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

118,736 views ・ 2012-07-03

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Please double-click on the English subtitles below to play the video.

00:00
Translator: Morton Bast Reviewer: Thu-Huong Ha
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Prevodilac: Tereza Ivanovic Lektor: Ivana Korom
00:16
I'd like to talk about my dad.
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Volela bih da pričam o svom ocu.
00:17
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,
00:23
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,
00:31
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
00:35
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.
00:39
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
00:42
and I've spent the last decade watching him disappear.
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i u zadnjih deset godina posmatram ga kako nestaje.
00:46
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
00:54
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,
01:07
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.
01:11
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:
01:15
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
01:24
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.
01:29
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.
01:40
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.
01:48
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.
01:53
If the monster wants you, the monster's gonna get you.
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Ako vas to čudovište želi, doći će po vas.
01:56
That's what happened with my dad.
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To se dogodilo mom ocu.
01:59
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.
02:11
If the monster wants you, the monster's gonna get you.
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Ako vas čudovište želi, ščepaće vas.
02:13
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.
02:19
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:
02:30
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
02:36
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.
02:57
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,
03:03
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.
03:13
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,
03:23
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.
03:35
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?
03:39
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?
03:42
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.
03:52
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.
04:11
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,
04:15
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.
04:20
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.
04:29
That all seems like win to me.
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Ovo mi zvuči kao pobeda.
04:32
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.
04:35
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
04:39
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.
04:49
They get scared to walk around. They get scared to move.
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Plaše se da prošetaju. Plaše se da se kreću.
04:52
So I'm doing activities that will build my sense of balance.
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Zato ja radim na poboljšanju osećaja za ravnotežu.
04:55
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,
05:00
I'll still be able to be mobile.
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ipak bila u stanju da se krećem.
05:02
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
05:06
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.
05:10
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.
05:20
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,
05:25
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.
05:33
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,
05:38
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
05:43
his naked heart still shines.
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još uvek nas obasjava njegovo ogoljeno srce.
05:45
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.
05:49
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.
05:52
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.
06:00
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.
06:04
But if it comes for me, I'm going to be ready.
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Ali ako dođe po mene, biću spremna.
06:07
Thank you.
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Hvala.
06:09
(Applause)
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( Aplauz)
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