ALS - To The Moon and Back — Episode 15

This one kicks off like most of our chats do — a bit of banter, a few sideways comments about the state of the world, and then… we take a proper turn. I share some recent test results that honestly stopped me in my tracks, looking at mould exposure, toxins, and what might be going on behind the scenes with my health. It’s one of those moments where you start joining dots you didn’t even know were there, and go, “hang on… this could actually matter.” 

We get into the reality of what that looks like day to day — trying to manage a house that may or may not be working against you, the cost of it all (financial and otherwise), and how quickly things can spiral from “we’ll deal with that later” to “right, we probably should’ve dealt with that yesterday.” There’s a lot in here about learning as you go, making decisions without perfect information, and trying not to lose your sense of humour while doing it.

And don’t worry — it’s not all heavy. There’s plenty of laughs (including me apparently being “ground zero” for the apocalypse 🙄), plus one of Portia’s stories that is equal parts hilarious and completely outrageous. We also talk about disability, the strange things people say when they don’t quite know what to say, and those moments that just leave you thinking… what was that?

If you’ve ever wondered how we juggle the serious stuff without completely losing the plot — this episode is pretty much it. Real, a bit ridiculous, occasionally confronting, and still somehow hopeful.

Transcript

SPEAKER_04 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're 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 humour 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. Oh well, so um set up in our bedroom this morning, and I'm looking out at a beautiful view all the way up to Miragong.

SPEAKER_02 1:16

Oh wow, somebody cleared the air.

SPEAKER_04 1:20

Yeah, yeah, which we needed, didn't we? Sure. Smokey in Sydney, it really was.

SPEAKER_02 1:26

Yes, and it smelt like tires burning.

SPEAKER_04 1:30

Yuck. Yeah. Not as bad as it smells down at Geelong, I bet.

SPEAKER_02 1:36

I don't know.

SPEAKER_04 1:37

I I sorry, I was one of our two ore refineries caught on fire yesterday.

SPEAKER_02 1:43

Wow, that's exactly what we need.

SPEAKER_04 1:46

Exactly what we need. It's out, and apparently it was equipment malfunction.

SPEAKER_02 1:51

Well that's what you'd say, wouldn't you?

SPEAKER_04 1:54

Yeah, Max say the same thing. Bloody conspiracy theorists. I thought I was the one that was sucked in by that sort of stuff.

SPEAKER_02 2:02

I'm not sucked in by anything. I think that there is there would be a genu genuine um a genuine argument for it having been subject.

SPEAKER_04 2:15

It feels like a terrorist attack, doesn't it?

SPEAKER_02 2:19

Well everything feels like a terrorist attack right now.

SPEAKER_04 2:21

Yeah, just us my immune system, us my nervous system.

SPEAKER_02 2:26

Yes.

SPEAKER_04 2:27

Yeah, yeah. Hey, I have got cool news. So um about a month ago now, I did a P test to test my Is that when you do weewee's? Yeah, you do a wee into a jar and then we ship it all the way to the US.

SPEAKER_03 2:47

Yep.

SPEAKER_04 2:47

My nutritionist wanted me to do a thing called an organic acids test. And because ALS is a mitochondrial illness, that we know that it's a problem with misfolding of proteins and blah blah blah blah, but we we know it's a lot of stress on the mitochondria. Yep. So where the energy for our bodies gets produced is in the mitochondria. By testing the organic acids that they pick up in this test, they can see what part of the energy cycle you have issues going on in as well. Well, yeah, really cool stuff. And anyway, so I did it, but as I was filling out the paperwork, I could do what's called a mycotox screening. So that tests for a whole range of molds that you might have been exposed to. Yes. And um, just so I've got this right, mycophenolic acid with me was something like 10 times the normal level.

SPEAKER_00 3:57

Wow.

SPEAKER_04 3:58

Yeah, that is actually given to people who have had organ transplants to suppress rejection. So it's it's an immune suppressor. What? Yeah, I know. Shut the front door, right?

SPEAKER_02 4:12

It's just whoo the other hang on, your body is making this.

SPEAKER_04 4:18

No, I have been exposed to it and it's looking like the house could be the issue, right? Yeah. Interestingly enough, the other one, which is called ocrotocin A, is one of the most um nasty byproducts of aspergillus. Well, aspergillus, you know, have you ever heard people getting like lung infections from being exposed to pigeon poo or moldy wheat? Mark's dad had a condition called aspergillus.

SPEAKER_02 4:54

Like uh like when you get it from the uh bort uh uh bort um oh sorry, the dementia's kicked in today.

SPEAKER_04 5:06

Um it turns on a lot of things.

SPEAKER_02 5:10

The bort uh soil, yes, yeah, yeah.

SPEAKER_04 5:15

So um it's found in fodder. The scary part about that is that when you eat meat from animals who have been grain fed, another reason to not eat grain-fed meat because it's not only a horrible way of existence, but these molds go into the meat, and you can be absorbing these things into your body from eating the meat. Um, it's not an easy one to get rid of, but um I had I think the top level in that one. Let me just flick over because I want to get this right. Because this is serious stuff, you know, like um so acrocin A, a normal range is less than 7.5. I was 59.69.

SPEAKER_02 6:06

Oh, you're always an overachiever, Lisa.

SPEAKER_04 6:08

I know, I know, punching above my way. Mycophenolic acid or MPA, 37.4. Mine was 360.08. Oh my goodness, yeah, yeah, I know, right? Uh you know those ants in the Amazon that some mold gets into their brain and starts taking over their thoughts and making them like do the will of the mold, not haven't you heard about that?

SPEAKER_00 6:42

No, but there's a show on on HBO called The Last of Us.

SPEAKER_04 6:46

The Last of Us.

SPEAKER_00 6:47

It's a it's a zombie video based on exactly that.

SPEAKER_04 6:51

Okay, so it's not so um Mark's sort of making a reference to zombieism, if that is a word where something takes over you. And um God, Lisa, you're pre-zombie. Yeah, but um it's not the apocalypse. Uh I always was a ground zero, wasn't I?

SPEAKER_00 7:10

You'll have that soul because you'll be a surviving zombie.

SPEAKER_04 7:13

Oh my god. So, but the ocritosin A, if you go onto PubMed, which is um where a lot of journals are published around the world, um nothing is validated anymore because of Trump. Um, he pulled the funding. Um but they have actually directly linked ocritos and A to ALS.

SPEAKER_03 7:38

Oh I know.

SPEAKER_04 7:40

Yeah, I know, right?

SPEAKER_02 7:41

It's so then then my question is if you get rid of the ocrytocin A, do you get rid of the ALS?

SPEAKER_04 7:50

I would love to say yes to that, but I truly don't know. Okay. But um there's a woman, so you know, I um I I follow a group called Healing ALS, and in it there's a woman, Heather. She has never had ALS, but her and her family were really heavily um burdened by mould in a house that they lived in. Um, they had to spend some huge amount of money remediating the dare problems in the house, and she is a really amazing source of information. If anybody out there is living in a mody house and doesn't feel well, you can actually test the house fairly easily. There's a thing called a hurts me test. I think it's about, I think ours is about 160 bucks here. Um, we're about to do ours. We we actually bought the kit and then sat around going, oh, we should get on to that because we really thought we'd address the mould and then we got my test result back. Um so it's called a hurts me test. It tests for a very large range of moulds that people are commonly exposed to. You don't wipe it over the dustiest parts of the house, it's just like a swifter cloth that you put on, say, your bedside table or the kitchen table, kitchen bench, places like that, and then you pop it in a ziplop bag, send it off, they will culture what is there, and they'll come back saying this is what the deal is. So Heather, over a period of like 18 months, her Hertz Me Test was sitting up around 30, her house got down to zero. They say if you can get it down to 11 to 15, you're doing well. If you get it below that, you're doing very well. Well, she got hers down to zero. Wow, I know. Amazing. What did she do? There's a lot you can do. You can um, like one of the problems, a lot of people use bleach, and it doesn't work because you're literally only wiping it off the surface. These things can be embedded in the studs in your walls and things like that. So um there's a there's an air filter. Um, you can keep the humidity in your house below 50. So we can't do that in our big open plan house, but we run air filters in the bedroom, um, the main living area that are HEPA filters. We're about to go with this one called a high tech because that's like 1500 square feet, and it is amazing. It's got blue light in it, which will kill a lot of mold. It's got one filter, and then it's got an even better filter at the back. Um, it looks very industrial looking, but it's really highly recommended. So we've just um put in an order to get one of those. Um, it's not cheap, this stuff, you know. I just um like we have a dehumidifier in the room and it's set to 45%. So when we leave for the day, we literally click that on. Now I've got to say we live in Robertson, but even on which is four meters of rainfall here a year, but um even on a fairly dry day, so like yesterday, um, we had it on, and just looking at it now, two litres of water would be in it.

SPEAKER_02 11:27

Well, and then what do you do with that water?

SPEAKER_04 11:29

Pour it down the sink. Okay. Get rid of it. Okay, yeah. So um sorry about the garden or no, no, oh, we could, I guess, but um that other one, the mycophenolic acid, you find that a lot in potting mix as well. Right, yeah. So um my doctor said I think you need to remove all your pot plants out of the house. So the lovely Anthea Da Silva slips into our weekly conversation again.

SPEAKER_02 11:59

Yes, the artist, Anthea Da Silva.

SPEAKER_04 12:01

The artist Anthea Da Silva. All my plants have gone to live at her house. Oh and um I have a question.

SPEAKER_02 12:09

Yeah, what if you put little stones on top of your soil?

SPEAKER_04 12:13

So have you seen that the oh you mean just like river pebbles or something?

SPEAKER_02 12:20

No, the tiny little stones. So so we were taught um God a thousand years ago that if you put those tiny little stones on top of the soil of your pot plants, that those flies and things can't get in and breed and put their things in it.

SPEAKER_04 12:36

Yeah, yeah, it's but it's amazing what these molds are in, like um coffee, coffee grounds.

SPEAKER_02 12:43

Don't don't even.

SPEAKER_04 12:45

I know, I know.

SPEAKER_02 12:46

Nope, I'd rather have dementia. You wouldn't want to have ALS. Got it. No, look, I wouldn't want to have ALS, but I wouldn't want to live without coffee either.

SPEAKER_04 12:57

And so while we're talking about this, yes, we've also got to punctuate this that my genetics has meant I do not process these things out particularly well.

SPEAKER_02 13:12

Yep.

SPEAKER_04 13:12

So this isn't to say that every single person who turns up with this in their house is going to be getting sick. Sure. However, um we like we we're thinking Mark needs to get tested now. Um things like imagine if kissing Mark gave you breathing the air in this bloody house, dude. But you know, I've got these little veggie beds outside my bedroom window where we've been sprouting seedlings all summer, and I said to Mark, we sit here with a breeze blowing and these tubs of potting mix. Yeah, yeah, I know, right? It's it's wild, it's absolutely bloody wild.

SPEAKER_02 14:00

So, but also Lisa, this is not your first old house.

SPEAKER_04 14:05

No, and I need to stress, we built a house at Stanwell Tops. One of the reasons we ultimately sold that house, it was built in 1999 when every tradie that could actually, you know, do the job was out at Homebush building the Olympic. Right. So the people we had building our house were sort of um stressed to the gills because they couldn't get good tradies. They got a brickie in and I went around there and I said, there's water sitting in pools under this site. We need to do like a herringbone drainage pattern, which is what I was looking up at the time. And the best advice was um a family member worked um as a building, like a building approval person. What do you call them? That's my moment, yeah. And that's what they recommended. Um, if we went away for a weekend and came home, we had this beautiful timber dining table, there'd be mold growing on it. And yeah, and this is a brand new house. It doesn't have to be an old house, it's actually a really badly built house. And when we when we ultimately sold that house, that was one of the major factors. We had to install fans under the floor and put more holes in the bricks just to stop the mould. But Mark reminded me only yesterday that our bedroom, we had drainage from the upstairs bathroom go down through the wardrobe, like it was all boxed in, and we had this horrendous mould problem. These don't have to be things that have happened in the last five minutes, given my genetics. Um, I think the house at St. Peter's, when we first moved into it, we had to do damp coursing and the Gumby next door, and I'm quite happy to say that out loud. Like honestly, he was the biggest moron. They were selling that house and nobody was living in it. And the owner turned up one day and I was chatting away to her, and I walked around to the back and they had those old hot water systems, you know, the big yeah. We've got one of those here for this apartment block. Yeah, yeah. So the pipe coming out of that had a tap on it. Now, have you ever ever seen a tap coming out of a hot water service? No, but what it was is that they'd installed that as a cheap fix because they had a leak in the hot water system under the floor somewhere, and they decided to sell, and for whatever reasons, they decided to sell. But what it meant, these morons who bought the house moved in and just turned it on. They didn't even get a building inspection. Like, who buys a hundred-year-old house in Sydney without getting a building inspection, right?

SPEAKER_02 17:05

Lisa.

SPEAKER_04 17:05

Oh my god, don't do it, people. Spend the money. Anyhow, so um off my high horse. So we ended up the floorboards in our house were okay. Actually, they weren't. The owner had ripped the floor up in our house and poured concrete before we bought it. So drainage issue there right away because there'd be no damp course or anything, I'm sure. And so we ended up putting this waterproof membrane down, but the skirting boards along the wall that we shared with the terrace next door literally fell apart with rot. Like the only thing holding them together was like the lead paint, which is the other toxic and the asbestos to feed that. Oh my god. So we did have to be injecting the walls with this silicon, and that stopped it. But I've had mold exposure, yeah. Like it's yeah. Oh I know, right. What are you gonna do? So we had a ventilation expert come out yesterday, one of the nurses over at Barrel Community Health recommended them because she's got a house that they treated. Yep, she said it's helped a lot. But at the same time, she said if she locks the house up and turns everything off, she still gets a moldy smell. So I know, I know, right? Um, so the other thing is is we've got a building biologist coming in two weeks' time. That's the earliest they can come. Um, and the woman who did the ventilation check yesterday um is in collaboration with this woman who's coming down and will do the building biology sort of exam. My guess is the outer wall of the bedroom here will need to be ripped off and redone.

SPEAKER_02 19:09

Okay. Um, but I have a question then. What do you do about what's happening inside your body?

SPEAKER_04 19:17

So um there's lots you can do. Um they say it'll be in your sinuses as well. Right. Yeah, because that's what you've been breathing in. Funnily enough, I've been saying to Jackson, who I see weekly, um, who's done all the DNA testing and things like that with me, um, and who also ordered the mycotox screening, um, I said my nose gets really blocked, and like I feel like my body's better than it was, but I was saying, I just don't feel like I'm getting ahead, and my my nose is I don't have a cold, I don't have a nose infection, but the snot is really not great. So um just like you do with your mouth, a couple of drops of iodine and salty water is a great mouthwash. I don't know that yeah, yeah, it's um it's good. So I'm doing like nasal rinses, which is never fun.

SPEAKER_02 20:23

You and Courtney act, yeah. She's a grand proponent of nasal rinses.

SPEAKER_04 20:29

Yeah, I'm with Courtney. Yeah, I think it makes a big difference. Um, and there's things you can do, you can take binders. I think you've got to be really careful, and again, this is just what I'm reading. I'm not a doctor, I don't want to be telling people what to do. But but um activated charcoal is one you can take if you're on any medication, you've got to leave about two hours before, otherwise, it'll bind with that kind of stuff.

SPEAKER_01 21:03

Um yeah, yeah, yeah.

SPEAKER_04 21:07

There's things you can do, like food-wise, and that's what I love about the nutritionist. We see she actually said there's foods that you can be eating. Um, conjac noodles, believe it or not. Celia us, Corilla. What noodles? Conjac noodles. Have you have you ever had friends that are doing like the full keto and they have these noodles? I think they taste feral, but they're a noodle and it's from some plant. It's an Asian thing, um like Southeast Asia, and it's um and it's sort of like a keto alternative to um well, I'm sure they didn't think it was keto, it was just a food. Um, but yeah, you can buy it and um mops it all up and it binds with these um these fungi.

SPEAKER_02 22:00

They like spaghetti noodles?

SPEAKER_04 22:02

Yeah, they look like a spaghetti noodle, but they almost look like an udon noodle in a packet when you buy them. They don't come dehydrated, they come sort of yeah.

SPEAKER_02 22:12

Yeah. Um yeah, there it there's lots of poverty and regret.

SPEAKER_04 22:17

Yeah. Oh dear. Um, so we have air filters going. One of the interesting things about oxytocin A, it likes to move itself about by attaching itself to dust. Right. So if you're a neat freak, you're doing yourself a big, big favor.

SPEAKER_02 22:37

Oh my god, this house.

SPEAKER_04 22:42

We pulled all the carpet out of this house about oh, a year and a half after we moved in, and it was a big expense that we weren't really up for at the time, but I'm really glad we did. Um why because you think about like it's damp, it mold dust gets into the carpet, and you're walking around on it. Like our dogs, we have three dogs that come in and out of the house ten times a day. Um I have noticed that we went out to Uluru and then to parks last weekend.

SPEAKER_03 23:19

Yeah.

SPEAKER_04 23:20

And um, I definitely think I feel a little bit better in those drier environments. Right, yeah, which I'm guessing is because there's less mold. Sure. So I could just move to Uluru.

SPEAKER_02 23:33

Oh my god. You know that Alice Spring is the only place I've been beaten up by more than one person. Basically, a whole nightclub came and jumped me.

SPEAKER_04 23:44

Seriously. Seriously. All right, I have two questions. You need to tell me that story, and then you need to tell me how Lappington went.

SPEAKER_02 23:53

Oh, okay. That story is pretty easy. We were out there doing a Priscilla gig.

SPEAKER_04 23:57

Yeah.

SPEAKER_02 23:58

Uh, I was out with two of the trans girls on our night off, and we went to the club, and uh, I wasn't in drag, they were themselves. Yeah, and one of the boys came up and put his arm around me and was talking. And he's like, Do you want to go outside? And I'm like, you know what? I'm here with my friends, I don't want to go outside. He was saying, Let's go outside so he could beat the shit out of me. Anyway, I turned to one of the girls, and um, as I was turning back to him, he punched me in the head and down I went. And the two trans girls I with was with who I am forever grateful to. Yeah, they were fighters.

SPEAKER_04 24:40

Well, they've learned how to fight because they've had to, probably.

SPEAKER_02 24:43

Rika Paris, Christy McNichol were picking boys up, running their high heels down their legs and throwing them off. Like anyway, we went to the police station and my face was all just black and so sorry. Because we got kicked out, not them.

SPEAKER_04 25:02

Oh, of course not, yeah. You're the blow-ins.

SPEAKER_02 25:05

Yeah, we went to the police station and the police looked me dead in the face, and one of them said, Well, what did you expect?

SPEAKER_04 25:14

I have no words for that.

SPEAKER_02 25:15

I know.

SPEAKER_04 25:17

And the girls were like I expected to be able to be safe in a public place as the person I am.

SPEAKER_02 25:23

Sure. And I said, Um, those guys were definitely friends with the people working there. There must be some video of that. And they're like, Oh now, that stuff never that that's just in TV shows. And you know, if you if you pursue this, you're gonna have to come back out to Alice Springs to fight. And I was like, Oh, yes, shouldn't you be on my side? They're like, Oh, there's nothing we can do.

SPEAKER_04 25:47

Oh, Porsche, that's horrendous.

SPEAKER_02 25:49

You know what? Because they were there, it was okay. The girls.

SPEAKER_04 25:54

I know, right? But that could have gone a very different way. And I'm having a bit of a thing at the moment with indifference. It's the indifference to what you experienced by the people who should be the most concerned about it.

SPEAKER_02 26:09

Yeah, welcome, welcome to that mindset. That's the world. Yeah.

SPEAKER_04 26:17

Indifference up. Yeah, yeah.

SPEAKER_02 26:22

They only have so much empathy to give, and it's not going to some poof who's been beaten up in a club.

SPEAKER_04 26:31

And that's sad.

SPEAKER_02 26:32

Sure, exactly.

SPEAKER_04 26:34

Some person who got beaten up in a club is how it should be. Of course.

SPEAKER_02 26:39

But yeah. Um, so the other thing was Leppington.

SPEAKER_03 26:46

Yeah.

SPEAKER_02 26:47

44 players. Yep. 44 players, I'm very happy.

SPEAKER_03 26:51

Woohoo!

SPEAKER_02 26:52

Uh 30 37 of those had come from Austral.

SPEAKER_04 27:00

I've got goosebumps, I love it.

SPEAKER_02 27:02

Which is great. So, and we still didn't have three of our regular teams come. Uh-huh. So I'm hoping they will jump on board this week or or very soon.

SPEAKER_04 27:17

Is bloody brilliant.

SPEAKER_02 27:19

So we quadrupled the amount of people that were in that venue over the night.

SPEAKER_03 27:24

Yeah, yeah.

SPEAKER_02 27:25

Everybody drank. Uh, and then the other ones were friends of mine who had made their way from different parts of Sydney to come and support it.

SPEAKER_04 27:33

Yeah, it was really so Leppington, and I'm I'm sorry, Sydney. I grew up in the Shire until I was 10, and then I moved to the Inner West. So Leppington.

SPEAKER_02 27:51

So she had to get a passport to go past. I don't know where I've gone out.

SPEAKER_04 27:56

I've gone out there a lot with dog stuff and horse stuff, but Leppington, like Londonderry, Leppington, or is it no Londonderry is on well look yes, but no.

SPEAKER_02 28:09

Londonderry is north, and I think Leppington is souther.

SPEAKER_04 28:14

So Austral, Levington, uh yeah, Austral and Leppington.

SPEAKER_02 28:18

So they're 10 minutes from each other on the way to Camden on Camden Valley Road.

SPEAKER_04 28:23

Oh that's an hour for us.

SPEAKER_02 28:27

That's almost what it is for me.

SPEAKER_04 28:31

Oh, I'm so happy for you.

SPEAKER_02 28:32

That's really good. So if you are filling up to it on a Sunday, Lisa, you are welcome to come.

SPEAKER_04 28:37

Yeah, I'd love to come. I have uh Mark and I have been talking a lot about the volume of appointments I go to. And yeah, and um how in a month's talk with this, you've got to get out. Um, my voice is starting to get a little bit affected.

SPEAKER_02 28:58

I can't tell talking to you.

SPEAKER_04 29:00

Thank you for saying that. At the end of the day, if I'm very tired, um, I can mush the ends of my words a little bit. Okay.

SPEAKER_02 29:10

Um I'm yeah, yeah, yeah.

SPEAKER_04 29:15

Um, that's not to say it's going to continue to the point where it's gone. Um, some people get to a point where, like I am now, there's one woman in um my healing ALS group. She's about six years in, and she got to like feeling croaky, and that's where it stopped. So yeah, yeah. So I I have um had a word with my ALS and said, you better not take my voice. Um I can I can live using a wheelchair quite comfortably. Losing my voice would really piss me off.

SPEAKER_02 29:53

Yes, and the ability to slap someone in the face. Come on, these are two very important things.

SPEAKER_04 29:58

Uh you should see the speed with which I can get that wheelchair going. Oh, sorry.

SPEAKER_02 30:09

You know I grew up with a wheelchair, right?

SPEAKER_00 30:11

I know, your dad. Yeah.

SPEAKER_02 30:14

So if someone was slow at the um at the supermarket or in a line, we would just ram them and they'd turn around to be angry and they'd be like, oh sorry, mate, sorry, mate, and they let they let him pass.

SPEAKER_04 30:28

Yeah, yeah. I um I had a few things that I thought in the wrap-up from the Uluru chat, and just some things that have happened because when I'm out in public, it's a wheelchair these days. Sure. And so I'm clearly, clearly a um uh a person with a disability. Um we I don't even know if I I'm pretty sure I didn't get to this one, but the apartments, Emu Walk apartments, yes, they need to put a f a gate in the balconies of their ground in their ground floor.

SPEAKER_02 31:03

Yeah, because there are those stairs.

SPEAKER_04 31:06

Yeah. And people often who have disabilities have very um very clear needs for a kitchen. Like I don't eat the way other people eat. Sure. If you're out there with ALS using a peg trip, you need a blender. Your food needs to get processed. So, anyway, that's just my five cents to them. And I've I'm I've got the survey and I'm gonna sit down and send it to them because they were great, they probably just aren't aware. But anyway, there was people scared to tell them. Oh, really?

SPEAKER_02 31:41

Yeah, of course they are. Yeah, most people who are disabled have been disabled from birth and don't want to take up space.

SPEAKER_04 31:50

Yep. That sucks.

SPEAKER_02 31:53

Yeah, but it's true.

SPEAKER_04 31:55

Yeah, probably.

SPEAKER_02 31:56

I think it's part of what my d made my dad such a fighter because he came to paraplegia when he was about 16 or 17 years old.

SPEAKER_04 32:06

I think about that, and you think what he would have gone over there believing, and what he came back with, and what he was able to do with his life. Yeah. What a guy. Amazing.

SPEAKER_02 32:18

Yeah, he was a hero. He was he was uh a roller coaster of a man, but in many ways he was a hero.

SPEAKER_04 32:24

Yeah. Who was probably offered alcohol instead of post-traumatic stress disorder counseling? Do you know that's all he did then, you know?

SPEAKER_02 32:35

Oh no, I understand that. Um, so he was lucky because we were in this section of West Pimble, and across the main road was an army section that had been that had been put aside for people who had come back.

SPEAKER_03 32:51

They had a cohort.

SPEAKER_02 32:54

They had a little cohort, like of all the army people, he had five or six mates, and they would come to our place on Saturday mornings, yeah. They would either go to the shed or they would sit on our veranda in the sun and um have a beer and and chat. We were not welcome to be a part of those chats.

SPEAKER_04 33:16

No, but they had to have wanted you to hear it.

SPEAKER_02 33:20

Well, I think they had to continually debrief.

SPEAKER_04 33:28

Yeah. I had this thing in the years after the car accident. Yes, probably like around the time I met you, I used to say to people, I feel like I've got this sort of Hans Christian Anderson curse on me of having to tell the story over and over and over again.

SPEAKER_02 33:50

The red shoes in story.

SPEAKER_04 33:52

Yeah, it was. I had to tell people the story, and I'd be sitting there and I'd go, I'd meet somebody, and I'd go, Oh, I'm not gonna tell the story of the car accident. Oh, we're in this car accident, blah, blah, blah. And about three or four years later, I realized I hadn't done it in a while, but it was a compulsive thing, right?

SPEAKER_02 34:15

So it defined you for a while.

SPEAKER_04 34:17

It defined me for a while, but I think part of the trauma of it was having to tell this is what happened to me, yeah, you know, and I I don't know why, but yeah, it was just how I dealt with it. Whereas Mark is much more stoic and just like, oh yeah, got his femur got broken into seven pieces in that accident, and then he shot off fatty embolisms and um yeah, and blood clots, and and he was like, Oh, yeah, yeah, but we're here.

SPEAKER_02 34:48

And and uh Well, that is true, it's toxic happiness.

SPEAKER_04 34:53

It it kind of is a little bit, and um, and if I was to say to him now, even with what's going on with me, that I think he should see a counsellor, he goes, I'm fine.

SPEAKER_02 35:06

And I do know what that is his choice to make.

SPEAKER_04 35:10

It is, and I've got to respect it. But I I know how fine I would be if he was going through this, I wouldn't be fine.

SPEAKER_02 35:20

You wouldn't well, he's not fine either, but yeah, you can't push him. Oh god, I know that one and I'm not a psychologist.

SPEAKER_04 35:35

So going back to the emu walk apartments, we're getting out of the chair. Yes, my walker was at the bottom of the steps, so we get there, Marco trot down the steps, bring the walker out, yes, and I would walk down the stairs holding onto the railing. This day we pull up, we've been for a swim in that gorgeous pool out there.

SPEAKER_02 35:55

You telling me about the woman.

SPEAKER_04 35:57

I am I did tell you about this last week. You had this really push, like Kimmel Packables kind of and the her husband and two boys sort of walked past and she stopped and she turned around and she said and she goes, You've got your work cut out for you. I admire you so much. About 40 times have turned around to each other every time you do something. I admire you so much.

SPEAKER_02 36:39

I admire you so much.

SPEAKER_04 36:44

I don't admire you, yeah. Um you know what though?

SPEAKER_02 36:50

Yeah, that is probably the nicest thing that she has ever done in her whole life.

SPEAKER_04 36:57

Yeah. You think?

SPEAKER_02 36:59

Which is why it felt so icky for you.

SPEAKER_04 37:03

It did feel icky, it felt really icky.

SPEAKER_02 37:06

And so can sorry, I have a little story I need to tell.

SPEAKER_04 37:10

Okay, okay.

SPEAKER_02 37:11

You know how I say nice things to people because if I see something about them that's nice, I want them to know that it's been noted.

SPEAKER_04 37:17

You're incredibly generous with how you do that with people.

SPEAKER_02 37:21

I just thanks. So Jin in the early times of our relationship thought he could do that. And he was studying, he was studying some short uh course that he had to do for his electrician thing. Yeah, and there was a woman in the room teaching, and he said a propose of nothing, you have lovely thighs.

SPEAKER_01 38:04

She didn't sound like what the fuck? Oh well, he's realized it hadn't landed. He had to go up to her and go, I'm so sorry. I know that was super quickly. But my husband always says these really nice things.

SPEAKER_04 38:35

That's uh that's the best. I love it. Oh my god. My other my other bit of um being noticed in a wheelchair happened at a dog agility trial in parts on the weekend.

SPEAKER_01 38:50

Oh yeah, that was so recent, yeah, yeah.

SPEAKER_04 38:53

Last weekend. So on the it was a two-day trial on the Saturday. A lot of people who haven't seen me in a long time were there, and there I am in a wheelchair.

SPEAKER_02 39:03

So it's new Lisa.

SPEAKER_04 39:05

New Lisa, they all know me from like canine ed and from going to trials. I stopped going to trials a lot a few years back. Um, I think the sport went through a bit of a culture thing that I wasn't loving, and um, and this trial had a beautiful atmosphere on the weekend. Well done, Parks um dog training club. I'm sure that's not your full name, but really good. They did a great job. Anyway, um, yeah, this woman came up to me and she's she's camped here, she's done long, long workshops that we've run here, and she said hello, told me I was looking tired, which I thought, she said, Are you tired? And I said, Yeah, I sometimes I get really tired, I feel buggered. I didn't feel awful like then, and she goes, Yeah, you're looking pretty tired. And she said, Have you had any episodes of choking yet? Oh my gosh, yes, and I I looked at when Mark's cocks in my mouth, and and she said, and I said, Oh, I've had a couple of things that might be, could be, but I'm not quite sure. So, you know, maybe one or two, but nothing terrible yet.

unknown 40:32

Yep.

SPEAKER_04 40:33

And um, so she obviously knows enough about M and D to know where it goes, right? And um, and then she said, Oh, I've got to duck off. She went and to run her dog or whatever she had to do. And so, anyway, I sort of sat with that and I thought, that was a weird ass conversation. Like, I don't like, did I ask her whether she had a bowel movement that morning or you know, you know how how could you not? Yeah, but to her credit, yes, this is where this it turns into a good story. I got home that night and I had a message from her through Facebook, and she said, I feel like a complete ass. I was so awkward and upset when I saw you that I didn't know what to say, and I felt awkward and stupid, and I was trying to connect with you, and I know we forget, don't we? We forget, we forget, and the courage to tell somebody that and I sat there and I got a bit teary and I showed Mark and I said, I don't even know how to reply to that because she's being incredibly generous, and then when I saw her the next morning, she saw me and I said, Hey, come over here, and we had a hug, then we had a chat. She said to me that she even had a moment where she didn't want to apologize because she thought that would make me obligated to forgive her or accept what she's doing.

SPEAKER_02 42:14

Right.

SPEAKER_04 42:15

So I thought, yeah, I know, right?

SPEAKER_02 42:18

Insight into we are a fucking mess on the inside of all of us.

SPEAKER_04 42:26

We are yeah, protons, neutrons, elections, electrons in case elections.

SPEAKER_02 42:33

Oh no, so I love that she was strong enough to do that for you and for herself.

SPEAKER_04 42:44

Yeah, and how honest she was, sure, and I really respect that. It was cool.

SPEAKER_02 42:51

Well, I also think that that is a really easy way to live your life, honestly and authentically.

SPEAKER_04 42:57

For sure, for sure. Yeah, I um I have a lot of respect for her to begin with, but I have more now. Fantastic. Yeah, yeah.

SPEAKER_02 43:07

So out of shitty things, good things can grow.

SPEAKER_04 43:12

It can, they can.

SPEAKER_02 43:14

You have now learned something something, sorry, I don't know where that K-frame came from. Something extraordinary about this person. Yeah, that when they put their foot in doo-doo, they bother to clean it up.

SPEAKER_04 43:28

And isn't that an amazing quality in a person? Sure. I hope she's listening right now because yeah, I hope she does listen. Um, one of her friends, Claire, um, listened. So I want to shout out to Claire. Claire is um a woman I know through the dog world, she has been diagnosed with FND. She could be a functional neurological disorder. They do not know what causes it, where it comes from. It's it can be progressive, it can fade away. One of the things that they were thinking with me to begin with, um, the GP that was locoming, she said to me in June last year, she goes, I don't know what's going on, Lisa. Fnd maybe. I wish it was FND, mate, because if FND, you can live a full life. Um, Claire would probably have different feedback for me on saying that. But yeah, but the first time um, the first time Claire talked to me about it, we were at a dog agility trial down at WAGA, and she said, Hey Lisa, look at this, and she stood still. And side on, she was literally TikToking backwards and forwards like a metronome. And I was just like, What on earth is that? And she said, Oh, my doctor thinks it's a migraine. I'm like, that's no migraine.

SPEAKER_03 44:58

Yep.

SPEAKER_04 44:59

And um, so it took, but when I was going through all the hoopla of getting diagnosed, um it was it was a bit hectic because um F and D would have been nice, but she said Claire said to me, she said, I've had to really push hard and go to a few different places. I was even thinking about going to see her neurologist in Canberra purely because they felt like they were finally getting somewhere. Um, but for her, I think, like me, a lot of us, like I've got a friend that I've met through my physio, um, B at Paralete Fitness at Norellan, really, really cool clinic, and um they have a lot of MS people go in there. Um, she's got MS heat and cold knock us about, so extreme heat, and I just my nervous system goes to spaghetti. I didn't know this. I didn't I learnt that in about mid-January when we had those 40-degree days. Um, it makes it makes the joints in my fingers swell. It um if I go to get up, I quite often find it very hard to walk full stop. Wow, yeah, it makes you very tired. Um, and extreme cold locks your muscles up. A lot of ALS people uh like that. Wow. MS people too. Um, but you know, I think I think it's an illness that you learn about as you go on. More and more I can see the similarities with ALS and MS in particular. Um and not everybody is presents in the same way.

SPEAKER_02 46:54

But ALS is the fast track version of MS, isn't it?

SPEAKER_04 46:58

Yeah, yeah, it is. It is. Um, the drug trial that I'm on, ultimately uh they're thinking long-term this drug would be an MS Parkinson's drug as well. I don't know what the distribu yeah, I don't know what the distribution for um for MS is in Australia. I know that globally it tends to be the temperate zones rather um rather than equatorial zones, and that's and again, that's just what I'm thinking. But ALS and MS have the same geographical distribution in the US. I've mentioned that in previous broadcasts, but in Australia, I don't know if that research has been done. I'm guessing it would be the same as well.

SPEAKER_02 47:52

But Australians move around much more than US people do, they do way more. We like like it's harder to get a grasp on territory here compared to America, where most of America lives within five kilometers of where they were born.

SPEAKER_04 48:13

Wow, yeah God. I just think if I was still living in the Shah, I think I'd go mad. Well, dumb very shy people, it's beautiful there, it's just not me.

SPEAKER_02 48:26

Well, I would put forward that you are mad, which is why we're friends.

SPEAKER_04 48:39

Madness is just a sharping of the senses, said Edgar Allan Poe.

SPEAKER_02 48:43

Well, how'd that how'd that go for him? The time is up. Already, it's just gone like that. And there's something you didn't there's something you didn't do for me this week. You didn't write me a new set of cards.

SPEAKER_04 49:08

I will.

SPEAKER_02 49:09

Yes, please. Yes, please. All right, even though we didn't need it today.

SPEAKER_04 49:15

We didn't, we didn't need it. I think I think Katrina needs to come back, but also Heather is gonna come on and talk about mold in a few weeks as well. Yay!

SPEAKER_02 49:26

Yay, we can call her that moldy old bitch, ladies and gentlemen. Please welcome Heather, the moldy old bitch.

SPEAKER_03 49:36

Oh, that's funny. That's funny.

SPEAKER_02 49:38

Lisa Wright.

SPEAKER_04 49:39

Yeah.

SPEAKER_02 49:40

I love you to the moon and back.

SPEAKER_04 49:42

Oh, Bosh, I love you to the moon and back too.

SPEAKER_02 49:45

I'm glad.

SPEAKER_04 49:45

So good to see you. I've been looking forward to catching up this week.

SPEAKER_02 49:48

Me too. Me too. I was like, hang on, we don't have a date. And now we had a date.

SPEAKER_04 49:54

We're off to the pool now for a swim. Oh, I have a lovely swim. I will. I will. Yeah. Love you back. Love you back. Bye. Bye, honey. How good was that? 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. We'll always be incredibly grateful. And we hope to see you next time around. Thanks again.