Latest / The Shed with Corey Oates, Sam Thaiday and Kip / The MND Doctor

Transcript

The MND Doctor · The Shed with Corey Oates, Sam Thaiday and Kip

• 0:05
  Speaker 1: Approache production.
• 0:21
  Speaker 2: All right, bonus episode all thanks to Queensland Beer Co.
• 0:25
  Speaker 2: We love Queensland Beer Co supplying all of our coasters.
• 0:29
  Speaker 2: We haven't had one yet. You driver last week, didn't you?
• 0:32
  Speaker 2: It was good a lot last week? Yeah, okay, I
• 0:34
  Speaker 2: took a six back six very good. And we have
• 0:37
  Speaker 2: a very special guest with us, John Lee from UQ.
• 0:41
  Speaker 2: Good John, welcome to.
• 0:42
  Speaker 1: The podcast man, thanks for having me us.
• 0:44
  Speaker 2: So you're here to talk about M and D and
• 0:50
  Speaker 2: this is something you're an expert in.
• 0:51
  Speaker 1: Yeah.
• 0:52
  Speaker 3: So I've kind of worked in M and D since
• 0:54
  Speaker 3: two thousand and eight when I did my honors back
• 0:56
  Speaker 3: at UQ. Now, yeah, I lead a group now at
• 0:59
  Speaker 3: Queensland Brain Institute QBI looking at in your disease?
• 1:02
  Speaker 1: So can you.
• 1:03
  Speaker 4: Break it down for us the most simplistic way ever?
• 1:07
  Speaker 4: Corey and I rugby league players. We were happy to
• 1:10
  Speaker 4: get through school, won't we, Corey? Oh yeah?
• 1:11
  Speaker 3: Yeah?
• 1:11
  Speaker 1: Yeah?
• 1:12
  Speaker 4: So can you break down what MMD is and how
• 1:16
  Speaker 4: it affects our bodies, our brains, those types of things.
• 1:18
  Speaker 3: Yeah, so that's it's not easy, like it's quite complex disease.
• 1:22
  Speaker 1: Yeah. So moder in your own disease itself is the disease.
• 1:25
  Speaker 3: It's an aging disease in a way, so it's quite
• 1:27
  Speaker 3: surprising that gian groat in a way. But it affects
• 1:30
  Speaker 3: the brain cells in your brain and in your spinacle
• 1:34
  Speaker 3: that actually controls your muscles. So that could be your limbs,
• 1:37
  Speaker 3: so your arms, your legs, or your speech like what
• 1:40
  Speaker 3: we see in GIE. So those cells in our brain
• 1:43
  Speaker 3: and spinacle is the one that's actually dying and losing
• 1:46
  Speaker 3: that connection to the muscles, and this is why you
• 1:49
  Speaker 3: see kind of the paralysis that you see.
• 1:51
  Speaker 4: So if the brain is the battery and the spine
• 1:53
  Speaker 4: is the wires that go to the body, that the
• 1:56
  Speaker 4: signals aren't being sent anymore because yeah.
• 1:59
  Speaker 3: So the wires are kind of being detached from the
• 2:02
  Speaker 3: muscles because it's actually dying.
• 2:04
  Speaker 5: Yeah, obviously there's been research for a long time, but
• 2:07
  Speaker 5: is there what causes that?
• 2:09
  Speaker 1: Like how does it get to that?
• 2:11
  Speaker 3: So we've been doing a lot of research on M
• 2:14
  Speaker 3: and D, but there's still a lot of answers to
• 2:16
  Speaker 3: be defined. But I guess the thing is with M
• 2:18
  Speaker 3: and D ten percent is from genes, so family, whereas
• 2:22
  Speaker 3: ninety percent is from environmental kind of risk and things
• 2:25
  Speaker 3: like that.
• 2:25
  Speaker 2: And we know what the environment is, Like what what environment?
• 2:29
  Speaker 3: Like?
• 2:29
  Speaker 2: It seems like it's something that's more common in footballers
• 2:32
  Speaker 2: for some reason.
• 2:33
  Speaker 4: Is that true?
• 2:34
  Speaker 1: No, not really, Yeah, not really so not really.
• 2:38
  Speaker 3: So there is no direct research to kind of link
• 2:41
  Speaker 3: any footballers or you know, like the traumatic kind of
• 2:44
  Speaker 3: concussion that you guys get when you're playing things like that,
• 2:47
  Speaker 3: and then linking it to M and D. So people
• 2:49
  Speaker 3: can say or I had many people say that, but
• 2:52
  Speaker 3: there is no kind of direct research to indicate that
• 2:54
  Speaker 3: it actually does play a role in kind of developing
• 2:57
  Speaker 3: mode in your own disease.
• 2:58
  Speaker 2: So do we know what the environment is then.
• 3:00
  Speaker 3: So there's a lot of research, but there's still no
• 3:02
  Speaker 3: direct kind of answers. But there is there's a lot
• 3:04
  Speaker 3: of papers, Like in the nineties there was papers on
• 3:06
  Speaker 3: Italian footballers, paper on Italian footballers developing modern neurone disease.
• 3:11
  Speaker 3: But after that there was nothing else. You know that
• 3:13
  Speaker 3: there was no kind of links to kind of playing
• 3:15
  Speaker 3: these sports. That's kind of leading to modern.
• 3:18
  Speaker 1: We're not going to walk around and live in a bubble.
• 3:21
  Speaker 4: You've got to go and live your life.
• 3:22
  Speaker 5: Yeah, you know, you know, there's no cure, there's no
• 3:26
  Speaker 5: finding ways of how it actually does come up like
• 3:29
  Speaker 5: you know, how it does affect certain people and how
• 3:32
  Speaker 5: what does it pick certain people? And how has it
• 3:34
  Speaker 5: come about? But is there anything at the moment where
• 3:38
  Speaker 5: usually getting close to like you know, slowing the effects
• 3:41
  Speaker 5: down or you know, trying to prolong people's lives and
• 3:45
  Speaker 5: and and are we are we anywhere? And is there
• 3:49
  Speaker 5: anything like that at the moment?
• 3:53
  Speaker 3: Well, there's only one kind of approved drug in Australia,
• 3:55
  Speaker 3: so it's called realazolt so kind of it's kind of
• 3:58
  Speaker 3: modest effect anyway, so it kind of extends people's life
• 4:00
  Speaker 3: by three to six months.
• 4:02
  Speaker 1: That's it.
• 4:03
  Speaker 3: There's a lot of groups, not just in this around
• 4:05
  Speaker 3: the world that's kind of working on these kind of
• 4:07
  Speaker 3: research on M and D research to find you know,
• 4:10
  Speaker 3: drugs or therapies that we can actually use to kind
• 4:12
  Speaker 3: of maybe extend you know, lifespan and these patients. But yeah,
• 4:17
  Speaker 3: there's only one at the moment.
• 4:18
  Speaker 4: So how is how is Australia Are we are we
• 4:21
  Speaker 4: at the top when it comes to leading some of
• 4:23
  Speaker 4: these trials and trying out these new drugs.
• 4:26
  Speaker 1: It's one of the big sites as well.
• 4:27
  Speaker 3: So we've got one in America, We've got like in
• 4:30
  Speaker 3: Europe in Australia. There's a lot of M and D
• 4:32
  Speaker 3: researchers here at Europe in Australia as well, so in Queensland,
• 4:35
  Speaker 3: New South Wales, Victoria.
• 4:36
  Speaker 2: You know, following Juy on Instagram. He's in Spain at
• 4:39
  Speaker 2: the moment, looks like he's getting treatment there. What do
• 4:42
  Speaker 2: you know about that place?
• 4:43
  Speaker 3: So, I don't know if this is a direct treatment
• 4:45
  Speaker 3: for modern neurone disease. I think it's just kind of
• 4:47
  Speaker 3: wellness center to kind of get him prepped up for
• 4:49
  Speaker 3: this kind of the fight that he's talking about with
• 4:51
  Speaker 3: modern neurone disease. So I don't think it's directly related
• 4:54
  Speaker 3: to him and D treatment, but it's more like a
• 4:55
  Speaker 3: kind wellness kind of center.
• 4:57
  Speaker 2: I think I mentioned so so you mentioned it was
• 4:59
  Speaker 2: an aging disease, So is it? But obviously Joys, you
• 5:02
  Speaker 2: know he's not even thirty, Yeah, so how how is
• 5:07
  Speaker 2: he aging? Why is that like is it like getting
• 5:10
  Speaker 2: old in an instant?
• 5:11
  Speaker 3: I don't think it's the aging that's caused what Sky
• 5:13
  Speaker 3: is having, but it could be some other environmentalque that
• 5:16
  Speaker 3: we don't actually know about that's kind of leading to
• 5:17
  Speaker 3: these kind of disease as well, so any kind of
• 5:20
  Speaker 3: brain associated disease with kind of people call it kind
• 5:22
  Speaker 3: of an aging disease, like dementia and Parkinson's and things
• 5:25
  Speaker 3: like that. So MD was in that kind of the group,
• 5:28
  Speaker 3: but we are kind of finding out that there are
• 5:29
  Speaker 3: a lot of early kind of young men also kind
• 5:32
  Speaker 3: of developing these.
• 5:34
  Speaker 5: This could be a stupid question. I don't, I haven't.
• 5:37
  Speaker 5: I just thought about it. But why is it so
• 5:40
  Speaker 5: hard to research? Like why is this such a such
• 5:45
  Speaker 5: a hard one to find not only a cure but
• 5:47
  Speaker 5: something to help.
• 5:49
  Speaker 3: Well, I guess any disease is kind of hard to research,
• 5:53
  Speaker 3: but in particular, M and D is so hard because
• 5:56
  Speaker 3: even within M and D itself, it's so different. So
• 5:59
  Speaker 3: even if you see M and D patients in the clinics,
• 6:01
  Speaker 3: they present different phenotype, different symptoms, So there are it's
• 6:06
  Speaker 3: kind of a complex disease.
• 6:07
  Speaker 1: Like what we like to call it is that.
• 6:09
  Speaker 3: Even within the modern neurone disease itself, there's so many
• 6:12
  Speaker 3: variety of variability or differences in these patients. You know,
• 6:16
  Speaker 3: like not one patient is the same as the other patient,
• 6:18
  Speaker 3: So it's so different. So this is why it's so
• 6:20
  Speaker 3: hard to kind of nail down the actual process or
• 6:24
  Speaker 3: the mechanisms that's leading to these modern neuron disease and
• 6:26
  Speaker 3: actually finding a treatment for these patients.
• 6:28
  Speaker 4: Sous, we're all outsiders looking in at the moment on
• 6:33
  Speaker 4: especially Ji Arrow's journey. Looking at his and watching his
• 6:37
  Speaker 4: interview on Channel nine with Danik and Mason was a
• 6:41
  Speaker 4: real eye opener on how quick this has all occurred.
• 6:44
  Speaker 4: So as an outsider looking in, you probably have a
• 6:47
  Speaker 4: lot more expertise than we do. The first thing, I
• 6:52
  Speaker 4: went and I went and looked at some previous interviews
• 6:55
  Speaker 4: that he was doing, even just like this time, like
• 6:58
  Speaker 4: twelve months ago. The slurring of the speech wasn't there
• 7:02
  Speaker 4: all those things? Is this something that has happened really
• 7:04
  Speaker 4: quickly or is this something that he's been living with
• 7:08
  Speaker 4: for a while, Because I look at his season last
• 7:11
  Speaker 4: year for the Bunnies. He was the best player, he
• 7:13
  Speaker 4: was voted their best players, voted their players player, he
• 7:15
  Speaker 4: wanted a charity award, probably one of the more outstanding
• 7:19
  Speaker 4: seasons that he's had. Yep, and he's in our career.
• 7:22
  Speaker 4: Could he have been playing last year with this disease?
• 7:26
  Speaker 1: Well, it's hard to say.
• 7:27
  Speaker 3: Like in a way, so in a way when you
• 7:29
  Speaker 3: get symptoms and murdering neurone diseases when you do have
• 7:32
  Speaker 3: significant amount of brain cells actually dying. So it's in
• 7:37
  Speaker 3: a way our system is so kind of dynamic, is
• 7:39
  Speaker 3: that you have to have a certain amount of these
• 7:42
  Speaker 3: cells dying to see the symptoms. So for Jie, I
• 7:46
  Speaker 3: can't really confirm that that will be the case, but
• 7:49
  Speaker 3: he could have had these neurons dying while he was
• 7:51
  Speaker 3: playing last year, and it's at a point now where
• 7:54
  Speaker 3: these can't coverage. You know, like these cells can actually
• 7:57
  Speaker 3: compensate the loss by taking up more loads, but because
• 8:01
  Speaker 3: when it gets to that limit where they can't take
• 8:04
  Speaker 3: any more load, that's when you start seeing this symptoms
• 8:06
  Speaker 3: that you see in these patients.
• 8:08
  Speaker 2: And those cells that die, can they ever come back?
• 8:13
  Speaker 3: Well, there's not at the moment. Research doesn't indicate that
• 8:16
  Speaker 3: it can come back. But because if it's that it's connections,
• 8:20
  Speaker 3: Yeah you're gone. But there are research at the moment
• 8:24
  Speaker 3: that's trying to see that if there are some neurons
• 8:26
  Speaker 3: that can be you know, brought back.
• 8:28
  Speaker 2: Yeah, So I mean it's pretty incredible then what the
• 8:31
  Speaker 2: body can do that you can have these cells that
• 8:33
  Speaker 2: are that are dying and then those that are still
• 8:37
  Speaker 2: functioning are able to basically cover for the bad ones
• 8:39
  Speaker 2: and make it seem like everything's okay.
• 8:41
  Speaker 1: Yeah, yeah, yeah.
• 8:42
  Speaker 3: So I guess when these cells that's kind of making
• 8:44
  Speaker 3: that connections to that muscles, if that detaches or kind
• 8:47
  Speaker 3: of loses that connections, the other cells can actually make
• 8:50
  Speaker 3: that connections to cover up that loss. So yeah, so
• 8:54
  Speaker 3: in a way, you don't see the symptoms until we
• 8:56
  Speaker 3: kind of reach that maximum of I can't do any
• 9:00
  Speaker 3: more covering in that sense. So I think with Jie,
• 9:04
  Speaker 3: like I can't guarantee, can't confirm that that is the case,
• 9:07
  Speaker 3: but it could be that he had all of that
• 9:09
  Speaker 3: happening last year when he had the amazing season, but
• 9:12
  Speaker 3: then now like it's that It's the sad part for
• 9:15
  Speaker 3: me was seeing how fast it was. And Joe as well,
• 9:17
  Speaker 3: you know, like you were saying, like twelve months ago
• 9:19
  Speaker 3: when he was doing an interview, he was fine, he
• 9:21
  Speaker 3: didn't have any slurry speech. But now with Daniko, like
• 9:24
  Speaker 3: you can clearly tell he's struggling, you know, Like that's
• 9:26
  Speaker 3: the thing.
• 9:26
  Speaker 2: So is that common? Is it normally that fast or
• 9:30
  Speaker 2: is it like.
• 9:30
  Speaker 1: It's like I said, all MND patients are so different. Crazy.
• 9:34
  Speaker 3: So there are people that goes for very long time,
• 9:36
  Speaker 3: so they go like ten fifteen years. There are people
• 9:39
  Speaker 3: that don't even make a year sometimes in some of
• 9:40
  Speaker 3: the you know people that I know in clinics and
• 9:42
  Speaker 3: things like that. It's like Stephen Hawkins, right, so he
• 9:45
  Speaker 3: had some kind of modern neuron disease, but he lived
• 9:47
  Speaker 3: for so long.
• 9:48
  Speaker 5: Yeah, So okay, I know there was a little bit
• 9:52
  Speaker 5: of chat about this, but we touched on it at
• 9:55
  Speaker 5: the start. But can you We'll not can you but
• 9:59
  Speaker 5: back you know, back to back constant head knocks.
• 10:03
  Speaker 1: In our game.
• 10:04
  Speaker 5: Does that play that doesn't have an effect on this?
• 10:07
  Speaker 5: It is that a contributor in any way? Or were
• 10:09
  Speaker 5: you just there's not enough research.
• 10:11
  Speaker 3: Well I can't say no, because there is. We haven't
• 10:14
  Speaker 3: actually done the research to kind of validate that. But
• 10:16
  Speaker 3: there is also no direct research to confirm that these
• 10:19
  Speaker 3: competitive head knocks leads to modern neurone disease. But in
• 10:23
  Speaker 3: a way, if you do get the headnocks, you are
• 10:25
  Speaker 3: exposing your brains to a lot of these kind of impacts, right,
• 10:28
  Speaker 3: But that can lead to not just modern neurons, but
• 10:30
  Speaker 3: that can that can lead to any other neurodegeneral diseases
• 10:33
  Speaker 3: like Parkinson's, you know, like you see Moi like you
• 10:36
  Speaker 3: that you know, boxing that had that led to him
• 10:39
  Speaker 3: getting you know, Parkinson's and things like that. So we
• 10:41
  Speaker 3: can't one hundred percent say playing footy getting concuss is
• 10:45
  Speaker 3: going to lead to modern neuron disease, but that can
• 10:47
  Speaker 3: increase the risk. It could be kind of that maybe
• 10:50
  Speaker 3: the susceptibility for that environmental queue that I was telling you.
• 10:53
  Speaker 2: Guys, is that where they got the that research of
• 10:57
  Speaker 2: the Italian football team you mentioned Obviously there's a lot
• 11:00
  Speaker 2: of heading in soccer. Is that what that research showed
• 11:03
  Speaker 2: is that these players that are using their head with
• 11:06
  Speaker 2: the ball.
• 11:07
  Speaker 1: No, it wasn't even that, it wasn't even on the head.
• 11:08
  Speaker 3: There was just playing football. Yeah, it was just playing soccer.
• 11:12
  Speaker 3: So Italian football team, but this was like back in
• 11:14
  Speaker 3: the nineties, I think, yeah, and there was nothing kind
• 11:17
  Speaker 3: of came after that as well.
• 11:18
  Speaker 1: So, like I said, like it's a myth that.
• 11:20
  Speaker 3: People talk about, right like if you get these kind
• 11:22
  Speaker 3: of competitive concussions, that's going to lead to having or
• 11:26
  Speaker 3: developing these kind of neuro kind of logical symptoms. But
• 11:29
  Speaker 3: it's kind of there is no direct research to confirm
• 11:32
  Speaker 3: or validate that as well, you know, because.
• 11:33
  Speaker 2: We want to understand it, right, Yeah, everyone's trying to
• 11:36
  Speaker 2: find a link. Does that make you, guys feel better
• 11:39
  Speaker 2: knowing that at this stage there's not a link to it,
• 11:43
  Speaker 2: because you don't want to know that there's something just
• 11:45
  Speaker 2: taken away.
• 11:46
  Speaker 4: Yeah, that's that's true. I look back at my career though,
• 11:50
  Speaker 4: and I have no regrets in playing rugby league. It
• 11:53
  Speaker 4: has given me so much in my life, and obviously
• 12:00
  Speaker 4: there are worries for those things, CTE being another one,
• 12:06
  Speaker 4: but you know, I will just continue to live my
• 12:10
  Speaker 4: life as healthy as possible, and again, just like my
• 12:15
  Speaker 4: rugby league days, just take it head on when it
• 12:18
  Speaker 4: and when or if it comes fingers cross hopefully doesn't
• 12:21
  Speaker 4: touch wood. But yeah, it's definitely gives a little bit
• 12:27
  Speaker 4: of a sense of ease that there is no direct
• 12:30
  Speaker 4: link at the moment. And again the research is not
• 12:34
  Speaker 4: being done, but I'm sure that it will be over
• 12:38
  Speaker 4: the next probably a few years.
• 12:40
  Speaker 3: Yeah, if, if, if there is a link between having
• 12:43
  Speaker 3: these kind of head knocks to M and D, don't
• 12:46
  Speaker 3: you think you'll see more.
• 12:47
  Speaker 1: Players, I mean the other than just Jay Era at
• 12:50
  Speaker 1: the moment, rightah.
• 12:51
  Speaker 3: Yeah, and even especially when you're playing back in the
• 12:53
  Speaker 3: eighties and ninety where there is more head knocks that
• 12:55
  Speaker 3: we're not really sure of now, right yeah.
• 12:57
  Speaker 5: Yeah, yeah, And even then there wasn't the recovery and
• 13:01
  Speaker 5: there wasn't the care.
• 13:02
  Speaker 2: Yeah at that time, yeah, play on can cast.
• 13:06
  Speaker 5: Yeah, but even our career is like, you know, it
• 13:09
  Speaker 5: didn't changed towards back into mind, but yeah, I'm the
• 13:13
  Speaker 5: same same.
• 13:13
  Speaker 1: I don't regret anything.
• 13:15
  Speaker 5: And I had some really scary moments with those concussions
• 13:19
  Speaker 5: back to back and certain muscles not working in my
• 13:22
  Speaker 5: neck and stuff like that. One of my eyes was like,
• 13:24
  Speaker 5: you know, that's scared the hell out of me, But yeah,
• 13:27
  Speaker 5: I look back now and the same. I'd never change anything.
• 13:30
  Speaker 5: It's given me so much more than what I've asked
• 13:32
  Speaker 5: for I ever thought i'd ever get. So yeah, just
• 13:36
  Speaker 5: you know, you know, it's hard to not think about it.
• 13:40
  Speaker 5: Just moving forward every day, and you know, I feel
• 13:44
  Speaker 5: like with these sort of chats, you know, and trying
• 13:48
  Speaker 5: to help and get it out there that you know,
• 13:53
  Speaker 5: we want to find research and we want to help
• 13:54
  Speaker 5: as much as we possibly can the future generations, you know,
• 13:59
  Speaker 5: and right now, I feel like we're just we're all
• 14:02
  Speaker 5: here wanting to support one of the best blas in
• 14:05
  Speaker 5: the games.
• 14:05
  Speaker 4: Yeah, yeah, yeah, and the and the snowball effect off
• 14:08
  Speaker 4: the back of that is everyone benefits. And I think sometimes,
• 14:12
  Speaker 4: like in the Wield, in the weird bloody universal ways,
• 14:16
  Speaker 4: sometimes these things happen to people with profiles, so things
• 14:19
  Speaker 4: can be brought up and discussed and talked about. So yeah,
• 14:22
  Speaker 4: hopefully by highlighting it more, John and his team can
• 14:25
  Speaker 4: do more research into it, and those baby steps can
• 14:28
  Speaker 4: be made every every time and every day. Yeah. Yeah.
• 14:32
  Speaker 4: Is there anything out there at the moment that excites
• 14:34
  Speaker 4: you about the studies and stuff that you're doing. Is
• 14:37
  Speaker 4: there is there something you're tinkering on? It's almost like
• 14:39
  Speaker 4: give us an insight.
• 14:41
  Speaker 1: Yeah, that's coming up any good years.
• 14:44
  Speaker 3: Well, there's a lot of the thing is that the
• 14:46
  Speaker 3: M and D kind of the field itself has been
• 14:48
  Speaker 3: very hot at the moment, where a lot of the
• 14:49
  Speaker 3: research is happening in that space internationally and locally and
• 14:52
  Speaker 3: here in Australia's line. There's a lot of clinical trials
• 14:55
  Speaker 3: that's kind of going in. So hopefully some of these
• 14:57
  Speaker 3: clinical trials can stick and show some you know, we
• 15:00
  Speaker 3: will beneficial face and then keep going to like different
• 15:03
  Speaker 3: phases and then you know one like maybe in the
• 15:05
  Speaker 3: next ten to fifteen years, we have a drug that
• 15:08
  Speaker 3: can actually have better effect on MTY patients.
• 15:11
  Speaker 2: Yeah, John, you mentioned young men in there? Was that
• 15:14
  Speaker 2: because it does it affect men more more so than women?
• 15:18
  Speaker 1: Is it?
• 15:18
  Speaker 4: Is it?
• 15:20
  Speaker 1: So?
• 15:20
  Speaker 3: Yeah, at the moment, I think with kind of the
• 15:22
  Speaker 3: analysis that people have done, the men are a bit
• 15:25
  Speaker 3: more prone to getting HIM and D over females, So
• 15:28
  Speaker 3: males do get a bit more And.
• 15:30
  Speaker 2: What about ages, Like, is Jai on the is really young?
• 15:33
  Speaker 1: I think thirty is really young.
• 15:34
  Speaker 3: I think he is one of the youngest patients that
• 15:37
  Speaker 3: I've kind of seen in my career. Most patients that
• 15:41
  Speaker 3: we do see in the clinics around that, you know,
• 15:43
  Speaker 3: the late fifties, sixties, seventies. I think the youngest that
• 15:47
  Speaker 3: I've seen before Jai was in his early late thirties.
• 15:50
  Speaker 4: Yeah, maybe Carl.
• 15:53
  Speaker 1: Carl was forty two.
• 15:56
  Speaker 3: Yeah, he was still on that young kind of spectrum
• 15:59
  Speaker 3: as well, younger. So yeah, so we do see a
• 16:02
  Speaker 3: lot more age populations, like you know, people getting the
• 16:06
  Speaker 3: M and D.
• 16:06
  Speaker 1: But yeah, is one of the youngest that I've seen it.
• 16:09
  Speaker 2: Was Carl from a f L that car you're talking about,
• 16:11
  Speaker 2: can't Carl web Sorry, yeah, yeah, but there's an a
• 16:17
  Speaker 2: f L. There was an AFLs.
• 16:18
  Speaker 3: Well he just passed away. But also he had the
• 16:24
  Speaker 3: M and D for quite a long time, so this
• 16:26
  Speaker 3: one was quite long. So it wasn't that quick. Yeah,
• 16:29
  Speaker 3: it was quite long. But yeah, so he had M
• 16:31
  Speaker 3: and D as well.
• 16:32
  Speaker 2: Yeah, did that did great stuff?
• 16:33
  Speaker 5: And that's what that's what I wanted to you know,
• 16:35
  Speaker 5: I know they do a great job with the Big
• 16:37
  Speaker 5: Freeze and M and D raising away and raising awareness.
• 16:41
  Speaker 5: I I can't believe we haven't everyone jumped on this
• 16:46
  Speaker 5: as a I don't know, as a as a as
• 16:49
  Speaker 5: an agent, as a country, to that whole round, whole codes,
• 16:54
  Speaker 5: all codes do it for raise awareness for this call.
• 16:58
  Speaker 5: Like you know, you don't want to be waiting for
• 17:00
  Speaker 5: it to happen in in that in that sport, you know.
• 17:04
  Speaker 4: I feel like, right now is that time to jump
• 17:07
  Speaker 4: on you.
• 17:07
  Speaker 5: Know, I know there's a lot of other diseases out
• 17:10
  Speaker 5: there that we want to find a cure for, but
• 17:12
  Speaker 5: you know, why not do it all together?
• 17:14
  Speaker 1: Now?
• 17:14
  Speaker 5: You know the Big Freeze? Yeah, we can make a
• 17:17
  Speaker 5: massive statement of it, you know, ore the other ways
• 17:20
  Speaker 5: to help raise awareness and.
• 17:22
  Speaker 4: Support this cause. Imagine the Olympic swimming team swimming in
• 17:25
  Speaker 4: an ice bath. Swim fast break some wild records.
• 17:31
  Speaker 6: If there's too much ice, yeah, ideal just bags yeah.
• 17:45
  Speaker 1: Maybe not there.
• 17:46
  Speaker 5: Backstroke yeah, it would be quick start though, yeah.
• 17:51
  Speaker 1: Yeah, every false starts. Everyone started, take your masks getting
• 17:56
  Speaker 1: in and then.
• 17:59
  Speaker 4: Said go go get out of here quickly.
• 18:04
  Speaker 1: Is that is an awareness, you know?
• 18:09
  Speaker 4: Is it someone we can go to help out? That's
• 18:10
  Speaker 4: what you're trying to say.
• 18:11
  Speaker 1: I mean, yeah, yeah, yeah.
• 18:13
  Speaker 3: I think what Neil Danahead do was amazing, right, Like
• 18:15
  Speaker 3: he did all of that and he raised nearly over
• 18:16
  Speaker 3: one hundred million dollars just for research and care raise
• 18:19
  Speaker 3: awareness in Australia. And I think that's what we need
• 18:22
  Speaker 3: in Australia to raise awareness format and urine disease. And
• 18:24
  Speaker 3: like we're saying both codes coming together and actually raising
• 18:28
  Speaker 3: awareness and actually getting some funds for research to kind
• 18:30
  Speaker 3: of actually progress, you know, make some progress, and they
• 18:33
  Speaker 3: research as well in that sense.
• 18:34
  Speaker 4: So you just mentioned care too, because that's a huge
• 18:37
  Speaker 4: thing as well, because essentially, when the nerves are dying
• 18:42
  Speaker 4: and your arms aren't working, your legs aren't working. It's
• 18:44
  Speaker 4: it's a it's a high care disease.
• 18:47
  Speaker 3: That you need twenty four hours twenty four hours care
• 18:50
  Speaker 3: and effects not just the patients, but it affects the
• 18:52
  Speaker 3: families so much as well, right, Like, I think it
• 18:55
  Speaker 3: is a it is a I think what Neil Daniel
• 18:57
  Speaker 3: had call it is the beast.
• 18:59
  Speaker 1: In that sense, it is. It is a beast.
• 19:00
  Speaker 3: You know, it's such a big of a disease in
• 19:02
  Speaker 3: a way that affects not just the patient, but affects
• 19:05
  Speaker 3: everyone you know around that pet person as well. So
• 19:08
  Speaker 3: it is huge. Yeah, they do need twenty four hours care.
• 19:11
  Speaker 3: You know, they need feeding, you know, feeding tubes and
• 19:13
  Speaker 3: things like that. So it's not pretty and it is
• 19:16
  Speaker 3: it is a you know. So I think raising awareness
• 19:19
  Speaker 3: is amazing, getting some you know, these people together, high
• 19:22
  Speaker 3: profile people together to do like big Freeze and things
• 19:24
  Speaker 3: like that to you kind of raise some funds for
• 19:26
  Speaker 3: care and for research so that we can make a
• 19:29
  Speaker 3: progress in moder unders and actually find the cure, you know,
• 19:32
  Speaker 3: a treatment that's better than what we've got now in
• 19:34
  Speaker 3: the future.
• 19:35
  Speaker 4: Well, I can we really do appreciate you coming in
• 19:38
  Speaker 4: today so much and You must really love being the
• 19:42
  Speaker 4: smartest person in every room you walk.
• 19:45
  Speaker 7: You've definitely got This wasn't a tough I think it
• 19:53
  Speaker 7: is a higher IQ better or the lower.
• 19:55
  Speaker 4: I Q.
• 19:58
  Speaker 1: Cruise. Yeah, h exactly, that's wonderful.
• 20:08
  Speaker 4: Hey it's a bitch bridge. M hm
• 20:20
  Speaker 1: H