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.
我想談一談我的爸爸 我爸患有阿茲海默症(老年癡呆症) 他症狀開始於大約12年前 而他的正式診斷是在2005年 他現在是真的病入膏肓了,他需要別人餵食 需要別人幫他穿衣服,他甚至不知道自己在哪裡 或現在是什麼時間,這些對他非常困難 我的爸爸是我的英雄,也是我一生中的導師 而在過去的十年,我看著他消逝
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.
我的爸爸並不孤單。全球有約 3500 萬人有某種形式的癡呆症 到了 2030 年,預計將增加為2倍,達到 7000 萬人 這真是很多人 癡呆症令我們害怕。癡呆症的人有著困惑的面孔和晃動的雙手 得到癡呆症的人如此多,令我們恐慌 而且由於恐懼,我們往往表現出兩種行為: 我們否認:"不是我,這與我無關,它永遠不會發生在我身上" 或者,我們決定要防止癡呆症 令它永遠不會發生在我們身上。我們做好每件事,讓它不會發生 我在尋找第三個辦法: 我準備得老年癡呆症
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.
預防是好的。我所做的正是你可以用來防止阿茲海默症的事 我吃的好,我每天運動,我天天做思考鍛鍊大腦 這就是研究顯示你應該做的 但研究還顯示,沒有什麼會100%保護你 如果這個怪物想要你,它就能得到你 這就是我爸爸所發生的 我爸爸是個雙語的大學教授。他的嗜好是象棋、 橋牌、 寫專欄 (笑聲) 不管怎麼說,他得到了癡呆症 如果這個怪物想要你,它就能得到你 如果你像我的話尤其如此,阿茲海默症往往在家庭中遺傳 所以我準備得老年癡呆症
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.
基於我藉由照顧我的父親,學到的事 和關於如何與癡呆共存的研究,我專注於準備中的三件事 我正改變我的興趣,我也加強我的體力 以及最困難的,我嘗試成為一個更好的人 我們從嗜好開始吧。當你癡呆時,會變得越來越難享受生活 你不會坐下來與你的老朋友促膝長談,因為你不認識他們 看電視時也會感到困感,而且往往感到可怕 閱讀也是幾乎不可能 當您要去照顧癡呆症的人時,你會先接受訓練 訓練你讓病人參與他們熟悉,且他們可以親身實踐的活動 對我的父親來說,實際上就是讓他填寫表單 他是一名州立大學的教授;他知道什麼是文書工作 他會在每一條線上簽他的名字,他會檢查所有的欄位 他會把號碼放在該放的位置 但這讓我想到,我的照顧者會和我一起做什麼呢? 我是我父親的女兒。我能讀能寫,我關注全球健康議題 他們會給我學術期刊,讓我可以在頁邊隨意畫圖嗎? 他們會給我圖案讓我上色嗎? 所以我一直試圖學著去做那些動手的事 我一直喜歡畫圖,所以我經常畫畫,即使我很不擅長 我在學習一些基本的折紙。我可以做一個特大的箱子 (笑聲) 我在教自己編織,到目前為止,我可以織個線球
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.
但是你知道,我擅不擅長並無所謂。重要的是我的手知道如何去做 因為如果有越多熟悉的東西,更多我的手懂得做的事 當我的大腦不再運作時,我就有更多事可以樂在其中 他們說專注於活動的人更快樂、 使他們的醫護人員更容易照顧,它甚至可能會緩和這種疾病 我看來這就是勝利 我想這樣的快樂下去 很多人不知道其實阿茲海默症有物理症狀 也伴隨著認知症狀。你失去平衡感 你會肌肉震顫,這會使人們傾向於減少活動 他們害怕到處去走走 他們害怕去移動 所以我進行活動來建立我的平衡感 我做瑜珈、太極來提高我的平衡感,若我開始失去平衡感 我將仍然可以移動 我做負重運動來增加肌肉力量 當我身體開始萎缩,我會有更多的時間可以自由活動
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.
最後,第三件事。我想成為一個更好的人。 我的爸爸在患阿茲海默症之前是個可藹可親的人,而他現在依然是。 我看著他失去了他的才智,他的幽默感,他的語言技巧 但也目睹了,他愛我,他愛我的兒子 他喜歡我的兄弟、我的媽媽和他的看護 愛讓我們想陪伴在他周圍,即便是現在 即便是日子很辛苦 當你帶走他曾經在這世界上學的一切 他赤裸的心依然閃耀 我從未像我老爸一樣的和藹慈祥 我現在需要學會像他這樣 我需要一顆純真的心,即使被癡呆症剝離裸露,它還會存活下來
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.
我不想得阿茲海默症 我希望在未來 20 年內,會有一種治療方法能保護我 但如果它還是到來,我已經準備好了 謝謝
(Applause)
(掌聲)