ALZHEIMER’S... and why I won’t let it de­feat me

De­men­tia rates are soar­ing but one suf­ferer is­sues a de­fi­ant mes­sage...

The Mail on Sunday - - Focus - By Bon­nie Estridge

IT MUST have been about five years ago that I no­ticed my mem­ory wasn’t as sharp as i t 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 i n 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 a af­fected is broad – it can be se­vere, d de­bil­i­tat­ing, even trau­matic for ev ev­ery­one in­volved. I’m not try­ing to triv­i­alise that. But I don’t feel sa sad or an­gry or scared, really. I just d don’t dwell on it.

I know things will de­te­ri­o­rate but I haven’t sat and wept or thought: h ‘ Oh my God, why me?’ T 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 for- ward 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.

‘I AM NOT AFRAID’: Bon­nie re­fuses to be dis­heart­ened about her di­ag­no­sis

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