TEDGlobal 2012
Alanna Shaikh: How I'm preparing to get Alzheimer's
Alanna Shaikh: Kaip aš ruošiuosi susirgti Alzheimeriu
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Susidūrę su Alzheimerio liga sergančiu tėvu daugelis mūsų atsako neigimu ("Tai man nenutiks") arba didžiausiomis pastangomis užkirsti ligai kelią. Tačiau visuotinės sveikatos ekspertė ir TED Fellow Alanna Shaikh turi kitokį požiūrį. Ji žengia tris konkrečius žingsnius tam, kad pasiruoštų momentui (jei jis ateis), kai pati susirgs Alzeimerio liga.
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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Norėčiau pakalbėti apie savo tėtį.
00:18
My dad has Alzheimer's disease.
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Mano tėtis serga Alzheimerio liga.
00:20
He started showing the symptoms about 12 years ago,
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Simptomai pasirodė prieš daugmaž 12 metų
00:24
and he was officially diagnosed in 2005.
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ir liga buvo oficialiai diagnozuota 2005-aisiais.
00:27
Now he's really pretty sick. He needs help eating,
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Dabar jis sunkiai serga. Jam reikia padėti valgyti,
00:32
he needs help getting dressed, he doesn't really know where he is
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jam reikia pagalbos apsirengti, jis nežino, kur jis yra
00:36
or when it is, and it's been really, really hard.
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ar koks dabar laikas. Ir tai tikrai labai sunku.
00:40
My dad was my hero and my mentor for most of my life,
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Mano tėtis didžiąją gyvenimo dalį buvo mano didvyris ir mokytojas,
00:43
and I've spent the last decade watching him disappear.
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o paskutinį dešimtmetį aš matau jį nykstantį.
00:47
My dad's not alone. There's about 35 million people globally living with some kind of dementia,
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Mano tėtis ne vienas. Apie 35 mln. žmonių pasaulyje serga vienos ar kitos rūšies silpnaprotyste
00:55
and by 2030 they're expecting that to double to 70 million.
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ir manoma, jog iki 2030 šis skaičius padvigubės iki 70 mln.
00:59
That's a lot of people.
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Tai daugybė žmonių.
01:01
Dementia scares us. The confused faces and shaky hands of people who have dementia,
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Silpnaprotystė mus gąsdina. Pasimetę sergančiųjų veidai ir drebančios rankos,
01:08
the big numbers of people who get it, they frighten us.
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dideli skaičiai susergančiųjų mus baugina.
01:12
And because of that fear, we tend to do one of two things:
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Dėl šios baimės mes linkę daryti vieną iš dviejų dalykų:
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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Arba puolame neigti: "Tai ne aš, aš niekuo dėtas, tai niekada man nenutiks."
01:21
Or, we decide that we're going to prevent dementia,
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Arba nusprendžiame užkirsti silpnaprotystei kelią,
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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ir niekada nesusirgsime, nes viską darome teisingai ir ji mūsų nepasiglemš.
01:30
I'm looking for a third way: I'm preparing to get Alzheimer's disease.
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Aš ieškau trečio kelio: aš ruošiuosi susirgti Alzheimeriu.
01:35
Prevention is good, and I'm doing the things that you can do to prevent Alzheimer's.
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Prevencija gerai, ir aš darau, tai kas gali užkirsti kelią Alzheimerio ligai.
01:41
I'm eating right, I'm exercising every day, I'm keeping my mind active,
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Aš teisingai maitinuosi, kasdien sportuoju, palaikau protą aktyvų;
01:46
that's what the research says you should do.
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tyrimai rodo, kad taip reikia elgtis.
01:49
But the research also shows that there's nothing that will 100 percent protect you.
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Bet taip pat tyrimai rodo, kad niekas negali 100% tavęs apsaugoti.
01:54
If the monster wants you, the monster's gonna get you.
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Jei pabaisa tavęs nori, pabaisa tave gaus.
01:57
That's what happened with my dad.
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Taip nutiko mano tėčiui.
02:00
My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.
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Mano tėtis buvo dvikalbis koledžo profesorius. Jo hobiai buvo šachmatai, bridžas ir savo nuomonės reiškimas straipsniuose.
02:05
(Laughter)
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(Juokas)
02:09
He got dementia anyway.
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Jis vis tiek susirgo silpnaprotyste.
02:12
If the monster wants you, the monster's gonna get you.
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Jei pabaisa tavęs nori, pabaisa tave gaus.
02:14
Especially if you're me, 'cause Alzheimer's tends to run in families.
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Ypač, jei esi aš, nes Alzheimeris - šeiminė liga.
02:20
So I'm preparing to get Alzheimer's disease.
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Todėl aš ruošiuosi susirgti Alzheimeriu.
02:23
Based on what I've learned from taking care of my father,
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Remdamasi tuo, ką išmokau rūpindamasi tėvu
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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ir domėdamasi, ką reiškia sirgti silpnaprotyste, koncentruojuosi į tris dalykus savo pasiruošime:
02:31
I'm changing what I do for fun, I'm working to build my physical strength,
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keičiu savo laisvalaikio užsiėmimus, sportuoju, kad tapčiau fiziškai stipresnė
02:37
and -- this is the hard one -- I'm trying to become a better person.
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ir -- šitas sunkus -- stengiuosi tapti geresniu žmogumi.
02:43
Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.
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Pradėkime nuo hobių. Kai susergi silpnaprotyste, tampa sunkiau mėgautis veikla.
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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Negali sėdėti ir ilgai plepėti su senais bičiuliais, nes nežinai, kas jie tokie.
02:53
It's confusing to watch television, and often very frightening.
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Televizijos žiūrėjimas tampa sudėtingas ir dažnai labai bauginantis.
02:58
And reading is just about impossible.
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Ir skaitymas beveik neįmanomas.
03:00
When you care for someone with dementia, and you get training,
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Kai rūpiniesi kuo nors, sergančiu silpnaprotyste, ir gauni apmokymus,
03:04
they train you to engage them in activities that are familiar, hands-on, open-ended.
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tave moko užimti juos pažįstama, praktiška, neterminuota veikla.
03:09
With my dad, that turned out to be letting him fill out forms.
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Paaiškėjo, kad mano tėčiui tai formų pildymas.
03:14
He was a college professor at a state school; he knows what paperwork looks like.
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Jis buvo koledžo profesorius valstybinėje mokykloje; jis žino, kas tai yra darbas su dokumentais,
03:19
He'll sign his name on every line, he'll check all the boxes,
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Jis pasirašo savo vardą kiekvienoje eilutėje, pažymi visus langelius,
03:24
he'll put numbers in where he thinks there should be numbers.
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įrašo skaičius, kur, jam atrodo, turėtų būti skaičiai.
03:26
But it got me thinking, what would my caregivers do with me?
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Bet aš pradėjau galvoti, ką su manimi darys mano slaugytojai?
03:30
I'm my father's daughter. I read, I write, I think about global health a lot.
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Aš tėčio dukra. Aš skaitau, rašau, daug galvoju apie visuotinę sveikatą.
03:36
Would they give me academic journals so I could scribble in the margins?
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Ar jie man duos mokslinius žurnalus, kad galėčiau keverzoti paraštėse?
03:40
Would they give me charts and graphs that I could color?
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Ar jie duos man lenteles ir grafikuos, kuriuos galėčiau nuspalvinti?
03:43
So I've been trying to learn to do things that are hands-on.
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Todėl pradėjau stengtis išmokti praktinių užsiėmimų.
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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Visada mėgau piešti, todėl dabar darau tai dažniau, nors man ir nesiseka.
03:53
I am learning some basic origami. I can make a really great box.
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Mokausi elementaraus origamio. Galiu padaryti tikrai puikią dėžutę.
03:58
(Laughter)
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(Juokas)
04:00
And I'm teaching myself to knit, which so far I can knit a blob.
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Ir mokausi mezgimo; jau galiu numegzti skiautelę.
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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Bet, žinote, nesvarbu, ar man tai sekasi. Svarbu, kad mano rankos žino, kaip tai daryti.
04:12
Because the more things that are familiar, the more things my hands know how to do,
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Nes kuo daugiau užsiėmimų yra pažįstami, kuo daugiau mano rankos moka daryti,
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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tuo daugiau veiklų galėsiu laimingai užsiimti, kai mano smegenys nebevadovaus paradui.
04:21
They say that people who are engaged in activities are happier,
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Sakoma, jog turintys veiklos žmonės yra laimingesni,
04:25
easier for their caregivers to look after, and it may even slow the progress of the disease.
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jais lengviau rūpintis ir tai netgi gali pristabdyti ligos progresavimą.
04:30
That all seems like win to me.
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Visa tai man atrodo kaip laimėjimai.
04:33
I want to be as happy as I can for as long as I can.
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Noriu būti kuo laimingesnė kaip įmanoma ilgiau.
04:36
A lot of people don't know that Alzheimer's actually has physical symptoms,
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Daug žmonių nežino, kad Alzheimeris turi ir fizinių,
04:40
as well as cognitive symptoms. You lose your sense of balance,
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ne tik psichinių simptomų. Gali prarasti pusiausvyrą,
04:44
you get muscle tremors, and that tends to lead people to being less and less mobile.
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raumenys gali drebėti ir tai lemia, kad žmonės vis mažiau ir mažiau juda.
04:50
They get scared to walk around. They get scared to move.
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Jie įsibaimina vaikščioti. Jie įsibaimina judėti.
04:53
So I'm doing activities that will build my sense of balance.
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Todėl užsiimu veikla, kuri sustiprins mano pusiausvyros pojūtį.
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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Užsiimu joga ir Tai Či, kad pagerinčiau pusiausvyrą, tad kai imsiu jos netekti,
05:01
I'll still be able to be mobile.
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vis dar galėsiu judėti.
05:03
I'm doing weight-bearing exercise, so that I have the muscle strength
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Kilnoju sunkumas, kad turėčiau raumenų jėgos,
05:07
so that when I start to wither, I have more time that I can still move around.
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tad kai pradėsiu silpnėti, galėsiu ilgiau judėti.
05:11
Finally, the third thing. I'm trying to become a better person.
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Galiausiai, trečiasis dalykas. Stengiuosi tapti geresniu žmogumi.
05:16
My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.
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Mano tėtis buvo malonus ir mylintis prieš susirgdamas Alzheimeriu, ir jis yra malonus ir mylintis dabar.
05:21
I've seen him lose his intellect, his sense of humor, his language skills,
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Mačiau jį prarandantį intelektą, humoro jausmą, kalbos įgūdžius,
05:26
but I've also seen this: He loves me, he loves my sons,
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bet taip pat mačiau štai ką: jis myli mane, mano sūnus,
05:30
he loves my brother and my mom and his caregivers.
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mano brolį ir mamą ir jo slaugytojus.
05:34
And that love makes us want to be around him, even now.
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Ir ta meilė verčia mus norėti būti su juo net ir dabar.
05:39
even when it's so hard.
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net ir kai taip sunku.
05:40
When you take away everything that he ever learned in this world,
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Kai atimi viską, ko jis išmoko šiame pasaulyje,
05:44
his naked heart still shines.
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jo nuoga širdis vis tiek švyti.
05:46
I was never as kind as my dad, and I was never as loving.
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Niekada nebuvau tokia maloni ir mylinti kaip tėtis.
05:50
And what I need now is to learn to be like that.
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Ir dabar turiu išmokti tokia būti.
05:53
I need a heart so pure that if it's stripped bare by dementia, it will survive.
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Man reikia tokios tyros širdies, kad, silpnaprotystei ją išrengus, ji išgyventų.
05:58
I don't want to get Alzheimer's disease.
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Nenoriu susirgti Alzheimeriu.
06:01
What I want is a cure in the next 20 years, soon enough to protect me.
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Noriu, kad per ateinančius 20 metų būtų išrasti vaistai, pakankamai anksti, kad mane apsaugotų.
06:05
But if it comes for me, I'm going to be ready.
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Bet jei liga manęs ateis, aš būsiu pasiruošusi.
06:08
Thank you.
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Ačiū.
06:10
(Applause)
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Aplodismentai.
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