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.
Gustaríame falarlles de meu pai. Meu pai ten alzhéimer. Comezou a mostrar os síntomas hai uns 12 anos, e foi diagnosticado oficialmente no 2005. Agora, de feito, atópase bastante enfermo. Necesita axuda para comer, para vestirse, non sabe onde se atopa nin en que momento. Isto está a ser moi duro. Meu pai foi o meu heroe e o meu mentor durante boa parte da miña vida, e levo unha década vendo como desaparece.
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.
Pero non está só. Arredor de 35 millóns de persoas a nivel mundial teñen algún tipo de demencia, e para o 2030 espérase que a cifra se dobre ata os 70 millóns. Iso é moita xente. A demencia asústanos. As caras desorientadas e as mans trementes da xente que a padece, o gran número de persoas que a teñen... Todo iso atérranos. E por culpa dese medo, tendemos a facer dúas cousas: Aferrámonos á negación: "Non son eu, non ten nada que ver comigo, nunca me vai pasar." Ou ben, decidímonos a previr a demencia, pensando que nunca virá por nós, porque o estamos a facer todo ben para previla.
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.
Eu estou buscando unha terceira vía: estoume a preparar para ter alzhéimer. A prevención é boa, e propúxenme facer todo o que se poida para previlo. Estou comendo ben, fago exercicio todos os días, manteño a mente activa... Iso é o que as investigacións din que deberiamos facer. Pero esas investigación tamén din que non hai nada que poida protexernos ao 100%. Se o monstro vai por ti, atraparate. Iso é o que pasou co meu pai. Meu pai era profesor universitario bilingüe. Os seus pasatempos eran o xadrez, o bridge e escribir artigos de opinión. (Risas) Aínda así ten demencia. Se o monstro vai por ti, atraparate. Sobre todo se es eu, porque o alzhéimer tende a herdarse. Por iso me estou a preparar para ter alzhéimer.
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.
Partindo do que aprendín coidando a meu pai, investiguei sobre como é vivir con demencia e estoume centrando en tres puntos para a miña preparación: estou cambiando o que fago por diversión, traballo para mellorar a miña forza física, e --esta é a parte máis complicada--, estou intentando ser mellor persoa. Comecemos polos pasatempos. Cando se ten demencia, cada vez é máis difícil divertirse. Non podes sentarte e ter conversas cos teus vellos amigos, porque non os recoñeces. É confuso ver a televisión, ás veces incluso chega a ser aterrador. Mesmo a lectura se fai case imposible. Cando coidas a alguén con demencia, e recibes adestramento para facelo, ensínanche a propoñerlles actividades que lles sexan familiares, prácticas e de carácter aberto. No caso de meu pai, o resultado foi deixarlle encher formularios. Foi profesor nunha universidade pública, sabe como vai o papelame. (Risas) Asina co seu nome en cada liña, marca todas as casas, e pon números onde cre que debería habelos. Pero isto fíxome pensar, que farían os meus coidadores comigo? Son filla de meu pai. Leo, escribo, penso moito acerca da saúde global... Daríanme revistas académicas para que puidese facer garabatos nas marxes? Daríanme táboas e gráficos que puidese colorear? Por iso estiven intentando aprender a facer cousas manuais e prácticas. Sempre me gustou debuxar, así que agora fágoo máis a miúdo, aínda que non sexa moi boa. Estou aprendendo a facer figuras de papel sinxelas. Xa sei facer unha caixa incríbel. (Risas) E estou aprendendo a tecer, polo momento sei tecer unha bóla. (Risas)
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.
Pero, xa saben, en realidade non importa se son boa. O que importa é que as miñas mans saben como facelo. Porque cantas máis cousas me sexan familiares, máis cousas lembrarán as miñas mans, e máis cousas me manterán feliz e ocupada cando o meu cerebro deixe de mandar. Din que as persoas que fan moitas actividades son máis felices, é máis doado coidalas, e ata pode facer máis lento o avance da enfermidade. Para min iso é gañar a partida. Quero ser todo o feliz que poida mentres me sexa posible. Moita xente descoñece o feito de que o alzhéimer implica tanto síntomas físicos coma síntomas cognitivos. Pérdese o sentido do equilibrio, os músculos sofren espasmos, e iso deixa ás persoas cada vez máis inmóbiles. Asústalles camiñar. Asústalles ata moverse. Por iso estou facendo actividades que melloren o meu equilibrio. Fago ioga e tai chi para mellorar o meu equilibrio, para que cando comece a perdelo, aínda sexa capaz de moverme. Fago exercicios con pesas, de maneira que teña forza física para que, cando comece a atrofiarme, dispoña de máis tempo de mobilidade.
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.
Por último, o terceiro paso, estou mellorando como persoa. Meu pai era amable e cariñoso antes de ter alzhéimer, e é amable e cariñoso tamén agora. Vin como perdía a súa intelixencia, o seu sentido do humor, e as súas habilidades lingüísticas. Pero tamén vin isto: quéreme, adora aos meus fillos, quere a meu irmán, a miña nai e aos seus coidadores. Ese amor fai que queiramos estar preto del mesmo agora, a pesar do difícil que é. Cando lle sacas todo o que aprendeu durante a súa vida, o seu corazón espido aínda brilla. Nunca fun tan amable coma meu pai, nin tan cariñosa. O que preciso agora é ser así. Necesito un corazón tan puro que, aínda desprovisto de todo pola demencia,
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.
poida sobrevivir. Non quero ter alzhéimer. O que quero é unha cura nos próximos 20 anos, suficientemente pronto para que me protexa. Pero se a enfermidade vén por min, estarei preparada.
(Applause)
Grazas.