of you, Terry.
this is so terrible, that he has to even know what he's going through. i wish him well.
Well, the whore apples sure didn't fall far from the whore tree. Sylkyn
I seldom get emotional over people I don't know, but reading this just fills me with profound sadness.
"Remember to always be yourself. Unless you suck." - Joss Whedon
"The only thing more expensive than education is ignorance." -Benjamin Franklin
This is fucking heart breaking; I think about it everytime I see the spine of Good Omens on my shelf.
KILLING ME WON'T BRING BACK YOUR GOD DAMNED HONEY!!!!!!!!!!
Come on, let's have lots of drinks.
It must be so heartbreaking for the family to see him suffer through this let alone him struggling to maintain his sense of self.
Why did this have to happen to him? So talented and smart, it's so unfair. This breaks my heart.
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