News, views and top stories in your inbox. Don't miss our must-read newsletter Sign up Thank you for subscribing We have more newsletters Show me See our privacy notice Invalid Email

On my way to interview Sir Terry Pratchett I tweeted about our meeting.

The responses ranged from: “How amazing! He’s a fabulous writer and totally awe-inspiring person”, to “I hope you find him as well as can be expected” and “You and he are both doing so much for dementia”.

And that’s why we were meeting. To discuss his life now that it includes being the highest profile campaigner for Alzheimer’s while actually living with the disease.

The Discworld author first said he had it in December 2007, just over a year after I’d lost my mum Amy to early-onset Alzheimer’s.

It was a particularly bleak period as we were told that my dad Neville also had it.

Until then, I’d felt a bit of a voice in the wilderness, going on about the lack of understanding and good care.

Terry’s honesty was a eureka moment for me. Since then I had always wanted to meet him and he, apparently, was keen to see me.

But it didn’t seem that way when I introduced myself and went to shake his hand.

Dressed from head-to-toe in his trademark black, a top hat and frock coat, he looked like an authoritarian Dickensian char­­acter from his Oliver Twist-inspired novel Dodger.

When he didn’t offer his hand back my heart sank a little.

“He can’t see your hand,” his book publicist Lynsey explained.

Terry, 64, has a form of early-onset Alzheimer’s called PCA (Partial Cortical Atrophy) which affects the part of the brain responsible for visual signals.

As we sit down he reaches to fiddle with my phone, trying to make out what it is.

When I explain it is recording our conversation, he cheekily says “amateur!”

Terry’s twinkly-eyed humour made me, by contrast, recall my mum’s constant tears and depression.

“It surprises me. It surprises my specialist,” he tells me.

(Image: Daily Mirror)

He has written eight books since his diagnosis and his doctor has told him he has “Terry Pratchett’s PCA, which isn’t like anyone else’s PCA.”

He can no longer use a keyboard but, instead, has a program which enables him to talk to his computer.

So, how else has his illness affected him?

“Words escaping just about the time you’re going to say something. You’ve got it lined up and suddenly it just slips away,” he says.

His words are very considered, his answers long and drawn out.

If he forgets a word there’s a silence as he cogitates, before returning to the point where he left off and continuing the anecdote.

I try not to ask too many questions so as not to interrupt his thoughts. You can almost hear the determination to hang on to facts and to maintain his fluency.

I ask him if he has trouble getting dressed, which is one of the first signs that a person may have cognitive difficulties and we joke about the fact that being dressed all in black makes it pretty hard to screw up.

“You’ll notice,” he adds naughtily, “that my hat is not on upside down.”

I note that his pants aren’t on his head either, which was sometimes the case with my dad.

“Well, pants are pants on the whole,” he chuckles, “and it’s not particularly easy to get them on back to front.”

As with most of us, Terry finds that a routine helps maintain his daily existence.

“I get up, pop my pills,” he says, referring to Aricept and Ebixa which can, in some cases, temporarily arrest the progress of Alzheimer’s.

He’s been paying for the drugs since he was diagnosed in his late 50s because you have to be 65 to get them free.

“I’ve got money, so I don’t notice,” he remarks, “but it annoys me.”

Does he appreciate that his experience of Alzheimer’s is a more privileged one than most?

“Oh, absolutely,” he says before mulling over the fact he’s still “fit for purpose if that purpose is to spend most of the day writing books.”

His books have sold more than 70 million copies and Terry is now almost as well known for talking honestly about living with Alzheimer’s but says: “I don’t like to be an icon in this matter because there are people far, far worse off.”

Then he says something astonishing: “I think the best thing I ever did with my life was stand up and say I’ve got Alzheimer’s.”

Terry, who married Lynne 44 years ago and has a 36-year-old writer daughter Rhianna, tells me that as a young journalist he was told never to use the word cancer, “as people were sensitive”.

The first time he heard it used was when broadcaster Richard Dimbleby died in 1965.

“And at last it seemed as though someone had opened a window and people were talking about it and so...”

At this point he loses his train of thought, concentrates, says: “I’m tripping over myself.”

(Image: Rex)

Gathering his thoughts Terry adds: “Let me go back to the beginning of the sentence. I get all my clauses in the wrong place.”

He goes on to explain that once he was diagnosed it was almost as if he’d been told: “OK, you’ve got it, now go home and get on with it.”

I tell him the same thing happened to my parents.

Terry says: “If it was cancer it would be sorted. But with this you and your spouse are left in the lurch”.

It was then he decided to “tell everybody” about his Alzheimer’s.

He says he knows “a couple of well-known people” who have the disease “and aren’t saying” and he’s told them they could do so much good by opening up.

Mind you, his time hasn’t been his own since sharing his diagnosis.

“People come up to me in the street and tell me about their mum, their granny.

"One time, in Salisbury, a big lorry screeched to a halt and the man was in tears, talking about his mum.”

I wonder how Lynne, the spouse “left in the lurch”, is coping with the changes.

Terry says: “Hmmm, what’s the average day? Two cups of tea in bed, talking about stuff, me going down into my bathroom, do the pills... go and pick up pants.

“Lynne’s quite methodical about where stuff’s left. I know where to find the clean stuff and I put the dirty stuff in the other bag.

"Then I go down, open up the chicken coop and feed them, then I open up the chapel which is where I work... go for a walk... and that’s it.”

(Image: Fiona Phillips/Molly Mathieson)

Does he ever get depressed? “No, my father was a stoic,” he replies before asking about my father.

I tell him he was killed by the overuse of drugs for his Alzheimer’s. “Ah, so that was murder,” he exclaims.

Then Terry expands, moving on to assisted dying. “My dad said to me when he knew he was dying... ‘if you ever see me just lying there with pipes and tubes, tell them to shut me down’.

“He was in a nice hospice but my mother had to watch him more or less start looking like an Egyptian mummy.

"The nurses were filling him with morphine, so that is an assisted death in the first place, so why go through all that s***e?”

He tells me he has Tony Nicklinson’s picture in his writing room and is furious that “he had to starve himself to death” instead of being allowed the right to die.

“If someone is compos mentis and his plea to die is witnessed by two doctors, how can an assisted death like that be murder?”

So, does Terry have an end-of-life plan? “Yes, I plan to die... it’s all the rage,” he cheekily retorts.

“I have a living will and I have friends, and I have money and I have hope.

“There are things around and I know where they can be got quite easily but I quite like waking up to the sunshine.

"I don’t think about the end game. I’ve got lots to occupy my mind. It’s the rage that keeps me going.”

And long may he rage against the dying of the light. I, for one, will always hold a candle to him.

Terry Pratchett's latest book, A Blink of the Screen: Collected Shorter Fiction, is available now.