Alzheimer’s won’t defeat me. I have so much to look forward to
Dementia rates are soaring but one sufferer issues a defiant message...
IT MUST have been about five years ago that I noticed my memory wasn’t as sharp as it should have been. Yes, I could – and still can – remember all sorts of things that have happened in the past. If close my eyes, I can see – and hear – Bob Dylan playing at the Isle of Wight festival in 1969.
I can also recall the texture of the wide-brimmed hat that I wore at my wedding in 1981. So big events – and little details about them that my husband Chris has completely forgotten – are all there.
But strangely, I found myself getting momentarily stuck on a word that I might use all the time. I wanted to say something but just couldn’t remember how.
The word invariably came back sharply and the incident was so transient that it was hardly noticeable, but it was still annoying.
In many ways, today not much has changed. Except that I now know what caused those curious lapses – lapses that I still experience, perhaps a bit more regularly.
Aged 66, I have been told I ‘probably’ have Alzheimer’s, the most common type of dementia.
My specialists at St George’s Hospital in South London, including the world-renowned Professor Peter Garrard, say it is at such an early stage that they cannot be completely sure. Brain scans don’t show anything sinister yet.
But I’m told my problems are likely to get worse.
I could keep this to myself. There are some friends I’ve not told, the ones who I think might take it badly and become upset. Others have just guessed, noticing how I repeat myself or get mixed up over arrangements. But I’ve decided to be open because, frankly, I think we need to talk about it.
There are 850,000 people with dementia in the UK, and that number is set to soar to two million by 2051. At the moment, one person will be given similar news to me every three minutes.
THE exact cause of this condition is still unknown and there is, it seems, no way to prevent it, although modern medication and staying active both help to slow the progression.
If it doesn’t happen to you or your family, it’s likely it is going to happen to someone you know. And that’s why we need to stop feeling so damn gloomy about it: life doesn’t end with an Alzheimer’s diagnosis – and I’m proof of it.
Occasionally, I get cross when I go to the supermarket for one thing and come back with another, or even nothing at all. I’ll yell at Chris: ‘You don’t know what it’s like!’
In many ways it’s been tougher for him, but he has also been a huge support and that’s made everything a lot easier for me.
I know dementia can be a terrifying prospect for some people and, of course, I’m not pleased. It’s distressing news for anyone. And the spectrum of how people are affected is broad – it can be severe, debilitating, even traumatic for everyone involved. I’m not trying to trivialise that. But I don’t feel sad or angry or scared, really. I just don’t dwell on it.
I know things will deteriorate but I haven’t sat and wept or thought: ‘Oh my God, why me?’ That is pointless. Life goes on.
The best way to describe the way I feel at the moment is optimistic. In the short term, I’m looking forward to a two-week holiday in India with Chris and Christmas with the family. My eldest daughter is getting married next year, and we are renovating our lovely home in Clapham, South London. Although I’m semi-retired, I still review gadgets for a newspaper.
Now I have agreed to take part in a groundbreaking trial, being run by Prof Garrard, into language tests that may help doctors flag up the illness almost before it causes noticeable symptoms.
I know it seems tragic that a woman whose life is words loses her ability to communicate. It’s a bit like the film Still Alice, which stars Julianne Moore as a language professor who develops Alzheimer’s (my friends warned me not to watch it, but I did anyway).
Except that I don’t feel tragic at all. I enjoy my life and there are a lot of reasons to be cheerful, as Ian Dury once sang. If anything, things are better now than they have been for a while.
My ‘probable’ diagnosis happened in stages. In about 2013, I started to suffer from what I was told was anxiety. These things are never down to one event but part of it was my worry about a friend who was
quite unwell for a time. Thankfully she is now back to full health.
My mother died young, aged just 55, in the late 1970s after a holiday to Thailand. She picked up some sort of ghastly illness, and at first seemed to recover, only for it to come back with fatal consequences. I was haunted by the idea that the same thing would happen to other people I loved.
This, coupled with my memory problem, led my GP to refer me to a neurologist in early 2015. Chris came with me for the appointments at a private hospital.
Initially I was given medication, which I still take today, but I continued to visit the hospital regularly.
After a while, it seemed more and more obvious that it was my memory, not the anxiety, that was the problem, so in August last year my doctor referred me, on the NHS, to Prof Garrard. I had a brain scan, which came back normal, and did various written and verbal tests.
At first they said I had mild cognitive impairment (MCI) – slight memory and thinking problems that affect up to one in five of those over 65 – and they wanted me to keep coming back.
ABOUT ten per cent of MCI sufferers go on to develop dementia, mainly Alzheimer’s, every year. However, there is currently no way of knowing who will and who won’t – and this is what Prof Garrard’s team is trying to solve with its new research.
I’ve been to see Prof Garrard once a month ever since. It was in about June that the ‘A word’ was first mentioned, but I have to say it didn’t come as a huge shock.
I’m not sure what I did afterwards. I probably took my Tibetan terrier Harry for his daily oneand-a-half-hour walk. If it was a Monday, I would have gone to my regular Zumba class, which I am completely addicted to.
I go out every day with Harry, and meet my other dog-walking friends. It’s good exercise and we all have a chat about what’s going on in the world.
I’ve told most of them about Alzheimer’s. If I start to say things that don’t make sense, they just roll their eyes and ask me what I’m going on about – and we have a laugh about it. I just say: ‘Oh, you know what my brain is like.’
I don’t know why this has happened to me and, to be truthful, I don’t wonder.
I’ve always been in good shape and enjoyed staying fit. I did smoke but gave up more than a decade ago. After Zumba, I feel fantastic – it’s better than any happy pill, and I’d recommend it to anyone. I also look good.
I realise my condition will develop. Memory problems will become more severe, with further symptoms causing confusion, disorientation and getting lost in familiar places, and more difficulties with speech and language.
But there is a huge amount of research going on around the world into better tests, treatments, and, of course, to find a cure.
I’m glad to be doing my bit to further the understanding of this disease, and hopefully help make life a bit easier for others.
I’m all too aware of what may well lie ahead. But I know that I am not alone. And I’m not afraid.
If you are interested in the St George’s Characterising Cognitive Decline Study into ageing, visit the Join Dementia Research website at joindementiaresearch.nihr.ac.uk.