Simple hacks for life with Parkinson's | Mileha Soneji

譯者: Wink Wong 審譯者: May Cheung

In India, we have these huge families.

在印度盛行大家族。

I bet a lot of you all must have heard about it.

我肯定在座很多人 可能都聽說過。

Which means that there are a lot of family events.

也因此常常有很多家族活動。

So as a child, my parents used to drag me to these family events.

我小時候，父母常硬拉我 參加這些活動。

But the one thing that I always looked forward to

但有一樣我總是期待的，

was playing around with my cousins.

就是跟我的表兄弟姊妹玩耍。

And there was always this one uncle

那時有一位叔叔,他時常

who used to be there,

在我們左右。

always ready, jumping around with us,

隨時準備跟我們跑跑跳跳，

having games for us,

跟我們玩遊戲。

making us kids have the time of our lives.

使我們這班小童享受了 人生的一段快樂時光。

This man was extremely successful:

這位男士成就非凡：

he was confident and powerful.

那時他充滿自信，也很有權威。

But then I saw this hale and hearty person deteriorate in health.

但是不久我見到這位 健壯的男士健康轉壞。

He was diagnosed with Parkinson's.

他被確診患了柏金遜症。

Parkinson's is a disease that causes degeneration of the nervous system,

柏金遜症是導致神經系統 日漸退化的疾病

which means that this person who used to be independent

即是一向行動自如的人

suddenly finds tasks like drinking coffee, because of tremors, much more difficult.

就連想飲杯咖啡，都會因為身體突然間擅抖， 而感覺飲得困難。

My uncle started using a walker to walk,

我這位叔叔行路都開始要用助行器，

and to take a turn,

每走一步，

he literally had to take one step at a time, like this,

就真的好像我照字面講述，他真的要每次只能行一步，

and it took forever.

可要花很久才走完那段路。

So this person, who used to be the center of attention

我這位叔叔因而成為了焦點

in every family gathering,

在每次家庭聚會

was suddenly hiding behind people.

忽然間躲在人群後面。

He was hiding from the pitiful look in people's eyes.

他要逃避別人用可憐的目光 注視他。

And he's not the only one in the world.

世界上並不是只有他 有這樣的情況。

Every year, 60,000 people are newly diagnosed with Parkinson's,

每年有6萬名病人被確診 患上柏金遜症。

and this number is only rising.

而且數字一直在上升。

As designers, we dream that our designs solve these multifaceted problems,

我身為一位設計師，總希望自己的設計 可以解決多方面的問題，

one solution that solves it all,

能夠以一個方法去解決一切問題

but it need not always be like that.

但不需要常常都是這樣。

You can also target simple problems

你總可以針對一些簡單的問題。

and create small solutions for them and eventually make a big impact.

想出一些小方案去解決簡單的問題， 從而產生巨大的影響力。

So my aim here was to not cure Parkinson's,

所以我來這裡的目標 不是治好柏金遜症，

but to make their everyday tasks much more simple,

而是令病人在日常的行動中變得更簡單，

and then make an impact.

繼而造成深遠的影響。

Well, the first thing I targeted was tremors, right?

對了，我想第一個處理的就是病人的 擅抖問題，

My uncle told me that he had stopped drinking coffee or tea in public

我叔叔曾經說他為了避免尷尬，

just out of embarrassment,

已經不會在公眾場所喝咖啡。

so, well, I designed the no-spill cup.

於是我設計一個不會溢出 液體的杯子。

It works just purely on its form.

純粹是靠杯子形狀來起作用。

The curve on top deflects the liquid back inside every time they have tremors,

每次當病人擅抖時，只要有一個頂部有弧度的杯子， 就會把液體回彈到杯內，

and this keeps the liquid inside compared to a normal cup.

與一般普通杯子比較，更能令 液體保留在杯內。

But the key here is that it is not tagged as a Parkinson's patient product.

這個設計的重點是不會標籤 為這類病人的產品。

It looks like a cup that could be used by you, me, any clumsy person,

它似是一隻你和我或任何笨拙的人 都會用的杯子。

and that makes it much more comforting for them to use, to blend in.

這樣令到病人更加安心使用， 融入杜會。

So, well, one problem solved,

好，一個問題解決了。

many more to go.

還有很多尚未解決。

All this while, I was interviewing him,

這一陣子，我替他做訪問，

questioning him,

向他提出問題，

and then I realized that I was getting very superficial information,

然後我認識到我的認知 實在太膚淺，

or just answers to my questions.

或者他只回應了我的問題而已。

But I really needed to dig deeper to get a new perspective.

我一定要加深了解，希望 得到新的頭緒。

So I thought, well, let's observe him in his daily tasks,

我想不如觀察他的日常生活。

while he's eating, while he's watching TV.

看他吃東西，看電視。

And then, when I was actually observing him walking to his dining table,

跟著我正在觀察他步行到餐桌，

it struck me, this man who finds it so difficult to walk on flat land,

我驚覺他走平地也非常困難，

how does he climb a staircase?

那麼他如何爬樓梯呢？

Because in India we do not have a fancy rail that takes you up a staircase

因為印度不似一些發達國家，

like in the developed countries.

沒有優質的電動軌道 助你登上樓梯。

One actually has to climb the stairs.

所以每個人其實要靠 自己爬樓梯。

So he told me,

於是他對我說：

"Well, let me show you how I do it."

「讓我示範一次給你看， 我是怎麼做到的。」

Let's take a look at what I saw.

請看看我那時看見什麼。

So he took really long to reach this position,

他弄了很久才走到這裡，

and then all this while, I'm thinking,

這時我在想，

"Oh my God, is he really going to do it?

「天啊！他真的要爬樓梯嗎？」

Is he really, really going to do it without his walker?"

他真的，真的不用助行器 爬樓梯嗎？

And then ...

然後…

(Laughter)

（笑聲）

And the turns, he took them so easily.

而且他做轉彎的動作時， 簡直是輕而易舉。

So -- shocked?

驚奇嗎？

Well, I was too.

我也是。

So this person who could not walk on flat land

所以這個不能在平地走路的人，

was suddenly a pro at climbing stairs.

忽然變成爬樓梯專家。

On researching this, I realized that it's because it's a continuous motion.

我經過研究後，才明白 因為這是連續動作的關係。

There's this other man who also suffers from the same symptoms

又有另一位男士得到同一病癥，

and uses a walker,

他要用助行器步行，

but the moment he's put on a cycle,

但當他騎腳踏車時，

all his symptoms vanish,

所以病㿂消失了。

because it is a continuous motion.

因為這是連續的動作。

So the key for me was to translate this feeling of walking on a staircase

所以我一定要把爬樓梯 的感覺

back to flat land.

轉回到行平地。

And a lot of ideas were tested and tried on him,

我想很多方法，經過測試和 讓叔叔試用。

but the one that finally worked was this one. Let's take a look.

最後成功的就是這個方法。 請一齊看看。

(Laughter)

（笑聲）

(Applause)

（鼓掌聲）

He walked faster, right?

他行得快了，是不是？

(Applause)

（鼓掌聲）

I call this the staircase illusion,

我稱它為樓梯幻象。

and actually when the staircase illusion abruptly ended, he froze,

當樓梯幻象突然終示， 他就會僵住了。

and this is called freezing of gait.

這叫做＂步履凝凍＂。

So it happens a lot,

這種情況常常發生，

so why not have a staircase illusion flowing through all their rooms,

這樣為什麼不把樓梯幻象 佈滿所有房間，

making them feel much more confident?

讓病人增添信心呢？

You know, technology is not always it.

科技並不是一切。

What we need are human-centered solutions.

我們需要的是以人為本 去解決方法。

I could have easily made it into a projection,

我可以很容易把它變成投影，

or a Google Glass, or something like that.

或者戴谷歌眼鏡，諸如此類。

But I stuck to simple print on the floor.

但我只是把簡單的圖片 貼在地上。

This print could be taken into hospitals

我可以把這些圖片 帶到醫院，

to make them feel much more welcome.

令到醫院更受病人歡迎。

What I wish to do is make every Parkinson's patient

我希望每個柏金遜症病人

feel like my uncle felt that day.

都好像我叔叔那天的感受。

He told me that I made him feel like his old self again.

叔叔告訴我說，我令到他 回復以前的自己。

"Smart" in today's world has become synonymous to high tech,

＂聰明＂在現今的世界等同 高科技的同義詞。

and the world is only getting smarter and smarter day by day.

而世界只有日復一日， 越來越聰明。

But why can't smart be something that's simple and yet effective?

但是為什麼聰明就不可以是 簡單而實用呢？

All we need is a little bit of empathy and some curiosity,

我們只需一點同理心和好奇心，

to go out there, observe.

走到病人身邊，然後觀察他們。

But let's not stop at that.

但我們不要就此停下來。

Let's find these complex problems. Don't be scared of them.

我們要無懼害怕去尋找複雜的問題。

Break them, boil them down into much smaller problems,

把難題拆鮮，簡化為小問題，

and then find simple solutions for them.

然後替小問題找出簡單的答案。

Test these solutions, fail if needed,

必需經過失敗，才會有方案，

but with newer insights to make it better.

隨著新的動察力，日後會比現在做得更好。

Imagine what we all could do if we all came up with simple solutions.

試想想如果大家都能用上簡單解決方法，最後我們什麼都可解決。

What would the world be like if we combined all our simple solutions?

如果我們把它們合併在一起， 世界會變成怎麼樣呢？

Let's make a smarter world, but with simplicity.

讓我們一起創造一個更加聰明 但需要簡約的世界。

Thank you.

謝謝。

(Applause)

（鼓掌聲)。