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.
Željela bih govoriti o svome tati. Moj tata ima Alzheimerovu bolest. Počeo je pokazivati simptome prije 12-ak godina, a službena dijagnoza mu je postavljena 2005. Sada je dosta bolestan. Treba pomoć kod jela, kod oblačenja, zapravo ne zna gdje je ni u kojem je vremenu i vrlo, vrlo je teško. Moj tata je bio moj heroj i moj mentor većinu mog života, a prošlo desetljeće sam provela gledajući 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 tata nije sam. Ima oko 35 milijuna ljudi na svijetu koji imaju neki oblik demencije, a očekuje se da će se do 2030. taj broj udvostručiti na 70 milijuna. To je mnogo ljudi. Demencija nas plaši. Zbunjena lica i drhtave ruke ljudi s demencijom, veliki broj ljudi koji je dobije, to nas plaši. I zbog tog straha obično učinimo jednu od dvije stvari: Poričemo: "Nisam to ja, ja nemam ništa s tim, meni se to nikad neće dogoditi." Ili, odlučimo da ćemo spriječiti demenciju i da se nama to nikada neće dogoditi zato što ćemo sve učiniti kako treba i neće doći i ščepati nas. Ja tražim treći put: pripremam se za dobivanje Alzheimerove 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 činim sve što se može učiniti kako bih je spriječila. Zdravo se hranim, vježbam svakim dan, održavam svoj um aktivnim, istraživanje kaže da biste to trebali činiti. Ali to istraživanje također pokazuje da ne postoji ništa što bi vas 100% zaštitilo. Ako vas čudovište želi, čudovište će vas ščepati. To se dogodilo mom tati. Moj otac bio je profesor na dvojezičnom sveučilištu. Njegovi hobiji bili su šah, bridž i pisanje op-ed članaka. (Smijeh) Ipak je dobio demenciju. Ako vas čudovište želi, čudovište će vas ščepati. Osobito ako ste ja zato što se Alzheimer obično javlja kod više članova u obitelji. Pa se pripremam za dobivanje Alzheimerove 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.
S obzirom na to što sam naučila brinući se za svoga oca i istražujući kako je živjeti s demencijom, usredotočila sam se na tri stvari u svojoj pripremi: mijenjam ono što činim za zabavu, radim na ojačavanju svoje fizičke snage i - ovo je težak dio - pokušavam postati bolja osoba. Započnimo s hobijima. Kada imate demenciju,postaje sve teže i teže uživati u sebi. Ne možete sjesti sa svojim starim prijateljima i dugo pričati zato što ne znate tko su oni. Zbunjujuće je gledati televiziju, a često i zastrašujuće. A čitanje je gotovo nemoguće. Kada se brinete za nekoga s demencijom i prođete obuku, nauče vas da ih uključite u aktivnosti koje su poznate, praktične, koje nemaju ograničenja. Kod mog tate je ta aktivnost bila popunjavanje obrazaca. Bio je sveučilišni profesor u državnoj školi; zna kako papirologija izgleda. Potpisat će se na svaku crtu, staviti kvačicu u svaki kvadratić, napisat će brojeve ondje gdje misli da bi trebali biti brojevi. Ali to me nagnalo na razmišljanje o tome što bi moji njegovatelji mogli učiniti sa mnom. Ja sam kćer svog oca. Čitam, pišem, dosta razmišljam o globalnom zdravlju. Bi li mi dali akademske časopise kako bih mogla piskarati po marginama? Bi li mi dali grafičke prikaze i grafove koje bih mogla bojiti? Pa pokušavam naučiti stvari koje su praktične. Uvijek sam voljela crtati pa to češće radim iako sam zbilja loša u crtanju. Učim osnovni origami. Mogu napraviti zbilja dobru kutiju. (Smijeh) Učim plesti, ali zasad ništa ne znam isplesti.
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 važno jesam li stvarno dobra u tome. Važno je da moje ruke znaju kako to raditi. Što više stvari koje su mi poznate, što više stvari moje ruke znaju raditi, više stvari koje će me veseliti i držati zaposlenom kada moj mozak više neće biti glavni. Kažu da su ljudi koji su uključeni u aktivnosti sretniji, lakše je njihovim njegovateljima brinuti se za njih, a to čak može i usporiti napredak bolesti. To mi se sve čini kao pobjeda. Želim biti što sretnija koliko god dugo to mogu biti. Mnogo ljudi ne zna da Alzheimer zapravo ima fizičke simptome, kao i kognitivne simptome. Izgubite osjećaj za ravnotežu, imate mišićne tremore i ljudi obično postaju sve manje i manje pokretni. Strah ih je hodati uokolo. Strah ih je micati se. Pa se bavim aktivnostima koje će poboljšati moj osjećaj za ravnotežu. Bavim se jogom i tai chijem da poboljšam ravnotežu pa ću, kad je počnem gubiti, i dalje biti pokretna. Radim vježbe s utezima da bih imala mišićnu snagu pa kad počnem venuti, imat ću više vremena da se mogu kretati uokolo.
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, treća stvar. Pokušavam postati bolja osoba. Moj tata je bio drag i pun ljubavi prije nego je obolio od Alzheimera, a takav je i sada. Vidjela sam kako gubi svoj intelekt, smisao za humor, svoje jezične vještine, ali vidjela sam i da voli mene, voli moje sinove, voli mog brata i moju mamu i svoje njegovatelje. I zbog toga želimo biti s njim, čak i sada, čak i kada je tako teško. Kada oduzmete sve što je ikad naučio na ovom svijetu, njegovo golo srce još uvijek sjaji. Nikad nisam bila draga kao moj tata, niti sam ikad bila puna ljubavi. A sada trebam naučiti biti takva. Trebam srce tako čisto da preživi ako bude 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 oboljeti od Alzheimerove bolesti. Želim lijek u sljedećih 20 godina, dovoljno brzo da me zaštiti. Ali ako dođe po mene, bit ću spremna. Hvala.
(Applause)
(Pljesak)