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