ALS - To The Moon And Back Episode 12

New Episode: ALS to the Moon and Back – Episode 12

Ohhh my… this one’s a bit of a ride.

Portia and I kick things off completely off track (as usual), wander through grief, a bit of politics, a few strong opinions, some questionable humour… and then eventually remember we’re meant to be talking about ALS 😅

We get properly stuck into what I’m calling the “why we can’t” attitude — especially in healthcare. You know the one… where the answer’s no before anyone’s even had a crack at finding a yes.

And I’ll be honest, I think I’ve hit my limit with it.

When your time suddenly feels very real and very precious, being mucked around, brushed off, or told something can’t be done — it lands a bit differently.

There’s also a bit of a rant (fair warning) about being stood up for appointments — twice 🙄 — driving all over the place for things that don’t happen, and that general feeling of “you’ve got to be kidding me.”

Plus a classic moment in a mobility shop where everyone’s trying to help… but no one’s actually listening. I may or may not have lost my patience over socks. It happens.

Portia, as always, brings the laughs, a bit of perspective, and the occasional “pull your head in” moment — which, to be fair, is sometimes needed.

But… it’s not all doom and gloom.

There’s actually some really good news in here.

I’ve been accepted into a clinical trial that’s looking at treating what’s actually going on in the body — not just managing symptoms. And that feels pretty bloody significant. 

We chat about what that means, what’s coming next, and that weird mix of hope and disbelief when something positive actually happens.

Anyway… it’s a bit messy, a bit funny, a bit raw — very us.

Have a listen ❤️

Transcript

SPEAKER_02 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. Hey lady, you lady. You know what? I could just see. Have you done that as a drag number?

SPEAKER_03 1:14

I never have, but I sing it when I pick up the telephone.

SPEAKER_02 1:17

I can see you doing that in drag. I can.

SPEAKER_03 1:24

You know, I don't really do numbers very much anymore. Don't you? No. I'm too old, too fat, too lazy.

SPEAKER_02 1:33

Lazy people still can belt out a number when they want to.

SPEAKER_03 1:36

Speaking of drag, we lost Maxie.

SPEAKER_02 1:39

Oh, yes. Yeah. Now I understand that um she came back from Edinburgh. You give me a bit of a synopsis, because right.

SPEAKER_03 1:51

So she was at the Edinburgh Film Festival. She collapsed, I think it was mid-show. And then they diagnosed that she had throat cancer. So she couldn't finish the run.

SPEAKER_00 2:03

Yeah.

SPEAKER_03 2:04

Uh they got her back here. This was only like September or October last year. Yeah.

unknown 2:10

Yeah.

SPEAKER_03 2:10

They did the surgeries. She was doing the chemo. And now I'm not close enough to her to know about her last days. But the week before she died, she came back and was doing shows.

SPEAKER_02 2:26

So I could be wrong about this, but I thought most types of throat cancer was very treatable these days.

SPEAKER_03 2:34

So Varun lost his brother to throat cancer not so long ago. Um I I think everything depends on where else everything went.

SPEAKER_01 2:46

Oh okay.

SPEAKER_03 2:47

Like I don't know about Maxie. I I cannot speak for her because I just am not that close in her circle. We were friends when she first started, and uh I gave her jobs throughout her life.

SPEAKER_02 2:59

And she was from Sydney originally, or no, she was a Nara girl. Oh wow, my neck of the woods down here, right?

SPEAKER_03 3:07

Yeah, so she was a Naura girl.

SPEAKER_02 3:09

Wow, and Courtney at um at MyGrab gave a big shout out to her as well. Couldn't have been more than 50.

SPEAKER_03 3:23

51.

SPEAKER_02 3:24

Really well.

SPEAKER_03 3:25

So Courtney's best friend is Vanity.

SPEAKER_00 3:29

Yeah.

SPEAKER_03 3:30

And Vanity and Maxi lived together for years. So they were this really tight kind of circle.

SPEAKER_00 3:38

Yeah.

SPEAKER_02 3:40

51's too young, isn't it?

SPEAKER_03 3:43

I feel sorry for David, a beautiful boyfriend.

SPEAKER_02 3:46

Really?

SPEAKER_03 3:47

Yeah, he's writing the most heartbreaking, I've lost my person. Oh like, oh yeah, yeah.

SPEAKER_01 3:58

That's what happens when we lose people we love.

SPEAKER_03 4:01

Yeah, well, even people we hate.

SPEAKER_02 4:03

Yeah. I I I won't cry when Donald Trump falls off the perch.

SPEAKER_03 4:09

Right. So I have a I have a sentence about this.

SPEAKER_02 4:12

Yeah.

SPEAKER_03 4:13

I don't wish anybody harm, but when it happens to some people, I will applaud.

SPEAKER_02 4:18

Yeah, yeah, I think so. I think there's four or five assholes out there that are grinding the world into submission, and they all should fuck off. I've I've wondered because we've got a mate, Livy did acro with this uh woman when the Livy being your beautiful daughter, yeah, and my lovely, my lovely daughter, and um Lucia Osborne Crowley, and she went on to do a law degree, and she now works as a journalist for The Guardian. Wow, yes, and she was in the courtroom when Ghlaine Maxwell was tried in New York, and yeah, and one of the things that I know I've noticed when I do these podcasts, I say, and one of the things, and what I think I'm gonna have to think of better things that lead me into my thoughts, but why what I think is fair because you're saying this is an opinion piece, and it is just my opinion, yeah, and what she's brought to the table and really raised my awareness of, and she's only about 32 now, she's a baby, but we keep making excuses or we keep naming the men rather than interviewing the women, and women are out there happy to speak, happy to talk, and we keep talking about the men. We need to raise these women's profiles.

SPEAKER_03 5:46

So the women that were sitting behind, I think it was Bondi, but it might have been known during one of the yeah, one of the women who had been part of the I'm sure they get to talk, but we don't get to see it.

SPEAKER_02 6:03

Yeah, and Virginia Griffin, you know, I think the the level next level of hell that she's gone through to get to the point where she took her own life, I just think like what was it gonna take for her to be believed? And and she's not here to see the and did she take her own life? She did. Oh, and yeah, well, you know, there's a few people falling off the perch that just at the crucial moment, aren't they? Yeah, well, gee, I hadn't thought of that. Awkward moments, aren't they? I I just you know, when there was all those memes playing around with Andrew the rapist, um uh because that is his title now, isn't it? You know, yep, and um and people were making jokes and sending them around, and I thought, yeah, but for every woman that sees that it's the horror of what they went through, and and it's you know, like I can't even make my own emotions clear on it. Can you imagine if you're one of the women that was out there trying to be believed, trying to get traction, trying to get serious action on this, and the most we can do is come up with a meme ridiculing this guy?

SPEAKER_03 7:28

Hang on, come up with a meme ridiculing a man who has been charged.

SPEAKER_02 7:33

Thank you. Thank you for that clarification.

SPEAKER_03 7:36

One of the only men in this whole fiasco that has been charged.

SPEAKER_02 7:42

Honey, but is it this is he has he been charged for the sex crimes?

SPEAKER_03 7:49

I don't know what the charges are, but and his brother was the one who said enough come on in.

SPEAKER_02 7:58

Bring him in. Yeah, wow, that's one way to get your brother freeloading off your back doorstep, isn't it?

SPEAKER_03 8:05

Well then you know the sad the saddest thing is for his two children, yeah who will also be cut off from the family tree, which means cut off from their funds.

SPEAKER_02 8:19

Well, I think didn't they receive funds from Jeffrey Epstein directly? As teenagers, which Oh, I didn't know that. Yeah, that was something I read the other day in The Guardian. Um and it just rings so true how the women are not believed in any of this. Yes, you know, and I I think now that at the end of the day, um this has gotten so big. Like I heard the other day that the Polish president or prime minister or whatever he is, and I may have mentioned this in a previous podcast, um, he has now launched an investigation. I think this has um expanded way beyond the borders of America, so it can't be contained any longer. And I think I think really good. Yeah. You know, one of our earlier podcasts, I made a joke about David Copperfield, and and I joked about it, and I've kind of regretted that because this isn't a joking matter.

SPEAKER_03 9:25

You are allowed to make jokes about people who have been busted for doing the unthinkable.

SPEAKER_02 9:33

Deepact Chopra. I I thought that guy was great, and I think there's some huge number of emails backwards and forwards, and he's a croupozoid.

SPEAKER_03 9:44

So I feel like it's a bit like Scientology.

SPEAKER_00 9:49

Yeah, you find out who's in, you go, What?

SPEAKER_03 9:53

No, but it's this cult, and they all work towards each other's benefit.

SPEAKER_02 9:59

Yeah, yeah, yeah. I just think it's really the insane how, you know, but her emails and how he was going along, and Qnon were out there carrying on about how um the Clintons were involved in sex trafficking rings, and it kind of wasn't. Well, maybe one of them were, but it I don't think it was Hillary, for God's sake.

SPEAKER_03 10:26

Well, isn't it interesting that the one woman not named is the one who said, I'll stand up, put a put a camera on me.

SPEAKER_00 10:35

Yeah, oh no, we don't want you.

SPEAKER_03 10:38

I don't care. Do it, she says. So let's not forget that two of our own ex-prime ministers sent letters of moral support to a convicted pedophile to help him to help him get out on a technicality.

SPEAKER_02 10:57

And that was Howard and Abbott.

unknown 11:00

Yep.

SPEAKER_03 11:00

That John Howard and Tony Abbott.

SPEAKER_02 11:03

John Howard and Tony Abbott. Um can I also reiterate that there is a huge amount of money going towards Pauline Hansen at the moment by Gina Reinhardt, who had posed quite happily at Mar-a-Lago. Yep. Scotty from marketing.

SPEAKER_03 11:24

Hey, they were all there.

SPEAKER_02 11:26

Yeah.

SPEAKER_03 11:26

She took a whole plane load.

SPEAKER_02 11:29

Oh, did she?

SPEAKER_03 11:30

Well, there was her and and yeah, there were a bunch of them. So sadly, I have no memory and I can't name names, but but I remember there were four or five of them. Yeah, Barnaby were all there. Now it's a quarter past.

SPEAKER_02 11:44

And we've we've bitched about everything but ALS.

SPEAKER_03 11:47

Right. So I have a question for you today, Lisa. Today we're going to talk about uh the attitude gap. You've talked about providers leading with why we can't.

SPEAKER_00 12:03

Yeah.

SPEAKER_03 12:04

Can you unpack that? Like this is an interesting thing. Like, why we can't is their first opening gambit. As you say, I like to think they say why we can't.

SPEAKER_02 12:16

Why we can't, I think. I didn't get it's I think there's hierarchies, there's chains of command. Um I had someone who, if I say what sort of ancillary service they provide, I'll probably identify them, was too concerned to basically take on an aspect of management at community health in Wongong because of the ramifications that would come down upon them. Um, and that was that was within that was with regards to the delivery of uh Redakava, Adara Varone. Um, and she asked me to forward her the letters that I got from the minister and ABC, so she had something to sit there and go listen. Right. And funnily enough, the week that that all kicked off, we got a call from Community Health in Wollongong telling us that it could be provided there. Um, apparently there's people, and and I've just got to make it really clear that not everybody has private health insurance like me. Um, we've been in the same private health fund for close to 20 years. We've got a um tier that is no longer on offer.

SPEAKER_03 13:43

Wow, you're grandfathered in.

SPEAKER_02 13:45

I grandfathered in. They've told us whatever you do, don't walk away from this one because you will not get something so good. Um, we've had to pay one not to$500, and then every other service that we've had has just been come through free of charge.

SPEAKER_00 14:00

Wow.

SPEAKER_02 14:02

Yeah. Can you imagine if you're on a pension or you just do not have the financial means to be able to get a private nurse in and you're relying on Medicare, you had no avenue outside of we had no avenue full stop. Like I was at um Concord Hospital the other day, and and remind I'll elaborate on that, and they again referred to these two private nursing services as being able to deliver the drug. My dogs are up in arms and nothing here at the moment.

SPEAKER_03 14:40

And um because I've lost I've lost what you're talking about because they're cancelling out all the noise. So go back two sentences.

SPEAKER_02 15:04

And they rolled off the two um private nursing services. So these two nursing services have literally gone in, I think, probably lobbying to get business. Um, I was told that though that you know the people at NURA and these two nursing services were at this get together and they all knew each other, and they were all lovely, such lovely people. Um so me saying that, okay, so one of these people that you think is lovely literally withdrew service from me, leaving me without any avenue. And as it was, I did. I missed a week in my um, and I do think, like Matt said to me today, your next area of advocacy. I actually think that um we need to lobby. And I think MND New South Wales should be um maybe up for this, so I'll take it to them. They should not be able to withdraw service if you have no other avenue to get treatment. And the nurses that I tell them about this over here, that are all New South Wales health nurses, they they are just horrified. Like, you know, I'm going out to Uluru on the 2nd of April, they've adjusted my um infusion schedule so that I can have those infusions in the window, and that means that on Saturday and Sunday, a nurse will come out to the house to do the infusion. Like that's amazing. That's amazing. Like, I and I know we we like to whinge about health services, but I've got nothing but praise for the public health system with regards to this once we could get it up and running. And and it seems that you've got to agitate, but the the people on the ground are bloody brilliant. I I am yet to meet someone who I think should not be in that role. You know, they're all they're all kind, gentle, enthusiastic, and truly concerned. And I even see bumps. I one of them I know um has done end of life care. And I've thought, well, you know, if and when I get to that point, yeah, I'd be more than happy for her to be there.

SPEAKER_03 17:20

Wow. Is she a jeweler?

SPEAKER_02 17:22

Um, her name, her name is Janet, and I don't know if she's a jeweler.

SPEAKER_03 17:28

That's what they do, right? Jeweler, D U E.

SPEAKER_02 17:31

A jeweler. A jeweller. Well, I don't know. She's a community nurse, and I um and community nursing also is involved in palliative care. So maybe ask the question next time. Yeah, yeah, she is. She's a really nice woman. I could do that. Um, and my I've got other bits of news to cover off today.

SPEAKER_03 17:51

And um hurry up, I'm a gog.

SPEAKER_02 17:54

Yeah, so um I think I might have mentioned when you were here for dinner about how I'd gone to Concord Hospital. Yeah, and I've been the same.

SPEAKER_03 18:05

By the way, before you go any further, that dinner was amazing.

SPEAKER_02 18:08

Oh, thank you, babe. It was so fun, and they're in Korean now, those I just sent them shit to do. Oh, good, good. Yeah, it was really good. It was a great night.

SPEAKER_03 18:20

And um no, we're not gonna we're not gonna be sidetracked now. All right, so you're a conclusion the hospital, my mother and father metad.

SPEAKER_02 18:28

Oh it's got vibes, that hospital, it really does. Um, so yeah, I I went out there, so I think it's the Nerve and Brain Center, which is I think partly funded out of Sydney Uni. Um, they're a really nice team. I like them a lot. Um, and so I think I mentioned I came home uh back in January, and I was thinking, I'm not getting referred for any like trials or anything. So I wrote off to a few and they wrote back to me pretty much straight away and said, we'd like you to come in, you need to get a referral. And so I did all that. I did that with a telehealth appointment with my local GP and I rocked up and prof Fusik, who is this incredibly tall man, he's very lovely. He was saying to me, there's two trials that they're running, um, both for a similar type of drug, but two different companies. What I find interesting about this drug is that it's actually treating physiological aspects of the illness as opposed to alleviating symptoms.

SPEAKER_03 19:38

Right.

SPEAKER_02 19:39

So today, everything else is a symptom reliever. This one, we so I might have mentioned in previous podcasts that there's a uh TED talk that I watched that was University of Saskatchewan, like medical professor, and he was talking about how in people with MS and ALS, and there are similarities in the crossover, um, the geographical distribution in America at least is the same for both illnesses. So there is something in that. Um, and in our neurons, we have a protein that leaves the nucleus and starts floating around in the cell, and it starts to form clumps, and that is pretty much at the top of the cascade that leads to neuron death. So there's, I think it's an Australian, American, and Chinese consortium that have developed this. It's a nanodrug, so it crosses over into the blood-brain barrier, and it is I want to name the, it's got a number at the moment, doesn't have an actual name. Cinetech is the company that's produced it. And anyway, what it does is that it deactivates the protein and the body moves the protein out of the neuron. So they're looking at this for treatment with a range of neurological conditions. ALS is at the top of the tree, um, and peripheral neuropathy from cancer. So you and I have talked about this because I remember we were talking about um diabetic neuropathies and things like that as well. So I got told um on Wednesday that I'm in. So I'm in. Yeah, I know. Happy fingers, happy hands. So, yeah, and that's pretty exciting. I'm looking forward to that. I threw my hat in the ring for one at Macquarie, which I'll have to cancel now because I thought if I don't get into either of these ones, um, and Prof. said to me, Goes, you want to get into this one because it it's just a daily tablet, and we won't make you do spinal punctures because these companies will put forward what they need in the trial to validate their evidence. So this one, I don't I have to do another EMG. So an EMG is what diagnoses ALS. When I had my first EMG, I was like, I just want to get through it. And I was like, I want the diagnosis so we can get going. It's a needle that is a very fine needle, probably like a lot stronger than an acupuncture needle, but it's about probably eight centimeters long, and they plunge it into your muscle and they ask you to flex against it, and they measure the activity in the muscle. It's hideous. So I've got to do one of them. Um, and then the rest of it's all like they want to do bloods before and after the first dose and things like that. And you know, if I turn into a werewolf, I'll probably we won't know, it'll be no change.

SPEAKER_03 22:48

So profusic. I'm presuming this is an Australian shortening of Professor Yusik.

SPEAKER_00 22:58

Yeah, yeah.

SPEAKER_03 22:59

Right. Because you go in profusic, and I'm like, Profusor.

SPEAKER_02 23:03

Now I'm jamming my words together. I'm maybe I should be French. My god, trying to understand if I start speaking French was hard. It was really hard.

SPEAKER_03 23:11

He was speaking French.

SPEAKER_02 23:13

I I've been studying French for four years now.

SPEAKER_03 23:17

I didn't know that.

SPEAKER_02 23:18

Yeah, I have. Wow. Yeah, I could give him directions over to the hospital and back in French. What? Yeah, yeah. Tene d'ort, uh butche, the fresh, tene uh but it was fun.

SPEAKER_03 23:34

Stop speaking that mucky foreign language and don't like it.

SPEAKER_01 23:38

I know, I know. Someone from National come in, you know.

SPEAKER_03 23:47

Maybe not a swatch sticker. Hang on, the French were Nazi.

SPEAKER_02 23:51

There was, there was. Um they fell early, they fell very early, and also um what they don't talk about the we had French woofers here, and they said what the French don't like to talk about is just how many people were quite happy for the Nazi Party to come into France as well at the time.

SPEAKER_03 24:09

Anyhow, moving including Coco Chanel.

SPEAKER_02 24:14

Was she? She was a sympathizer.

SPEAKER_03 24:16

Uh she was a lover of uh uh Nazi commandant.

SPEAKER_02 24:23

Hey, yeah, yeah. Yeah, gosh, she couldn't say she was attracted by the uniform, could she? Why wasn't that he were? I'm assuming he would have been in uniform.

SPEAKER_03 24:35

She wasn't it designed by Hugo Boss.

SPEAKER_02 24:39

Was it?

SPEAKER_00 24:40

Yeah, man, you know, since just some little things.

SPEAKER_03 24:43

I only know some little things, and they only pop out when they are a hundred percent activated, and then they go away, and I have no memory of them for years.

SPEAKER_02 24:53

They come out at critical moments. I'm impressed. So, so um back to this drug. So it's um some one, I think, is the protein. Anyone listening to this, please take this with a grain of salt because I'm liable to have got it back the front. But if you put this protein, it goes out of your body. But one of the amazing things that they've found is that you they're they're getting um dendritic growth on the ends of the axons.

SPEAKER_03 25:22

And what does that even mean?

SPEAKER_02 25:24

So that you're getting nerves not only recover, but you're getting regrowth. Um, a lot of us out there have thought once a neuron's dead, you know, that's it, and because it's your central nervous system, but we know that's not true. Wow. And we also hang hang on.

SPEAKER_03 25:43

So neural pathways are being re-established. Oh, how exciting.

SPEAKER_01 25:52

Oh ho, it's magic.

SPEAKER_02 25:56

So yeah, I hope it works, huh? So I'm on it for six months. Yeah, on it for six months, and um, yeah, I'll be I'll be out. Yeah, thanks. Porsche's crossing fingers. So um, yeah, we'll we'll go to a we'll go to a dance party and bounce around the room.

SPEAKER_03 26:15

Well, the one good thing about neuropathy, I will tell you, is that a bottle of soju jumped out of the fridge last night and landed on my toe. And while I knew it was hurting, it wasn't the same pain it would have been. And I woke up this morning with blood all around my um dried blood all around my nail. So this is one of the positive. Pardon?

SPEAKER_01 26:42

Oh, you gave it a real wet.

SPEAKER_03 26:44

It jumped from from the fridge.

SPEAKER_01 26:46

Are you gonna lose the net?

SPEAKER_03 26:48

I have no idea. I just saw blood and was like, well, I've seen enough of that. Thanks. The annoying thing is I was going for a pedicure today and now I can't. Oh like you think you've got problems, Lisa.

SPEAKER_02 27:00

First of all, problems, Lisa. So so um what what was the question? It was apathy, wasn't it?

SPEAKER_03 27:08

No, hang on, hold on. I've put it down because I thought that we had hit it. Hang on, here we go. The question was why is it coming up? Up you come sissy. Up you come sissy poo. Where are you?

SPEAKER_02 27:26

So I was gonna have a bit of a whinge.

SPEAKER_03 27:30

Um hold hold caller. You talked about providers leading with why we can't.

SPEAKER_02 27:38

Yeah, yeah, why we can't.

SPEAKER_03 27:39

And what is it you can't face?

SPEAKER_02 27:42

I what can I face? I got stood up by two ancillary workers this week. Both times. Yeah, both times it was an appointment requiring me to drive to Wollongong the first time on Matt's birthday, and the other one was today, where I drove with well, Matt drove me down to Shell Harbor. Now, I need to point out that I've just finished two weeks of infusions that require me to drive all over the freaking world, which is fine. I get that, I can accept that. But I drove down and I didn't even really want to go to this appointment. It was for like I've just had the OT do a big assessment in the house, and she wanted to meet us so that we could go look at um just equipment, things like chairs that are easier to get into at the dining table. Um, uh, they want me to look at a more robust wheelchair for around the property because the one I've got does it goes all over the place. But if I wanted to really, you know, go over gutters and logs and stuff, I'd probably need something a bit bit more flashy. Um, and I was just like, oh, it's such a beautiful day. We could go for a swim or we could go have lunch down near the water or something. So we turn up and Mark is going through, you know, seven layers of hell about it, but he forgot to put the brake on the wheelchair. So when I went to sit in it, it went flying backwards. Um okay. Um I think when you talk to people with ALS, falling is really scary. It's not just that you trip and you land on the ground, but your arms don't put out to support you anymore. All the things that your body would normally do when you fall just don't happen. You just go splat. Um, and so it's scary. You get very, very frightened of falling. Um, way more than you would expect someone to be.

SPEAKER_03 29:54

Like for me, I think I think that would be terrifying.

SPEAKER_02 29:57

Yeah, it was. It was, and it was I felt nauseous for the next 10 minutes. Um and what happened was that the foot rest was out and I fell onto that, so I didn't go whack onto the ground.

SPEAKER_03 30:11

Oh, that's good news.

SPEAKER_02 30:12

Yeah, so the front wheels have suspension, so I hit it and it kind of bounced, but I could have fractured my cocksicks or something, and Mark Mark's horrified, and he I know, and it oh, I did it wrong. Um and and I don't view it as right or wrong. It's just like shit happens, Porsche, you know. I know how I feel, but I think maybe it's a guy thing, they've got to allocate blame and responsibility.

SPEAKER_03 30:40

No, it's just a human thing. It's a it's a human thing, yeah. Maybe we all do it, we can't help it. It's who it's what humans are built like, especially when it's especially when it's something that we have forgotten to do that we know is important, yeah, yeah. He's allowed to feel shit. Like I know you're terrified and it's awful and everything. Yeah we'll give him a little grace, eh?

SPEAKER_02 31:07

And so, yeah, oh god, yeah. But so we got into this shop, this jam-packed with things that just remind you that your life is very different. And I was a little bit sort of stony because I was just like, oh man, I just really would have liked to have done 15 other things and do this shopping exercise. And I got asked about 15 times by very well-meaning shop staff, because I'm in a wheelchair, oh, what can we get? What do you need? Because they think, and I'm gonna sound absolutely nasty, but they were very nice people, but they know that I'm probably coming in with the best part of you know,$25,000 of NDIS money.

SPEAKER_03 31:49

Wow.

SPEAKER_02 31:50

Yeah, so they want to help. And and when I said to her that I was funded, my my my um NDIS sort of case manager was at MD New South Wales. The look in her face was like, oh, like, and and it was like why, why? Because because I've got MND. Nobody wants to have fucking MND, do they? ALS MND. Yeah, right. Yeah, and and I just was like, oh, and then she sort of started talking at me a bit, and all I and in the end we rang the OT and the OT had fucked up and thought she was meeting us at 2 30, and it wasn't. We had it down at noon. Mark double checked it. If I write down a time wrong, it's usually me. If Mark does it, he's usually spot on, and and it just gives me the shits because I could have been sitting out the back, you know, enjoying a sunny day. You could have been anything, I could have been doing anything other than that, and so I went to a bit of a dark hole, and I went in, so they they have these socks, they're like toddler socks for adults. So if you want to shlub about the house with non-slip socks, you can buy them. And she said, Is there anything else you need? And so I grabbed some, yeah.

SPEAKER_03 33:15

No, no, you go and we'll talk about toddler socks in a minute.

SPEAKER_02 33:18

And I just wanted anklet ones, and both she and Mark started talking at me about how I needed the ones that come up past my ankles because it's winter and it's getting cold and you'll be warmer. And by that stage, I was just like, you can all go get fucked. You're talking at me, I haven't had a lobotomy. I quite like anklets.

SPEAKER_01 33:42

And I just I don't know, I was just jack of it. I was really fair enough. Yeah. And so poor old Mark and I had a meaningful discussion on the way home.

SPEAKER_03 33:59

He's so lucky that you can converse your way through this instead of just biting his head off and shitting down his throat.

SPEAKER_02 34:09

Uh yeah, I I still have the odd moment where I do that. But but you know what it is? He wants to help. I mean he wants to help more than anything in this world, he wants to help. And for me, there's things I can still manage on my own. And I don't know that I'd want to be there with someone who is going through what is a progressive neurological condition. Because what I could do a week ago may not be what I can do today. What I can do tomorrow might be better than today. Um, but yeah, I think when he wants to fix stuff for me, I think that is often difficult for me.

SPEAKER_03 34:54

So that's also human.

SPEAKER_01 34:58

Yeah.

SPEAKER_03 34:59

Everybody wants to clear. Well, not everybody. Caring people want to clear all the obstacles.

SPEAKER_02 35:08

Yeah, they do.

SPEAKER_03 35:10

Whether you've got an illness or not.

SPEAKER_02 35:12

Yeah, yeah.

SPEAKER_03 35:13

It's just annoying to you now. Because yeah.

SPEAKER_02 35:18

It's it's just that you don't know, and and I guess for the first time I said to him, what's gonna happen when I can't even talk? If that happens. And I said, What is what's gonna happen when I I said you're just gonna have to listen really carefully to what I'm saying to you, because well, not only did we get in the car and leave eventually, and he was feeling really bad about what had happened, and it was very very, very scary. And then the IT didn't turn up. So again, it's another day where I don't get to see my grandkids, I don't get to hang out with my dogs. I a million things that I'd rather be doing than sort of ticking off things on a list that remind me that I need help.

SPEAKER_01 36:08

But but but hang on, I know it's gonna pick butt. Yeah.

SPEAKER_03 36:15

Or all of that is fucked, yeah. But you did get to spend time with the man that you love and who loves the shit out of you, and you even got to have an argument.

SPEAKER_01 36:29

We hate arguing.

SPEAKER_03 36:31

No, but you got to life together, yeah.

SPEAKER_02 36:34

We got to life together. I'd rather be doing other things in my life together with stop being an ungrateful bitch just for one minute. Stop being ungrateful, just be glad, just be glad. Oh my god. I um I also you know, I have to point out that the person that stood me up on Monday, his wife, his wife had her baby like two weeks early, and that's why they weren't there in the office. Oh, so it wasn't stupidity, it was well we it was Mark's birthday, so I wanted to take him out for lunch. And um and when we got there, they said, Oh, there's another person that can, you know, do the test. Because I I do have to have my breathing monitored now.

SPEAKER_03 37:27

Sure you do.

SPEAKER_02 37:28

Yeah, and and I was like, okay, well, I've been doing this EMST training for five weeks. My slow volume capacity is actually increased, which is a good sign, and that's sitting around 90%. Yeah. Last time I had it checked, it went from 90 to 93, but it's the forced volume capacity that these guys want to know about, and it has had a bit of a dip, so that means that it could mean that my diaphragm and rib muscles aren't behaving as strongly as they could. Sure. So, so these are things that I've got to find out, and and I was like, I could have gone up and seen my daughter and the granddaughters, and here I am getting stood up, and then we sat around for about 20 minutes while they tried to find the other person that could do the test, and then she couldn't be found, so we got in the car and I took Mark to this place for lunch that we both read, and and while we were there, we got a call and I missed the call, and she was like, Oh, you can come back now. I'm like, No, I can't. Like when I saw it, I thought I can't come back now. But I'm glad I did five weeks of respiratory training so I could get stood up and then nobody could be found on the day. But anyway, so I I sound ungrateful, but I maybe I am, but it's my precious time.

SPEAKER_03 38:55

No, Lisa, like I was making fun, but I know, but but the fact is it is your precious time, and my time is fucking precious. I know. Well, yes, yeah, yes, it really is, but yeah, but it oh, I wanted to talk about those non-slip sock things, yeah. Okay, so you know at the$2 shop you can get them too every winter, every winter they have them, and they're really fluffy. And um, I buy them for my auntie who lives up in Cairns, even though it never gets cold there. She feels the cold. Oh she loves them and they're cheap as chips.

SPEAKER_02 39:37

So maybe I'll go out and get myself some fucking anklet ones.

SPEAKER_03 39:42

No, no, you need to buy the proper anklet ones, and then you can put the the fluffy ones over the top if you happen to be cold.

SPEAKER_02 39:50

If I have well, I live at Robertson, it was I think 13 degrees when we got in the car this morning.

SPEAKER_03 39:56

So shit of brick, sister.

SPEAKER_02 39:58

It's only autumn. I know, but even here in summer, by about 3:30, 4 in the afternoon, we're at nearly at 800 meters up here. Yeah. So it just gets cool very quick.

SPEAKER_03 40:11

And um and you're on a peak.

SPEAKER_02 40:14

Yeah, yeah. I think it's the second highest mountain in the highlands, Mount Harry. It's um the the gib is a little bit higher than us. Yeah, it's beautiful.

SPEAKER_03 40:24

That's nice. It is beautiful, it is beautiful, really, really gorgeous. Hey, how's your um your uh international intern?

SPEAKER_02 40:34

Oh, she's great.

SPEAKER_03 40:35

Can you send her my love, please? I liked her a lot.

SPEAKER_02 40:37

I like her a lot. She's a really cool chick. In fact, she's um, do you know? She knows how to drive um an earth-moving equipment sort of things like she's driven headers that harvest wheat. She can drive the bobcat. Like she's about 45 kilos and five foot tall. Like she's but she's gorgeous.

SPEAKER_03 41:00

Let's not forget gorgeous.

SPEAKER_02 41:01

She is. She's she's had a heart missed around a couple bit by some Australian boys. So I think they don't know what they're missing because who hasn't. Yeah, exactly. She's um leaving us in a couple of weeks and probably heading off to Bali. Ooh, lucky her. Yoga instructor teaching.

SPEAKER_03 41:22

Is she?

SPEAKER_02 41:23

Nice.

SPEAKER_03 41:24

Yeah, yeah, Lisa.

SPEAKER_02 41:25

Yeah, it's time.

SPEAKER_03 41:27

It's time. You need to go next door.

SPEAKER_02 41:29

Wow, off to do some tapping. Yeah, well, ALS um sucks, but who knows? Next time we catch up, I'll be able to say, Oh, I've got peripheral nerve stuff happening. I would love that.

SPEAKER_03 41:45

I would love that.

SPEAKER_02 41:46

Yeah, thank you, beautiful. I hope so too. I'm very grateful for the research that sounds like it's starting to happen into this illness. Yeah.

SPEAKER_03 41:56

I love you so much. To the moon and back, in fact.

SPEAKER_02 41:58

To the moon and back, in fact.

SPEAKER_03 42:00

Can you do me a favour, please?

SPEAKER_02 42:02

Yeah.

SPEAKER_03 42:02

Give that big sexy hunk of a husband of yours a big one from me.

SPEAKER_02 42:07

Yeah. All right. Love you, Mike. Bye.

SPEAKER_03 42:11

Love you, Princess. Talk soon, bye.

SPEAKER_02 42:14

And that was this week's episode of A List 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.