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In this episode of Wellbeing Interrupted, I had a beautiful conversation with Leah Alstin, who has been navigating life with Friedreich’s Ataxia (FA). Leah shares her personal experience, from being diagnosed at a young age to becoming involved in advocacy for awareness. She opens up about how FA has affected her life and how she continues to focus on living well with the condition. 

 

What is Friedreich’s Ataxia (FA)? 

 

Friedreich’s Ataxia is a rare, genetic, progressive neuromuscular disorder that affects the nervous system and muscles. Leah was diagnosed at 17, a time of significant change in her life. As she describes it, FA primarily impacts coordination, balance, and mobility, with potential effects on speech and overall physical health. 

 

Leah mentioned, "I was 17 when I was diagnosed, and at the time, I was just finishing high school." The diagnosis was a lot to process at a young age. She decided to push forward with her life, focusing on her goals without letting FA overshadow her plans. 

 

The Impact of FA on Daily Life 

 

As a progressive condition, Friedreich’s Ataxia has continued to affect Leah’s mobility over time. Walking, once natural and effortless, has become more challenging. Leah now uses a walking frame and sometimes a wheelchair to maintain her independence and safety. 

 

Leah shared that FA affects nearly everything she does in day-to-day life, from walking to routine tasks. She mentioned that using mobility aids, like a wheelchair at home, has made it easier to manage her household and ensure her safety. 

 

Even with the physical challenges, Leah has adapted by transitioning into flexible work, including managing social media accounts for businesses, which allows her to balance her health needs with professional pursuits. 

 

Navigating Frustration and Adjustment 

 

Leah openly discussed the adjustments that come with using mobility aids and how it took time to accept these changes. 

 

She noted that initially, using a walking frame was hard to come to terms with, but she now focuses on the independence it provides rather than the stigma around it. Leah explained that focusing on safety and functionality has helped her embrace the use of mobility aids. 

 

Leah has also experienced speech difficulties due to FA, which she described as frustrating. While she articulates words clearly and slowly to be understood, she expressed how it sometimes feels discouraging when others repeatedly ask her to repeat herself, creating a strain in social interactions. 

 

Advocacy for Friedreich’s Ataxia Awareness 

 

Leah is dedicated to raising awareness about Friedreich’s Ataxia and is actively involved with Friedrich’s Ataxia Research Association (FARA). She participates in various events and campaigns aimed at increasing awareness and supporting research for FA. 

 

Leah highlighted how important it is to her that people become more aware of FA, noting that although the condition isn’t widely known, it is more common than most people think. She believes that spreading awareness can help create support networks for those living with the condition and contribute to research efforts. 

 

As an FA ambassador, Leah is available to connect with newly diagnosed patients and their families, offering them guidance and support. She also shared that she is involved in organizing events like walks, rides, and gala balls, which help raise funds for FA research. 

 

Balancing Acceptance and Hope for the Future 

 

Although FA is a progressive condition, Leah shared her belief in balancing acceptance with hope. She noted that she has accepted her diagnosis, but that doesn’t mean she has given up on the future. She emphasized that she continues to explore new treatments and prioritizes her health to maintain the best possible quality of life. 

 

Leah also expressed her excitement for an upcoming personal milestone—a trip to Japan with her family. While traveling with FA brings its own set of challenges, she is eagerly looking forward to the adventure. 

 

Connect with Leah 

 

Leah’s story highlights the resilience, strength, and adaptability that many living with chronic conditions demonstrate. If you'd like to follow Leah or connect with her, you can find her on Instagram at @being_leah. 

 

SHOW RESOURCES

 

• Podcast Website: Wellbeing Interrupted
• Leah's Instagram Page @being_leah
• Teisha's Instagram @hurdle2hope
• Hurdle2Hope Newsletter 

 

Transcript Episode 29: Hurdle2Hope®️ Stories: Meet Leah Alstin - Living with FA

 

[00:00:00] Teisha: Hey there, Teisha here, and welcome to episode 29 of Wellbeing Interrupted. I hope you've had a great week. I've had a really good week actually, um, of getting a lot done on my business. I've started with a new VA, so I'll chat about that another time, but that has really freed me up and enabled me to also prioritise my wellbeing a little bit more, so that's a big win. 

[00:00:32] And, uh, Today's episode, I've been really excited about sharing. A couple of weeks ago, I interviewed Leah Elston. Leah is an incredible woman, and I've been watching Leah's story from afar, following her on Instagram. We also share the same physiotherapist in Clare. And, um, Yeah, I was really eager to have Leah on because these Hurdle2Hope stories are so important to, I guess, get to know other people who are living with health conditions. 

[00:01:10] Leah, like myself, has a neurological condition. It's called FA and I won't say too much more because we had a great conversation and you'll learn a lot. All about Leah by listening to this episode and I'll chat to you at the end. Welcome to Wellbeing Interrupted, the podcast dedicated to exploring the transformative power of a healing mindset. 

[00:01:38] I'm Teisha Rose, your host and the founder of Hurdle2Hope. If you're on a quest to not just survive, but heal, Thrive after a life changing diagnosis? Then you're definitely in the right place. Living with MS and now stage 4 breast cancer has taught me a vital lesson. In the face of a life changing illness, our mindset is everything. 

[00:02:05] Each week I'll share insights, tips and strategies to help you build a happier life. Healthier, more balanced life. So let's begin your journey from Hurdle2Hope starting right now. Okay, so really excited today. I'm finally meeting face to face Leah. So I've been following Leah on Instagram for a long time. 

[00:02:30] I've, also have the same physio as Leah. So, you know, there's that connection as well. Um, so Leah is another incredible person and another Hurdle2Hope story that I really want to share with you. And yeah, so welcome Leah. Thank you. Thanks for having me. You're welcome. It's very exciting. So I think, and I'm, um, what we'll first sort of start off with, you know, there's a reason, as well as you being just such a beautiful person, there's a reason you're here, um, because you're living with a neurological condition, um, but not MS like I have, and I always have problems Um, and pronouncing the name. 

[00:03:17] So I say you're living with F A. Yeah, that's what I say, I can't pronounce it either. So do you want to try? Yeah,  

[00:03:27] Leah: so I've got, um, Friedrichs Ataxia, or F A as I call it.  

[00:03:35] Teisha: Yep. Okay. And so can you explain what that is?  

[00:03:39] Leah: Yes, I can try. So, um, Frederick's ataxia is a genetic neuromuscular progressive condition or disorder or disease, whatever you prefer. 

[00:03:56] Um, so, uh, yeah, do you want me to go on with my, my  

[00:04:03] Teisha: diagnosis of it? Yeah, that'd be great because look, I'm exactly the same. I know is and I always stuff, you know, multiple sclerosis. I can't say either. And then I have really issues explaining it. I just say, yeah, it's off the nervous system. It's my nerves don't fire properly. 

[00:04:20] Then sometimes I can't walk, you know, so that's my explanation. So yeah. So when were you diagnosed with FA, um, to start with, and I guess how did that impact your life early on?  

[00:04:34] Leah: Yep. So I was diagnosed with FA when I was 17. Wow. So 24 years ago. I am 41 now. So yeah, 24 , is that right? Yeah, yeah, yeah, yeah. . Yeah. 

[00:04:49] So the end of year 12, um, so during year 12, maybe year 11 as well, I was feeling a little bit unsteady on my feet. So in particular. Walking up and down stairs. So at my high school, it was like three stories high. So I had to walk up and down stairs all day. And I always had to hold on to a rail, um, to feel safe. 

[00:05:21] So I told mom and mom thought that maybe I had an ear infection, which was quite common and easy. So she took me to the GP and luckily my GP was quite thorough and he noticed that there were a few things that didn't look right neurologically. 

[00:05:49] So he referred me on to a neurologist, and then after I completed lots of different tests, which I'm sure you've been through, so nerve tests and I don't know, 5 million tests. Eventually, they tested my DNA and it came back as F. A. Um,  

[00:06:14] Teisha: yeah. That's huge. And that's so young. I was 22 processing that with M. S. 

[00:06:20] And, but 17, that like, that's the next level, you know, you're still in school and all. So, yeah, did it. How did you cope with that?  

[00:06:32] Leah: Well, I guess at the beginning, I went straight into denial. So, I just pretended that I wasn't there, which I think was a good thing. I don't think the process was bad. Um, I had applied for uni in Geelong because I was from Ballarat. 

[00:06:53] So I'd applied for uni, I was moving out of home, doing all that stuff. So I just kept on going. And yeah, I just pretended that it wasn't there. I think I went to the FA clinic in Melbourne once. And I soon realised that I didn't like it, so I didn't go back for about 10 years. Wow. Yeah, so I just kept going with life really, didn't deal with it at all. 

[00:07:25] Teisha: Yeah, but I mean, as you say, there's no right or wrong, you know, as to how to respond to that. And that's worked for you in terms of, so your 20s were pretty good, you know? They  

[00:07:39] Leah: were, and I look back on it and I don't regret Any of it, the way I dealt with it, like I, it did not stop me from doing anything. I still went out every weekend during uni and drank alcohol and did all that crazy stuff and ate really bad food and partied way too much and yeah, and I don't regret any of it. 

[00:08:06] Teisha: No, so at uni, so share with us, what did you study and then what did you begin your career in?  

[00:08:13] Leah: Yeah, so I studied primary school teaching. So, I'm a teacher, all I used to be. Um, I finished uni and then went straight into grade 1 2. So I taught them for a few years and then I taught Peresh. And then, yeah. I got married to my own kids, so I didn't teach anymore. 

[00:08:39] Teisha: Okay. Okay. And so you've got two children and a beautiful husband.  

[00:08:45] Leah: Yep. So I got married quite young. So I met Joel when I was 21. And we got married at 25, and then had Mila, my daughter, at 26, and then Chad at 28. So yeah, Mila's 15 now, and Chad's  

[00:09:09] Teisha: nearly 13. Okay. And so how did that impact FA? Like having your children and during that time, because I'm, I don't have children, but I'm assuming that would be exhausting, um, during that time. 

[00:09:22] Yeah, so  

[00:09:23] Leah: it was exhausting and I guess, so during my pregnancy with Mila, I was still trying to be really, really strong, like physically strong, but I was so tired and so I ended up having Mila at 28 weeks, which was way too early, so 12 weeks early. And I look back on it now and maybe that happened because I was trying so hard to go to the gym every single day for FA to stay strong. 

[00:10:03] And I was working full time and I just overdid it. And yeah, so Mila was born really early and very unwell, but we got through that. So yeah, having, having kids and, uh, Condition is tricky, I guess, but it's what, I don't know, it was my normal. So,  

[00:10:25] Teisha: yeah, that's great. And in terms of then Joel, like he knew you had your, you know, FA when you met. 

[00:10:34] So how did that impact things?  

[00:10:37] Leah: Um, so yeah, Joel knew when we first got together, which was great. Because my condition is genetic, there is a chance that, or there was a chance that if I had kids, they'd have it as well. So my mum and dad both carry the FA gene and then there's a one in four chance that your kids will have the condition. 

[00:11:05] So I got it, whereas my siblings don't have it. Um, so when I met Joel, he was Tested for the gene. I wanted him to be tested and thank goodness he doesn't carry it. So that means that our kids can't have FA. . Um, they may or they will carry it. So that means that when they're old enough to have partners and if they wanna have kids, they might get their partner checked. 

[00:11:40] Mm-Hmm, that gene. So one E 100 people are carriers, so it's really common to be carrier.  

[00:11:48] Teisha: Yeah. Yeah. It's amazing, isn't it? Because I'd never heard of it until I came across you. So  

[00:11:54] Leah: yeah.  

[00:11:55] Teisha: Yeah. So that is common. So now, um, you said, you know, FA is the norm, you know, in your household. So how does it impact life now? 

[00:12:06] So, you know, your day to day, your, yeah.  

[00:12:10] Leah: Bye. I guess so it, it has gotten worse. Mm-Hmm. . Um, so from the age of 17 till about, I'd say 23, there weren't really many symptoms. Mm-Hmm. . Then when I got married, I was struggling to walk a little bit, like walking down the aisle. I made sure I held onto my mom really, really tight. 

[00:12:36] Mm-Hmm. . Um, and then when I had the kids, I relied on their pram. A lot, which was great because I was still in denial. So I was like, Oh no, there's nothing wrong. I'm just holding on to a pram a lot. Um, and then, so when I was 30, I broke my ankle and that was like the game changer in my life. So I realized that there was something going on, or I didn't realize I accepted that there was something else going on and I needed a bit of help. 

[00:13:17] And so at 30 is when I started using a walking frame. I use that. I still use one now a lot, but now, so I also use a wheelchair at home. Not all the time. Um, And I could choose not to. It makes my life easier and I can get things done. So I can get the washing done and make the beds and, you know, change the bin bag and do all those things really quick. 

[00:13:54] Whereas if I'm walking, it takes forever and it's a bit unsafe. Um, so yeah, day to day I'd say FIFX, everything I do.  

[00:14:07] Teisha: Yeah, yeah. So there's no escaping that. And how, how do the kids cope with that?  

[00:14:13] Leah: Yeah. So again, it's the kids normal. They're used to this. Um, it's the way their mum is and it's the way I've always been. 

[00:14:21] So I never forget when my son was a lot younger, when he was about five, he saw someone walking in the street and they must've had a particular walk. And he said, mom, why aren't they using a walking frame? Like he thought it was strange that people didn't use them.  

[00:14:45] Teisha: Yeah, that's great.  

[00:14:47] Leah: Um, and even now, like if we go, like if we're in Melbourne in the city shopping or something, my son will always hold on to me in my scooter. 

[00:14:58] Like he'll have his hand on my shoulder or something. Like it's just their normal, and I'm their mom.  

[00:15:05] Teisha: Yeah, that's great. And that's a lot to do with you as well, because you're still doing so much, like following you and I'll do all the links later on, on Instagram. You're out and about and doing so much. 

[00:15:17] And I guess. The walking aids and all enable that?  

[00:15:22] Leah: Yeah, they do. And yeah, I use my little scooter when I'm out and yeah, it does. It allows me to do so much, like go shopping and go to different events. And yeah, I love  

[00:15:40] Teisha: it. Yeah, no, that's good. And have you struggled? Because I certainly did, you know, trying to use a walker. 

[00:15:46] I was like, nope, nope. And we've got the same physio. So I said to Claire, you find a really nice looking one, I'll use it. And then she's like, I've got one in the next week. So yeah, was that a struggle for you as well?  

[00:16:00] Leah: Oh yeah, big time. Oh my goodness. That was one of the hardest things and it still is like, I'm a little bit better now with walkers, but I'm more about safety now. 

[00:16:14] So I'm using this horrendous walker and it's not my ideal color scheme or anything, but it's very safe. So I'm good with that, but I've got this wheelchair now that I'm using inside and it's so big. And it's safe and it does what I need and it's amazing. I, uh, yeah, I shouldn't be saying it's too big cause I'm very lucky to have this kind of thing provided for me, but it's so big. 

[00:16:50] I just want something that's kind of small. So people see me and not the wheelchair.  

[00:16:57] Teisha: Yeah.  

[00:16:58] Leah: That's so true. Yeah, I struggle.  

[00:17:02] Teisha: Yeah. Yeah. And I think, um, I did, oh, it must've been, it was a few months ago and you were just in the chair and all, and you were saying, you know, you feel embarrassed and I just looked at you and you're so gorgeous. 

[00:17:15] And that just broke my heart because I was like, that's awful that we should feel like that. Um, but it's natural, you know, that's not your fault. And I think we do, you become self conscious as well. Yeah. You know, so when you worry that people are looking, they're probably not. No, they're probably checking out, Leah's got great dress sense. 

[00:17:36] She always has really cool outfits on. So they're probably checking out what nice dress you're wearing.  

[00:17:42] Leah: People are more worried about themselves. To be honest, like people are more worried about how they look and how they appear and what they're doing rather than what someone else is doing. But yeah, you can tell yourself that 5 million times, but yeah,  

[00:17:59] Teisha: it's hard. 

[00:18:00] Yeah, it is. And even seeing your reflection sometimes, you walk past the shop and I see a reflection and I'm like, who's that? Yeah. My hair going gray now and I'm trying to embrace that. That was mine? You're still hiding it better, obviously. I, I said to the, um, nurses is on a tangent, but when I was being wheeled in to get my mastectomies, I said, This has been an easy decision to cut my boobs off compared to embracing my grey. 

[00:18:28] Yeah. Yeah. That laughing as I was being wheeled in. But yeah, that, um, reflection in the mirror, sometimes you think, Oh my goodness, that's me. And it's like, but it's not, as we said, you know, you're not your, um, scooter or your walker or, you know, wheelchair, you're you. And that's what we've really. Part of this show, I really want to highlight Hurdle2Hope stories showing that we're all people, you know, we just have different conditions, doesn't change who we are. 

[00:19:00] It actually probably adds to who we are. Um, and it's so much more than FA. Um, but yeah, but I guess, do you sometimes struggle now that we're getting older? We've both lived more than half our lives. with our conditions. So do you sometimes forget what life was like before it?  

[00:19:19] Leah: Yeah, I, I think I have forgotten, to be honest. 

[00:19:24] Um, Yeah, I can't remember what it feels like to walk or run. I'm not scared to walk. Oh, you know, I can walk, but it's easy. Um, yeah, I think I have forgotten. And sometimes I think maybe that's easier. Not. Although I still dream like at night, even last night I dreamt and I was walking in my dream.  

[00:19:55] Teisha: Wow.  

[00:19:56] Leah: Sorry, that's really weird. 

[00:19:58] Teisha: Yeah, it is. It is. That is. But, um, yeah, let's see if we can translate it to real life. You know, so that is, um, and in terms of you do so much, sometimes living with these conditions, it's like a job in itself. So you're very proactive in terms of trying to stay well. Um, so what type of things do you do?  

[00:20:24] Leah: Um, so, ever since I was diagnosed, When I was 17, I've been going to a gym. 

[00:20:32] So I've done that forever. So I go to the gym twice a week. Um, and nowadays I have a physio with me. So she guides my exercises and obviously we do ones that are more specific to what I need. Um, and. I also have neurophysio with the same physio as you, twice a week. Um, and I've been seeing her for like Years and years. 

[00:21:04] So she knows me back front and I also have osteo once a week. Um, I feel that my walking, my style of walking makes my body out of alignment. So I like to realign me, relieve some aches and pains. I get really bad headaches and I think it's maybe because I hold on to a walking frame. So tight when I walk, cause I'm scared of falling over, so he relieves my headaches. 

[00:21:41] Teisha: That's great. Yeah.  

[00:21:42] Leah: They're the main things I do. I mix it up every now and then, like I, I do hydrotherapy for a bit, but then realize it's too cold  

[00:21:51] Teisha: and  

[00:21:51] Leah: too hard work.  

[00:21:53] Teisha: It is. I, I've never do, I just find it too exhausting getting to the pool and getting like, it's just. Oh, it's  

[00:22:00] Leah: such a process.  

[00:22:02] Teisha: Gotta  

[00:22:02] Leah: wash your hair 'cause it smells like clo. 

[00:22:04] Yeah, no,  

[00:22:06] Teisha: it is exhausting. Exhausting. But um, yeah, it's just, it is so much to do, but it, it's worth it, isn't it? You know, just in terms of, and I think too, do you find this, that if you are doing things, it feels better than not. Like just being participating in that process really helps.  

[00:22:27] Leah: Yeah. And. Oh yeah, like I've, I've had a week off because I've been away. 

[00:22:33] Um, and I was so down in myself because I wasn't doing much, whereas today I've already been to the gym and I've been to the osteo and I feel so much better in myself.  

[00:22:48] Teisha: Yeah. And actually, all of a sudden it went out of my head what else I was going to ask, but the whole thing about falls, I think sometimes we talk about it and you know, we're a falls risk, but I've started to have some falls and that's why I've used, you know, the Walker, especially where we are, there's rocks everywhere and all, it's just not worth the risk. 

[00:23:11] But do you find, like I, I'm always scared and I'm always holding my body so tensely the same because I'm scared now of falling. Like I hate that feeling and then I'm just anticipating for that. So it's something that you can't then escape. Do you find that?  

[00:23:25] Leah: Yeah, yeah. Um, I guess I'm probably a little bit more used to falling. 

[00:23:32] Yeah. Um, so I've been falling over for a long time. Yeah. I feel now that I've almost learned how to fall over.  

[00:23:45] Teisha: Okay.  

[00:23:46] Leah: Yeah. I kind of roll into it. That's funny. Okay. And, um, Yeah, I don't know. I just, but yeah, it's scary. And I guess that's part of the reason why I use my wheelchair more and more often, because it allows me to do stuff without thinking about it. 

[00:24:07] Teisha: Yeah. Yeah. Because it does, it tenses up your body and you don't enjoy what you're doing. And then you're looking at the ground and it's so disgusting looking down. I'm always  

[00:24:18] Leah: looking at the ground. It's so annoying.  

[00:24:22] Teisha: Yeah. Um, and the other thing I just wanted to touch on as well, because we've also had this shared experience, my speech went, you know, for, for a year, I was going to do this podcast started a year or so ago, but I couldn't, I literally lost my voice, the muscle above my voice box seized up. 

[00:24:41] They think through the trauma of everything that happened. So I couldn't get more than a couple of words out. And now. I still struggle. Like, I don't sound like me or like I, it's just, yeah, so it goes. I think you sound absolutely amazing. I thought you were going to say, I don't sound different. You sound so good. 

[00:25:01] Oh, thank you. Because I do, I do all my exercises. I see a speech therapist and everything. And some days it's not good, other days, but I'm being understood. But my goodness, what an amazing Eye opening experience not being able to talk the same years. It was horrendous how I was treated like at shops and stuff. 

[00:25:22] There was this assumption about cognitively what I was like as well. So has FA impacted your speech as well? Yes, it  

[00:25:31] Leah: has. So I don't really know exactly what it does, but I'm assuming it affects the muscles or something or the, I don't know, but I definitely speak slower because I need to make sure I really articulate words and sounds and otherwise everyone says, what, what, what, what to say. 

[00:26:00] It's hard. Um, and yeah, it is meant to get worse as I get older. So that, that's scary. And my voice was one thing, or my speech was one thing that, I don't know, I guess I was really, really paranoid about it for a long time. Like,  

[00:26:25] Teisha: yeah.  

[00:26:26] Leah: Maybe in denial, I found that harder to accept than the walking ability. 

[00:26:34] Um, but I don't know, at the moment, I'm okay with that. Like I speak slowly, but I  

[00:26:45] Teisha: don't know. You're so clear. Yeah, it's easy, very easy to understand, but. I find I, I struggled to  

[00:26:53] Leah: keep up with people's conversations. So. If I go out for dinner with a group of girls. I'd rather sit there and listen rather than join the conversation because they talk so fast, I can't keep up. 

[00:27:12] Teisha: Yeah. Yeah. And I think, yeah. And that's what my speech therapist, I said, she listens, she'll be listening to this episode to them and, you know, critiques and she's like, you're talking so fast. And I do naturally. So I'm trying to bring it to her. back. Um, so it's not straining my muscles as much, but yeah, it's hard and it nearly broke me. 

[00:27:35] My, like I'd been through so much with the cancer and you know, MS and stuff, but it was like the last straw when the voice went, I was like, are you serious? Like what else? So it is hard. Yeah. It's really, really tough. Now I was going to then sort of talk about, because you do so much in the space of creating awareness for FA, um, which is amazing because I certainly don't do that. 

[00:28:06] Um, you know, with MA, like I try and do stuff. Yes, you do. I wrote my book and stuff, so I guess. Yeah, well, I think so. But not at the level you do. Um, So we'll talk about that a bit, but I guess too, you know, us talking about being defined by our illness. Do you sometimes find that hard? Like you're immersed in the FA world, so you then try to separate yourself a little bit like that. 

[00:28:34] Do you find that difficult? I do.  

[00:28:38] Leah: Um, but I find it's a hard one. Like people say you can't be defined. Defined by illness, but in a way I kind of am. And I have no choice. And it's not a bad thing. Like I'm okay with that, but everything I do. Oh, not everything, but most things are related to FA or I've got to think about FA or like, I don't know, cooking dinner. 

[00:29:17] Of course, it's going to be something to do with FA because I've got to modify everything to make it able, to make myself able. And I don't know, like, yeah, I find it really hard, this one. I think, um, I can go on holidays and stuff, but FA comes with me, so I can't separate. You know, the holiday in F. A. 

[00:29:47] because it's right there. It's worse when I'm on holiday because it's in an unfamiliar space.  

[00:29:54] Teisha: Yeah, that's true. That's true. And you're right. You're right. I think sometimes It's reminding ourselves that there's other parts of ourselves. So yes, I live with MS. Yes, I live with cancer, but there's also other roles I play. 

[00:30:11] There's other qualities I have.  

[00:30:14] Leah: Yeah. Yeah. And yeah, you're right with that. Yeah.  

[00:30:17] Teisha: Yeah. And in terms of then what you do, like I see on Instagram, there's different events on and there's, you know, different things that you do to create awareness, which is so important because, um, yeah, not so. Colman, you know, you said one in 100 people carry the gene, so it is out there. 

[00:30:38] Um, but people don't know about it. So yeah, what are some of those events that you're involved in?  

[00:30:44] Leah: Um, so I'm an FA ambassador, so for FARA, which is Friedrich's Ataxia Research Association. So I'm an ambassador for them, along with like five other people. We kind of help organize events, whether that be a gala ball or a walk or a ride or a campaign for something or I don't know. 

[00:31:15] Um, we also put ourselves out there to be able to be contacted by newly diagnosed patients. So we provide our phone number, email address, everything to our doctors. So if there is a young girl, like 10 year old girl that's diagnosed, her mum or dad might want to reach out and chat with us or she might want to. 

[00:31:43] So I do a lot of that. Um, uh, I've got, yeah, I've got a brand myself that I, Created and raised the winners for FAM, raised about 25, 000. So that was good. That's amazing, Leah. So what was that? Was that your  

[00:32:06] Teisha: The drink?  

[00:32:07] Leah: Yeah, so it was Reusable Coffee Cups and Drink Bottles. So I guess it all started because I love getting a takeaway coffee, but I always spill it. 

[00:32:20] So I wanted to I designed a cup that wouldn't spill, and it wouldn't spill when I drank it because I found that a lot of reasonable cups, they look really pretty, but every time you drink out of it, they spill and dribble and whatever. So I designed a cup that was legal friendly and 5 from the sale of each one went to FA Research. 

[00:32:48] Teisha: Wow, that's amazing. That's, that's huge. That's huge. And so how did you then, like, with no longer teaching and all, does that ever frustrate you that that's had an impact? Like, how do you cope with that?  

[00:33:05] Leah: Yeah, so, um, I, I guess I stopped teaching when I had the kids, but then I wanted to go back. So I went back and did some emergency teaching work and I found it to be really hard, as in physically hard, but Just exhausting. 

[00:33:27] So I would teach for one day and I was so tired I could barely even see out of my eyes. So that's a symptom of FA as well is major fatigue.  

[00:33:41] Teisha: Okay.  

[00:33:41] Leah: Um, yeah, so I decided on my own terms that I would retire from teaching. So I never wanted someone to say to me, You can't teach anymore. So I'm like, okay, before that happens, I'm going to retire myself. 

[00:34:03] So I'm okay with that. So I'm a retired teacher. I hope  

[00:34:09] Teisha: they gave you a big package. 

[00:34:13] No, that's good. And that's, that's very empowering, isn't it? You've made the decision. You haven't been, you know, As you said, us to leave. So that's really good. And gosh, your life is very full and it's all about prioritizing our wellbeing, you know, and that means big changes. And a lot of people listening, we do have to change our careers. 

[00:34:34] I mean, I started working at Telstra in Melbourne, head office. I was, you know, traveling all the time. I was living in South Bank, life's so different, but you sort of go with it and think, well, how do I. Support myself financially, but still prioritize my wellbeing. So you've done that, which is really good. 

[00:34:55] So, and you mentioned, you know, that life, you know, the, your condition FA is progressive. So how do you process that? We're both here, sitting here, living with unknown futures, you know, and that is scary. So how do you, you know, cope with that? Yeah.  

[00:35:16] Leah: Um, so yeah, I guess it is a bit scary thinking about, but I always say to people, I've accepted FA, That doesn't mean I've given up or given up hope. 

[00:35:33] So I've accepted that I need to deal with it. That's the way it is. Whatever. But I will keep trying new things, keep doing everything I can do. And to be honest, I feel so healthy. So I, I can't walk very well. That's all right. Um, Yeah, I, I feel great. And I feel like my life is just gonna keep, I don't know, keep being amazing. 

[00:36:06] I  

[00:36:07] Teisha: don't know. Leah, that is so good. I'm like big smile and nodding, nodding, nodding, because that's what I talk about. Like, accept what is now, but don't give up hope for the future because we don't know what that future is. So, and that's what MS taught me. And I'm bringing that to the table with stage four breast cancer. 

[00:36:28] I'm not looking at the statistics. I'm like, right, you know, I've got it. I need to get rid of my boobs. I need to though, stay healthy, do everything I can that's in my control, and then we'll see what happens. So I love it. Yeah, that's  

[00:36:43] Leah: great. And there's, there's so much research being done and I always say that if there's a cure for FA, then great. 

[00:36:54] But if there isn't, that's okay too. If there's little treatments along the way, I don't care if I've got FA. If I can treat the symptoms, whatever.  

[00:37:06] Teisha: Yeah, no, that's great. That's great. And, and we don't know, and that's why we do have to go from hurdle to hope. You can be my, you can be my brand ambassador as well. 

[00:37:20] Because that's exactly what it is. And, you know, and I think regardless of people listening and they don't have a health condition, but they're in a, crappy position at the moment, you know, deal with that and accept the reality of that, but don't give up hope for the future. However, that is going to be, you'll still be able to cope with it. 

[00:37:42] And you could be attracting really amazing experiences. And so what's on The agenda for you. So have you got any more exciting projects or like, are you doing more of your social media stuff? I noticed that you were, were you working with people with social media? Yeah,  

[00:38:00] Leah: it's my managing different, um, Businesses, social media, because that's really flexible and that's something I can do at home or in the car when I'm waiting for the kids at school, um, Something very exciting is not really to do with work, but we are going to Japan in September. 

[00:38:26] Wow. So, yeah, that's really big for me. So, um, I, I'm a bit scared of holidays because I, I don't know, it's just a major process going on the aeroplane and having a wheelchair and, um, yeah, well, it just. That's a whole nother podcast really is traveling with a disability. Yeah. Yeah, but no, it'd be very exciting. 

[00:38:54] So I'm looking forward to that one in September. That's  

[00:38:58] Teisha: great. That'd be fantastic. It's a place to go at the moment. I've known quite a few people have been there and recently, so it's great. Yeah. Well, everyone's  

[00:39:07] Leah: saying it's very clean and very friendly, very safe. So I'm like, great.  

[00:39:13] Teisha: Yeah, that's what we want. 

[00:39:14] Leah: I'll let you know how accessible it is when I get back.  

[00:39:18] Teisha: Yeah, yeah. I can't travel. No one's going to insure me with stage four cancer, DMS, I'm like, you know, but that's all right. We're, we're sitting on our land. Don't need to do much.  

[00:39:30] Leah: No one, no one insures me either.  

[00:39:33] Teisha: Yeah, it's hard, isn't it? It's  

[00:39:35] Leah: not fair. 

[00:39:35] It's like,  

[00:39:36] Teisha: yeah, I'm sorry.  

[00:39:39] Leah: A few times we've been to Bali and, you know, going to a third world country, it's a bit scary thinking if something happens and, yeah.  

[00:39:52] Teisha: Yeah, I don't get it because we're not doing all the scary things that people can run and jump out of plane, you know, that and we don't. I'm just sitting by the pool really in Bali. 

[00:40:05] Just watching. Yeah. So that's all right. No, that's great. So for people who want to connect with you, so I don't know if you want to share your Instagram or any other way, you know, if someone knows someone who has FA to get in contact. So what's the best  

[00:40:24] Leah: way? I, I'm on Instagram a lot. Um, my awareness or FA page is being. 

[00:40:33] underscore Leah, being Leah. Um, and yeah, people look at that. There are lots of different experiences or, um, even message me on there. I'm pretty responsive to messages. Um,  

[00:40:52] Teisha: yeah. No, that's great. That's great. And Yeah, thank you so much. You know, I wrote down your name when I decided I wanted to start doing interviews. 

[00:41:02] I thought you embodied Hurdle2Hope and now I'm just so excited. So I will be using that soundbite of you talking about, you know, accepting the now, but not giving up hope for the future because there's nothing, no other, You know, bits that people remember that is so insightful and important. Um, so thank you. 

[00:41:24] Thank you for sharing your story and being so open because it can be hard doing that, so I really appreciate your time. Yeah, pleasure. Thank you. You're welcome. 

[00:41:41] So, I hope you enjoyed that episode as much as I did. I love chatting to Leah. Leah just exudes such beautiful energy. And thank you Have a look on my Instagram page at Hurdle2Hope with the number 2 and yeah, you'll see a picture of Leah and you'll see what I mean. She's just got such beautiful energy and she has had to deal with so much from such a young age. 

[00:42:12] I mean I was 22 when diagnosed with MS and I I thought that was young, and it is young, but dealing with something from a 17 year old is so full on, but she's still had an incredible life. Her life is so full. I really encourage you to follow Leah on her Instagram page at being. Leah. I'll also put all of those links in the show notes of this episode. 

[00:42:45] So that's all from me. I hope you have a great week. If you're not already, do follow me on Instagram. I've been sharing lots as to my world now on our beautiful property. Um, and I am absolutely loving life here. I'll also put in a link in in the show notes of our newsletter sign up. Otherwise just head to the website hurdle2hope. 

[00:43:16] com forward slash newsletter hurdle2hope with the number two sign up and then we can stay in contact. Have a great week and we'll chat really soon. Thank you so much for joining me today on Wellbeing Interrupted. If today's episode inspired you or you think it could help others, please share it by tagging at Hurdle2Hope in your Instagram stories or just by telling a friend about it. 

[00:43:46] 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 at Hurdle2Hope for more insights. 

[00:44:11] I'd love to see you there. Always remember to thrive after a life changing diagnosis. Your mindset is everything.