Last days laugh­ing

Like my tat­too says, I won’t let this cruel dis­ease beat me

Chat - - Contents - By Vicky Huntley, 49, from east Lon­don

As I reached the top of the stairs, I stood there, puz­zled.

‘What did I come up here for again?’ I mum­bled. We’ve all done it, haven’t we? Most peo­ple would curse them­selves for be­ing for­get­ful or put it down to a se­nior mo­ment.

But as I stood here now, a shiver of fear ran down me.

Go­ing back down­stairs to where my part­ner of 11 years, Martin, was watch­ing West Ham on the TV, I sat down.

‘I’ve de­cided. I want to take the test,’ I said softly. He switched the telly off. ‘Are you sure?’ he asked, know­ing ex­actly what I meant.

‘Yes,’ I nod­ded. ‘It’s like a guillotine hang­ing over me. If we know, at least we can deal with it, be pre­pared.’

I was talk­ing about the test for Alzheimer’s.

You see, I’d lost three members of my fam­ily to a rare form of the aw­ful dis­ease.

My mum Su­san had been 58 when she’d died, her dad Peter had been 42, and his dad had suc­cumbed to it aged just 32.

It had been aw­ful to watch my bright, bub­bly mum dis­ap­pear.

Most cases of Alzheimer’s are not ge­net­i­cally in­her­ited.

But the type af­fect­ing my fam­ily was.

And be­cause three gen­er­a­tions of the same fam­ily had died from it, I’d al­ways known we were at a much higher risk, too.

I’d tried not to let it con­sume me. I’d fo­cused in­stead on my kids from my first mar­riage – Leanne, then 18, and Craig, 16.

Now I had a man I adored and a job I loved as a sup­port worker for adults with learn­ing dis­abil­i­ties.

Martin and I en­joyed tak­ing trips to Great Yar­mouth and hav­ing a drink at our lo­cal pub.

At week­ends, we’d go to watch our beloved West Ham play.

But, lately, I’d no­ticed that I was for­get­ting things more... It’s why I wanted to know. Be­fore the test, I was given six months of coun­selling to pre­pare me.

Then I went for the sim­ple blood test to see if I car­ried a pre­se­nilin 1 (PS1) gene that made me more likely to de­velop Alzheimer’s.

I was so fright­ened as I was called into the doc­tor’s of­fice.

‘I’m afraid the re­sults weren’t good,’ he said. ‘You have the gene.’

Be­side me, Martin sobbed into his hands.

I was just 37 and the life I’d mapped out in front of me was go­ing to be snatched away.

But, strangely, I felt a bur­den lift from my shoul­ders.

‘At least we know,’ I said, try­ing to com­fort Martin. ‘We can deal with it now.’

No­body could tell me when I’d get it, although I was pretty sure I was show­ing early signs.

And be­cause of the ages my rel­a­tives had died, I knew I’d prob­a­bly suf­fer the same fate.

Martin and I had thought we had an­other 50 years to­gether...

I’d just have to cram half a decade of love, life and laugh­ter into 20 years – if I was lucky.

But I vowed that while Alzheimer’s would get its claws into me one day, it wouldn’t beat me yet.

So, de­spite the blow, it was busi­ness as usual. I car­ried on work­ing, hav­ing a stroll round Da­gen­ham Mar­ket, bar­ter­ing with the stall­hold­ers.

And Martin, once he’d got his head around it, was my rock.

‘I’m go­ing nowhere,’ he promised me.

And the fol­low­ing year, he proved it re­ally was in sick­ness and in health when we mar­ried and hon­ey­mooned in Menorca.

But slowly, Alzheimer’s crept up on me.

I’d al­ways loved read­ing

I’d no­ticed I was for­get­ting things more and more

Martina Cole books, but now I’d read the same line over and over again, as I kept for­get­ting what I’d read.

Then, one day, I went to the su­per­mar­ket to do our weekly shop.

But stand­ing in the aisles, it seemed like ev­ery­thing was clos­ing in on me.

‘I can’t re­mem­ber why I’m here,’ I sobbed.

With that, I aban­doned the trol­ley and fled home.

Af­ter five years, I had to quit work be­cause I kept mak­ing mis­takes.

And I knew it was time to give up driv­ing – I was a dan­ger to my­self and other peo­ple.

It felt like my in­de­pen­dence was be­ing ripped away from me.

My bal­ance and speech started to be af­fected too.

The frus­tra­tion gave me ter­ri­ble mood swings, and Martin bore the brunt of them.

He was so kind and un­der­stand­ing, though.

And I still vowed to keep on fight­ing.

It’s why, last year, I de­cided to show Alzheimer’s ex­actly what I thought of it.

I went to a tat­too par­lour and had Alzheimer’s can kiss my arse tat­tooed on my right arm. ‘There,’ I grinned. ‘Take that!’ Now, though, 11 years af­ter I was di­ag­nosed, ev­ery day is a bat­tle.

My speech is the big­gest thing I have trou­ble with.

My brain knows what I want to say but I strug­gle to get the words out.

Martin still works as a bus driver, but I can’t be left alone.

Leanne, now 29, comes round when he’s out. My kids have been great. I try not to worry whether I’ve passed the Alzheimer’s gene on to them. I pray they’ve been lucky. If the kids get tested, it’ll be their choice. We haven’t dis­cussed it yet.

I have five amaz­ing grand­chil­dren now, and Martin and I still en­joy time to­gether. We go and watch the footy and have meals out. We live for the day and can’t think about to­mor­row. It’s hard to be­lieve, but I’m not scared. Alzheimer’s will rob me of a fu­ture but it won’t take ev­ery­thing.

I still have a fam­ily, love, hap­pi­ness, a sense of hu­mour.

How­ever long I have left, I’ll spend my last days laugh­ing.

If you don’t be­lieve me, just check out my tat­too!

Hubby Martin – my rock Me in 2014, af­ter a train­ing course for my ca­reer With my daugh­ter Leanne

My ink says it all! I’m liv­ing for NOW!

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