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.
大约在 12 年前他便开始显现出症状, 并在 2005 年被确诊。
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.
现在他是真的很虚弱。他需要被帮助进食, 他需要被帮助穿衣,他甚至不知道自己身处何方 这对家庭来说真的十分不易
My dad was my hero and my mentor for most of my life, and I’ve spent the last decade watching him disappear.
我的爸爸是我心中的英雄,和一生长期以来的导师 而在过去的十年,我不得不目送他远去
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.
我爸爸并不孤单。全球有约 3500 万人生活在某种形式的痴呆症影响下, 预计到 2030 年,这个数字会加倍而达到 7000 万。
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.
痴呆令我们害怕。神情恍惚,手脚振颤的痴呆患者们 和如此之巨的发病数字令我们恐慌。
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.”
而且由于恐惧,我们往往会做这两件事之一: 我们选择拒绝:“不是我得病,这与我无关,它永远不会发生在我身上。“
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.
或我们决定去预防痴呆症, 这样它就永远不会发生在我们身上。因为我们会竭尽全力遏制疾病。
I’m looking for a third way: I’m preparing to get Alzheimer’s disease.
我却在寻找第三种方法: 我正为老年痴呆的到来准备好。
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.
我饮食健康,我每天运动,我不断思索以锻炼大脑 这是研究告诉你该做的事。
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.
(笑声) 无论怎样,他得了痴呆症。
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.
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:
基于我在对父亲的护理中所学到的, 和关于如何与痴呆患者相处的研究,我专注于准备中的三件事:
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.
我正在尝试改变自己的乐趣,我正在训练来加强我的体能 和最困难的 —— 我想成为一个更有为的人。
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.
当你要去照顾痴呆的人,你会先得到培训, 训练你让病人参与他们熟悉,且他们可以亲身实践的活动。
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.
他是州立大学的一名教授 ;他清楚什么是批文手续。
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.
他会把名字签在每一条线上,他会检查所有的项目, 他会把数字写在他认为应有数字的地方。
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.
我在学习一些基础的折纸 —— 我能做一个特大的箱子。
(Laughter) And I’m teaching myself to knit, which so far I can knit a blob.
(笑声) 我在教自己编织,而到目前为止,我可以织个线团。
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.
因为如果有越多熟悉的东西,更多我的手知道如何去做的事, 我就会在大脑不再主宰的时候有更多的快乐的事去做
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.
人们说专注于活动的人更快乐, 对他们的医护人员来说更容易照顾,它甚至可能减缓疾病的发展。
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,
很多人不知道老年痴呆其实有物理症状, 以及认知症状。你失去对平衡的感觉
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.
我练瑜珈、 太极来提高我的平衡性,这样,当我开始失去它时, 我将仍然可以移动。
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.
我做负重运动来增加肌肉力量 这样当我身体开始萎缩,我会有更多的时间可以左右移动。
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.
我见过他失去他的才智,他的幽默感和他的语言技巧, 但我也看到: 他爱我、他爱我的儿子、 他爱我的兄弟、我的妈妈和他照顾者。
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.
当你带走他曾经在这世上所学的一切, 他赤裸的心依然闪耀。
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.
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.

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