Disabled Girls Who Lift

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E28: There is Hope for Ataxia w/Courtney Ng

by DGWL
July 13th 2020
00:51:58
Description

It can sometimes become lonely and confusing to live with a rare, chronic disease, or to not be diagnosed at all. Today we speak with Courtney Ng, co-founder of Hope for Ataxia, a grassroots organi... More

this is disabled girls who lift? We are reclaiming what's rightfully ours. One podcast at a time? It's mary Beth Chloe and Marcia bringing you the thoughts and unpopular topics to get you out of that. A bliss comfort zone. Mm hmm. Mhm. Mhm Hello. Hello folks, welcome to yet another episode of disabled girls who lift. Thanks again for joining us. Today. We have myself, marcie a from south florida. Unfortunately our other two co host couldn't make it. That's mary Beth we love her and Khloe, we love her just as much everybody the same. There's no favorites. Right? Anyways, today we're talking about Ataxia and we have another Canadian friends. So that's two Canadians and counting on disabled girls who live so everyone can introduce you to Courtney Ng, who is actually a co founder of Hope for Ataxia where they're raising awareness globally. Um, so thanks for coming Courtney. Great, thank you so much for having me. I'm very excited. Um, thank you for the introduction.

So like I said, um, I am the co founder of hope for ataxia. So we started it in late 2018, it was started as a conversation between friends and it ignited into a tangible idea. And then you know, this organization was created and we have things like support groups, we have social media, we have fundraising campaigns and awareness campaigns. Um, so we're really excited for the future. Awesome. That sounds awesome. So he said 2018. Yeah, so this is going on your second year. So I mean, I'm sure you had like an aim and goals and thoughts and plans and then Covid happened. How how has that changed your plans for hope for Ataxia? Yeah. So we're actually going to have our first fundraiser for um, in partnership with the taxi Canada. And it was called the taxi a Burpee challenge. So the idea was that every Virpi you do, you also raise or for every dollar you raise, you do a Burpee.

So I've had people say, can I just, you know, pay someone? So I don't have to do burpees and like that point, that's the point. Uh, um, and so all the funds are going to go to a taxi Canada. And so there are the national organization within Canada that uh, funds research awareness, things like that. Um, and we're, we have to move post them in person portion of that. Um, so it's going to move to next year but people can still definitely donate online. Okay. Are you going to try to have an online version of this event or if you kind of just totally saving it for next year. Yeah, we're gonna totally just move into next year and there's a lot of things that we want to do in person. We want to have like a big sale as well as part of the fundraising. Um, so we want to have a ability to do that. Yeah, Yeah. That stinks. And that was gonna be in Toronto or you're from? Yeah, West of the city just in Mississauga.

Okay, so I'm very Canada ignorant, so Toronto in english speaking, yeah in big city, yes, okay, alright, just make sure I'm painting the right picture. Um so do you find that most of the people in your group are from your area or are they everywhere? They're everywhere. We have a lot of people from the States, one of the things that mixes really successful is that we've done them um we've we have online support groups, so everything is through teleconferences where there is, it's always been online, like webinar anything that's before, covid you're already doing okay, okay, hipsters uh we've connected with people through like facebook and different social media platforms, so um it's been great, we've met people from overseas like Australia, europe, you know, Canada us. So it's it's been great to have a sort of global awareness that we're trying to raise and as far as Toronto goes, is it um is it accessible?

How's it work out living in Toronto? Yeah, um in the downtown core, I would say that parts of it are um I think with any major city um you know, there are, you know, things but you have to find them, they're not it's not like taking the subway in new york like um sure there's elevators but only on this lane at this stop and the ST uh exactly, it's like, well okay, how do I find that, I've never been here before, so it's a little bit of a scavenger hunt I guess to really look out for those things. That's pretty relatable to what we're going through, I think. So is your group also, is it more of awareness and support or are you trying to get things more accessible or make assistance programs more accessible? Are you are you involved in that kind of projects too? Right. Yeah, so we're really focused on raising a taxi awareness globally. Um and it's more so uh focused on raising awareness and funding, support and funding socialization.

So um with Ataxia, it's a very rare condition. So, you know, according to the National Tax Foundation, which is the national organization in the US, there's about 150 people with hereditary or sporadic Ataxia. Um and then in Canada it's like 4 to 5% of that number, so it's gonna last. So you know, um I don't know what the stats are in other countries because some of the information isn't as available. Um and that just shows you how rare it is. So like step one, it's like, hi we exist, let's find each other. Yeah, exactly. There's groups that are made for that and it's nice to be able to know what exists in your area and you can connect people to things that exist, but it's actually really hard. It's actually really hard to just exist? Step one, you know, to find people that are living your life and then figure out, okay, how do I get what I need where I met.

Exactly, overwhelming. Exactly. Especially, you know, because when you're diagnosed with something like this, it's, you know, it's progressive and it's degenerative. So there is no cure, It's a chronic illness. And so, um, it's difficult. You know, you can be diagnosed when you're young can be diagnosed and older age as well. And to have that change in that adjustment in your life can really altering and it's really isolating you not to have anyone who can empathize or to understand what it's what you're going through, right? And as far as, so you mentioned, you could be diagnosed with different ages. Do our most people, you know, when they come out the womb, there like something's up with this baby or do you hit like 20? And they're like, oh, by the way, Or is it like 50s? Where are you talking about? Yeah, great question. Yeah. So it really depends on the type of a taxi. So there is a specific type, um, called 80.

So it's a taxi telling Jax tika. Um, and it's mostly occurs in Children. So, like toddlers, um, very young Children. And so parents might notice that, you know, the child's like falling over or there's some symptoms. And so they get them checked out and then, and then it goes from there in terms of a diagnosis and things. Um, For me, um, I've had in my whole life, but I didn't get symptoms until I was about 19. You can also get symptoms at a young adult age. Um It's really when you start noticing things like, you might be slurring or things that used to be doing were easy and it was, you know, second even think about it and now they're more difficult, like running or, or you're just more tired, things like that. Um and then if, when you're older, you could be, uh there could be something like, you know, it could be required as well.

So, um, if you were in any sort of traumatic injury, like a brain trauma, um anything that affects the cerebellum, that part of the brain, um you can have, you can also have a taxi that way as well. Yeah, it's really interesting because, like, in, so I'm a physical therapist, and when we're in school, they really teach us in general, like, alright, this is part of the brains for, this is part of the brains for that, and like, oh yeah, this could happen here and then, but in general comes to the tax. Yeah, it was kind of like a symptom, so it's like, oh, there's Parkinson's, there's M. S. And then maybe it looks like this, and it was like listed, you know, like under everything else. So now that I'm out in the world and on the internet, and people like, you are messaging us, like, hey, I have this, I'm like, holy sh it, this is like a whole thing by itself and it freaking sucks by itself to like why be then downplaying this. Like, I'm just totally mind blown that that this could be its own thing.

Is it fairly new that these, like, it's a genetic testing that's new and they just found it and that's why you have these numbers now. Um I would say no, that is not fairly new. I think testing has developed um It's better now in terms of, Let's say someone's um getting a genetic panel uh that sort of test, they might have developed a better one or different one now versus like 15 years ago. So then there and there's like over 60 types of a taxi. So a taxi is sort of almost like an umbrella of like movement to stores. And then within that you have a bunch of different types of it, right? So it could be um a genetic version or it can be acquired. So um in terms of how early it was, I think it, it started, I would say it's hard, I'm not sure of the exact numbers, but I wouldn't say it's not, it's recent.

I would think. So there's a lot of things that are moving along pretty pretty quickly in the medical field even from the time that I went to school and I graduated um like six years ago from the time then to now. I've already learned tons of things that didn't even exist when I was in school. So I can only imagine that's changing. Is there a big delay for you and the people that you're meeting um for treatment? Because I feel like me as a man, I'm on the side of medical professional and I could see all right things are not always gonna be the same. I won't always understand everything. But then I then I am the patient and I see a medical professional and they don't have that mindset at all. They're just like, I know things right. Is that happening to you or or you know, to your people in your group in general? Yeah. So in terms of um, I guess getting diagnosed, it varies like for me, I was really lucky and it didn't take me very long.

So I got diagnosed within a year. Um, so with them that year I was sent to different specialists and it was low waiting game, You know, waiting for the genetics has to come back for me and things like that. But um, it really depends on the type of ataxia. I do think that, you know, we are sometimes in some cases we know more than medical professionals. Um because we're the experts of our own lives. Exactly. Oh my gosh, exactly where the experts of our own lives. Like I know that okay. You think I could squat heavy. That's nice. But I know two years ago when I was down at the bottom, I didn't feel like this or I know that the next day, you know, my butt wouldn't be spasming for half the day. Like, you know, these little things that you're living, you know that. Mm hmm. And just have somebody tell you like, like, so for me, that's pretty amazing that in under a year you got, um, genetic testing. I don't know how health insurance works. Um, but for me, the only reason I got to genetic testing, which you didn't answer my questions, You know, I still don't have a diagnosis was because I had good quote unquote health insurance.

Mm So if I didn't have government insurance because my husband's jerry, I wouldn't have gotten it. Yeah. So I'm sure that's a barrier for a lot of people that have a genetic reason for their attacks here. Yeah, definitely. I mean, um, I'm being Canada is, you know, definitely different than being in the States in terms of access to the testing. Um, so what happened was for genetic says they told me it would cost $7000. Mine was 17 grand by the way. Oh wow. Oh, wow. Yeah. Um, So I remember mine was $7,000. And um, they had to write a letter to the Ministry of Health so that it went to the States and that it was covered through orange through our free healthcare. Otherwise if it wasn't covered that, I would pay out of pocket and so you know for a lot of people you know that really racks up because you know I lucked out you know once you're next has you know can tell you what you have but then it can come back and be like well you know you have nothing on here, you can do another one, another one you know so you know it really adds up then and especially if you don't have you know those resources it can it's really difficult.

Yeah. It's it's really sad that this is such a barrier to just getting the answer you need and not necessarily because we're chasing like a cure right? We're at least just tracing the treatment. Yeah. How can you, you don't know what you have you don't know what you need to do. So it's it's really sad there's such a big barrier. So yeah mine was $17,000. The only reason I didn't pay any of that. It's because I had good insurance. So if I had the crappy insurance that I had before, number one it probably wouldn't have gotten approved. But number two if it did I would have had to pay 40% of that cost. Oh wow that's still a lot. That's a lot. So can you imagine how many people are out there who might not even have insurance at. Oh exactly. Yeah. I mean you know that's the thing like we have the numbers that we have our our people that we know of. You know that that that have the condition? But then there are some people that are misdiagnosed or underdiagnosed right?

Um So the numbers could be a little higher, you know we don't know. Yeah. No that's very true and I'm sure there's people that or so I don't know if you listen to Christie's episode. It was a little earlier, it might have been like the fourth or fifth. Um But she has rheumatoid arthritis. She she didn't get diagnosed until like you I think 19 ish twenties. Yeah but when she looks back in her life she was like yo duh. Yeah I really did that. I thought that makes so much sense. Like so many things that I thought um you know I thought were just normal everyday currencies for me but after I got diagnosed I was like oh that's why I'm always tired. You know like academic sense why always need like naps and seven, you know like why I'm always like doesn't matter how I used to lift and I used to work out so I was like it doesn't matter how much except I still seem to be really tired and out of breath you know is this part of like what I'm going through like there were things like that for sure.

Yeah. That's wild and once you actually got your answer like okay this is what's happening. Did your how you define yourself change? Yeah. So um I have our neurologists that I'm going to save her life and he's gonna essentially monitor my condition. Um But the doctors don't really have a solution or cure. There really isn't any here for a tax is more for the symptoms. So over time, you know, people can have symptoms like slur speech. They can have, like, tremors, gait abnormalities, like their fine motor skills might deteriorate, things might happen, they might need walking aids um over time. So, you know, I know the advice that was given to me was make sure you exercise and, you know, continue seeing a neurologist drink a lot of water and then schedule your checkups by. Yeah, it's like, I was like, okay, so really it's it's up to me to really, you know, make that sort of change and experiment with different things that might work for me.

So, whether it's experimenting with my diet, I'm experimenting with exercise, you know, seeing what works for me, Right? And as far as you pulling up to somebody saying, hi, I have this, I am what what would you call yourself? A spoon me, chronically ill disabled? You say differently abled. Do you say nothing at all? Do you not disclose it? So it's it's interesting because I think I'm a bit of a spoon e in the sense that um you know, I guess I am I have the fatigue. I don't have a chronic pain knock on wood. Um But it's also a bit of invisible illness for me at this stage of my life because I was diagnosed much younger and it was sort of it was almost a coincidence how I got diagnosed because I had gone to the doctor for something unrelated. So at this point it's still working towards a lot of acceptance and so a lot of time I can sort of pass through life without you know, really being seen as disabled or having a condition.

So I would I guess I would consider myself more so a spoon. E but that might change, you know, in like 5-10 years, you know, as my symptoms progress. It's it's an interesting conversation too because I know that so when we first started this podcast mary Beth and Chloe and I have never met were just like angry people on the internet like renting with each other. Um And then so when I, the funny thing is when I first started talking to mary Beth online, I just found her literally because I was scrolling through instagram and I saw someone dead lifting with one arm and I'm like who the fucky is this? And like that's how I started messaging her. And then somewhere along the line I started having issues and that's when I started like figuring out like okay ah I think I'll call myself with spooning out and like okay am I disabled? And I would have these conversations back and forth with her and honestly like Yeah. Yeah I mean I I have a job, I'm still disabled like I can I can cook dinner.

I still think I'm disabled, like I can still lift weights and I still I think I'm disabled just because it's not an obvious thing that I might have to disclose it for you, I might have to disclose it for you to realize that. I don't think that makes it any. That's true. Yeah and I think um you know part of you know hope for talk to spreading awareness. So you know I love to be able to just inform people of what attacks it is if they notice something about me um because I think that there's a lack of knowledge um around it as a whole and so I think you know the more people understand and realize what it is and there's less misconceptions. Yeah and I mean obviously a lot of misconceptions come from like who we are as a society because that's what that's what we taught everyone, right? Like disabled people stay home, they don't work there in chairs, they can't do anything and like that's the picture.

So as soon as you say something outside of that they're like uh that's right um and then it doesn't get any better being a woman and then just get any better being a woman of color at all. So we have all these layers to always deal with. So I'm wondering, you said you had to experiment with different things. How how is the experiment and gone? It's been a couple of years, right? Yeah. So um so my partner Mark and I, we both run home for taxes. So we we've been started this new thing. We've been working out every day. So you've been doing um sort of regular circuit. We've been doing push ups and v ups and we've been doing squats and we're doing reps and everything and I go for walks and I'm finding that that helps me um in terms of just keeping my muscles going. Yeah, I think it's really important for them not to atrophy.

Um and we do boxing, he has boxing classes. Boxing is nice. And have you gotten into a lot of weight lifting or what else is there yoga dance? So I haven't um done yoga or dance, but I used to lift. So um I used to like squad rex and you know, like dead list and all of that. Um and then, and then with my condition was just harder and it got harder because I would involuntarily twist with like a huge weight on my body, which is not great for me. So um you know, I just didn't modify and so I just turned it back in terms of, I mean, well or just in terms of how you set up the way that you're lifting or what you're listening, there's certain things that you won't do now, I'm guessing. Yeah, I mean um you know, for me it's definitely you know, making sure I have even balanced, so if I'm carrying something that's really heavy symbolism might help to have some weight on my body to feel more grounded.

Um But you know, making sure that I just you know, don't have too much of a heavyweight that I'm lifting. Um and making sure that I have stability in my core. Um I think that's been really important for me in terms of my balance. Yeah. Yeah, that's a tricky one. I know personally for me there's a lot of few things here and there that that out that I've learned that work best. So um besides lifting, I also do Strongman and they're moving events, so farmers carry you pick up something, you have to pretty much briskly walk um Yo carries like on your back. Uh huh. When I first started doing it, my legs would always cross, I hit the ground every time I don't wear those feet were every time. So then I figured out, okay, like as a therapist, I'm like thinking okay they taught us that stroke patients don't know where the feet are and we could put a weight on it, maybe I'll try that, I don't know where my feet are and then I found that that works for me. Mhm. Just something that simple, so there's like a lot of little tweaks and like there's always not everything has to be a hard no, maybe it's like, maybe let's figure this out.

Yeah, exactly. There's so much great. I mean, the thing is um because there's so many different types of ataxia and they, the symptoms really vary. There's never one hard and fast rule. Like, you take this, it's gonna cure everything. Take, you know, it's going to work. So, you know, experimenting with what works for you. You know, yoga might work really well for someone, but am I not work for someone who has a mobility aid? Um So yeah, that makes sense. Um What else is there? I mean, I'm interested in your saying, so if you put if you started squatting and you had trouble with twisting. So is it like you have a lot of tone or is that more of your trying to fire muscle and you just get the wrong one? I, you know, I'm not really sure. I'm really, I'm actually not sure how it happened because I would uh I remember I was used to, you know, lifted up with the weight and and I guess like my body would just just shipped as I was getting as as moving up.

I don't know how we either had. Yeah, I know you think you're straight and they're like Courtney you're facing the wall like, oh, like that's your backside? Uh I thought I had it for you? Are you um like one side dominant or is it like a little here and there, or is it pretty equal? Um So I am a right side dominant. Um But it's it's interesting because I do test with my neurologist and I do physical as well, and sometimes that can be stronger on my left side. So if I'm like trying to hold the pose um or if I'm stepping up on a stair or something, my left, my left like might be stronger than my right and I'm able to hold better balance. So it's it's hard to uh to figure out. Yeah, I think that's the other part two when you have well, I mean, if you have just clearly one side that's weaker than you're like, all right, I need to focus on the weak side. But when you're kind of like parting it out, like my right hand's weaker in the grass, but then my left knee is less stable.

That's kind of where I am. It's like, all right. But then this foot always collapses. Uh Like you have to keep a mental note of all of these long. So, I mean, you are into fitness before for somebody else that has this long list of trying to keep track of what's what what what would be your advice for fitness? Um Yeah, so I I know what worked for me was going to physiotherapy um taking walks, I think it's it's uh that's worked for me. I know for some people that they might have more aggressive forms of taxi, it's it's different story. It's harder to have that um to be able to walk and have the same mobility. So I think it has to be taken on a case by case basis in terms of you know what they're built able to do what I think if it's possible that most people could probably start out with, like you said, a physiotherapist and they can help them figure out like this is how your body moves.

Now. Maybe from there they could figure out what what works with them in fitness. Yeah, possibly. I mean, I think um you know ataxia is is a specific condition with so many different symptoms that you know having, you know, a pt that has, you know, some knowledge of neurological conditions, whether it's something similar like Parkinson's or m. S. Something along those lines can be really helpful, definitely. I think so, I think there's probably a good starting point if someone has absolutely no idea whatsoever. Just maybe start with a medical professional and like find your body first and figure that out. But I do also wonder so Ataxia is a movement disorder. Are there other things that come along with it or you know, different types that have um for example, we just talked to someone, well her episode should be out by the time this is out and she is whole Oram syndrome, which comes with like a different shape of arms, but also tacked along with that is heart problems.

You wouldn't think that's related. So is your disorder related or you know, the genetic ones? And I don't mean the acquired ones, the genetic disorders come with something else. So, um the symptoms can range from anything from like, just like a coordination, slurred speech and then having trouble eating and swallowing, difficulty walking, tremors, even heart problems. I'm um I'm movement problems. Um and it's because there it affects the cerebellum, which is like the powerhouse of the balance and coordination of the brain. And as um the disease progresses, other parts also get affected. So that's why the symptoms can also expand as well. Yeah, so things like, you know, like swelling can be affected and you know, even heart heart problems and things like that, but with different types, it's also hard to say um with my specific type. Um I really want the lottery.

Uh so, um I have a recessive type of ataxia. So both my parents are carriers and they both had to give me the gene so that I actually show ataxia. So it's had a one in four chance of actually getting it. Um So with anything is dominant, you just have to have one copy of the gene. So what's a damaged, it's damaged gene, it's like a mutated gene essentially that's being passed down through the family, right? So you got your one in four. Uh And and like you said, it's progressive, meaning that over time it's going to change. So does it change in one direction or can you get worse and better worse and better? It's hard to say. Um I don't know. I think it's going to get worse. The rate might be slower. So um you know, I might still be walking in 20 years.

Um and then someone else is different have attacks that might not be so um It could, I think it's more the rate. Alright. There's also the chance that people probably just don't know, right? It's only a couple of 100 of you. Like, how many studies could there have been on? What happens, you know, after 30 years with it? They might just not know. Yeah. And they're still discovering types of a taxi there. So um you know, like my type is so rare. There's so many different types out there um That like you said, there's not a lot of studies and, and you know, the symptoms can be all over the board. What is your background? Like, what did you go? Did you go to school? Are you working, what do you what do you have to separate from hope from attacks? Yeah. Yeah. Yeah. So I am currently working uh work full time right now. Um I work in office drop, so I'm most exciting at a desk. Um And I went to university.

So I did psych and I did health studies. Okay. So I'm asking because I'm wondering, so in in this whole situation now you have what you had a one in four chance to get something now. You got it super career, nobody knows anything about it. So do you find yourself doing a lot of searching into research or looking things up on your own? Definitely. So when I first got diagnosed, it was tough because you know, I was 25 young asian female. Uh no one I knew had what I had. Um it originally out of Quebec. So it's named after an errant Quebec called both Quebec and that's what came from the people that were understudied. There's like, there's every five or six people, I'm not sure they're still living. So we don't even know what the end result is. Um my doctors don't know what my end result will be, what the progression is going to look like.

So it was, it was difficult because when you look online and it can be really intense can lead to like that or something. You know, when you look things up, it's always, you know, it's like, wow, so, you know, finding online communities and get connected with different people um, definitely helped definitely because it's a rare disease, um connecting with people through social media globally. Find out that there are people around the world who are also young and who are diagnosed um really helped create that connection. Yeah, definitely. I'm sure it has. I know for me, a lot of it has. So I, you know, like I said, I'm a physical therapist. So I've gone to school. I know what research is and I know how to look it up and look into it. So I I probably do every day. I'm probably looking at random articles all the time just on random stuff. Like I might see a commercial for, I don't know, a cryo tank and I'd be like, oh, is that gonna be good for me?

I'm just going public cryotherapy, muscle spasms and just like scroll like this wasn't my life before I this this this is my this is my reality now. Like I'm just always randomly looking shit up. Mm hmm. Yeah, definitely. It's like it's like now it's like, oh, you know, I'm no, look, what does this definition mean? Oh, you know, And I also think about it in terms of how other people are probably are feeling so isolated as well. And you know, the information I have, You know, I can hopefully better support other people who might have been in the same situation. I was feeling lost and confused and not knowing what to do. And it's so tough because I feel like that like that at its very core is super noble, right? Like I want to teach myself something and I'm gonna share it with other people. So they could catch up to speed would go on this journey together. Kind of of uh like super noble. But I and I really hope that like you keep on pushing there.

But it sucks because there are people that say that but what they're doing is not coming from that real place. You know? Like in the end they're just trying to sell you like a fucking diet book. You know what I mean? Yeah. That can happen I guess. Yeah. It's really nice to hear someone that actually means it I guess is what I'm trying to say. Yeah. Because it's hard, it's hard to imagine that you're that lost because you and you can because you were maybe you still are a little bit like we're not totally figured this out. Like you don't have that lost person and you go online and somebody's like, I'll help you and you go on their little clique funnel website, you sign up for their newsletter, then you get like five spammy emails every day and the next thing. You know, they're like selling you a book to sell you something to the facebook group like this. Like oh yeah. You know, it can it can be a hard to never get sometimes for sure. But how do you I mean it's a pretty rare disorder. So maybe that's how you set yourself apart. But how how do you think that you guys set yourself apart to not be okay?

Hope for a taxi is legit, they're here for us. They're not just trying to sell us something. Yeah. So I think what really makes us apart from one else is that, you know, were built the report with the people that we know and we really publish things that are from personal experiences. So we have a really great uh blog that we started called Faces of a taxi where we'll interview caregivers people with the tax and we try to share user stories. And so that's really something about us. We don't really, we don't focus on research. We don't focus on, you know, funny care, but really it's providing the support and really showing other people different stories for the pool that can relate to as well. So like what your your mission of what you're doing is very clear by the actions that you're taking like, hello, we exist. Hi, these are some stories and like that's it. I think, I think that's probably what makes it pretty clear that you guys are trying to do something good.

And I hope that that's what we show also on our pages like sure we sell some shirts, you know, like we got stickers, but at the end of the day, like we're not trying to be a clothing company, right? Like we're just trying to make a community of disabled girls that lift weights or do yoga just do some burpees or whatever wherever it is and they couldn't find anywhere else to kind of explore there, that part of themselves. So I mean, I'm glad, I'm glad, I'm glad stuff like this is popping up and I hope more of it pops up. I hope the people trying to sell ship just go well, you know, it's funny because the way I found you guys was I was looking at podcast and the disability community and I came across your website and I thought, wow, you know, you guys are really making impact and a positive impact and that's something that, you know, we really look for for hover taxi and we we do our support groups and we have speakers that come on, we look for people that, you know, are active in their inspiration, motivation.

And I think the big thing is, you know, people see people with disabilities as other as they can and we want to show that you can rise about that you can actually do more than what people will think you can do. And it's funny because it's like, yes, we ought to be inspirational, but we mean that like to ourselves, you know, like, like I'm like, you're gonna inspire me the other disabled person to know that I can do more like because inspiration porn is a different conversation, that's not what we're talking about, just so everyone's clear, just make sure that's that's pretty awesome. That that you mentioned how you found this though, but you'd be surprised and I'm sure you, you have some of that on your and how many people just messages, like, you know, you guys exist. Like I have this random disorder you were talking about in this one episode and I feel so seen like that's amazing. I mean that's so amazing if if anyone can hear this and says, oh, hey, I have a taxi to like that word starts, you know?

Yeah, because like you said before, this is a lonely place to be. It really is. Um, and you might have people around you that it's not that they don't care, but like they just can't understand what you're going through. Exactly. And I think the way society structure makes it hard for uh, that sort of dialogue to happen as well. Yeah, that's true. And, and so you mentioned your partner, you guys run home for a taxi. Do you have a support system? Do you have friends and family near you that are helping you or know what you have going on? Yeah. So I live with my parents and my mom is my, my caregiver. So she really helps me keep me on track with my diet and uh she takes books with me and so she's really involved in everything I'm going through. I actually recently told my extended family about like probably seven months ago. So it's kind of fresh there there and it took me a while, I think for me acceptance is definitely ongoing process, you know, um, for me because some, I'm experiencing some symptoms, but I know that it's progressive.

I'm accepting them as my life changes and I'm adjusting to that. There's definitely something that is not going. And I think, you know, I want to let everyone know that it's okay to be in that sort of gray area and to accept it every day. So you've just gotten into disclosing it to extended family or they kind of confused or because you're okay, like your parents are with you every day and maybe they'll catch on. Yeah, I mean, I think even even my parents when, well actually when I first got down just like, what is this? Like what is this? And it all went back to, okay, well that's why there is a war awareness. I mean no one knows what is, I told my extended family and it's hard to grasp because I don't have a mobility aid. So it's not that you can physically see the difference, it's hard to explain. Um, and I think there's that it might also be a cultural thing as well. Um, in terms of, you know, having that language of disability.

Um, and having that sort of uh, conversation as well. Um, but yeah, it was definitely difficult in, in that lacks our understanding and knowledge. And so that really made me think, okay, this is why we need to have more awareness definitely and is that is your, is mostly family in Canada or the elsewhere when you say cultural, you mean like a Western idea or eastern or whatever. I'm so lost on geography and I'm sorry. So what I mean, I hope I do. Um so um most of my family's actually overseas. I have a lot of family in Hong kong um and some of Singapore. So the current spread out on the east and in East Asia, I'm really grateful that, you know, my mom has been my greatest supporter and you know, um she's definitely been everything um loving towards me and and she's different, definitely Britain the waves as I've gone through it as well.

Yeah, that's amazing. Like I know for me and personally, I know that there's certain people in my life that don't understand my illness, didn't understand what I need out of life, didn't understand what I'm doing with my life and like created like they're not gonna hold that space for me then that's all, you know, you know, either I'll find that for myself or I'll find the in somebody else, but like the space of like needing the support of I'm going through this illness and I need some help. They're not gonna hold it for me. Yeah. And and um yeah, definitely, you know, it's it's definitely a hard for um other people as well, you know, it definitely speaks to their own experiences and you know, it can be really uncomfortable for some people can't be Yeah, but that's that's why we exist and these kind of groups exist because you can find somebody halfway across the world that's like Yeah, me too man. Exactly, exactly. Uh because it's hard, it's it's such a lonely place and you need to have that somebody or someone out there holding that space for you and if you haven't found yet out there, I hope you do because it does make all the difference.

We really can't conquer this all on our own. Yeah, I mean it helps so much to have that socialization and that someone who understands exactly what you're going through and having that connection, it means the world, you know, makes the it makes going through this journey a little bit easier. Yeah, definitely. I'm sure, I'm sure it does. I'm glad that you have your parents with you and you kind of have someone to go along that journey with you because that could be pretty scary knowing that okay, maybe this will get worse. I don't know when, I don't know how do you find yourself with a lot of anxiety on that or you're still in that because you talk about accepting it every day. Uh but does it keep you up at night? Um It doesn't keep me up at nine thankfully. Um I think um I'm very, you know happy with where I am right now and I'm really happy with uh the community we've created with hope for a taxi and that's what keeps me going. Um I think that um you know, knowing more people and and just having more knowledge, I think a lot of it is just, you know, understanding what might be coming and and you know, taking day by day.

Yeah, that's all you could do kind of try to fight piece somewhere as I know I was talking to Andrea in a different episode um and she has some of the things that I probably have, who knows? But that does keep her up at night, like she does wonder like, oh, what if they miss this? And then all of a sudden I have a heart attack, like she like she really hasn't found that. Do you have any advice for someone in that moment or in that space? I guess? See well that's a tough question. Um I think um it's it's tough for me because I I think I'm still going through it. Um So it's something that I will definitely be doing with at some point, I think, you know, having a strong support system. I mean, I'm like for me, hey, that's what I'm going to lean on is having people that I can talk to, having a family, friends that, you know, they might not understand exactly what you're going through, but having someone who's able to listen and and be there? I'm that means a lot and definitely going online, social networks, you know, people who are in the exact same situation can also provide some comfort.

Yeah, for sure. And do you find yourself seeking like mental health services or do you meditate on your own or do you journal or anything like that? So I don't meditate. Um, but I think, uh, therapy is definitely something everyone should have. I have a background and um, I really care a lot about like social work and mental health and so I think that everyone should just have a therapist I think would be great. Um, I think definitely, you know, to have someone to talk to is this great outlet. Yeah, definitely. Yeah. We, we try to explore that a little bit because there's so much also like with every intersection that you add in your life, there's like more trauma that you deal with this is trauma of disability. There's a trauma, I'm sure you encounter racism and I'm sure you encounter sexism and there's all of these things that you have to unpack and like if you don't have someone to talk to or if you feel like you need someone that day doesn't know who you are at all just to help you figure out how to get through it.

That's what therapy is great for honestly, definitely. And I think there's, uh, still sort of a bit of a stigma around that. And you know, it's all about, you know, seeking out help and and be okay with that and there's really nothing wrong with that you know. No not at all. Whatever you need there's nothing at all wrong with it. I think there's a lot of hang ups about it like oh if I see a shrink I'm not crazy like. No it's not. Everybody has, everybody has a mind and everybody's dealing with something so everyone could have their yeah um so in your or uh climbing close to one hour here so I do want to circle back to um you mentioned you have stuff online for the group for hope for Ataxia. Is this regularly scheduled stuff like every month we meet on this and talk or do you have guests or their online discussions?

How are you organized? Yeah so we have our waiver weekly support group every friday but at three and six p.m. And then every 14 weeks we'll have uh gas speakers. So we have five sessions um and we have five to accommodate different time zones that people are overseas like that. So we have from nine a.m. All the way to nine p.m. Three of five during the day and um we find people who are in the disability community who are really positive and make a positive impact. Nice. That sounds awesome. And where what's the best way for someone to find out about this stuff website. Facebook like where should they go first? Yeah definitely. So our facebook page is the best place to find it. So we are at hope for Ataxia on facebook we also website. So we have our faces of a taxi blog there. Uh we have you can set up for an inverse pro groups there as well.

Um so it's hoped for a taxi dot org and we also you can find us on instagram and twitter. We're hopeful. Ataxia. Perfect. And again, thanks for reaching out to us. I'm glad you found us. I'm glad we found you. Yeah, I do want to make it clear that once you come on this podcast, you are now a disabled girl who lifts as in the community, you are now in the family. So you want to come back and chat. You come back? Ah We do well because of this whole covid situation, we'd be doing more online things. You want to be online with us. Come hop on our instagram, whatever what have you, you want to talk about anything at all. We're here. You wanna blog on our thing, whatever you want to make a t shirt together, I don't know whatever you want, you can't get rid of us now, that's the point that yeah. Um anything I mean we talked about so many things here. Hope for Ataxia Ataxia itself a little bit about Toronto because I don't know anything about Canada, you know, disclosure identity, Mental health so many things.

But is there any like one random thing that you just wanted to get out that we missed? Mhm. Um so yeah, we've covered a lot of things and I, you know, um I don't really have anything to add, I think if you have any questions or anything you can always find us on facebook and leave us a comment. Um it was great to be on this podcast and you know, great to share my story and to be able to spread more awareness. Yeah, definitely. We all love to hear it. And if you have a taxi and have specific questions you could find Courtney and hit her up, talk to her, maybe joined the support group, maybe have a little fun finding people like you are like the I don't know if you were watching arrested development but we're like that never needs in. You're gonna find each other. Oh man. Alright, disabled girls out. Thanks for listening to disabled girls who left. We appreciate all of your support and everyone who's taken the time to show us some of don't forget to subscribe rate already, review of our channel, we're on Apple podcasts, Spotify player FM, google podcasts and more.

You can also find us on instagram at disabled girls who left. Mhm

E28: There is Hope for Ataxia w/Courtney Ng
E28: There is Hope for Ataxia w/Courtney Ng
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