TEDGlobal 2012
Alanna Shaikh: How I'm preparing to get Alzheimer's
Alanna Shaikh: Kako se pripremam za dobivanje Alzheimera
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Kada ste suočeni s roditeljem oboljelim od Alzheimera, većina nas reagira poricanjem ("Meni se to neće dogoditi") ili ekstremnim naporima u prevenciji. Ali Alanna Shaikh, stručnjakinja u globalnom zdravlju i TED Fellow vidi to na drugačiji način. Kreće u pripremu za trenutak kada će - ako do toga dođe - i ona sama oboljeti od Alzheimerove 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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Željela bih govoriti o svome tati.
00:18
My dad has Alzheimer's disease.
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Moj tata ima Alzheimerovu bolest.
00:20
He started showing the symptoms about 12 years ago,
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Počeo je pokazivati simptome prije 12-ak godina,
00:24
and he was officially diagnosed in 2005.
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a službena dijagnoza mu je postavljena 2005.
00:27
Now he's really pretty sick. He needs help eating,
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Sada je dosta bolestan. Treba pomoć kod jela,
00:32
he needs help getting dressed, he doesn't really know where he is
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kod oblačenja, zapravo ne zna gdje je
00:36
or when it is, and it's been really, really hard.
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ni u kojem je vremenu i vrlo, vrlo je teško.
00:40
My dad was my hero and my mentor for most of my life,
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Moj tata je bio moj heroj i moj mentor većinu mog života,
00:43
and I've spent the last decade watching him disappear.
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a prošlo desetljeće sam provela gledajući 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 tata nije sam. Ima oko 35 milijuna ljudi na svijetu koji imaju neki oblik demencije,
00:55
and by 2030 they're expecting that to double to 70 million.
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a očekuje se da će se do 2030. taj broj udvostručiti na 70 milijuna.
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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Demencija nas plaši. Zbunjena lica i drhtave ruke ljudi s demencijom,
01:08
the big numbers of people who get it, they frighten us.
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veliki broj ljudi koji je dobije, to nas plaši.
01:12
And because of that fear, we tend to do one of two things:
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I zbog tog straha obično učinimo jednu od dvije 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: "Nisam to ja, ja nemam ništa s tim, meni se to nikad neće dogoditi."
01:21
Or, we decide that we're going to prevent dementia,
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Ili, odlučimo da ćemo spriječiti 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 da se nama to nikada neće dogoditi zato što ćemo sve učiniti kako treba i neće doći i ščepati nas.
01:30
I'm looking for a third way: I'm preparing to get Alzheimer's disease.
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Ja tražim treći put: pripremam se za dobivanje Alzheimerove 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 činim sve što se može učiniti kako bih je spriječila.
01:41
I'm eating right, I'm exercising every day, I'm keeping my mind active,
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Zdravo se hranim, vježbam svakim dan, održavam svoj um aktivnim,
01:46
that's what the research says you should do.
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istraživanje kaže da biste to trebali činiti.
01:49
But the research also shows that there's nothing that will 100 percent protect you.
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Ali to istraživanje također pokazuje da ne postoji ništa što bi vas 100% zaštitilo.
01:54
If the monster wants you, the monster's gonna get you.
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Ako vas čudovište želi, čudovište će vas ščepati.
01:57
That's what happened with my dad.
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To se dogodilo mom tati.
02:00
My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
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Moj otac bio je profesor na dvojezičnom sveučilištu. Njegovi hobiji bili su šah, bridž i pisanje op-ed članaka.
02:05
(Laughter)
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(Smijeh)
02:09
He got dementia anyway.
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Ipak je dobio demenciju.
02:12
If the monster wants you, the monster's gonna get you.
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Ako vas čudovište želi, čudovište će vas ščepati.
02:14
Especially if you're me, 'cause Alzheimer's tends to run in families.
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Osobito ako ste ja zato što se Alzheimer obično javlja kod više članova u obitelji.
02:20
So I'm preparing to get Alzheimer's disease.
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Pa se pripremam za dobivanje Alzheimerove bolesti.
02:23
Based on what I've learned from taking care of my father,
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S obzirom na to što sam naučila brinući se za svoga oca
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 živjeti s demencijom, usredotočila sam 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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mijenjam ono što činim za zabavu, radim na ojačavanju svoje 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 težak dio - pokušavam postati 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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Započnimo s hobijima. Kada imate demenciju,postaje sve teže i teže uživati u sebi.
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 sjesti sa svojim starim prijateljima i dugo pričati zato što ne znate tko su oni.
02:53
It's confusing to watch television, and often very frightening.
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Zbunjujuće je gledati televiziju, a često i zastrašujuće.
02:58
And reading is just about impossible.
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A čitanje je gotovo nemoguće.
03:00
When you care for someone with dementia, and you get training,
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Kada se brinete za nekoga s demencijom i prođete obuku,
03:04
they train you to engage them in activities that are familiar, hands-on, open-ended.
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nauče vas da ih uključite u aktivnosti koje su poznate, praktične, koje nemaju ograničenja.
03:09
With my dad, that turned out to be letting him fill out forms.
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Kod mog tate je ta aktivnost bila popunjavanje obrazaca.
03:14
He was a college professor at a state school; he knows what paperwork looks like.
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Bio je sveučilišni profesor u državnoj školi; zna kako papirologija izgleda.
03:19
He'll sign his name on every line, he'll check all the boxes,
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Potpisat će se na svaku crtu, staviti kvačicu u svaki kvadratić,
03:24
he'll put numbers in where he thinks there should be numbers.
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napisat će brojeve ondje gdje misli da bi trebali biti brojevi.
03:26
But it got me thinking, what would my caregivers do with me?
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Ali to me nagnalo na razmišljanje o tome što bi moji njegovatelji mogli učiniti sa mnom.
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 kćer svog oca. Čitam, pišem, dosta razmišljam o globalnom zdravlju.
03:36
Would they give me academic journals so I could scribble in the margins?
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Bi li mi dali akademske časopise kako bih mogla piskarati po marginama?
03:40
Would they give me charts and graphs that I could color?
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Bi li mi dali grafičke prikaze i grafove koje bih mogla bojiti?
03:43
So I've been trying to learn to do things that are hands-on.
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Pa pokušavam naučiti stvari koje su praktične.
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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Uvijek sam voljela crtati pa to češće radim iako sam zbilja loša u crtanju.
03:53
I am learning some basic origami. I can make a really great box.
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Učim osnovni origami. Mogu napraviti zbilja dobru kutiju.
03:58
(Laughter)
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(Smijeh)
04:00
And I'm teaching myself to knit, which so far I can knit a blob.
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Učim plesti, ali zasad ništa ne znam isplesti.
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 važno jesam li stvarno dobra u tome. Važno je da moje ruke znaju kako to raditi.
04:12
Because the more things that are familiar, the more things my hands know how to do,
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Što više stvari koje su mi poznate, što više stvari moje ruke znaju raditi,
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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više stvari koje će me veseliti i držati zaposlenom kada moj mozak više neće biti glavni.
04:21
They say that people who are engaged in activities are happier,
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Kažu da su ljudi koji su uključeni u aktivnosti sretniji,
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 njihovim njegovateljima brinuti se za njih, a to čak može i usporiti napredak bolesti.
04:30
That all seems like win to me.
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To mi se sve čini kao pobjeda.
04:33
I want to be as happy as I can for as long as I can.
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Želim biti što sretnija koliko god dugo to mogu biti.
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 Alzheimer zapravo ima fizičke simptome,
04:40
as well as cognitive symptoms. You lose your sense of balance,
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kao i kognitivne simptome. Izgubite osjećaj za ravnotežu,
04:44
you get muscle tremors, and that tends to lead people to being less and less mobile.
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imate mišićne tremore i ljudi obično postaju sve manje i manje pokretni.
04:50
They get scared to walk around. They get scared to move.
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Strah ih je hodati uokolo. Strah ih je micati se.
04:53
So I'm doing activities that will build my sense of balance.
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Pa se bavim aktivnostima koje će poboljšati moj osjećaj 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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Bavim se jogom i tai chijem da poboljšam ravnotežu pa ću, kad je počnem gubiti,
05:01
I'll still be able to be mobile.
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i dalje biti pokretna.
05:03
I'm doing weight-bearing exercise, so that I have the muscle strength
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Radim vježbe s utezima da bih imala mišićnu snagu
05:07
so that when I start to wither, I have more time that I can still move around.
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pa kad počnem venuti, imat ću više vremena da se mogu kretati uokolo.
05:11
Finally, the third thing. I'm trying to become a better person.
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Konačno, treća stvar. Pokušavam postati 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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Moj tata je bio drag i pun ljubavi prije nego je obolio od Alzheimera, a takav je i sada.
05:21
I've seen him lose his intellect, his sense of humor, his language skills,
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Vidjela sam kako gubi svoj intelekt, smisao za humor, svoje jezične vještine,
05:26
but I've also seen this: He loves me, he loves my sons,
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ali vidjela sam i da voli mene, voli moje sinove,
05:30
he loves my brother and my mom and his caregivers.
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voli mog brata i moju mamu i svoje njegovatelje.
05:34
And that love makes us want to be around him, even now.
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I zbog toga želimo biti s njim, čak i sada,
05:39
even when it's so hard.
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čak i kada je tako teško.
05:40
When you take away everything that he ever learned in this world,
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Kada oduzmete sve što je ikad naučio na ovom svijetu,
05:44
his naked heart still shines.
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njegovo golo srce još uvijek sjaji.
05:46
I was never as kind as my dad, and I was never as loving.
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Nikad nisam bila draga kao moj tata, niti sam ikad bila puna ljubavi.
05:50
And what I need now is to learn to be like that.
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A sada trebam naučiti biti takva.
05:53
I need a heart so pure that if it's stripped bare by dementia, it will survive.
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Trebam srce tako čisto da preživi ako bude ogoljeno demencijom.
05:58
I don't want to get Alzheimer's disease.
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Ne želim oboljeti od Alzheimerove bolesti.
06:01
What I want is a cure in the next 20 years, soon enough to protect me.
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Želim lijek u sljedećih 20 godina, dovoljno brzo 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, bit ću spremna.
06:08
Thank you.
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Hvala.
06:10
(Applause)
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(Pljesak)
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