ALS - To The Moon and Back — Episode 14

This one starts exactly where you’d expect us to begin… microphones, crockery, and a bit of light chaos before we even get to ALS 😄 From there, we head straight into my trip to Uluru — which, honestly, turned into something far more meaningful than I expected. There’s airport moments (including a very honest rant about accessible toilets), unexpected kindness from strangers that absolutely undoes me, and a Qantas flight attendant who may or may not now be part of our extended podcast family. Also, turns out if you casually mention ALS mid-flight, you might end up with champagne and a personal concierge experience… not complaining. 

But the heart of this episode is what happened out at Uluru. The walk around the base, the “brain” formation, and a meditation that landed at exactly the right time — all of it coming together in this strange, powerful way. There’s something about that place that’s hard to explain, but you feel it. I talk about “leaving the bags behind” — the stuff you carry that you don’t need anymore — and having a moment to just sit in gratitude that I was even there, doing it. It’s a bit woo-woo, a bit grounded, and very real all at once. 

We also get into the bigger stuff — the reality of ALS in Australia, the gaps in support depending on your age, and how wildly unfair that can be. There’s a raw conversation around choice, dignity, and what the end of life can look like with this disease. But in true form, it’s not all heavy — there’s humour, honesty, and that constant thread of “keep making plans” running through it. Because at the end of the day, that’s what this is about — living, even when things are hard.

Transcript

SPEAKER_01 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. I was only listening to the latest podcast, and I think my microphone's not as good as your microphone.

SPEAKER_02 1:10

Well, that's because you told me off because my didn't have a microphone.

SPEAKER_01 1:14

And now you've got a really good one.

SPEAKER_02 1:16

So Jin CO, the love and light of my life, yeah, had this lying around the house because he used to use it for work when he was uh during COVID when he was here. Yeah, wow. I know he's good, right?

SPEAKER_00 1:32

He is good, he's very good. How are you?

SPEAKER_02 1:36

I am I'm happy and well. I'm in my favorite color. It's kind of English racing green, I think.

SPEAKER_01 1:45

Yeah, green. It kind of is, isn't it? Yeah, uh how are you? I'm really good. I'm really good. I um got back from Uluru on Monday night.

SPEAKER_02 1:58

Was it as amazing as you hoped?

SPEAKER_01 2:00

Yeah, it was really good. It was so good. Um, there were some weird ass things that happened on the way too that you just go, okay, this stuff you can't plan for it.

SPEAKER_02 2:12

So you better tell us what it is.

SPEAKER_01 2:15

Okay, so we get on the plane on Monday. And by the way, if you get um someone called Victor track you down through your perfume junkies site, he was the guy that checked us in at Qantas, and he smelt amazing. And I said, What are you wearing? And he rattled off what he was wearing, and um and I said, Well, you need to look up my friend Porsche Turbo's site, Australian junkies, and he goes, Oh wow! And I said, He's actually selling some of his perfume stuff.

SPEAKER_02 2:58

I'm having terrible trouble letting them go.

SPEAKER_01 3:01

Are you? Oh, I saw that teacup that you're sipping from. Okay, I stay corrected.

SPEAKER_02 3:15

It looks like an Easter egg, so it's the perfect gift for a diabetic.

SPEAKER_01 3:19

Oh, isn't that beautiful?

SPEAKER_02 3:21

What a lovely gift, Royal Albert, my love.

SPEAKER_01 3:25

Wow, very, very nice.

SPEAKER_02 3:27

If you look them up, they're reduced from$200 down to about 40 on some of the online discount sites.

SPEAKER_01 3:36

Amazing.

SPEAKER_02 3:36

I know.

SPEAKER_01 3:37

Are we just not loving that kind of thing anymore? What do you mean? Because we love it, like I love it, yeah. But I've got a full set of the most beautiful art deco, I think it's called Princess Marigold, yeah, and it was 1916 to 1926, and I used to collect it on eBay, yeah, uh, this would be 20 years ago, and I've got there used to be a guy down at Brighton the Sands who would always be trying to outbid me, and he would often win because I had two kids and you know, stuff and life. Um, and he lived in this house that was Art Deco built and everything, and it was Art Deco right down to his crockery. And the bastard beat me out on a coffee pot and a cake stand once, and then and then lo and behold, somewhere around 2010, he said, I'm over it, I'm selling the house, selling everything. Do you want it? I know, I know it was amazing. So um, next time you're over, we'll have to eat off it. But it is beautiful, and this is back in the days where they'd use real silver to paint the edges on and things like that.

SPEAKER_02 4:55

Hamble platinum, platinum, platinum, wow, it would have been platinum, not silver.

SPEAKER_01 5:01

Really? Oh my god, yeah, I'll have to show it because I if I like if we host Christmas, which we haven't done for two years, but if we host Christmas, we do the whole the whole thing, yeah.

SPEAKER_02 5:15

Well, I won't be there for that, but we will do something else. Um, yeah, yeah. Talking of crockery and completely off the trail of ALS.

SPEAKER_01 5:24

Yeah, yeah. Thank fuck.

SPEAKER_02 5:27

So daily our daily plates, etc., uh were my mum and dad's wedding crockery that that they got given. And I did the same thing. I went to eBay and I turned an eight seater and now it's a 20-seater. Uh, we have everything. We have the soup coupe, we have the we have teapots, coffee pots, uh, all the servings. Uh, and that's what we use every day, Royal Dalton.

SPEAKER_01 5:58

Beautiful, beautiful, yeah, really beautiful. Um, Mark's mum uses Narotaki.

SPEAKER_02 6:04

Very nice.

SPEAKER_01 6:05

Yeah, very, very nice. It's her favorite. Yeah, um, yeah. She's got uh, is it Clarice Cliff was the potter that used to do all those beautiful sort of like a soup terrain that looked like pumpkin? Oh, yeah, yeah, yeah, yeah, yeah.

SPEAKER_02 6:21

I've seen them, I've seen and cabbages and yeah, yeah, amazing stuff.

SPEAKER_01 6:27

I love that stuff, I think it's awesome. Huh.

SPEAKER_02 6:31

So you know what? That is for us. The modern people, I don't think most of the modern people have any interest in it.

SPEAKER_01 6:38

No, it's not a thing for them. No, um, which you know, I guess things move on, don't they? Things move on.

SPEAKER_02 6:46

Well, it's cyclic in 20 years, they're all going to be desperate for it.

SPEAKER_01 6:50

Yeah, probably. It's like all that 70s furniture that we had growing up is now really hip and groovy.

SPEAKER_02 6:57

So I have uh mum and dad's um buffet. Uh Parker especially made um Mum and Dad's Yeah, yeah, yeah. It was basically copied off the Eames works. So um because dad was in a wheelchair, he needed a very specific thing. So Parker made their buffet and uh wall units for them, especially yeah, and then special, yeah, and then later on, um Georgie Parker, daughter of Parker Furniture. Is she yes, and I used to teach drama school together uh at school holidays at Marion Street Theatre.

SPEAKER_01 7:46

Wow, I know you've lived many lives, my love. Yeah, funny, funny. I find out something new. Oh man, what she's doing these days, she did a lot of theater.

SPEAKER_02 7:59

I think she's still working, I think she'll work forever. She's so talented, yeah, and so lucky. Let's not forget and so lucky. She's been extremely fortunate. Hey, so we didn't get much of the um Ola Ru story. There's more. Come on, you got on the plane, you know.

SPEAKER_01 8:15

Right, so we get on the plane, right? And because I am traveling in a wheelchair, yeah, um, I get on first. And I just want to say to people who are using all access toilets, accessible toilets, when they're not in need of an accessible toilet, because my experience has been every single time when I've been in an airport and someone is using one, they walk out. Now, I'm not saying that every disability is not visible, but I strongly suspect people go, oh, I can't be bothered for whatever reason they want. Um, yeah, just don't go in there, people. Like I like that so that's the start of my journey, right? Happened at the beginning and end at Sydney Airport.

SPEAKER_02 9:09

Can I stop you? Uh lots of people with IBS, yeah, irritable bowels, yeah, they get a special card dispensation because they need to use the toilet immediately.

SPEAKER_01 9:22

Yeah, okay.

SPEAKER_02 9:23

So I'll and you can never tell.

SPEAKER_01 9:26

Yeah, so I'm just gonna put a caveat on what I'm saying.

SPEAKER_02 9:29

Yeah, but if you if you're not, don't.

SPEAKER_01 9:32

Yeah, if you're not, don't do it, people. I agree. Yeah, thank you. So, anyway, get down onto the plane. And this beautiful woman, a tall willowy woman called Katie, she comes up and she said, Well, I just have to chat to you about um you get your own personal safety rundown. And she was talking to me about it, and she said, But you would have heard this all before. And I said, Well, no, I actually have never traveled with the wheelchair before. And she looked at me and she said, Oh.

SPEAKER_02 10:08

Hang on, Lisa, you have frozen.

SPEAKER_01 10:11

Oh.

SPEAKER_02 10:11

Oh no, you're back. You're back, you're back.

SPEAKER_01 10:14

Okay, so where did we get up to? Katie.

SPEAKER_02 10:17

She said, You've heard all this before. You said I've never traveled in a wheelchair before.

SPEAKER_01 10:22

I've never traveled in a wheelchair before. Um, I've only been using it a few months now. Not even that, it's probably five weeks. And um, and she goes, Oh, and I and she said, Why? Why do you need the wheelchair? And I said, Well, I've been diagnosed with MND. And she looked at me and she went, Oh my goodness. She goes, I can't imagine what you're going through. Now, I've said this to you possibly before, it's the kindness of strangers that absolutely undoes me. And if it's if someone is talking to me like, oh my god, this sucks, I can joke along with it. But when I can see that I am stirring up emotional feelings in another person, it fucking unravels me. And so I got teary, she got teary, and anyway, not that I drink alcohol, but I got very, very good champagne the whole trip, and I was being treated like a princess the whole way. It gets as you should. Yeah, thank you. It gets even better. We get up to go to the bathroom. So Mark actually walks backwards up the center aisle to get me to the bathroom. And anyway, as when we're all heading back down again, she goes, you know, I've got a girlfriend, and she has a friend who's recently been diagnosed with MND, and she has a podcast. And yeah, there's shit. And she goes, and she goes, I've been trying to think where I know you from, and I think that's that's that's it. I think that is it. That is it, it's bloody it, so funny, and so so yeah, if we weren't special before, we were even more special afterwards, and oops, I know, I know, hilarious. And then before we knew it, she'd messaged like Katrina mid-air, and she was telling me how, oh yeah, Katrina was so chuffed to be on the podcast. And and I said, Well, we loved having her on, it was really and we seriously did, yeah, yeah. So, um, so Katrina's gonna come down here for a visit, and maybe you should come. And she's gonna bring her lovely flight attendant friend called Katie.

SPEAKER_02 12:43

Yeah, and sounds fantastic.

SPEAKER_01 12:46

I know how good was that, and anyway, the other thing was our flight was held up because a VIP from Canberra was getting onto the plane, right? And I was sitting there and I said to Matt, I wonder who it could be. And some woman in the old like across from us goes, It better not be Albo. As if Albo's gonna fly out to Uluru on our flight. And um, and it was the it actually was the Spanish ambassador's husband. They were talking about it as if it was the Spanish ambassador that we were waiting on. But this was only after before that uh the captain came down to sit next to him and have a chat with him, and they were talking about the Israeli war. Yep, and I I turned around to Mark and I said, Oh my god, it's the Israeli ambassador is on our flight, and Mark just grabbed my table, which was attached to his chair, and shook it. It was the poor bastard with the Spanish ambassador's husband. Oh my god. So um on the on the trip back, we were told that um Katrina's other friend, Amanda, was going to be on it, but she wasn't. So um, it was really nice. Qantas looked after us very well. At the other end, though, um, they took my chair to like back in Sydney when we got home. They took my chair to a completely different location to where I was taken when I disembarked. They were going to bring my chair up to the flight deck for me to like use, um, but I had to use some electric thing with a person navigating me through the airport at high speed.

SPEAKER_02 14:50

Look, it was that's kind of cool too, right?

SPEAKER_01 14:53

Look, it was all cool until it took us an hour and 25 minutes to get out of the airport. Right.

SPEAKER_02 14:58

But when they were so you so you had to live like a normal person.

SPEAKER_01 15:04

No, everybody is gone. And anyway, so um, but when they screwed the moving of the chair to the like up on the bridge, um we we got given some red wine. She said, What do you drink, red or white? And one of the flight attendants shoved some wine in our bag. I know that that all I can say is corners excel themselves.

SPEAKER_02 15:32

What do you drink, red or white?

SPEAKER_01 15:34

Yes, well, I don't drink, I haven't had a drink in ages. Oh no, tell a big fat lie because the champagne coming to me on the flight was such a sweet thing. I did have some. Good, it was very nice. Good, yeah, yep, exactly. Life's for living, Portia.

SPEAKER_02 15:54

And you can't die yet. No, like you have to wait until you are dead.

SPEAKER_01 16:01

Well, we've got a trip to Fiji books in January because we all need a goal.

SPEAKER_02 16:07

No, I agree. I agree.

SPEAKER_01 16:09

Yep, what's the worst can happen? I don't make it, and they all go anyway.

SPEAKER_02 16:13

Well muffing your to take your ashes and chuck them in Fiji water.

SPEAKER_01 16:19

Yeah, let's do that. I'll be up for that. Yep, bye. Bye, Mom.

SPEAKER_02 16:28

Please don't die before then.

SPEAKER_01 16:30

No, I'm not planning to. I'm planning on this drug that I'm on. S-I-R-2501 is the drug.

SPEAKER_02 16:39

Right.

SPEAKER_01 16:40

I'm planning on that to work very, very well. Um, every day I take it, I say to Mike, oh, this is the cure, isn't it?

SPEAKER_02 16:47

You know, because it's like writing winning on winning ticket on your lottery ticket.

SPEAKER_01 16:53

Yeah, we should do that. Hey.

SPEAKER_02 16:54

Well, people do, and they win shit with winning ticket on it.

SPEAKER_01 16:58

Oh, so that's the secret.

SPEAKER_02 16:59

Well, it's one of them.

SPEAKER_01 17:03

So I and you know, we were talking about pilgrimages last time. So I do meditations that I often find on YouTube, and for some reason this one came up and it was a bit woo-woo ju-ju kind of thing, and I don't mind that, I love that stuff. Um, some of them are a bit weird when they start talking, you know, depths of Atlantis secret frequency heals everything, weirdo stuff.

SPEAKER_02 17:33

I like it, and I particularly like their aluminium foil hats.

SPEAKER_01 17:38

And and so anyway, I um I did this meditation, and this woman, she's right into Reiki, but she believes that she channels and she channels archangels. Now I think Wow. So I think I've had the conversation with you about when I was in Thailand, the colours of Archangel Michael and Raphael kept coming up in my meditation, and they talk about oh, this beautiful pure white light. And I was going, Oh, but I've got blue and I've got green, but Archangel Michael is blue and Raphael is green. And when she was talking about, okay, she recorded it on for Easter Sunday, but it was out on the Saturday, and so I was lying there and I went, All right, I'll listen to this. And in it, she talks about at any one time we are walking many different timelines. At any time, we can decide to stop and let go of all the shit in that timeline and move into the next timeline. The other thing that the lovely Katie said to me as we were coming into land, she said, look out there on the side of Ularu, there's a rock formation from weathering, and it's called the brain. And she said, I think that's going to be important to you. I know, right? So I'm there going, all right, this is just getting cooler by the minute. And we talked about how I was listening to a book, um, an audio book, and she was talking about pilgrimages and talking about Uluru, which we mentioned last week. So, anyway, I am listening to this, and she talks about when you get to that point where you're ready to just go, you know what, I don't need this anymore. You can pack these things into a metaphorical suitcase, you can get on the bus and just leave your bags at the bus stop. Just leave it behind. So I'm doing this meditation, going, yeah, that's a really cool idea. In fact, I think when I do my loop around the base of Uluru, I will stop at a bus stop and I'll leave my bags behind. Yeah.

SPEAKER_02 19:58

Great. And sorry, did you do the whole loop?

SPEAKER_01 20:01

Yeah, we did. We did.

SPEAKER_02 20:04

Wow.

SPEAKER_01 20:06

In that chair. We got up really early and we went out, we watched the sunrise, and then we went down. We didn't go from the Marlar walk, we went from the one that's a little bit excuse me, further east, and only because we thought there'd be more shade. But about four weeks ago now, there was a huge amount of rain, like the most rain they've had in 30 years. So butterflies were everywhere, the grass was lime green and like two foot tall. That ages me. That's 60 centimeters, pets.

SPEAKER_02 20:42

And two foot tall, we get it.

SPEAKER_01 20:44

Yeah, two foot tall. And the track was a bit sandy in spots. Mark, bless him, pushed and assisted. He didn't have to push the whole thing. Um, and we got all the way around, and I'm really glad we went in that direction because we kind of went anti-clockwise, I think. And yeah, and mainly because we wanted to be out of the sun, because by 11 o'clock it's 34 degrees and honestly. Crazy. Crazy. Yeah. So we and there's a whole section where they don't want you to take want you to take photographs, and so we went quite wide around there, and the track is beautiful, but for lots of it, there was narrow paths with grass. And anyway, we got around, and Mark said, Look, there's the brain, and like apparently, the dreaming stories for the Anungu people, um, you don't know what that formation's for. I think men teach it to boys, but again, like I said last week, doing a pilgrimage is not about appropriation or hitting up the local people about what to do because I'm not, I'm a white woman. From Sydney, you know, it's like, but on the side of that thing is a big brain, and it really looks like a brain. It's amazing. I was googling before I got there what the stories were about it, but there's none. Okay. And well, that's kind of nice. Yeah, it was really nice. And we got to this section and it was a bit shady. And Mark said, he goes, I'm just going to walk ahead. You can stay here. And do your thing. And so I did. I sat there and I was had a lot of gratitude for my ability to even be there. And I had my bags all packed and I left them at the metaphorical bus stop underneath the brain at Uluru. Wow. So yeah, there you go.

SPEAKER_02 22:49

Amazing. Amazing. So Val and I walked anti-clockwise.

SPEAKER_00 22:55

Ah, cool.

SPEAKER_02 22:56

But we only did water hole to waterhole.

SPEAKER_01 23:01

Okay. It's quite shady.

SPEAKER_02 23:03

Oh, it was beautiful. And it was through the non-photographic women's section with that amazing uh piece of rock that looks like a tiger's head.

SPEAKER_01 23:15

Yeah. Just beautiful amazing rocks out there, like that are part of Ularu. Yeah. And I I wish I could put into words, there is something very, very special about that place.

SPEAKER_02 23:29

Great.

SPEAKER_01 23:29

Yeah.

SPEAKER_02 23:30

I agree. Did you touch the rock?

SPEAKER_01 23:32

I did.

SPEAKER_02 23:33

I did. We felt like it was learning us.

SPEAKER_01 23:39

Oh wow. Amazing.

SPEAKER_02 23:41

We put our hands on and we really felt like the rock was learning us.

SPEAKER_01 23:46

Yeah. And when you say learning us, it was learning about you or it was teaching you?

SPEAKER_02 23:52

No, no, just taking in taking info. Yeah.

SPEAKER_01 23:56

Wow. Who are these whiteys coming up? Yeah.

SPEAKER_02 23:59

Well, who's that filthy cross dresser? Very cross.

SPEAKER_01 24:08

And the other um lovely part of all of this is there was an earthquake on Sunday morning. It was. Yeah. Mark and I woke up and I was like, oh, I need to get up and go to the bathroom. And Mark was like, Yeah, I'm awake too. And the night before we'd met this really lovely couple from the UK, two couples from the UK. And we did the sound of silence dinner. And because the full moon was happening out there, because it was Easter, um, about 80% of the stars were washed out. But we we had great company, we really had beautiful company. And we bumped into her and she said, Oh, earthquake. And we went, wow, that was just incredibly special. But we learnt about the Seven Sisters and the Milky Way, and you start to have a really good appreciation of just how significant like those things are in an environment like that in particular, you know. And we um we bought two paintings while we were there.

SPEAKER_02 25:21

What did you get?

SPEAKER_01 25:23

Got in the hallway here. I bought one 10 years ago, and it's all black and white, and it's the story of water holes moving from spot, and this one is a bit similar to that, it's all black and white. Then back in Yolara, um, the locals will often um sell their artwork, and we got a one, it's all blues, and it tells the story of the Seven Sisters, and so it's got the Milky Way and it's got Bush Takar, so things that were important to the artist, and there was some really, really nice art.

SPEAKER_02 26:05

So I have longed for a Seven Sisters painting.

SPEAKER_01 26:11

Thank you.

SPEAKER_02 26:12

Yep.

SPEAKER_01 26:13

Why didn't you tell me? I could have got you one.

SPEAKER_02 26:15

No, no, no, no, no, no, no. Because I continually see different Seven Sisters paintings, and I cannot ever make a decision on which one. Um the the different imagery that the First Nations people bring to that um those stars is just fabulous.

SPEAKER_01 26:39

This and they were one thing that really knucked me sideways is the painting that we bought. She had a white woman helping her, um uh like to sell, and the woman said to us afterwards, she goes, Oh, she goes, it's really good that she sold a painting she hasn't eaten today.

SPEAKER_02 27:03

Wow, yeah.

SPEAKER_01 27:05

And I went, wow, okay. And I just thought, like, the the cost of food out there is ridiculous, insane. It's just insane. Um, the other woman that we met who um when we bought the second painting, no, it wasn't, it was when Neil bought this, bought his painting. The woman that he bought the painting off was sitting there with the woman, and she turned around and she said, Um, she goes, Where are you from? And I said, Oh, like we're Robertson knew Wollongongong, because I figured she'd know Wollongong. And I was I wanted to say we're from Tarawell Country, but you know, and I did. I said, Oh, we're Tarawell Country, and and she went, yeah. And then she said, she goes, uh, and and the way because English is not the first language for these people, and she said, We're we've been, we're we're going on a trip Sydney to Adelaide, but when I looked up the website, they've already just done it, so it was just the use of going. She she meant we've been. So she was part of the Central Australia Women's Choir, Aboriginal Women's Choir. And she and I went, You're kidding. And because like I've heard about them, but then when I looked at the website, there it's beautiful. And I'm thinking, I wonder where they played. Oh, they played the Opera House Porsche, they very posh, very flash. And um, and she goes, Yeah, you look up the website. And I went, Yeah, okay, I will. And she was she was lovely, her face just lit up, and I thought, I thought we we need to learn a lot more about what is important to the people around us on this country we call home.

SPEAKER_02 29:03

Well, we've just definitively told them that we don't care.

SPEAKER_01 29:08

I feel yeah, and that's when I sit there and I go, how can I look her in the face and say that? You know, how can you sit there and look a First Nations person in the face and say, Oh, I didn't know, so I voted no. Ignorance, ignorance personified.

SPEAKER_02 29:30

Well, I don't think it's just ignorance, I think it was an excuse to do something horrifically racist.

SPEAKER_01 29:37

Yeah, I think so, but but you know, nobody likes to be called a racist even when they're being a racist, right?

SPEAKER_02 29:43

In fact, that's the time they least like it.

SPEAKER_01 29:46

Yeah, yeah.

SPEAKER_02 29:48

I'm not a racist, but well, as my friend Kath says, you are, but racist, but I've got a question for you.

SPEAKER_01 30:02

Yeah.

SPEAKER_02 30:02

Um, which we haven't got to yet, and we're halfway through our well, more than halfway through our chat today. Oh, yeah, yeah, yeah, yeah. So today it's card 11. Good card 11. So you already gave me 12, and I think we need to write some more, please.

SPEAKER_01 30:20

Yeah, we'll write some more.

SPEAKER_02 30:22

So call to action for listeners struggling to access a Dana Varone or similar treatments or any treatments under ceremony, yeah. What do they need to know, and how can they reach ABC Ilawarra to have a chat?

SPEAKER_01 30:45

Um, I think we have put that information in the episode, but I will put definitely put this episode or no, in the episode we talked about, it's in the crib notes, but um what I'll do is I'll make sure that it's actually in the notes for this episode. Um look, what I would say is um, and can I just drop a bit of information that I got recently?

SPEAKER_02 31:15

A family member Hello Lisa, what do you think we're here for?

SPEAKER_01 31:19

A family member of mine is um she does aged care assessments over in WA. Okay. Um she rang me the other week and she said, I've just done an assessment on a woman who is in her 70s. Um she was diagnosed with ALS a month after me. She's already needing help to transfer from you know bed to chair, chair to toilet, and all those sorts of things. Um, and the amount of payment that she will get compared to me. So I have a very different package because I was diagnosed under the age of 66 or 65, whatever the cutoff is.

SPEAKER_02 32:12

Oh, yeah, we've talked about that.

SPEAKER_01 32:14

Yeah, so her her package is literally one-fifth of mine. Um, her husband weighs uh like 15 kilos less than her and is in his 70s as well. He is trying to physically manage her. Um, it just was heartbreaking to hear about it. And I said, I said to you know, this family member, look, is there any way you can get in touch with M D WA about this? Um, and get in touch with your health minister. This is appalling. Like, and the needs of people with ALS are so different, and it is a fairly fast progressing illness in the world of deteriorating conditions that we can all get. And like at Christmas, I didn't need a wheelchair. Um, by January, I needed a walker. I now use a wheelchair purely because I have had it drummed into me that I need to preserve my energy for the things I want to do. So um I I use it probably more than I should, to be honest. I I said to Mark, I need to get out and go for a walk with my walker because this is an illness that if you don't use it, your brain forgets it's there. So you you can if you if I've been sitting in the wheelchair for a few hours, of which was happening a lot when we were out at Uluru, um, I would I would get up and it was like my left, my right leg just forgot. And so, you know, wriggle your toes, stretch your legs, push up your heels, that kind of thing, just to get it going again. The idea that there's a woman out there who literally will have no access to the things that someone like us desperately needs purely because she's 72 as opposed to 59. That's a heartbreak.

unknown 34:19

Yeah.

SPEAKER_01 34:21

And this and the speed at which she sounds like she's progressing, and we know A-LS is a mental game, like you you've really got to keep your mental sharpness about you, um, and just make plans. Always, you've got to keep making plans, but it's like for me, I go the minute I sit down and give up, my everything will fall apart, and and that's not a daily struggle, it's just you know what, have your moment, have your moment of being sad, and just make a plan for what you're gonna do next, you know.

SPEAKER_02 34:59

Can I also say that giving up is a valid option if that's what you want to do?

SPEAKER_01 35:05

Oh yeah, thank you for making that clear, Portia. Um, if you want to give up, no one's gonna be cheering you on more than me. We've all got a right to choose how we exit. Yeah, for sure.

SPEAKER_02 35:18

I seriously think, especially for something like ALS.

SPEAKER_01 35:23

Yeah, yeah.

SPEAKER_02 35:25

We should be actively offering a dignified exit.

SPEAKER_01 35:31

One in three people with ALS is now choosing VAD. Like that one-third of the actual deaths is a VAD, which is really great because it wasn't on offer a few years ago.

SPEAKER_03 35:47

That's right.

SPEAKER_01 35:48

So you get the you get the option of um CO2 poisoning or asphyxiation, or a VAD where you choose your time and place and go to sleep. Can you go to the vet for the green dream?

SPEAKER_02 36:05

So I have put dogs down, and it is so peaceful. Yeah, it's it feels dignified to me rather than have a dog that is worried because it's sick, uh, is not eating properly or can't walk properly. I just feel like it's a gift.

SPEAKER_01 36:25

Dogs live in the present, and I think that's why we love dogs so much because they keep us centered and grounded and present. So every moment for that dog is sickness or pain, we need to do the right thing by them. I've done it. I've yeah, and there's um a friend of mine, Nicola, she had a dog, and he came out here, and all the dogs were swimming in the dam here, and he ran down and just dived in. Now she had an appointment with the vet the day after for him, and he was like too tired, too sad, and then he saw all the other dogs swimming, and he just went, you know what, fuck it, I'm in. And he just ran in for a swim, and she turned around and she said, I'm gonna cancel the appointment. But a few days later, she got in touch with me and she said, puzzle left us today because I'd rather go a day too early than a day too late. Yep, that's courage, that's courage right there.

SPEAKER_02 37:32

And I don't wish you to go. No, but when you're ready, I would like to be there to wish you on your way.

SPEAKER_00 37:40

Oh, thank you. That took a dive, yeah, and and you know what I wouldn't want to die in a hospital.

SPEAKER_02 37:53

No, no, so there was a movie many, many years ago where a woman had all her friends over for a for a bit of a party and they had food and it was like a living wake, and everyone made their speeches and etc. etc. etc. etc. And then everybody left except a couple of close friends, and she took whatever she took, and they were just with her as she went off into the universe.

SPEAKER_01 38:23

Yeah. My friend Chris, and I know she listens to this podcast. Hey Chris. Yeah, lovely Chris. Her partner was Mick, my friend, who passed away. Oh, yeah, okay. From ALS. Um, we had the conversation. I said, what was he like? Because he had an episode where he was choking. Um, and I I'm starting to get changes to my speech now. Um, like I can I can feel it. Um, but especially if I'm tired, I haven't really had real choking episodes. I've had a couple of episodes where I swallow, and that part of your throat that closes up to stop fluid going into your lungs hasn't quite closed. And you go, whoop, and you cough for a few minutes and life goes on. Mick had an episode of that that did not stop. And he was his vocal cords, I think, from what she said, sounded like they were spasming. He was in a really bad way. He had bulbas, which starts with speech. So there's a few different types. Bulba onset affects speech and swallowing a lot earlier. I have limb onset. Um, limb onset can go bulba. Um, some people their voice gets croaky and soft and then stays the same. It's fine. I would hate to lose my voice. I really do.

SPEAKER_02 39:55

Yeah, how can you bark orders if you can't speak?

SPEAKER_01 39:58

Yeah, exactly. Um oh my god. I I've I've now got a speech therapist that is gonna connect with me very soon, but yeah. Oh, you froze, Porsche.

SPEAKER_02 40:13

Yeah, you froze too, babes.

SPEAKER_01 40:15

Oh no.

SPEAKER_02 40:16

Sorry, I can still hear you.

SPEAKER_01 40:18

Yeah, okay, that's good. Yeah, yeah.

SPEAKER_02 40:20

So you're back. You're back.

SPEAKER_01 40:22

Yeah, I'm back. Where did I get up to?

SPEAKER_02 40:24

You were talking about bulba and limb.

SPEAKER_01 40:27

Yeah, so bulba onset affects speech first and swallowing. And those people tend to have more difficulties. I have limb onset, which is a bit slower. Um, because limb onset, you can sort of get around without your arms and legs. It's very hard to get around without being able to swallow and not being able to breathe properly. And so, yeah, um, but so he activated his VAD after that episode. Um, he was, and I said to her, what was he like? And she said, once he activated it, he was happy as a clam. She was going, you know, through all seven layers of hell with the full full knowledge that this was coming to an end, and which was incredibly difficult for her. And I think we under, we under, I don't think we undervalue, we we probably underestimate the level of expectation and burden. And I don't and Mark would die if he knew that I said the word burden, he hates it, but it's a lot, it's a lot for someone to care for with this. It really is.

SPEAKER_02 41:46

Yeah, and like it is a it is a burden, Lisa. Like it might be a willing, gorgeous burden that you're happy to do, but you know, it's a burden.

SPEAKER_01 41:59

It's tough. Thank you. And but she said he was happy. He was really happy.

SPEAKER_02 42:05

Of course he was.

SPEAKER_01 42:06

Yeah, yeah.

SPEAKER_02 42:08

The worst decision had already been made. Sure it is. Sure it is. Well you're a fighter. It's far for you, it is far for you, Lisa.

SPEAKER_01 42:25

Well I also think that like I'm doing things a bit differently. Like, and and Chris and I have had this conversation that I think Mick was more accepting that this was he was more fatalistic about it. Okay, and he was an amazing academic, he was the funniest bastard. I you have met him at Mark's 50th.

SPEAKER_02 42:56

Right. Well, there was a lot going on that night.

SPEAKER_01 43:00

There was, there was, but you you have met him, and um, and he was a really, really great guy. I I find the similarities between his onset and mine bizarre, really bizarre. Yeah, he injured he injured a knee.

SPEAKER_00 43:20

Yep.

SPEAKER_01 43:20

Um, he tripped, whereas I now think I tore my hamstring, but I think I tore my hamstring because it was tight because I had ALS. I've never had tight hamstrings, I've never pulled muscles. That's just, you know, I'm not that kind of person. And I was running, yeah, I was running around doing all kinds of crazy stuff, doing agility, not being as fit as I should. And then bang, out of the blue, I had this very mild sort of D cell for like running, and I screwed my knee and pulled my hamstring. So he had an episode like that. It wasn't until he went to a physio to get some more treatment after he'd had treat I think he had surgery, I'm not sure. Um, and they could see the wasting in his leg, but they could see the wasting now starting to happen in the leg that wasn't injured. And so, yeah, at that point they were like, you need to see a urologist. For me, it was the nurse at the martyr, you know, you need to see a urologist urgently. Not that I hadn't been trying all year, but but yeah, you get to not while I'm drinking, Lisa.

SPEAKER_02 44:37

I haven't been trying all years, yeah.

SPEAKER_01 44:40

Uh, you know, you you get past it, like I'm in the trenches with this now, but um like that it's not all shitty trenches. I I'm starting to forget what it was like to walk around without it. Wow, I am because I've been like in I injured my knee in November 2024, so I had some degree of discomfort. It's a year since I went to the neurologist who fobbed me off when he should have done the um, he should have done the extra test, it'll come back to me in a minute, but the nerve conduction study that he did, which the fact that my nerve conduction study was normal should have been a red flag for him to look further. ALS is one of these illnesses where everything comes back normal, and there's one test that they do. Oh my god, I'm having a brain meld. Um, but this one is it's not pleasant, but it can put needles into your muscles and it will test the conductivity so that once you sort of brace against it, it goes off. It looks like white noise on a screen. And with me, they said halfway through, look, we can stop here if you want. So essentially they were telling me, Yeah, you've got it. But we knew that we knew I was ticking all these boxes, but for him, the fact that I had weakness in an arm, I had fasciculations in two fingers in my hand, and everything else was normal. The fasciculations of the twitching that ALS people get. Now, I'm not a particularly twitchy case, you know, there's people who literally are twitching around the clock. Mick was getting a lot of twitches. I remember him telling me that I can get them, and I think I said to you last week, I can breathe and meditate through them and they go away. The night that I got told that I had ALS, you can imagine the level of adrenaline coursing through my body was so epic, um, I was literally twitching head to toe. So there is something about your mental state with all of this. And I've I've been told by my neurologist um that the fasciculations in themselves are not an indication of disease progression. So if anyone's out there with ALS who's particularly twitchy and thinking their ALS is running rampant, just take a deep breath. Don't stress because I even had my GP. Well, I have two GPs. I have one in area, one out of area, just for the purpose of dealing with community health. The one in area told me, and it really upset me at the time because I said, Oh, I find if I meditate, the fasciculation stop. And he's his words to me were Porsche, no, he goes, That's just the muscle dying out, it'll move on to somewhere else. Now that is wrong. So if your doctor has told you that, slap them slap them across the face, honestly, because I walked out of that appointment that day, I just broke down. It was awful. It just felt like God, here I am going, wow, I can actually breathe, calm myself down, and these twitches really settle. And he just went, nut.

SPEAKER_02 48:21

What a dick. Yeah, twitching like Parkinson's.

SPEAKER_01 48:27

Yeah, people with ALS don't seem to freeze up like Parkinson's and MS people. There's a there's a freezing that happens. Um, there is the the drug that they've got me on, the long-term goal is for Parkinson's MS, peripheral neuropathies, like we've discussed due to chemotherapy and things like that, and ALS. So they're looking at this across the board. So what they're looking is preserving neuron health. I now with Parkinson's, and this is where I'm no expert because it's not it's not what I'm my lived experience is, uh but as I understand it, it's to do with dopamine. Okay, and that's what causes the tremors, and I don't know whether it's too much or too little dopamine. I'm guessing it would be too little. Um, but only this morning one of the community nurses was coming to work as we were leaving, and she said, Oh, I wanted to talk to you. And she told us about a thing called a surfe. And a guy who's got Parkinson's has been using this, and he's using it to send an electrical current that bridges the nerves and stops that freezing. So I know there's just so much going on. Um, I've got to confess that yesterday I did go down a bit of a dark rabbit hole because I have seen another um integrative GP who specializes in neuro, um, and that's the one that Katrina recommended to me. He was brilliant. He made a recommendation about a clinic in Canada that is doing really good stuff with ALS. I thought, surely there'll be a story on this somewhere. Now I went in and on YouTube there was a story and it wasn't favorable at all. So, yeah, and that led me down the path of doing a bit more researching, and I just thought, God, there's just so much to cover with this illness. You know, you've really got to, you've really got to navigate it with um a sense of curious curiosity, but more be aware that there are some sharks out there as well. Now, I'm not saying the doctor in Australia is a shark, I'm not saying the clinic is dodgy. All I'm saying is that someone out there saw fit to do like a 60-minute story unraveling this clinic as being a bit of a chunk.

SPEAKER_02 51:16

Wow. In Australia, not the Canada one, the Australia one.

SPEAKER_01 51:21

The Canada one, the Canada one. Now, I'm not saying clin the clinic is dodgy, but you know, what I watched, I was just like, yeah, I can see why. Like$80,000 US to attend.

unknown 51:36

Right.

SPEAKER_01 51:39

Yeah. However, can I just also um turn that one minute to wrap up? Oh, okay. Um, on the way home from the airport, I was listening to a podcast, Dr. Dale Bresden, who wrote a book that Katrina recommended me. He did this podcast in January. In it, he said, we are now getting to the point where we can now say ALS can be a treatable condition. And I was like, fuck yeah. Because there are people extending their lives, there's people doing all kinds of stuff. So maybe we should end on that high note. I love your sunny face. Look at you.

SPEAKER_02 52:22

I love your face. I would also love that you have taken off the the fuzzy background.

SPEAKER_01 52:31

Oh, it's beautiful up here today.

SPEAKER_02 52:34

It's beautiful down here today.

SPEAKER_01 52:36

Yeah, you're gonna get in the water.

SPEAKER_02 52:38

I am not gonna get in the water. I'm gonna have a bath. Does that count?

SPEAKER_01 52:41

Yeah, yeah. You're working tonight.

SPEAKER_02 52:44

I am working tonight, and I got back in drag for the first time, like only the third time this year, because I've had this terrible star. Yeah, and I was just like, I can't care about this star anymore. It's not going to be. I'm just gonna put makeup on over it, and I've had no reaction, so I'm happy.

SPEAKER_01 53:05

Is it still there?

SPEAKER_02 53:06

Yes, it's still there, it's there forever.

SPEAKER_01 53:08

Have you seen an ophthalmologist about it?

SPEAKER_02 53:11

I went to the eye hospital. Good, yes, all right. I love you to the moon and back.

SPEAKER_01 53:18

All right, and just remind everybody Thursday Saturday, Sunday. What's happening Sunday?

SPEAKER_02 53:24

Oh, new trivia at Lockhees. But that's they're gonna get this in a month's time, aren't they?

SPEAKER_01 53:32

Uh yeah, it'll come out afterwards.

SPEAKER_02 53:34

But Sunday night at Lockheed's Hotel in Leppington.

SPEAKER_01 53:38

In Leppington. And the last episode mentioned it, so that's before Sunday.

SPEAKER_03 53:45

There you go.

SPEAKER_01 53:47

So good to see you. I love you too. 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. Okay. Thanks again.