Alanna Shaikh: How I'm preparing to get Alzheimer's

Translator: Morton Bast Reviewer: Thu-Huong Ha

翻译人员: Jiadong Ma 校对人员: Yuguo Zhang

I'd like to talk about my dad.

我想谈一谈我的父亲。

My dad has Alzheimer's disease.

我父亲有老年痴呆症。

He started showing the symptoms about 12 years ago,

大约在 12 年前他便开始显现出症状，

and he was officially diagnosed in 2005.

并在 2005 年被确诊。

Now he's really pretty sick. He needs help eating,

现在他是真的很虚弱。他需要被帮助进食，

he needs help getting dressed, he doesn't really know where he is

他需要被帮助穿衣，他甚至不知道自己身处何方

or when it is, and it's been really, really hard.

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,

我的爸爸是我心中的英雄，和一生长期以来的导师

and I've spent the last decade watching him disappear.

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,

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，

and by 2030 they're expecting that to double to 70 million.

预计到 2030 年，这个数字会加倍而达到 7000 万。

That's a lot of people.

那可是相当多的人。

Dementia scares us. The confused faces and shaky hands of people who have dementia,

痴呆令我们害怕。神情恍惚，手脚振颤的痴呆患者们

the big numbers of people who get it, they frighten us.

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:

而且由于恐惧，我们往往会做这两件事之一：

We go into denial: "It's not me, it has nothing to do with me, it's never going to happen to me."

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,

或我们决定去预防痴呆症，

and it will never happen to us because we're going to do everything right and it won't come and get us.

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.

预防很好，我也和你一样在力所能及范围内抗击阿尔茨海默氏症。

I'm eating right, I'm exercising every day, I'm keeping my mind active,

我饮食健康，我每天运动，我不断思索以锻炼大脑

that's what the research says you should do.

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.

但研究也显示，没有什么会100%保护着你。

If the monster wants you, the monster's gonna get you.

道高一尺，魔高一丈

That's what happened with my dad.

这就是我爸爸的遭遇。

My dad was a bilingual college professor. His hobbies were chess, bridge and writing op-eds.

我的爸爸是个双语的大学教授。他业余爱好包括国际象棋、桥牌和写专栏。

(Laughter)

（笑声）

He got dementia anyway.

无论怎样，他得了痴呆症。

If the monster wants you, the monster's gonna get you.

道高一尺，魔高一丈

Especially if you're me, 'cause Alzheimer's tends to run in families.

如果你是我的话尤其如此，因为老年痴呆有家族内群聚发病特性。

So I'm preparing to get Alzheimer's disease.

所以我正准备患上老年痴呆症。

Based on what I've learned from taking care of my father,

基于我在对父亲的护理中所学到的，

and researching what it's like to live with dementia, I'm focusing on three things in my preparation:

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,

我正在尝试改变自己的乐趣，我正在训练来加强我的体能

and -- this is the hard one -- I'm trying to become a better person.

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.

我们从爱好开始吧。当你痴呆时，享受生活会越来越难。

You can't sit and have long talks with your old friends, because you don't know who they are.

你不能坐下与旧友促膝长谈，因为你不知道他们是谁。

It's confusing to watch television, and often very frightening.

看电视会令你困惑，而且往往非常恐怖。

And reading is just about impossible.

而阅读几乎是不可能。

When you care for someone with dementia, and you get training,

当你要去照顾痴呆的人，你会先得到培训，

they train you to engage them in activities that are familiar, hands-on, open-ended.

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.

对我父亲来说，实际就是让他填表单。

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,

他会把名字签在每一条线上，他会检查所有的项目，

he'll put numbers in where he thinks there should be numbers.

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?

但这让我思考，我的照顾者会和我一起做什么呢？

I'm my father's daughter. I read, I write, I think about global health a lot.

我是我父亲的女儿。我经常阅读、写作和思考全球健康。

Would they give me academic journals so I could scribble in the margins?

他们会给我学术期刊以让我可以在页边涂鸦吗？

Would they give me charts and graphs that I could color?

他们会给我图案让我上色吗？

So I've been trying to learn to do things that are hands-on.

因此，我一直试图学着去做那些动手的事。

I've always liked to draw, so I'm doing it more even though I'm really very bad at it.

我一直喜欢要绘画，所以我经常画，即使我真的画得很烂。

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)

（笑声）

And I'm teaching myself to knit, which so far I can knit a blob.

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.

但，你懂的，做得好不好没关系。重要的是我的手知道如何去做。

Because the more things that are familiar, the more things my hands know how to do,

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，

the more things that I can be happy and busy doing when my brain's not running the show anymore.

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,

人们说专注于活动的人更快乐，

easier for their caregivers to look after, and it may even slow the progress of the disease.

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.

我看来这就是胜利

I want to be as happy as I can for as long as I can.

我想逍遥一生，无忧无虑

A lot of people don't know that Alzheimer's actually has physical symptoms,

很多人不知道老年痴呆其实有物理症状，

as well as cognitive symptoms. You lose your sense of balance,

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.

你会肌肉震颤，而这使人们倾向于减少活动。

They get scared to walk around. They get scared to move.

他们开始害怕走路，害怕移动。

So I'm doing activities that will build my sense of balance.

所以我在做将建立我平衡感的活动。

I'm doing yoga and tai chi to improve my balance, so that when I start to lose it,

我练瑜珈、 太极来提高我的平衡性，这样，当我开始失去它时，

I'll still be able to be mobile.

我将仍然可以移动。

I'm doing weight-bearing exercise, so that I have the muscle strength

我做负重运动来增加肌肉力量

so that when I start to wither, I have more time that I can still move around.

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.

最后，第三件事。我想成为一个更有为的人。

My dad was kind and loving before he had Alzheimer's, and he's kind and loving now.

我的爸爸在老年痴呆前是个和蔼可亲的人，且现在也是

I've seen him lose his intellect, his sense of humor, his language skills,

我见过他失去他的才智，他的幽默感和他的语言技巧，

but I've also seen this: He loves me, he loves my sons,

但我也看到： 他爱我、他爱我的儿子、

he loves my brother and my mom and his caregivers.

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.

而那爱让我们想陪伴在他周围，即使是现在。

even when it's so hard.

即使那很难

When you take away everything that he ever learned in this world,

当你带走他曾经在这世上所学的一切，

his naked heart still shines.

他赤裸的心依然闪耀。

I was never as kind as my dad, and I was never as loving.

我从来未跟我父亲一样和蔼慈祥。

And what I need now is to learn to be like that.

而我现在需要的就是学会成为这样的人。

I need a heart so pure that if it's stripped bare by dementia, it will survive.

我需要一颗即使由于痴呆被剥离裸露，也能生存下来的纯洁的心。

I don't want to get Alzheimer's disease.

我不想患老年痴呆。

What I want is a cure in the next 20 years, soon enough to protect me.

我要的是在20年内找到一种来得及保护我的治疗方法。

But if it comes for me, I'm going to be ready.

但如果事与愿违，我将毫不畏惧

Thank you.

谢谢。

(Applause)

（掌声）