Producer Rome Hartman and Bill Whitaker discussed their story on what they call the cruelest disease you've never heard of.

製片人羅馬-哈特曼和比爾-惠特克討論了他們的故事，他們稱之為你從未聽說過的最殘酷的疾病。

I had never heard of FTD frontotemporal dementia.

我從來沒有聽說過FTD額顳葉痴呆症。

I had never heard of it either.

我也從來沒有聽說過它。

In what way did you see the cruelty of this disease?

你以何種方式看到這種疾病的殘酷性？

It hits people in the prime of their lives.

它打擊了正值壯年的人們。

It hits families in their prime.

它打擊了正值壯年的家庭。

It makes you do strange, strange things.

它讓你做一些奇怪的事，奇怪的事。

You might go over to a table in a restaurant and take the food off of a stranger's plate.

你可能會走到餐廳的一張桌子前，從一個陌生人的盤子裡拿走食物。

Um, you say totally inappropriate things and before you know it, you're living in this upside down world.

嗯，你說了完全不合適的事情，在你知道之前，你就生活在這個顛倒的世界裡。

The other cruelty is that there's currently no treatment and there's nothing that can be done and the outcome is always death.

另一個殘酷的現象是，目前沒有任何治療方法，也沒有任何可以做的事情，結果總是死亡。

There's much hopeful research going on.

有很多有希望的研究正在進行。

But at the moment um, there's nothing that can be done.

但目前嗯，沒有什麼可以做的。

There's nothing.

什麼都沒有。

And uh, we're talking primarily about the behavioral variant but with the speech variant that we saw with Tracey lind, the cruelty there is that it's taking away the part of her that makes her who she is and before the onset of FTD language and speech came easily and naturally to you.

呃，我們主要談論的是行為變體，但對於我們在特蕾西-林德身上看到的語言變體，其殘酷之處在於它奪走了使她成為她自己的一部分，而在FTD發病之前，語言和說話對你來說是容易和自然的。

Oh yeah, yeah.

哦，是的，是的。

I mean, you know my, my whole life was about language so they said where we can go if you guys are ready, we see a walk and talk that you tried to film with Tracey and Emily and she struggled.

我的意思是，你知道我的，我的整個生活是關於語言的，所以他們說，如果你們準備好了，我們可以去哪裡，我們看到你試圖與特蕾西和艾米麗拍攝的散步和談話，她掙扎著。

She struggled quite a bit.

她掙扎得很厲害。

Is it difficult for you to be out here with the traffic and people and we were on a street corner in san Francisco.

對你來說，在外面的交通和人流中是否有困難，我們在舊金山的一個街角上。

It was just a horrible confluence of events, the wind picked up, knocked over a sign a bus pulled up and made a loud breaking noise.

這只是一個可怕的事件組合，風起了，打翻了一個牌子，一輛公共汽車停了下來，發出了巨大的破碎聲。

It's the lights and it's the sound.

是燈光，是聲音。

All of this was going on at the time that she was trying to cross the street and she panicked too much aside from being shocked at how devastating this disease is.

所有這些都發生在她試圖過馬路的時候，除了對這種疾病的破壞性感到震驚之外，她還過於恐慌。

I was most impressed with the caregivers.

我對護理人員印象最深。

How are you doing?

你還好嗎？

I brought, I brought a friend of mine and I told him they need to bring the big camera bill.

我帶來了，我帶來了我的一個朋友，我告訴他他們需要帶來大的相機賬單。

How are you?

你好嗎？

Very nice to meet you.

非常高興見到你。

You interview Mark johnson at the nursing facility and you saw close up what this disease has done to him.

你在護理機構採訪馬克-約翰遜，你近距離看到了這種疾病對他的影響。

You understand why you're here?

你明白你為什麼在這裡嗎？

No, I think you'd be okay at home.

不，我認為你在家裡會很好。

Yeah.

是的。

Yeah.

是的。

It was very difficult.

這是很困難的。

Sad as she told us about her visits.

當她向我們講述她的訪問時，很難過。

They have four kids for very young kids take your backpack off honey.

他們有四個孩子，對於非常年輕的孩子來說，把你的揹包拿下來吧，寶貝。

He'll kiss the kids Then after just a couple of minutes he's done.

他將親吻孩子們 然後在短短几分鐘後他就完成了。

He wants them to leave.

他希望他們離開。

He did that with you the same by I don't want to make you uncomfortable.

他對你也是這樣做的，我不想讓你感到不舒服。

Okay.

好的。

I see you okay.

我看你還好。

Okay.

好的。

See markets real nice to meet you can go lay in bed in the middle and I talked to Amy a lot about that in the days and weeks leading up to it and whether to interview Mark.

看到市場真正好的滿足，你可以去躺在中間的床上，我和艾米談了很多，在這之前的幾天和幾周，以及是否要採訪馬克。

Well we knew it wasn't going to be an interview.

好吧，我們知道這不會是一次採訪。

It was an encounter.

那是一次邂逅。

I mean because he's not really there to be interviewed, but I think she felt that it was important If the idea is to raise awareness of this disease, you sort of have to see somebody in the throes of it.

我的意思是，因為他不是真的在那裡接受採訪，但我認為她覺得這很重要，如果這個想法是為了提高對這種疾病的認識，你必須看到有人處於這種疾病的痛苦之中。

The cameraman and sound man came out shaken and it is hard to watch.

攝像師和音響師搖搖晃晃地走出來，讓人看了很難受。

It's hard to watch.

這是很難看的。

These women in our piece are selfless and determined and you know, they get knocked down, they get back up and so full of love, so caring.

我們作品中的這些女性是無私的、堅定的，你知道，她們被打倒了，又重新站起來，如此充滿愛，如此有愛心。

It's really hard.

這真的很難。

It's hard to manage it.

這很難管理。

I wish I could be here all the time and I can't be.

我希望我可以一直在這裡，但我不能。

So you you have a partner who is no longer a partner.

所以你你有一個不再是夥伴的夥伴。

Amy for one is so compassionate and so involved and so determined to give him everything she has that she'll never give up on him.

艾米就很有同情心，很投入，決心給他一切，她永遠不會放棄他。

Thank you.

謝謝你。