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 may 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 $1 million 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 percent of Britons think there is a stigma surrounding dementia. Only 25 percent 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 sixty; that’s supposed to be the new forty. 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 recognized 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.
TAXWORLD
What is an author to do when every other word he writes will be written for the Chancellor of the Exchequer?
Letter to The Times, 23 May 2009
Sir,
I am very definitely a high-rate taxpayer, although in self-defence I must admit I have become so simply by writing a lot of fairly harmless books over a very long time rather than by, for example, ripping the heart out of the financial system through unbridled greed.
So I am, therefore, somewhat peeved to find that, now, slightly more than every other word I write will be written for the Chancellor of the Exchequer, who will undoubtedly waste the money on computers that don’t work and other people’s duck shelters.