So off I went, reassured, about my business; I did a signing tour in Russia, a signing tour in the U.S.A., which included breakfast at the White House (there were lots of other people there, it wasn’t as if I handed Mrs. Bush the cornflakes or anything), and then I did a signing tour in Italy, where the wife of our ambassador very diplomatically pointed out that I had made a fist of buttoning up my shirt. Well, I had got up early for the flight, and had dressed in the dark, and so we all had a little chuckle, followed by lunch, and I hoped that everyone but me forgot about it.
Back home my typing was now so full of mistakes that it was simpler for me to dictate to my personal assistant. I went to see my GP again and she sent me to Addenbrooke’s Hospital in Cambridge. I have never discussed the interview with her, but either by luck or prescience I ended up in front of Dr. Peter Nestor, one of the few specialists in the country, or maybe the world, who would recognize posterior cortical atrophy, the rare variant of my disease. He and his colleagues put me through a battery of tests, and he looked again at my scans, this time, importantly, in a different place. When he gave me the news that I had a rare form of Alzheimer’s disease I quite genuinely saw him outlined in a rectangle of flaming red lines. We had a little bit of a discussion, and then, because the facility was closing for the day, I went home, passing another doctor putting on his bicycle clips—this was Cambridge, after all, and such was my state of mind that he too was outlined in red fire. The whole world had changed.
I was lucky in several ways. PCA is sufficiently different from “classic” Alzheimer’s that I have met fellow sufferers from it who dislike it being linked with that disease, even though the pathology and the endgame are ultimately the same. The journey, however, is different. PCA manifests itself through sight problems, and difficulty with topological tasks, such as buttoning up a shirt. I have the opposite of a superpower; sometimes, I cannot see what is there. I see the teacup with my eyes, but my brain refuses to send me the teacup message. It’s very Zen. First there is no teacup and then, because I know there is a teacup, the teacup will appear the next time I look. I have little work-arounds to deal with this sort of thing—people with PCA live in a world of work-arounds. A glass revolving door is a potential Waterloo; I have a work-around for that now, too. In short, if you did not know there was anything wrong with me, you would not know there is anything wrong with me. People who have spoken to me for half an hour or so ask me if I am sure I have the illness. Yes, it’s certainly there, but cunning and subterfuge get me through. So does money. The first draft of this speech was dictated using TalkingPoint on my computer which, while not perfect, produces a result that is marvellously better than anything I could tap out on the keyboard. From the inside, the disease makes me believe that I am constantly being followed by an invisible moron who moves things, steals things, hides things that I have put down a second before, and, in general, sometimes causes me to yell with frustration. You see, the disease moves slowly, but you know it’s there. Imagine that you’re in a very, very slow-motion car crash. Nothing much seems to be happening. There’s an occasional little bang, a crunch, a screw pops out and spins across the dashboard as if we’re in Apollo 13. But the radio is still playing, the heater is on, and it doesn’t seem all that bad, except for the certain knowledge that sooner or later you will be definitely going headfirst through the windscreen.
My first call when I got back from Cambridge was to my GP. I wanted to know what was going to happen next. In fact, it became clear that nothing at all was going to happen next unless we made it happen; there was no specialist anywhere local to me prepared to take on an early onset patient with PCA, and therefore nobody who could legitimately write me a prescription for the only palliative Alzheimer’s drug on the market. When I learned this I was filled with a rage, a rage that is with me still, but by now tempered and harnessed to practical purposes. I felt alone. A cancer sufferer, just diagnosed, can at least have some map showing the way the future might, hopefully, go. And I don’t seek to minimize how dreadful that disease would be, but there would be appointments, there would be specialists, there would be tests. Hopefully, you would receive sympathy, and hopefully you would have hope.
But at that time the Alzheimer’s patient was more or less told to go home. Indeed, I have been contacted by patients who were in effect told just that, with not even the suggestion that they might talk to, for example, the Alzheimer’s Society. I will say in another aside, I’m not the sort of person who goes to groups, but much later, I was persuaded to go to a PCA meeting in London, hosted by Professor Rosser of the National Hospital for Neurology and Neurosurgery. I remember the smiles when I started talking about the symptoms and it was hugely refreshing to be among people who understood without having to be told. But I had seen the bicycle clips of fire; I would have thrown a brick through a pharmacy window late at night for the medication I needed, and come to think of it, that might have made a damn good photo opportunity, but friends and contacts of mine who cared about my liberty helped me deal with the situation in the way that people deal with such situations in stupid hidebound bureaucracies. We bent things, just a tiny little bit. It wasn’t as though I was stealing. I still had to pay for the damn drugs.
But then it was time to decide who I was going to tell, and for the reasons given earlier, I decided to tell everybody. After that, my life ceased to be my own. I have had so much mail that not all of it can be answered in my lifetime. And I cannot remember how many interviews I have given. They must run into three figures easily. We did the BAFTA Award–winning documentary, in which I demonstrated to the world the impossibility of my tying a tie (funnily enough, I can tie my shoelaces, presumably because I have known how to do that for longer). I have also been able to write two more books, which my PA insists I tell you were bestsellers, had a stone bridge built over the stream in my garden, have been kissed by Joanna Lumley, and after being, astonishingly, knighted, subsequently made, with the help of knowledgeable friends, a sword—doing it the hard way, by first digging the iron ore out of the ground and smelting it in the garden. Of course, I shall never be able to take it out on the street, because such is the decay of our society that not even Knights can carry their swords in public. But who could ask for anything more? Except for, maybe, another kiss from Joanna Lumley.