ALS - To The Moon and Back — Episode 16

This episode starts with us talking rubbish about bin chickens, bad politicians, Barbie dolls, drag queens and whether double-dipping chips should actually be illegal in Australia. Completely normal behaviour. Then, somewhere between laughing ourselves stupid and discussing “important Australian words” that apparently need to be voice banked forever, things get a bit deeper. 

We talk honestly about something that’s started happening for me recently — ALS beginning to affect my voice. It’s confronting, weird, heartbreaking and strangely practical all at once. We get into voice banking, AI technology, recording memories for my granddaughters, and why apparently I now need to permanently preserve the ability to say “mate, what the f*ck?” for future generations. Because priorities. 

There’s also a really raw conversation about illness, grief, friendship, the AIDS epidemic, people leaving too early, and the strange perspective you gain when life suddenly becomes very fragile. But in true us-fashion, even in the middle of the hard stuff, we somehow end up crying with laughter. Because sometimes humour is the only thing holding the whole circus together.

We also talk about the weird reality that living with ALS isn’t just doom and gloom every second of every day. There are moments of incredible beauty, perspective and connection in amongst it all. Plus a bit of hope — research is moving fast, trials are happening, and for the first time in a long time there are genuine reasons to believe things could change for people living with this disease.

It’s messy, emotional, funny, slightly inappropriate and very, very human. Pretty much us in podcast form.

Transcript

SPEAKER_03 0:14

Welcome to ALS to the Men and Back. I'm Lisa Wright, and my dear friend Portia Turbo joins me each week, and we actually trying to do one each week. We'll see how we go. We try and be honest, very ridiculous on a regular basis, and it's a conversation about living with ALS. But we also end up talking about travel, art, perfume. We also talk about ALS again, the treatments, the timelines, the science, the humor that keeps us sane. We talk about what's hard, what helps, and how to keep living fully in the middle of it all. So if you're joining it, please subscribe, share, and leave us a review. If you really hate it, that's okay. Just pretend you never heard of us. Thank you. Here we go. You're muted.

SPEAKER_01 1:06

Hello, my love.

SPEAKER_03 1:08

Hi, gorgeous. How are you? I'm so sorry about yesterday. That was me having a brain moment.

SPEAKER_01 1:16

I don't care.

SPEAKER_03 1:17

Well, thank you.

SPEAKER_01 1:18

I don't care. Like I obviously I cared. I was prepared, and I would like to say I was bathed and beautiful, but I was neither.

SPEAKER_03 1:28

I was just going through what we talked about last week so that it didn't double up. Earlier I said to Mark, I've got to send Porsche 10 questions.

SPEAKER_01 1:40

And you did. I'm very impressed.

SPEAKER_03 1:42

Yeah, yeah. Got through it bit by bit.

SPEAKER_01 1:45

Well, at least you've got a lot on your plates. The fact that you get around to shit makes me happy.

SPEAKER_03 1:51

I have so much on my plate. The OT was here yesterday, and I don't know what that is. Occupational therapist.

SPEAKER_01 1:58

Aha, okay, great.

SPEAKER_03 2:00

So she's coordinating some changes to our bathroom. Ah, great. Yeah, and a path around this side of the house so that I can get a wheelchair in, which means we're probably gonna have to spend money changing the back windows, which look, it'll it's it'll be a good thing. So where we're headed is a big old monster truck of a wheelchair. I love that cup. Yeah, it's a beauty, it's good.

SPEAKER_01 2:39

Yeah, because I love bin chickens.

SPEAKER_03 2:42

I do too. I never realized that they're actually indigenous. I thought that they were some you know Egyptian one, yeah. I thought they were all Egyptian ones. Somebody said to me once that at Chirongazu, some got out of their burning.

SPEAKER_01 3:00

I told you this story.

SPEAKER_03 3:02

Was it you?

SPEAKER_01 3:03

Yes, ah no, they decided they wanted them to regally walk around chirongazoo, yeah, and they were groundbreeders, which meant that most of their eggs and babies were gobbled up predated upon, I suppose. And um, and then while they were there, they discovered that well, if we lay our eggs in a palm tree, adaptive behaviors, very clever, amazing, right? And so uh during the covet drama, I started calling them Gladys bin chickens because because our premier was Gladys Berediclian, and oh with a very poor taste in men, Gladys and and a big nose. So now if you're ever walking with me and I see one, I say, Good morning, Gladys.

SPEAKER_03 4:01

Hi Gladys. Hey, I'm just gonna have I got seeds in my teeth, Matt.

SPEAKER_01 4:08

So you're talking to a blind man. You think you've got problems.

SPEAKER_03 4:18

So I've got a mate, Michael, yes, yep. He used to do a lot of um colony cat sort of stuff, like I don't know what that is. Colony cats. So um they go in, they trap neuter return cats.

SPEAKER_01 4:37

Oh, the ferals.

SPEAKER_03 4:38

Yeah, the ferals.

SPEAKER_01 4:39

Yeah, yeah, yeah.

SPEAKER_03 4:40

Yeah, but anyway, he ultimately um passed managing that rescue on to a group of other people, and now he does pretty much about 90% of his work is rescuing Ibis around Sydney. It's very, very cool. And he's done his wildlife caring um training, and so he goes in, he looks after you know, getting possums out of walls and awkward spots and stuff like that. But a lot of it is to do with the and he would kill me for saying bin chicken, but I don't think he'd kill me for saying Gladys. I like that.

SPEAKER_04 5:21

Yep, hey Glady.

SPEAKER_02 5:23

Gladys is good, isn't it?

SPEAKER_04 5:26

Good morning, Gladys.

SPEAKER_03 5:33

I thought she didn't do a bad job. I thought she was doing okay.

SPEAKER_01 5:38

If she was a dude, she'd be back in parliament right now.

SPEAKER_04 5:41

Well, yeah, hello, Angus Taylor. Hello, all of them, but yeah.

SPEAKER_01 5:47

Like it's just uh yes, let's not talk about politics because it's gonna make me throw up into my lunch.

SPEAKER_03 5:56

Dumb in the face, it's dumb in the face.

SPEAKER_01 5:59

It is dumb, it's dumb in the everything. Hey, I have new questions, Lisa.

SPEAKER_04 6:04

Ah, there you go.

SPEAKER_01 6:06

So before we actually, before we get to the questions, I'd just like to say how are you?

SPEAKER_03 6:12

Um, watching the video from last week, yeah. Um, I realized how tired I was last week. Okay. Um, ALS has decided to start affecting my voice, and that's a real thing. Um, I had an appointment with a speech therapist um this week. I've I've got a lot I can do to strengthen my vocal cords at the moment, which is what's going on. Um she was great. She said to me, which is what everybody said to me, you might notice your voice um loses some of its melody, like the up and down. Um, it might get thinner, it might get softer. Mark said he's noticing that when I speak, sometimes I have to take an extra breath as well. Okay. Um, but we've decided to voice bank already. So what we're doing is we're going through some of these podcasts, and I now have um a piece of software. It's um it will allow me to upload any recordings of my voice, and thank God there's a lot because um there's a podcast that canine ed has done as well. There's a podcast that I've been doing with you very early on, and because I knew what happened to Mix Voice, um, my friend who had this, I started singing some of the songs that I've been singing to my granddaughter, and now my granddaughters. So I've got those recorded. Um, so these can all get uploaded. So um it is AI, so it will fill in gaps. Um, if anybody with ALS out there is this listening to this, one of the things my advocate at MND, New South Wales, said, make sure you get a list of everybody's name, everybody's name that you want to be able to talk to because you know, I need to record the word Gladys now. I do, I do, and and things like your grandkids' names, and she said she had a client because he recorded everything, he was very dil, very diligent, and then he didn't record his family names, and that's sad, it makes your heartbreak. But I think now, given the AI technology, they could probably construct that. Um, you've got to go through a few levels of security when you're recording it, because you can imagine this is absolutely constructing your voice.

SPEAKER_02 9:03

Yes.

SPEAKER_03 9:03

Um, so yeah, uh we started uploading earlier podcasts, and if you go back to say, you know, podcasts in November, December, January, yeah, voice is noticeably different. Okay. So I'm sorry to hear that. Yeah, me too. It's fucked.

SPEAKER_01 9:23

Um so one of the good things about Australia is oi cunt is for everyone. Mate.

SPEAKER_02 9:35

Oh mate.

SPEAKER_01 9:38

So you need to record a bunch of them.

SPEAKER_04 9:40

Oi cunt. Right.

SPEAKER_01 9:55

Come on. You need a bunch of them. What the fuck these are very important Australianisms that you need to say for fuck's sake.

SPEAKER_04 10:24

I said to this woman who was the swing serpent, I said, um, I did this podcast with my friend Portia, who has this great voice and is actually a drag queen. And um, I think some of the curse words with their intonation would be brilliant. And she looked at me for a moment like I completely lost the plot. And she said, Oh, I I think they only do one voice.

SPEAKER_01 10:58

Did you go, mate? What the fuck?

SPEAKER_04 11:01

Oh no idea. We should ask people to send us a list of words where we should um absolutely listening.

SPEAKER_03 11:12

Send a list of words. Oh my gosh, yeah, we're on Instagram as really at the very oh my god, I I've got tears running down my face from laughing.

SPEAKER_01 11:25

Yeah, good. That's what we're here for.

SPEAKER_03 11:28

I love you so much because the hardest shit gets funny, right?

SPEAKER_01 11:34

This is the the very first thing you said that you wanted from this podcast. You wanted to dig deep, but you also wanted to make it fun for us and them, people listening for sure. Because this is important, Lisa.

SPEAKER_04 11:55

What's important too, and I'll get myself together.

SPEAKER_01 11:59

No, have a cry. Laughing, crying. Perfect.

SPEAKER_03 12:02

I love crying. Oh, there are people who like Eric Dane, the guy that was on Eric Dane. I know, right? Now, my gut tells me he probably did a voluntary assisted dying. Because you can't, I think you can get that in California. Um, the cost of medical treatment over there is insane, the cost of caring for someone is insane. As an actor, he may not have had his insurance up to date, which a lot of them don't. Um, and I just think about the speed with which his progressed was really wild. I always assume that he held off telling people about it for quite a while. I'm not sure, I don't know a lot about his story. I try not to read the sad stories about people with ALS, but I try to look at the people who have been able to do things that have slowed their ALS down. Um, but then again, you know, like we're getting to that age, you know. James Valentine passed a lot yesterday. You know, I remember seeing him playing sax in the models and seeing that.

SPEAKER_01 13:25

He came from.

SPEAKER_03 13:26

He was in the models, yeah.

SPEAKER_01 13:27

I didn't know that.

SPEAKER_03 13:28

Yeah, yeah, he was. Um that you know, that out of sight, out of mind, that big chunky sax, that's him. Okay, he was a good musician. I didn't love him as a radio presenter. I found him a little bit smug. I know people loved him and thought he was great. He just had a tone. And I know half of Sydney's crying in their cups over him today and yesterday, and it is worth crying because he was a really valuable, amazing, beautiful person who was a dad, you know, a husband. And yeah. Oh, okay. Yeah, oh, you thought he was I thought he was a sister. Yeah, I thought he might have been too, but he wasn't. Okay. Um, so anyway, he I just think we find it hard to deal with people checking out early. We do.

SPEAKER_01 14:25

Right, that is true.

SPEAKER_03 14:27

But since the dawn of time, it's happened.

SPEAKER_01 14:31

Well, having lived through the AIDS epidemic, yeah, man. Some of the most beautiful boys that I knew would wake up and find out they had HIV and then they'd go.

SPEAKER_03 14:48

That quick.

SPEAKER_01 14:49

Oh, no, they'd just take their lives, they'd be like, Oh, Porsche. It was such a stigma at the time.

SPEAKER_03 14:57

It was horrific. I remember um I worked in fashion and where I worked at was right next to the was it the Albion Street Clinic it was.

SPEAKER_01 15:09

Oh yeah, that was Red Trade Central.

SPEAKER_03 15:12

Yeah, yeah. So the corner of Albion and Raleigh is where I worked as a pattern maker, and it was, it was it was right at that time as well, where like I remember people in my building making jokes about not going out on the street, you know, and and I had a lovely guy, James Harrison, bless him. He um I knew him and he'd been a really, really successful haircutter. And when I met him, uh we were both doing a little bit of part-time work um in a call center doing those gallop poles. Oh yeah, and and anyway, lovely James, he passed away in 1992. That I was sharing a bucket of chips with him one day with a bowl of sauce, and Olivia was sitting there, and Olivia um he'd bitten a chip, put it into the sauce, and then bit it again, and Olivia stuck the chip in. I remember sitting there and part of my brain just went, I really hope that's okay. And I knew it was, I knew it was fine.

SPEAKER_01 16:30

Well, hang on, double dipping a chip is fucked.

SPEAKER_04 16:35

Like James, if you're out there, it's wrong and we don't like it.

SPEAKER_02 16:39

Yeah, Jones. James!

SPEAKER_03 16:41

What the fuck, James? For years I had a letter from him because we moved out of Sydney, yeah, and he w he wrote to me a few times. He had two white rats that he kept as pets in a fish tank, and they were called Dorison Rock. Of course they were, of course they were, but he was just a sweet, sweet human, and I think um I followed the AIDS Memorial on Facebook and they do profiles of people from that period, and the comments are what get me because there are people out there now in their 60s, 70s, even some in their 80s, who knew these beautiful young people.

SPEAKER_01 17:29

Sure.

SPEAKER_03 17:30

And it's it's tragic. What is amazing now? Have you heard that um we you can now donate blood if you're in is it a monogamous relationship?

SPEAKER_01 17:43

Uh so there's a bunch of addendums to it. Uh but I was also cut out because I was in the UK for Mad Cow.

SPEAKER_03 17:55

Oh, yeah, yeah.

SPEAKER_01 17:56

So not not only was I a sexual no no, but I also, yeah.

SPEAKER_03 18:06

Yeah, I've got a girlfriend who was over there for through that period as well.

SPEAKER_01 18:10

So funny that you're a pattern maker.

SPEAKER_03 18:12

Yeah, I was too, yeah. You went to Ramwick, so did I.

SPEAKER_01 18:16

I did not go to Ranwick, I went to Hornsby.

SPEAKER_03 18:19

Oh, why did I think it was Ranwick? Okay.

SPEAKER_01 18:22

Yeah, I went to Hornsby.

SPEAKER_03 18:25

When my kids were little, I used to make their clothes a lot. Yeah, right. Yeah, yeah. Really cute little outfits.

SPEAKER_01 18:33

So Mum used to make ours, which is where I learned to sew. Oh, you're joking. No, no, she used to make her outfits and she would never let me make outfits, so I had to make Barbie frocks for my sisters and eventually my Barbies.

SPEAKER_03 18:49

Oh, that's so cute. You know, we were the parents that thought, I don't want Barbies in the house, I don't want that body image around my daughter. Anyway, Olivia got given, oh, this is my mother. My mother came to visit at Christmas when Olivia was about three. She gave Olivia, she knew we didn't want Olivia to be given Barbies. So she gave Olivia Barbie furniture. So we went up to Lismore because we were living in that part of the world. Went to the Lismore car boot market, and Olivia had five dollars to spend. She managed to find two butt-naked barbies that kids were selling at the market, and so she finally had her barbies.

SPEAKER_04 19:44

Wow, yeah, and one she called Bush Barbie because she was from from from the bush, and then the next one was called Bimpo because she had no clothes on. So Bush and Bimpo, she finally got so mum didn't want us to have Barbies either.

SPEAKER_01 20:13

Oh wow, so we had Cindy dolls. I don't know if you remember that were the English version with more human body shapes, yeah. Um but of course we ended up with Barbies.

SPEAKER_03 20:28

Everybody ended up with Barbies, and um do you remember Dynamite Diner? No, Mike Diner was the one that I ended up sort of getting, and um, she was more of a Susie Quartre style of Barbie.

SPEAKER_01 20:44

Well, this explains so much.

SPEAKER_03 20:49

I loved her, she had a combi then and everything.

SPEAKER_01 20:53

I just I just recently got sent a photo of myself in my very early years, and I've got this long blonde.

SPEAKER_03 21:02

I was gonna say, you would have been cute as a button.

SPEAKER_01 21:05

I was a Barbie. Um early years of drag. I was a Barbie. I've got this long blonde wig on, and my legs just go forever, yeah.

SPEAKER_03 21:17

Yeah, yeah.

SPEAKER_01 21:18

Not anymore. Not anymore, Dal. I feel like somehow my body sucks my legs up into my stomach. Hey, I have a question for you.

SPEAKER_04 21:32

Yeah, retractable legs.

SPEAKER_01 21:34

I mean, sadly, no, sadly no. They're just I was so thin and yeah, on such high heels that it looked like my legs went forever. Lisa.

SPEAKER_03 21:44

Yeah.

SPEAKER_01 21:45

What is something about living with ALS that would genuinely surprise people?

SPEAKER_03 21:53

That it's not all shit.

SPEAKER_01 21:56

Oh wow. Okay.

SPEAKER_03 21:58

I

SPEAKER_01 22:00

Call of me generally surprised, genuinely surprised.

SPEAKER_03 22:04

There's some things about and I had this conversation um with Mark. We were driving out to parks, and I also raised it with Steve, who I do tapping with. Yep. Um because it's been coming up for me a little bit. When you're sick, people are nicer to you.

SPEAKER_01 22:25

Oh, okay. It is, but I'm not sure it's worth it.

SPEAKER_03 22:31

No, it's definitely not worth it, but it's like there are benefits to being unwell, and I don't want to say that like that's a great thing, but it's an aspect of me being sick that I've started to think about like what do I get out of being unwell. I don't, and this is just my own personal philosophy. I may not have a choice about the outcome of this illness. I do think that there is an element of what do I get from it? And I don't think I chose it. I think you find yourself in it and you just go, okay, you know, I spend a lot of time with my favorite person now. Um we don't argue about stupid stuff anymore.

SPEAKER_01 23:28

Oh my god, that must be upsetting.

SPEAKER_03 23:31

Well, we do, but we get over it really freaking fast, you know. Yeah, yeah, you don't walk around holding on to the fact that you've emptied the dishwasher three times out of the last five, you know.

SPEAKER_01 23:43

Like I have we have very strict rules here about that. I pack, he empties, and then it's done.

SPEAKER_03 23:52

Yeah, but what happens if you decide that you want to empty?

SPEAKER_01 23:57

Oh, so if I hear Jin emptying, yeah, and I feel the spirit sister, I'll go out and help. But if he comes in while I'm packing, get out, be gone, be gone, man.

SPEAKER_03 24:12

Yes, yeah.

SPEAKER_01 24:14

So this is like that what we were taught as kids. Yeah, you cannot change the way that people treat you, but you can change the way that you react.

SPEAKER_03 24:24

And you can change the way you react to this illness, for sure. Now, I read a post last night from a guy that's in healing ALS, he is 14 years in with this. Wow. I've told you that people with concussions, head injuries, sports people are represented disproportionately highly with ALS. He was an American football player, he is an African-American guy from Alabama, um, and he is now a hundred percent paralyzed, he has no voice, he has to use eye gaze technology to communicate.

SPEAKER_02 25:12

Right.

SPEAKER_03 25:13

And he wrote a post that is truly humbling, and I'll just I'll cry into my cups again if I read it out. Oh no, please no, in it he talks about the fact that in that space of being like that, he said it's not all torture, because for you and I we think about that and we go, man, that's torture. Like for me, that's probably a long way past when I would want to activate a VAD.

SPEAKER_02 25:49

Yep.

SPEAKER_03 25:50

Um but for him, he's a deeply religious man, he's got two daughters that are going to college, he's really he's got things he wants to watch out for, you know. Um, but he talks about the fact that you know it's the appreciation of things that you learn when you're in this state. Like you appreciate what you like every morning. I wake up, I don't think my garden has ever looked as beautiful as it does now, you know?

SPEAKER_01 26:25

Because yeah, so Lisa, would you do me a favor? Yeah, put that poem with this podcast so everyone can read it, including myself. Oh yeah, yeah, get your tissues ready. Well, that's okay, that's okay. I'm all up for feeling and emotion.

SPEAKER_03 26:46

I don't do it very often, but you know and I think about Kerry because he um I think he's using a lot of AI technology technology to generate cartoons and things like that. But he everything again, he puts pictures of himself in there, and I think this is a guy who would have been the shiz, you know, full scholarship to university, like playing gridiron, and then bang, this like this is not an uncommon story for athletes, right? It's not footballers in uh like ALS are really, really disproportionately represented. Um interestingly enough, this morning, as I was thinking about like Carrie, and um because the algorithm knows I've got ALS, I get things thrown up. And there's a woman who it's called when ALS is Lyme disease. And I know we've talked about this before. Yeah, we have. We have. There's a woman who put a post up this morning. Now she's getting herself documented through Duke University in the US. She was told she didn't have Lyme disease. She went out and got this test done that's been out for a little while, and sure enough, she had the spirochets that are Lyme disease. She's been treated for Lyme disease. Now, on the ALS um functional score, it starts at 48. I'm sitting on about 38 at the moment. She was as low as 28. So 28 is a significant loss of function compared to where I am now. And I am very obviously disabled now. And um are you? Yeah, I get around in a chair, I I don't cut my own food anymore. You know, I find it hard to hold a fork. I eat using a spoon. Okay.

SPEAKER_01 29:00

Um, there's to be fair, this is a princess's life.

SPEAKER_03 29:06

So again, another benefit. Um, nobody expects me to have good table anymore.

SPEAKER_01 29:21

Will there come a time where minced meat and soup are what you eat?

SPEAKER_03 29:27

Um well, it's funny you should mention that. Out at parks, Mark and I listened to an Australian woman up in Bris Vegas who she's seven years in, she's non-verbal, she's completely incapacitated, she's up there with where Kerry Good is. Okay, she traveled from Brisbane to like Toronto, I think, to do a presentation. What on stage? Her oxygen level, and now I don't know what this percentage was, but it's very low. She managed to fly over there and she has managed to avoid a peg tube, which is the tube into your stomach.

SPEAKER_02 30:10

Yes, yes.

SPEAKER_03 30:11

That I have drawn the line, she goes, it makes it hard, but I have actually been able to continue a normal diet. Wow. Yeah. So ALS is one of those where there's a will, there's a way as well. Um, you know, and again, I've got to say, like this week we went to Annette Kaluman for a swim at Barrickville, and I was talking to Mark about how if I end up floating on my back, I can't get my legs down. And we've worked out that if I roll over onto my stomach, which you don't want to do because I worry about then I can't get my face out of the water.

SPEAKER_02 30:54

Yes.

SPEAKER_03 30:55

I have noticed I can actually now pull my legs down underneath me. Now I couldn't do that back in Thailand. I was walking around completely unaided, but when I was in water, I could not get my legs underneath me once they run. So I don't know whether it's the trial drug. Um, I feel like it the weird thing is that there's some strength in my right arm where all this started that wasn't there before. Occasionally when I'm meditating, I can feel it in my legs. Um, that I'm just getting this warm sort of it's not even pins and needles, it's a bit of a hum. And so, yeah, I think I'm like I I don't know if it's the drug.

SPEAKER_01 31:45

Woohoo! Hello, Mark and Mark.

SPEAKER_03 31:48

Yeah, so um I guess really you don't know, and that's for me. I guess if the good things are those things that we've talked about, the hard thing is you just don't know where it's going. Sure. It it's nobody's ALS travels on the same trajectory at all.

SPEAKER_01 32:13

But that also means that your fights could work exponentially better than someone else's has.

SPEAKER_03 32:23

It absolutely does, and the good thing is is that more and more people are finding ways to slow it down. Right. Um the medical community, there is something like seven or eight areas of research that they're very optimistic about. Um conservative neurologists are saying we're, you know, three to five years off a cure. So yeah, for shocking. Wow. Yeah, yeah, it's happening. Like Macquarie are doing this one at the moment where they inject your cerebellum, they're repairing SNPs in your DNA. Um, my DNA is now back, um, and I'll find more about that next month. But um, which has been a source of frustration for me. But at the same time, um, there could be elements in the research out there globally that says, oh, she's got this gene and this gene. We know that this drug works really well with her.

unknown 33:25

Right.

SPEAKER_03 33:26

So they'll be able to go, yeah. And and really, you know, it'd be really nice to think that we could slow it down long enough to get over that line.

SPEAKER_01 33:38

That's the dream, huh?

SPEAKER_03 33:39

Yeah, that's the dream.

SPEAKER_01 33:42

That's not a big that's not a bad dream.

SPEAKER_03 33:44

That's a that's that's an awesome dream.

SPEAKER_01 33:46

It's a really good dream.

SPEAKER_03 33:48

It's a great dream.

SPEAKER_01 33:50

And I love that they're starting to take it seriously.

SPEAKER_03 33:54

They have to take it seriously.

SPEAKER_01 33:56

Well, they don't have to do anything, Darl. No, let's talk about the medical profession it historically. They don't usually until they think that there is a payoff at the end. All right, I'm gonna invite Mark in on the podcast because he's got something to say about what's happened in the this is the husband of Lisa and dead set spunk. Oh, you just you just flatter me there, Polisha. Well, if you'd put your head in and everyone could see, please. I'm like, we're part of the magic.

SPEAKER_03 34:32

So we're talking about the medical profession and a doctor.

SPEAKER_00 34:38

So one of our medical uh professionals, um, I had to call and ask for some paperwork was fairly urgent because it was required for um for another government department, Centrelink, etc. And um, and after very difficult um discussions, just trying to communicate what we want, because the very first thing that they uh they seem to be trained to do is to tell you they can't help, yeah. All right, or we won't be able to help you on that straight away, etc. They've come back to us, and then and I've interruptions after interruptions after interruptions through two people.

SPEAKER_03 35:19

So when Mark was talking to uh, they were talking over the top of him repeatedly.

SPEAKER_00 35:24

Yeah, so yeah, I was I believe justifiably unuh frustrated, but not angry. I said no nasty words, I didn't suggest anything about them personally or professionally. I said Mark, I need to tell you, you I need to you need to understand what I'm asking so that the message gets to the doctor. Yep and um as a result of that conversation, um I was hung up on by one of the by one of them.

SPEAKER_03 35:54

Yeah.

SPEAKER_00 35:54

Uh and then after I called back and and you know genuinely apologized for any upset that I may have caused, right, inadvertently, but not you know, as a result of this frustration. Anyway, we got a letter. They they provided the the paperwork we asked for. Yeah, right. They didn't they didn't do it in the way we asked for, which is specific to the government to require because they didn't listen. Because they didn't listen, they won't listen, they're too busy telling you what they can't do. Yes, and then they at the end of it, she said, and if you're not satisfied with the care, we'll transfer Mrs. Right away. So they're threatening to cease to they're saying, Well, if you don't play ball with us, right, we'll move you somewhere else.

SPEAKER_03 36:46

She'll have to go elsewhere further.

SPEAKER_00 36:48

So they're prepared to penalize Lisa, right?

SPEAKER_03 36:51

Because I couldn't communicate very frustrating, very frustrating and incredibly unprofessional. I don't even have an ongoing appointment with them. They so yeah, we're we're moving away anyway.

SPEAKER_01 37:06

You need to go back to the the um radio and television about that, and just about how appalling. Yeah, but they really do, and they will eat it up because this shit needs to be called out, Lisa.

SPEAKER_03 37:24

It's outrageous, and the thing is, what I keep thinking is that Mark and I are pretty we're we're not that intimidated by the medical profession.

SPEAKER_01 37:35

Well, that's why they hung up, yeah.

SPEAKER_03 37:37

Well, you guys but the same person that suggested moving my care away has never met me, she's never had anything to do with my care.

unknown 37:48

Sure.

SPEAKER_03 37:48

She is a doctor that this was passed on to. However, she and I did have a phone call where she rang me and repeatedly told me that I didn't qualify for a trial that was still open, like was barefaced lying to me about it, and just kept reiterating to me that I was not gonna qualify.

SPEAKER_00 38:16

And also when we asked for uh for some um test results um to be provided back to us, these are test results on Lisa about her. They've said, Oh no, we won't provide that to you.

SPEAKER_03 38:32

Not only did she say we won't provide it, she said that's not something we would do. Now I said yes to what I was told would be a 10-minute scan of my brain. I was in the machine for an hour and they took 2,500 slides of my brain, and I would not have consented to that. I asked the person at the time who was conducting the research, I said, So will I get the results of this? And she said, Oh, yeah, yeah, in April. Um now they've said they would never have said that.

SPEAKER_00 39:06

And then it's it's almost like they say, they say, Oh, hang on, this is your power, this is your reality. We'll just switch it up, we'll just white out this, right? Um, gaslight you and say, No, that it never would be like that. You know, I feel like we should be recording conversations.

SPEAKER_01 39:25

Oh no, no, no, you should be, you definitely should be recording conversations. Um, also, did you ever read the book about Helen Lax? No, Helen Lax, uh, an African-American woman in America. Uh, she got a cancer, a particularly virulent version of cancer, and the doctors stole her cancer, and it became uh what what does it mean when when it doesn't die? It is uh culture perpetuated, but what whatever it is, it that her cancers don't die, right? Her family is living in poverty, about 90% of the research before 2010 or something is done with her cells, which have um in culture. Oh my god, and they receive nothing, and they receive nothing because the medical profession aren't actually nice people, uh, but interestingly, she got back at them. Her cells were so strong that if it was in uh a scientific area where everyone was doing different cells, her cells would turn the other cells into her cells, other cancer cells. So all of the um the scientific study that has had her cells even near um other cells is now actually null and void. Null and void.

unknown 40:56

Wow.

SPEAKER_03 40:57

I know and not I'm gonna leave you. Yeah, yeah.

SPEAKER_01 41:01

We love you, Mark. Thanks for watching. We love you so much.

SPEAKER_03 41:04

We'll we'll fin be finishing up in a bit, but um Oh my god, we've been talking for an hour and ten minutes. Oh my god, we're about to um oh no, hang on, no, we haven't no third, we start where we went to um well, where I'm doing the trial, I walk in there, I get greeted by name by three people. Usually the head of the department walks out and says, hello to me, ask me how everything's going. Um, the culture is so glaringly different to what we experienced over at Ramwick. I just I can't like what gets up my nose the most is that I'm not going in there with you know osteoarthritis, not that I'm trivializing anybody's health condition. This I'm going in there with an illness that is considered rapidly progressing, changing all the time, and they're managing me as an outpatient with no ongoing communication unless I instigate it, and then we get told the doctor is too busy. Like my DNA panel should have been back within three months of my diagnosis. I should have been sent off, I should have had that blood test, and I should have been counseled and given the results. The fact that I won't get that until mid-May is a source of distress to my daughter, it's a source of distress to me, and for all I know, it could change the way I get treated. There is multiple drugs out there now looking at various strains of ALS and they're having success. So I what what would you say to that, Borsha?

SPEAKER_01 42:56

It's okay. I would say you need to go to the media. Yeah, it's worked for you before.

SPEAKER_03 43:02

It has. It has. What I get the feeling of is that these people get nasty. I think they get nasty. Yeah.

SPEAKER_01 43:12

Like you're not going to change the way this particular person is, but calling them out might change the role that they are in.

SPEAKER_03 43:21

Look, my take on it is what happened the other day is that the person that got upset, and then the other person that she works with got on the phone to Mark. Now I know both these women, they're mid-20s graduates, getting asked to answer phones. And and they're probably my take is that they're in a situation with what's going on above them is not meeting the needs of patients, and these two people who are sitting there are expected to be the the firewall to stop that these people who are not getting their needs met getting further up the chain. Now if they don't want ALS patients in there under their care they should just come out and freaking say it. Well they'll just go somewhere else you know that's I have I've gone somewhere else.

SPEAKER_01 44:21

This conversation needs to happen in a public forum.

unknown 44:25

Yeah.

SPEAKER_03 44:26

Seriously I think it kind of just did. No no yes yes you're right you are right uh maybe you should send this podcast this particular one yeah up the food chain to the media yeah okay something to think about um so as a wrap up we have a family photo shoot here today and the weather has turned itself on in full how gorgeous is it it's amazing up here today it's so beautiful um I'm off to get my hair cut because lady you're gonna be so pretty yeah I am so yeah my my my lovely daughter has organized this um and then tomorrow we're off to Wagga overnight because Oni Dog is in an agility truck woohoo woohoo but we will be coming out to Lock is you will not yeah we are Mark and I've spoken about it we're gonna do it I'll have a nap get up about three get out there we'll be perfect yep amazing I will love that I will love it so much I'll put you on a team you'll have people to talk to it'll be great it'll be great what are you up to this weekend well Locke's is on yeah even though it's a Anzac weekend uh I have today at leisure but it's not actually at leisure I have a whole bunch of catching up to do I'm I'm trying to clear out a bunch of my fragrances that haven't been worn for the last year or two so they're all over the floor like picking my way into the computer currently is just are you still finding it hard to let it go oh so hard let it go let it go I will not let it go Lisa but but some of it has to go because it's just not getting worn and not getting loved and some of them are really unbelievably special um discontinued fragrances that need to be out in the world being sprayed yeah yeah so there you go that's my that's my weekend gin has gone back to work today he's been sick now for nearly two weeks yes uh it's a cough that has been running up from his head down to his chest oh no and we we had he had fevers for a couple of days um yeah uh he doesn't have covert so he's tested for that um yeah yeah there's all those RSVs and all kinds of look it could be anything uh so yeah so we haven't had a hug for over a week and that really makes me sad oh yeah I hope he's feeling better yeah I hope you're feeling better yeah I'm fine I'm good I'm fine I'm good shut up is it yes you are baby you are getting really hot here I go I'll edit that cough out no keep it in it's who you are you just coughed it's just a cough everybody um all right go become the most beautiful Lisa that you possibly can for the family photo and um we'll talk next week love you to the moon I love you to the moon and back that was good fun yeah always good fun right by beautiful bye back and that was this week's episode of A Less to the moon and back thanks for listening and if you can share like review I will always be incredibly grateful and we hope to see you next time around thanks again