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Leanne Watson was diagnosed with Limb Girdle Muscular Dystrophy (LGMD) at the age of 42. This rare neuromuscular condition affects the muscles around the girdle of the body, such as hips and shoulders, leading to muscle weakness and eventual wastage. Leanne describes how initially, she experienced a gradual loss of muscle strength in her lower body and how her symptoms were often brushed aside as natural changes with age. Her eventual diagnosis marked the beginning of a new journey—adjusting to life with a rare condition while raising three children. Despite the diagnosis, Leanne embraced her reality with resilience and pragmatism, focusing on staying active and finding ways to adapt to her condition. 

Living with LGMD: How It Impacts Daily Life 

 

As LGMD progressed, Leanne’s life became more dependent on assistive devices like walking frames and wheelchairs. She shares how the condition impacted her mobility and daily routines, explaining that simple tasks like getting up from a chair or walking required significant effort. This gradual shift was emotionally challenging, as Leanne found herself increasingly reliant on others for support. However, she emphasises the importance of finding strength in these new circumstances, accepting help, and adapting her mindset to face daily challenges head-on. 

 

The Emotional Journey of Adapting to LGMD 

 

For Leanne, adapting to LGMD was not just a physical journey but also an emotional one. The transition to using mobility aids like walkers and wheelchairs came with a sense of loss and frustration. She admits to moments of feeling like an “imposter” or questioning her need for these devices. But over time, Leanne realised that using mobility aids wasn't a sign of defeat; rather, it was a tool for maintaining independence. Support from online groups and conversations with others going through similar experiences provided her with comfort and encouragement. 

 

The Importance of Accessibility Awareness and Advocacy 

 

One of Leanne’s passions is raising awareness about accessibility. As a wheelchair user, she has firsthand experience with the daily struggles of navigating spaces that are not built with accessibility in mind. She shares personal stories of how a lack of accessible facilities can strip away the independence of individuals with disabilities. This awareness has fueled her advocacy work, where she seeks to educate others about the importance of inclusive design and infrastructure. Leanne believes that building a more accessible world benefits not just people with disabilities but society as a whole. 

 

Rolling Through Wednesday: A Radio Show for Disability Inclusion 

 

Leanne’s passion for advocacy led her to create the radio show Rolling Through Wednesday on Pulse FM, where she champions disability inclusion. The show features discussions on accessibility, inclusion, and community-building, providing a platform for voices that are often unheard. Leanne explains that the show has become a creative outlet for her, allowing her to stay engaged with the community while advocating for systemic changes. With the support of her co-host, Andrea, Leanne continues to spotlight inspiring individuals and initiatives that are making a difference in the world of disability inclusion. 

 

Coping with the Uncertainty of Living with LGMD 

 

Living with LGMD and non-alcoholic liver cirrhosis has created a sense of uncertainty about the future for Leanne. She acknowledges the emotional toll that comes with knowing her health may further decline, but she chooses not to dwell on what she cannot control. Instead, she focuses on enjoying her life as it is now—nurturing her garden, spending time with friends and family, and working on her advocacy projects. For Leanne, the key to coping with uncertainty is finding joy in the present and continuing to pursue her passions. 

 

What’s Next for Leanne Watson? 

 

Despite the challenges LGMD presents, Leanne is excited about what lies ahead. She looks forward to continuing her advocacy work, especially through her radio show, Rolling Through Wednesday, and is eager to connect with more people who share her passion for inclusion. Her upcoming plans include expanding her vertical garden and taking more road trips with her husband, as international travel is no longer feasible. Leanne is determined to live life to the fullest, continuing to embrace new experiences and adventures. 

 

Connect with Leanne Watson: Blog, Radio Show, and Instagram 

 

You can stay updated with Leanne’s work by tuning in to Rolling Through Wednesday on Pulse FM or by visiting her blog, Leanne’s Wheel Life, where she shares stories, accessibility reviews, and more. You can also follow her on Instagram at @Leannes_Wheel_Life for personal updates, advocacy insights, and more. 

 

Show Resources:

• Podcast Website: Wellbeing Interrupted
• Leanne's radio show Rolling Through Wednesday on Pulse 947
• Leanne's blog Leannes Wheel Life
• Related Episodes to Listen: (wherever you get your podcast or here!)
  • Episode 5: Challenging Illness Narrative
  • Episode 18: Hurdle2Hope® Stories - Meet Mariah MacInness

 

Transcript Episode 26: Hurdle2Hope®️ Stories Meet Leanne Watson Living with LGMS

 

Teisha: [00:00:00] Hey there, Tesha here, and welcome to episode 26 of Wellbeing Interrupted. Today is another hurdle to hope story. I'm really excited to share the story of Leanne Watson. Leanne's become a really good friend. we met through Mariah actually. So from episode 18, Mariah was actually doing a call, a Zoom call. 

She was in Morocco and it was all about content and both Leanne and I were on the call and we discov 

ered we lived only 10 minutes away from each other. So I'm going to leave it to Leanne to share all about the condition she lives with, but I found this episode A really special one. I couldn't stop thinking about the conversation I had with Leanne. 

I love chatting to Leanne. She's, yeah, it's just a great conversation that we often have and I hope you are as moved as I was. So hope you enjoy it to wellbeing interrupted the podcast dedicated to exploring the transformative power of a healing mindset. I'm Tisha Rose, your host and the founder of Hurdle2Hope®. 

If you're on a quest to not just survive, but thrive after a life changing diagnosis, then you're definitely in the right place. Living with MS and now stage four breast cancer has taught me a vital lesson. In the face of a life changing illness, our mindset is everything. Each week, I'll share insights, tips, and strategies to help you build a happier, healthier, more balanced [00:02:00] life. 

So welcome Leanne, thank you so much for being a guest on Wellbeing Interrupted. I've been wanting you to be a guest for some time and I know when I suggested it to you, you said, what will we talk about? Lots to talk about. So I'm so pleased you're here. So welcome.  

Leanne: Thank you so much for having me. It's, it's been quite, it's quite different being the, the interviewed one after, interviewing people for the last few months, myself on radio, so it's lovely chatting with you again. 

Teisha: Yeah, great. So, Leanne, and we'll chat about it later, has this amazing show rolling through Wednesday. That I've been a guest on a couple of times. So Leanne's right, role reversal. So she had to say yes. So then I can keep coming on her show as well. so Leanne [00:03:00] is with good reason. You know, I want to share your hurdle to hope story because you certainly embody the message of hurdle to hope. 

So can you share. With my audience, your experience of being diagnosed with limb girdle muscular dystrophy. Have I said that right? Yes, you have. Very,  

Leanne: very well done. Yeah, it's a very rare condition. So it's, and it's hard to sort of wrap your head around what that means. Limb, girdle, and then, and then muscular dystrophy itself is. 

you know, off turd, but you know, there's so many forms of it. It's also a bit of a tongue twister as well.  

Teisha: It is. I've been practicing. So you're best to give us insight into that. So yeah. And we can share about your diagnosis and how that period was.  

Leanne: It's diagnosis. Well, first of all, I'll, I'll explain what limb girdle [00:04:00] muscular dystrophy is. 

That's probably helpful. so limb girdle muscular dystrophy is one of the, I think, 15 or 20 types of muscular dystrophies. and that, also the umbrella of muscular dystrophy also covers atrophies. like spinal muscular atrophy and, and various other, kind of muscle or, neuromuscular conditions, also motor neuron disease as well. 

but Lymgirdle itself as one of them has got over 30 now, over 30 subtypes. And my subtype is still not known, but basically it's a neuromuscular condition. it results in a muscle wastage, where the muscles, the muscles just don't, because we don't know the subtype, we don't exactly know what's happening to make this, to make it occur, but my muscles are now, [00:05:00] they're deteriorating. 

They're no longer, breaking. Like when you exercise, they sort of. you know, you kind of, what do you do? Tear muscles to rebuild them. Mine just, fade away like there's no rebuilding them. Doesn't, protein doesn't make any difference. Exercise. There's a certain amount of exercise that's not good for, limb girdle muscular dystrophy. 

and it can be a limb girdle muscular dystrophy or LGMD because it's such a, there's too many syllables in that, in that name. LGMD can be, can, can manifest at a young age, like teenager, or even primary school age with, maybe a floppy feet at gate or, you know, just a different sort of a walk. 

and, or it can be fine. Like me, you can be pretty, very mobile and, you know, pretty active. Some people have been great, you know, really great sports people or dancers. That is definitely not [00:06:00] me. but then, and then not get it till you're an adult. So I was finally 42 when I was diagnosed, which was 17 years ago now. 

yeah, so, I don't, I hadn't had any idea what muscular dystrophy really meant or was, I'd just heard about it, and I, after a series of being, kind of pushed aside, you know, like, kind of, brushed off, after asking why. I wasn't necessarily, I wasn't hurting at all, but I was quite concerned in the end, that I was just losing a lot of my, I should mention too, limb girdle, it affects the muscles around your, a girdle, so the limbs, that surround your girdle. 

So that's, it starts off with your hip, hip muscles, your glutes in particular, thigh  

Leanne: muscle. and then at later stages, which has happened to me now, works up to yr shoulders, arms. And then of course, [00:07:00] everything's connected to everything else. So it impacts lots of things like my distal, you know, fingers and toes and ankles and things, because everything else is tightened up. 

You know, I lose strength in those grips and, you know, grip and that sort of thing. So, so what I was noticing though, was that I was losing a lot of weight in my lower extremities, my butt in particular. and in the end, after thinking, well, this is okay. in the end I decided it wasn't, and I was just told, you know, you're 40, your body shape changes. 

You're 40, you've had three kids, your body shape changes. You need to go to PT and build up your butt muscles. And, and my PT, had said she's never ever had anyone that's gone there and probably has never had everyone since wanting that to happen. But, although the booty has become a bit of a thing now, hasn't it, the last few years? 

Yes. yeah, a big booty. And then, and then, what was, [00:08:00] I had another, oh, one doctor, Got me to parade around in front of him with just briar and undies on and said, oh no, you look fine to me. That was pretty humiliating. Yeah. And yeah, especially 'cause he was a very unfit, terrible looking specimen of specimen of a man himself. 

But anyway, so, finally I got this wonderful, wonderful younger doctor. who did all the right tests and she said it looks like it could be muscular dystrophy, but that's really rare. So probably not likely, but I'll send you to a neurologist. And two days later, after seeing a neurologist, I had a biopsy, and it was confirmed. 

Teisha: Gosh. And what I often talk about, you know, diagnosis and the impact of that. So how did you cope with that little, you know, that period of time?  

Leanne: well, my. Neurologist was, she's actually very, [00:09:00] very learned as they, you know, as they are, but She talks quite rapidly, but she was, and talks very medically, but she was also, it was, she also sort of explained things a bit more, she, basically what I came away with was knowing that I will die, or thinking that I will die with it, but not of it, and that there are so many variations to LGMD that I, my future was uncertain and that all they think they knew is that the older you get, the slower the progress of deterioration. 

So I went away, thinking, well, that's fine. My life's pretty normal. I know this is the reason why my muscles are, you know, my butt muscles are wasting, but that's fine. At the moment, I can still do everything I need to. I wasn't envisaging, a life where I was in a wheelchair or, you know, doing anything less mobile. 

So I just kept [00:10:00] plonking away because there was nothing, there was no medication I could take to change any outcomes. and there was no real, I started doing Pilates, a couple of times a week and, you know, did some dietary changes. just to sort of start eating, I guess, more veggies. And I wasn't really eating badly anyway. 

and, yeah, so I just went away kind of thinking that the only time initially, and even the way I told the kids, it's kind of like it was a fairy tale, like, Oh yeah, I just went to the doctor and this happened and, and the kids still laugh about it now, like just, you know, just the like blasé way that mum comes back talking about this life changing, you know, condition. 

But I thought they're teenagers. I don't really, you know, well, they do want to know, but they're not really focused on what's going on for their mum and dad. And I really didn't know what was going on for me anyway. So there was no point in us all sort of huddling around and, you know, having a big week festering.[00:11:00]  

But the only time I did, and in those early days, is I was told to go to re rehab for six weeks, which involved that was my first foray into allied health. and, and so that was my first. visit, or knowledge of, modalities like occupational therapy and social work and, physiotherapy and all the, oh, I think they were the main ones. 

Maybe there was one other, that goes along with it all. and that was really to kind of learn, how to adjust or I guess, yeah, how to adjust my body a bit to walking a bit better maybe because my gait had changed a little bit. and also we were building a new house, so your OT. would help us, you know, know how to, you know, where to put the benches and things. 

Teisha: Yeah.  

Leanne: I'm probably going way too much over for this first part, but anyway, I did [00:12:00] have to bring, so they, they, they referred me to a, I say, sorry, and then I kept going. they referred me to one, to one organisation in Melbourne. And while I was waiting on the phone, the lady didn't put it on hold, but she put the phone down and she goes, she said, she yelled at someone and said, You know, someone wants the Parawing, what's the number, for the Parawing. 

And I just burst into tears on the other end of it. Yeah. Paraplegic, like I'm not, you know, and not, and it's not, you know, I'm, I'm a lot less ableist now. But even, you, but you, it's such a shock to think that that, you know, you're all of a sudden, when you don't even feel like it, you're being, treated or, you know, You know, you're, you're already in a in that sort of environment. 

Yeah. Yeah. No, you know what I mean? You're already in that box. Yes.  

Teisha: Yeah. So it takes a lot of hope away, doesn't it? When they're made up their mind.  

Leanne: Yeah. Yeah. [00:13:00] That's right. That's right. So that was a bit upsetting. And, yeah, I didn't enjoy that part. But apart from that, it's sort of. Sort of didn't, you know, affect me for probably another two years, maybe. 

Teisha: Okay, and so the progression of stuff, as such, did that, was that quick progression, like after that two years, or sort of how did it start impacting your life?  

Leanne: Yeah, Gosh, I could do like six hours on this. The highlights, the highlights. Yeah, the highlights, yeah. yeah, because there's, yeah, they're never any lowlights, are there? 

Yeah. what is it? The first, I guess the first sign was that my mind has progressed quickly, quite quickly. I was also told it wouldn't. This is, that some types affect your respiratory system and some don't. But [00:14:00] mine, doing that now. So I'm waiting and waiting and waiting for more, breathing tests to, to find the, find out about that. 

But anyway, the first very, I'd say the first thing I noticed was high heels were becoming, painful and I was sort of tripping over my feet. So things I get rid of my beautiful high heels. not that I wore high, high heels, but, you know, just nice or whatever court shoes. And then, so I was doing flats. 

I couldn't, I couldn't get off the toilet with high heels as well. That was actually probably the first thing even besides the walking. So I, I remember one particular time being out with my girlfriends and. Well, you know, I went to the toilet and then I had to actually take them off, like undo the buckles and everything, take them off to get up from the toilet seat again. 

And then I thought, hmm, something, you know, like I really, yeah, this is getting a bit worrying now. [00:15:00] and then the next step was getting a toilet frame, which I kept increasing in height, you know, over the toilet. and I started with a couple of girlfriends. going visiting, I would take it with me, and that was fine for a little while, but then there was, then I couldn't really, I would, I made a bag for it, a big cloth bag, and then I couldn't really lift it up, fold it, and put in the cloth bag, because I couldn't really stand and sort of twist myself at the same time. 

So that got a bit tricky. but then the next, I'll try and go really quickly. getting up from couches was difficult. walking, so I went from walking stick to walking frame. So everything, you know, you've, I like, I really resonated with all your feelings when, you know, starting to use the frame and things. 

walking stick, walking frame, the walking stick really wasn't super helpful, that was still pretty scary. but I can go into detail another time with that anyway, but [00:16:00] walking frame, electric scooter, manual chair, power chair, yeah, that's, yeah, that's my, that's my evolution.  

Teisha: And I mean, you touched on it as well, that's, you know, we rattle that list off, but that's emotional too. 

Like I know the decision to use a walker, other people might think, Oh, what's the big deal with that? It is. It's confronting. Do you find that it's confronting and do you sometimes see an image of yourself I do in the shop window as I'm walking past and thinking, Oh gosh, that's me, you know, I'm walking the walker? 

Yeah.  

Leanne: Well, I think we've always associated using a walker with being old, and it, and it definitely, like, this condition, I feel like I'm much older. Like, it, it has aged me inside, like, mentally, I think. It's definitely aged me, and because you're forced to slow down anyway, and then it gets, you know, and [00:17:00] day to day stops just getting more tight, just becomes more tiring. 

I think most people with chronic conditions find that, you feel aged anyway. but there was also, also that feeling that I know a lot of people have, almost all of us, I think at one stage that you've given in, that you've let, That, you know, you've, you've let yourself down or, or even that you're an imposter, like, you know, maybe I, what is going on here? 

Why aren't I walking properly? Or, you know, have I just given up too quickly? Do I really need this after all? You know, all that questioning and, you know, I'm an idiot. Like, you know, you don't need it. But, so that's why the value of, which I know we might talk about later, but the value of online support groups, especially for rare conditions, is, you know, is, you can't be understated, like overstated, the value of that, knowing that other people are genuinely going through the same thing you are. 

Teisha: Yeah, and that's [00:18:00] great, especially if you connect to like minded people, and that's why I love our catch ups, because, yeah, I think it, like you're talking about that narrative, That somehow we've lost the battle because all of a sudden we need to use a walker. Well, MS is one or, you know, muscular dystrophy is one. 

And, and also sometimes, you know, sometimes when I was in hospital, I couldn't move my legs and I was wriggling my toes. And it's like, it's not through not trying, I just can't move them. Yeah.  

Leanne: It's really weird and it's even now, like I'm a lot worse than I am now and I get help with every single, you know, activity that I do, an action. 

And even, I like, just last night brushing my teeth, in the bathroom, like Gary, my husband, rolls me over on the shower commode in front of the basin [00:19:00] and, and puts the, like, puts one arm up after another, has to meet my left arm first so I don't have a balance. onto the, onto the, basin. and he, then he wets the toothbrush, gives it to me, and it's a power toothbrush now because that's easier to use. 

And then somehow I kind of angle it in. But, but even with that, the, the effort we, my angle was just a little bit off sitting on the chair, which happens more and more now. And the effort it took for me to, like I said to him, I'll just slow down for a minute while he was putting my arms up, because I had to. 

re calibre, realign myself, kind of. Yeah. But it's, it's nothing that he can see, and the effort internally for a lot of things, you just don't, like even moving my left arm from my leg onto my, the chair of my, both arms really, but my left is worse. There's a real effort involved, a real internal, and you just don't see it. 

So yeah, it's [00:20:00] incredible, isn't it?  

Teisha: Yeah, and that that'd be physically exhausting, but also mentally exhausting. Yeah,  

Leanne: and frustrating. It's never not frustrating. Yeah.  

Teisha: Yeah. But you've always got a smile and that's authentic too, so I'm not saying that you're just or because it is like you're and that I'm sure helps your natural disposition of being, you know, of that, you know, yeah, beautiful smile and so that. 

I'm sure helps, but gosh, it must be frustrating and it's hard to, like, I have no idea exactly how you are feeling, except for when my legs just would not, you know, move. Mm-Hmm. and I was sort of about, you know, in bed, not able to move and it, it's like I felt claustrophobic in my body. It was like I just wanted to escape it. 

Yeah.  

Leanne: Do you feel that? Absolutely. That's my biggest, biggest thing. Trapped. That's how I feel. And. [00:21:00] I've had to make, well not really peace with it, but I've just, it's just become part of my persona, I guess now. I just, yeah, definitely trapped is the right word for it. and I, yeah, agree with you. You just, yeah, completely bound. 

You are bound. You know, when there's a lot of people, you know, speaking, you know, I'm not wheelchair bound. It's a tool and it's given me freedom and, you know, I love a wheelchair and this and the other, but you're still sticking bound to it like, wow. And it's, you know, it's kind of like a, I know we're supposed to be a lot more positive about using these mobility aids and, and I absolutely am, I'll never not be grateful that I've got, you know, that I'm able to, to have all this assistive technology. 

Yeah, because I. I'd probably be dead by now for sure, but, that, but I also think that it's, it's like a symbol, isn't it? It is a symbol that you can't [00:22:00] do, you don't have the freedom, you can't jump out and run and you go and do all the stuff that really feels good, that really makes you feel really alive. 

Because. My disability, and my husband actually came up with this a few years ago, Gary, it really is a thief. Like it takes so much away and it, yeah. And it just, and that's one of it. It's that, that freedom, that, that real, you know, yeah, I know that. Yeah. Just being out. Yeah. I don't know. I just, I'm really grateful though, that I've had, that I did have that freedom for, Like many decades, you know, four plus decades before, you know, it didn't anymore. 

So I can still remember what the feeling of grass is on my feet, you know, and remember what the, you know, the, you know, water, hose and all that. So I'm lucky that I can kind of play that back in my head, whereas, you know,  

Teisha: not everyone can. No, but then sometimes if you've [00:23:00] experienced something and then can't do it, that's almost, I say sometimes I'm tormented by it. 

Leanne: That's true. Yeah. Yeah. I kind of get that too. Actually, my biggest torment day to day or second to second is not being able to scratch anything. Yeah. Yeah. Yeah. Yeah. It's really fun. It's great. Yeah. That's right. Every, you know, if you, if you think about it, like even in the course of this conversation, you might, you know, put you at. 

Hand up. See you later. Yeah, and put it behind your ears every now and again, or just one finger over a part of your cheek because it just, you know, feels a little bit irritable, whatever. And that's something I go, I think I'm fine, I think I'm fine, you know, I keep kind of looking or twitching or, you know, trying to think of something else. 

Teisha: Yeah. And. I mean, that has an impact too, because I know you said, when you saw my hairing up Bob, that that, you know, you've had to have a [00:24:00] haircut that's a lot shorter because that's part of being able to manage your hair.  

Leanne: Yes, yeah. Yeah, that's right. Yeah, that was, you don't, I didn't realize I was main until I had to, you know, give up stuff that, you know, was important to me, I guess. 

And that included, yeah, the hairstyling and my hair and, you know, and blonding, going from blonde to making it natural. That was the first biggest hurdle. I'd like to think I would have done that anyway. But then like to be able to, I've always enjoyed styling my hair, like just mucking around with a, you know, whatever it is. 

I've kind of enjoyed that. A lot of people don't, but, yeah. Yeah, that was the thing. Just another thing, you know, kind of taken away really. Yeah. Thi thi yeah. That was robbed from . Yeah. Me .  

Teisha: And I guess what I love, about what you are doing as well is having. [00:25:00] You know, good conversations and educating others as well. 

So I think even what you're saying now, often we see someone in a wheelchair, you know, and when, you know, before everyone will say, you know, have a screenshot of us talking together and you're in your chair and it's got support around your neck and you aren't able to do so, I think what's amazing though, is whenever I, we chat, I, I don't notice it, you know, I don't notice care. 

I'm just, you know, drawn to your face and your presence, which, you know, and I'm sure lots of people are saying, whereas I guess out in public, you're always worried, you know, what people are looking at and saying, but what I was going to say is I love the way that you've then used your voice to really advocate for others. 

and one of your passions is accessibility. And I think, you know, that's such an important topic. And I think something that [00:26:00] unless you're in a chair or using a walking frame or, you know, you don't realise that it can be really difficult if things aren't accessible. So just talk us, to us a little bit about that. 

Why, you know, what you do in that space and what made you passionate about that?  

Leanne: About, well, I, I, I think it's been just a, a natural sort of result of, I guess when you join a club, like the disability club is, you sort of do gravitate to, to, you know, you, you start kind of listening to people's experiences and, and then, and then it's, and resonating with some of it and being shocked by others and, and realizing there's a whole, whole large world that you were never part of. 

That really is worthwhile being part of, and knowing about, [00:27:00] and everybody should know that there's a huge contingent of people always that are, that are in pain, that are suffering, that are being excluded, that are missing out, and, and, and many other, then you start learning, well I did, start learning about marginalised, yeah, other marginalised people. 

So, you know, it overlaps them with, you know, with Indigenous and homeless and, and, you know, ethnicity and, and that sort of thing. So, that's really important. You know, I, I loved that. I learned all that and that sort of grew that interest in that knowledge grew the more that other things diminish. 

So. You know, Gary took over shopping, you know, we got in cleaner, I, gave up my quilting and sewing, gardening, driving, you know, girls weekends, that sort of thing, so I kind of [00:28:00] gravitated more and more to that. And I just thought, well, there's a, there's a Japanese proverb that says, something about, he who, he who can should, something like that. 

Yeah. And I thought, well, in my tiny little way, and I, I know that I'm not anywhere near as, you know, big and forceful as a lot of advocates, but, but I do like, this, this, what's the word? This, the thing called systemic, systemic advocacy. And, and in my little way I can be part of the systemic advocacy. 

So I started my blog, started writing, that's become a little bit, like I just need space to think about what I'm writing and that has become less and less. So I've kind of had a hiatus, but I really want to get back into that at some stage. So I've still got my blog site, it's still pretty current, my [00:29:00] stories and things. 

Yeah. But then I lucked on the opportunity to, down here in Geelong, in regional Victoria, to get on the community radio station. They're in a, they're a diverse station, at Pulse FM. And, and so my shtick, yeah, it's called Rolling Through Wednesday and It's, basically about inclusion, specifically disability inclusion, but, you know, expanding to others, community and hopefulness. 

So, and I've, it's great to, I've got a really wonderful, friend and support person, Andrea, who's, learnt really well, like, learnt brilliantly how to panel. So she's my arms and legs. and the two of us go in there and, do our best. We sort of do a bit of a. A pre, you know, pre thing in the afternoon where we go over the run sheet together and have a bit of a discussion. 

And then, then we might have lunch [00:30:00] first or whatever we do. A bit of an outing and then go into the studio. And I've been, Andrea's a Born and Bred Geelong gal, so she's got lots of great, lots of great, connections too. But yeah, through both our connections, through the station. We've just found so many brilliant people like you, like, yeah, I'm just so glad that was through Mariah that I found you and we've been, yeah, really great buds since and you're a, a regular guest of mine. 

I need to have you back on again soon. Actually, it's been a while now. I can't answer your question. That's why it's important to, to keep doing things. You know, and I, I think the other thing I'm, I'm personally, selfishly, I'm just scared of if I do nothing, I'm just scared of what that will mean mentally for me, with like most people I'm assuming, and I, daytime TV doesn't interest me, not on a regular [00:31:00] basis, it's definitely good for a self care day or whatever, so I don't know really, I'm kind of running out of, you know, options in that, to that extent. 

But I have chosen to do this sort of advocacy work.  

Teisha: Yeah. Because I  

Leanne: think it's really important. And there's so many interesting people around that just happen to have disabilities and so many resilient, clever, you know, great people.  

Teisha: Yeah. And I think it's so, so important because you've got such a unique position of having the lived experience, but then able to articulate that. 

And, you know, share insights with others, because sometimes, you know, I've equated advocacy is just confrontational, you know, and being, you know, fighting the fight and all. It doesn't have to be that at all. It's like, let's open people's eyes to what it means for something not to be. accessible. You know, they might have no idea. 

[00:32:00] So it's not through being, you know, not nice. It's  

Leanne: not hysterical or anything. Yeah. Yeah. Yeah. Yeah. That's right. You're right. It's just opening people's eyes to open, you know, like the more we all may have discussions, the more we share, you know, the more people will stop and think next time they, you know, make a little aside, you know, you know, a remark or, you know, Or when they're building their house, they might, you know, widen the doorways a little bit more for when they're older or, you know, when they're, I don't know, they might just get ramps for their friends. 

That they know or have got a wheelchair or, you know, they might have consideration for a person they know that's got sensory overload. So, you know, they kind of understand, or some with chronic pain and not get cranky that this person's cancelled for the fourth time in a row. You know, it's, they genuinely can't do it for, you know, and that's their business. 

So there's no, and they've got their [00:33:00] reasons. So all that's opening my eyes too. Like I've just got the physical disability. I'm learning so much more about psychosocial and neuro diversity and. so many other things. So I think it's, it's a win win for me, you know, like for everyone, I think, the more we all perpetuate this full on systemic, disability discussion. 

Teisha: Yeah. And just being kind, you know, and just being, yeah, aware of people around you. And it's funny, we've moved now to more of a country town and, you know, What's been amazing is so many people when I use the walker, because often you have to push the door in, you're doing your walker, and it's really difficult to navigate, but so many people have jumped up at a cafe or whatever and opened the door, or I picked up our takeaway tie the other night and the lady quickly went from behind the counter, opened the door for me, and I thought, [00:34:00] that never happens. 

So it's just that, yeah, that awareness and I think how nice is that? easy for them, but it makes it possible for me to go there to pick up the food.  

Leanne: Yes. Yeah, that's right. Well, one of my first best experiences in, you know, in, in, on those lines was, when I was still in the manual chair and Gary and I went to Chadston, actually, we were still living in Melbourne and I was in my manual chair, so he was pushing me. 

But he pushed me up, so I was sort of first at the counter to order my coffee. But the young girl there looked at me straight away, didn't look at Gary at all, handed, like, stretched over. At that time I could reach and now I can't, but my, you know, I couldn't reach far, so I had my card or money, whatever it was, and, and was handing it to her. 

And she just knew instinctively, I didn't even have to tell her, like, to reach right over and get it from me. And then, the whole transaction, I can't remember if it was something else. Was so uplifting and so lovely, but we came away thinking, [00:35:00] I wonder if she's got someone at home with a disability because I wouldn't have known, but then. 

I hadn't been disabled before that, so maybe there have been so many beautiful, compassionate, kind people that we haven't needed to, to, you know, haven't needed to avail ourselves of their, you know, kindness, I guess, before that, so. Yeah,  

Teisha: it is. And I think conversations like this are really important. So anyone listening is, you know, we are so much more than whatever our disability or condition is. 

And we need to connect at that level and not, you know, as I say now, you know, My, you know, my legs aren't great. They look funny. And now I said, but I used to think, Oh, well, sitting up, I'm fine. And now I'm flat chested. So that looks a bit funny. And it's like, Oh, but it's like, what does it matter? You know, we've just got to embrace that difference and it doesn't matter. 

And people need [00:36:00] to see us beyond that and connect with us at another level. And hopefully we're doing that by having these conversations. And  

Leanne: I think personally, once we've. Sort of accepted mostly that that's us, then we come across, like you come across so beautifully confident and articulate yourself and, you know, with so much to say, and, you know, so much, you know, we have great conversations that once again, even if you were in a wheelchair as well, or whatever, you don't really look at that anymore. 

You know, I don't certainly don't stare at your chest and wonder why I can't see your boobs or anything. and I think that's what happens if you're exuding your confidence and your, and yourself, your energy kind of thing, then, people pick up on that and don't, yeah, and just really recognize you. 

Teisha: Yeah, I think so. And I think that's what we need to do. And yeah, and have that [00:37:00] confidence and not worry about the reactions of others, you know, and I think often like when people are diagnosed with MS, it's like they presented the worst case scenario that you'll end up in a wheelchair. And I think you need to more say the worst case scenario is you end up miserable sitting in a wheelchair. 

You know, it's a really good difference, point of difference. Yeah, I think so because it's like, that's not my worst case scenario now being miserable is whether I'm walking or not walking, you know, it's not, it's me, the person sitting in the chair or whatever it is. So yeah, I think we, we need to change the way people and the medical world talk about it. 

Leanne: Yeah, that's right. Well, that is the, yeah, the medical model, isn't it? Looking at that, and it's hard not to get caught up in all that and, and trapped by. all those, you know, that sort of terminology and that fatalistic kind of, you know, dire kind of [00:38:00] way of thinking about our conditions. And the more, right, the more the conversations keep going and the more attitudes and, structures and policies and that sort of thing keep changing, then it's just another fact of life and, you know, yeah, not a miserable life sentence. 

Yeah, that's  

Teisha: right. And I mean, we often talk about we both look ahead to a very uncertain future. So how do you cope with that? And then what things are you looking forward to?  

Leanne: Good questions. well, I've got on top of the LGMD, I've got, non alcoholic liver cirrhosis as well, which was quite a shock finding that out three years ago. 

And that's, that's got a very, that's the one that's probably mostly got the uncertain outcome, but I have definitely got. you know, diminished life, you know, availability or whatever the word is. but I, [00:39:00] that's probably the scariest one. So my, I, it's really funny actually. I've, I've kind of looked into spirituality in, you know, different forms over the years and been really interested and now I'm, I don't really love it. 

Just, I don't know, the way I look at it is I feel like death is now final when it happens. And it doesn't worry me that that's the case so much. I don't, I, I just expect, I think like I'm nearly 60 now. And if I lived 50 years ago, that would be my natural. you know, around the natural time to die kind of thing, or maybe 70 years. 

so I just think like every year's, I'm pretty lucky to live every year anyway, but that doesn't mean I'm not going to be sad. I try not to think too far ahead about when I might die, [00:40:00] but I don't want to not talk about it either. And I don't want to look too far ahead because there are, there are So many great things, you know, about, you know, like grandchildren growing up and more grandchildren happening, coming and, and that sort of thing and things that Gary and I'll do together and, and that sort of thing, but, and that would, that's sort of upsetting to think that a lot of that will, may go on without me. 

So yeah, I don't think I'm on that far, that far ahead, but I kind of want to be pragmatic about it too. You know what I mean? Like there's no point in fighting something that may happen. I don't want to give into it and I want to do as much as I can in the meantime and part of my thinking along that might be because it is, it still is just hard having this disability. 

So it's not something I really want to be doing for another 30 years, in all honesty. So it's just, yeah, I know it goes back to the popular trend of You know, wanting to live to year 100. you know, that's just the way it is. [00:41:00] So, but I'm looking forward to heaps. I haven't said that. I really am, I'm looking forward to the vertical garden wall that we're starting to create out the back. 

I love my garden. We, Gary and I have really been, working hard and, and, you know, all my, all my support peeps, when they come over each day, we sort of do a little bit You know, plant wise, that really brings me a lot of joy, you know, just looking at the garden every day and, and working in it and that sort of thing. 

And, I'm looking forward to that, like all the, you know, going back and forth to nurseries. looking forward to the next, we're not going to do any overseas trips anymore. or, or even, domestic plane trips. They're just way too difficult for me and my condition. Plus, on top of all that, even with the discomfort or pain or whatever that would be, you know, entail with transfers, it's actually pretty impossible actually. 

The worry of my wheelchair [00:42:00] breaking when, you know, just replacing the generic chair, would not be comfortable, like they would just ruin a whole holiday. So now we do drive holidays, so looking forward to the next one of those. looking forward to, hanging out with friends more. We've got lots of friends, you know, friends come and go down here, which is lovely. 

It's been really special living on the Bellarine. It's a holiday destination, so people come down here, which is lovely. So yeah, there's lots to look forward to. And I'm really looking forward to continuing finding out, you know, about, like, more people. and more businesses and organizations that are doing so much good in the community. 

I'm really looking forward to continuing that with you.  

Teisha: Yeah, no, your life is full, which is, you know, which is all and, but that's testament to you as well, that friends still want to, you know, hang out and do things and all, because if you were miserable in your chair, they wouldn't be [00:43:00] wanting to come around as much. 

Leanne: Anyway, because I'd be too miserable to invite people.  

Teisha: That's right, that's right, and, yeah, and it, it's great, and your, radio show, I love it, you know, and you're doing such amazing work with that, and I know that would be mentally fatiguing. for you. it'd be stressful for anyone. and it's great, you know, Andrea's helping you out and you're such a great team doing that together. 

and yeah, but I'm sure that is taxing, you know, preparing for that as it is preparing for this interview for me. you know, it's all those extra things.  

Leanne: It's yeah. Thank you. Well, you understand that yourself, I'm sure with all, you know, with all the things you've got going on on a daily basis. But, Yeah, but thank you for being so understanding, and your, yeah, everything, your podcasts have been so interesting, every episode.[00:44:00]  

So interesting. yeah, I really, I really love it. And there's a different sort of, different things to pull out each, each time as well. yeah, you're pretty insightful interview. You're very good.  

Teisha: Thank you. Although you're our conversation about, death and dying, I think we need to do some more episodes on angel numbers and manifestation and all my  

Leanne: Yeah, as I said, I've definitely gone in and out of woo woo stuff over the years, about what you call woo woo, and I'm not not interested, like I still am interested. 

I really am. I've just started becoming more for some reason, like that, yeah, that thought, but, that thought of, you know, like, there, you know, maybe there isn't any spirituality, maybe there isn't anything, we just stop. Like we, you know, ants die, they stop, you know, as far as we know, anyway. but anyway, yep, I'd love that discussion. 

And death and [00:45:00] dying is something I do want to bring in more often to the radio show. and Andrew and I are both of the same kind of thinking, that it just needs to be talked about a lot more. it really is, you know, to try and destigmatize death, to be able to allow people to. deal with it the way they want to and to, you know, discuss it as well the way they want to, whether they're dying or they've got someone else or that sort of thing. 

So, yeah, but that'd be great. Yeah, let's have, let's have more great death and woo woo discussions. Well, I'm  

Teisha: going to a retreat this, weekend or for the day on Saturday in Dalesford, so I'll be, yeah, I can't wait. So I'll be filled with information for our next coffee catch up.  

Leanne: Oh, you have a great time. 

It sounds like it's going to be super.  

Teisha: I will. I will. I just looked up and I forgot we're recording. You see, I told you it would just be like us chatting. So it's great. So as [00:46:00] we finish, What's the best way for people to connect with you? I'll put some contact details in the show notes. They're rolling through Wednesday. 

program is through Pulse FM in Geelong. Yeah, yeah, the website  

Leanne: 947thepulse. com. au. And then you search for shows, look for Rolling With Wednesday, and there'll be a list of all my shows there. and, my blog, which I am getting back into. But there's still, you know, pretty current stories there. Or, you know, interesting, you know, older. 

Yeah, there is. It's very interesting about my, and I do reviews too, accessibility reviews. That's leanne will life com, so it's LEA double N-E-S-W-H, double E, double l, ie com, .  

Teisha: Excellent. I'll put that in the show notes. And then your Instagram. I love your Instagram because you share lots of good [00:47:00] things on that as well. 

Oh,  

Leanne: yes. Yeah, I need to. Thank you. that's Leanne's wheel life. It's Leanne's underscore wheel underscore life.  

Teisha: Okay. I'll put everything in the show notes so you can connect with Leanne. So thank you so much for Leanne for being my amazing guest. I love chatting to you and you bring, yeah, so much joy to the world. 

Good authentic energy and great conversations. And you really do, I guess, embody hurdle to hope because often I talk about the hope is when you're no longer defined by your illness. And that is what I say, you know, in terms of you, you're going through so much, but as I said before, I'm drawn to your energy. 

Definitely not your wheelchair or what's happening and I forget, you know, we'll go out for and have lunch and I forget because your support person is also a friend [00:48:00] and we're all chatting and you know, whether you have to have a drink and someone give it to you or like, it's not part of it. It just doesn't matter. 

It's just, you know, how it is. So, yeah, you do well.  

Leanne: Thank you. Thank you so much. It's been really lovely. You're welcome. We'll see you soon. Okay.  

Teisha: Bye. Bye. 

Okay. I hope you got lots out of that episode. I'm so grateful for Leanne being so open. Opened about what her experience is with limb girdle muscular dystrophy Yeah, she's an incredible person and I love our conversations We have whether it's you know through messenger on our phone or chatting on her radio show Or at a coffee shop. 

Like always, I give you an old episode you [00:49:00] can catch up on. And today that's episode 5. That's where I chat about the battle narrative. Like Leanne and I were discussing how sometimes you're made to feel like somehow you're lost by making changes. Like getting a walker and somehow that means MS as one. 

So listen to that episode and then you'll know what we're chatting about. Otherwise, have a great week. I'm sitting here in our caravan still. Good news is the heater was connected this last week. So although it's freezing outside at the moment, The heater will be turned back on when I stop recording and yeah, it's a whole heap more comfortable. 

So enjoy your week and we'll chat soon. Thank you so much for joining me today on [00:50:00] Wellbeing Interrupted. If today's episode inspired you, Or you think it could help others, please share it by tagging at hurdle to hope in your Instagram stories, or just by telling a friend about it to spread our message of healing and hope to those who need it most. 

Your ratings and reviews are invaluable by taking a moment to rate and review on your listening platform. You help us attract inspiring guests and create content that empowers all of us to thrive. Don't forget to follow me on adhertal to hope for more insights. I'd love to see you there. Always remember to thrive after a life changing diagnosis. 

Your mindset is everything.