Walking the Camino with knee osteoarthritis

ABC Listen. Podcasts, radio, news, music and more. Australia's always been the lucky country. Sunshine, beaches and that one magpie that always seems to know where you live. Yeah, get away from my chip, please. Luck might not cut it anymore. So can we make our own luck and turn this complicated world to our advantage? That's our global roaming summer season. Can Australia surf the world's chaos?

without wiping out fresh new episodes all summer search for global roaming on the abc listen app or wherever you get your podcasts I know you like to talk about your ailments. Is that fair to say? No, no, no, come on. You like asking about them. Do I? Can I ask about them or do you just raise them? It's hard to know. I don't know. Well, let's let that go through to the keyboard. So what do you want to ask me about this week, Priya? Do you have any osteoarthritis going on? Hips?

Funny you should say that. The answer is yes, I imagine. Yeah, yeah, it's my knee. Tell me more. How long, how does it affect you? I was cycling to school at the age of 14 in Scotland in the snow, fell off the bike and damaged my knee. And the knee kept on jumping out, the kneecap. And eventually I had it operated on at the age of 18.

The surgeon said it's a great operation for stopping the kneecap jumping out, but you'll have osteoarthritis by the time you're 60. And I had it by the time I was 40. Oh, Norman, so you get knee pain. Well, interestingly, everybody around me has been saying, you've got to have a knee replacement. Got to have a knee replacement. Okay. Do you? Do you need a knee replacement? That's the million dollar question. Well, I don't think I do.

And I've managed to hold it at bay by doing stuff to my knee and to my leg. I've discovered all sorts of interesting things about rehabilitation of the knee. And there you go. That's exactly what we're covering on The Health Report today. That's your story. And actually, even despite the pain, you want to keep moving. That's the kind of interesting paradox. It is. We'll have much more on that today on The Health Report. I'm Norman Swan on Gadigal.

Land. And I'm Priya Alexander on Wurundjeri Land. Also on the show, we have been talking a lot about weight loss drugs and their benefits from things like heart health, kidney health and even osteoarthritis benefits. But they're not without their risks, especially when we consider people with eating disorders potentially getting access to these medications. The first few months of stroke recovery can be the most important. We'll hear how two friends navigated rehab in different ways.

So in this summer series of The Health Report, instead of a regular news section, we're talking about... what was running in the news last year. And it's hard to avoid what was running in the United States because it's going to have an impact on us all. And it really started with the installation.

of Robert F. Kennedy Jr. as Secretary for Health and Human Services. And it's worth saying that we did cover Make America Healthy Again and that movement a couple of weeks ago in the summer series, but today we're really trying to focus on... RFK's war on autism. And I'm using the word war because there has been very military-like language used in terms of this medical diagnosis. But is it fair to say that possibly one of the biggest things that happened last year was...

the claims that were made around paracetamol use in pregnancy, do you think? Certainly generated a lot of angst in the community. You know, just to illustrate the interest that grew is that we went to air or went social, if you like, in the ABC. about half an hour or so after there was the infamous press conference from President Trump.

I think we got some of that 1.2 million downloads for that in a very short space of time because people were just panicking. So there's two things going on with the whole autism story. Well, more than two. One is...

They are still blaming the Bezos-Monts rubella vaccine for... an increased rate of autism and there's not a shred of evidence to back that up despite millions of dollars worth of research being done which could have been spent on something else and it was all based on fraudulent research in Britain. In November last year, the CDC updated one of its websites on vaccine and autism and some mind-boggling information was popped.

on there because they updated things to say that there wasn't enough evidence to suggest that vaccines do not cause autism and that previous research had been ignored by health authorities. So there was also an asterisk on the website next to the statement, vaccines do not cause autism. And the asterisk is an unusual thing because it's there because of a deal that was done between Republican Senator...

Bill Cassidy at the time of RFK Jr.'s nomination, where Bill Cassidy, who is a physician in the US, said... look, I just need that statement to remain on the CDC site that vaccines do not cause autism. But now there's an asterisk there and there's information there that looks quite reliable when it's in fact not. And the asterisk leads you to a comment that it's only there because of a deal done with the senator rather than them wanting to have it there.

And also the statement on the site saying that there isn't enough evidence. There is. You can go to places like Cochrane Reviews. There are Danish studies that have looked into this. There is no evidence to suggest that vaccines cause autism.

But the fundamental premises are wrong too. So they talk about this as one of the biggest public health crises of the moment, that we've got an epidemic of autism spectrum disorder. There is no epidemic of autism spectrum disorder. It's just simply not the case. And the language has been incredibly stigmatising. It's perpetuated a lot of guilt and shame and stigma in the community. People feeling like they or their children are a burden because of their neurodevelopmental diagnosis.

And I've had many patients share how devastated they have been about the discussion in media and community and from the Trump administration. And RFK Jr. I mean, just talking about... how this is a disastrous diagnosis, as if it's the end of a child's life. So here's the facts. The prevalence of autism spectrum disorder has gone up a bit.

largely because they've changed the way they define the condition. So the diagnostic categories have changed. So there used to be a category called Asperger's syndrome. It really wasn't a separate condition. It also was highly stigmatising and it was just much more sensible to do what the facts were pointing to, which is that kids who were milder on this spectrum were part of the same spectrum. Yeah, it's an umbrella term now.

And it's actually good news that the prevalence has gone up a bit with diagnostic rates going up because it means that more kids are being diagnosed and helped if indeed help is available. That's part of the problem is getting help available. Yeah, there might be a little bit of over-diagnosis here and there, but the reality is that expanding the diagnostic category means that kids who are not recognised as having problems...

I recognise it's having problems. We're better at detecting it. And we now actually talk about these diagnoses in girls. For a long time, girls and women were completely excluded from consideration of any diagnosis like autism spectrum disorder or ADHD. That is changing. That's a good thing. And so just going back, though, the paracetamol story had so many issues with it because Trump told people or women to tough it out in pregnancy. That was the actual quote. She got a fever.

Tough it out. If you've got pain or favour in pregnancy, tough it out. I mean, goodness, we explored. during last year's shows, the medical misogyny ingrained within a comment like that and how pregnant women are already so vulnerable, trying to do no harm. And in Australia, paracetamol is a Category A medication. It's been taken by a large number of people with no proven harm indirect or direct to the fetus, to the baby. So we...

Say to patients, I say to patients all the time, if there's a medication you need to use for your headache, for your fever, we know fever can have risk in pregnancy to the mother, to the baby, yes? Yeah, so, I mean, that's right. So the problem is fever. And if you've got fever in pregnancy, you don't tough it out. You treat it, and you treat it with paracetamol. So there was a large study in Sweden, 2 million person study, which showed no relationship between paracetamol and paracetamol.

an autism spectrum disorder, and there's been a recent review of the evidence which confirms that. So you don't take any drug in pregnancy unless you have to, but here you do not want a fever in pregnancy, so you take the paracetamol. It's safe. It perhaps got even more strange...

in about October last year because RFK Jr. then started to link circumcision in boys with a higher risk of autism and then tried to link it again to paracetamol. And the papers that RFK Jr. was referring to were actually not peer-reviewed and funded by a not-for-profit group that was... led by someone who promotes paracetamol exposure to autism in early life? It would mean that every child in the Islamic world, every Jewish kid...

Has a higher risk of autism, yeah. I suppose he backtracked a little bit, didn't he? He did, because at a White House Cabinet meeting after the world had erupted and medical bodies, peak medical bodies, had just absolutely erupted at this declaration. that paracetamol was problematic in pregnancy, RFK Jr said, it's not proof. We're doing the studies to make the proof. It's even more chilling. It is. It is actually even more chilling. But look, there's a real vendetta here.

There's really stigmatising language, military language being used about a medical diagnosis and I think there are a lot of people who have felt that last year was a really quite traumatic and heavy time if you have a diagnosis. in the neurodevelopment space or a child or you're a caregiver of someone. So it was a tricky year.

And why are we talking about it on an Australian health show? It's because social influencers are global. You're being exposed to this information all the time. And elements of that Maha movement, some of which are honourable and... to be respected in terms of back to Whole Foods, come here, but you've got to watch what goes along with it. And we are seeing issues with our vaccination coverage rates.

in children, in adults. We know people are confused. There's a lot of misinformation, some hesitancy. So I think all of this does have an impact on us here on the ground. On ABC Radio National, you're with the Health Report.

I know knee osteoarthritis is a topic close to your heart. No, it's close to my knee. It is close to your knee. But very interesting pain education research. Yeah. So pain is an odd phenomenon. because it happens in your brain. You might feel it in your knee, but it all happens in your brain. So it's not imaginary, but the whole pain pathway goes from your knee to your head, any pain.

And what goes on in your brain makes a big difference to your perception of that pain. And a group in South Australia has actually tried to find out what happens if people are given a deeper understanding. of the brain stuff that's going on when you're experiencing pain.

And they've chosen knee osteoarthritis as an example so that you can get on with rehabilitation. And one of the problems, Priya, as you would know, particularly with knee osteoarthritis, but any pain... is that the tests that you do can make the perception of pain worse because you think, my God, is that what it looks like?

And that was Peter Ninn's experience. Yeah, you go through the consultation with x-rays and you see all these anatomical models with knee joints that have got red marks all over them and you're starting to think, oh, this is not so good. I really don't feel that great. Tasha Stanton, welcome to The Health Report. Thank you. Thanks for having me. That was Peter Nins, who's gone through your program, but it illustrates just how scary the diagnostic process can be for knee osteoarthritis.

Absolutely. Many times when people are getting that diagnosis, they're being told words like degeneration, like bone on bone. And as he mentioned, they're seeing these terrifying models where everything looks red and angry and inflamed. That becomes what we picture when we're thinking about our knee. And so I think as health professionals, actually, we could do a lot better of a job at this really by, you know, starting to remember that there's many things that are still working very well.

strong, very resilient within a knee, instead of often just giving these big red scary things. So what's the pain science behind this education program? Or is it an education program? I mean, or is it cognitive behavioral therapy? What is it? Yeah, it is an education program and it's paired hand in hand with an exercise based program. So it takes the principles of pain science into how we engage with exercise. But really a lot of what goes on behind this is understand.

quite deeply how pain works. why we might experience different times where we hurt more, but then also understanding if there are multiple contributors to pain, that we can explore those within ourselves, within our lives, and actually take more control over what we feel and what we're... able to do so be more specific about what are the common things that if you like make our pain worse because of our belief system sure so i guess our understanding a contemporary understanding of pain is that

Ultimately, it's a protective response. So common things that could contribute could be common to many pain conditions, such as if you're under financial pressure, if you're around someone that actually you don't really like being around, if you are. hearing things that sound really scary, like degeneration on an x-ray.

All of those things contribute to our internal representation of our knee, our knee in the brain. And ultimately then, all of these things can contribute to, worsen or improve the pain that we feel. So in a sense, what you're saying is you don't create it consciously, but there's noise in the brain which amplifies the pain. That's right. I mean, this idea that pain can shift or change isn't something new. But I think what is really new within arthritis is...

There's often been a misunderstanding, I think, generally of this condition as being just, you know, this degenerative condition that's only going to get worse, when actually that's not necessarily what the data show. What do the data show? I mean, one of, I think, the biggest things is our understanding of cartilage is actually really important to this story because...

In arthritis in particular, it's seen as this, you know, bone on bone problem. And that's why it hurts so bad. And there's no cartilage left or it's damaged, degenerated. And it does make you think, wow, I really shouldn't overuse this joint. I should stop what I'm doing. told is oh god looking at your x-ray it's bone on bone that's what you're often told yes it's a very common thing and first of all

Nothing is ever truly bone-on-bone. You always have a little bit of cartilage left in there, and you also have this luscious lubricating fluid that means that... things can still move around. You're not rubbing literally bone on bone. And I think one of the problems that comes from that narrative is then it makes you feel like you shouldn't be doing much. But yet if we look to what happens with cartilage when we don't load it, actually it...

becomes less healthy you look at astronauts that go into space they come back and their cartilage is less healthy and it's because loading is required to actually nourish our cartilage it doesn't have a blood supply so how it gets its nourishment is through load

So what do you actually do in the session? Do you simply teach people about how they're perceiving pain and why? We try to make this very patient-focused. So understanding the things that... they're having challenges with, the things that they might want to do, but then also what their understanding of their condition is. So it is actually asking a lot of questions to understand if there might be different beliefs, different knowledge, different understanding that is

first of all, either blocking them from undertaking something like exercise, but also that might be a contributor to pain. I mean... Anytime that you start to exercise, many people, for example, will get a flare-up of pain or stiffness or swelling. And for many people, that's taken as a sign, this isn't good for me. When in fact, when we kind of understand how pain works, what we realize is that...

There's quite good evidence in osteoarthritis that the pain system is oversensitive or hypersensitive, meaning that it's reacting to things that isn't necessarily damaging or dangerous to your joint. But in order to get it less sensitive, you basically have to give that system a nudge. You have to give it a stimulus for change, and exercise is great for that. But that allows us to start to reduce the overprotectiveness of the system.

So there's knee rehab programs to try and divert from knee replacement or delay knee replacement, but they don't often include this sort of conversation. That's right. So many of them are really good at getting people moving a bit more. But I guess where we think it probably can be quite important is if we don't have a strong understanding of what we do think is happening when... maybe things go off course.

That can be something that it goes well and they continue to do it as long as there is no flare up, no anything. And then when that happens, it just stops. So not only does understanding help with keeping going, but it also in and of itself. self can be a direct contributor to the pain that someone feels when we change our view of something from thinking, oh my gosh, exercise is probably bad for my knee. I can hear it making popping noises. It must be terrible. And we reframe that too.

This is actually the best thing that I can be doing to nourish my cartilage, to be helping my muscles become stronger, to be making myself more healthy and fit. There are a number of short-term objectives that I set. And I then needed to describe some sort of aspirational goal without really giving it much thought. I said that I'd like to walk the Camino de Santiago in Spain. In total, it's an 800 kilometre.

The physio said, look, there's no reason why you can't do that. And that was like a light bulb moment. We've heard Peter Lynn's story where he ended up doing the Camino Trail in Spain. which is quite extraordinary given that he was referred for knee replacement for bilateral knee osteoarthritis. What is the evidence at scale that this works? At the moment, we've done pilot work testing the program and we're currently just running and finishing a large...

randomized controlled trial that's evaluating this type of intervention. I think what's going to be really critical to understand is how we might need to personalize our interventions to people. For some people, it can be enough just to have a trusted medical professional say, you need to move a bit more, it's safe for you to do.

perfect, but we have to give people that opportunity. And then for others, I think sometimes you need to have that deeper understanding, particularly if there are some fears that have been developed about moving or if you've never moved before. interpretation of having a bit of pain or stiffness or soreness that occurs is quite novel to you. One of the important things when you're doing something like this is expectations.

So one expectation would be, well, I'm going to be pain free. I'm going to be jumping up and down, running four minute miles, rather than what might be more realistic, which is actually you're still going to have pain, but you're going to be mobile and fitter.

And you can manage the pain. It's not going to disrupt your life. I mean, what expectations do you set here? I suppose what we've tried to do is we try to set mini goals with people because I don't necessarily want to rule things out. I think a reasonable expectation is...

to think that with your daily life activities and the goals and activities that you would like to do, we would hope you would be able to get to a point where you are experiencing minimal pain while you're doing this. It's definitely manageable. that you're not having those repeated instances where you're being laid out for two or three days at a time. So Tasha, let's hear how Peter went on the Camino Trail.

There were some pretty tough days on the Camino. I had one day of 32 kilometres where the last kilometre was on loose shale rock. You know, I was going sideways and my knees were just like jelly and so I'd stop. and there'd be sorts of tremors happening. But, you know what, it didn't bother me.

Well, it wasn't perfect, but it's changed his life, Tasha. Yeah, it really has. And I think it's such an important message for all of us to understand that we need to shift our mindset about osteoarthritis as being this condition that's only going to get worse. to something where improvement is possible and maybe even one day recoveries on the cards. Associate Professor Tasha Stanton, who's a clinical pain neuroscientist at the University of South Australia.

And before that, you heard Peter Nins, who amazingly, Priya, was off on the Camino Trail and did it quite well.

Last week on the show, we spoke a great deal about the benefits of GLP-1 medications. These are the diabetes medications, injectable, that also have the benefit of weight management. And we're starting to now understand more about the potential risks in people who might have an eating disorder. Weight stigma is a true and real entity within healthcare.

And often clinicians don't realise that someone who is of higher weight, someone living with overweight or obesity, may actually have an eating disorder. Restriction, purging, overcompensation with physical activity, other methods. So the question is, are we potentially doing harm with these GLP-1 medications? Should everyone on these medications or who's being prescribed them be screened for an eating disorder?

I spoke with an expert in this space, Dr. Sarah Trobe, who is the National Director of National Eating Disorders Collaboration. What we know is that over 50% of people with an eating disorder are of higher weight. So we know that there is a fairly high risk that people with a current eating disorder are going to seek support for weight loss and we know that people are more likely to...

weight loss than eating disorder treatment so we've got a real complex picture I guess which is being painted at the moment so if someone is already experiencing an eating disorder then without proper treatment, whilst the new weight loss drugs might help with.

their health depending on what we're actually trying to target. We don't have any evidence to suggest that it's actually targeting any of the underlying mechanisms that the eating disorder has. And so what we're doing is causing further harm because someone has a really complex mental health condition.

And what we're focusing on is a number on the scale rather than really looking at the holistic health. The other pathway, though, is that someone might come in who is wanting to lose weight for a multitude of different reasons that our society has created.

And they may then develop an eating disorder by going on the weight loss drugs. Weight loss in and of itself can trigger an eating disorder. So lots of different ways in which an eating disorder may be exacerbated or triggered in the first instance. When I explore someone's relationship with food and body, often the patient hasn't realised that there's something there that we detect in the consult.

So should we be screening everybody? And is the health profession part of the problem here, given that some may not consider an eating disorder in people who are of higher weight? Absolutely. And it's not even in this instance, Priya. So thank you for screening and being able to have those conversations. But what we know is that eating disorder information isn't actually included in the tertiary curricula for medical practitioners. And this is something that we're working really hard on.

hard on to change that for the future workforce. And we know that GPs often struggle to talk about food and bodies and weight. And so really being able to provide them with the tools, but making it a non-negotiable that we should always be screening for eating disorders in any of our high-risk groups and those of high...

weight or those seeking to lose weight are absolutely a high risk group. So universal screening is really important and there's great screening tools available. And just come back to this personalized medicine. That's the idea of saying this person in front of me is more than a number on a scale. What is going on for this person's background, their mental health?

their environment and their holistic wellbeing rather than saying, oh, there's a number on a scale and we need to fix that number on a scale.

So if someone does have a history of an eating disorder or an active eating disorder, goes in seeking one of these medications, is it contraindicated? Is it an absolute blanket no? What does it look like, the process? So this is where we just have to talk about person-centred care and multidisciplinary care where the whole of team is talking together. So that means the GP who may be managing the whole care team, we do need eating disorder treatment. We can't ignore the eating disorder.

If we think about the eating disorder and then the impact that it has on someone's physical health, then by adding a weight loss drug and then ignoring that is really, really harmful. And we don't know exactly the risk that that will have on the person because it is really complex.

how all of those different factors might interact but if it is atypical anorexia which is when someone has anorexia they've come from a higher weight they might become still in a higher weight category or an average weight Absolutely not. If they continue to lose weight, they are going to experience the same risks as someone with a low weight anorexia. So that needs to be a blanket no and a contraindication.

What needs to happen for someone who might be experiencing binge eating disorder if they have complex physical cold-curing conditions, which the doctor has determined that weight loss is definitely needed? and that's a really complex question, which the whole world is trying to solve, then again, the decisions need to happen together in the team to say, we can still do eating disorder treatment.

But we need to really explore the impact that that weight loss medication will have on eating disorder treatment. Regular eating is a core part of eating disorder treatment and weight loss medications might actually stop that from being able to happen. So contraindication for atypical anorexia and really we need to focus on does this person need to lose weight via weight loss medications? Or can we look at holistic health behaviours and eating sort of treatment together?

What research do we need here? Because as you said, these medications have come onto the market very quickly. There are lots of potential benefits for some, which we've also explored on the health report. What are we missing? Look, one thing at a basic level, Priya, is we need consistent and validated screening tools for eating disorders in people with higher weight.

The other thing that's happened really is the research that we have on the weight loss medications hasn't necessarily involved people with eating disorders or focused specifically on the eating disorder. They might be looking at other things such as diabetes or... or blood pressure, or other physical experiences for that person. So actually we need targeted research. Sarah, diet culture is something I think more and more of us are rallying against actively.

It is very insidious. It is pervasive. It's very complex, this belief system that's false, that we're taught to buy into about thinness being the best, this moral hierarchy of bodies. or weight loss being good, lots of myths, very difficult to unpack as someone who grew up in the 90s. Have these medications worsened weight stigma for some?

and potentially perpetuated some of those problems that we see within diet culture? Look, possibly. I think what really needs to be broken down here is our understanding of weight. that weight stigma comes from this really simple assumption that weight is under someone's control. And we know that that is absolutely not the case. Weight is impacted by so many different factors, including our genes.

Our bodies have been pre-programmed to be a certain weight. And so all of these different factors around genetics, biology, our environment, and we look at environment in terms of our lifestyle, food quality, food insecurity, all of them. factors need to be really considered when we're looking at someone's health and what their weight should be, rather than thinking that we should all be the same weight, which is absolutely not true.

So I guess the risk for weight loss medications is that it can buy into that idea that it's under someone's control. So if you take a medication, we can control the weight, which actually then goes against our pre-programmed body. This is how it's been. promoted as a wonder drug to fix this thing that is inherently someone's fault which is absolutely not. Sarah for people, loved ones.

of someone who might be on these medications, who start to notice perhaps some features of an eating disorder or body image concerns, what can they do to best support the person? Sometimes this feels hard, but having a conversation with your loved one is the best first step, is saying, look, I've noticed this. I'm really worried about you. Can I help you to talk to your GP about these concerns?

Knowing the information, saying I know that the development of an eating disorder is possible and you're at higher risk because you are on these weight loss medications or attempting to lose weight. At the same time, then if we can support that person to get to a GP, because the GP, whilst we want to screen at the commencement of weight loss medications, but it needs to happen throughout treatment as well. Being able to support that person by being involved in their care.

is really really helpful if you're needing advice on how to start that conversation there are some really wonderful tips and tricks available on our website And you can also contact the Butterfly Helpline to have a conversation with the counsellors who can guide you through those conversations as well. But the first is just showing that you care, letting them know of the risk and connecting them in with the professional support.

That was Dr Sarah Trobe, who's the National Director of National Eating Disorders Collaboration. On Radio National, you're with The Health Report.

Recovery from stroke can be grueling. In the last two weeks, you've been hearing from Kylie and Gillian, friends who coincidentally both had strokes and were left with similar disabilities. In episode three of A Stroke of Luck, they reflect on their recovery experiences and the ongoing promise of miracle cures. They decided they'd take me out to the park for my first time.

So I was put in a wheelchair and Chris took me over to the park. My best friend Amanda turned up and she was... waving to us and i was getting myself organized to walk up to meet you when i heard a woman yelling out help he's got my bag help and i've turned around and there was a man running towards me with a woman's bag He's got my bag. He's got my bag. And Amanda being a police officer went in pursuit. Chasing this man down the road wearing my singlet top.

shorts and thongs I grabbed hold of him he threw me off and I lost a thong I think I've thrown the other thong in the process I was running down the street barefoot so then Chris jumped on him And Amanda quickly came up with some cuffs. I can remember there were council workers having their lunch nearby and one of them, as I'm sitting on this bloke, telling him he's under arrest, trying to call Triple O and everything else going, you right, love, as they're eating their sandwiches.

And then they both looked at each other and thought, Cody! And I was sitting there in the wheelchair watching all of this with great pleasure. That was pretty much the type of recovery I had. Really good times with really good friends. And Amanda and Chris in particular didn't treat me like I was any different.

Well, once you got into rehab, yeah, start off strong and then it just seemed to slip. What I put it down to was the roles of the physio, the occupational therapist and the speech therapist. sort of bureaucracy gets involved and says, we've got all these three professionals, but we don't know how they should work together. I want to say the physio does lower half of the body, OT does the upper half, and the speech therapist can manage everything.

In my view, that was just the worst set-up ever because where you wanted work around your arm, the upper body... The OT wasn't interested in doing that at all. They just wanted to see if you could butter bread and make it. Yes. It was just focused on getting you home and what can you do with your good arm. I decided that I'd come to every single session you had.

That was pretty much a full day every day coming to all your sessions. I felt you were my hero. You were a miracle. I was the biggest pain in the ass in that class. Completely, because they weren't getting away with anything. I was just like, what do you mean you haven't seen this? Come and look at it, we'll do it now. We're not interested in boiling kettles. Let's get something going to help Jewel's shoulder.

I was like fully prepared to totally recover and work until I am fully recovered. It must have been about halfway through this year, so two years later. that I had to start to accept that the disabilities that I have are probably pretty permanent. And that's really hard. Because in the early stages, you go through the, well, this will cure you and make you better type of thing. And everybody puts in their five cents worth.

And I remember going on all sorts of escapades that would cure me. I remember I got Botox injections in my arm. They were so painful. How ironically, I only had Botox last week. So I'm still well in it, yeah. But it's like there's a world, particularly on Facebook. I mean, Facebook didn't exist when you got to Australia. No, no, it didn't. So how did you know what to go crazily after? I guess a lot of it was my parents and my friends.

finding out about these things independently and then bringing them back to me and saying, oh, we've found a cure. You've got to do this. This is the best thing. Yeah, yeah. So I'd get my hopes up. and have them dashed eventually. Yeah, exactly. Now I guess it happens a little more quickly because they just flick you the Facebook page or whatever and you know.

what it's all about and you've also got a thousand people who have done it and they've all been successful. Yes. That's something that you embarked on through Facebook. You got people to... sponsor you and then you flew over to America to have these miracle injections. It was August that we went over to Florida. And it was interesting because other people did actually get better. But when I did it, I only got, yes, a better voice and speech and less brain fog.

But there was all sorts of things that I was hoping for and I didn't get them. Those small improvements can feel pretty big though, even if it's not... miraculous cure. Absolutely, yeah. You will get better a little bit over time but you can't get back to the way you were before. Yes, well, now I take it as just another one of those miracle treatments and I fairly much ignore them.

And my mother says, yeah, there's this really good thing you should try. And I say, oh, yes, yes, yes. And she looks at me and she says, but you're not going to, are you? And I say, no, Mum. They know me now and they know that there's only so much they can do. Yeah. It's interesting, isn't it? Like it's over two years since I had the stroke. I'm still relatively young in my post-stroke journey. And so there is a bit of the believing in things. I suppose we, my husband and my parents and friends.

all think it's worth a shot. But I also know your experience also says, okay, just go slowly. Yes, it's been... 20 years or so since my stroke so yeah any additional recovery that i get now is a bonus but i went through the fact that i had the stroke before many of these cures before they had the NDIS or anything. I was kind of on my own. That was Kylie Betts and Julian Kutz and earlier you heard from Kylie's friend Amanda.

and Gillian's husband, Steve. That's it for The Health Report this week, but don't forget our sister podcast, What's That Rash?, where we answer the health questions everybody is asking. This week, it's the assumption that seed oils, think canola, sunflower, grapeseed, are terrible for you. We unpack how that assumption has spread and whether there's any solid evidence to back it up. I'll see you next week. See you then. Live radio and exclusives on the ABC Listen app.