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.
Ma tahan teile rääkida oma isast. Mu isal on Alzheimeri tõbi. Esimesed sümptomid ilmnesid 12 aasta eest ning lõplik diagnoos pandi 2005. aastal. Tänaseks on ta juba väga haige. Ta vajab abi söömisel ja riietumisel ning ta ei adu enam enda ümber toimuvat ning on samuti kaotanud ajataju. See kõik on olnud väga kurnav. Mu isa on peaaegu terve elu olnud minu kangelane ja mentor, kuid viimase kümne aasta jooksul olen ma näinud teda vaikselt hääbumas.
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.
Minu isa ei ole ainus. Umbes 35 miljonil inimesel esineb mingi dementsuse vorm ning 2030. aastaks on haiguse põdejate arv tõenäoliselt kahekordistunud. See on tohutu hulk inimesi. Dementsus hirmutab meid. Põdejate segaduses näoilmed ja värisevad käed ning suur arv on äärmiselt heidutavad. Hirmust ajendatuna teeme me ühte kahest: Me kas eitame olukorda ja korrutame endale, et minuga seda ei juhtu või otsustame haigust teadlikult ennetada ning arvame, et meieni see ei jõua, sest oleme teinud kõik selle vältimiseks. Mina otsin kolmandat võimalust: ma olen valmis Alzheimerit põdema.
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.
Muidugi on ka ennetamine oluline ning ma tegelen sellega igapäevaselt: ma söön õigeid asju, olen füüsiliselt aktiivne ning treenin oma mõistust. Uurimused väidavad, et see kõik aitab haigust ennetada. Kuid uurimused näitavad ka seda, et miski ei suuda tõbe täiesti kindlalt ära hoida. See peletis saab su alati kätte. See juhtuski minu isaga. Ta oli kakskeelne professor, kes tegeles male, bridži ja vahel ka ajakirjandusega. (Naer) Kuid see kõik ei päästnud teda Alzheimerist. See peletis saab su alati kätte. Eriti minu puhul, sest Alzheimeri tõbi on päritav. Niisiis olen ma valmis Alzheimerit põdema.
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.
Oma isa eest hoolt kandes ning uurimustööd tehes sain teada, et pean keskenduma kolmele aspektile: esiteks üritan ma muuta oma harjumusi ja füüsiliselt aktiivsem olla ning teiseks püüan ma midagi peaaegu võimatut, ma üritan saada paremaks inimeseks. Alustagem hobidest. Dementsuse süvenedes on aina raskem elust rõõmu tunda. Sa ei saa enam sõpradega pikki vestlusi pidada, sest sa ei tunne neid ära. Telesaated tekitavad segadust ja hirmu. Lugemine on peaaegu võimatu. Dementse inimese eest hoolitsemisel õpetatakse, et haige peab tegelema millegi tuttavaga, mis nõuab käelist ja piiritlemata tegutsemist. Minu isa puhul oli see ankeetide täitmine. Ta oli riikliku ülikooli õppjõud ning tundis bürokraatiat läbi ja lõhki. Ta signeerib igale joonele oma nime, teeb kõikidesse kastidesse ristikesed ning kirjutab numbrid sinna, kus tema arvates peaksid numbrid olema. Ning see pani mu mõtlema. Mida minu hooldajad minuga teeksid? Ma olen oma isa tütar. Ma loen, kirjutan ja mõtlen tihti ülemaailmsest tervisest. Kas mulle antakse akadeemilised artiklid, et ma saaksin nende servadele sirgeldada? Või antakse mulle värvimiseks tabeleid ja graafikuid? Niisis olen ma püüdnud tegeleda asjadega, mis nõuavad käelist tegevust. Mulle on alati meeldinud joonistada, kuigi ma ei oska seda eriti. Samuti õpin ma väga algelist origamit ning võin näiteks suurepärase karbi valmistada. (Naer) Veel harjutan ma ka kudumist, nüüdseks saan juba korraliku lapiga hakkama.
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.
Kuid polegi oluline, kui osav ma olen. Tähtis on, et mu käed mäletavad liigutusi. Mida rohkem ma teen ja mida rohkem tegevusi mu käed oskavad, seda rohkem on mul tegevust siis, kui mu mõistus hääbuma hakkab. Öeldakse, et tegusad inimesed on õnnelikumad ja lihtsamad hoolealused ning põevad vahel ka vähem sümptomeid. See kõik tundub minu jaoks imeline. Ma tahan olla võimalikult kaua võimalikult õnnelik. Paljud ei tea, et Alzheimeri tõvel on füüsilised ja kognitiivsed sümtomid. Haigel tekivad tasakaaluhäired ning samuti lihasvärinad, mille tulemusel inimene liigub aina vähem ja vähem. Haiged kardavad lõpuks ringi liikuda, isegi liigutada. Niisiis harrastan ma tegevusi, mis treenivad tasakaalu. Nii jooga kui tai chiga tegelemine parandab tasakaalu ning aitab mul liikuda siis, kui mul peaksid tasakaaluhäired tekkima. Samuti tegelen ma jõuharjutustega, mis aitavad siis, kui mu keha hakkab närbuma.
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.
Ja viimasena, ma üritan olla parem inimene Enne haiguse süvenemist oli mu isa lahke ja hooliv ning ta on seda ka praegu. Ma näen, kuidas tema mõistus, huumorimeel ja keeleoskused hääbuvad, kuid ma näen samuti, et ta armastab mind ja minu poegi, ta armastab mu venda ja mu ema ning ka inimesi, kes tema eest hoolitsevad. Armastus hoiab meid tema juures ka nüüd, kui olukord on väga raske. Kõik elu jooksul õpitu on temalt võetud, kuid tema hea süda on endiselt alles. Ma ei ole kunagi olnud nii armastav ega hooliv kui minu isa. Nüüd ma pean ma õppima, kuidas selliseks inimeseks saada. Ma soovin endale puhast südant, mis jääks püsima ka siis, kui haigus võtab kõik muu.
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.
Ma ei taha Alzheimeri tõbe põdeda. Ma loodan, et 20 aasta pärast on minu jaoks juba ravim olemas. Kuid kui see haigus mind murda tahab, kavatsen ma selleks valmis olla. Tänan teid!
(Applause)
(Aplaus)