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Speaker 1: My name is Lily Maddon and I'm a proud Arunda

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Speaker 1: Bungelung Calcuttin woman from Gadighl Country. The Daily oz acknowledges

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Speaker 1: that this podcast is recorded on the lands of the

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Speaker 1: Gadighl people and pays respect to all Aboriginal and Torres

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Speaker 1: Strait Island and nations. We pay our respects to the

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Speaker 1: first peoples of these countries, both past and present.

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Speaker 2: Hello, how's your summer going. Are you on a road trip,

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Speaker 2: are you recovering from a big party in the sun,

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Speaker 2: or are you just taking a quiet walk, whatever the

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Speaker 2: case is, You are listening to a special summer series

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Speaker 2: of the TDA Podcast. Now, the whole idea here is

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Speaker 2: that every day we're going to throw back to a

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Speaker 2: different episode from last year, and we've sat down and

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Speaker 2: chosen some of the most listens to stories of twenty

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Speaker 2: twenty two. But we've also thrown in some of the

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Speaker 2: stories that may have gotten left behind in the news

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Speaker 2: cycle and we think they warn't. A bit of an update.

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Speaker 2: Not so long ago, in November, we brought you a

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Speaker 2: bit of a different podcast episode. We had just heard

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Speaker 2: news that Chris Hemsworth would be taking some time off

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Speaker 2: acting after finding out he had a genetic predisposition to

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Speaker 2: Alzheimer's disease. We're going to throw back to that deep

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Speaker 2: dive now, but I really want you to stick around

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Speaker 2: until the end to hear some of the moving stories

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Speaker 2: we received after this episode went live. Now, I may

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Speaker 2: be in pretty decent shape. Sure, I may look like

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Speaker 2: an immortal Norse god, etc. Stop it, but I know

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Speaker 2: the clock is already ticking.

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Speaker 3: The TV series Limitless is being promoted as this revolutionary

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Speaker 3: attempt to combat aging and discover the full potential of

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Speaker 3: the human body.

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Speaker 2: Taking on six of the toughest tests of my life.

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Speaker 3: But headlines this week have highlighted just how inescapable the

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Speaker 3: reality of genetics can actually be. As part of some

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Speaker 3: genetic testing for the series, Chris Hemsworth's discovered that he

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Speaker 3: had a rare disposition to Alzheimer's disease. In an interview

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Speaker 3: with Vanity Fair, he said the discovery triggered something in him,

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Speaker 3: something that made him want to take some time off.

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Speaker 3: And this got us talking in the TDA office, not

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Speaker 3: just about Chris Hemsworth, but about the genetic testing and

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Speaker 3: what it means and what you do with that information.

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Speaker 2: This is one of those podcast topics that really got

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Speaker 2: me thinking, why don't we begin with what Alzheimer's is.

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Speaker 3: Alzheimer's disease is the most common form of dementia, and

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Speaker 3: according to the National Institute of Aging in the US,

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Speaker 3: the disease slowly destroys memory and thinking skills until you

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Speaker 3: can't even do simple tasks. Anyone can get the disease,

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Speaker 3: but it's more common in older people, and there are

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Speaker 3: also some lifestyle and genetic factors that increase that risk.

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Speaker 2: Okay, so we're talking about genetics. What did they find

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Speaker 2: in Hemsworth's case.

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Speaker 3: Well, there's no one single gene that results in Alzheimer's,

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Speaker 3: but there are some variants and mutations which may indicate

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Speaker 3: a higher risk. The APOE four gene is the strongest

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Speaker 3: risk factor for Alzheimer's. Twenty five percent of people carry

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Speaker 3: one apo E four gene. Carrying two is more rare.

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Speaker 3: Only two to three percent of the population carry two copies.

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Speaker 3: And Chris Hemsworth comes into that stat He is one

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Speaker 3: of those people.

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Speaker 2: And what does it mean if you're carrying that gene.

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Speaker 3: Well, carrying one apo E four gene means that you're

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Speaker 3: two to three times more likely to develop Alzheimer's than

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Speaker 3: someone without the genes, and if you have two, like

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Speaker 3: in Chris Hemsworth's case, you're eight to twelve times more likely,

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Speaker 3: although that number varies based on age and some other factors.

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Speaker 3: This doesn't mean though, and I think that this has

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Speaker 3: been the troubling thing when we've seen some media reporting

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Speaker 3: that you will definitely get the disease. It's not a diagnosis.

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Speaker 3: It just identifies that you'll be facing a higher risk.

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Speaker 2: So I guess now we're in this situation where Chris

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Speaker 2: Hemsworth has discovered that he has these riskier genes. What

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Speaker 2: happens now, Well, I.

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Speaker 3: Think this is the fascinating part because it goes to

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Speaker 3: the heart of what it means to have access to

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Speaker 3: this kind of genetic testing. Helmsworth said. Finding out he

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Speaker 3: has a genetic predisposition to the disease triggered something in him,

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Speaker 3: something that made him want to take some time off

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Speaker 3: from acting and to be with his wife and kids.

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Speaker 3: But in terms of the disease itself, there isn't a

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Speaker 3: whole lot that he can do. For starters, Knowing you're

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Speaker 3: more likely to get Alzheimer's than someone else doesn't really

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Speaker 3: help you plan for the disease, because there's still a

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Speaker 3: really big variation in the way that the disease manifests

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Speaker 3: in different people, even people in the same family. So

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Speaker 3: there's no real way of knowing how severe the disease

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Speaker 3: will be or when the symptoms might start, if at all.

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Speaker 3: There's also no cure for Alzheimer's, and I think this

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Speaker 3: is the really significant part. Some question the value in

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Speaker 3: genetic testing for the disease at all when there are

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Speaker 3: no cures, and it can have, of course a really

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Speaker 3: significant psychological burden on the person that is getting that information.

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Speaker 3: Experts recommend that any testing is done in close consultation

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Speaker 3: with a genetic counselor so.

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Speaker 2: There's nothing you can do if you know you have

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Speaker 2: a predisposition for Alzheimer's.

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Speaker 3: Well, there's a growing body of evidence that suggests eliminated

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Speaker 3: some risk factors can prevent or delay dementia, which again

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Speaker 3: is the umbrella term Alzheimer's falls under. Things like smoking,

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Speaker 3: a lack of physical activity, and social isolation can increase

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Speaker 3: your risk, and so knowing your genetic disposition to a

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Speaker 3: disease like this could be a motivator for some people

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Speaker 3: to make some lifestyle changes.

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Speaker 2: It's a really interesting one. We know that exercise and

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Speaker 2: diet and all of those things will lead to better

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Speaker 2: health outcomes in general, So as a genetic test for

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Speaker 2: Alzheimer's and the psychological burden that inevitably goes with it warranted.

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Speaker 3: Well, that's why I think it's interesting to think about

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Speaker 3: when genetic testing is used in a more diagnostic way. So,

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Speaker 3: as an example, if you have a mutation in the

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Speaker 3: Bracker gene, it could indicate an increased risk of various

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Speaker 3: forms of cancer, in particular breast or a varying cancer.

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Speaker 3: So let's take that breast cancer example. Thirteen percent of

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Speaker 3: the general population will develop breast cancer in their lifetime,

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Speaker 3: which is just an insane number. But fifty five to

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Speaker 3: seventy two percent of women who inherit a harmful Brack

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Speaker 3: of one variant will develop breast cana so by seventy to.

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Speaker 2: Eighty years old.

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Speaker 3: So the advice on genetic testing here is that it's

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Speaker 3: generally recommended for those with the family history of the

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Speaker 3: disease or gene mutation to get tested.

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Speaker 2: But I guess the key difference here is that there

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Speaker 2: are preventative options.

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Speaker 3: Right, Yeah, So those with the brack of one or

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Speaker 3: two mutations, can consider removal of the breast or the ovaries,

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Speaker 3: which of course is a really massive procedure. There are

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Speaker 3: also non surgical options to There are medications which lower

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Speaker 3: your risk of developing breast or ovarian cancer. You can

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Speaker 3: increase your regular screenings, and like with anything, healthy lifestyle

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Speaker 3: choices help too.

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Speaker 2: We're going to take a short break. We'll be right back, Okay.

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Speaker 2: So I understand that in cases where you're identified to

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Speaker 2: have a high risk of breast or ovarian cancer, there

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Speaker 2: are actionable steps that you can take, but in cases

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Speaker 2: where you have a high risk of developing Alzheimer's, those

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Speaker 2: steps aren't available. Is there value still in finding that

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Speaker 2: out if you can't take an action to help you.

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Speaker 3: I mean, I feel like that's a really personal question

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Speaker 3: and a really personal answer. I don't know whether I

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Speaker 3: would want to find out. It kind of feels like

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Speaker 3: someone in the office that it feels like if a

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Speaker 3: psychic were to tell you when you were going to die,

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Speaker 3: whether you'd want that information or not. And obviously there's

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Speaker 3: more of a scientific basis to this, but I think

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Speaker 3: that it would irreparably change your life and the way

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Speaker 3: that you do things and I don't know that I'd

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Speaker 3: want to know that, would you?

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Speaker 2: I think I would want to know that because I

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Speaker 2: would want to behave differently. I mean, if I knew

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Speaker 2: that I only had thirty years of cognition because I

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Speaker 2: had a higher chance of early onset dementia, perhaps I

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Speaker 2: would cram things in a bit earlier.

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Speaker 3: What about the effect on your family, because presumably you'd

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Speaker 3: tell your loved ones. Do you think that it's fair

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Speaker 3: for them to carry that knowledge with them.

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Speaker 2: I think you'd have to tell your family because you'd

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Speaker 2: change your behavior. You'd be acting and living life in

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Speaker 2: a different way. I mean, that's the reality of it, right,

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Speaker 2: If we knew the course of our life, and if

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Speaker 2: we could stare into a crystal ball, we'd behave differently.

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Speaker 2: There's all very well and good saying, CARPADM, but you

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Speaker 2: probably would act differently if you knew that there was

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Speaker 2: some sort of danger in the horizon. You couldn't just

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Speaker 2: do that without getting everyone clued in on why you're

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Speaker 2: suddenly going to Peru and climbing mountains.

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Speaker 3: But in saying that, I mean, and in Chris Hemsworth's case,

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Speaker 3: and the reason that I pointed out that I think

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Speaker 3: I've had a problem with the way that the media

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Speaker 3: has reported it, which is just to say that basically

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Speaker 3: he has Alzheimer's or he is one hundred percent getting it.

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Speaker 3: There is no certainty he will get it. There's no

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Speaker 3: certainty people who get similar tests will get it. How

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Speaker 3: do you think about that, Like if you know that

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Speaker 3: you have a hardened chance but it doesn't eventuate.

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Speaker 2: Well, I think that's the added level of complexity we

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Speaker 2: need to bring to this discussion. Is that understanding that

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Speaker 2: a it just increases your chances. It's not a guaranteed diagnosis.

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Speaker 2: But be Alzheimer's is different in different people. My grandmother

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Speaker 2: has Alzheimer's and she's at the very end of her

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Speaker 2: journey through the disease. But even in the ten years

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Speaker 2: that she's had it, it has changed so much in

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Speaker 2: what ways, I mean, different levels of cognition and memory

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Speaker 2: and understanding who we are. And I wish that she

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Speaker 2: had a better understanding of what was going to happen

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Speaker 2: to her before it did. She spent so much of

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Speaker 2: her time worrying about little things, and then all of

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Speaker 2: a sudden, it felt like to a young sam all

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Speaker 2: of a Sudden wasn't cognitively able to live independently, and

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Speaker 2: I was thinking about her when I was reading this story,

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Speaker 2: because I do think that she would have traveled more

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Speaker 2: and behaved differently had she known that she was at

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Speaker 2: at higher risk. And I guess now, because there are

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Speaker 2: genetic elements to it, we all know that we're at

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Speaker 2: a slightly high risk as well with a grandparent with Alzheimer's,

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Speaker 2: and I think a lot of Australians are having that

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Speaker 2: discussion as well right now in their minds, and that

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Speaker 2: does play a role in how I think about my life,

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Speaker 2: the fact that one of four grandparents has it.

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Speaker 3: It's something to consider, and you're right, I think that

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Speaker 3: a lot of people listening to this would also be

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Speaker 3: having those conversations and those thoughts. And I'd love to

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Speaker 3: know if anyone listening has had to make some hard

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Speaker 3: decisions based on some genetic testing. Send us a voice

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Speaker 3: message on Instagram if you have a story you want

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Speaker 3: to share. You know, for me, who doesn't face that

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Speaker 3: reality at the moment at least, it's very easy for

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Speaker 3: me to say I wouldn't want to know, but everyone's

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Speaker 3: experience is different, and would love to hear from you.

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Speaker 2: After this deep dive came out, we had some really

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Speaker 2: powerful messages come through and I wanted to share some

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Speaker 2: of them with you. Now.

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Speaker 4: Hi, my name is Astrud and I heard your episode

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Speaker 4: about genetic testing and I just thought I would wigh

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Speaker 4: in and give my point of view. So, my family

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Speaker 4: on my mother's side has a really strong history of

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Speaker 4: estrogen related cancers. My grandmother died of ovarian cancer after

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Speaker 4: having breast cancer. My mum's first cancer was breast cancer,

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Speaker 4: and we know that she has a variation of the

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Speaker 4: Braca gene.

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Speaker 5: The way that I like to explain it is that

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Speaker 5: I basically have a sister gene that is also mutated

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Speaker 5: as what Angelina Jolly has, which is why she had

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Speaker 5: a double mistectomy. My mother has survived six different types

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Speaker 5: of cancer. We know that she has not only the

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Speaker 5: Braca gene, but also HMPCC, which is to do with sphincters,

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Speaker 5: so anything that opens and closes within the body. My sisters,

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Speaker 5: I have two sisters and I are all getting genetic

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Speaker 5: testing partly because this is going to make a massive

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Speaker 5: difference in our lifestyles if we understand the risks, because

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Speaker 5: they are much greater for us. I have already had

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Speaker 5: three different breast cancer scares and one cervical cancer scare,

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Speaker 5: and so I do have to get genetically tested and

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Speaker 5: make sure that I'm aware. Has a lot of impacts

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Speaker 5: for me in my life. So it has impacted my

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Speaker 5: decision to have children. I've only just recently decided that

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Speaker 5: actually I will have children. But I am thirty. Oh

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Speaker 5: I turn I will be thirty soon, and it's taken

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Speaker 5: me this long to decide if I want children. It

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Speaker 5: also means that I can't get a lot of health

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Speaker 5: covers or insurance covers because my recent screenings have not

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Speaker 5: come back clear unfortunately, and so with my genetic history,

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Speaker 5: I am more likely to be denied certain insurances, which

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Speaker 5: means that I have to put more money away now

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Speaker 5: in order to create a health care fund essentially for me.

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Speaker 2: Later on, that message came through from Astreid. Thank you

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Speaker 2: so much for sending that through. Someone else wrote in

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Speaker 2: and had a particular question for me about what I

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Speaker 2: had to say say on this topic. They said, Sam,

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Speaker 2: you mentioned you would change how you live. Why not

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Speaker 2: implement those changes now to ensure your life is enriched

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Speaker 2: the way you deserve. I lost my Grandma's at thirteen,

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Speaker 2: which was seventeen years ago, and my parents did not

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Speaker 2: want me and my two brothers to see her the

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Speaker 2: last time they did because she could not remember us.

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Speaker 2: Plus the nursing home she was in was pretty crappy.

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Speaker 2: I think now, as a young adult, how much I

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Speaker 2: would love her to be around, to have a conversation

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Speaker 2: with her and learn from her. Also, what I'd want

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Speaker 2: most in life is for her to be proud of me.

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Speaker 2: To lose her at such a young age was devastating,

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Speaker 2: but I don't see what the early knowledge would have done.

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Speaker 2: She still loved her life to the fullest, a loving

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Speaker 2: and warm woman who was active, skiing every year and

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Speaker 2: spending time with family. My main point is, at the

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Speaker 2: end of the day, we don't know when our last

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Speaker 2: day will be, so why not just live life to

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Speaker 2: the fullest, regardless of the news you hear. Thanks for

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Speaker 2: listening to this episode of our special TDA Summer series.

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Speaker 2: We'll be back to normal programming on the sixteenth of January,

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Speaker 2: but if you want some more breaking news in the meantime,

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Speaker 2: open your phone and find us on Instagram. It's currently

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Speaker 2: where over four hundred and ten thousand Australians get their

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Speaker 2: news and we are on even though you're on holiday.