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Terry Pratchett's Alzheimer's Speech in Full
this is bristol.co.uk ^ | March 13, 2008 | Terry Pratchett

Posted on 03/16/2008 11:56:20 PM PDT by Hetty_Fauxvert

My name is Terry Pratchett, author of a series of inexplicably successful fantasy books and I have had Alzheimer's now for the past two years plus, in which time I managed to write a couple of bestsellers.

I have a rare variant. I don't understand very much about it, but apparently if you are going to have Alzheimer's it's a good one to have.

So, a stroke of luck there then!

Interestingly enough, when I was diagnosed last December by those nice people at Addenbrooke's, I started a very different journey through dementia.

This one had much better scenery, interesting and often very attractive inhabitants, wonderful wildlife and many opportunities for excitement and adventure.

Those of you who's last experience with computer games was looking at Lara Croft's buttocks might not be aware of how good they have become as audio and visual experiences, although I would concede that Lara's buttocks were a visual experience in their own right.

But in this case I was travelling through a country that was part of the huge computer game called Oblivion, which is so beautifully detailed that I have often ridden around it to enjoy the scenery and weather and have hardly bothered to kill anything at all.

At the same time as I began exploring the wonderful Kingdom of Dementia, which is next door to the Kingdom of Mania, I was also experiencing the slightly more realistic experience of being a 59 year old who finds they have early onset Alzheimer's.

Apparently I reacted to this situation in a reasonably typical way, with a sense of loss and abandonment with an incoherent, or perhaps I should say, violently coherent fury that made the Miltonic Lucifer's rage against Heaven seem a bit miffed by comparison. That fire still burns.

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.

And so now I'm a game for real. It's a nasty disease, surrounded by shadows and small, largely unseen tragedies.

People don't know what to say, unless they have had it in the family.

People ask me why I announced that I had Alzheimer's.

My response was: why shouldn't I?

I remember when people died "of a long illness" now we call cancer by its name, and as every wizard knows, once you have a thing's real name you have the first step to its taming.

We are at war with cancer, and we use that vocabulary.

We battle, we are brave, we survive. And we have a large armaments industry.

For those of us with early onset in particular, it's more of 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 because I'm too young to have Alzheimer's for free, a situation I'm okay with, in a want-to-kick-a-politician-in-the-teeth-kind of way.

But, on the whole, you try to be your own doctor.

The internet twangs night and day. I walk a lot and take more supplements than the Sunday papers. We talk to one another and compare regimes.

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.

Fortunately, I have the Greek Chorus to calm me down

Soon after I told the world my website fell over and my PA had to spend the evening negotiating more bandwidth.

I had more than 60,000 messages within the first few hours.

Most of them were readers and well-wishers.

Some of them wanted to sell me snake oil and I'm not necessarily going to dismiss all of these, as I have never found a rusty snake.

But a large handful came from 'experienced' sufferers, successfully fighting a holding action, and various people in universities and research establishments who had, despite all expectations, risen to high places in their various professions even while being confirmed readers of my books.

And they said; can we help? They are the Greek Chorus. Only two of them are known to each other and they give me their advice on various options that I suggest.

They include a Wiccan, too. It's a good idea to cover all the angles.

It was interesting when I asked about having my dental amalgam fillings removed.

There was a chorus of ? hrumph, no scientific evidence, hrumph???., but if you can afford to have it done properly then it certainly won't do any harm and you never know.

And that is where I am, along with many others, scrabbling to stay ahead long enough to be there when the cure, which I suspect may be more like a regime, comes along.

Say it will be soon - 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.

And in most cases you will find alongside the sufferer you will find a spouse, suffering as much. It's a shock and a shame, then, to find out that funding for research is three per cent of that which goes to find cancer cures.

Perhaps that is why, for example, that I know three people who have successfully survived brain tumours but no-one who has beaten Alzheimer's???although among the Greek Chorus are some who are giving it a hard time.

I'd like a chance to die like my father did - of cancer, at 86.

Remember, I'm speaking as a man with Alzheimer's, which strips away your living self a bit at a time.

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.

Right now, I envy him. And there are thousands like me, except that they don't get heard.

So let's shout something loud enough to hear. We need you and you need money. I'm giving you a million dollars. Spend it wisely.


TOPICS: Books/Literature; Health/Medicine; Humor
KEYWORDS: alzheimers; fantasy; pratchett; terrypratchett
Terry Pratchett is one of my all-time favorite authors. If he is one of your favorite authors as well, please consider donating the price of a paperback (or even a hardback) to Alzheimer's research, in his honor.
1 posted on 03/16/2008 11:56:21 PM PDT by Hetty_Fauxvert
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To: Hetty_Fauxvert

My sainted FDR-liberal grandma was afflicted with Alzheimer’s, and did not recognize me for the last few years of her life. It is a very unpleasant disease, although I can’t say she ever really suffered. She was no more than a shell of a human being by the end, but she was comfortable and pain-free and surrounded by people who loved her even if she didn’t know who they were.


2 posted on 03/17/2008 12:37:36 AM PDT by ccmay (Too much Law; not enough Order.)
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To: Hetty_Fauxvert
Mine too. What a class act!

I'm saving this line because it is so purely Terry -- too bad it's a bit long for a tagline.

Some of them wanted to sell me snake oil and I'm not necessarily going to dismiss all of these, as I have never found a rusty snake.

3 posted on 03/17/2008 12:43:15 AM PDT by Ronin (Bushed out!!! Another tragic victim of BDS.)
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To: Hetty_Fauxvert; MeekOneGOP; Conspiracy Guy; DocRock; King Prout; Darksheare; OSHA; martin_fierro; ..
Ping for true greatness.


4 posted on 03/17/2008 1:17:38 AM PDT by Slings and Arrows ("Code Pink should guard against creating stereotypes in the Mincing Community." --Titan Magroyne)
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To: Hetty_Fauxvert

He’s one of my favorites as well. At the moment I have several of his books lent out to different people who are just getting started. The first bag’s always free!

He’s right about the cancer v. Alzheimer’s - I’ve seen both in my own family and cancer IS ‘better.’

I checked the original site for a researcher to donate money to, and don’t see one - do you have a link?


5 posted on 03/17/2008 3:04:08 AM PDT by nina0113 (If fences don't work, why does the White House have one?)
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To: RedRover

Save.


6 posted on 03/17/2008 4:01:27 AM PDT by RedRover (DefendOurMarines.org | DefendOurTroops.org)
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To: Hetty_Fauxvert

Going Postal bump!


7 posted on 03/17/2008 5:54:47 AM PDT by whipitgood (Neither of, by, nor for the people any longer...)
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To: nina0113; All
The SFWA (Science Fiction and Fantasy Writers of America, of which I'm a proud member!) web site (http://www.sfwa.org/news/2008/pratchett.htm) referred me to the Match It for Pratchett web site, where you can link to make a donation, or buy a T-shirt to help support the fight against Alzheimer's: http://www.matchitforpratchett.org/. BTW, the quote I saw on a comment board that I liked best was "HE ATE'NT DEAD YET!" I think it would please the inimitable Pterry very much if fans and friends matched his generous gift of 500,000 pounds for research.
8 posted on 03/17/2008 9:08:54 AM PDT by Hetty_Fauxvert (Anybody but Hillary, Obama AND Huckabee. Hold your nose, get your barf bag and vote McCain.)
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To: nina0113

I just started reading ‘Good Omens’ for my class on the apocalypse, and I have to say it’s one of the best books I’ve ever read. I’ve read a little of his other stuff, but I was really sick at the time and on painkillers so I can’t remember much about it, except that I found it really funny (Well, at that point the meds made most things really funny, but his books were still funnier than pretty much everything else).


9 posted on 03/17/2008 11:55:47 AM PDT by Hyzenthlay (I aim to misbehave.)
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To: Hetty_Fauxvert

Sad to hear. His novels are pretty good. They finally made one (Hogfather?) into a movie. I hope he gets good treatment. I think there was a new treatment out using Enbriel or something like that.


10 posted on 03/17/2008 12:01:11 PM PDT by techcor
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To: ccmay
Mom (soon to be 87) has got it, and it's entering "late stage" now according to the neurologist during our visit last week.

We lost my dad just over 6 months ago; he also had dementia, but his was more age-related brain atrophy stuff (age 94).

This disease is one of nature's cruel little tricks. I'm still not quite right with God -- but maybe I better fix it, because of my gene pool....sigh

11 posted on 03/18/2008 5:07:23 PM PDT by ErnBatavia (...forward this to your 10 very best friends....)
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To: Coleus
Ping!
12 posted on 03/20/2008 12:25:26 PM PDT by SunkenCiv (https://secure.freerepublic.com/donate/______________________Profile updated Saturday, March 1, 2008)
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To: nina0113

Hi, don’t know if you’re still interested but the charity Terry gave to and is supporting is called The Alzheimer’s Research Trust based in the UK - all the money goes towards funding scientists but its not a cuddly charity obviously - no one wants to think about things like this. So any donations are welcome!
link is www.alzheimers-research.org.uk


13 posted on 06/30/2008 9:36:01 AM PDT by furzedowner
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To: Hetty_Fauxvert
Coming from someone who has experienced the effects of Alzheimer's I would like to say ...Like everything else in this life you have to fight to survive you just have a little bit of a more difficult fight ahead of you. I wish you well which goes without saying but keep fighting. I don't think you are one who would give up easily.....x
14 posted on 07/25/2008 7:15:05 AM PDT by louiselamb7 (Louise Lamb)
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To: louiselamb7

Hi Louise
I am writing in appreciation of your remarks on being in contact/experience of Alzheimers.
I find it pleasing that such a fine man as Terry Pratchett can seek to help so many people who are unable to afford the medicine they need - I hope to make my post a public one.
Because I need to know opinions from others - could my Mother - who succumbed to dementia - closely allied to Alzheimers - have been “helped” on her way by the brutality doled out to her by my Stepfather.
I find it frightening - Louise - there is such cruelty


15 posted on 08/02/2008 12:49:45 PM PDT by Original Patricia (Can Harsh Trearment make it worse)
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To: Original Patricia

There are a bunch of film-like things made from Pratchett’s books, but since someone mentioned the Hogfather, I should note that The Colour of Magic/The Light Fantastic was made into a similar quality production. See Wikipedia for more Pratchett adaptations.


16 posted on 09/27/2008 9:56:10 PM PDT by connellybarnes
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To: Hetty_Fauxvert

Thanks so much for posting this speech. My dad has just been diagnosed with early on-set alzhemeirs aged 55 and posts like this about Terry are a real help. I wish there was some way to communicate with him directly, I want to thank him for making the programme he did for the BBC. In some ways I wish he hadn’t because it was the thing that prompted me to ask the medics to look into my dads supposed depression further, which has uncovered this dreadful disease, but in other ways I realise it was the best thing to do because at least he is now on tablets to help slow it down, which hopefully will lead to some extra years with him. Which is so important to me as I’m a daddys girl with the best dad in the world and any extra moments I can have with him and his love the better and richer i know my life will be.
Thanks once again
Big hugs
Laura
xxx


17 posted on 01/18/2010 7:41:21 AM PST by laurafays (Keeping on... keeping on... for the best family in the world!)
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To: laurafays

As for contacting Terry Pratchett, he is quite approachable, which is a little unusual in such a well-known author. (He actually let my husband and I take him to lunch one time at a SF convention! Which was too cool for words.) You could try mailing a letter to his publisher, or he used to lurk and occasionally post on the L-Space board ... do a little research using the words L-space or his old handle, Pterry, and you may turn up a way to email him. He also still does a lot of signings of his books, so you might be able to see him in person sometime.


18 posted on 01/18/2010 1:09:06 PM PST by Hetty_Fauxvert (PETRAEUS IN 2012 ..... PETRAEUS IN 2012 ..... PETRAEUS IN 2012!)
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To: Hetty_Fauxvert

BTW, the Match It For Pratchett web link provided in your forum post now links to a Thai gambling website. I am having trouble finding a legitimate link at this time.


19 posted on 10/20/2013 5:09:09 AM PDT by Morporkian
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To: Morporkian

Good to know. However, you may notice that post is FIVE years old. Things do change on the Internet.


20 posted on 10/20/2013 9:36:37 AM PDT by Hetty_Fauxvert (FUBO, and the useful idiots you rode in on!)
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To: Morporkian; neverdem; narses; SunkenCiv; Nachum; cogitator

Let us know what the real website link is!


21 posted on 10/20/2013 9:45:42 AM PDT by Robert A. Cook, PE (I can only donate monthly, but socialists' ABBCNNBCBS continue to lie every day!)
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To: Robert A. Cook, PE

http://www.youtube.com/watch?v=Z44ip5kYQ8w
http://www.youtube.com/watch?v=NTPdubbQISQ


22 posted on 10/20/2013 9:18:45 PM PDT by SunkenCiv (It's no coincidence that some "conservatives" echo the hard left.)
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