TEDGlobal 2012
Alanna Shaikh: How I'm preparing to get Alzheimer's
Alana Šaik (Alanna Shaikh): Kako se spremam za Alchajmerovu bolest
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Kada smo suočeni sa roditeljem koji pati od Alchajmerove bolesti, većina odgovara poricanjem ("meni se to neće desiti") ili ekstremnim naporima za sprečavanje bolesti. Ali stručnjak za svetsko zdravlje i TED Fellow Alana Šaik vidi to drugačije. Ona preduzima tri konkretna koraka da se spremi za taj momenat - ako dođe - kada i sama bude obolela od Alchajmerove bolesti.
Alanna Shaikh - Global health and development specialist
Global development expert Alanna Shaikh takes on the toughest of health issues—from the ones affecting the globe at large to the ones hurting her own family. Full bio
Global development expert Alanna Shaikh takes on the toughest of health issues—from the ones affecting the globe at large to the ones hurting her own family. Full bio
Double-click the English transcript below to play the video.
00:16
I'd like to talk about my dad.
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Volela bih da pričam o svom ocu.
00:18
My dad has Alzheimer's disease.
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Moj otac ima Alchajmerovu bolest.
00:20
He started showing the symptoms about 12 years ago,
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Prvi simptomi su se pokazali pre 12 godina,
00:24
and he was officially diagnosed in 2005.
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a dijagnoza je postavljena 2005. godine.
00:27
Now he's really pretty sick. He needs help eating,
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Sada je moj otac prilično bolestan. Potrebna mu je pomoć kad jede,
00:32
he needs help getting dressed, he doesn't really know where he is
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kada se oblači, ne shvata gde se zaista nalazi
00:36
or when it is, and it's been really, really hard.
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ili koje je doba i zaista je jako, jako teško.
00:40
My dad was my hero and my mentor for most of my life,
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U mom životu otac mi je bio i junak i mentor
00:43
and I've spent the last decade watching him disappear.
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i u zadnjih deset godina posmatram ga kako nestaje.
00:47
My dad's not alone. There's about 35 million people globally living with some kind of dementia,
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Moj otac nije usamljeni slučaj. Oko 35 miliona ljudi na svetu živi sa nekom vrstom demencije
00:55
and by 2030 they're expecting that to double to 70 million.
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i očekuje se da će se broj udvostručiti na 70 miliona ljudi do 2030.
00:59
That's a lot of people.
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To je mnogo ljudi.
01:01
Dementia scares us. The confused faces and shaky hands of people who have dementia,
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Plaši nas demencija. Zbunjena lica i drhtave ruke ljudi koji pate od demencije,
01:08
the big numbers of people who get it, they frighten us.
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veliki broj ljudi koji od nje oboli, zaista nas zastrašuje.
01:12
And because of that fear, we tend to do one of two things:
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Zbog tog straha, činimo nešto od ove dve stvari:
01:16
We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me."
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poričemo: "Ovo nisam ja, ovo nema veze sa mnom, ovo mi se nikad neće desiti."
01:21
Or, we decide that we're going to prevent dementia,
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Ili rešimo da ćemo sprečiti demenciju
01:25
and it will never happen to us because we're going to do everything right and it won't come and get us.
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i ona nam se nikad neće desiti jer ćemo sve uraditi kako treba i ona nas neće uzeti pod svoje.
01:30
I'm looking for a third way: I'm preparing to get Alzheimer's disease.
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Ja tražim neki treći način: spremam se da obolim od Alchajmerove bolesti.
01:35
Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.
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Prevencija je dobra i ja činim sve što može da spreči Alchajmerovu bolest.
01:41
I'm eating right, I'm exercising every day, I'm keeping my mind active,
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Hranim se pravilno, vežbam svakodnevno, održavam svoj um aktivnim.
01:46
that's what the research says you should do.
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Po istraživanjima sve ovo bi trebalo da se radi.
01:49
But the research also shows that there's nothing that will 100 percent protect you.
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Ali istraživanja takođe pokazuju da ne postoji ništa što će vas 100 posto zaštititi.
01:54
If the monster wants you, the monster's gonna get you.
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Ako vas to čudovište želi, doći će po vas.
01:57
That's what happened with my dad.
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To se dogodilo mom ocu.
02:00
My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
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Moj otac je bio profesor, dvojezični. Hobi mu je bio šah, bridž i pisanje komentara u novinama.
02:05
(Laughter)
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(Smeh)
02:09
He got dementia anyway.
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Pa ipak je oboleo od demencije.
02:12
If the monster wants you, the monster's gonna get you.
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Ako vas čudovište želi, ščepaće vas.
02:14
Especially if you're me, 'cause Alzheimer's tends to run in families.
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Naročito ako ste ja, jer Alchajmerova bolest teži da se prenosi porodično.
02:20
So I'm preparing to get Alzheimer's disease.
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Zato se spremam da i ja obolim od Alchajmerove bolesti.
02:23
Based on what I've learned from taking care of my father,
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Na osnovu toga što sam saznala brinući o svom ocu,
02:25
and researching what it's like to live with dementia, I'm focusing on three things in my preparation:
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i istražujući kako je to živeti sa demencijom, fokusiram se na tri stvari u svojoj pripremi:
02:31
I'm changing what I do for fun, I'm working to build my physical strength,
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menjam način zabave, radim na jačanju fizičke snage
02:37
and -- this is the hard one -- I'm trying to become a better person.
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i - ovo je najteže - pokušavam da budem bolja osoba.
02:43
Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.
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Da krenemo sa hobijem. Kad ste dementni, postaje sve teže i teže da uživate.
02:49
You can't sit and have long talks with your old friends, because you don't know who they are.
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Ne možete sesti i dugo razgovarati sa starim prijateljima, jer ne znate ko su.
02:53
It's confusing to watch television, and often very frightening.
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Gledanje televizije vas zbunjuje i plaši.
02:58
And reading is just about impossible.
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Čitati je skoro nemoguće.
03:00
When you care for someone with dementia, and you get training,
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Kada vodite računa o nekom ko je oboleo i obučavate se za to,
03:04
they train you to engage them in activities that are familiar, hands-on, open-ended.
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uče vas da ga uposlite aktivnostima koje su mu dobro poznate, upošljavaju ruke i nisu teške.
03:09
With my dad, that turned out to be letting him fill out forms.
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Što se tiče tate, davali smo mu da popunjava formulare.
03:14
He was a college professor at a state school; he knows what paperwork looks like.
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Bio je profesor u državnoj školi, dobro je poznavao papirologiju.
03:19
He'll sign his name on every line, he'll check all the boxes,
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Potpisivao bi se na svaku liniju, štriklirao je kvadratiće,
03:24
he'll put numbers in where he thinks there should be numbers.
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pisao bi brojeve gde god bi mislio da treba da budu.
03:26
But it got me thinking, what would my caregivers do with me?
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To me je nateralo da razmišljam šta bi sa mnom radili oni koji bi o meni brinuli?
03:30
I'm my father's daughter. I read, I write, I think about global health a lot.
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Ja sam tatina ćerka. Čitam, pišem, razmišljam mnogo o zdravlju.
03:36
Would they give me academic journals so I could scribble in the margins?
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Da li će mi dati stručne časopise da škrabam po marginama?
03:40
Would they give me charts and graphs that I could color?
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Da li će mi dati tabele i grafikone da ih bojim?
03:43
So I've been trying to learn to do things that are hands-on.
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Zato pokušavam da naučim da radim nešto rukama.
03:47
I've always liked to draw, so I'm doing it more even though I'm really very bad at it.
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Uvek sam volela da crtam, sada crtam još više, mada to zaista loše radim.
03:53
I am learning some basic origami. I can make a really great box.
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Učim osnove origamija. Znam da napravim stvarno sjajnu kutiju.
03:58
(Laughter)
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(Smeh)
04:00
And I'm teaching myself to knit, which so far I can knit a blob.
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Učim da pletem, do sad sam naučila da ispletem grudvicu.
04:07
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.
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Ali, znate, nije bitno da li sam dobra u tome. Bitno je da ruke znaju kako to treba raditi.
04:12
Because the more things that are familiar, the more things my hands know how to do,
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Jer što više stvari znam, moje ruke će znati više kako to da urade,
04:16
the more things that I can be happy and busy doing when my brain's not running the show anymore.
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biće više stvari koje će me usrećiti i zaposliti onda, kada mi mozak više neće funkcionisati kao pre.
04:21
They say that people who are engaged in activities are happier,
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Kažu da su zauzeti ljudi srećniji,
04:25
easier for their caregivers to look after, and it may even slow the progress of the disease.
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lakše je voditi brigu o njima, čak može i da se uspori napredovanje bolesti.
04:30
That all seems like win to me.
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Ovo mi zvuči kao pobeda.
04:33
I want to be as happy as I can for as long as I can.
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Želim da budem srećna koliko god mogu.
04:36
A lot of people don't know that Alzheimer's actually has physical symptoms,
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Mnogo ljudi ne zna da Alchajmerova bolest ima u stvari fizičke
04:40
as well as cognitive symptoms. You lose your sense of balance,
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kao i kognitivne simptome. Gubite osećaj za ravnotežu
04:44
you get muscle tremors, and that tends to lead people to being less and less mobile.
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mišići vam drhte i to dovodi do toga da su ljudi sve manje pokretni.
04:50
They get scared to walk around. They get scared to move.
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Plaše se da prošetaju. Plaše se da se kreću.
04:53
So I'm doing activities that will build my sense of balance.
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Zato ja radim na poboljšanju osećaja za ravnotežu.
04:56
I'm doing yoga and tai chi to improve my balance, so that when I start to lose it,
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Vežbam jogu i tai či da poboljšam ravnotežu,
da bih, kada počnem da je gubim,
da bih, kada počnem da je gubim,
05:01
I'll still be able to be mobile.
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ipak bila u stanju da se krećem.
05:03
I'm doing weight-bearing exercise, so that I have the muscle strength
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Vežbam nošenje tereta, da bih imala snagu u mišićima
05:07
so that when I start to wither, I have more time that I can still move around.
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da bih, kada budem slabija, ipak mogla da se krećem.
05:11
Finally, the third thing. I'm trying to become a better person.
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Konačno, i treća stvar. Pokušavam da budem bolja osoba.
05:16
My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.
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Tata mi je bio blag i pun ljubavi i pre Alchajmera, a takav je i sad.
05:21
I've seen him lose his intellect, his sense of humor, his language skills,
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Vidim kako gubi svoju mentalnu snagu, duhovitost, jezičke veštine,
05:26
but I've also seen this: He loves me, he loves my sons,
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ali vidim i ovo: voli mene i moje sinove
05:30
he loves my brother and my mom and his caregivers.
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voli mog brata i mamu i one koji brinu o njemu.
05:34
And that love makes us want to be around him, even now.
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Zbog te ljubavi želimo da budemo sa njim i sada,
05:39
even when it's so hard.
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mada je toliko teško.
05:40
When you take away everything that he ever learned in this world,
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Kada mu oduzmete sve što je na ovom svetu naučio
05:44
his naked heart still shines.
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još uvek nas obasjava njegovo ogoljeno srce.
05:46
I was never as kind as my dad, and I was never as loving.
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Nikad nisam bila toliko brižna i puna ljubavi kao tata.
05:50
And what I need now is to learn to be like that.
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I sad je potrebno na naučim da budem takva.
05:53
I need a heart so pure that if it's stripped bare by dementia, it will survive.
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Treba mi takvo čisto srce, koje će preživeti iako je ogoljeno demencijom.
05:58
I don't want to get Alzheimer's disease.
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Ne želim da obolim od Alchajmerove bolesti.
06:01
What I want is a cure in the next 20 years, soon enough to protect me.
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Ono što želim je lek u sledećih 20 godina, dovoljno skoro da me zaštiti.
06:05
But if it comes for me, I'm going to be ready.
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Ali ako dođe po mene, biću spremna.
06:08
Thank you.
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Hvala.
06:10
(Applause)
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( Aplauz)
ABOUT THE SPEAKER
Alanna Shaikh - Global health and development specialistGlobal development expert Alanna Shaikh takes on the toughest of health issues—from the ones affecting the globe at large to the ones hurting her own family.
Why you should listen
TED Fellow Alanna Shaikh is a global health and development specilist with a vendetta against jargon. On her blog, Blood and Milk, she aims to make global development issues both accessible and understandable. In her TED Book, What's Killing Us, she explains the biggest challenges in global wellness -- from HIV/AIDS to the diminishing effectiveness of antibiotics -- in a way that anyone can understand. Earlier this year, she co-founded AidSource, a social network for aid workers. She is also the co-founder of the group SMART Aid, which educates donors and start-up projects about international aid.
Alanna Shaikh is especially interested in Alzheimer's, as she has watched her father deteriorate from the disease over the past 12 years. But she says the experience has not sent her into denial—she plans to be prepared for the genetically transmitted disease, should it ever arrive.
Alanna Shaikh | Speaker | TED.com