ALS to the Moon and Back — Episode 10

In Episode 10, Lisa shares a hard but important breakthrough with her infusion treatment, after another draining run-in with hospital bureaucracy. There’s also a big win: a new walker that is already making everyday life easier, plus a chat about advocacy, clinical trial confusion, swimming, old Sydney memories, leeches, and the strange art of keeping your sense of humour when life gets very real.

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 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.

SPEAKER_02 1:03

Hello, lovely Lisa Wright. Nice to see you.

SPEAKER_01 1:06

Hello, Forsha Tava. How are you doing?

SPEAKER_02 1:08

Oh well, so this is surprise uh podcast today.

SPEAKER_03 1:13

Yeah.

SPEAKER_02 1:18

For some reason, uh when we booked Sunday, I had taken this off the table. I know, but no problem.

SPEAKER_01 1:29

Lo and behold, I sent the message, and there you are.

SPEAKER_02 1:32

Well, like fantastically, because I just finished sending off all my trivia QA. So I was just sitting. Yeah, I was sitting right here. Um how are you?

SPEAKER_01 1:44

Good. Oh, yeah, I always am good.

SPEAKER_02 1:47

Um are you good?

SPEAKER_01 1:50

Kind of M. I um had a bit of a sad day yesterday. I but I've had a bit of a breakthrough with regards to my um my infusions because you know how while I get them done at community health, I have to be admitted to a hospital in the home. And that was requiring me, a doctor over at Barrel Hospital, for some reason was saying that every time I had to start an infusion round, the first infusion had to be done at the hospital. And yeah, which is fine if you have three and a half hours to sit there waiting for them to hook you up to your infusion. And and to be honest, I'm not an acute care person, which is what the ED is for and what it's structured around. I am someone living with a chronic health condition that has to go in through hospital in the home. And the only workaround that they had at the time was that I'd have to go in through the ED. Um, apparently, when I was there last time, and I need to really stress that um the staff over there are brilliant. The nurse unit manager escalated this as an issue last time. Like, why do we have a person who is slightly immunocompromised coming into the ED? Why is she having to come through here? Why can't she just go to community health? And um and apparently it was escalated. But yesterday I had an appointment to get to over at Norellan with the lovely Scott, my physio, who does the newbie treatments, and then we were going to go pick up my granddaughter from childcare in this big loop and come home. And that just had to go out the window while I sat there literally waiting for this nurse who was wandering around not making very good use of her time when and and it really triggered something for me. I got teary and I found it very hard to not to get myself back on on an even keel, but nothing like having a teary moment in the ED for them to escalate it again. And a senior doctor in the hospital came down and spoke to me and said, This is ridiculous. We all agree it's ridiculous. This lovely guy who looks like I don't know, he looks like he should be running an ashram somewhere at Byron Bay was the doctor on the ED yesterday. And he came up to me and he said, This is a really weird way to do this. And he said, We're just trying to make sense of it and we can't. And I said, We'll join the club. And anyway, next thing, this um this lovely doctor came down and and she said, Look, what's the number of your neurologist? I'm just gonna call her, but I'm just gonna tell her that she's an idiot. Well, she's not the idiot, she's been told that she doesn't have admitting rights, so I had to be handed off to another doctor. Like the whole thing's a whole heap of bureaucratic BS. Yes. But anyway, so this senior doctor at Barrow Hospital rang her while I was standing there. They didn't get to have a conversation because Jasmine, just jasmine, was unavailable. Um, but I've been told that from here on end, just jasmine will talk to community health and and I don't need to go to the ED anymore, which is cheery. I know, right? I know, and and because this this drug is so new, there is actually a lot of people out there that because the regime of having the infusions is so full on, they just don't freaking want it.

unknown 5:47

Right.

SPEAKER_01 5:48

They just go, nah, too hard, too hard. Um, I'm just going my low battery signs just come on. And um for my for my laptop, the things that you need to check before you sit down.

SPEAKER_02 6:02

So can we pause? You find you find a battery, and I'll go and get a drink of water.

SPEAKER_01 6:08

Okay.

SPEAKER_02 6:11

And we're back.

SPEAKER_01 6:12

And we're back after you just embarrassed him to Billy Open his door. I think he secretly likes it, Porsche.

SPEAKER_02 6:22

It's not a secret.

SPEAKER_01 6:25

We all like being called a spun, don't we?

SPEAKER_02 6:29

Mark, the big hairy spunk. Dun dun dun.

SPEAKER_01 6:34

He's surprisingly unhairy.

SPEAKER_02 6:38

Now you've ruined my fantasy. So I've started doing a thing. This is so not this is so not connected to anything except I've started doing a thing. I've started putting two little slices of cucumber and one of lemon into my bottle of water. Because it said so on the internet.

SPEAKER_01 7:06

Well, there's some people that um actually think that immigrants are taking over the country on the internet as well as well and we are everybody who's arrived since 1780. Yeah, we are taking over the internet. Yeah. We're listening to um Martin King, like Martin Luther King the Third, it's his his son on the radio on the way home from the hospital today, or from community health. And what was amazing listening to him is that people might think this is an issue for 2025, 2026. The USA, and and I'm not saying Australia's off the hook with this at all, but what's going on over there now is actually what's been going on over there for a very, very, very long time. It's just that it's happening more in more widespread areas and it's more overt, and the every person's got a camera on them now. And I I am absolutely staggered that there are people that could possibly still support this. Like I literally saw footage this morning that was released by a news channel, it wasn't put up by Joe Bloggs on Facebook, and it was Al Jazeera English, which is a very reputable channel, and it was a 16-year-old boy with his hands up getting gun butted in the face as he's surrendering to ice.

SPEAKER_02 8:53

Like these guys are thugs. Well, if I remember rightly, at Redfern station, didn't a policeman grab a child's head and throw him to the ground.

SPEAKER_01 9:04

I remember that. That was when was that?

SPEAKER_02 9:07

Wasn't even so long ago. No, it was like in the last five years. Wasn't even so long ago. And the the I I can't remember, it was one of the politicians or the head of police said, Oh, he was having a bad day, the policeman.

SPEAKER_01 9:19

Oh, bummer. I wonder how that child's day was going. Yeah, yeah. And there was another one I saw, which was two women that were being um arrested. I think it was in Denmark, and they're walking down the street, and the woman is really vocal, but um the as as they're walking along, this person is videoing it, and the guy that's holding the first woman literally kicks his leg back so hard into the woman behind that she collapses, and from there, Mary Hill breaks out. And I just think like this this is why like I know I understand that police work has to be done, I but this isn't police work, like ICE isn't a police force at all. You know, like what police force gets around in uniforms that they buy on Amazon and you know their faces with their faces covered.

SPEAKER_02 10:23

Uh so so there are many definitions of police force, but this is this is third right level.

SPEAKER_01 10:33

It is third right, and one of the and I was well brown shirts, it's exactly what the brown shirts did. And I was saying that, and then um there's this great woman that I listened to, um, Temeka Mallory on um on Instagram, she was involved in the Black Lives Matter. Oh yeah, and really interesting woman, and she said, one of the things that we've got to remember is that this is not new for the way black people were treated in the US. So when we draw lines between the Third Reich, we're forgetting about the fact that this is just this is just the way it's gone down in the US for a very long time.

SPEAKER_02 11:19

But now it's affecting people other than people of colour.

SPEAKER_01 11:25

Absolutely.

SPEAKER_02 11:26

Absolutely because that's when we start hearing.

SPEAKER_01 11:29

The dark gotten bigger. Yeah, yeah, for sure. And I think we have to remember that the fastest growing um political party in Australia right now is One Nation again, with Barnaby Joyce and um Gina's little helper, Pauline Hansen. So what a what a lovely little cohort they are. Like, I still can't believe that Gina Reinhardt's happily posing in photos at Mar a Lago with the Trumps.

SPEAKER_00 12:00

Like why why can't you believe that?

SPEAKER_01 12:04

Because does she really only stand for money? Like, does she really only you know my my my mate Mick who um passed away from MND last year, he did some really great documentary making and he was uh associate prof in communications and he had a story buried, and I'm gonna say this because he's dead and they can't sue him. Um but they can't kill him. They can't kill him. He had a story um buried about the indigenous women that Lang Hancock had father and children with over there. Wow. Yeah, and and it wasn't a few. It wasn't a few. And was it consensual? I don't know. I I don't I think it was. Not that I can imagine everyone wanting to shake Tim, but but the thing is is that Gene that can you imagine the idea in Gina Reinhardt's head that she's got half siblings out there who are First Nations people? Right. She'd implode. I often wonder what drives her.

SPEAKER_02 13:14

It's not care for the community.

SPEAKER_01 13:16

It's certainly not care for the community. And that's what gets me. How much is enough? How much is enough?

SPEAKER_02 13:23

Look, I think at least some people are broken. But they're also in a position. So if if I think if a lot of these people that do not have money were put in a position of power with extraordinary people around them helping them make more and more money, almost everybody would turn into a complete and utter vile shitsme.

SPEAKER_01 13:58

Yeah, but then you think of you know Jeff Bezos' first wife, and she is literally giving it all away, pretty much.

SPEAKER_02 14:05

So she was a thinker, and that's why she's not there anymore.

SPEAKER_01 14:08

No, she's not there anymore.

SPEAKER_02 14:10

And they're saying that Trump had um uh Havana put out of the picture because she had so much um uh uh what is it when you've got like evidence of his of his poor behavior?

SPEAKER_01 14:31

Yeah, yeah. The other one that cracked me up this morning is David Copperfield, the magician, is now implicated. Well, didn't I not that I think it's funny, it's just that I have to- What should we pull a 12-year-old out of my box? Well, and it's not funny, it's not funny, but I can't help but think what number of these self-righteous entitled white men, there's no drag queens in there doing this, there's no black people in there doing this.

SPEAKER_02 15:04

Well, that's why we're not allowed to do what hang on, there was a black guy in America just implicated.

SPEAKER_00 15:11

Was there?

SPEAKER_02 15:12

Yeah, that back then, and then let's also not forget Bill Cosby. Oh, wasn't he a creepers I it's a pandemic, and the more we talk about it, I feel like the more people feel the freedom to do these awful things.

SPEAKER_01 15:30

Are we normalizing it by talking about it?

SPEAKER_02 15:32

So there was a book I read. I can't is it Bryce Courtney who wrote a book about the the halls of power that were all pedophiles? The guy was living on the street. So I've probably misnamed it, miss everything that because you know how my memory is, but um that was when I was awoken to the idea that the halls of power uh held all these awful people, and then we had two of our ex-Australian prime ministers writing um uh references for a convicted child abuser from the church.

SPEAKER_01 16:18

Yeah, yeah. We're talking about you, George Pell. We are Pell went to hell, yeah, yeah. But I think the level of cover-up and effort that went into basically shutting down those people who were brave enough to speak up. Like, I really get why people don't speak up. I really, really get why people don't speak up. 100%.

SPEAKER_02 16:45

So we are well into our into our time today. Oh, that was a dark rabbit hole.

SPEAKER_00 16:51

Okay, just popping popping my head up for a breath of fresh hand there. Oh my god.

SPEAKER_02 16:56

I'm I'm glad we went there, but I have a new question. It's all linked. I apologize for that. Uh so where we're oh yes, so our question today, which is interesting because it is it is actually tangentially, is that how I say it? Tangentially, uh whatever.

SPEAKER_03 17:17

Yeah, we go in, yeah.

SPEAKER_02 17:20

Going public and political. What led you to contact the ABC Ilawarra? What was the experience like and what were the outcomes?

SPEAKER_01 17:32

Frustration. I think that's for me was it frustration and like I I think I've um I've mentioned here before, before we moved back to Sydney in 2011, I worked, um, I worked for it was called Spiritus, but it was essentially the Anglican Church in Queensland, which, in an ironic twist, if you think about the Anglican church in Sydney at the time, and I wouldn't even know what it's like now, it had the Jensen brothers basically running the show, incredibly conservative, incredibly homophobic. Whereas in Queensland, the the church up there was very much um, well, if the Archbishop of Canterbury says that same-sex marriage is fine, our job is to follow suit. Sure. And I was just so like, wow, and and I'm not a practicing Christian, it didn't mean that I wasn't going to get the job. Um, the the tenet uh with which I worked under was we had to provide commentary on unjust principles. So um I I had um really interesting time. I worked with Noel Pearson during that time on the Wild Rivers legislation that came in, which was a little bit of a greenwash, and and I'm and people by now will have guessed I'm fairly left-leaning in my politics.

SPEAKER_02 19:02

Just don't have to guess, Lisa.

SPEAKER_01 19:05

No, but but um but the the Labour state premier of the day, whose name will come to me, Blonde Guy, remember him? Peter somebody, I think his name was. Anyway, um, introduced this legislation in a very rushed fashion, appeasing the Greens so he could get it through, and essentially appeasing Southeast Queensland while the rest of Queensland was left having to really juggle some things up there. And at that time, and we're now talking 15 years ago, so you know what I'm saying could be well out of date, but I think there were nine pieces of legislation to navigate before you could build a house on native tidal land, and so yeah, so this wasn't making things easier up there. There were people up there that um, you know, I think Wenlock River had an airstrip and they were wanting to do eco-tourism, and the airstrip up there was only long enough that like a six to eight seater plane could get in and land. So, how are you going to get your virgin, you know, like winglet airplane to land there if you want to bring in ecotourism? Yet that's what they were being sold. Um, I I was actually a paid up member of the Wilderness Society when I was um when I started working in there, I cancelled my membership over this job. I really felt that the indigenous people of that area were being um the meat and the sandwich. As they always are, as they always are, and one of the things Noel Pearson, love him or hate him, he said to me, the problem we've got, Lisa, is that everybody wants to see these pictures of you know, indigenous people in full body paint dancing, doing some kind of festival. And he said, We're really we're up there hacking down waddle trees across mud-soaked like roads in order to get our children out to a hospital because there is no medical care. Wow. And that was very, very sobering. I think at the time there was 10 mental health care beds up in Townsville that were constantly filled with indigenous people, with um, you know, all the all the hallmarks of addiction, which um and and other mental health issues that one of the in I think I've we we've talked about this a little bit with and segueing back, like I do I do have a strong sense of social justice, so that's why I spoke up and went to the ABC, and I know for a fact nothing gets governments motivated like bad press. Yep, you know that's Can know something's awful, but if it hits the electorate that it's awful, then they get concerned, you know. Like what happened was a day for the media statement to be released, and I got a letter from the minister about two weeks ago addressing the letter I wrote to them. So ABC, 24-hour turnaround, May, six eight-week turnaround.

SPEAKER_02 22:23

So yeah, and that's the ABC.

SPEAKER_01 22:27

Yeah, ABC, ABC, yeah. Actually, I I do feel really glad that it went that way too, because you know, um going into that hospital yesterday, it is a beautiful new AD department. It's got very beautiful caring staff, and yet still I sat there for three and a half hours. And that was just, and and I'll be honest, one nurse was really dicking around. Like, yeah, yeah. And it was when I and what happened is that when she came over, this nurse said, Oh, we we'll we'll hook you up. And I said, Well, look, I've been sitting here now for quite a long time, and I had a physiotherapy appointment to go to, and at that point I broke down, like I didn't just break down a little bit, I was I couldn't be heard. I wear a mask in those um environments now because I I a virus can really knock me sideways. Um, and so and you would just see this gorgeous male nurse that was standing there. He said, he said, why don't we just let you go to the physiotherapy appointment now and you can just come back? And he he was generally concerned. The woman that had been dicking me around just looked very sheepish, and she did, she looked very sheepish for the rest of the time. And I said, Well, I was going on, and we were going to pick my granddaughter up. And anyway, the nurse unit manager then came, so someone went and said something to her, and she said to me, She said, Look, I escalated this two weeks ago. You shouldn't have to come through here in order to get this sorted. And I just said to her, This regime of infusions is 50% of my time, and I have been told I have a prognosis of 24 to 36 months. I said, I've got grandchildren, and I don't even know she could understand what I was saying. I was crying that hard. And and I and I was snotty and you were full Muriel's wedding. Oh yeah, yeah, yeah. I I I think even I would have given Tony Colette a run for her money. But um, and then poor old Mark, I I got out of there and I said to my, I just don't know that this is worth it. Like I know, I know. But you know, it's it's a regime, it's epic. My other bit of news is that um I went out and I got a walker last week. I think you told me. Yeah, how exciting. It was it was good. It's been a mental challenge, really hard to get my head around. Um, and yet the spasticity in my legs disappears when I use it. Right. Uh Mark doesn't have to worry that I'm gonna fly into a wall or anything. And we went and saw the Whitlams at the State Theatre on Friday night.

SPEAKER_02 25:39

Did you love it?

SPEAKER_01 25:40

Yeah, I did. God's a beautiful theatre, isn't it?

SPEAKER_02 25:43

It is, it is, it is.

SPEAKER_01 25:45

And and Tim Friedman is as sleazy and cheeky as he always is. He's gonna be like that until the day he dies. It was really great. And who doesn't love the Sydney Symphony Orchestra?

SPEAKER_02 25:56

They're okay.

SPEAKER_01 25:57

Oh, they're they're they're good. I know they are yeah, yeah. And I love the theatre and um Mark, I I when we got to the hotel, we stayed at the Grace Hotel, which is this amazing art deco. Isn't it just gorgeous?

SPEAKER_00 26:15

I love art deco.

SPEAKER_02 26:17

So I have a story about the Grace Hotel. Yeah, it used to be the Grace Brothers headquarters, is that it was. Yeah, and mum used to have to come and pay the Grace Brothers card at the Grace Hotel.

SPEAKER_01 26:33

I remember those Grace Brothers cards, I think my mum had one.

SPEAKER_02 26:37

Yeah, so uh she would have to come into town and buy all the stuff for dad's shop and order stuff and all that kind of stuff, and uh go to the Grace Hotel and pay her Grace Brothers card. We used to love walking in there.

SPEAKER_01 26:54

It's just and it still is, it's beautifully maintained, it's really nice. Um I I said to Mark on Thursday we went to the pool. I got three swims in last week. Woo! Yeah, yeah. I think I might message Michael Clem and say, you and me and our neuropathies, we've got so much in common. I think we have a lot to say. What is his neuropathy? He has got one that my friend um Nat, her husband David has, and it's poly something, it's an autoimmune one as well. Um ALS, they say there's autoimmune factors involved, but it's not just solely, um, but it wastes your peripheral nerves. So it will in some people it will stabilize, some people it will get worse. Um, I think that my friend David, like Nat's husband, I think he has monthly infusions for it. But um, but it it ends up like you end up with the same sort of issues with the muscle wasting in your lower limbs that I've got, but with me, the muscle wasting goes into all your muscles ultimately.

SPEAKER_02 28:13

So I think that you should invite him on.

SPEAKER_01 28:17

Michael Clint.

SPEAKER_02 28:18

I'll send him it would be interesting to find out how different the experience was for someone with fame and uh historic.

SPEAKER_01 28:29

I what I really relate to is that he I I read an article um that came out in the last week, and what he was saying is that it's really hard, and you can only imagine this guy was probably considered one of the most amazing athletes in the world.

SPEAKER_02 28:51

He wasn't probably he was one of the most amazing athletes.

SPEAKER_01 28:54

He was, he was, it's a fact. And also, I remember when Olivia was little and she was diving down in Melbourne for something, and he came out of the uh the top pool coming down the stairs. If anybody's been to um the Melbourne Aquatic Centre, there's a big staircase that comes down, and he was coming down as the kids walked in, and the kids were all like, It's Michael Clint, it's Michael Klim, oh my god, and he trotted down the stairs, smiled at them, and then something in his brain registered, these kids are blown away, and I need to stop and acknowledge them. And it wasn't anything other than genuine, sincere best wishes and wanting to do the right thing for this group of 12-year-olds that were all to you, and um, and he was beautiful, and he's as tall as a mountain, he is so tall, and and anyway, I often think about him because he was just this epitome of human fitness, and now he literally has to walk with assistants.

SPEAKER_02 30:01

Um I think it would be very interesting for us to talk to him.

SPEAKER_01 30:05

Yeah, yeah, it would be, it really would be. And for me, when what was the turning point for me was when my granddaughter was here with um with my daughter and her husband and the new baby, and she is Animal Man, like that kid. If I people think I'm animal man, she's next level, and she wanted to go out and feed the alpacas, and so everybody except my my son-in-law and I stayed behind, and I think he stayed behind to keep me company because I don't know what the I don't know what those Irish mums do, but he is Irish and nobody has manners like my son-in-law, he is the nicest person, he's just beautiful, and yeah, and anyway, so he stayed with me, they all went out, and I was just sitting there and I was thinking, this really sucks. Like that should be me out there as well, and I was thinking, how am I gonna do it? And and I I just we were at the pool, and I said to Mark, we're at Port Kembler, let's go to Wollongong and let's have a look at walkers. And as soon as I put my hands on it, I could walk upright and the spasticity stopped.

SPEAKER_02 31:23

Amazing. So, what did you get? The the rectangle one or the triangle one?

SPEAKER_01 31:28

I got the rectangle, the seat back is curved, but it's a rectangle, but it's an all-terrain one, and so the first thing I did when I got it home is I walked around the backyard, which I hadn't done in ages. Like I'll go out and sit out there, but I walked around, I walked up to the chook pen, I helped um Mafs, who's here doing some woofing with us. Um, I helped her catch a chicken and put it away with control. So, yeah, all of a sudden you become, you know, an active contributing person on the property again. This is a win. A massive, massive win, really big win. And instead of, you know, Mark having to double part, go get the wheelchair at the pool. We stopped for a swim on our way home from Sydney on Saturday, and um, I could walk in with the walker and wait for Mark to park the car and he came back. So really big, big changes. And I had a chat with the wonderful Kayla, who is my neurophysio, who turns up, she's really good, and she said to me that the reason why the spasticity stops is I'm now walking more upright, and so the pressure on my calf muscles is taken off, and it the spasticity reduces these.

SPEAKER_02 32:52

That's amazing. So you just said big changes, yeah, little thing, huge difference.

SPEAKER_01 32:59

Yeah, huge, huge, huge difference. The next big thing is we're going out to Ularu, and I need to figure out how we get around the base because I want to go around the bottom of that rock in its entire entirety.

SPEAKER_02 33:14

So we didn't do that. We got dropped off by the bus at one water hole and walked about a third of the way around to the bit where you then walk down to the that area that has all the shops and stuff.

SPEAKER_01 33:32

Oh, okay. So sort of like the back side of it from where you're looking at it from your Lara.

SPEAKER_02 33:39

I don't know.

SPEAKER_01 33:40

Yeah, anyway. Yeah.

SPEAKER_02 33:42

So that was honestly enough for us.

SPEAKER_01 33:45

Yeah, yeah, but I I kind of, you know, wouldn't mind, I just want to do the whole loop. Okay. But um, with that in mind, while we're in the shop, there is these amazing electric wheelchairs that are very compact and very um, they've got really groovy wheels. They literally spit on the spot. Yeah. And go across all kinds of terrain. And we said, Well, how long would a battery last? And the woman that was talking to us, she said, Oh, you know, probably about 20 hours. And Mark said, But if we wanted to go further and we're going on a long bushwalk, she goes, Oh, it would be a fair bit less. And for another 600 bucks, you can get a second battery that's even got a bag that you can put the second battery in, and then you run out of petrol and you can just swap the batteries up. So I could do it, I could do it in an electric wheelchair. Twenty hours. Yeah, but no, if it's if you're just doing little stuff, but if you're doing a big bushwalk or something like that, it would run out a lot sooner.

SPEAKER_02 34:58

So around the base of Uluru is actually really compact.

SPEAKER_01 35:02

It's very flat from memory. Yeah. Yeah. Yeah, maybe one battery would do it. Might not need the second one.

SPEAKER_02 35:11

Well, always good to have it.

SPEAKER_01 35:13

You don't want to run out 500 meters from the car.

SPEAKER_02 35:18

But the good thing about uh wheelchair is it's so much easier to airlift out.

SPEAKER_00 35:30

Oh my god, I love you. Oh dear.

SPEAKER_01 35:36

You don't want to be the person then go, didn't you bring a second battery?

SPEAKER_02 35:40

No, no, I want to be that person. I'm gonna be like I'm gonna be a mess. Get the chopper.

SPEAKER_01 35:51

Now I'm gonna poor Maps, poor Maf. Uh we've got this lovely girl from Portugal who is here at the moment. She's just walked past the window, and um we've had a bit of rain up here, and she was out doing some work in the garden, and we got a very panicked phone call that she had a leech on her leg.

SPEAKER_02 36:13

Fair enough.

SPEAKER_01 36:14

I know, I know, and she was truly distressed, and I felt really bad because we do get leeches, and I hate them. I hate them pretty much. I don't hate them. Nobody loves them up there with ALS.

SPEAKER_02 36:30

Nobody loves a leech.

SPEAKER_01 36:32

Nobody loves ALS. Same, same bucket.

SPEAKER_02 36:35

Yep, fair.

SPEAKER_01 36:37

Yes, she got it off her leg and it was crawling around the kitchen. And Mark walked in, and Mark's such a farm boy at heart. He just walked up, picked it up, walked outside, and she's going, Oh my god, I can't believe you're touching it. Yeah, well, that's him. Yeah, that's what he does.

SPEAKER_02 36:52

We used to use cigarettes to burn them so that they would release. Yeah.

SPEAKER_01 37:00

Salt does the same thing. Um, does it? I yeah, salt make I can't imagine it is very comfortable for the leech because they literally drop off really fast. I didn't salt.

SPEAKER_03 37:13

Yeah.

SPEAKER_01 37:13

So if you wee on them, I reckon that'd work. There'd be enough salt in your pea. They're very s they're very salt phobic.

SPEAKER_02 37:21

Right. Salt averse.

SPEAKER_01 37:23

Yeah, salt adverse. They don't like salt. So yeah, um, I um I was talking to my daughter because when I was sitting in that ed, I had to message saying, I don't think we're gonna get there. And she goes, All fine. And as she was driving to pick up my granddaughter, um, she she rang me and she just said, How are you doing?

SPEAKER_02 37:47

And I just went, Oh my god, not when I take a sip, please, Lisa.

SPEAKER_01 38:00

Talking about stuff and just how sucky it was. And um, and you know, I've got to remember there are good things happening. I just it's it's the it's the tediousness of being on a fortnightly infusion regime. Sure. And I've had a really nice two weeks before that, like going swimming and the weather's been nice, and we had an agility workshop here, and you know, it and lots of people to catch up with, and then all of a sudden I'm back on the treadmill of doing these infusions. And more than anything, like as I'll show you here, I'm I'm hooked up, you know, and so yeah, it is, it is, and so it doesn't like and I think it's a constant reminder that there's something going on with you. If if the legs not working and the arms not working weren't enough, you've got this thing hanging out your chest, and and it it hasn't really bothered me until possibly I think the second last infusion when I walked into the swimming pool and I'm I looked like a very sick person. And I don't identify with uh being a really sick person, but you know, actually Mark said to me, he goes, This week you need to tell people don't tag you in miserable stories. I have people tag me in the most miserable tragic stories about people with ALS. Oh, you might want to read this, Lisa, you've got this, and it's just like I said pet, I said love, I said duh.

SPEAKER_02 39:43

And do you say to them, good news stories only, please?

SPEAKER_01 39:47

Well, Matt said he goes, I think you need to put something on your Facebook page.

SPEAKER_02 39:51

Just just if they tag you, good news stories only, please.

SPEAKER_01 39:57

And just write back.

SPEAKER_02 39:58

Yeah, just write back good news stories. So then they can decide whether that should stay with your tag on.

SPEAKER_01 40:06

It should, yeah. And I um the person that did it the other day, I I think, and they and people do these things with good intention, but why would I want to read that shit? I actually think they mustn't even read it themselves.

SPEAKER_02 40:20

No, they just go, oh, it's ALS. That's Lisa. I love Lisa. I'm gonna send her some stories.

SPEAKER_01 40:26

Yeah, thank you. Thank you for thank you for making me, you know, want to cut my throat.

SPEAKER_02 40:32

But you wouldn't have ALS if you cut your throat.

SPEAKER_01 40:37

Um, interesting news today$40 million has just um been released. Zali Stegle has been lobbying for it, um, one of the teals. And I um I I like what it's to be used for. It's to actually bridge the information gaps that are happening between these different bodies. Right. You know, so like a classic example. Here here's you want to hear a new beef. I decided last week do love a new beef. Yeah, okay. I decided last week that I was going to look into what trials were available to me.

SPEAKER_02 41:16

Oh, yeah, you were talking about that.

SPEAKER_01 41:18

Yeah, so I did, and I went on. There was one last year, and it's for a cough medicine, um, that they've found it's it's called Ambroxyl, and it's actually on the restricted drugs in sport because it protects the um neuromcle junction, which is where the burnout happens in ALS. And it's just a side effect that they've gone, oh wow, this cough medicine seems to have this you know protection factor where in the where the new where the neurons meet the muscle. So anyway, I thought that would be really good because in myself, as my blood work's pointing out, I'm doing pretty well, it's just the muscle damage that happens, and my muscle damage, if you read my results, has slowed quite dramatically, which is really good. But it would be nice to slow it down even further if there's something available to me. And so I was told last year, and this is where I am a bit miffed, I was told that I couldn't go on any of these trials if I wasn't taking this drug called Ruyuzong. Yes, yeah, and even my advocate at MD New South Wales has told me how many of the people with MD do not find this drug particularly helpful. It makes them feel awful, it makes them feel sleepy, drowsy, unwell. And I think I'm not gonna do it, I don't want to do it. And it's in glute, it's a glutamate pathway inhibitor, and you need glutamate for a whole raft of other things, and just because there's a lot of it at the nerve junction, and I thought, well, maybe this cough medicine would be something that I could take that would be, you know, low risk. Anyway, I was told I couldn't couldn't take part in that study when I went on to the government site for clinical trials. There's nothing to say that you have to be on resole in order to take part in the trial. So I looked at the locations and I thought, well, clearly where my neurologist is isn't doesn't really want me in that trial. And I still don't know what the reasoning was behind it. I think it's a genuine error on my neurologist's part that she thought I had to be part of it, because there are studies where you do have to be on real usal. And anyway, so I wrote off to one, and then I got a call from my neurologist's department. And this girl said to me, We've got this message on an old phone number that has shut down and been um like immersed or you know amalgamated into um ours and we've had this message and you know we didn't put you in that trial because you didn't qualify. And I at that point I started to get annoyed, and I said, and I said, I got diagnosed in August. I first attended a clinic there in October. I began treatment fairly quickly. In fact, I was already on treatment by the time I had my first visit there, and she said, You had and I and I said, Well, I was told I couldn't take part because I wasn't taking real usole. And then they, and then she said, she goes, No, it was because you hadn't been on a drug stable for one month. And I went, hang on a minute, this is getting ridiculous. And I said, Well, why can't I do it now? And I said, I do believe I was stable. I'd had my first round of treatment, and she goes, Oh, well, it closed at the end of the year. Now, when I look online, it's still open. So, yeah, so I don't know what's going on. So, is she an idiot? I think there is a lot, look gatekeeping, yeah. There's a lot of gatekeeping going on, and as Zali Stegel pointed out in this article that was released today, there's not good communication between different bodies doing the research. Nobody, Porsche, has ever sat down and told me that I can register for clinical trials separate to my neurologist. Well, yeah, you can. I've already put my name down for one which sounds really interesting, that's um in April, and um, and I just think, you know what? There's I what I think's happening, and what I have a very strong sense of is there is a lot of um protecting of information, guarding of stuff based around funding models, or who gets to the finish line first, or whatever the shit is, but there's a lot of egos in play. Right. And and you know, I used to think orthopaedic surgeons were the ones with the biggest egos, nothing beats a neurologist, maybe a brain surgeon.

SPEAKER_02 46:43

Well, I did some work for Charlie Teo, and he was very nice to me, so I'm happy about that.

SPEAKER_01 46:47

I love Charlie. Charlie was my father-in-law's surgeon, and I wouldn't have wanted to have been his wife, but he was a bloody amazing surgeon, and well, I've I've been to his house on a few occasions. Um, Mark used to do fundraising for Cure for Life. Um back when um and you know, one of the things I loved about Charlie Tio was that he was the only person that viewed my father-in-law's condition with hope.

SPEAKER_02 47:20

Oh well, he's famous for that, right?

SPEAKER_01 47:23

He absolutely, and I really look, I've been told because I worked at Sydney Hospital and Sydney Eye Hospital at the time my father-in-law was diagnosed, and I had a neuroneurse in there basically tell me that there was a group of surgeons that were out to get Charlie, and it was and it was over things that were um a lot less traumatic than what actually played out in the end. It was about it was about um voting as a block, lobbying as a blog of surgeons, and he didn't want anything to do with it. I don't know if that's true or not. I haven't spoken to Charlie for quite a while. Haven't spoken to him since um just after the car accident, really.

SPEAKER_03 48:08

Yeah, yeah.

SPEAKER_01 48:10

But I I've I've Mark and I were saying the other day, it'd be interesting to hear what he thinks about me having um MND. He's another one that you could talk to. Charlie Woo, yeah, it'd be great. He um Charlie TO. I know, I bet um I know, I probably shouldn't do that. Charlie TO. You know, he's a he's a really good guy. He was a really good guy. You know, he used to listen to John Denver in theatre all the time. Like so, yeah, a bit of a nerd, but Denver's not nerdy. I guess you don't want to listen to ACDC while you're having you know your brain tumor removed. John Denver's nerdy. That's your mouth.

SPEAKER_02 48:57

Oh, it's a bit of bulk art portion, was it? Yeah, he used to do those fantastic specials with Olivia.

SPEAKER_01 49:05

Uh oh yeah, she was a special one. Yeah, she was really a special one. She was oh my god.

SPEAKER_02 49:12

So anyway, Lisa, we are going to round up for today. We are it has been so interesting.

SPEAKER_00 49:22

Has it?

SPEAKER_02 49:23

Yeah, well, it has for me. I don't know about for you, but it has for me.

SPEAKER_01 49:30

That's what we're here for.

SPEAKER_02 49:34

That's the job, Lisa.

SPEAKER_01 49:36

Glass your glasses are good. Are they new?

SPEAKER_02 49:39

Uh newish, yes.

SPEAKER_01 49:41

Yeah, they're green. Oh they're green.

SPEAKER_02 49:46

They're like dark green. I don't know if you can see very well. Yeah, they're green.

SPEAKER_01 49:49

Oh, yeah, yeah, they're green.

SPEAKER_02 49:51

They match my teeth.

SPEAKER_01 49:53

They they match the um the bartique behind and my teeth. All right. You want a hot tip about teeth?

SPEAKER_02 50:04

Tell me right now.

SPEAKER_01 50:05

Two drops of iodine in your water pick water. So brush your teeth, use a water pick, the best mouthwash you can possibly get.

SPEAKER_00 50:17

Wow. Okay.

SPEAKER_01 50:20

The only reason is because I don't use mouthwash or any of those things anymore. If you want to kill the bugs in your mouth, two drops of iodine in a cup of water.

unknown 50:30

Okay.

SPEAKER_01 50:32

Rinse your mouth out with that.

SPEAKER_02 50:33

Just rinse it out, don't swallow.

SPEAKER_01 50:35

If you don't swallow it, spit it out. Yeah.

SPEAKER_02 50:37

Okay. Important, important medical advice. Don't swallow it.

SPEAKER_01 50:41

Spit, don't swallow.

SPEAKER_02 50:44

Famous for it, Lisa. I am the Monica Lewinsky.

SPEAKER_01 50:54

Yeah. Can I finish with a big shout out to Kathleen O'Hara? No, I I just don't want to believe she's gone. Oh, Katherine O'Hara. Yeah, Katherine O'Hara. I I absolutely love, love, loved her. And um, and I just was heartbroken to see that because she is just one of the most clever, funny, and spontaneous comedians ever. She's a good and so humble. Yeah.

SPEAKER_02 51:26

Well, I haven't seen this kind of outpouring across my friend verse. Yeah. For anyone, like, sure, we all were sad about Prince, and we're all sad about David Bowie, and there are lots of people who have died that we were sad about, but this has just been extraordinary.

SPEAKER_01 51:52

But I think as well, Shits Creek got a lot of us through the pandemic. Right. And her in particular. And, you know, Dan Levy, I remember saying, like listening to him say that a lot of her costumes, their budget was so small on that show that he was on eBay buying her real cookture. And and then she would just become out in these personas. And how her accent deliberately was like so um, I don't, what's the word inauthentic? Um yeah, it was so effective, but not sustained, and that was a real thing that she deliberately did.

SPEAKER_02 52:35

Like a roller coaster.

SPEAKER_01 52:36

Yeah, yeah. And and some of those lines she came out with were completely ad-lib. Like was completely just off the cuff, and they just left it in there. Like the naming of the wigs, you know. It's like Olivia and Diane, don't get on with each other, don't put them there. So I actually think she was the backbone of that show. And um what's his name? What Dan Levy's Dan is Eugene Levy. He was saying that they had to convince her to do it because if you sign on for a pilot, inevitably inevitably you were signed on for the whole show, and she didn't want to commit. And they said, Look, come and do the pilot on the basis that we'll not force you to do the whole show. And she came on, they had so much fun, she just stayed. Yeah.

SPEAKER_02 53:26

Perfect.

SPEAKER_01 53:28

Perfect.

SPEAKER_02 53:28

So, you know, we didn't watch it during COVID. Jean only really sat down and watched it all last year.

SPEAKER_00 53:36

Oh, really?

SPEAKER_02 53:37

And I've never watched it all. I've just walked in and out of the room while it's been on.

SPEAKER_01 53:41

Oh, we'll have to watch it while over some fruit wine.

SPEAKER_02 53:48

No.

SPEAKER_01 53:53

Hey, I think you're gonna come down here and visit because um I am.

SPEAKER_02 53:57

Hang on, isn't that next weekend?

SPEAKER_01 53:59

The boys are coming down from the 12th to the 14th. Yeah, yeah, yeah. Yeah, maybe we can have a Valentine's Day lunch here.

SPEAKER_02 54:08

No.

SPEAKER_01 54:08

And you'll stay overnight and then what are you doing?

SPEAKER_02 54:10

You booked no no, I will I will come down. Yeah, hang out for a couple of hours and then come back.

SPEAKER_01 54:16

Okay. Yeah, you're on the 12th. Um, and I'm Friday to Sunday, right? Yeah, and I'll have um I'll have an infusion on the 12th and 13th, and then I'm done.

SPEAKER_00 54:29

Yeah. Right. For how long? Two weeks. Two weeks on, two weeks off. Two weeks, two weeks of of freedom.

SPEAKER_01 54:38

Yeah, two weeks of of not having gaffer tape on my chest. Anyway, I'm not complaining.

SPEAKER_02 54:46

You're allowed to complain. If if anyone's allowed to complain, Lisa, you get a free pass.

SPEAKER_01 54:52

Thanks, babe. Hey, do you know sorry?

SPEAKER_02 54:55

Two of my friends listen to every episode. Oh Kath Wapels and Michael Bulgo, so that's very nice.

SPEAKER_01 55:05

Oh, thank you, darling. Thank you.

SPEAKER_02 55:06

And I didn't know, I didn't know.

SPEAKER_01 55:09

Now I I think I had a might have told you last week, I had a woman here say to me, Oh, how do you know Porsche? Yeah, yeah, and listens to every episode. Yay! It's surprising. It's really, I think it's really good for me as therapy, so thank you. But I don't think you and I have had this chance to sit around and gossip ever. Ages. Ages and ages. I'm loving it. So thank you. I love you too. Aren't we lucky? We're lucky.

SPEAKER_02 55:47

To the moon and back.

SPEAKER_01 55:48

To the moon and back, sweetheart.

SPEAKER_02 55:50

See you next week. I love you.

SPEAKER_01 55:51

Bye. Bye bye, bye. And on that note, thanks for spending time with us. And also thank you to those of you who've messaged us to tell us how much you're enjoying it. This has been ALS to the moon and back. If you enjoyed it, please subscribe, like, and share the podcast. It really helps. Take care and we'll see you next time.