ALS - To The Moon And Back Episode 11

This week Lisa and Portia joined by Katrina Small, and honestly, this episode has everything.

Katrina shares her wild health journey — from trekking the Kokoda Track and picking up a gut parasite, to years later getting long COVID and feeling like someone had literally switched her brain off.

Not “a bit foggy”.
Not “a little tired”.
More like: successful professional woman suddenly wondering where half her cognitive filing cabinet has gone.

We talk about:
✨ the gut–brain connection
✨ long COVID and brain fog
✨ inflammation, autoimmune responses and microbiome health
✨ why sometimes your body knows exactly what’s wrong even when nobody else does
✨ what it feels like to not be believed
✨ and why asking for help remains one of the rudest personal growth exercises on earth

It’s a big conversation — smart, funny, honest, and full of those moments where you go, “Oh wow… that actually makes a lot of sense.”

Also featured:
poo transplants, medical gaslighting, women being called “difficult” when they’re actually just accurate, and a reminder that healing is rarely tidy.

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_04 1:05

Hello, everybody out there in ALS to the moon and back world. I'm Portia Turbo and I am with not one but two amazing women right now. And we have the lovely Lisa Wright, who is the uh the tour leader here at ALS to the moon and back. And today our special guest is Katrina Small. Katrina, can you introduce yourself, please, and tell us why you're here?

SPEAKER_00 1:33

Oh my God, I would love to. Um hi everyone out there in podcast world. Um the reason why I'm here today is I've actually known Lisa for a long time. It would have to be at least 15 years. I'm thinking probably longer. And we originally met through connections with foster care and had that real sort of connection and you know, was involved with her uh, you know, with Maggie's rescue that she's already spoken about. But how we recently reconnected was that um when you first recorded your first episode of ALS to the moon and back, I listened to it and I immediately texted Lisa and said, Lisa, we have to talk. We have to talk because whilst I'm not on the same journey as you in terms of diagnoses, I have actually been on a very similar journey with health issues that have affected my gut and brain that I felt, you know, many of us when we go through these health issues and there's no answers, there's no research, we kind of wander aimlessly. And one of the things that I had to learn through my journey that I wanted to share with Lisa was hey, I'm just going to give you the roadmap that I fumbled across and what I've learned. And maybe, maybe it'll assist you as well. So that's why I'm here.

SPEAKER_04 2:44

Wow. So what is your diagnosis?

SPEAKER_00 2:48

So my official diagnosis uh is actually long COVID. That's the best one that they have been able to uh define it as. I'm a bit of an a unicorn because what started off a long time ago, my journey in terms of really investigating the link between gut health and brain health was actually after I did Kokoda. I was one of these crazy people that did all these wild treks around the world. And I did cocota raising money for charity, but I got a gut problem. And when I got back, I suddenly realized within a few days that suddenly I felt demotivated. And I'm not one of those people I normally bounce out of bed first thing in the morning, and I started to feel demotivated and I started to feel that my brain was slowing down and you know I had other symptoms, which we won't go into because they're pretty graphic in terms of gut issues.

SPEAKER_04 3:34

You're welcome to gut issue graphic to us. We love that.

SPEAKER_00 3:40

Let's say acute joint pain and going to the bathroom. I'm not exaggerating, 15 to 18 times a day. Oh wow. So there were significant um issues with my gut. But alongside of that, I also recognized formerly I was one of these people that I had a very sharp memory. The work that I was in required precision around thinking very uh fast, but I could recall things quite accurately. And I started to notice that that became blurry. And this is, you know, 15, oh, 20 years ago, actually, when this all started, maybe 20, 18 years ago when I came back from Kokoda. So I started to look at this journey around, well, what is this gut health? And one of the, when I went through the specialist, the one symptom that they kept asking me, they didn't really ask me a lot about my gut problems. They kept saying, do you have brain fog? And I thought that was very strange. But that was one of the out of the 10 symptoms that they were asking for in terms of looking at what was going on with my gut, they wanted to know primary primarily if I had brain fog. Fast forward um to 2020. Um, was it 2020 or 2022? 2022, actually 2020, uh, when COVID hit. And I uh, like many in Australia, we I was very obliging. Well, actually, like many, yeah, I was very obliging, went with the government and got an injection. Now, I want to be very clear for all of those in the audience, this is not an anti-vaccination statement with what I'm about to say. But for me, I've been subsequently told that my body should never, with my own biomechanics, I shouldn't have ever had the vaccine because what it did after the first vaccine is my body responded in an autoimmune response and I actually got fluid around the heart. And we didn't know enough about the viral overload that COVID did. And so what happened was then, you know, went with two more injections, which was no problem. I didn't have any issue with it. But by the time I actually got COVID, which was a year later, for the first time, along with other known COVID symptoms, which are respiratory and all those other things, my brain stopped working. What? Yeah, it actually stopped working. Yeah, it's extremely it was like uh someone had turned off a switch. Um, and I remember, you know, you're navigating all the physical symptoms, which includes no air, the whole head stuff, but I couldn't think. And I remember trying to fungal my way through work, being brave. And I was, I remember distinctly being on it. And in that time, I was actually a CPO of a global IT firm. So what was required of me was very high thinking, very astute. And I remember being in this meeting, I'm very embarrassed to say this, but truthfully, I was in a meeting with an external lawyer discussing quite something significant. And I remember him saying to me, I don't understand what you're saying. And the shame that washed through my body was overwhelming. And I and I thought to myself, something's not right. And I remember even later when I was addressing the board in a board meeting, I couldn't do it. I just couldn't put things together. And it was literally day one before COVID was feeling great, was you know, I mean, apart from those, you know, aging, you know, peripose symptoms and all those. But the minute I got COVID, my brain literally, it was like someone switched a switch and went off. And so from that point, that began what was I would sort of looking back, a three-year journey in trying to understand what my body was doing and what was it trying to protect me from and what, and you know, there's been lots of you asked before what was the diagnosis? Well, in that time, um, I've had specialists say, Well, you have an autoimmune disorder called, um, I can't remember the name. See, my brain's not working at the moment. It's the blood clotting disorder. What is it called? Ah, I'll I'll figure it out in next 20 minutes. No, it's the one that causes DBT. I can't remember it. Anyway, okay. I actually got physically diagnosed with that. And I got diagnosed with a few other things as well. And at one point, it was 18 months ago that I had brain scans. So one of the things that I kept saying, and again, um, this is said with a lot of respect to the medical community because sometimes when things like pandemics occur, there's a whole raft of things that there's no precedent for. So people do their best. And you know, it's no different than getting diagnosed with something that you, your body is on its own individual journey and it behaves completely differently from everyone else. And so you need to navigate, well, what is my body doing with this set of symptoms? And so for me, every time I went to the long COVID clinic, I kept saying, I'm not getting air. And they said, Oh, it's asthma. I said, This is not asthma, this is a lack of oxygen. I said, I have been trekking in high altitude. I know my body well. I used to be a cart tartar, you know, trolley dolly flight attendant for 10 years. I know, yes. And I know what working at 10,000 feet feels like. I know what jet lag feels like. It kept going, this is not asthma, this is a lack of air. And I kept saying, Oh, but your oxygen saturation is well. But my body was telling me what was going on. And Lisa, this is your story. You knew that your body was telling you something wasn't right. And the repeated communications and what happens and what my journey's been is with the medical system, they are absolutely doing the best with what they know and what they are permitted to be able to do with you. And so at one point, I kept saying, look, I'm not getting air and managed this. And it turned out that when every time I went to my long COVID appointments, they were asking me what I was doing because I was researching. Uh, one of the things that I learned when I got back from Cocota and realized what I had was a parasitic infection called D-fragilis. And D-fragulus was a very unknown parasite that causes of other things brain issues. Really? People with D. fragilis, generally, it's very hard to diagnose. It can take up to seven years to get diagnosed. And the common symptoms are uh depression, anxiety, and they usually go down a psychiatric path where treatment doesn't work because they're not treating the symptom, which is a parasite that disrupts the dysbiosis in your gut and from there upsets mitochondria, which then affects how the brain operates.

SPEAKER_03 9:59

Yeah.

SPEAKER_00 10:00

But because I did research, and this is similar to Lisa, as soon as I know I've got something, I am there researching. I'm trying to understand well, what is this and what could it be doing, and what is my body telling me that's happening? Yeah. And so with D.Fragilis, instead of going down the path, and and had I gone down a GP path, and they would normally prescribe for parasites a treatment that, if I had taken it, would have strengthened the microbiome of the uh the parasite. Instead, I went down a different path. I researched, found someone that was quite progressive, and said, I'm not going to go down a traditional path. I'm actually going to go through this different path. And I went down a path through a clinic that at that time was doing what are called uh fecal uh uh fecal matter transfer, FMTs. Yep. Which in that stage, they're a lot more known now. This was 15, 18 years ago, and no one heard of it. It was an expense out of pocket. But I trusted that I sort of researched and went, well, this makes sense. It's an organodonation. The only way to recolonize my gut is to clean it out. So you go through this process of 18 months of literally killing everything in your gut, and you have to rebuild it through a transplant. But here's the thing within three days of starting a 10-day treatment, my brain came back. What? And I it's a 10-day protocol. And within three days from going 17 times a day, and I'm not exaggerating, anything I had went straight through me. I went from that to then having normal bowel movements within two weeks. Wow. And then from there over time. So one of the things that was fascinating when I went through that process is they also talked to me about what is needed to become a donor. And they said you need to be eating a certain thing. They will not allow people that have got any mental health issues to be a donor if you're on any anxiety or depression, because they understand the link that microchondria, if you have a donor that has these symptoms, then their microchondria may not be aligned to being healthy enough for a transplant. Now I'm not medical, I'm trying to put it in very layman's terms, and I'm sure there's been an audience that would know far more than me. I'm speaking morally from someone that's been through the process and observed what it's done to me and my journey. So then fast forward to COVID. So with those principles that I'd learned 10 years ago, what then happened is I went, well, hang on, I've got something going on with my brain. Yes, there's other symptoms. I think I need to go back to researching what is going on with my gut to assist what's happening with my brain. And so for 12 months, I followed what was called an autoimmune protocol. And within six weeks of starting that protocol, I noticed significant change in my symptoms. And that was only through diet. Now I'm not suggesting that this works. But is it only through diet, Katrina? It's it's learned, it's a it's an eating protocol that is medically monitored. Uh, there are some people on the internet that they'll follow it because they think it'll do great things. So mine was a medical protocol where you remove from your eating regime anything that triggers an autoimmune response. It is perceived, well, it is very, very difficult, but you're you're doing it for medical reasons, not for diet reasons.

SPEAKER_02 13:02

Yeah.

SPEAKER_00 13:03

But I found that within six weeks, my body was responding in a really healthy way. And I did that for 12 months, and all my symptoms, other than brain function, improved. So then I said, okay, this part now needs addressing. So again, did lots of tests. And Portia, going back to your first question about what was one of the diagnoses. Well, the second one that came through that was quite shocking, and this is the alignment with Lisa, is I had some uh numerous testing, brain scans, CT scans, you know, the whole the whole raft. And one of them showed that I had atrophy, which is shrinkage in three parts of the brain, including evidence that I had uh had oxygen loss, which is what I've been trying to say to Long Clinic, long COVID clinic all along. Now, these these the atrophy that's in my brain uh is concerning for a condition called posterior cortical atrophy, otherwise known as Benson syndrome, which is a terminal neurodegenerative uh disorder, mental like a neurodisorder. So once I got that information, it was like, okay, let's go a bit further, let's see, because you know, you and I reached out to community, there's only a I think 15 people in Australia diagnosed with it. Um mine was not a formal diagnosis. What it was is it was concerning based on what my um what my results showed. So I found one lady, and she was the one that introduced me to a protocol uh from a gentleman in America called Dr. Dale Bresden, who has had success with different protocols in approaching how to treat Alzheimer's. So again, I was going, okay, I'm really interested in this thinking. What has he discovered? Now, I do not have medical knowledge, I'm not going to get any of this accurate, but what I did learn.

SPEAKER_04 14:48

I like, I like the honesty.

SPEAKER_02 14:50

Yeah, we're not here to be doctors. We're talking about lived experience. Yeah.

SPEAKER_00 14:54

Yeah, but there was, you know, what resonated, I think, with his approach is he said, look, you know, there's five things that in his research have contributed to Alzheimer's. Um, three of which are really interesting. One is viral. Um, and a second one, uh, so one second one is exposure to mold or or mushrooms, like some sorts of mushrooms, and there's a few others as well, one's genetic. But I thought to myself, ah, one of those is viral. I'm wondering if this could be me. And what his book said, which was really fascinating, and again, it was an approach that resonated. He said, Look, the brain isn't dying, it's trying to preserve itself. So when it atrophies or shrinks, it's actually a protective mechanism against what's happening in the body.

SPEAKER_02 15:39

Wow.

SPEAKER_00 15:40

That sense of logic was fascinating because I went, okay, if I've got a viral overload, and I got told from, you know, even my neurologist was saying, this is viral. Unfortunately, there's nothing we can do. This is the viral overload in your body. And what it's doing is it's causing all of this to happen. And one of the impacts of that is on your brain function. Because I had testing done and parts of my brain function worked brilliantly. Interestingly, parts of where there's atrophy, that was where the brain function was not working well. Sure. So the next stage was okay, reach out. And I've actually found a practitioner in Sydney that is trained by this person and just said, look, here's my volumes of results. Is this something you can support with? And do you understand? And what then began 12 months ago was a new approach where followed the principles of this, and I'm now 80% back to where I used to be. So 12 months ago, um, I probably 18 months ago, I literally could not follow instructions. If I was in somewhere and someone said, do this, do this, do this, I would have to go. What was the first one? And it, and this is dot, this is medical diagnose where it was I had very, very CEO, not being able to chain three tasks together. Yeah, oh, I couldn't, yes, that's right. So working memory is what information do I remember from what has been discussed? How do I put it together and then what do I do with it? So I remember um it was 18 months ago, I was in meetings and I actually had to stop work because I recognized I actually can't do my job. I'd be in meetings and I could not follow what people were saying.

SPEAKER_03 17:15

Wow.

SPEAKER_00 17:15

I was going, you've just said something and it's not, it's not gelling. And then you've said something, and I'm now feeling very lost and very overwhelmed, and I can't piece this together. Whereas historically, I used to be knowing what everyone else said, I'd be five steps, ten steps, twenty heads at head, and I'd have a result and I'd be onto it and moving forward quite quickly. So I actually ceased work altogether. I went, I've got to stop this and now focus, um, found uh this support, and then I started this protocol. I got a I got a job that was basically at literally packing chicken necks. I went into butcher production because I went, I cannot put any pressure on my brain in a way that's not healing. And then I focused completely in the last 12 months on really just providing what my body needed to heal. And so the approach that I've been following is nutrition, but also supplements and supplements that does three things. One improves the microchondria of the gut to enable adequate nutrition that effectively helps your system create healthy pathways into the brain. So the I used to think, for example, that my gut used to be just a digestive system, just something that broke things down and pushed it out in different ways. But being ex-airlines and being ex-crew, uh, now I think that it's more like air traffic control, right? So my gut is kind of like the air traffic control tower. And it's telling, it's actually telling my immune system through leaky gut or permeable gut or my brain or even my mood what it does. So what started really as a gut infection 15, 18 years ago from a parasite um completely has changed how I approach how my body works and how my brain works. And through the approach that I've been in the last 12 months, and it's quite intensive, like in probably the same, same, but different with Lisa, you know, I literally take 30 tablets a day. And it's costly, but the thing is it's an investment in my health and it works. It's actually working for me. And so that's a little bit about my journey, and that's why I'm here.

SPEAKER_04 19:23

That's a big deal.

SPEAKER_01 19:25

So when you say 80% improvement, what would you say the biggest improvement is that makes you go, yep, you know what? I'm on that track out of this.

SPEAKER_00 19:34

Um, so the people that knew me really well, uh when I got COVID, they said it was like a similar to me, a switch turned off. And it was like I was kind of blank. Yeah. Um it was like literally there was a switch that turned off. What started happening is I I used to be very good at pattern recognition. Um, and it's you know, uh very, very good at noticing things and noticing patterns. And they noticed that I started to so I I when I was at my worst, I would have a conversation at night and I would not remember the conversation the next day. And I'd have to say to people, hey, if we have a conversation, you're gonna have to forgive me if I don't remember it. I know that you're used to me before where I'd remember things, but I may not remember things. And please, if I'm asking you, I it's literally I have not remembered genuinely. And the it's really hard because when you say that, people don't get it. It's an invisible problem. And it can sound quite repetitive, going, I really don't remember. And they're going, oh, but I remember it's like I I don't. So they are they believing this is neural inflammation? Like which Yeah, that's actually a really good question, Lisa. There are three parts. One is immune response and the overact, so it's an overactive immune system that then causes systemic inflammation. And so the autoimmune protocol was designed to remove anything that triggered both an autoimmune response and inflammatory response in my body. So interestingly, when I had the D-fragulus infection, one of the symptoms was joint pain, which is inflammation. And it was almost like rheumatoid arthritis. And that was one of the things that I learned that people that are undiagnosed with defragylis, they normally go down the path of you need to have psychiatric help for depression, anxiety, whatever else comes of it, or you get treated for rheumatoid arthritis or other things as well. You don't get treated for the source, which is that your the lining of your stomach has been um invaded by a parasite that has then ruined that layer that then causes leaky gut, that then causes gut dysbiosis, that then causes, you know, that's it's that kind of cascade. And that's why you have to do the restoration. But yeah, inflammation. And part of the atrophy in my brain is also due to the protective instance of we need to protect from this virus and we need to like protect from the response that this body is currently doing in terms of overactivity with the immune system and the inflammation. So absolutely. Lisa, to your point.

SPEAKER_04 22:01

So where did you, but where did you get this gut infection?

SPEAKER_00 22:08

So I was on Cocoa.

SPEAKER_04 22:10

That's where you got it.

SPEAKER_00 22:11

Yeah, and it would have been through water contamination. You know, you're you're you're literally track tracking cocoa, which is really hard. And you've got porters, and you know, you could be washing something in the stream, and the it could be a microbiome that because I was quite fastidious with hygiene. But often if it's it's in something that they've washed and you know it's it's just cross-contamination. Sure.

SPEAKER_04 22:32

Yeah. So it's like getting a salad in India and you forget.

SPEAKER_00 22:36

Yeah. Yeah. I've done that, Porsche.

SPEAKER_04 22:38

But we've all done that.

SPEAKER_00 22:40

You can you can wash your hands as much as you like, you can, you know, do everything, you can treat your water. But if someone's washed something and the plate is dirty or the fork is dirty, yeah.

SPEAKER_04 22:49

Sure, right.

SPEAKER_01 22:52

And I know Posha's going to jump in and ask something, but one of the things that is um standing out in your story, I've been asked probably half a dozen times if I've been tested for limes or if I've been bitten by a tick. But we live in a country that is actually in denial that we have it because they're saying we don't have the type of tick that carries the bacteria. Um so yeah, I've now made arrangements to get tested out of Germany. Lots of people with ALS turn up to have Lyme in their system.

SPEAKER_00 23:24

Yeah, actually, that's really interesting, Lisa, because I've got a girlfriend that actually has Lyme symptoms, and she has presented with a pathology that would suggest. So again, they say this, they say it's concerning for they don't diagnose. And that's exactly the same. Yeah.

SPEAKER_04 23:40

But but here's the problem here we Aussies travel. We all travel. So maybe you don't have the tick here, which I think is probably a lie anyway. But but we travel, we can get bitten by a tick anywhere.

SPEAKER_01 23:56

Yeah, we can. And I've been bitten by ticks multiple times here on the property. Um, I was sitting in a doctor's surgery before we moved out of Sydney with a woman, and she said the only place she could have been bitten by a tick that gave her Lyme, so which she had tested positive to was Sydney Park.

SPEAKER_04 24:14

Wow.

SPEAKER_01 24:15

Sydney Park. Yeah.

SPEAKER_04 24:17

Wow.

SPEAKER_01 24:20

Yeah, we had someone who um adopted a dog and was volunteering a lot at Maggie's, and her dog picked up a tick in Sydney Park and showed Limes-like symptoms, was like very unwell and achy and sore for a very long time. And but but yet, like my integrative GP, um, she is very, very wary. Like she she won't test me because she just feels that the difficulty that would be rained down upon her for testing for Lymes is not worth it.

SPEAKER_04 24:56

Oh, stupidity.

SPEAKER_00 24:58

I think though, Porsche, there's a bit of confirmation bias there as well. Like, I think, you know, there are a lot of people that might deny it because we may not we know may not be able to adequately advocate for yourselves, or the person that you're seeing may not be able to receive it, you know, because I can remember on my own. I looking back, um, there were many times where what I was actually saying was technically accurate with what what I've since found out to be medically diagnosed and and have the evidence. Yes. At the time, there's a filter that occurs in the medical community because of knowledge, that's all it is. Where they're going, well, I don't have the parameters to assess this, so therefore it must be this or this. It can't be this. Whereas I was, you know, in my situation, it's like, no, I'm very clear. This is my body symptoms. I know my body very well, this is what it's telling me. And it's, I don't want to use this word lightly because it's often parried, but there are times where it does feel that you're being gaslit, but it's not manipulation or intentional, it's just a lack of education or a lack of ability. Like, you know, I can remember my neurosurgeon was very truthful with me and he said, Look, we can't actually recommend any protocol for you unless it has been verified through many studies and there's medical evidence to recommend it. And he just kept saying to me, you may have to find your own path and find a way that works for you, but I cannot recommend it.

SPEAKER_01 26:21

I wish I found a neurologist that would say that.

SPEAKER_00 26:25

I think it was because I was quite direct and asked really, really direct questions.

SPEAKER_04 26:30

Have you met Lisa? I feel like she's the same.

SPEAKER_02 26:35

We have, we've been true. I think there's also reigning in.

SPEAKER_04 26:40

I think there's also a certain arrogance amongst the medical profession. Like I a couple of my girlfriends have endometriosis. And the fight the fight to get that diagnosed, even now, with all the money that's being thrown at it, etc. And that's common as mud. So you girls with something that is very niche, suddenly you come up against these walls because exactly what you just said, they don't have a protocol.

SPEAKER_00 27:17

No. And I remember when I started reaching out, um, I remember when um my MRI results show was concerning for PCA. Uh, I went to uh like I researched heavily. I obviously looked at research journals overseas. Um, it's extremely rare. And you know, every practice I went to, or people they said we've never seen a case.

unknown 27:38

Wow.

SPEAKER_00 27:39

Um, and and you know, even then they said, Well, look, you you're not displaying the symptoms to diagnose it officially. And I said, but what if I'm in stage one, which is no symptoms? I said, what if I'm there? And I said, Well, we can't diagnose until you're displaying this. I'm going. So I've I've actually taken the approach of assuming, okay, I'm I have I had symptoms, I did have symptoms, but not enough to diagnose. Yep. And the the the scans show X, they justified it by saying, Well, sometimes volume loss can be missed. And I said, Well, but it's pretty clear there's stuff going on. So I went, I'm going to approach it this way and tackle it now and get on the front foot. But to your point, Portia, around medical, look, if we use data and logic, unfortunately, the medical field up until recently, the research studies were predominantly men, not female bodies. Um, if I then add the layer of neurodiversity and how that affects how the body works, in terms of how the brain function directs what occurs with the body, if you're neurodiverse, there's a whole field of research out there. And then the role of hormones in terms of the different makeup of female hormones and the role of male hormones, there's a huge field out there where there's a massive gap in our population that are underrepresented in terms of how medical approaches are tailored for individual bodies. So, you know, I think I think in that regard, I have empathy for the practitioners that I see. If I recognize that they have, I I've reached their capacity, I don't blame them. I just go, okay, thank you. I've you you you now are at the capacity of what I need. I now need to find someone else. I now need to find someone else. I now need to find someone else. We just and I'm very I I have a lot of, I don't have any negativity. I just go, I'm very grateful for what I'm learning from you. And it's it's like dating, you know, you meet people and you go, I really enjoyed this, but you're not my match.

SPEAKER_01 29:37

I'm just I feel like I'm on the yellow brick road, Katrina. I get you. Like, you know, you go through, yeah, that was great. That's what I needed at that point in time. Um, but it's not working out now. So I just keep looking. And interestingly enough, if you go into it with enough curiosity, I think those things start to fall in your lap.

SPEAKER_00 29:57

And that's that's right. There's two parts. There's the curiosity, there's also a need for either yourself or someone that is in your world to be to advocate for you heavily.

SPEAKER_03 30:07

Yep.

SPEAKER_00 30:07

Because I remember being in some um some appointments, and I had someone there that knows me really well, and he had to actually reinforce and validate what I was saying because almost like the person wasn't believing me. And I think too, what I found is if you are articulate, yeah, and confident, you don't get believed.

SPEAKER_02 30:26

No, you don't really know, no shot.

SPEAKER_00 30:30

Come on, you do not get believed if you're articulate and challenged because I feel like difficult, you're being a difficult woman, yeah. Yeah, wow, yeah, that's that's an experience, it's a perception.

SPEAKER_04 30:45

So, Katrina, I have a question here. You were in the middle of brain fog and you were still able to navigate the thought process processes to make decisions. This is really interesting to me. How did you how did you do that?

SPEAKER_00 31:02

Because I went with my body. My body was telling me, I remember being in um, so um, what you're seeing is a summary of my experience. At the time, I would go to a meeting and my body was responding in anger or agitation or something with what was in front of me. And I my body was saying, This is not correct. And I and you would sort of try and then you go away and you'd have to, it's almost like an abusive relationship where you go away and you go, Did did that just happen? And did they believe me? But my body, and this is coming back to what Lisa started Lisa's journey, her body told her long before her brain did.

unknown 31:39

Yep.

SPEAKER_00 31:40

And I I trust my body implicitly, it gives me messages that my brain overrides. So what would happen is it wasn't my brain telling me what to do, it was my body, and my body kept going, this is not right, this is not right, and my body would feel frustrated. So therefore, I would then go, Well, what else? What else? And I naturally am solution oriented. So, you know, and trust me, I like at the worst, I would crash. Like I would I'd be able to work an hour and then I'd have to lie in the lounge for an hour, and that would be my lunch break where I'd literally, it was like a switch got to and my whole body would shut down and I'd have to sleep.

SPEAKER_04 32:17

Just so you know, that's how I've worked since I was born.

SPEAKER_02 32:20

Well done, you're probably you're probably really healthy. Probably very healthy.

SPEAKER_00 32:27

You know, I think though, is that we mask a lot, like we we have this coping role where we well, I actually won't say we because that's collective. For me, I felt that I had to be a certain way and I had to keep surviving and I had to keep keep um what's the word? I don't know, working, doing things, you know. And I so if you're on your own, you you need to resource yourself that way. So but it's my body.

SPEAKER_01 32:51

You also found yourself in some big situations that you hadn't planned for personally as well. And I I think when I look back, there was things that happened with me that I probably might I know there was one day where I was standing in the lounge room here, and Mike was standing up in the kitchen in our split level house, and he said, We can do this for another six years. And I was working seven days a week, and I remember just having this sinking feeling, going, Oh my god, I don't think we can. And yeah, but why what was it about me that was not going to tell him, no, I don't think we can, I think we've got to find another way, you know. But it's as a woman who is running her own business or whatever it was that I believed about myself, I had to keep going. Unless I was throwing myself under a bus, I didn't feel like I was living up to my expectations. And that's been a big, big one. And you know, when you start talking about what your body is telling you as opposed to your brain, um, in all of this, occasionally I jump in and listen to some some people like Joe Dispenser, and he talks about when you can get your brain and heart to align, that's when you truly get healing. And um, it's it's something to really work towards. It really is. I think you do that quite well, Posha.

SPEAKER_04 34:26

I don't know. I think all of me is a lucky accident. Seriously.

SPEAKER_02 34:33

I feel very lucky for your accident there.

SPEAKER_04 34:38

So Katrina, emotionally, how challenging was this period of not being believed?

SPEAKER_00 34:48

Oh horrendous.

SPEAKER_04 34:53

Yeah. Can you tell me some of your emotional reactions to the medical profession's inability to come with you on your journey?

SPEAKER_00 35:05

Yeah. Um, so my I felt a whole lot of so there was a it was almost like there was an inner conflict because there was part of me that was empathetic and curious. But then there's this part where you just feel betrayed and um uh the feeling of not being believed. And it's almost like you go back to this like you're an inner child where you go, it's like you're trying to tell an adult that something's wrong, and they don't believe you. And so therefore, over time you start to not believe it yourself. And I've got these lumps, yeah. And it was really hard because the people around me, they kept getting angry at me because I wasn't my own self. So it wasn't just the medical field, it was actually, and there's an I don't, I still get, I still get it. It's not that um yeah, honey, you don't blame them, but they when things are invisible and when it's a cognitive decline and you're not consistent, then people and the empathy I have is that people then don't know how to, they don't know what to do with you, and they don't know which version of you is going to show up today because you are inconsistent. So the feelings you get are guilt, you get um shame, you get fear, you get frustration, you get all this whole self-doubt world, self-doubt. Um, but the but that an emotion I also had was compassion, right? And that was the one that I I had to actually attach to, yeah, had to hold it more. But oh my goodness, like um there were people in my world that aren't in my world anymore from my experience of that at the time, because I realized that, and I think it's you know, to your point, Lisa, can we do this for seven years? I kept thinking, do I want this person in my world when this is and it's like I don't, and I know I'm okay with that without any negativity. It's just like I just need to have the people in my world that I value that are aligned and that will grow and that will be accepting of what occurs. Right.

SPEAKER_04 37:10

So you value and they reciprocate.

SPEAKER_00 37:13

Yeah, absolutely.

SPEAKER_04 37:18

They say you find out who the true friends are when you're sick or poor.

SPEAKER_00 37:22

Yeah, absolutely. And I was lucky, I've had some amazing people in my world, and I've had people that were by my side that absolutely backed me and supported me. Um, but the other thing too that I've learned, and I cannot underestimate this, is that you also have to allow people to help you. You have to allow and receive help. This is the biggest lesson that I have had, and I'm still not good at it. I still want to be someone that doesn't need help, and I'm not very good at it. So that is my growing edge.

SPEAKER_01 37:52

I feel sane. I feel because I'm the same. I'm absolutely the same. Really? Yeah, I find it really hard. Um, and I have to I find it hard to be the person that needs help in the room as well. And you know, Mark does an incredible amount of work around the house that I just can't do, and I have to point out things to him that might need to be done, and I find that really difficult. And we in recent weeks we've had the wonderful MAFs that you met on Friday night. Porsche came down and had dinner with us on Friday night.

SPEAKER_04 38:32

I did.

SPEAKER_01 38:32

Um, I can't believe you drove five and a half hours or whatever it was to do that, but thank you. And um, it was so much fun, and but Maps is here from Portugal and she has an NDIS number, and so she's been able to do a lot of things that were just taking up so much of Mark's time, and but Mark as a carer also really, really struggled to ask for help as well. He and he was like, I should be able to do all of this, and we can't. I think that's the thing. We we can't do it all.

SPEAKER_00 39:07

And I think I think what also um is the hardest thing to learn is actually getting clear on what we need. Like, you know, what is it that you want and what you is it that you need, and what do you then ask for? And there's this shame if we're not, I don't know, this world at the moment, we have to perform and we have to be this achieving, you know, functioning person.

SPEAKER_04 39:28

And we're not can can I say something? This is something that I think girls are not being taught. So in our first few months of economics class at school, the the first thing they drilled into us was do what you love, do what you can, and for everything else, earn enough so that you can have people help you.

SPEAKER_01 39:54

I feel like you went to a very top-tier private school.

SPEAKER_00 40:01

But you know what's interesting, Porsche? I I feel very strongly that I outsource what I don't want to do and I have no guilt. But I I agree with you. There's friends of mine, particularly single parents, where I've said, Look, please get someone to do this for you because the stress, if you let go of that stress, you're gonna be better off. Yes, you're not gonna have the money, but your well-being. And and they it's a very big conflict to do that. And it's like, oh my god, I outsource as much as I can.

SPEAKER_04 40:29

Yes.

SPEAKER_00 40:30

But that's different from asking for help.

SPEAKER_04 40:33

Yeah, right.

SPEAKER_00 40:34

Help means that you've you're getting something where there's not an economic transaction, and that's a bigger piece for women that we go, we don't want to be emotionally burdened or feel that there's some sort of transaction account going on where someone owes us, and that's different from paying for a service. I don't know, that's the perspective. So what are the origins of that? Do you think? I don't know. Do we want to go down patriarchy?

SPEAKER_04 40:57

Lisa, yeah, I think it's another boy thing because boys tend to. Yes, I'll help you out, yes, I'll boost you, but I expect you to be there when I need the same. Do women not get that?

SPEAKER_00 41:12

I think we do it emotionally. What do you think, Lisa? Like, I think we do it. We we're happy to support emotionally, but yeah.

SPEAKER_02 41:20

So the dog part, sorry.

SPEAKER_00 41:33

Yeah, I love how dogs pick up the energy of a human conversation.

SPEAKER_02 41:36

Oh, definitely, definitely, especially, especially is a bit of a love bug.

SPEAKER_01 41:42

Um, I think that I've had women offer all kinds of assistance, and it's really surprised me. There's been people who I thought would have been there who just haven't. And then there's been there's been women like there's one woman that comes up here every week, Marion. She offers to exercise my dogs, um, take them out. Well, and she'll stick a head in the door and sit down with me for 20 minutes and have a chat, and then she heads off. Now, that to me is extraordinary, but um, I've got other I've got other friends that they might just send me a text message and it it's great. So it's not a physical thing because they're not physically here, but you know, that then there's other people that um I thought that I would have been able to call on for more and they're not available. And I'm not like Katrina, you've just got to approach that with compassion because um I'm not living in their skin and I don't know what's going on for them. But um, I've also learned that I've got to release that level of disappointment that I might feel because it's not about me, and maybe it's just not about them, it's just the situation. You do learn to have a lot of um compassion's the word and gratitude for what what does turn up on your plate. Like I'm I went to bed on Friday night, grateful that you drove down Porsche.

SPEAKER_04 43:13

Like I that was so good though, huh?

SPEAKER_01 43:16

It was, it was so good. But in my brain, before I go to sleep, I try and rattle off three things that I was really grateful for in that day. And and that's and that's where the healing is, you know. That's that's where we start to really realize just how much we do have rather than what what we might have feel like we've lost, you know. Like I've had I had someone say to me last weekend we had an agility workshop, and one of my dogs, Pocket, was out there and she's can trained in a completely different way to how my friend who ran her for me was running her. And she was out there having a ball. She didn't know she was taking every wrong obstacle under the sun. And I and she was wild. And I and somebody said, Oh. It's such a shame she's forgetting agility. And I thought she doesn't know. She doesn't care. She'd go inside going, oh my God, I took the backside of jump 10. Oh, well, what am I going to do? She just doesn't know. And I think we need to approach our lives a bit more like it. But one of the things that really has resonated in this conversation is that I see Jackson, who I've talked about before, over at Dulich Hill, and Jackson does a lot of kinesiology. And one of the things that came up last Wednesday has come up before, and it's disappointment in the doctors that I see. I have expectations of them, again, probably a little bit like my friends, that I'm expecting them to fill a gap that they're just not going to be able to do. They live in a paradigm that has told them from the minute they started medicine that this is how it's going to be. And as much as I really loved meeting the prof that I went and saw on Wednesday, he again was telling me, oh, you know, your integrative doctor will just be trying to take your money and those things don't work, and the gut-brain biome issue is a fad. Um, and I'm sitting there going, well, how come major universities in the US, like Duke, has just gone through the ethics of doing complete um gut biome transfer um as part of a study in a large group of people living with ALS? And and yet he's got good information. He's a kind, compassionate man who has dedicated himself towards finding a cure for ALS. What they're not saying is that it's not going to be a magic bullet, it's it's a holistic approach because it's happening on more fronts than just one pathway.

SPEAKER_04 45:57

So Lisa, this goes right back to what Katrina was saying earlier. You have to say thank you very much for your information and go look elsewhere.

SPEAKER_02 46:09

Yeah, yeah.

SPEAKER_04 46:10

Now we have come to the end of our time together. No, Katrina Small, you've been delicious today.

SPEAKER_00 46:20

Oh, it's so lovely to be here and share the love.

SPEAKER_01 46:24

Yeah, I'm so glad you're here too. Thank you for all making it on a Sunday morning at 10 o'clock. Wow.

SPEAKER_04 46:32

We're here.

SPEAKER_01 46:33

Very impressive. We might have to go into the other half of this because I feel like we just touched on the uh tip of the ice, but I agree.

SPEAKER_04 46:39

Katrina, please come back and talk to us again.

SPEAKER_00 46:42

I'd love that. Thank you so much for having me on your show.

SPEAKER_04 46:44

Thank you. And Lisa, I love you to the moon and back.

SPEAKER_01 46:48

I love you to the moon and back, honey. And um, happy travels.

SPEAKER_04 46:53

Thanks, mate. See you when I'm back.

SPEAKER_01 46:54

Okay, bye.

SPEAKER_04 46:56

Bye y'all.

SPEAKER_01 46:57

Bye. 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.