TEDGlobal 2012
Alanna Shaikh: How I'm preparing to get Alzheimer's
Alanna Shaikh: Ako sa pripravujem na Alzheimera
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Keď vidíme našich rodičov, ako trpia Alzheimerom, reakciou väčšiny z nás je odmietanie („Mne sa to nestane.") alebo vyvíjame nesmierne úsilie chorobe predísť. No expertka na globálne zdravie a členka TED Alanna Shaikh to vidí inak. Podniká tri kroky, aby sa pripravila na ten moment - ak príde - keď ju Alzheimer postihne.
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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Rada by som vám porozprávala o mojom otcovi.
00:18
My dad has Alzheimer's disease.
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Môj otec má Alzheimerovu chorobu.
00:20
He started showing the symptoms about 12 years ago,
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Pred 12 rokmi začal prejavovať príznaky choroby
00:24
and he was officially diagnosed in 2005.
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a oficiálne mu ju diagnostikovali v roku 2005.
00:27
Now he's really pretty sick. He needs help eating,
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Teraz je už na tom naozaj zle. Potrebuje pomoc pri jedení,
00:32
he needs help getting dressed, he doesn't really know where he is
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pomoc pri obliekaní, v skutočnosti ani nevie, kde, ani
00:36
or when it is, and it's been really, really hard.
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v akom čase sa nachádza. Je to naozaj veľmi ťažké.
00:40
My dad was my hero and my mentor for most of my life,
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Môj otec mi bol hrdinom a učiteľom väčšinu života
00:43
and I've spent the last decade watching him disappear.
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a už je to 10 rokov, čo vidím, ako mi mizne pred očami.
00:47
My dad's not alone. There's about 35 million people globally living with some kind of dementia,
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Otec v tom nie je sám. Po celom svete žije 35 miliónov ľudí s nejakým druhom demencie
00:55
and by 2030 they're expecting that to double to 70 million.
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a očakáva sa, že do roku 2030 sa počet zdvojnásobí na 70 miliónov.
00:59
That's a lot of people.
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To je už veľmi veľa ľudí.
01:01
Dementia scares us. The confused faces and shaky hands of people who have dementia,
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Demencia nás desí. Zmätené tváre a roztrasené ruky ľudí s demenciou,
01:08
the big numbers of people who get it, they frighten us.
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veľké množstvo postihnutých ľudí, to všetko nám naháňa strach.
01:12
And because of that fear, we tend to do one of two things:
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A zo strachu sa zvyčajne uchyľujeme k jednej z týchto dvoch vecí:
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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Popierame: „Mňa sa to netýka, so mnou to nemá nič spoločné, nikdy sa mi to nestane."
01:21
Or, we decide that we're going to prevent dementia,
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Alebo sa rozhodneme demencii predchádzať
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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a nikdy ju nedostaneme, pretože urobíme všetko správne, nepríde a nedostane nás.
01:30
I'm looking for a third way: I'm preparing to get Alzheimer's disease.
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Ja hľadám tretiu možnosť: Pripravujem sa na Alzheimerovu chorobu.
01:35
Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.
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Prevencia je dobrá a robím všetko, aby som sa Alzheimerovi vyhla.
01:41
I'm eating right, I'm exercising every day, I'm keeping my mind active,
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Správne sa stravujem, každý deň cvičím, udržiavam si aktívnu myseľ,
01:46
that's what the research says you should do.
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čo aj odporúčajú výsledky výskumu.
01:49
But the research also shows that there's nothing that will 100 percent protect you.
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No podľa výskumu neexistuje nič, čo by vás ochránilo na 100%.
01:54
If the monster wants you, the monster's gonna get you.
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Ak vás monštrum chce, monštrum vás aj dostane.
01:57
That's what happened with my dad.
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To sa stalo môjmu otcovi.
02:00
My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
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Otec bol vysokoškolský učiteľ. Bol bilingválny a jeho záľubami boli šach, bridž a písanie stĺpčekov do novín.
02:05
(Laughter)
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(Smiech)
02:09
He got dementia anyway.
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Aj napriek tomu ho postihla demencia.
02:12
If the monster wants you, the monster's gonna get you.
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Ak vás monštrum chce, monštrum vás aj dostane.
02:14
Especially if you're me, 'cause Alzheimer's tends to run in families.
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Najmä v mojom prípade, pretože Alzheimer je dedičná choroba.
02:20
So I'm preparing to get Alzheimer's disease.
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A tak sa na Alzheimera pripravujem.
02:23
Based on what I've learned from taking care of my father,
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Podľa toho, čo som sa naučila pri starostlivosti o otca
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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a z vyhľadávania, aké je to žiť s demenciou, zamerala som sa v príprave na tri veci:
02:31
I'm changing what I do for fun, I'm working to build my physical strength,
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Mením veci, ktoré robím pre zábavu, snažím sa vybudovať si fyzickú silu
02:37
and -- this is the hard one -- I'm trying to become a better person.
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a - toto je najťažšie - snažím sa stať lepším človekom.
02:43
Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.
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Začnime so záľubami. Keď vás postihne demencia, je stále ťažšie a ťažšie zabaviť sa.
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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Nemôžete sa dobre porozprávať so starými priateľmi, pretože ani neviete, kto vlastne sú.
02:53
It's confusing to watch television, and often very frightening.
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Pozeranie televízie vás mätie a často až naháňa strach.
02:58
And reading is just about impossible.
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A čítanie je takmer nemožné.
03:00
When you care for someone with dementia, and you get training,
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Keď sa staráte o niekoho s demenciou, dostanete školenie,
03:04
they train you to engage them in activities that are familiar, hands-on, open-ended.
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na ktorom vám vysvetlia, že ich treba zapájať do známych ručných prác bez stanoveného konca.
03:09
With my dad, that turned out to be letting him fill out forms.
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U môjho otca to bolo vypĺňanie formulárov.
03:14
He was a college professor at a state school; he knows what paperwork looks like.
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Bol učiteľom na verejnej vysokej škole. Vie, ako vyzerajú papierovačky.
03:19
He'll sign his name on every line, he'll check all the boxes,
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Nad každú čiaru sa podpíše, zaškrtne všetky políčka,
03:24
he'll put numbers in where he thinks there should be numbers.
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napíše čísla tam, kde si myslí, že patria.
03:26
But it got me thinking, what would my caregivers do with me?
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No prinútilo ma to zamyslieť sa, čo by robili so mnou opatrovatelia?
03:30
I'm my father's daughter. I read, I write, I think about global health a lot.
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Som dcéra môjho otca. Čítam, píšem, veľa premýšľam o globálnom zdraví.
03:36
Would they give me academic journals so I could scribble in the margins?
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Dali by mi vedecké časopisy, aby som mohla čmárať poznámky do okrajov?
03:40
Would they give me charts and graphs that I could color?
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Dali by mi tabuľky a grafy na vymaľovanie?
03:43
So I've been trying to learn to do things that are hands-on.
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Tak preto sa snažím priučiť manuálnym činnostiam.
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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Vždy som rada kreslila, a tak kreslím ešte viac, hoci mi to veľmi nejde.
03:53
I am learning some basic origami. I can make a really great box.
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Učím sa základné origami. Viem spraviť fakt dobrú krabicu.
03:58
(Laughter)
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(Smiech)
04:00
And I'm teaching myself to knit, which so far I can knit a blob.
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Učím sa aj pliecť a už viem upliecť guľôčku.
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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Viete, nezáleží na tom, či mi to ide, alebo nie. Dôležité je, že moje ruky vedia ako na to.
04:12
Because the more things that are familiar, the more things my hands know how to do,
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Lebo, ak mi je viac veci známych, moje ruky budú vedieť urobiť viac vecí,
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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aby som mohla byť šťastná a mala čo robiť, keď už môj mozog nebude mať všetko pod kontrolou.
04:21
They say that people who are engaged in activities are happier,
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Hovorí sa, že ľudia, ktorí sa zapájajú do rôznych druhov aktivít sú šťastnejší,
04:25
easier for their caregivers to look after, and it may even slow the progress of the disease.
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opatrovateľom sa o nich stará ľahšie a dokonca môžu spomaliť priebeh choroby.
04:30
That all seems like win to me.
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To všetko znamená pre mňa už víťazstvo.
04:33
I want to be as happy as I can for as long as I can.
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Chcem byť šťastná, ako len môžem, a tak dlho, ako sa len dá.
04:36
A lot of people don't know that Alzheimer's actually has physical symptoms,
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Mnoho ľudí nevie, že Alzheimer má fyzické ako aj
04:40
as well as cognitive symptoms. You lose your sense of balance,
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duševné príznaky. Strácate zmysel pre rovnováhu,
04:44
you get muscle tremors, and that tends to lead people to being less and less mobile.
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postihuje vás triaška a to zvyčajne vedie ľudí k zníženej pohyblivosti.
04:50
They get scared to walk around. They get scared to move.
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Boja sa prechádzať. Boja sa hýbať.
04:53
So I'm doing activities that will build my sense of balance.
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A preto sa venujem takým činnostiam, ktoré mi vybudujú lepší zmysel pre rovnováhu.
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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Robím jogu a tai chi na zlepšenie rovnováhy, aby som bola dlhšie mobilná,
05:01
I'll still be able to be mobile.
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keď už začnem strácať rovnováhu.
05:03
I'm doing weight-bearing exercise, so that I have the muscle strength
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Robím silové cvičenia na získanie sily,
05:07
so that when I start to wither, I have more time that I can still move around.
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aby mi zostalo viac času na pohyb, keď už začnem slabnúť.
05:11
Finally, the third thing. I'm trying to become a better person.
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A konečne tá tretia vec. Snažím sa stať lepším človekom.
05:16
My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.
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Pred Alzheimerom bol môj otec láskavým a milujúcim človekom - a takým je aj teraz.
05:21
I've seen him lose his intellect, his sense of humor, his language skills,
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Videla som ho, ako strácal intelekt, zmysel pre humor, jazykové schopnosti,
05:26
but I've also seen this: He loves me, he loves my sons,
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ale vidím aj toto: Miluje ma, miluje mojich synov,
05:30
he loves my brother and my mom and his caregivers.
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miluje môjho brata a mamu a aj svojich opatrovateľov.
05:34
And that love makes us want to be around him, even now.
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A kvôli jeho láske chceme byť s ním aj teraz.
05:39
even when it's so hard.
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Aj teraz, keď je to také ťažké.
05:40
When you take away everything that he ever learned in this world,
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Aj keď mu zoberiete všetko, čo sa na tomto svete naučil,
05:44
his naked heart still shines.
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jeho nahé srdce stále žiari.
05:46
I was never as kind as my dad, and I was never as loving.
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Nikdy som nebola taká láskavá ako môj otec, a ani taká milujúca.
05:50
And what I need now is to learn to be like that.
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Čo potrebujem teraz, je naučiť sa byť práve takou.
05:53
I need a heart so pure that if it's stripped bare by dementia, it will survive.
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Moje srdce musí byť také čisté, aby prežilo, ak ho demencia vyzlečie donaha.
05:58
I don't want to get Alzheimer's disease.
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Nechcem dostať Alzheimerovu chorobu.
06:01
What I want is a cure in the next 20 years, soon enough to protect me.
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Čo chcem, je liek vynájdený v najbližších 20 rokoch, včas na to, aby ma ochránil.
06:05
But if it comes for me, I'm going to be ready.
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No ak si po mňa príde, budem pripravená.
06:08
Thank you.
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Ďakujem.
06:10
(Applause)
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(Potlesk)
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