Vicki paves a path for un­der­stand­ing

Tweed Daily News - - FRONT PAGE - Liana Turner liana.turner@tweed­dai­

LIV­ING with de­men­tia can be like spend­ing each day in a maze and each morn­ing, hav­ing to re-dis­cover your­self.

Kingscliff res­i­dent Vicki Noo­nan knows this ex­pe­ri­ence all too well, and her jour­ney to come to grips with early-on­set de­men­tia has cul­mi­nated in a book, ti­tled Maz­ing Me.

It’s been about three years in the mak­ing, and some of her writ­ing has been lost along the way, on “bad days” when her dis­ease has reared its ugly head.

But while it can be tor­ment­ing on those liv­ing with it – and in­deed their loved ones – Mrs Noo­nan said de­men­tia needn’t be all doom and gloom, but a chance to em­brace the present and achieve long-held goals.

Mrs Noo­nan’s plans of pub­lish­ing a book have now come to fruition, and she hopes this helps those with de­men­tia, while as­sist­ing oth­ers to bet­ter un­der­stand the cir­cum­stances suf­fer­ers face. She had not ini­tially planned to write a book, but found writ­ing was a use­ful way to re­mem­ber the things she learnt about her­self, and her dis­ease, each day.

“The things I was learn­ing, I was for­get­ting, so a lot of peo­ple were treat­ing me dif­fer­ently,” she said.

“While I was writ­ing (the book), each day I’d wake up in a dif­fer­ent place to the day be­fore.

Mrs Noo­nan was just 58

years old when she was di­ag­nosed four and a half years ago.

Her hus­band, Graeme, felt some­thing was amiss when she was ex­pe­ri­enc­ing mem­ory loss while un­der­go­ing treat­ment for de­pres­sion.

Since then, get­ting used to what de­men­tia would look like for her was a steep learn­ing curve, and it’s still un­pre­dictable, from one day to the next. With unique traits aris­ing in each per­son liv­ing with the dis­ease, this of­ten seemed like a guess­ing-game.

“It felt like a maze to me,” Mrs Noo­nan said.

“I didn’t know which way to turn each day. I didn’t know what to do.”

But she said it was still pos­si­ble to grow, and to en­joy life, even while liv­ing with de­men­tia.

That’s some­thing she hopes her book, which was pub­lished by Xlib­ris and will soon be avail­able in lo­cal book stores, will help both those liv­ing with the dis­ease and their loved ones to bet­ter un­der­stand.

“I just wanted to make it a fairly pos­i­tive book,” she said.

“It was (a chance) to let my chil­dren know that I had grown as a per­son and that even though I had de­men­tia, I was still learn­ing new things.

“There’s over 400,000 peo­ple with de­men­tia in Aus­tralia, and peo­ple with younger-on­set de­men­tia are be­ing di­ag­nosed ev­ery day, so I thought maybe they’re the peo­ple that might get some­thing out of it.”

She said some­thing of­ten mis­un­der­stood was the life ex­pectancy of those with early-on­set de­men­tia, and urged oth­ers to make the most of life, while they could still en­joy hob­bies.

“A lot of peo­ple hear the words early-on­set de­men­tia and think that means you have got lots of years left,” she said.

“But peo­ple with early-on­set de­men­tia don’t live as long as peo­ple who are di­ag­nosed later on. I want peo­ple to know that if you’ve got de­men­tia, you can live well with the dis­ease. You don’t have to suf­fer.”

Her book, which con­tains sto­ries, images and a range of po­ems, is some­thing Mrs Noo­nan hoped ev­ery­one fac­ing a jour­ney with de­men­tia could con­nect with.

“Ev­ery­one’s go­ing to be in their own lit­tle maze and I’m hop­ing they can nav­i­gate them­selves around another cor­ner and re­alise that they can still have fun and they can still en­joy life,” she said.

“But it’s re­ally im­por­tant they get in and do the things they re­ally want to do now.”

For the Noo­nans, this has meant spend­ing time with loved ones and en­joy­ing the com­pany of their 10-week-old grand­son.

Mr Noo­nan said one of the great­est chal­lenges since the di­ag­no­sis had been its im­pact on their two sons, but he was proud and pos­i­tive about his wife’s de­ter­mi­na­tion.

The Aus­tralian Bu­reau of Sta­tis­tics re­cently found de­men­tia is the lead­ing cause of death in Aus­tralian women and the sec­ond lead­ing cause of death for all Aus­tralians.

Alzheimer’s Aus­tralia Chief Ex­ec­u­tive Of­fi­cer Ma­ree Mccabe said more re­search into the dis­ease was vi­tal.

“This (statis­tic) com­bined with the in­creas­ing preva­lence of de­men­tia is surely a cause of con­cern for all Aus­tralians,” Ms Mccabe said.

“While we are liv­ing longer lives, more and more of our moth­ers, sis­ters, daugh­ters and part­ners face a fu­ture of liv­ing with de­men­tia and even­tu­ally dy­ing of de­men­tia.

“De­men­tia is un­doubt­edly one of the big­gest pub­lic health chal­lenges fac­ing Aus­tralia, with more than 413,000 Aus­tralians liv­ing with de­men­tia and an es­ti­mated 1.2 mil­lion peo­ple in­volved in the care of some­one with de­men­tia.”

She said the num­ber of Aus­tralians with de­men­tia was ex­pected to grow to 1.1 mil­lion by 2056, un­less there’s a ma­jor med­i­cal break­through.

“The emo­tional cost to the per­son liv­ing with de­men­tia and their loved ones is pro­found,” she said.

“The an­nual cost of de­men­tia in Aus­tralia is $14.67 bil­lion and is ex­pected to be $36.85 bil­lion by 2056.”


HOT OFF THE PRESS: Kingscliff res­i­dent Vicki Noo­nan with her book, Maz­ing Me, which ex­plores her jour­ney with early-on­set de­men­tia.

Vicki Noo­nan with hus­band Graeme and their pooch, Beanie.


Gra­ham and Vicki Noo­nan.

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