Alanna Shaikh: How I'm preparing to get Alzheimer's

Translator: Morton Bast Reviewer: Thu-Huong Ha

Translator: Merili Reck Reviewer: Liis Oblikas

I'd like to talk about my dad.

Ma tahan teile rääkida oma isast.

My dad has Alzheimer's disease.

Mu isal on Alzheimeri tõbi.

He started showing the symptoms about 12 years ago,

Esimesed sümptomid ilmnesid 12 aasta eest

and he was officially diagnosed in 2005.

ning lõplik diagnoos pandi 2005. aastal.

Now he's really pretty sick. He needs help eating,

Tänaseks on ta juba väga haige. Ta vajab abi söömisel ja riietumisel ning

he needs help getting dressed, he doesn't really know where he is

ta ei adu enam enda ümber toimuvat ning

or when it is, and it's been really, really hard.

on samuti kaotanud ajataju. See kõik on olnud väga kurnav.

My dad was my hero and my mentor for most of my life,

Mu isa on peaaegu terve elu olnud minu kangelane ja mentor,

and I've spent the last decade watching him disappear.

kuid viimase kümne aasta jooksul olen ma näinud teda vaikselt hääbumas.

My dad's not alone. There's about 35 million people globally living with some kind of dementia,

Minu isa ei ole ainus. Umbes 35 miljonil inimesel esineb mingi dementsuse vorm

and by 2030 they're expecting that to double to 70 million.

ning 2030. aastaks on haiguse põdejate arv tõenäoliselt kahekordistunud.

That's a lot of people.

See on tohutu hulk inimesi.

Dementia scares us. The confused faces and shaky hands of people who have dementia,

Dementsus hirmutab meid. Põdejate segaduses näoilmed ja värisevad käed ning

the big numbers of people who get it, they frighten us.

suur arv on äärmiselt heidutavad.

And because of that fear, we tend to do one of two things:

Hirmust ajendatuna teeme me ühte kahest:

We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me."

Me kas eitame olukorda ja korrutame endale, et minuga seda ei juhtu

Or, we decide that we're going to prevent dementia,

või otsustame haigust teadlikult ennetada

and it will never happen to us because we're going to do everything right and it won't come and get us.

ning arvame, et meieni see ei jõua, sest oleme teinud kõik selle vältimiseks.

I'm looking for a third way: I'm preparing to get Alzheimer's disease.

Mina otsin kolmandat võimalust: ma olen valmis Alzheimerit põdema.

Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.

Muidugi on ka ennetamine oluline ning ma tegelen sellega igapäevaselt:

I'm eating right, I'm exercising every day, I'm keeping my mind active,

ma söön õigeid asju, olen füüsiliselt aktiivne ning treenin oma mõistust.

that's what the research says you should do.

Uurimused väidavad, et see kõik aitab haigust ennetada.

But the research also shows that there's nothing that will 100 percent protect you.

Kuid uurimused näitavad ka seda, et miski ei suuda tõbe täiesti kindlalt ära hoida.

If the monster wants you, the monster's gonna get you.

See peletis saab su alati kätte.

That's what happened with my dad.

See juhtuski minu isaga.

My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.

Ta oli kakskeelne professor, kes tegeles male, bridži ja vahel ka ajakirjandusega.

(Laughter)

(Naer)

He got dementia anyway.

Kuid see kõik ei päästnud teda Alzheimerist.

If the monster wants you, the monster's gonna get you.

See peletis saab su alati kätte.

Especially if you're me, 'cause Alzheimer's tends to run in families.

Eriti minu puhul, sest Alzheimeri tõbi on päritav.

So I'm preparing to get Alzheimer's disease.

Niisiis olen ma valmis Alzheimerit põdema.

Based on what I've learned from taking care of my father,

Oma isa eest hoolt kandes ning

and researching what it's like to live with dementia, I'm focusing on three things in my preparation:

uurimustööd tehes sain teada, et pean keskenduma kolmele aspektile:

I'm changing what I do for fun, I'm working to build my physical strength,

esiteks üritan ma muuta oma harjumusi ja füüsiliselt aktiivsem olla ning

and -- this is the hard one -- I'm trying to become a better person.

teiseks püüan ma midagi peaaegu võimatut, ma üritan saada paremaks inimeseks.

Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.

Alustagem hobidest. Dementsuse süvenedes on aina raskem elust rõõmu tunda.

You can't sit and have long talks with your old friends, because you don't know who they are.

Sa ei saa enam sõpradega pikki vestlusi pidada, sest sa ei tunne neid ära.

It's confusing to watch television, and often very frightening.

Telesaated tekitavad segadust ja hirmu.

And reading is just about impossible.

Lugemine on peaaegu võimatu.

When you care for someone with dementia, and you get training,

Dementse inimese eest hoolitsemisel õpetatakse, et

they train you to engage them in activities that are familiar, hands-on, open-ended.

haige peab tegelema millegi tuttavaga, mis nõuab käelist ja piiritlemata tegutsemist.

With my dad, that turned out to be letting him fill out forms.

Minu isa puhul oli see ankeetide täitmine.

He was a college professor at a state school; he knows what paperwork looks like.

Ta oli riikliku ülikooli õppjõud ning tundis bürokraatiat läbi ja lõhki.

He'll sign his name on every line, he'll check all the boxes,

Ta signeerib igale joonele oma nime, teeb kõikidesse kastidesse ristikesed ning

he'll put numbers in where he thinks there should be numbers.

kirjutab numbrid sinna, kus tema arvates peaksid numbrid olema.

But it got me thinking, what would my caregivers do with me?

Ning see pani mu mõtlema. Mida minu hooldajad minuga teeksid?

I'm my father's daughter. I read, I write, I think about global health a lot.

Ma olen oma isa tütar. Ma loen, kirjutan ja mõtlen tihti ülemaailmsest tervisest.

Would they give me academic journals so I could scribble in the margins?

Kas mulle antakse akadeemilised artiklid, et ma saaksin nende servadele sirgeldada?

Would they give me charts and graphs that I could color?

Või antakse mulle värvimiseks tabeleid ja graafikuid?

So I've been trying to learn to do things that are hands-on.

Niisis olen ma püüdnud tegeleda asjadega, mis nõuavad käelist tegevust.

I've always liked to draw, so I'm doing it more even though I'm really very bad at it.

Mulle on alati meeldinud joonistada, kuigi ma ei oska seda eriti.

I am learning some basic origami. I can make a really great box.

Samuti õpin ma väga algelist origamit ning võin näiteks suurepärase karbi valmistada.

(Laughter)

(Naer)

And I'm teaching myself to knit, which so far I can knit a blob.

Veel harjutan ma ka kudumist, nüüdseks saan juba korraliku lapiga hakkama.

But, you know, it doesn't matter if I'm actually good at it. What matters is that my hands know how to do it.

Kuid polegi oluline, kui osav ma olen. Tähtis on, et mu käed mäletavad liigutusi.

Because the more things that are familiar, the more things my hands know how to do,

Mida rohkem ma teen ja mida rohkem tegevusi mu käed oskavad,

the more things that I can be happy and busy doing when my brain's not running the show anymore.

seda rohkem on mul tegevust siis, kui mu mõistus hääbuma hakkab.

They say that people who are engaged in activities are happier,

Öeldakse, et tegusad inimesed on õnnelikumad ja lihtsamad hoolealused

easier for their caregivers to look after, and it may even slow the progress of the disease.

ning põevad vahel ka vähem sümptomeid.

That all seems like win to me.

See kõik tundub minu jaoks imeline.

I want to be as happy as I can for as long as I can.

Ma tahan olla võimalikult kaua võimalikult õnnelik.

A lot of people don't know that Alzheimer's actually has physical symptoms,

Paljud ei tea, et Alzheimeri tõvel on füüsilised ja kognitiivsed sümtomid.

as well as cognitive symptoms. You lose your sense of balance,

Haigel tekivad tasakaaluhäired ning samuti

you get muscle tremors, and that tends to lead people to being less and less mobile.

lihasvärinad, mille tulemusel inimene liigub aina vähem ja vähem.

They get scared to walk around. They get scared to move.

Haiged kardavad lõpuks ringi liikuda, isegi liigutada.

So I'm doing activities that will build my sense of balance.

Niisiis harrastan ma tegevusi, mis treenivad tasakaalu.

I'm doing yoga and tai chi to improve my balance, so that when I start to lose it,

Nii jooga kui tai chiga tegelemine parandab tasakaalu ning aitab mul liikuda siis,

I'll still be able to be mobile.

kui mul peaksid tasakaaluhäired tekkima.

I'm doing weight-bearing exercise, so that I have the muscle strength

Samuti tegelen ma jõuharjutustega, mis

so that when I start to wither, I have more time that I can still move around.

aitavad siis, kui mu keha hakkab närbuma.

Finally, the third thing. I'm trying to become a better person.

Ja viimasena, ma üritan olla parem inimene

My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.

Enne haiguse süvenemist oli mu isa lahke ja hooliv ning ta on seda ka praegu.

I've seen him lose his intellect, his sense of humor, his language skills,

Ma näen, kuidas tema mõistus, huumorimeel ja keeleoskused hääbuvad,

but I've also seen this: He loves me, he loves my sons,

kuid ma näen samuti, et ta armastab mind ja minu poegi,

he loves my brother and my mom and his caregivers.

ta armastab mu venda ja mu ema ning ka inimesi, kes tema eest hoolitsevad.

And that love makes us want to be around him, even now.

Armastus hoiab meid tema juures ka nüüd,

even when it's so hard.

kui olukord on väga raske.

When you take away everything that he ever learned in this world,

Kõik elu jooksul õpitu on temalt võetud,

his naked heart still shines.

kuid tema hea süda on endiselt alles.

I was never as kind as my dad, and I was never as loving.

Ma ei ole kunagi olnud nii armastav ega hooliv kui minu isa.

And what I need now is to learn to be like that.

Nüüd ma pean ma õppima, kuidas selliseks inimeseks saada.

I need a heart so pure that if it's stripped bare by dementia, it will survive.

Ma soovin endale puhast südant, mis jääks püsima ka siis, kui haigus võtab kõik muu.

I don't want to get Alzheimer's disease.

Ma ei taha Alzheimeri tõbe põdeda.

What I want is a cure in the next 20 years, soon enough to protect me.

Ma loodan, et 20 aasta pärast on minu jaoks juba ravim olemas.

But if it comes for me, I'm going to be ready.

Kuid kui see haigus mind murda tahab, kavatsen ma selleks valmis olla.

Thank you.

Tänan teid!

(Applause)

(Aplaus)