Ep. 6: I've Become So Numb

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Welcome to M4 Medicine, mystery,
mayhem, and sometimes murder.

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I'm Andrea Marciano and RN with
35 years of experience across

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various fields.
From direct patient care in

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hospitals to home health,
geriatrics, and injury medicine,

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I face life, death, and
everything in between.

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And I'm Crystal Miller and RN
with 13 1/2 years of experience.

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My work spans home health,
Hospice, emergency care,

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geriatrics, and occupational
health.

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From the chaos of trauma based
quiet moments with patients,

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I've seen stories that defy
explanations.

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We've been friends for over 25
years and as nurses we've shared

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countless stories that have left
us and our families speechless.

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Now we're bringing those stories
and many more to you in

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medicine, mystery, mayhem, and
sometimes murder.

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Each week, we'll uncover cases
that challenge the boundaries of

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medicine, sharing the human
stories behind the science.

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From puzzling medical mysteries
to shocking real life crimes,

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we'll bring you stories that'll
leave you questioning everything

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you thought you knew while.
We're both experiencing these

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nurses.
We want to make it clear we're

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not here to give medical advice.
This podcast is about

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storytelling, education and
exploration, not diagnosing or

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treating medical conditions.
This is medicine, mystery,

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mayhem and sometimes murder.
Let's dive in.

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Hey Crystal, how are you doing?
I'm doing pretty well, a little

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tired for a Monday but other
than that pretty well.

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Well, I know before we started
recording you were talking about

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some weather changes, which I
swore we wouldn't talk about.

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But I noticed for me, I get more
tired when I had when there's a

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weather change going on, for
sure.

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Yeah.
So I think that makes a

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difference.
But well, I was just going to

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tell you about something that I
heard or saw online on The Book

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of Faces and I, I listened to
and have seen this comedian,

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Steve Hofstadter, and he's
really funny.

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I like him a lot.
And he was mentioning on his

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page that he had been doing a
show and all of a sudden there

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was someone having a medical
emergency.

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And he could see from his
position that something was

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happening.
He didn't know exactly what it

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was.
I, I think, I don't remember

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word for word what he said, but
this just was the guy was

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clearly having a problem with
like maybe he was unconscious

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and that sort of thing.
And Steve was saying how much he

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appreciated that his audience
did what need to be done for the

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emergency to play out in the
best way that it could.

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And he said it.
The whole experience was 11

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minutes and 34 seconds.
He knew that because they were

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still recording and he said that
they had a few people calling

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911 people there were assisting
people were he called out for

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doctors or nurses and they they
came to assist.

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And he said what he noticed that
that he was most impressed with

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is that people that didn't have
to do anything stayed in their

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seats and just were quiet.
The people who were assisting

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were doing that.
And he said watching from above,

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it gave him a different
perspective than if he had been

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in the crowd.
He said he was so proud that

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these folks were his fans.
And he also said that he's heard

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of shows or or heard of people
saying when they had performed,

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if something like that had
happened, the crowd might get

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grumpy.
They might say, hey, it's taking

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too long or whatever.
And instead of being

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compassionate, it, it just kind
of turned.

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Steve said that in this time
when things are difficult for a

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lot of people, he was proud that
these folks were his fans and

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that they took care of things so
nicely.

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And then they started the show
again.

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He said he stood there for a
second and wondered how how he

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could start a comedy show again
after all of that drama.

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And what he decided to do is
there it was his dog, I think

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was backstage.
So he called the dog up.

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Everyone was oohing and awning.
And he said it sort of broke the

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ice.
And then he moved on.

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He was worried he couldn't focus
enough to put a show together.

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But he and his counterparts did
their parts and it it worked out

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well.
He thought he just was really

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touched that everybody took care
of things.

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Have you ever been in an
experience where there was a big

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crowd and something happened?
The one that comes off the top

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of my head is actually not a
great big crowd, but it's the

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one that I just first thought
of.

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And that is I was in church one
Sunday when I used to go to

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church, which I don't do
anymore, for the record.

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And somebody was speaking at the
podium or the pulpit, and all of

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a sudden I just heard somebody
yelling Gideon, Gideon and

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Gideon.
And then he fell to the ground.

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And I knew the guy's name wasn't
Gideon.

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So I was so confused why this
person that was sitting behind

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him up on the stage, I don't
know what you call it, the dais

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I.
Don't know.

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Anyway, I was so confused why
she had yelled Gideon.

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It wasn't until I know it's
people helped him up, got him

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some water or whatever.
He was fine.

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But it wasn't until I was older
that I realized she had been

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yelling get him, get him get him
because she saw him starting to

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waver.
And I think what had happened

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either he had locked his knees
or just had you know, public

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speaking.
But for whatever reason he just

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fainted.
He lost consciousness and fell,

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and that's the one, for some
reason that comes to mind when

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you ask me that.
Just that's funny.

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I'm like Gideon.
Well, or the Bible perhaps, but

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either way, either way, it does
seem like an odd thing to start

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shouting.
That's funny.

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The time that I've been in a big
crowd and there were thousands

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and thousands of people at this
conference I went to, and I was

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about probably three seats
behind a woman and I happened to

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look up and I saw her sword.
She was seated, but I saw her

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kind of moving funny.
And you know, as nurses, we're

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always scanning crowds and
things like that to make sure

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nothing's going on.
But I had seen her out of

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quarter my eye and I was kind of
watching her and I was starting

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to stand up to get closer look
what was happening because

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something, it was just odd.
The movements were odd.

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So I, I got up, I was standing
up and then she passed out just

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as I was standing up.
So I got to her really fast

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because I was literally just a
few seats away from her.

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And all of a sudden somebody
else came up.

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And then apparently one of the
speakers saw there was a

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commotion going on and someone
had said get help or call help.

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And somebody had.
And then all of a sudden, the

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person at the at the the podium
said, is anyone here a nurse?

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It was a women's group.
So as a very large group of

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women, I was like, yes.
Are good.

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There were hundreds of women who
were ready to be nurses at the

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moment.
It was interesting in that

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scenario how many nurses were
responding.

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And obviously we didn't need
everyone to respond.

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To me.
It was impressive.

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And then when people realized
that things were being handled,

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they went back to their seats.
I've been in situations where

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people did not go back to their
seats and they tried to air

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quote help and actually were
adding to the chaos of the

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situation.
It turns out this woman does

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have a seizure disorder, did
have a seizure disorder.

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I have no idea who she was, but
she her friend said she does

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have a seizure disorder and was
having one of her smaller

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seizures.
So she, she was fine.

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She stayed there.
She came back out of it and

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everything was OK, but it was it
was just interesting on a lot of

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different levels to see how that
all worked.

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But that was one of the times
that I've been into in a large

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group where something like that
happened.

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That reminds me of another time
I'll tell you about really

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quickly.
And that's when I was in a

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casino here in Oklahoma and I
saw there's always a long line

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for the buffet on Saturday
nights because it's the the crab

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buffet, right?
And so I was actually, I wasn't

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standing, I was sitting in a
slot machine and I, I had right

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in front of, you know, direct
view to the line.

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And all of a sudden I just saw a
guy, elderly gentleman, probably

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80s or so, just like pop all
over, just like I say with that

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other story, just fell over.
And so instinctual left my money

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in the, in the slot machine.
You know, just my instinct was

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immediately get up and help.
Like you said, a lot of people

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were not helping and doing
stupid stuff.

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And I was like, you know, please
back up, let me take his pulse,

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let me make sure he's breathing.
And then the first responders

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for the casino got there.
And I'll tell you, I have never

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been treated poorly by a first
responder until this, this time.

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And they were so rude.
They were like, get out of the

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way, go away.
You know, we've got this.

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I was trying to give them like
the information that I had

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because I'd gotten there for,
you know, I was trying to give

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him report, I guess basically
mini report and Nope, they

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wanted nothing to do with me.
It was bizarre.

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It was bizarre.
I, I walked away being like,

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excuse me, you know, like what?
I've never ever not been

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appreciated for, you know,
rendering aid.

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Or at least acknowledged for
what information you had, right?

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Right.
We don't need a parade.

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A parade's fine, but we don't
need a parade.

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I just, I just, yeah, just say,
hey, thanks, we got this.

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Would have been fine.
Didn't have to say, didn't have

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to say anything else or even
hey, we've got this.

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And it was so strange.
Yeah, something.

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I was OK though.
Some people have different

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attitudes.
That's.

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That's.
Yeah, that happens.

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Yeah, I know.
It kind of doesn't feel great,

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which is kind of a segue into
what we're talking about today.

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Crystal, as a nurse, have you
ever noticed some people

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experience a greater or a lesser
response to pain?

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Yes, very much so.
Yes.

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And I've noticed it in my
family.

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Yeah.
Or yeah, even if it's a mother,

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because I've seen accidents or
injuries outside of home and

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even in home where people look
like they should have been just

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hysterical because it was bad
and they're just standing there.

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La, la, la.
And other times where a paper

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cut and people are just so whiny
about it.

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Like really, you've got a paper
cut?

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I know they hurt, but seriously,
let's move on.

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But that's just my compassion
showing.

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But there are people that we're
going to talk about today who

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can't feel pain.
They literally come out, don't

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feel pain.
Yeah.

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And, and we talked about people
who have varying degrees of

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feelings of pain.
And that, I think, comes more to

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how people experience things.
And one thing I looked up when I

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was getting ready to write this,
this portion of our episode was,

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do men or women experience more
pain?

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Do you know the answer?
I was sad to hear that women

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experience more pain.
I'm like, wait, what?

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But it said it didn't say that.
Women were kind of wimpier about

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it, but we generally experience
more pain.

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And I didn't go to On the Rabbit
Hole to find out why exactly,

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but they said we have more pain.
And I can think of multiple life

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events that would cause us more
pain than men and women just do

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experience more pain.
So I think most of them are

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related to being a woman.
You, you know, having, having

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menstrual cycles, having babies,
having surgeries related to

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babies, having all of the sorts
of things that we have

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throughout our lives.
Well, have you seen the, There's

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a lot of social media videos
that are floating around where a

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husband or male either get other
puts on a labor pain simulator

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or a period pain simulator and
like like the girl, you know,

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the girl in the video will be
like, OK, you know, I'm at a

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nine and this is what my periods
feel like.

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And then they'll put it on their
significant other and they're

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freaking out at like 3.
Right.

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Exactly.
And yeah, and I think that's

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part of what what I'm talking
about is that we have those

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different levels and there's
some people that truly just are

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no other way to say it, just
wimpy about being in pain.

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And not even just men or women,
although we all know what we

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00:11:49,680 --> 00:11:53,520
might say.
It's interesting.

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00:11:53,560 --> 00:11:57,040
When I, when I saw this topic
about people who can't feel

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00:11:57,040 --> 00:12:00,840
pain, I thought it was going to
be a really fun one to look up.

230
00:12:00,840 --> 00:12:03,840
And as we've talked about
before, our our version of what

231
00:12:03,840 --> 00:12:05,520
fun is might be different from
others.

232
00:12:05,520 --> 00:12:08,080
But in this case, hopefully
you'll find this interesting.

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00:12:08,440 --> 00:12:12,720
And the sources I used today
were BBC Radio 4, and it was

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00:12:12,720 --> 00:12:16,120
called Curious Serious Cases,
The Man Who Can't Feel Pain, and

235
00:12:16,120 --> 00:12:18,680
then Congenital Insensitivity,
Pain overview.

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00:12:18,680 --> 00:12:21,680
Now this was in the National
Institute of Health.

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00:12:21,920 --> 00:12:24,000
It was on what they call the
Bookshelf.

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00:12:24,000 --> 00:12:25,320
They have a lot of articles in
there.

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00:12:25,320 --> 00:12:27,320
And they're really interesting.
And one of the reasons I like

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00:12:27,320 --> 00:12:29,800
about them is I feel like
they're a good reliable source

241
00:12:29,800 --> 00:12:33,760
because it is a grouping of
medical providers who put these

242
00:12:33,760 --> 00:12:36,520
things together.
And then 60 Minutes Australia

243
00:12:36,520 --> 00:12:39,960
from 2019, Ashland Blocker, the
girl who feels no pain.

244
00:12:39,960 --> 00:12:44,200
New York Times and AP News did
one on Minnesota girl who can't

245
00:12:44,200 --> 00:12:46,800
feel battles.
They were talking about battling

246
00:12:46,800 --> 00:12:48,440
an insurance company.
I really.

247
00:12:49,040 --> 00:12:51,600
Yeah, yeah.
I won't go a lot into that, but

248
00:12:51,600 --> 00:12:54,320
I will talk about it a little
bit because it is fascinating

249
00:12:54,520 --> 00:12:57,480
how they had to address a
significant issue for this girl

250
00:12:57,880 --> 00:12:59,840
and how she was being denied
insurance for it.

251
00:13:00,040 --> 00:13:02,560
So the first thing we're going
to talk about is the article

252
00:13:02,560 --> 00:13:04,840
that the National Library of
Medicine presented.

253
00:13:04,840 --> 00:13:08,800
The first thing we need to do is
define what it is for someone

254
00:13:08,800 --> 00:13:11,960
who can't feel pain.
There is a diagnosis called

255
00:13:11,960 --> 00:13:15,560
congenital insensitivity
activity to pain or CIP, and

256
00:13:15,560 --> 00:13:18,880
it's extremely rare and it's a
genetic deformity.

257
00:13:18,880 --> 00:13:23,080
It's a, it's a phenotype that is
characterized by the inability

258
00:13:23,080 --> 00:13:27,240
to feel or perceive pain, it
says, or the absence of

259
00:13:27,240 --> 00:13:33,440
nauseoception, which is the
inability to receive the sensory

260
00:13:33,480 --> 00:13:36,240
simulation from a noxious
stimuli.

261
00:13:36,720 --> 00:13:39,120
Now, a noxious stimuli can be
anything.

262
00:13:39,440 --> 00:13:43,800
It can be touching a hot
surface, getting poked, smelling

263
00:13:43,800 --> 00:13:46,440
something.
We were talking in one episode

264
00:13:46,440 --> 00:13:49,360
about doing the sternal rub.
That's a noxious stimuli.

265
00:13:49,720 --> 00:13:53,480
Anything that most people will
respond to, they don't feel it

266
00:13:53,680 --> 00:13:57,240
because of this congenital
insensitivity to pain.

267
00:13:57,560 --> 00:14:01,480
They just don't feel it.
So when I think of that, on the

268
00:14:01,480 --> 00:14:06,440
one hand, with us sometimes
having no feeling of pain would

269
00:14:06,440 --> 00:14:08,680
be really nice.
Yeah, I mean my first.

270
00:14:08,720 --> 00:14:12,360
Instinct my first like lucky
them, but I'm sure there's I'm

271
00:14:12,400 --> 00:14:14,160
sure you're going to point out a
downside.

272
00:14:15,120 --> 00:14:17,600
There's so many downsides that I
never would have thought of

273
00:14:17,600 --> 00:14:21,000
cause on the day that I'm
feeling pain, I want that non

274
00:14:21,000 --> 00:14:22,720
feeling.
Exactly.

275
00:14:22,840 --> 00:14:25,640
Most of us, if we're going to
get that feeling, it's going to

276
00:14:25,640 --> 00:14:29,240
have to be from some sort sort
of pharmaceutical related to a

277
00:14:29,240 --> 00:14:34,040
surgery or something like that.
In this case, they even in some

278
00:14:34,040 --> 00:14:36,480
of the study, while they were
defining it and looking at it,

279
00:14:36,840 --> 00:14:40,800
they even gave these individuals
intense chemicals like the

280
00:14:40,800 --> 00:14:44,000
capsaicin that's in Chili
Peppers or cayenne Peppers, and

281
00:14:44,000 --> 00:14:47,160
they had them chew it or touch
it or whatever.

282
00:14:47,160 --> 00:14:51,480
And they did not taste the
sensation of the heat.

283
00:14:51,640 --> 00:14:55,200
They tasted that there was a
sort of taste, but they didn't

284
00:14:55,200 --> 00:14:57,920
get the heat.
And some of us can actually get

285
00:14:57,920 --> 00:15:00,920
burned, like when you're cutting
up the the pepper.

286
00:15:00,920 --> 00:15:04,560
Have you ever gotten a skin rash
or around your mouth if you were

287
00:15:04,560 --> 00:15:07,280
silly enough to do what I do and
touch your face, because we all

288
00:15:07,280 --> 00:15:09,200
do all the time.
It's wild.

289
00:15:09,200 --> 00:15:13,480
They just don't feel it from any
of this stimuli, including

290
00:15:13,480 --> 00:15:15,920
inflammation and heat.
What are our biggest warning

291
00:15:15,920 --> 00:15:17,800
signs for our bodies to stop
doing something?

292
00:15:18,400 --> 00:15:21,520
Inflammation and heat and.
Pain and pain, right?

293
00:15:21,760 --> 00:15:23,880
Yeah.
Because when we reach towards

294
00:15:23,880 --> 00:15:26,600
something that's hot, we pull
back because it's like, oh,

295
00:15:26,600 --> 00:15:27,600
that's hot.
I feel it.

296
00:15:27,600 --> 00:15:30,240
That feels warm.
Or even if I touch something

297
00:15:30,240 --> 00:15:33,760
like last night at dinner, I
was, I was moving casserole dish

298
00:15:33,760 --> 00:15:36,960
I had made some dinner in and I
touched it with the side of my

299
00:15:36,960 --> 00:15:39,600
arm that wasn't covered with a
hot pad and went out and pulled

300
00:15:39,600 --> 00:15:41,600
it away.
That's just what we do.

301
00:15:41,600 --> 00:15:43,560
That's the way the systems are
set up, right.

302
00:15:43,560 --> 00:15:47,640
And you'll find that, as you
kind of alluded to, we'll talk

303
00:15:47,640 --> 00:15:50,360
about some problems, problems
this inability to feel pain

304
00:15:50,360 --> 00:15:52,440
leads to.
One of the things is repeated

305
00:15:52,440 --> 00:15:54,000
injuries.
Yeah.

306
00:15:54,040 --> 00:15:57,360
I can only imagine, right?
Because how many times have you

307
00:15:57,360 --> 00:16:01,440
started to maybe roll your ankle
and go ow, that hurts, so try to

308
00:16:01,440 --> 00:16:04,400
straighten up well, or the time
you rolled your ankle and broke

309
00:16:04,400 --> 00:16:07,160
it, you felt the pain as you
mentioned in one of our recent

310
00:16:07,160 --> 00:16:09,880
episodes.
However, these people do not.

311
00:16:10,160 --> 00:16:11,640
So we'll talk about some of
that.

312
00:16:11,920 --> 00:16:13,760
But one of the things I wanted
to talk about was the

313
00:16:13,760 --> 00:16:18,600
characteristic findings that
people have and they're by age,

314
00:16:18,880 --> 00:16:21,520
age groupings.
So infants and young children

315
00:16:21,880 --> 00:16:26,960
have some things that there was
a picture of on online that was

316
00:16:26,960 --> 00:16:30,720
difficult to look at because
these young children have self

317
00:16:30,720 --> 00:16:34,320
mutilating injuries, mostly of
their their fingers and their

318
00:16:34,320 --> 00:16:37,480
mouths.
Because they will, especially

319
00:16:37,480 --> 00:16:41,480
once they start having teeth,
they will bite down and bite

320
00:16:41,480 --> 00:16:43,240
their tongue, but not know they
were biting it.

321
00:16:44,560 --> 00:16:48,200
Yeah, and they'll bite their
cheeks or their lips.

322
00:16:48,240 --> 00:16:52,360
One of the pictures of the lips
that it was just terrible.

323
00:16:52,800 --> 00:16:56,440
And it's just as you can
imagine, kids have bitten their

324
00:16:56,440 --> 00:16:59,320
lips off because of this
inability to feel.

325
00:16:59,560 --> 00:17:01,680
Now, I can't remember if I
mentioned it, but this is a

326
00:17:01,680 --> 00:17:04,200
very, very rare syndrome right
now.

327
00:17:04,440 --> 00:17:08,480
When I was doing the research,
it looked like one of the most

328
00:17:08,480 --> 00:17:11,920
recent was a 2022 article.
And at that point, there were

329
00:17:11,920 --> 00:17:15,800
300 people in the world that
they know that has this, they

330
00:17:15,960 --> 00:17:17,880
identified the gene.
We'll talk about this a little

331
00:17:17,880 --> 00:17:20,520
bit more later, but I believe it
was in 2016.

332
00:17:20,880 --> 00:17:23,880
So when they see some of these
injuries, they look at them and,

333
00:17:23,880 --> 00:17:26,240
and then do the genetic testing.
So they're getting some more

334
00:17:26,240 --> 00:17:28,520
information.
But Can you imagine how much

335
00:17:28,520 --> 00:17:31,120
trouble parents might be having
when their kids come around

336
00:17:31,120 --> 00:17:32,680
looking like this?
No, I.

337
00:17:32,720 --> 00:17:35,240
Can't, yeah.
I can't imagine how often they

338
00:17:35,240 --> 00:17:37,920
have Family Services called on
them and things like that and

339
00:17:37,920 --> 00:17:39,480
when the.
Parents have done absolutely

340
00:17:39,480 --> 00:17:42,520
nothing.
And the other thing is, and

341
00:17:42,520 --> 00:17:45,240
obviously we still need to be
aware for things that are being

342
00:17:45,240 --> 00:17:47,560
created by other people.
But in this case, and since it

343
00:17:47,560 --> 00:17:51,920
is so rare, the little caveat
here would be if as a person you

344
00:17:51,920 --> 00:17:54,280
see someone with these sorts of
injuries, you know, don't just

345
00:17:54,320 --> 00:17:57,520
decide is this because it's
probably not because there are

346
00:17:57,520 --> 00:18:01,160
very few people in in the world.
Some of the other injuries that

347
00:18:01,160 --> 00:18:05,360
the small children might have is
the evulsion of their teeth when

348
00:18:05,360 --> 00:18:07,040
the teeth are just sort of
pulled out.

349
00:18:07,240 --> 00:18:08,800
We'll talk about one of our
individuals.

350
00:18:08,800 --> 00:18:12,200
I'll discuss at that where they
just bit down and something so

351
00:18:12,200 --> 00:18:15,280
hard and pulled they, they
pulled their teeth out and broke

352
00:18:15,280 --> 00:18:17,720
some of them.
They also have burns due to

353
00:18:17,720 --> 00:18:21,680
impaired temperature sensation.
That is, it would be so easy to

354
00:18:21,680 --> 00:18:26,280
get burnt and and badly burnt if
you didn't feel it.

355
00:18:26,320 --> 00:18:29,640
They a lot of times have a
recurrent otitis media or ear

356
00:18:29,640 --> 00:18:34,200
infections and they may be an
indication that they have

357
00:18:34,200 --> 00:18:36,320
reduced immunity to staph
infections.

358
00:18:37,040 --> 00:18:40,480
And so one of the reasons they
lose parts is not only because

359
00:18:40,480 --> 00:18:44,320
they bite them, but because then
they become terribly, tragically

360
00:18:44,320 --> 00:18:46,240
infected.
And some of the things that we

361
00:18:46,240 --> 00:18:49,120
noticed as we talked about, they
don't feel the heat or they

362
00:18:49,120 --> 00:18:52,080
can't feel the inflammation.
The parents of these kids,

363
00:18:52,080 --> 00:18:55,600
especially the small kids, have
to really be alert all the time

364
00:18:55,600 --> 00:18:58,600
to see if anything's happened.
It brings to mind to me people

365
00:18:58,600 --> 00:19:01,520
who are diabetic and have
neuropathy since they can't feel

366
00:19:01,520 --> 00:19:04,120
their feet.
It's it's not the same process,

367
00:19:04,120 --> 00:19:07,360
but I can see it could be a
similar sort of result because

368
00:19:07,360 --> 00:19:11,920
of this potential problem with
not being able to fight staph

369
00:19:11,920 --> 00:19:14,680
infections.
They also have poor healing.

370
00:19:15,040 --> 00:19:17,640
I wondered if there was a
circulatory portion of this.

371
00:19:17,640 --> 00:19:19,840
They didn't talk about it, but I
wondered about it.

372
00:19:20,480 --> 00:19:24,600
And and older individuals.
So after they're a child, they

373
00:19:24,600 --> 00:19:28,240
can have fractures that are
painless and they may not know

374
00:19:28,240 --> 00:19:30,720
it unless there's an obvious
deviation of the bone.

375
00:19:30,880 --> 00:19:34,360
So if their bone looks OK, then
they're probably fine, right?

376
00:19:35,440 --> 00:19:38,520
But they aren't always.
Sometimes, especially if it's in

377
00:19:38,520 --> 00:19:40,880
a joint, there can be enough
soft tissue around it to help

378
00:19:40,880 --> 00:19:43,120
support it.
But that's not it still doesn't

379
00:19:43,120 --> 00:19:46,440
solve the problem.
But this is especially true for

380
00:19:46,440 --> 00:19:49,320
them to have joint damage
because of not knowing that

381
00:19:49,320 --> 00:19:51,360
there was a problem.
They can also have Bony

382
00:19:51,360 --> 00:19:54,120
deformities that are permanent
because of fracture healed

383
00:19:54,120 --> 00:19:56,720
incorrectly because they don't
know that it was broken.

384
00:19:57,640 --> 00:20:00,520
And then I know.
And then they also a lot of

385
00:20:00,520 --> 00:20:02,360
times have Spain.
Spain.

386
00:20:02,760 --> 00:20:04,120
Well.
No, it's fine.

387
00:20:06,120 --> 00:20:08,480
Fine deformities for some of the
same reasons that they can get a

388
00:20:08,480 --> 00:20:10,360
compression fracture or
something like that.

389
00:20:10,680 --> 00:20:13,680
Because maybe they've jumped off
of something and then got a

390
00:20:13,960 --> 00:20:16,840
where most of us either wouldn't
have gotten a fracture or we

391
00:20:16,840 --> 00:20:19,400
would have felt pain and have
gotten assistance for it.

392
00:20:20,000 --> 00:20:25,760
And one of the other things that
I just shudder about is all

393
00:20:25,760 --> 00:20:28,880
affected individuals are at risk
for corneal injuries because

394
00:20:28,880 --> 00:20:32,560
they can't feel it and they
don't have corneal reflexes.

395
00:20:32,720 --> 00:20:35,120
I know what that's.
Like, I mean, I don't I but you

396
00:20:35,120 --> 00:20:36,960
had.
Feedback I have had.

397
00:20:36,960 --> 00:20:40,000
Feedback that is true.
And that's just.

398
00:20:40,360 --> 00:20:43,480
I mean, I can't even imagine.
Yeah, and.

399
00:20:43,480 --> 00:20:45,840
So they'll have these
significant injuries, especially

400
00:20:45,840 --> 00:20:47,720
as infants.
And we'll talk about that with a

401
00:20:47,720 --> 00:20:50,840
couple of the people we talked
about as well, that they have

402
00:20:50,840 --> 00:20:54,560
these severe injuries and they
don't even know because as, as

403
00:20:54,560 --> 00:20:58,040
you know, many of us have had
children or ourselves that we've

404
00:20:58,040 --> 00:21:02,560
had a scratch in our eye and it
hurts so much, especially when

405
00:21:02,560 --> 00:21:05,080
we let light into it, just
severe pain.

406
00:21:05,600 --> 00:21:07,480
But they don't have that pain.
So they don't know what's

407
00:21:07,480 --> 00:21:10,480
happened because of of that.
They'll have permanent corneal

408
00:21:10,480 --> 00:21:13,680
scarring.
They'll have vision loss, of

409
00:21:13,680 --> 00:21:17,400
course, because their cornea has
gotten so damaged.

410
00:21:17,400 --> 00:21:20,880
They don't know right away.
The individual may not know

411
00:21:20,880 --> 00:21:24,200
right away that there's a real
problem until there's some issue

412
00:21:24,200 --> 00:21:27,400
with their vision.
So as they're older, it's it if

413
00:21:27,400 --> 00:21:30,440
they hadn't had the problem as
a, as a child or newborn, which

414
00:21:30,440 --> 00:21:33,440
a lot of them had, and when
they're older, they may have

415
00:21:33,440 --> 00:21:36,680
irresolvable damage by the time
they go in to get checked.

416
00:21:37,200 --> 00:21:42,120
So it's a yeah, it's wild to me.
Again, they're just not sure

417
00:21:42,120 --> 00:21:45,800
about why they have a reduced
immunity to staph infection, but

418
00:21:45,840 --> 00:21:48,800
they really noticed that it's
one of the things that caused

419
00:21:48,800 --> 00:21:50,960
some of the different most
difficult problems.

420
00:21:51,640 --> 00:21:55,240
So in order to determine if a
person has this, there's a

421
00:21:55,360 --> 00:22:01,320
physical test where the tester
will cause some physical things

422
00:22:01,320 --> 00:22:04,720
that cause discomfort like
applying pressure or heat or

423
00:22:04,720 --> 00:22:07,560
things.
And as we talked about a sternal

424
00:22:07,560 --> 00:22:11,520
rub or something like that that
someone should respond to.

425
00:22:12,000 --> 00:22:14,000
And these people do not respond
at all.

426
00:22:14,520 --> 00:22:16,520
And if they're not looking, they
don't even know what's

427
00:22:16,520 --> 00:22:17,520
happening.
Wow.

428
00:22:17,680 --> 00:22:19,960
It's pretty wild to know that
that's what they do.

429
00:22:20,360 --> 00:22:23,720
And once they determined that
they may have this, then they

430
00:22:23,720 --> 00:22:26,880
send them out for that genetic
testing I was talking about and

431
00:22:26,880 --> 00:22:31,320
find out if it is the congenital
pain insufficiency or if it is

432
00:22:31,320 --> 00:22:33,320
something else.
Because there are some other

433
00:22:33,320 --> 00:22:36,080
things I know that I was reading
about it, that sometimes people

434
00:22:36,080 --> 00:22:39,480
on the autism spectrum have a
different sensation to pain or a

435
00:22:39,480 --> 00:22:43,520
different response to pain.
Not all, but some do, and that

436
00:22:43,520 --> 00:22:46,720
can also appear a little bit
like this, but it's definitely

437
00:22:47,000 --> 00:22:49,920
less global.
These people have no sensation

438
00:22:49,920 --> 00:22:51,920
at all.
And as I said, the pictures on

439
00:22:51,960 --> 00:22:56,080
online have people with missing
parts of their fingers, missing

440
00:22:56,080 --> 00:22:59,400
parts of their lips, deformities
and things like that.

441
00:22:59,400 --> 00:23:02,080
And I just can't, can't even
imagine.

442
00:23:02,440 --> 00:23:06,080
The difficulty is there is no
consensus for treatment.

443
00:23:06,720 --> 00:23:08,280
Nobody really knows what to do
about it.

444
00:23:08,520 --> 00:23:11,160
Again, probably because it's
such a rare thing.

445
00:23:11,480 --> 00:23:14,040
It's not like everyone in the
world has it.

446
00:23:14,040 --> 00:23:17,680
So the rare things get less
attention for reasons that are

447
00:23:17,680 --> 00:23:19,920
understandable.
Because if there's 300 people in

448
00:23:19,920 --> 00:23:24,600
the whole world with this versus
200,000 in one town with

449
00:23:24,600 --> 00:23:27,280
something else, obviously
they're going to probably figure

450
00:23:27,280 --> 00:23:31,320
out the 200,000 thing.
Still watching what I saw in

451
00:23:31,320 --> 00:23:34,880
these these individuals, my
goodness, it's just

452
00:23:34,880 --> 00:23:37,520
heartbreaking.
What they do all agree with

453
00:23:37,520 --> 00:23:39,400
though, is treatment is
supportive.

454
00:23:39,840 --> 00:23:43,960
They treat whatever comes up.
They some people, especially the

455
00:23:44,160 --> 00:23:47,920
the individuals that are young,
the children, babies will be

456
00:23:47,920 --> 00:23:52,320
wrapped with gauze so their
tissues don't get hurt and

457
00:23:52,320 --> 00:23:53,640
they'll have other sorts of
things.

458
00:23:53,640 --> 00:23:58,840
One of the studies I saw had he
wore a helmet so that if he fell

459
00:23:58,840 --> 00:24:00,920
and hurt his head, it would be
protected.

460
00:24:01,040 --> 00:24:04,120
It's just just supportive, just
trying to keep them from being

461
00:24:04,120 --> 00:24:06,760
injured.
They also have more frequent

462
00:24:06,760 --> 00:24:10,360
appointments at the dentist, eye
doctor, and skin skin doctors so

463
00:24:10,400 --> 00:24:12,360
they can make sure that things
aren't getting terrible.

464
00:24:12,400 --> 00:24:15,400
Some of them do seem to have
developmental delays.

465
00:24:15,480 --> 00:24:18,320
I looked at this and they didn't
really say why.

466
00:24:18,960 --> 00:24:22,640
However I wonder if it's not
because they have so much injury

467
00:24:22,640 --> 00:24:25,120
going on and they're probably
missing school because of being

468
00:24:25,120 --> 00:24:30,120
injured and things like that.
They all have to avoid jumping

469
00:24:30,480 --> 00:24:34,080
high impact contact sports
because if they jump they can

470
00:24:34,080 --> 00:24:38,640
fracture and not know right?
They are encouraged to avoid

471
00:24:38,640 --> 00:24:42,760
pastimes that can cause injury,
blunt injury, trauma, you know,

472
00:24:42,760 --> 00:24:45,480
things like football and stuff
would be a really poor choice.

473
00:24:45,480 --> 00:24:49,400
They noticed that males with
this disorder, the CIP, who are

474
00:24:49,400 --> 00:24:54,920
older than 20 are actually
fairly rare because, yeah,

475
00:24:54,920 --> 00:24:57,800
because of, because of their
inability to feel pain, they

476
00:24:57,800 --> 00:25:02,280
tend to be greater risk takers
and they make fights and stuff

477
00:25:02,280 --> 00:25:03,200
like that.
Sure.

478
00:25:03,520 --> 00:25:08,600
And also, it's rare that a, an
individual with the CIP lives

479
00:25:08,600 --> 00:25:11,360
beyond adolescence because
they're getting these injuries

480
00:25:11,800 --> 00:25:15,560
that are so they can be so
catastrophic, but they don't

481
00:25:15,560 --> 00:25:17,760
know a lot of times until it's
too late.

482
00:25:18,000 --> 00:25:20,120
And there's someone I'll be
talking about like that.

483
00:25:20,480 --> 00:25:21,680
And obviously I was going to
ask.

484
00:25:21,680 --> 00:25:25,600
You what the what the mortality
rate was or life expectancy was.

485
00:25:25,600 --> 00:25:27,120
So yeah.
I'm not surprised.

486
00:25:27,760 --> 00:25:30,320
Yourself so much and, you know,
so badly.

487
00:25:30,400 --> 00:25:32,920
Yeah.
They're obviously avoid advised

488
00:25:32,920 --> 00:25:36,400
to avoid really hot or cold
environments because they cannot

489
00:25:36,840 --> 00:25:40,800
tell and their body can still
self regulate temperature.

490
00:25:41,120 --> 00:25:44,480
But if the person has stayed out
too long lung in either hot or

491
00:25:44,480 --> 00:25:48,240
cold, they can have physical
implications that another person

492
00:25:48,240 --> 00:25:51,960
that has the feelings and
sensations would not do.

493
00:25:52,200 --> 00:25:54,440
And one of the other things
about these individuals is they

494
00:25:54,440 --> 00:25:57,920
tend to sweat less for reasons
nobody's really clear on.

495
00:25:58,080 --> 00:26:00,600
But so if they're in a really
hot environment and they're not

496
00:26:00,600 --> 00:26:03,760
able to sweat, they're going to
have a harder time regulating

497
00:26:03,760 --> 00:26:06,360
their temperature as well.
It's just another one of the

498
00:26:06,360 --> 00:26:08,600
things, it's so.
Interesting how genes work

499
00:26:08,600 --> 00:26:12,040
because the fact that you have
this gene that mutated and it

500
00:26:12,520 --> 00:26:15,600
makes you insensitive to pain,
but then it also makes you

501
00:26:16,000 --> 00:26:19,480
vulnerable to spath and it
always also makes you sweat less

502
00:26:19,720 --> 00:26:21,680
and all these things that are
like wait what?

503
00:26:22,480 --> 00:26:24,880
All coming from this.
One genetic mutation, you know?

504
00:26:25,240 --> 00:26:27,640
Yeah, that.
They've identified because also

505
00:26:27,640 --> 00:26:30,600
there's a possibility there's
other mutations that they've got

506
00:26:30,880 --> 00:26:32,360
that they haven't put together
yet.

507
00:26:32,520 --> 00:26:35,320
But right now what they're
saying is, is that one portion?

508
00:26:35,520 --> 00:26:37,880
But yeah, just.
And I was telling Max, my

509
00:26:37,880 --> 00:26:42,080
partner for those who don't know
him last night, that it's

510
00:26:42,080 --> 00:26:48,440
basically miraculous that anyone
is born, A, reasonably intact

511
00:26:49,480 --> 00:26:54,200
and B lives, you know, more than
a few years because of all the

512
00:26:54,200 --> 00:26:56,360
possible things that can happen.
It's just wild.

513
00:26:56,360 --> 00:26:58,200
It is.
I mean, do you think about how

514
00:26:58,200 --> 00:27:01,440
do you, how do you get somebody
with this condition out of

515
00:27:01,560 --> 00:27:05,160
infancy, out of toddler hood?
Good heavens, you know exactly.

516
00:27:05,480 --> 00:27:08,560
Again, one of the reasons they
don't live past or adolescence

517
00:27:08,560 --> 00:27:11,920
mostly and many times, as you
kind of are alluding to, it's

518
00:27:11,920 --> 00:27:15,840
not even past toddler hood.
Because if you think of the

519
00:27:15,840 --> 00:27:21,200
things that the kids we know
have had injuries, if we hadn't

520
00:27:21,200 --> 00:27:23,760
witnessed it, they would come
and tell us, right?

521
00:27:23,760 --> 00:27:26,240
Or their siblings would tell us
they had pain, something was

522
00:27:26,240 --> 00:27:28,640
happening, they were crying,
right?

523
00:27:28,640 --> 00:27:32,720
These these infants don't even
cry usually because they don't

524
00:27:32,720 --> 00:27:35,520
feel anything.
The kids, a toddler, they fall

525
00:27:35,520 --> 00:27:39,520
over all the time just based on
their Physiology and the fact

526
00:27:39,520 --> 00:27:42,680
that they walk into things
everywhere and they could get

527
00:27:42,680 --> 00:27:44,960
all kinds of injuries.
And Can you imagine the internal

528
00:27:44,960 --> 00:27:46,760
injuries that could happen that
no one would go about?

529
00:27:47,000 --> 00:27:49,640
Like, yeah, do you?
Know if they feel you know if

530
00:27:49,640 --> 00:27:53,440
they feel hunger, pings.
And I'm saying PANGS, not pings,

531
00:27:54,000 --> 00:27:55,800
pings I.
Understand and some of them

532
00:27:55,800 --> 00:27:59,680
cannot some of them can't feel
hunger, they don't feel sleep

533
00:27:59,960 --> 00:28:02,880
they're just whole lives would
be just be so different and

534
00:28:02,880 --> 00:28:06,040
dislike any disorders on a a
scale.

535
00:28:06,040 --> 00:28:08,440
You know some people kind of
want to say the word spectrum,

536
00:28:08,440 --> 00:28:10,960
but everybody thinks of autism
when we say spectrum anymore

537
00:28:10,960 --> 00:28:12,560
right but things are on
spectrums.

538
00:28:12,560 --> 00:28:14,600
There's just some are very
affected.

539
00:28:14,600 --> 00:28:18,240
Some are minorly affected but to
me as I was reading all this

540
00:28:18,240 --> 00:28:22,000
information even the people who
are minorly and affected, it's

541
00:28:22,000 --> 00:28:25,920
not a minor thing at all right.
One of the things I was thinking

542
00:28:25,920 --> 00:28:28,960
about was what about pregnancy?
So say, say a woman does live

543
00:28:28,960 --> 00:28:32,520
past infancy or adolescence and
they become pregnant.

544
00:28:32,560 --> 00:28:34,560
Is it a regular pregnancy or
what?

545
00:28:35,120 --> 00:28:39,520
Well, the information from the
National Medical Society there

546
00:28:39,520 --> 00:28:43,000
said that women with CIP are
able to become pregnant and bear

547
00:28:43,000 --> 00:28:46,320
children normally.
However, the staff must be made

548
00:28:46,320 --> 00:28:50,000
aware of the diagnosis because
labor may physically progress

549
00:28:50,000 --> 00:28:51,840
normally, but they won't be able
to tell.

550
00:28:51,840 --> 00:28:55,800
But other senses such as stretch
and touch are intact, so maybe

551
00:28:55,800 --> 00:28:58,800
they'll feel the changes in
their cervix, but they won't

552
00:28:58,800 --> 00:29:01,280
feel the labor pains or
something along that line.

553
00:29:01,280 --> 00:29:03,280
This is something that we'll
talk about in a minute.

554
00:29:03,280 --> 00:29:06,880
But if a woman has any kind of
fracture, which can happen

555
00:29:06,880 --> 00:29:11,480
during pregnancy, whether it's
the coccyx tailbone or a pelvic

556
00:29:11,480 --> 00:29:14,400
fracture or some other kind of
fracture that they're on that

557
00:29:14,400 --> 00:29:19,000
happens during pregnancy, the
woman would know right away in a

558
00:29:19,000 --> 00:29:22,280
typical presentation.
But someone with CIP wouldn't

559
00:29:22,280 --> 00:29:25,480
know.
Some fractures can cause tearing

560
00:29:25,480 --> 00:29:27,920
of veins and arteries which can
become fatal.

561
00:29:28,040 --> 00:29:31,560
Also there's some sensations
that are pre and post delivery

562
00:29:31,560 --> 00:29:35,040
that women, if they know
something is happening, they can

563
00:29:35,040 --> 00:29:37,280
feel it.
So they can report now these

564
00:29:37,280 --> 00:29:40,840
women, if they started to have
any kind of changes that were

565
00:29:40,840 --> 00:29:43,520
untoward, they couldn't report
it because they didn't know it.

566
00:29:43,520 --> 00:29:46,560
The staff, especially in these
situations, really need to know

567
00:29:46,640 --> 00:29:50,040
that this diagnosis is there.
So one of the things that they

568
00:29:50,040 --> 00:29:54,600
brought up too is individuals
with CIP learn that other people

569
00:29:54,600 --> 00:29:56,440
have pain.
They don't experience it.

570
00:29:56,440 --> 00:30:00,000
So if if a person doesn't know,
they don't know, right?

571
00:30:00,600 --> 00:30:01,640
A.
Fantasia baby.

572
00:30:02,320 --> 00:30:05,840
That's right.
And and you didn't know, you

573
00:30:05,840 --> 00:30:08,880
couldn't visualize things until
somebody told you about it.

574
00:30:09,400 --> 00:30:11,840
Exactly.
So you had to experience that

575
00:30:11,840 --> 00:30:15,240
way.
And then people who have the CIP

576
00:30:15,520 --> 00:30:17,040
will learn that others have
pain.

577
00:30:17,040 --> 00:30:20,560
But I would think that that
wouldn't become a thing until

578
00:30:20,560 --> 00:30:23,120
they were older.
Like when a person starts

579
00:30:23,120 --> 00:30:25,160
becoming more conscious of their
environment or their

580
00:30:25,160 --> 00:30:27,880
surroundings.
So they learned that other

581
00:30:27,880 --> 00:30:31,560
people have the pain.
So they learn to respond because

582
00:30:31,680 --> 00:30:35,680
they see somebody fall down and
they go, oh, that could hurt.

583
00:30:36,280 --> 00:30:39,800
And they were able to respond.
And some people asked if that

584
00:30:39,800 --> 00:30:43,320
was a problem with empathy.
It's hard to say because if they

585
00:30:43,320 --> 00:30:45,560
learn that somebody has
something and then they respond

586
00:30:45,560 --> 00:30:47,160
to me, that's showing a lot of
empathy.

587
00:30:47,760 --> 00:30:50,520
When a person has not yet
experienced that sort of thing,

588
00:30:50,600 --> 00:30:52,560
it also.
Reminds me of like when my mom,

589
00:30:52,560 --> 00:30:54,640
she didn't, I don't know, maybe
she did do this with us, but I

590
00:30:54,640 --> 00:30:56,080
don't think she did.
I think it was something she

591
00:30:56,080 --> 00:30:58,240
learned later in life.
But we were having babies and

592
00:30:58,240 --> 00:31:01,040
had toddlers and stuff and the
kids would fall down.

593
00:31:01,160 --> 00:31:05,560
She wouldn't go, oh, oh, you OK?
She'd say, what did she say that

594
00:31:05,560 --> 00:31:07,480
I can't remember.
She'd say something like, oops,

595
00:31:07,480 --> 00:31:09,960
a Daisy or, you know, Bingo.
That was it.

596
00:31:09,960 --> 00:31:12,440
Bingo.
And just make it nothing.

597
00:31:12,440 --> 00:31:16,040
The kid, if the kid doesn't know
that he should, he or she, they

598
00:31:16,200 --> 00:31:19,200
should have a sad reaction.
Typically they don't not they're

599
00:31:19,200 --> 00:31:21,240
truly hurt and they don't have
CPI.

600
00:31:22,320 --> 00:31:23,520
And that's a different story,
right?

601
00:31:23,520 --> 00:31:27,880
But like, we tend to
accidentally train our kids.

602
00:31:27,880 --> 00:31:30,600
Like you're saying, like if I
fall down, I'm hurt, period,

603
00:31:30,640 --> 00:31:33,080
full stop.
No, no other considerations.

604
00:31:33,080 --> 00:31:34,520
Right.
So it just reminds me of that.

605
00:31:34,600 --> 00:31:36,840
Yeah, it's true.
I, I know that Giuliana was

606
00:31:36,840 --> 00:31:39,440
about two and a half one time
and we, we're going to see

607
00:31:39,440 --> 00:31:42,320
Santa.
He was in a gym and so she was

608
00:31:42,320 --> 00:31:45,120
so excited to see him.
She was running across the gym

609
00:31:45,120 --> 00:31:48,960
floor and she had been with her
father, I believe, and was

610
00:31:48,960 --> 00:31:53,920
running towards me where I was
near Santa and she slipped and

611
00:31:53,920 --> 00:31:58,160
then she slid on her belly just
across the gym floor like

612
00:31:58,160 --> 00:32:00,800
someone had just bowled with
her, you know, just slid her

613
00:32:00,800 --> 00:32:04,120
right across.
And she, she was coming towards

614
00:32:04,120 --> 00:32:07,440
me pretty fast and she had this
look on her face like I think

615
00:32:07,440 --> 00:32:09,120
I'm scared.
I'm not really sure.

616
00:32:09,520 --> 00:32:13,520
And so I, I squatted down and I
put my hands out and made the

617
00:32:13,520 --> 00:32:17,360
safe motion with for baseball.
And I said, you're safe.

618
00:32:17,360 --> 00:32:19,320
And I said, you're safe.
Good job.

619
00:32:19,640 --> 00:32:22,920
And she looked at me like, huh.
And then she just got up and saw

620
00:32:22,920 --> 00:32:24,320
Santa.
But it could have gone

621
00:32:24,320 --> 00:32:27,120
differently, like you said,
because if I had said, oh, my

622
00:32:27,120 --> 00:32:28,760
goodness.
Oh, and the people who are

623
00:32:28,760 --> 00:32:31,640
around me saw me and started
clapping because they thought it

624
00:32:31,640 --> 00:32:34,640
was great and very funny and she
was fine.

625
00:32:34,640 --> 00:32:36,520
She really hadn't been hurt at
all.

626
00:32:36,800 --> 00:32:39,760
But she would have.
She was in that moment deciding

627
00:32:39,760 --> 00:32:42,120
whether she should be hurt.
And this kind of leads to

628
00:32:42,120 --> 00:32:46,080
another thing that people with
CIP have as children.

629
00:32:46,440 --> 00:32:48,840
They learn to simulate having
pain.

630
00:32:48,920 --> 00:32:52,040
If they're playing say football
or something like that and

631
00:32:52,040 --> 00:32:56,040
they're tackled, then they may
act like they got hurt even

632
00:32:56,040 --> 00:32:58,080
though they they don't have
pain.

633
00:32:58,320 --> 00:32:59,960
So I thought that was kind of
interesting.

634
00:33:00,040 --> 00:33:03,920
They might kind of fake it to
get the response sympathy or

635
00:33:03,920 --> 00:33:05,880
whatever.
Right, right, right.

636
00:33:06,240 --> 00:33:08,680
And then what was would be
interesting is they actually did

637
00:33:08,680 --> 00:33:10,200
get hurt and didn't say
anything.

638
00:33:10,200 --> 00:33:12,480
So I don't know.
It's very complicated in the not

639
00:33:12,480 --> 00:33:14,560
to mention.
Just complicated being a child.

640
00:33:15,440 --> 00:33:17,560
Oh, goodness.
That's right.

641
00:33:17,880 --> 00:33:21,280
Well, in the BBC article that I
was reading, it talked about a

642
00:33:21,280 --> 00:33:24,920
man named Steve Pete.
And he actually lives here in

643
00:33:24,920 --> 00:33:27,840
Washington, not far from where I
live in Washington state.

644
00:33:28,240 --> 00:33:32,840
And at the time of his interview
with these folks, he was 37.

645
00:33:33,560 --> 00:33:36,680
And this has been a while ago.
They said at that point, this

646
00:33:36,680 --> 00:33:40,040
was in 2020.
So at that point he had he went

647
00:33:40,040 --> 00:33:42,720
nine months before he realized
he fractured his back.

648
00:33:43,240 --> 00:33:46,360
Wow.
And it was not an insignificant

649
00:33:46,360 --> 00:33:51,240
fracture either.
He said he had noticed that at

650
00:33:51,240 --> 00:33:55,000
nine month mark after what he
realized was probably the

651
00:33:55,000 --> 00:33:58,320
causative factor then, and I'll
tell you a little bit about that

652
00:33:58,320 --> 00:34:01,240
in a second, but he said he
noticed he had tingling in one

653
00:34:01,240 --> 00:34:05,040
of his arms.
And he said he his quote was I

654
00:34:05,040 --> 00:34:07,120
started to have a weird
sensation in my left arm.

655
00:34:07,480 --> 00:34:09,480
It was kind of numb by my
shoulder blade.

656
00:34:09,520 --> 00:34:12,960
He just kind of, this went on
for a little while and months

657
00:34:12,960 --> 00:34:15,800
went by and he decided, well, I
better get an X-ray because here

658
00:34:15,800 --> 00:34:18,760
he is 37, which is unusual for
this syndrome.

659
00:34:19,360 --> 00:34:21,800
And he thought, well, I better
check it out because this is

660
00:34:21,800 --> 00:34:25,080
sort of weird.
The specialist who looked at the

661
00:34:25,080 --> 00:34:28,159
X-ray said, have you been in a
wreck recently, like a car

662
00:34:28,159 --> 00:34:30,440
wreck?
And he said, he said no.

663
00:34:30,560 --> 00:34:34,400
And the provider he was talking
to said this kind of injury to

664
00:34:34,400 --> 00:34:37,920
three vertebrae that were
clearly fractured could have

665
00:34:37,920 --> 00:34:40,600
only been caused by some sort of
physical trauma.

666
00:34:40,600 --> 00:34:43,400
I mean, not just not just a
compression fracture because I

667
00:34:43,400 --> 00:34:47,199
jumped off something too high,
but a real, real fractures in

668
00:34:47,199 --> 00:34:50,639
these.
And he said he, he remembered he

669
00:34:50,639 --> 00:34:55,040
was out in the snow and he went
running down the hill in an

670
00:34:55,040 --> 00:34:56,719
inner tube and he jumped onto
it.

671
00:34:57,160 --> 00:35:00,960
And he said he did a scorpion.
And I had never heard this

672
00:35:00,960 --> 00:35:04,040
reference, but it said when his
legs went over the back of his

673
00:35:04,040 --> 00:35:04,960
head.
And so.

674
00:35:04,960 --> 00:35:07,120
Oh my.
God, I know.

675
00:35:07,400 --> 00:35:11,680
So when he hit it, his legs went
up in a just a really sharp way,

676
00:35:11,680 --> 00:35:15,720
I guess, and he hit the ground
and all of this and he said he

677
00:35:15,720 --> 00:35:18,160
hadn't felt anything.
And this kind of injury can

678
00:35:18,160 --> 00:35:19,720
actually be immediately
crippling.

679
00:35:19,720 --> 00:35:22,240
He could have become at least a
paraplegic.

680
00:35:22,760 --> 00:35:24,920
I didn't see what level of
fracture it was.

681
00:35:24,920 --> 00:35:28,080
It never mentioned it.
I don't think he said that he

682
00:35:28,080 --> 00:35:30,640
just didn't know, but then
finally thought he better check

683
00:35:30,640 --> 00:35:36,680
it out because things are odd.
Wildly, unbelievable, wildly

684
00:35:36,680 --> 00:35:38,760
something.
I know it is.

685
00:35:38,760 --> 00:35:41,120
As I was reading this research,
I was just like, Oh my goodness,

686
00:35:41,120 --> 00:35:43,960
I'm so glad when I think I don't
want pain.

687
00:35:43,960 --> 00:35:47,040
I'm glad it's not like this.
Maybe there's a happy medium.

688
00:35:47,040 --> 00:35:49,160
We'll actually talk about that
in just a few minutes.

689
00:35:49,200 --> 00:35:52,920
What Steve said is when he was a
baby, his mother had taken him

690
00:35:52,920 --> 00:35:54,960
to the doctor because he was
just acting.

691
00:35:55,320 --> 00:35:57,720
He was just different.
His parents noticed.

692
00:35:57,720 --> 00:35:59,680
He wasn't crying.
He wasn't really responding

693
00:35:59,680 --> 00:36:01,920
anything.
He said his parents noticed that

694
00:36:01,920 --> 00:36:04,320
there was a serious problem with
him.

695
00:36:04,320 --> 00:36:07,680
And what it was is that he said
started teething and he had

696
00:36:07,680 --> 00:36:10,280
chewed off a significant portion
of his tongue.

697
00:36:10,760 --> 00:36:12,040
Oh my God.
I know.

698
00:36:12,040 --> 00:36:16,040
Can you, I mean, that would be a
serious problem that his parents

699
00:36:16,080 --> 00:36:18,360
obviously said, well, this isn't
right.

700
00:36:18,680 --> 00:36:22,600
So they took him to the doctor
and the baby's, excuse me, the

701
00:36:22,600 --> 00:36:26,600
doctor solution to find out if
there was some sort of problem

702
00:36:26,600 --> 00:36:28,600
if he couldn't feel, because
that's what they were starting

703
00:36:28,600 --> 00:36:29,760
to wonder.
Can he just not feel that he's

704
00:36:29,760 --> 00:36:32,800
doing this?
Dude, Hunt his The doctor held a

705
00:36:32,800 --> 00:36:37,600
Bunsen burner by his skin on his
foot until his skin blistered

706
00:36:37,960 --> 00:36:40,760
and Steve did not respond.
I know this is a problem on so

707
00:36:40,760 --> 00:36:44,440
many levels, not the least of
which is, man, if, if it's even

708
00:36:44,440 --> 00:36:46,480
not feeling, he's not feeling.
You don't have to blister his

709
00:36:46,480 --> 00:36:46,920
skin.
Yeah.

710
00:36:47,240 --> 00:36:49,840
That's a salt bro.
It is now.

711
00:36:50,080 --> 00:36:52,440
This was in the 80s so all
things were fair.

712
00:36:52,520 --> 00:36:55,920
This was 1981.
Genetic testing wasn't available

713
00:36:55,960 --> 00:36:58,840
at all and especially not for
something this specific.

714
00:36:58,840 --> 00:37:02,600
The doctors just said they
tested him to see if they had

715
00:37:02,600 --> 00:37:05,280
any response and he didn't.
They did a variety of testing.

716
00:37:05,520 --> 00:37:09,680
He had no reaction to the
Bunsenberger incident, needles

717
00:37:09,680 --> 00:37:13,160
being run up and down his spine
and all sorts of things.

718
00:37:13,240 --> 00:37:18,360
And what they what they noticed
is there had been other people

719
00:37:18,360 --> 00:37:21,600
with this congenital and
sensitivity to pain, but they

720
00:37:21,600 --> 00:37:25,040
still didn't know how or why.
And the doctor did say he felt

721
00:37:25,040 --> 00:37:28,240
like that was probably the
issue, but couldn't prove it one

722
00:37:28,240 --> 00:37:29,440
way or another.
She was.

723
00:37:29,520 --> 00:37:33,160
Steve said that he had broken
around 80 bones in his body just

724
00:37:33,160 --> 00:37:36,960
through the years.
He also noted that the extreme

725
00:37:36,960 --> 00:37:39,560
pain was something he didn't
feel at all.

726
00:37:40,040 --> 00:37:43,560
And Professor Bennett was one of
the people involved in one of

727
00:37:43,560 --> 00:37:46,400
the studies about this.
And he said this quote was

728
00:37:46,400 --> 00:37:49,600
interesting to me as acute pain,
this pain from a burning hot

729
00:37:49,600 --> 00:37:52,080
stove or putting your limb in an
extreme position where you might

730
00:37:52,080 --> 00:37:54,920
break.
It is incredibly important to

731
00:37:54,920 --> 00:37:59,600
avoid injury.
And it's incredibly important.

732
00:37:59,600 --> 00:38:01,960
We don't even think about how
important it is because we just

733
00:38:01,960 --> 00:38:04,040
do it.
But then he goes on to say

734
00:38:04,120 --> 00:38:06,600
because those suffering from
Steve's condition don't feel

735
00:38:06,600 --> 00:38:09,880
that acute pain, they offer
experienced lots of fractures,

736
00:38:09,880 --> 00:38:12,320
particularly when they're
toddlers and growing up.

737
00:38:12,360 --> 00:38:15,560
Again, we talked a little bit
about how we have both been in

738
00:38:15,560 --> 00:38:18,200
situations where we felt
something that was hurting.

739
00:38:18,200 --> 00:38:23,040
So we stopped, right?
I mean, yeah, we stopped, but

740
00:38:23,040 --> 00:38:26,120
they just don't necessarily
because they just don't feel it.

741
00:38:26,240 --> 00:38:29,720
Steve said that his a lot of his
child was spent childhood was

742
00:38:29,720 --> 00:38:32,920
spent in the hospital.
His longest stay was 14 months.

743
00:38:33,320 --> 00:38:37,240
Now we do have to remember this
was in the 80s and 90s.

744
00:38:37,240 --> 00:38:40,080
So people stayed in the hospital
for a lot longer than they do

745
00:38:40,080 --> 00:38:42,600
now.
He was in there for for 14

746
00:38:42,600 --> 00:38:44,560
months and he said all the
hospital staff knew him.

747
00:38:45,240 --> 00:38:48,840
And one of the one of the
questions he was asked is does

748
00:38:48,840 --> 00:38:52,240
his inability to feel pain make
him more of a risk taker?

749
00:38:52,800 --> 00:38:58,000
And he said definitely his quote
was as a child, you don't really

750
00:38:58,000 --> 00:39:00,200
care about long term effects of
injuring yourself.

751
00:39:00,520 --> 00:39:03,800
You don't think that far ahead.
He said you get this.

752
00:39:03,920 --> 00:39:06,840
Oh my goodness, jumping on a
bicycle and just taking off down

753
00:39:06,840 --> 00:39:09,200
a steep hill with no safety
equipment on or trying to hit a

754
00:39:09,200 --> 00:39:11,720
wooden ramp or risks that Steve
would just take readily as a

755
00:39:11,720 --> 00:39:13,960
child.
He recalled how he would jump

756
00:39:13,960 --> 00:39:17,960
out of trees or place mattresses
on the ground and launch himself

757
00:39:17,960 --> 00:39:21,800
from the roof of their house.
Jumping off roof off from high

758
00:39:21,800 --> 00:39:25,360
places, he said, is probably the
most damage I've done to my body

759
00:39:25,360 --> 00:39:27,160
when it comes to broken bones.
Wow.

760
00:39:28,600 --> 00:39:30,320
Well, and you know he's fighting
a couple things.

761
00:39:30,520 --> 00:39:35,280
One is not being able to feel
pain and the other is the, the a

762
00:39:35,400 --> 00:39:39,520
lot of kids, especially boys,
will tend to do these higher

763
00:39:39,520 --> 00:39:41,440
risk activities.
They'll tend to want to show off

764
00:39:41,440 --> 00:39:45,080
and look how tough I am.
And that can lead to all these

765
00:39:45,080 --> 00:39:47,360
fractures.
So Steve said that he had to

766
00:39:47,360 --> 00:39:49,440
establish a new alarm system, if
you will.

767
00:39:49,800 --> 00:39:52,040
He knew he wouldn't feel the
pain.

768
00:39:52,520 --> 00:39:55,080
So he learned to not to do some
things.

769
00:39:55,080 --> 00:39:58,080
He learned not to touch the
stove, always slice food away

770
00:39:58,080 --> 00:40:02,720
from himself because whoopsies.
How many times have you tipped

771
00:40:02,720 --> 00:40:05,280
the?
Chip the tip of your fingernail

772
00:40:05,280 --> 00:40:07,560
when you slice too close to your
finger, but you felt it so you

773
00:40:07,640 --> 00:40:10,480
didn't do it again.
Well, I know I have, and I've

774
00:40:10,480 --> 00:40:13,240
even sliced my finger.
Just chewing off a hangnail,

775
00:40:13,240 --> 00:40:15,280
right?
And you just bite one bite too

776
00:40:15,280 --> 00:40:16,480
much, right?
And.

777
00:40:16,480 --> 00:40:18,760
Then you like a long direction,
right?

778
00:40:21,120 --> 00:40:23,640
Yeah.
And so he so he had no warning

779
00:40:23,640 --> 00:40:25,600
system, so he just had to learn
other things.

780
00:40:25,600 --> 00:40:29,000
He said he was looking for other
evidence to see if his body had

781
00:40:29,000 --> 00:40:32,040
been damaged.
He said when the last fracture

782
00:40:32,040 --> 00:40:36,800
he had in his foot, he knew
something was wrong because he

783
00:40:36,800 --> 00:40:39,840
had, he had broken his foot and
he could tell something was

784
00:40:39,840 --> 00:40:42,960
wrong the next day because it
was swollen and abnormally warm.

785
00:40:43,120 --> 00:40:45,040
But he couldn't feel the pain of
the fracture.

786
00:40:45,680 --> 00:40:49,200
But in his case, he could feel
the swelling and the warmth.

787
00:40:49,200 --> 00:40:52,240
So I don't know if he felt the
warmth in his own foot or if he

788
00:40:52,240 --> 00:40:54,280
felt it, say, with his hand or
something like that.

789
00:40:54,280 --> 00:40:57,720
I'm not really sure.
And in his case of his fracture,

790
00:40:57,720 --> 00:41:01,280
he felt the sort of tingness,
tingling or numbness.

791
00:41:01,920 --> 00:41:04,960
So one of the things you asked
me or said that we probably

792
00:41:04,960 --> 00:41:07,160
would talk about the downsides
of not having pain.

793
00:41:07,560 --> 00:41:09,240
And there are a lot of
downsides.

794
00:41:09,240 --> 00:41:12,000
Some of the things we've talked
about is that fractures and

795
00:41:12,000 --> 00:41:14,880
things like that occur.
He is like some of the other

796
00:41:14,880 --> 00:41:17,200
people where there are some of
the sensations, like I said,

797
00:41:17,200 --> 00:41:20,080
that there is some uncomfortable
pressure or something like that.

798
00:41:20,560 --> 00:41:23,520
But he also said because he
doesn't feel pain and it gets

799
00:41:23,520 --> 00:41:27,320
injured so much that it's very
taxing to recover.

800
00:41:27,320 --> 00:41:29,720
It's a lot of stress and strain
on the body to recover from

801
00:41:29,720 --> 00:41:33,040
these injuries, especially if
they don't know about them.

802
00:41:33,120 --> 00:41:35,920
They may not take precautions
that most of us would slow down

803
00:41:35,920 --> 00:41:38,000
or something like that to
recover.

804
00:41:38,000 --> 00:41:41,440
So their bodies are kind of
always fighting to recover from

805
00:41:41,440 --> 00:41:43,600
something.
And that's just wild.

806
00:41:43,600 --> 00:41:47,840
And something that that I saw on
several of these things is that

807
00:41:48,280 --> 00:41:50,600
there's also the constant
vigilance.

808
00:41:50,600 --> 00:41:53,840
A person who has the syndrome
has to always watch out.

809
00:41:53,840 --> 00:41:57,320
They have to make sure they
don't run into things that that

810
00:41:57,320 --> 00:42:02,040
they don't fall down, that they
if they do these things, that

811
00:42:02,040 --> 00:42:04,640
they have to check themselves to
make sure that they're OK.

812
00:42:05,040 --> 00:42:07,840
They have to look at what risk
they might come into because

813
00:42:08,080 --> 00:42:11,440
they can only tolerate a certain
amount that they're sure of

814
00:42:11,440 --> 00:42:14,200
before they might get injured.
So it's just, I could see it

815
00:42:14,200 --> 00:42:16,640
would just really be seriously
stressful.

816
00:42:16,640 --> 00:42:19,520
I, I just don't know.
And then the next individual

817
00:42:19,560 --> 00:42:21,800
that I wanted to talk about is
Ashlyn Blocker.

818
00:42:21,800 --> 00:42:25,760
She was interviewed and her
family for a few things, but the

819
00:42:25,760 --> 00:42:29,440
main thing I saw was 60 minutes
in Australia and she's actually

820
00:42:29,440 --> 00:42:32,120
an American.
And I'm not really sure why she

821
00:42:32,120 --> 00:42:35,960
was with that, but this was put
out in that format.

822
00:42:35,960 --> 00:42:38,680
And then also there was an
article in the New York Times

823
00:42:38,680 --> 00:42:41,480
about her by an author named
Justin Hackett.

824
00:42:41,760 --> 00:42:45,080
And this was in 2012.
And I found his article

825
00:42:45,080 --> 00:42:47,920
fascinating.
I liked his article because it

826
00:42:47,920 --> 00:42:51,080
was very informative, but I was
also really interesting to read.

827
00:42:51,080 --> 00:42:54,680
And, and anyway, if you want to
look at any more of this, that

828
00:42:54,680 --> 00:42:59,400
article by Justin Hackett
Heckert, I'm sorry, was was very

829
00:42:59,400 --> 00:43:01,440
good.
That'll be on our notes.

830
00:43:02,080 --> 00:43:07,040
So the 60 minutes segment and
this article first are talking

831
00:43:07,040 --> 00:43:11,880
about is that she was in the
kitchen, Ashlyn was, and she was

832
00:43:11,960 --> 00:43:16,000
stirring ramen noodles and the
spoon slipped into the water.

833
00:43:16,360 --> 00:43:18,000
Can you see where this is going
to go?

834
00:43:19,000 --> 00:43:23,280
So she saw it and instinctively
reached in to grab it into the

835
00:43:23,280 --> 00:43:28,000
boiling hot water.
Well, she didn't.

836
00:43:28,520 --> 00:43:32,560
It didn't hurt and she took her,
she said she took her hand out

837
00:43:32,560 --> 00:43:36,400
of the water and she was looking
at it and she realized that it

838
00:43:36,400 --> 00:43:40,160
didn't look OK.
And so she went and she ran cold

839
00:43:40,160 --> 00:43:42,040
water over it.
And then she called her mom.

840
00:43:42,120 --> 00:43:45,520
She had other scars on her hand
that they mentioned that she saw

841
00:43:45,520 --> 00:43:47,760
the faded white scars from other
things.

842
00:43:48,120 --> 00:43:50,960
And so she called her mom and
she said, mom, I just put my

843
00:43:50,960 --> 00:43:53,280
fingers in.
So her mom came over and looked

844
00:43:53,280 --> 00:43:56,240
at it and said sure enough,
there it was that she had done

845
00:43:56,240 --> 00:43:58,400
it again.
Her mom helped her to take care

846
00:43:58,400 --> 00:44:01,960
of it and she was relieved the
the burn wasn't worse, but she

847
00:44:02,240 --> 00:44:06,880
just just did it again.
And she was 13 years old when

848
00:44:06,880 --> 00:44:10,000
she did this.
Her mom, Tara, these parents, I

849
00:44:10,000 --> 00:44:12,280
just can't imagine how stressed
out they are about all of this.

850
00:44:12,280 --> 00:44:15,200
But her mom, Tara showed her how
to get something out with

851
00:44:15,200 --> 00:44:18,440
another utensil and how to not
do that.

852
00:44:18,440 --> 00:44:21,760
And Ashlyn said she realized as
soon as she did it that it

853
00:44:21,760 --> 00:44:25,600
wasn't a good idea, but it
hadn't felt like anything was

854
00:44:25,600 --> 00:44:27,840
wrong.
So most of us would get close to

855
00:44:27,840 --> 00:44:29,160
the wire and go, oh, yeah,
that's hot.

856
00:44:29,640 --> 00:44:32,480
But she didn't feel that.
And she said later she was just

857
00:44:32,480 --> 00:44:36,640
thinking, what did I do?
What did I just do?

858
00:44:36,840 --> 00:44:40,080
Because at 13, she was old
enough to know that there was

859
00:44:40,080 --> 00:44:43,720
going to be a result, even if
she couldn't feel it.

860
00:44:43,880 --> 00:44:46,200
We're talking about that.
And then they were talking about

861
00:44:46,960 --> 00:44:50,160
that this Justin had been
interviewing this family and it

862
00:44:50,160 --> 00:44:53,080
actually sounds like he'd been
staying with them and said a

863
00:44:53,080 --> 00:44:55,520
couple of nights after telling
me the story about putting her

864
00:44:55,520 --> 00:44:59,440
hand in the boiling water,
Ashlyn sat in the kitchen and he

865
00:44:59,440 --> 00:45:02,680
said that she was playing with
her headband that she wore her

866
00:45:02,800 --> 00:45:06,840
long brown hair back with, and
she almost always had headbands.

867
00:45:07,200 --> 00:45:08,840
And they were just chatting at
the table.

868
00:45:08,840 --> 00:45:11,440
They were drawing on napkins and
just talking and things and

869
00:45:11,440 --> 00:45:14,120
listening to songs.
And all of a sudden, Tara,

870
00:45:14,200 --> 00:45:17,320
Ashlyn's mom, gasped and lifted
the hair away from her

871
00:45:17,320 --> 00:45:20,520
daughter's ears.
Ashlyn was bleeding where her

872
00:45:20,520 --> 00:45:23,080
headband had been but hadn't
felt it.

873
00:45:23,320 --> 00:45:26,760
It had been cutting into her
skin the entire time, but they

874
00:45:27,400 --> 00:45:30,240
didn't know and she wears them
all the time.

875
00:45:30,280 --> 00:45:31,840
And it's just like, Oh my
goodness.

876
00:45:31,880 --> 00:45:34,800
As we mentioned, one of the
things that individuals do is,

877
00:45:35,000 --> 00:45:38,480
is sweat minimally.
So this can cause a, an increase

878
00:45:38,480 --> 00:45:40,800
in temperature that they don't
notice and then cause an

879
00:45:40,800 --> 00:45:43,200
emergency stroke and heat stroke
and things like that.

880
00:45:43,520 --> 00:45:48,680
Actually wears one of the medic
alert, she has A tag because she

881
00:45:48,680 --> 00:45:53,040
wanted just to look cute.
So she has this silicone

882
00:45:53,040 --> 00:45:56,400
wristband that has tags on.
They have tagged on them that

883
00:45:56,400 --> 00:46:00,280
says she cannot feel pain and
sweats minimally normally so if

884
00:46:00,280 --> 00:46:03,680
someone finds her they know
these things are important.

885
00:46:03,680 --> 00:46:07,680
But I appreciated the fact that
at 13 she still tried to make it

886
00:46:07,680 --> 00:46:10,680
look as good as she could even
though she had to have this to

887
00:46:10,680 --> 00:46:16,360
potentially save her life.
And it's just, it's such such a

888
00:46:16,720 --> 00:46:19,800
potentially devastating thing
that can be happening there,

889
00:46:19,800 --> 00:46:22,280
especially if the people
involved don't have any idea

890
00:46:22,280 --> 00:46:25,800
what is going on.
And then one of the things her

891
00:46:25,800 --> 00:46:28,240
parents said is that when Ashlyn
was born, and this is something

892
00:46:28,240 --> 00:46:31,000
that I saw that was consistent
and all of the babies that were

893
00:46:31,160 --> 00:46:34,240
talked about is that when she
was born, she didn't cry.

894
00:46:34,240 --> 00:46:36,680
As I mentioned, she barely made
any noises.

895
00:46:37,120 --> 00:46:40,520
And one time she got a diaper
rash that was so bad that Tara

896
00:46:40,520 --> 00:46:44,720
just was said she winced when
she put on the cream because I

897
00:46:44,720 --> 00:46:48,000
think we've all seen babies with
diaper rash and it looks

898
00:46:48,000 --> 00:46:49,640
terrible.
But Tara, I mean, excuse me,

899
00:46:49,640 --> 00:46:52,400
Ashlyn never responded, never
thought it was a problem.

900
00:46:52,400 --> 00:46:55,800
When when Ashlyn was three
months old, they noticed she had

901
00:46:55,880 --> 00:46:59,800
a kind of swollen and red eye.
And so they thought it was pink

902
00:46:59,800 --> 00:47:01,520
eye or something.
Took her to the doctor and it

903
00:47:01,520 --> 00:47:03,840
turned out that she had a
massive corneal abrasion as we

904
00:47:03,840 --> 00:47:06,120
talked about.
And she was just sitting there.

905
00:47:06,120 --> 00:47:09,480
She had no, no problems, no
issues or anything like that.

906
00:47:09,720 --> 00:47:12,800
And as I mentioned, almost all
of these individuals have some

907
00:47:12,800 --> 00:47:15,840
level of, of vision loss and
problems because of these

908
00:47:15,840 --> 00:47:18,320
abrasions.
Long story short, these, this,

909
00:47:18,440 --> 00:47:20,280
this family, they were called
the blockers.

910
00:47:20,880 --> 00:47:23,760
They got rid of all their
furniture with sharp corners and

911
00:47:24,040 --> 00:47:27,000
got soft carpet, tried to
protect her as much as they

912
00:47:27,000 --> 00:47:28,760
could.
They actually live in a very

913
00:47:28,760 --> 00:47:31,040
small town and everybody knows
her.

914
00:47:31,040 --> 00:47:33,680
And so they really help keep
Ashland safe.

915
00:47:34,040 --> 00:47:38,400
This family ended up putting
together a, a camp for people

916
00:47:38,400 --> 00:47:41,000
who have reduced sensitivity.
Now, not all of them are

917
00:47:41,000 --> 00:47:46,040
probably probably have the CIP,
but they providing an

918
00:47:46,040 --> 00:47:48,880
opportunity for these kids to be
somewhere safe so that they can

919
00:47:48,880 --> 00:47:51,560
be taken care of.
One of the things that Ashlands

920
00:47:51,720 --> 00:47:55,720
school people, school staff does
is or did anyway.

921
00:47:55,760 --> 00:47:58,600
I don't think they do it as much
now that she's older in the

922
00:47:58,600 --> 00:48:00,280
story.
Now she's a full adult.

923
00:48:00,280 --> 00:48:02,880
But she when she was in the
store, she was 13.

924
00:48:02,880 --> 00:48:05,600
But what they did was they
helped at school.

925
00:48:05,640 --> 00:48:07,560
And when she came in from
school, they checked to make

926
00:48:07,560 --> 00:48:10,120
sure she didn't have any rocks
in her shoes or any scratches or

927
00:48:10,120 --> 00:48:13,160
breaks or anything like that to
make sure she was OK.

928
00:48:13,640 --> 00:48:15,640
Yeah.
It's really, it's really wild.

929
00:48:16,000 --> 00:48:23,400
So one of the people who helped
study this disorder is a Doctor

930
00:48:23,440 --> 00:48:27,840
Who is from the United Kingdom
and his last name is Woods.

931
00:48:27,840 --> 00:48:32,080
Let me see if I can Jeffrey,
Jeffrey Woods and he and his his

932
00:48:32,200 --> 00:48:36,280
partners found out about this
gene that we were talking about.

933
00:48:36,280 --> 00:48:39,520
He said that they just couldn't
figure out at first what was

934
00:48:39,520 --> 00:48:42,360
going on.
And I can tell you what the gene

935
00:48:42,360 --> 00:48:47,760
is, which I'm sure you're going
to remember SCN 9A gene is the

936
00:48:47,760 --> 00:48:50,000
problem, just in case you were
wondering.

937
00:48:50,640 --> 00:48:54,120
And, and Doctor Woods said this
was it's just an extraordinary

938
00:48:54,120 --> 00:48:56,440
disorder.
It's really interesting to study

939
00:48:56,720 --> 00:49:00,760
and he talks again about the
fact that we don't realize what

940
00:49:00,760 --> 00:49:05,800
kind of a pain, what kind of
pain sensations play in the way

941
00:49:05,800 --> 00:49:09,240
that we live our lives.
And again, boys die at the

942
00:49:09,240 --> 00:49:14,440
younger age of life because of
risky behavior generally and

943
00:49:14,440 --> 00:49:19,280
also even more because of this
pain problem and that they don't

944
00:49:19,280 --> 00:49:21,120
have self modulation because of
it.

945
00:49:21,160 --> 00:49:24,800
It's just, I mean, I remember
how worried I was about my son

946
00:49:25,240 --> 00:49:27,120
doing something stupid and
hurting himself.

947
00:49:27,120 --> 00:49:29,400
And then at least he knew when
he hurt himself.

948
00:49:30,000 --> 00:49:30,480
Yeah.
No.

949
00:49:30,480 --> 00:49:32,280
Kidding.
I mean, in my case it was

950
00:49:32,280 --> 00:49:36,480
Odyssey, but still, yeah.
That's right, Ashlyn's mom Tara

951
00:49:36,800 --> 00:49:39,600
had started a support group
online for people who have this

952
00:49:39,600 --> 00:49:41,760
syndrome.
There's a woman she heard heard

953
00:49:41,760 --> 00:49:48,400
from who is in her 20s when she
saw that Ashlyn syndrome was

954
00:49:48,400 --> 00:49:52,440
something that she might share.
And her name is Karen Kane.

955
00:49:52,560 --> 00:49:57,000
And she had always had noticed
that she didn't seem to feel any

956
00:49:57,000 --> 00:50:01,120
pain while other people did.
And her sister Ruth also

957
00:50:01,120 --> 00:50:03,480
experienced the same thing.
And like I said, they were in

958
00:50:03,480 --> 00:50:06,000
Scotland.
No one knew what was wrong.

959
00:50:06,120 --> 00:50:08,400
And their parents just were
always living in fear that there

960
00:50:08,400 --> 00:50:10,800
was going to be a problem and
hurt themselves and all of that.

961
00:50:10,840 --> 00:50:13,040
These people, though, didn't
want to seek out others.

962
00:50:13,040 --> 00:50:15,520
They wanted to sort of blend in
and hope for the best, I guess.

963
00:50:15,800 --> 00:50:18,920
She said that Karen said that
she just didn't want to be a

964
00:50:18,920 --> 00:50:21,240
freak.
She said that she reached out to

965
00:50:21,240 --> 00:50:25,400
Tara Ashlands mom didn't really
want to meet her or anything

966
00:50:25,600 --> 00:50:28,120
because she is still didn't want
to be attached to this.

967
00:50:28,480 --> 00:50:31,640
But she mentioned that her
sister neither of them can sweat

968
00:50:31,640 --> 00:50:33,680
very much.
They don't even They also don't

969
00:50:33,680 --> 00:50:37,400
have the ability to smell.
When when Karen told Tara this,

970
00:50:37,880 --> 00:50:40,400
they checked with Ashlyn and
they realized she couldn't smell

971
00:50:40,400 --> 00:50:42,240
either.
They realized it because she

972
00:50:42,240 --> 00:50:44,080
started spraying all this
Cologne.

973
00:50:44,080 --> 00:50:45,480
I mean, excuse me, what did
girls wear?

974
00:50:45,480 --> 00:50:49,000
Perfume.
She she sprayed all this perfume

975
00:50:49,000 --> 00:50:52,040
all over her, just to a terrible
extent where it was killing

976
00:50:52,040 --> 00:50:54,400
everybody else.
And Ashlyn couldn't smell it.

977
00:50:54,600 --> 00:50:57,520
But she liked the way that it
felt when the moisture dropped

978
00:50:57,520 --> 00:50:59,120
on her body because she could
feel that.

979
00:50:59,280 --> 00:51:01,280
That's adorable.
It is.

980
00:51:01,280 --> 00:51:05,280
And so sad that that that was
the only thing she found that

981
00:51:05,280 --> 00:51:07,800
she could, she could feel.
And she of course didn't

982
00:51:07,880 --> 00:51:10,560
realized that what she was
spraying hadn't.

983
00:51:10,600 --> 00:51:13,120
I don't know if she didn't
realize it had a scent at all

984
00:51:13,120 --> 00:51:14,480
because she didn't know what
scent was.

985
00:51:14,480 --> 00:51:16,720
But they, they realized that
that was the issue.

986
00:51:16,720 --> 00:51:18,800
She just couldn't smell it.
That is so.

987
00:51:19,560 --> 00:51:21,120
Interesting.
Yeah.

988
00:51:21,400 --> 00:51:26,200
And this Karen said that she
had, she had grown up and she

989
00:51:26,200 --> 00:51:28,400
had done OK.
And, you know, they, she and her

990
00:51:28,400 --> 00:51:31,080
sister both had injuries that
most people didn't.

991
00:51:31,480 --> 00:51:35,320
But she also said that she had
her first child when she was 31.

992
00:51:35,400 --> 00:51:37,880
She had this baby through an
emergency C-section.

993
00:51:37,880 --> 00:51:39,560
And the baby was fine.
Everything was great.

994
00:51:40,040 --> 00:51:42,760
But afterwards, Karen said she
felt a sensation she could only

995
00:51:42,760 --> 00:51:45,400
describe as stiffness down her
right side.

996
00:51:45,920 --> 00:51:47,920
She went home.
She walked around for a while,

997
00:51:47,920 --> 00:51:49,240
and it just wasn't getting
better.

998
00:51:49,240 --> 00:51:52,280
In fact, it was getting worse.
It wasn't painful, but it was

999
00:51:52,280 --> 00:51:55,360
just stiff.
And then ultimately she could

1000
00:51:55,360 --> 00:51:59,160
feel a clicking in her hip and
she could hear it too.

1001
00:51:59,160 --> 00:52:01,520
So she said it started becoming
more difficult to walk.

1002
00:52:01,520 --> 00:52:04,800
So she went back to her doctor
and she said she explained that

1003
00:52:04,800 --> 00:52:07,320
she couldn't feel pain, but that
she had this issue.

1004
00:52:07,320 --> 00:52:09,440
And she asked for an X-ray to
happen.

1005
00:52:09,720 --> 00:52:12,200
And they said, oh, you're
probably just experiences

1006
00:52:12,480 --> 00:52:14,320
experiencing postpartum
depression.

1007
00:52:14,360 --> 00:52:17,560
And so then she insisted, She
said, no, I really need to get

1008
00:52:17,560 --> 00:52:20,600
chat.
That's when she finally got that

1009
00:52:20,600 --> 00:52:22,480
done.
And her her pelvis had been

1010
00:52:22,480 --> 00:52:25,400
shattered.
And she was she was bleeding

1011
00:52:25,400 --> 00:52:27,600
internally.
Oh, my goodness.

1012
00:52:27,600 --> 00:52:30,520
This wasn't that long ago.
And she had to stay in the

1013
00:52:30,520 --> 00:52:32,840
hospital for six months and was
unable to walk.

1014
00:52:32,920 --> 00:52:34,600
Oh, my gosh.
Yeah.

1015
00:52:35,160 --> 00:52:40,240
And ultimately, yeah, ultimately
her pelvis healed, but her left

1016
00:52:40,240 --> 00:52:42,960
leg is now shorter than her
right, and she has to wear an

1017
00:52:42,960 --> 00:52:45,360
elevated shoe to correct it.
And that's, you know, beyond

1018
00:52:45,360 --> 00:52:46,680
that, there's no lasting
effects.

1019
00:52:46,680 --> 00:52:50,080
It said, I'm like, that seems
pretty significant. 2011, she

1020
00:52:50,080 --> 00:52:52,680
had a second child.
This time, though, they X-rayed

1021
00:52:52,680 --> 00:52:55,880
her immediately.
There was no damage.

1022
00:52:55,880 --> 00:52:59,320
And she said there had not been.
So I don't know if whatever the

1023
00:52:59,320 --> 00:53:02,200
emergency they had been in
probably was why she had the

1024
00:53:02,200 --> 00:53:05,400
fracture in the 1st place again.
Karen says she really doesn't

1025
00:53:05,400 --> 00:53:08,080
want to meet them because she
just.

1026
00:53:08,360 --> 00:53:10,600
I'd almost sounded like she felt
like it that would make it feel

1027
00:53:10,600 --> 00:53:14,200
too real, but but she wanted to
she put her name out there, but

1028
00:53:14,200 --> 00:53:16,840
she didn't want to be
interviewed or meet them or

1029
00:53:16,840 --> 00:53:19,760
anything like that.
One of the other stories, and I

1030
00:53:19,760 --> 00:53:22,520
know this is taking a long time,
but I really this is just such

1031
00:53:22,520 --> 00:53:25,400
an interesting topic to me.
Another another child.

1032
00:53:25,600 --> 00:53:29,400
Her name is Gabby Vingress and
she's from Minnesota and has a

1033
00:53:29,400 --> 00:53:32,360
similar story.
She's an adult now and I won't

1034
00:53:32,360 --> 00:53:35,760
go into all the details again,
but she also is she is now

1035
00:53:35,760 --> 00:53:38,280
legally blind because of corneal
abrasions.

1036
00:53:38,600 --> 00:53:42,560
She had bitten her tongue so
badly when she was an infant

1037
00:53:42,960 --> 00:53:46,840
that she was in the hospital for
something like 6 weeks or

1038
00:53:46,840 --> 00:53:51,600
something because her Oh no
sorry I exaggerated 10 days

1039
00:53:51,920 --> 00:53:55,200
because her tongue was so
swelled up that she couldn't

1040
00:53:55,200 --> 00:53:57,240
drink.
So she was getting dehydrated

1041
00:53:57,720 --> 00:54:02,640
and she was When her teeth
started coming in, she mutilated

1042
00:54:02,640 --> 00:54:07,800
the inside of her mouth so much
that it just, it was just she

1043
00:54:07,800 --> 00:54:10,920
had, her lips were gone.
She had permanent damage because

1044
00:54:10,920 --> 00:54:13,960
of it.
And finally, her parents, they

1045
00:54:14,200 --> 00:54:16,240
noted that she would chew her
fingers bloody.

1046
00:54:16,240 --> 00:54:18,400
She would chew on her tongue
like it was bubble gum.

1047
00:54:18,880 --> 00:54:21,320
And she ended up, like I said,
in the hospital because she

1048
00:54:21,320 --> 00:54:23,560
couldn't drink.
The teeth that Gabby didn't

1049
00:54:23,560 --> 00:54:27,560
break off biting toys were
removed for by a dentist to end

1050
00:54:27,560 --> 00:54:30,880
the carnage in her mouth because
there was no other things.

1051
00:54:32,040 --> 00:54:34,120
Yeah, there were no other things
that were working because she

1052
00:54:34,120 --> 00:54:36,680
just couldn't feel it.
And it made me wonder if she

1053
00:54:36,680 --> 00:54:40,160
must have had some sort of
dental difficulty that made her

1054
00:54:40,160 --> 00:54:43,280
teeth hit her tongue and her
cheeks and everything more often

1055
00:54:43,280 --> 00:54:44,960
than most.
I don't know.

1056
00:54:45,360 --> 00:54:49,120
By the this, her father said by
the time her adult teeth came

1057
00:54:49,120 --> 00:54:51,360
in, we thought she'd be old
enough to understand.

1058
00:54:51,760 --> 00:54:55,560
Well, she ended up having a
broken jaw and the adult teeth

1059
00:54:55,560 --> 00:54:59,000
didn't come on proper improperly
and they broke off one at a

1060
00:54:59,000 --> 00:55:00,160
time.
Oh my.

1061
00:55:00,520 --> 00:55:01,360
Gosh.
And again.

1062
00:55:01,360 --> 00:55:03,520
Because she couldn't feel it.
So she was putting so much

1063
00:55:03,520 --> 00:55:07,280
pressure on them I guess.
Or maybe cross crossing, I don't

1064
00:55:07,280 --> 00:55:10,960
know.
But because of because of this,

1065
00:55:11,240 --> 00:55:14,600
she as an adult didn't have
teeth either.

1066
00:55:14,600 --> 00:55:17,600
She is.
She's legally blind because of

1067
00:55:17,600 --> 00:55:19,240
self-inflicted childhood
injuries.

1068
00:55:19,520 --> 00:55:21,760
And now when it's said like
that, it seems to me that it

1069
00:55:21,760 --> 00:55:24,000
sounds like they did it on
purpose and they do not.

1070
00:55:24,000 --> 00:55:25,440
Yeah, it does.
It sounds.

1071
00:55:25,440 --> 00:55:26,840
Like self harm, but that's a
whole.

1072
00:55:27,200 --> 00:55:28,560
Different thing.
Different.

1073
00:55:28,560 --> 00:55:31,560
Thing and this is self-inflicted
but not because they want to.

1074
00:55:31,600 --> 00:55:35,600
This is where that article about
Gabby fighting the insurance

1075
00:55:35,600 --> 00:55:41,280
company because she got older
and wanted in high school, the

1076
00:55:41,280 --> 00:55:43,760
dentist in the area had built
her some plastic teeth.

1077
00:55:43,760 --> 00:55:46,160
So for her high school photos,
she would have teeth in her

1078
00:55:46,160 --> 00:55:47,760
mouth.
But because she didn't have

1079
00:55:47,760 --> 00:55:50,600
teeth for so long, she had a lot
of jaw issues.

1080
00:55:50,600 --> 00:55:53,160
And like it said, they had
fractured her jaw had fractured.

1081
00:55:53,480 --> 00:55:56,640
And I saw her on a video and
when she was talking, I could

1082
00:55:56,640 --> 00:56:00,640
see that her her jaw was off,
that it was just not moving in

1083
00:56:00,640 --> 00:56:04,920
the typical way.
And so she had as I, I can't

1084
00:56:04,920 --> 00:56:08,880
remember how old she ended up
being when she wanted this taken

1085
00:56:08,880 --> 00:56:11,920
care of, but she said she felt
like she looked, she looked like

1086
00:56:11,960 --> 00:56:14,040
a 90 year old.
And she said she was mostly

1087
00:56:14,040 --> 00:56:17,320
chewing with her gums because
she can only chew really soft

1088
00:56:17,320 --> 00:56:20,680
things.
And she wanted to get this taken

1089
00:56:20,680 --> 00:56:22,600
care of.
And her insurance company said,

1090
00:56:22,600 --> 00:56:24,320
no, no, we're not going to do
it.

1091
00:56:24,320 --> 00:56:28,360
It's not a medical emergency.
Or not medically necessary,

1092
00:56:28,360 --> 00:56:30,400
right?
They just want it.

1093
00:56:30,400 --> 00:56:33,080
She just wanted to be more
normal, she said.

1094
00:56:33,080 --> 00:56:36,600
She wants to look like everyone
else and she her mother said

1095
00:56:36,600 --> 00:56:38,560
that her one big wish was to
bite an apple.

1096
00:56:38,600 --> 00:56:40,720
Literally in her life she had
never bitten an apple.

1097
00:56:42,120 --> 00:56:45,440
That's so tragic and.
So what they ended up doing is

1098
00:56:45,560 --> 00:56:49,240
there was a fundraiser and lot
of money was raised for her and

1099
00:56:49,240 --> 00:56:53,120
then a local dentist offered to
provide all of the work for her.

1100
00:56:53,640 --> 00:56:54,320
Oh.
That's lovely.

1101
00:56:54,920 --> 00:56:58,560
Yes.
And then it kind of ironically,

1102
00:56:58,560 --> 00:57:01,680
if you will, but her insurance
company said, oh, well, we'll

1103
00:57:01,680 --> 00:57:04,880
pay for the anesthesia.
And her doctor said thank you.

1104
00:57:04,880 --> 00:57:07,480
That was $1000.
And the rest of her work was

1105
00:57:07,480 --> 00:57:10,200
going to cost a lot of money
because it wasn't an easy thing

1106
00:57:10,200 --> 00:57:11,840
to do.
Her job had to be rebuilt and

1107
00:57:11,840 --> 00:57:14,560
all of these sorts of things.
But it was donated to her, which

1108
00:57:14,560 --> 00:57:18,040
was was, as you say, it was
lovely because it's just, it's

1109
00:57:18,040 --> 00:57:21,320
not her fault that she had the
problem and and she just was

1110
00:57:21,480 --> 00:57:23,160
progressively uncomfortable.
She said.

1111
00:57:23,440 --> 00:57:26,320
I look like a 90 year old woman
because I don't know if you've

1112
00:57:26,320 --> 00:57:28,520
ever seen anyone without teeth,
but their whole face sort of

1113
00:57:28,520 --> 00:57:29,920
looks like it lasts.
In.

1114
00:57:29,920 --> 00:57:31,320
Yeah, exactly.
And that's.

1115
00:57:31,320 --> 00:57:33,640
How she was her whole life.
I was going to mention as

1116
00:57:33,640 --> 00:57:36,800
there's a boy, I didn't write
down the name, but who lived in

1117
00:57:36,800 --> 00:57:38,720
Pakistan.
And one of the doctors who are

1118
00:57:38,720 --> 00:57:42,840
studying this disorder had made
a plan with the family to go and

1119
00:57:42,840 --> 00:57:46,960
interview him and his family to
see how things were going and

1120
00:57:46,960 --> 00:57:48,880
what his experience with the
disorder was.

1121
00:57:48,880 --> 00:57:51,960
He had had his 16th birthday and
decided to show off for some of

1122
00:57:51,960 --> 00:57:55,000
his friends and he dumped off
the building and when he landed

1123
00:57:55,280 --> 00:57:58,720
he he didn't.
I don't remember if he broke

1124
00:57:58,720 --> 00:58:02,280
anything in his legs, but the
compression and the way he hit

1125
00:58:02,600 --> 00:58:05,840
caused internal injury and he
bled to death and he died right

1126
00:58:05,840 --> 00:58:07,320
before the doctor came to talk
to him.

1127
00:58:07,480 --> 00:58:09,840
Oh.
My God, but nobody.

1128
00:58:09,840 --> 00:58:12,960
Knew because he didn't hurt, he
had no obvious external

1129
00:58:12,960 --> 00:58:15,720
symptoms, and then he died.
And I don't even know if his

1130
00:58:15,720 --> 00:58:18,200
parents knew he had jumped off
this building until later.

1131
00:58:18,480 --> 00:58:21,200
I imagine they didn't, because
if they did, I imagine they also

1132
00:58:21,200 --> 00:58:22,560
would have checked into some
things.

1133
00:58:23,000 --> 00:58:26,680
My guess is that it was a
typical 16 year old goofballness

1134
00:58:27,120 --> 00:58:30,320
that they just didn't say
anything and then he died.

1135
00:58:31,320 --> 00:58:34,120
Just terrible, yeah.
Yeah, exactly.

1136
00:58:34,440 --> 00:58:37,480
So one thing to know that I
thought was really interesting

1137
00:58:37,480 --> 00:58:40,920
is that these girls, because
they're in the United States,

1138
00:58:40,920 --> 00:58:44,560
these two girls are being tested
and evaluated.

1139
00:58:44,800 --> 00:58:48,080
And I don't know if Steve is too
old or he didn't want to be

1140
00:58:48,080 --> 00:58:52,440
involved or whatever.
But they are looking to see with

1141
00:58:52,440 --> 00:58:55,440
genetic testing and other sorts
of testing that they're doing to

1142
00:58:55,440 --> 00:58:58,720
see if there's air quote Master
switch to turn off the pain

1143
00:58:58,720 --> 00:59:02,480
sensations because this could be
huge for people who experience

1144
00:59:02,480 --> 00:59:05,760
chronic pain or severe pain.
Like they were saying, it could

1145
00:59:05,760 --> 00:59:09,160
apply to when someone's in the
emergency room after they do

1146
00:59:09,160 --> 00:59:11,320
diagnostic testing.
You know, sometimes you have to

1147
00:59:11,320 --> 00:59:13,200
know where the pain is to be
able to know what the problem

1148
00:59:13,200 --> 00:59:14,920
is.
But once all of that is settled

1149
00:59:14,920 --> 00:59:17,120
in, then would it help in an
emergency room?

1150
00:59:17,120 --> 00:59:18,880
Would it help people with
chronic pain?

1151
00:59:18,960 --> 00:59:22,320
And how could this affect others
in a way that could change their

1152
00:59:22,320 --> 00:59:25,400
lives?
So Ashlyn especially said that

1153
00:59:25,400 --> 00:59:28,480
something about it and she was
she and her parents are glad

1154
00:59:28,480 --> 00:59:30,360
that maybe there's something
good that could come amount of

1155
00:59:30,360 --> 00:59:34,000
this and she's hoping that the
testing that they're doing on

1156
00:59:34,000 --> 00:59:37,960
these two could lead to some
solutions for other problems.

1157
00:59:38,160 --> 00:59:40,840
Yeah, I agree.
Maybe there is a master at least

1158
00:59:40,840 --> 00:59:42,640
know so little about the brain,
you know.

1159
00:59:42,800 --> 00:59:46,840
And so I mean, it seems it to me
it bears to reason that there is

1160
00:59:46,840 --> 00:59:50,280
because brain is quote UN quote
working the right way, right?

1161
00:59:50,280 --> 00:59:54,960
So it's just fascinating.
It is well and the fact that on

1162
00:59:54,960 --> 00:59:57,440
these individuals that they
usually can feel some sort of

1163
00:59:57,440 --> 01:00:01,600
pressure and even Ashland had
mentioned, and I believe Gabby

1164
01:00:01,600 --> 01:00:05,680
had too, that when they're in
really cold situations, like

1165
01:00:05,680 --> 01:00:08,120
Gabby had been out on the video,
she was out with her cousin or

1166
01:00:08,120 --> 01:00:11,320
somebody out in the snow.
And her cousin was saying this

1167
01:00:11,320 --> 01:00:13,280
is seriously cold and Gabby's
like, I'm fine.

1168
01:00:13,600 --> 01:00:16,800
And the interviewer had picked
up some snow and was holding it

1169
01:00:16,800 --> 01:00:18,880
in just for a few seconds and
she couldn't tolerate it.

1170
01:00:19,200 --> 01:00:21,840
And Gabby took it and she said
it feels cold.

1171
01:00:21,840 --> 01:00:24,560
But I mean, not really.
They still have parts that do

1172
01:00:24,560 --> 01:00:26,240
work.
Steve, who have felt that

1173
01:00:26,240 --> 01:00:28,560
pressure and the numbness parts
do work.

1174
01:00:28,560 --> 01:00:31,080
So what is it that's being
circumvented?

1175
01:00:31,360 --> 01:00:34,600
And if they can figure that out,
then that's probably going to be

1176
01:00:34,600 --> 01:00:37,040
able to work reverse like they
were talking about with that

1177
01:00:37,040 --> 01:00:39,240
master switch.
So it may be the same way for

1178
01:00:39,880 --> 01:00:44,880
many of these issues that we
have that are perceptual, that

1179
01:00:45,040 --> 01:00:47,880
maybe they're just part of the
switch needs to be restarted.

1180
01:00:47,960 --> 01:00:50,800
I don't know.
But but this has been a really,

1181
01:00:51,000 --> 01:00:54,640
really fun episode to do for me
because I found it so

1182
01:00:54,640 --> 01:00:57,640
fascinating and so much I I
learned about what they're

1183
01:00:57,640 --> 01:01:01,280
experiencing, even though we
still don't know the answers.

1184
01:01:01,440 --> 01:01:02,640
Very cool.
Thanks for sharing.

1185
01:01:03,240 --> 01:01:04,800
Sure.
Thank you and for sharing your

1186
01:01:04,800 --> 01:01:05,480
part.
Do you have?

1187
01:01:05,480 --> 01:01:07,560
An idea for an episode of this
podcast.

1188
01:01:08,120 --> 01:01:10,880
Just want to say hi.
You can get in touch with us at

1189
01:01:11,120 --> 01:01:19,400
our M4 pod.
That's OURM the #4pod@gmail.com.

1190
01:01:20,000 --> 01:01:23,920
We read every e-mail and
sometimes we even respond just

1191
01:01:23,920 --> 01:01:27,840
like real professionals because.
We are old friends.

1192
01:01:28,000 --> 01:01:31,600
With new twists and lots of body
bags.