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

Translator: Morton Bast Reviewer: Thu-Huong Ha

譯者: Chen-Han Hsiao 審譯者: Yuguo Zhang

I'd like to talk about my dad.

我想談一談我的爸爸

My dad has Alzheimer's disease.

我爸患有阿茲海默症(老年癡呆症)

He started showing the symptoms about 12 years ago,

他症狀開始於大約12年前

and he was officially diagnosed in 2005.

而他的正式診斷是在2005年

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

他現在是真的病入膏肓了，他需要別人餵食

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

需要別人幫他穿衣服，他甚至不知道自己在哪裡

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

或現在是什麼時間，這些對他非常困難

My dad was my hero and my mentor for most of my life,

我的爸爸是我的英雄，也是我一生中的導師

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

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,

我的爸爸並不孤單。全球有約 3500 萬人有某種形式的癡呆症

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

到了 2030 年，預計將增加為2倍，達到 7000 萬人

That's a lot of people.

這真是很多人

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

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

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

得到癡呆症的人如此多，令我們恐慌

And because of that fear, we tend to do one of two things:

而且由於恐懼，我們往往表現出兩種行為：

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

我們否認："不是我，這與我無關，它永遠不會發生在我身上"

Or, we decide that we're going to prevent dementia,

或者，我們決定要防止癡呆症

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

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

I'm looking for a third way: I'm preparing to get Alzheimer's disease.

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.

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

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

我吃的好，我每天運動，我天天做思考鍛鍊大腦

that's what the research says you should do.

這就是研究顯示你應該做的

But the research also shows that there's nothing that will 100 percent protect you.

但研究還顯示，沒有什麼會100%保護你

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

如果這個怪物想要你，它就能得到你

That's what happened with my dad.

這就是我爸爸所發生的

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

我爸爸是個雙語的大學教授。他的嗜好是象棋、 橋牌、 寫專欄

(Laughter)

（笑聲）

He got dementia anyway.

不管怎麼說，他得到了癡呆症

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

如果這個怪物想要你，它就能得到你

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

如果你像我的話尤其如此，阿茲海默症往往在家庭中遺傳

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

所以我準備得老年癡呆症

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

基於我藉由照顧我的父親，學到的事

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

和關於如何與癡呆共存的研究，我專注於準備中的三件事

I'm changing what I do for fun, I'm working to build my physical strength,

我正改變我的興趣，我也加強我的體力

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

以及最困難的，我嘗試成為一個更好的人

Let's start with the hobbies. When you get dementia, it gets harder and harder to enjoy yourself.

我們從嗜好開始吧。當你癡呆時，會變得越來越難享受生活

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

你不會坐下來與你的老朋友促膝長談，因為你不認識他們

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

看電視時也會感到困感，而且往往感到可怕

And reading is just about impossible.

閱讀也是幾乎不可能

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

當您要去照顧癡呆症的人時，你會先接受訓練

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

訓練你讓病人參與他們熟悉，且他們可以親身實踐的活動

With my dad, that turned out to be letting him fill out forms.

對我的父親來說，實際上就是讓他填寫表單

He was a college professor at a state school; he knows what paperwork looks like.

他是一名州立大學的教授；他知道什麼是文書工作

He'll sign his name on every line, he'll check all the boxes,

他會在每一條線上簽他的名字，他會檢查所有的欄位

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

他會把號碼放在該放的位置

But it got me thinking, what would my caregivers do with me?

但這讓我想到，我的照顧者會和我一起做什麼呢？

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

我是我父親的女兒。我能讀能寫，我關注全球健康議題

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

他們會給我學術期刊，讓我可以在頁邊隨意畫圖嗎？

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

他們會給我圖案讓我上色嗎？

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

所以我一直試圖學著去做那些動手的事

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

我一直喜歡畫圖，所以我經常畫畫，即使我很不擅長

I am learning some basic origami. I can make a really great box.

我在學習一些基本的折紙。我可以做一個特大的箱子

(Laughter)

（笑聲）

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

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.

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

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

因為如果有越多熟悉的東西，更多我的手懂得做的事

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

當我的大腦不再運作時，我就有更多事可以樂在其中

They say that people who are engaged in activities are happier,

他們說專注於活動的人更快樂、

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

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

That all seems like win to me.

我看來這就是勝利

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

我想這樣的快樂下去

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

很多人不知道其實阿茲海默症有物理症狀

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

也伴隨著認知症狀。你失去平衡感

you get muscle tremors, and that tends to lead people to being less and less mobile.

你會肌肉震顫，這會使人們傾向於減少活動

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

他們害怕到處去走走 他們害怕去移動

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

所以我進行活動來建立我的平衡感

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

我做瑜珈、太極來提高我的平衡感，若我開始失去平衡感

I'll still be able to be mobile.

我將仍然可以移動

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

我做負重運動來增加肌肉力量

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

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.

最後，第三件事。我想成為一個更好的人。

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

我的爸爸在患阿茲海默症之前是個可藹可親的人，而他現在依然是。

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

我看著他失去了他的才智，他的幽默感，他的語言技巧

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

但也目睹了，他愛我，他愛我的兒子

he loves my brother and my mom and his caregivers.

他喜歡我的兄弟、我的媽媽和他的看護

And that love makes us want to be around him, even now.

愛讓我們想陪伴在他周圍，即便是現在

even when it's so hard.

即便是日子很辛苦

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

當你帶走他曾經在這世界上學的一切

his naked heart still shines.

他赤裸的心依然閃耀

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

我從未像我老爸一樣的和藹慈祥

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

我現在需要學會像他這樣

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

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.

我不想得阿茲海默症

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

我希望在未來 20 年內，會有一種治療方法能保護我

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

但如果它還是到來，我已經準備好了

Thank you.

謝謝

(Applause)

（掌聲）