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The Nurse Who Can Smell Parkinson’s | Joy Milne | TED - Video học tiếng Anh
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The Nurse Who Can Smell Parkinson’s | Joy Milne | TED
The Nurse Who Can Smell Parkinson’s | Joy Milne | TED
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Phụ đề (292)
0:04
I’m going to start out by asking you:
0:07
which superpower would you like to choose?
0:10
Would it be flying?
0:13
Would it be strength?
0:14
Would it be speed?
0:18
The national papers and media have ...
0:23
said I have a superpower.
0:28
However, I did not choose this superpower.
0:32
I was born with a nose that can diagnose.
0:40
I'm going to take you back to 1956.
0:44
[You can tell nobody!]
0:48
A long time ago.
0:50
I was a six-year-old girl
0:53
standing in front of my grandmother, grumbling.
0:57
"My friends, they all smell.
1:01
They really smell."
1:06
And in her Scottish accent,
1:08
"Now you can't be saying that."
1:11
(Laughter)
1:12
"That's no nice.
1:15
People don't smell the way we can.
1:20
My mother had the nose,
1:23
I have the nose,
1:25
now you here.
1:26
But don't you worry.
1:28
I will help you the way my mother helped me."
1:36
But she raised her voice and pointed a finger.
1:42
"You can tell nobody!
1:45
They won't like it.
1:48
You promise?"
1:51
I promised.
1:52
I nodded my head.
1:54
She gave me a cuddle and left the room.
1:59
Many years later,
2:00
I was to discover that she had just told me
2:04
I had hereditary hyperosmia,
2:08
a heightened sense of smell.
2:11
But the words
2:13
"you can tell nobody"
2:17
split me in two.
2:22
There was the nose,
2:24
sensing everything around me.
2:27
And then there was me.
2:31
But she didn't abandon me.
2:34
She helped me,
2:36
she was very understanding,
2:38
we had great fun.
2:40
We smelt everything, good and bad.
2:43
(Laughter)
2:45
It was just wonderful.
2:47
But I soon, much to my amazement,
2:52
when I was older, I realized my grandmother took a smell,
2:58
she separated it,
3:02
and there was never one smell.
3:04
It became volatiles.
3:06
Now you can all do this.
3:09
You open your petrol cap, and what do you get?
3:13
A rather nasty smell.
3:14
But you take the nozzle,
3:15
you put it in the hole,
3:17
you press the lever.
3:19
And while the smell comes out of you, doesn’t it?
3:24
It’s gasoline.
3:26
When you sit down on a Friday evening with a glass in your hand
3:31
and you think, "Oh, I'll just have a drink."
3:35
You don't just go.
3:36
You have a smell,
3:38
you relax.
3:40
So you all know about volatiles.
3:42
But the greatest example is the child with the fart.
3:48
(Laughter)
3:49
They all know what that means.
3:52
(Laughs)
3:56
However, I was to trouble my grandmother a little.
4:02
I decided to do nursing.
4:05
And she realized what the nose would experience.
4:09
I’m going to draw a picture for you:
4:12
the NHS in 1968.
4:17
Long Nightingale wards,
4:20
18 patients minimum
4:22
with five beds down the middle in winter.
4:25
We had no disposables;
4:28
metal bedpans,
4:29
metal urinals,
4:31
open sputum mugs on the top of the cabinets at the side of the bed.
4:37
We had to take those receptacles, take them into the sluice,
4:42
sometimes divide them up
4:43
and put them into vials to go off to the lab.
4:46
Or we poured them down the sluice
4:50
and the hot water would hit them,
4:52
and the nose began to realize what those volatiles were.
4:59
The diseases
5:02
that I was experiencing.
5:07
I had acquired a medical olfactory library.
5:15
I called it my nursing bag of smells.
5:23
But there was somebody at that time who was very important to me,
5:27
who came into my life.
5:29
He was my husband-to-be.
5:33
Les and I met when we were 16 at school.
5:37
And he had this wonderful male musk smell.
5:41
He really did.
5:43
He didn't wear any perfume,
5:45
he knew I was sensitive,
5:46
so he didn't wear any perfume or deodorant.
5:50
However, when he was 31,
5:53
that smell began to change,
5:57
and it worried me.
6:00
By the time he was 33,
6:05
this smell was his dominant smell.
6:08
But unknown to us,
6:11
I had diagnosed him with a disease.
6:17
My nose had diagnosed him,
6:20
and it took medicine 12 years later to catch up.
6:24
He was diagnosed with Parkinson’s disease.
6:29
It developed quite quickly,
6:33
and he retired from being a consultant anesthetist
6:37
when he was 50.
6:39
We decided to go back to Scotland,
6:43
and we were going to go to our first Parkinson's meeting.
6:48
We entered the room.
6:50
I spoke to the woman who had Parkinson's,
6:52
who was selling raffle tickets.
6:54
[I] turned into the room,
6:56
and I was hit by this overwhelming,
7:00
familiar smell.
7:04
I lied.
7:06
I made an excuse.
7:07
I ran out to the toilet,
7:10
and there, with my head on the wall,
7:13
I asked my grandmother:
7:15
"What am I going to do now?"
7:19
I took a deep breath, went back into the room
7:23
and let the nose do its work.
7:26
By the time I had left that room,
7:29
I could tell I could differentiate
7:32
between those who had Parkinson's
7:34
and those who didn't.
7:38
We left.
7:40
We went home, and I sat him down at the dining room table.
7:45
I explained what had happened,
7:47
and he looked at me,
7:49
and I reminded him of the smell
7:51
I had first encountered when he was about 31.
7:55
And I could see his face change.
7:59
He had begun to realize, as a doctor,
8:03
we perhaps had found a biomarker.
8:07
An early diagnostic indication of Parkinson's disease.
8:16
When I could not place that smell
8:21
into my nursing bag,
8:24
my nursing bag all of a sudden became complete.
8:32
When he decided he wanted to find someone to tell,
8:37
he found a Parkinson’s UK lecture in Edinburgh --
8:41
a stem cell lecture by Doctor Tilo Kunath.
8:47
It was sad.
8:48
Les was not well enough that day to come with me.
8:51
And I waited for the end of the talk on stem cells,
8:57
and I stood up, and I said:
9:00
"Why are we not using the smell of Parkinson's to diagnose it earlier?"
9:08
Total silence.
9:10
(Laughter)
9:13
Tilo said, "Could you repeat that?"
9:17
So I repeated it again.
9:19
He looked around the room,
9:20
everybody turned around, and [he said]:
9:23
"Perhaps we could talk about this later, could we?"
9:29
Tilo was busy, and I knew Les was ill.
9:31
We had a quick hello, and I left.
9:36
It was to take a while before things were moving,
9:42
but Tilo went to a dinner,
9:45
and he said to this cancer researcher
9:49
what had happened.
9:51
And the woman said to him, "Go and find that woman."
9:56
So I got this phone call through Parkinson’s UK,
10:00
and we had a quick chat about it.
10:03
And then Tilo introduced me to Professor Perdita Barran,
10:07
who is here this morning.
10:09
She is at Manchester Biotechnology Unit, just down the road in the university.
10:16
And they decided, quite rightly,
10:19
they had to separate me from anyone that had Parkinson's
10:24
because I could see the symptoms.
10:27
So they thought about it, and they thought: t-shirts.
10:33
So there were 12 people.
10:36
There were six who were controls, people without Parkinson's,
10:40
six with Parkinson's.
10:43
They wore t-shirts for 24 hours.
10:47
They weren't allowed to bathe or have any perfume on or any deodorant.
10:54
They took them off after the 24 hours, bagged them,
10:57
and sent them back to Tilo.
11:00
Tilo and I had had a discussion
11:02
that the main smell was round the back of the neck
11:05
and the face.
11:08
So they took the t-shirts, as you can see,
11:11
cut the back of the neck out,
11:13
and even to make it more awkward for me, cut them in half.
11:18
So I was presented with 24 bags.
11:23
The results were surprising.
11:26
There were three important things.
11:28
I could diagnose all the people with Parkinson's disease.
11:34
The smell indeed was not in the armpits but at the mid-back.
11:40
I had one false positive.
11:43
"Oh no," said I.
11:44
That person came back six months later and said,
11:50
"I have Parkinson's."
11:52
So I had actually pre-diagnosed somebody
11:55
in the proof of concept,
11:57
which made a huge difference.
12:00
And this launched Nose to Diagnose.
12:04
And here I am on the dual port with the GCMS machine.
12:09
I’m smelling the volatiles that were familiar whereas
12:12
the machine is smelling -- well, it isn't smelling,
12:15
it's working out the volatiles from the swab.
12:19
And we get a result at the end, which has never failed to amaze me.
12:28
We have done over 2,000 ...
12:31
total participants’ samples.
12:36
Over 200 of those were discovering what smells in Parkinson's.
12:43
Over 600 of those are understanding
12:46
why Parkinson's changes the sebum in the body.
12:51
Over 400 [are]
12:54
developing a fast five-minute diagnostic test,
12:59
and over 700 are exploratory studies to translate the test.
13:07
They've designed a very simple test,
13:09
non-invasive,
13:12
swab or Q-Tip round the face or the back of the neck.
13:17
It is then bagged, but there is a simple,
13:21
two pieces of paper description
13:23
how to do it efficiently.
13:26
And we want to put it in every hospital in the world.
13:29
And they don't need me to smell it anymore.
13:33
But that doesn't stop me.
13:35
(Laughter)
13:37
I contribute to Parkinson's all over the world.
13:40
I am part of the World Parkinson's Coalition.
13:44
I'm also an advocate for the World Parkinson's Congress,
13:49
which will be in July this year in Barcelona.
13:53
I am a founding member of the Unmet Needs for Women in Parkinson's,
13:57
which is fairly new.
14:02
And also, I'm on the YOPD Council.
14:07
The Women's Council is run by Helen Matthews
14:10
from the Cure Parkinson's Trust,
14:13
and they facilitate it.
14:15
I also do other talks, of course,
14:18
from my home to various people in the world.
14:24
And also, I am doing extra in the research field for carers.
14:30
I have actually helped to produce a course for healthcare professionals,
14:36
as I was a carer for such a long time,
14:39
to make carers aware
14:42
of the problems and the anxiety of being a carer.
14:53
Les, unfortunately,
14:56
died just after the first set of testing.
15:02
On his deathbed, he made me promise.
15:05
He made me promise that I would continue this research.
15:10
And I now realize I have fulfilled my promise to him.
15:19
However, the nose hasn't stopped.
15:24
Well, I can't stop it.
15:26
I have to breathe.
15:28
But Dr Drupad Trivedi and I
15:31
were invited to Tanzania by APOPO.
15:36
And I'm going to introduce you, as you can see, to Kennedy,
15:40
the great African pouched rat.
15:43
The rats are trained from being very young
15:46
to actually detect landmines or TB.
15:52
They are binary, however.
15:54
They say a yes or no.
15:59
They don't give any indication of the amount of infection
16:03
to actually be diagnosed.
16:07
So we are hoping [that] we did a very intensive research session,
16:11
and we gave them urine, proteomics,
16:15
sebum and sputum as well.
16:20
Now, why were Les and I so set on doing all of this?
16:26
Parkinson's is only diagnosed
16:32
at 50 percent of the neural damage in the net --
16:39
and it is irreversible.
16:44
What Les and I had hoped that a test would do --
16:50
I asked the question:
16:52
what if Les was diagnosed when he was 33?
16:57
What if we had realized the changes that were happening to him?
17:01
We could have helped him.
17:04
Instead, we didn't know what was happening to him.
17:08
What if the women who have Parkinson's,
17:12
who are misdiagnosed for many years,
17:15
could be diagnosed with a simple test?
17:18
What if the young onset Parkinson's disease, the YOPD,
17:25
they could be diagnosed earlier,
17:28
instead of having their shoulder
17:30
or their leg operated on
17:32
because of the severe pain they're suffering from?
17:36
What a difference this would make.
17:42
And what would my grandmother say?
17:46
It would be not “Don’t tell anybody.”
17:48
"Go on, lass, tell the world."
17:51
Thank you.
17:53
(Applause and cheers)
