Ardra Shephard: I'm Ardra Shephard and this is Tripping on Air, a place to talk shit about what it's like to have MS. Normally I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar, my friend whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you. When it comes to managing MS, there are a number of life hacks that we are sometimes left to figure out on our own. My personal entry into the world of mobility aids was confusing, intimidating, and sometimes overwhelming to the point of tears. Today we're going to talk about practical things like how do I know I need a mobility aid? What kind of mobility aid do I need? Where do I get a mobility aid? And who the heck is even going to pay for this mobility aid? Plus, we're going to talk to role leader Queen Suzanne [inaudible 00:01:06] from Prairie Velo about some very cool adaptive sports equipment as well as her role in creating a more positive customer experience for people with MS and all kinds of disabilities that might benefit from using a mobility aid. But first I want to talk about one of the less obvious obstacles to getting a mobility aid into your life, and that is navigating the stigma, the doubt, the grief, and the fear that comes with graduating to a new level of disability. All of the crap that gets in our heads and makes this process harder than it needs to be. Alex Hajjar: And it totally is harder than it needs to be, at least now, but I think it's getting easier. It's such a critical topic. Nicole's been using mobility aids for a handful of years now, but yeah, in the beginning it was kind of a nightmare for me and I'm still on a giant learning curve. Ardra Shephard: Alex, what do you remember about your feelings when Nicole first needed mobility aids? Alex Hajjar: Well, I think I was said before, or maybe not. My aunt has had MS for a number of years since the '80s, I think. And so I'm want to say I recognized any signs because I don't think I did, but I think that as drop foot became more prominent and maybe literally tripping became a more consistent event, that's when I started to think maybe it is time because my aunt uses one. So she was kind of my canary in the coal mine again to get one for Nicole actually. So I actually went out first and got one for Nicole. I got her a hiking pole. Ardra Shephard: You did she know you were doing that or were you just like, "Hey honey, I got your present." Alex Hajjar: I can't remember. I think I just came home and said, "Here, use this now." Ardra Shephard: Oh man. Alex Hajjar: And maybe it was a bit too blunt, but that's kind of my, how did modus operandi. Ardra Shephard: How did she receive that? Was it a big, big deal or was she just like cool? Alex Hajjar: I think in part she may have known that it was time and just didn't want to acknowledge it because of the stigma and the fear that comes along with it. And you can see it whether it's traveling in foreign countries where disability is almost nonexistent in some places and people stare and people stare here too, because seeing a young person with mobility aid is not a socially normalized thing. Ardra Shephard: My experience was different. I mean, everyone's experience is different, but I was really worried about what other people, and especially my husband was going to think, I mean our dynamic is that I make all of my own decisions, and I'm not super receptive to suggestions, but about anything. But I feel like when it comes to dipping my toe into mobility aids, I felt like I really needed the people in my life to cheer lead me on that in a way that I really needed. I kind of felt like I needed someone to say, "I'm proud of you for doing this," instead of maybe having a more neutral response. When many of us are diagnosed, it is very popular thing for doctors and professionals to say, "Don't worry, not everyone with MS ends up in a wheelchair." And I hate this sentence because I don't think it makes anything less scary. If anything, it stigmatizes mobility aids and makes it sound like that's the end, but nobody's saying- Alex Hajjar: Of your life for something. Ardra Shephard: Yeah. Alex Hajjar: Right? Ardra Sheppard: Yeah. Alex Hajjar: Nobody's seeing, "Not everyone will have trouble walking." Here's like, we hope it doesn't. Hope is cheap. Ardra Shephard: Of course, yeah. "Here's what we can do if it does," because when we don't position it like that, it can feel like you are the outlier. You failed at having MS, and that becomes this other barrier to starting to use mobility. Definitely you are in this gray area for a time when using a mobility aid is a choice. It might be a choice that makes you less safe or safer depending on which way you go, but it's not as black and white as some injuries that might necessitate. And of course in MS that can happen too. It can be very black and white, but for many, when you're transitioning from relapsing remitting to secondary progressive, it really does become something you have to choose. Alex Hajjar: Yeah, I think, I don't know. It's talking about the fear and the stigma, and I think that's a very real thing. And yeah, it's tough. I mean, I think it's fair. If someone were to ask me, what would you say to friends and partners who maybe hesitate to see their loved ones using a mobility aid? Because I think you can see it sometimes in people's faces where they're like, they see you and they cringe, or they have this look of pity on their face and you know what, get over it because this is the new person and this is how they're getting around. And there's mobility aids from canes and AFOs and wheelchairs. They're like superpowers when you get out there and they give you that independence and they give partners that independence too. For me, I feel like that is the case. Ardra Shephard: Well, I think that there is a learning curve, so if you are lucky to have friends and family and even doctors who are supportive of you using a mobility aid, that's awesome. But not everyone does. And sometimes people are even applauded for not giving up and not using a literal crutch and that can be really, really damaging. And so again, I worried a lot about what my partner, how they would feel being seen. It sounds so silly now, Alex, you've been through it as the partner, and so what I'm hearing you say is also what has been my experience is that it is a positive thing for both people or for the whole family, whoever's involved because you do get to spend more time with your person out doing stuff instead of just chilling at home. Alex Hajjar: And I've seen people literally dragging their people around, and I think that's way worse to watch two people struggle when neither have to be struggling when it's something as simple as a cane could be used to just move about. I think that's the most encouraging thing to see in my opinion. And when, yeah, I think because it's a dependent relationship, obviously, but at the same time you don't have to be as dependent with these items. So it's great. Ardra Shephard: So it seems so obvious. It's so weird what we've done to stigmatize these devices. Alex Hajjar: Yeah, yeah. I mean, I don't know. They're pretty simple. They're in fundamentally simple items, but they're so critical to people's just going to the store. It makes it a lot easier. You might not even need your partner most of the time if you're just using one of these one a mobility aid, whether it's a cane and a brace. That's what Nicole used when we were in Vietnam. It was a cane and a brace, and I think you've said it before, obviously is different aids for different days. Ardra Shephard: Yeah, I want to get into that. So really I think my understanding when I was first diagnosed was, hopefully won't need a wheelchair. I always thought that if you needed a wheelchair, that meant you were a full-time wheelchair user, and that's not the case at all. And I find, I'm garbling my words, listen, because I'm so passionate about this. Once I understood that I could use different mobility aids throughout the day or throughout my life, that made a big difference for me knowing that it's not black and white, it's not night and day, but I will say it can be very difficult to determine exactly when it is time to start using mobility aids. In my experience, in the experience of people I've talked to, it's not always a doctor that's going to suggest this for you. And also, we don't tend to see our neurologists all that often when things are changing and fatigue is so variable. I remember about 10 or 12 years ago, I just moved into this building and I had a neighbor down the hall. She was a new mom and she had a screaming baby. She was losing her mind. She barely knew me, but I think she was just at her wit's end and she begged me, she was like, "can you please just take this kid for a walk? I'm losing my shit." And so I was like, "Okay." She trusted me and the kid was in a stroller and I took him for a walk and I discovered this energy, this ease of movement from pushing the stroller. My walk was so long that I feel like she was close to calling 911. What have you done with my kid? I was gone for so long, right? Okay, this is not a good reason to have a baby. Alex Hajjar: Did you give the baby back and just take the stroller home with you? Ardra Sheppard: Right. I feel like I would've looked crazy pushing an empty stroller. Maybe I could have gotten away with pushing one of those fancy dogs. Oh yeah, I lived in the city. Alex Hajjar: Pomeranian, yeah. Ardra Shephard: But I didn't. And then I would notice too at the grocery store pushing the cart how much easier, like how much longer I could go. Alex Hajjar: Okay. Yeah. Ardra Shephard: So those were flags for me to notice that, wow, these are things that increase my stamina. I mean, I didn't process that into like, oh wow, I should get a rollator. I still waited five or six years of sitting on a curb because I ran out of steam and went past the point of no return and couldn't make it home. Alex Hajjar: And I think that's part of the confusion that comes with when to get one. And I've always heard, if you think you need one, if you're at the point that you think you need one, you're actually way past the point and you probably need more than one, one type of one or something like that. And it doesn't mean you need it all the time, but you need it if you're going to get the mail, but not if you're getting up to bed to make coffee or something like that. So there's different areas to look at. And to that point where you're saying you could walk a lot more, and from my perspective, I think, or for me I should say, I guess when Nicole started using a mobility aid, and I've said I typically would, what is it? I orbit around Nicole, I would orbit around Nicole, but when she's using the mobility aid, my orbit is I can kind of go a little bit further and that's just my own personal paranoia. But I think those, whatever aid she's using, she knows exactly what she needs for that time and that purpose. And then I can step back and she has ... this sounds terrible because I feel like I'm always hovering I'm saying, but I'm not. She goes out all the time, does her own thing, and I have the peace of mind that she's going to be stable and not fall down and get hurt or something like that. And I think that's something constantly that I have a challenge with. But these mobility aids definitely allow me to maybe just lower my shoulders and breathe. Ardra Shephard: Yeah, yeah. Take it easy, Alex, come on. She's a big girl. I do. I will say though- Alex Hajjar: I know. Ardra Shephard: You know, you think MS sucks, but then you fall and break something and it sucks a hell of a lot worse. So it is important to be safe. That said, listen, there's no guidebook on how to hack any of this stuff. I struggled. And so I'm excited to do this episode because I do want to talk about what our options are. And like you mentioned, I think are the most obvious first sort of thing that we might, first device that we might consider. But I would also urge you to consider something like trekking poles, which look a little bit sportier if that's your jam, but also provide bilateral support. So canes actually can be a bit of a challenge depending on where your weakness is or where your drop foot is. Forearm crutches that you can also use on both arms bilaterally are also a good option. I want to give a shout-out to the 3rd Foot Cane, which is by a Aligned by Design because you can get at the pharmacy or whatever, a clawfoot attachment to your cane that can feel more stable. But the 3rd Foot Cane is it's got a rubber foot. It doesn't have any toes, but it moves like a foot so that when you walk it helps you move in a more natural gate that I use at home. Again, you can have two and use them bilaterally. I like to have my hands free to carry a glass of wine or coffee or whatever at the same point. Alex Hajjar: So Nicole uses a collapsible cane, which is great because in the summertime when we're using the motorcycle, we can collapse it and throw it under the seat and go then. So there's no worry of ever not being able to store it. And the hiking pole. So the hiking pole, I just wanted to bump in about that because that was the first thing that I did get Nicole. The thing was, or that's the first thing I came home with. And it's good. It has, I think a bit of give as well, some of them are spring loaded if that helps, but they do tend to be quite narrow at the bottom, and some of them actually have a little metal piece in the middle of the foot, let's call it at the bottom. So maybe it's for a special rock climbing abilities, but at the same time, I don't know if that might be something. So I would just say test it out. Ardra Shephard: I think you really do test it out. Absolutely. They're not that expensive. But also that's true. I think that trekking poles are more helpful for balance and stamina, not so much for drop foot. So it depends. And you can have more than one thing going on at the time. In fact, you can use more than one mobility aid at the time at, and I think AFOs, which you mentioned are really important to know about. So that's an ankle foot orthosis. And there are many, many variations of these. My first AFO was customized, it had a fler de lis on it. It was sort of my first entry point into mobility aids. I was doing an opera training program in Edmonton and I was about to meet 40 new people that I'd never met before. And this was when I was in the invisible illness stage of MS and it's hard to meet 40 new people and feel like you have to communicate some fatigue needs and all of it. And so the AFO was kind of a light bulb for me in that situation because yes, mobility aids can make us feel like all eyes are on us and stigmatized and whatever else. In this case, I felt like it communicated something that for me, that I didn't have to spell out over and over again. It was like to these 40 new people, it was like, I might need a little extra whatever, if that makes sense. Alex Hajjar: Was it a rigid item or was it like, because there's the DICTUS band, which I'm sure we're going to get to- Ardra Shephard: Yeah. Alex Hajjar: But that's more elastic I guess maybe is not the best word, but it's more flexible. Where Or did you have one of the rigid ones? Because, you know. Ardra Shephard: Yeah, so, an AFO, an ankle foot orthosis, AFO can help you if you have drop foot. So drop foot is when you're walking and your foot, you're having trouble picking it up off the ground. This is a device that can basically keep your foot ankle up. I suck at these medical descriptions. This is why they don't let lay people give medical advice. You need to see, you need a doctor, you need a prescription. These are custom medical devices. There will be some insurance coverage for them if you have private insurance. But there are also non-prescription hacks. Alex mentioned the Dictus band. I really love this. You can get it on Amazon. You don't need a prescription. It's cheap. It is a piece of leather that wraps around your ankle and then attaches to the eyelets of your shoe to pull your foot up. And that was a hallelujah moment when I found that because it made such a difference and such a quick, easy fix. I can wear it with my rollator. There's even a shoeless attachment that you can wear at home. When I discovered that, I was like, why didn't someone tell me about this five years ago? Alex Hajjar: It's not out there that much. It's very difficult. Ardra Shephard: Yeah. Alex Hajjar: It's a huge learning curve. Ardra Sheppard: Yeah. Alex Hajjar: We keep saying it, but it's true. It's huge. Ardra Shephard: Yeah. Alex Hajjar: They're just, it's coming up now more I guess. But even when we started looking at it, there's not much there to look at. Ardra Shephard: Well, and I think once you do decide that you are ready for a walker, which we now call rollator, that's an overwhelming world also. And where do you start? You can go to a medical supply store. I went to one and did not have a good experience. First of all, the store that I went to, they told me that they weren't allowed to give me any advice, which was very frustrating. You get it that you're not a doctor, but I need you to at least tell me how some of this stuff works. Alex Hajjar: They supposed to sell this stuff to you. Ardra Shephard: So a walker, a rollator is something that can help you with balance, gate fatigue, endurance, all of that. It can give you a place to sit whenever you need it and it can help you carry your stuff. They've come a long, long way. My tips, right back to canes, I think you can personalize and I think you should pick something that matches your style. I think there are so many canes now. It truly is like eyeglasses, there's no reason not to find something that matches your style. Rollators are going that route as well. And I think the things to look for in terms of style and function, you want something that's lightweight. You can get carbon fiber, which is the lightest, but there are lighter models. Also, there are a number of colors you can choose from. For me, hidden cables is what makes something look great. Also, lightweight, you want to make sure it fits in your car and even that you can lift it because that's a part of endurance too, or independence. Just being able to cart your own device around on your own. Alex Hajjar: Yeah, yeah, absolutely. And to be honest, it's kind of apt maybe that we're having this conversation today because I saw somebody, I think yesterday or the day before in another building in the complex that I live, and she was walking with a walker. I know it's a called a rollator now, but this is the traditional, old school, no wheels, walker outside. Ardra Shephard: That is a walker. Alex Hajjar: Okay. Ardra Shephard: It doesn't have wheels. It's like you take a stop and yeah, I don't know why they make those. Alex Hajjar: Honestly, it was, I felt so terrible and there's maybe that's part of the stigma, but I was like, I know there's better stuff out there for you. I didn't stop and talk to her. I was just like, I hope you don't have to deal with that thing for very long because it is terrible. Ardra Shephard: Well, I think this is what's frustrating is that your neurologist is not going to be an expert on what's out there. They will send you to an occupational therapist, an OT or a physical therapist, a PT who will be able to guide you on what you need and help you with the financing process. If you live in Canada, there is funding for these devices, but even the OTs and the PTs, they don't know everything that's out there. And so they may just have one model that they recommend to most people. And it is the part where you really do have to advocate for yourself and do some homework and find the product that is the best for you. When I went to that first medical supply store, I discovered that there is a product, a rollator that converts to a transport chair. And I say transport chair, not wheelchair. Because a wheelchair you can self-propel yourself, like a transport chair you need a buddy, you need somebody who's going to be able to push the device for you. But it blew my mind that this kind of product existed because how brilliant and how it just so well articulates that there is a variability throughout the day of our energy and fatigue levels. So you may be able to walk for so long and then you benefit from getting a push. And this actually, having a device like this keeps you active longer because otherwise you might just opt to use a transport chair or a wheelchair for your entire outing and not walk at all. Alex Hajjar: And it is just super convenient. Ardra Shephard: It's super convenient. Alex Hajjar: We went to a wedding once and it was in a relative's backyard and their backyard was on a grade and it was grass everywhere. But this device that we use, we use a Rollz, hashtag not sponsored, but we use a Rollz motion and the chair just exists. There's no need to look for a chair. You just literally make three movements and you boom, you've got a seat for yourself now. Ardra Shephard: And it does sound super easy and it is easy. But the first time I went to that medical supply store, I was presented with a clunky, bulky rollator that converted to a transport chair. It was ugly, I hated it. But I thought, okay, this is what I have to get. And it was compared to the Rollz, but the person in the store didn't know how to convert the device. And so when I was testing it, I put all of my weight on it, but the handlebars were in the inappropriate place and it tipped over and I was like, this is a stupid device. I can't possibly use this. So I bought the clunky cheaper uglier version, and it was a hard day. Got out to the car, it wouldn't fit in the trunk. Alex Hajjar: Oh, the worst. That's the worst. Ardra Shephard: The best. It changed my life because at the moment I was crying and upset and just like, I'm just never going anywhere. I'm just going to stay home because the world doesn't want me out there, obviously. I was feeling so affronted. I returned it and went home and then went online and took another look at the Rollz and saw online how to properly convert it. Went back to the store, figured it out and bought it. So just, that's all. Just to reiterate how much we are left to fend for ourselves sometimes. And it really sucks, but I just feel like I want to tell people that things are getting better and there are some answers. Alex Hajjar: They are. They are getting better because I think it's just easier to find this stuff. And now algorithms are shooting very comprehensive ads at you about this stuff. If you even say transport chair or rollator, then I'm sure going to, once we finish here, probably have a bunch of ads for rollators on my phone, but. Ardra Shephard: Maybe, but it's shocking. I have- Alex Hajjar: It's still not easy, but, sorry. Ardra Shephard: It's shocking to me how many doctor's appointments for whatever doesn't have to be. I was at the ear, nose and throat guy last week and there were three or four people with rollators in the waiting room and they were all like, "Oh my God, I love your rollator." They'd never seen anything like it before. So still there is an awareness hole. And I think this is actually a really good time to introduce Suzanne [inaudible 00:28:52] to the show. Suzanne and her husband Brian are a dream team who help a lot of trippers figure out which mobility aid might be right for them. Suzanne, welcome to the show. Can you tell us about your shop Prairie Velo and how did you and your husband get into this line of work? Suzanne: Well, we, it's a long story, but the short of it is that my husband, avid cyclist his whole life, he was a competitor. He used to race in Europe, so he's been around bikes forever. Didn't choose to work in that industry, but it was always a dream of his to have his bike shop. But what's interesting is that throughout all, any trip that we would take had to have a cycling component to it. He had to be able to go out and ride. And myself too, I couldn't keep up to him, right? So this was the beginning of couples want to go out and ride and have fun together, but there's always one person, for whatever reason that can't keep up. Either they don't have the physical fitness for it or have a bum knee and have a sore back and their hands get numb. And you how the progression for us of thinking about how many people would like to ride but don't because of all sorts of reasons. Women were telling us particularly that when they would go into a bike shop, they felt it was demoralizing for them. They would walk into a bike shop and the young guys would look them up and down and go, "You want to ride a bike? We'll see if we can find something for you." And so we started talking about eAssist. We know that e-bikes are the big, all the rage right now. And for a reason a lot of people stopped riding because they just can't, it's too much for them. Riding a bike is not all that easy. So- Ardra Shephard: Sorry, in Toronto, we don't ride bikes be if, because we don't want to get killed by the cars. Alex Hajjar: Run over, yeah. Suzanne: [inaudible 00:30:59] a little bit. But yeah, you have be careful with an e-bike. They go fast. They can go really fast. Alex Hajjar: Yeah, they're quick. Suzanne: But the idea again that people were telling us, parents were saying, "I just want to be able to go out with my kids. I want to go out with my grandkids. I want to be able to keep up with my spouse and my friends. I want to keep up with the group. I don't want to be the Debbie Downer who's always sitting it out." And so then the eAssist kind of brought us to tricycles, either just regular tricycles or eAssist tricycles. And there was a stigma, a tricycles for a kid, it's for a toddler, but boy has that engineering come a long way. So suddenly people were saying, "Oh, because I can't ride a bike because I don't have the balance, I don't have the stability. I had a brain injury. I used to be super active, but I can't do that anymore. But a tricycle, oh, I hadn't thought of that." And so they would come into our shop and they would see tricycles and the wheels started to turn. A lot of people who were looking at the tricycles also had other issues maybe where they were using a cane, using a walker, rollator and just weren't aware of the possibilities, the things that could help them move. And so the rollators became a big part of our bike shop. It's you think what's a bike shop doing with rollators? But rollators have bike cables for the brakes, the wheels and the axles. And to bring our cycling expertise to these mobility aids was just like a no-brainer. People are so happy when we help them fix things that are really actually really simple. They think they have to buy a new rollator and we go, "No, we'll just look at that. Tighten up the cables, or we'll just change your cables and voila, you'll have a new rollator." But I've been listening to you and I've been seeing to what extent people just don't know what is out there. And I think that's what we bring to the table. Ardra Shephard: You've got, yes, this adoptive sporting goods store that also sells mobility aids. How do you curate what goes into your shop? Suzanne: That has been evolving. From day one that has evolved, I mean, we sell what we call now acoustic bikes, non-electric bikes, the electric bikes, for example, what we used to call the girl bikes where the bar is lower so you can get in easier. That's really important, not just for women now, we call them step throughs and men like that too. As they get older, the hips trying to get the hip over the seat, we're getting more comfortable seats. People don't realize that change the seat, your bum is going to feel a lot better. You might not feel as much pain or as much tension here and there. And I think just the openness you were talking about Ardra, how you go into a shop and they don't know how to even set it up to help you out at the beginning. My husband, Brian, I mean he's the expert in making sure that the fit is right on a bicycle. And it's all the same thing when you're on a rollator. It's got to feel right, it's got to fit your body. And the other thing too is people walk into a bike shop and it's just so cool. And we have a cool kind of store, and people just feel normal walking into a bike shop and being there along the kid who's buying his little, his first two-wheel, his first two-wheeler, and seeing people who are maybe older. The demographics are a little older, people looking at e-bikes, and then there's the tricycles and then there's the cargo bikes. It just feels nice to be in a store that it's just about people moving. It's just about people. I don't know if it's cliche, but this idea that having the wind in your hair, boy, that feels good. And it brings you back to your childhood, that independence the first time you could go on your bicycle and go to grandma's or go around the, so that experience is just, and they tell us how much they appreciate that. Ardra Shephard: Well, and I look at your site online, Suzanne, and it does look like everything in your shop is cool. Is there an intent to that? How do you choose what goes in your shop? Suzanne: It's got to be cool, but it's got to work. It's form and function. If it doesn't do the job, it's not enough that it looked pretty. And I think, again, without naming brands, we have brands that are sexy. I often tell, we do a lot of online, I spend a lot of time on the phone talking about our products and it's got to look sexy. You were talking about this transition. When you come to the point where you have to accept that even the cane isn't doing the job anymore, you need a rollator. It's a hard decision to make. I spend a lot of time on the phone with people who it's like, "Here I am. I need a rollator, but man, if I'm going to have a rollator, it'd better look good. I don't want to look like," everyone has this image of their grandmother and their great-grandmother hunched over their rollator. But when you can explain to them- Ardra Shephard: I hear this all the time, and I feel like the grannies need better shit too. You know what I mean? Suzanne: Exactly. Ardra Shephard: My grandmother liked to look cool. And yeah [inaudible 00:36:49] Suzanne: [inaudible 00:36:49] those older generations of rollators, you were talking about walkers where you have to lift. So those are the images that people have. And when you talk about something that first of all is the aesthetics, the lines are really nice, the new verity colors. It's like choosing a pair of shoes. You're not going to wear just any color of shoes. Ardra Shephard: Oh, you don't have to tell me, I got phone and the wrong case came and I don't want to be seen with this. I had to wait two days now to get the right case. And in the meantime, I don't want to be seen with this electric blue. One thing I hear a lot is that some of the newer, cooler, sexier devices are more expensive, and it's true. But I want to bring some attention to, there is funding for all of these devices across Canada and some of the devices that weren't maybe recognized a few years ago are now being recognized. And is that true, Suzanne? Are you seeing more of that? Suzanne: Yes. Ardra Shephard: Yeah. So I, and you want to check with your private insurance to see the top up, but don't assume that you're not going to get pretty good coverage. Suzanne: I've had people where I've said long discussion about what's the best rollator for me. Is it the seat 20 inches from the ground? Is it 24 inches from the ground? How wide? My hips are a little wide. It might be a little snug. Those are difficult conversations when you have to say, how tall are you? Now your bum, do you have a big bum or a small bum? And so we laugh a lot about those things, but it's true. They have to fit in these walkers. And then some of the people, by the end of the conversation, I say, "and do you have insurance, do you think insurance could cover that for you?" And they go, "Oh, I hadn't thought of that." They hadn't thought that there would be insurance that could help with the purchase of a mobility aid like that. So that's all I always hear in their voice like, "Oh, hadn't thought of that. This is great." Ardra Shephard: Yeah, the money thing. I always say, this is part of the household transportation budget. We're a one car household and I don't drive. And so what these things are not luxury items. They are not nice to have. So you need to have them. Alex Hajjar: I have two questions. One of them is, what are maybe some elementary things that either a person looking for mobility aid should functionally be looking for, or a person or their partner. If they're going in and they're looking for a mobility aid, what kind of questions do they want to ask? And the other question I have is, how did you get the nickname Rollator Queen? Suzanne: Well, that's my husband. He's everything. He's kind of like that. But you know what, he threw that out because the minute we get a call at the shop for that, he immediately sends them to me because he knows the product well, I think he's probably better at fitting people, but most of our customers are all over the country. I mean, they're all over the country. We don't even have all that many people in Manitoba actually that come to see us. So you really have to spend a lot of time on the phone explaining things. And it's not a five-minute conversation. They start telling you about their story, about their life, about where they're at, and you have to be the queen. It's not a good term to call me, but the queen kind of sounds like hoity toity, but it's not, I spent a lot of time and I love that. That's what I like the most. Ardra Shephard: I love that you are so passionate about this, Suzanne, because this can be a really tough time for people, and it's nice to have a friendly, knowledgeable voice that can help guide us through this. Suzanne: Well, the beginning of a conversation starts here, and as it goes, as it progresses, I can hear the anxiety level just and the stress level just kind of going away. And by the end, sometimes they're confused because they have too many options. And I have to remind people, I had a long conversation with someone yesterday who is traveling, but she's not just traveling in her life. She also has the day to day. And so she says, "Well, what do you think I need?" And we had to think really about, "Okay, what's the most ... setting the traveling aside, think of your needs today. Don't worry about what's coming up. You have an issue now and you want to get the best product for yourself now." And sometimes it means having more than one, right, rollator, you're going to Europe, you're going to be in a plane, you're going to be on cobblestone, and you're going to have a lot of vibration. Is there maybe a rollator that has pneumatic tires that might help with that? And that will also be good when you come back home and you want to go, I don't know, on a bike path or on a beach or something like that. So you really have to show them the options. And you were saying, Ardra, how that is not obvious. You have to start doing your own research to find out what's out there. You're not going to see that in the medical stores. You need help knowing what's out there. And you were speaking about a rollator transport chair. I mean, how cool is that? Ardra Shephard: It's so cool. Suzanne: To think that you can do that. Ardra Shephard: And so Suzanne, like, yes, there's some cool stuff out there, but is there any cool stuff coming? What do we have to look forward to in this space? Suzanne: Well, that's really exciting about the cycling industry, just as in the mobility industry, is that the eAssist, the electric assist, meaning for example, that you have one of these rollator transport chairs. Having an electric assist that allows the people who are pushing you to have a little bit, that makes it a little easier for them to get over the little bumps in the hills. So imagine an eAssist for the person pushing and a joystick that you can add to so that you can control your chair. Ardra Shephard: That is the dream, to have something where I can use it as a rollator, get a push when I need to, and then motorize hand control when I need to. Especially, I really need museum autonomy. When we go to a museum, it's slow walking. It's exhausting, especially when we travel. We love to do it, but my husband, he needs to spend so much time at every painting, and I just need the autonomy. I need to do it on my own. So that is super exciting. I can't wait for that to come. I've heard this rumor, I think later this year, right? Suzanne: It's a rumor, I have to say it's a rumor, but the other one that is available, and still we have to have it approved for Canada, is a walker for people with neurological diseases that helps them walk by giving them visual cues. And- Ardra Shephard: This Is the Parkinson's rollator, right? Suzanne: This is the Parkinson's. Ardra Shephard: It's so cool. Suzanne: And what gives you visual cues and tactile cues. So for example, you'll have kind of a metronome vibration in your hands to give you, to help you with your gait, to keep the rhythm and to keep you moving forward. And visual cues where you would have a line that appears one of those, whatever lights that appears on so that you can keep your lines straight. Really cool stuff. Yeah, because it's go science. Exactly. It's the idea too of the whole eAssist, the batteries, the electric batteries that allow us to do those things now. Yeah, I think the Parkinson's device is going to be excellent. I know I've had OTs and physiotherapists who are like, "Boy, I can think of a lot of people who'd really benefit from that." So it's going in the right direction. A lot of these products are European products. Even with my husband, we're always saying how even for the trikes and the recumbent, and Europe always seems to be like 10 miles ahead of us in terms of that. But we're bringing them in because people, they want the best that they can get. And like you said, if it's money that you can spend on that instead of a car and car insurance and all of that, you've got to take care of yourself and your needs. Ardra Shephard: I mean, I like, also, Suzanne, we've talked about the need to have mobility aids. I am definitely more of an indoor girl, but I'm starting to get a bit adaptive sports. Curious, you mentioned the bikes. Are there any other adaptive sporting equipment that you can tell me about to help maybe tempt me into this space? Suzanne: Well, this would not be for someone with MS, but we're developing our own line of hand bikes. So hand bikes can also be for all sorts of disabilities, mostly paraplegics who don't have use of their legs. And we're really, really, really excited about that because it's kind of like an untapped market thinking of using the parts of the body that do work well. Ardra Shephard: Yeah, no, that's so cool. And I love that. I think I'm guessing that why your hesitation to recommend that for MS is the fatigue ability, right? Suzanne: Well, this is hard. Ardra Shephard: Yeah. Suzanne: This motion is hard. You have to have core, good core. You have to have a good upper body. But again, you can learn and get in shape. Ardra Shephard: I was born without abs. It's ... Suzanne: Well, again, I think coming back to the tricycles and the recumbent, and there's walking bikes too. A lot of people want to be able to move their lateral, do some lateral movement. So they have the walking bikes where they're walking, but they're sitting on something that looks like a bike without pedals. So there's also some things like that. So just keeps you working. Just like we have a neurologist actually, who's retired and with Parkinson, and he's worked in that environment forever. And here he is with Parkinson. He's been on using a scooter, just one of those scooters that you do. And he says that if you use both sides, you're really working both sides of your body. And that's really important for people with Parkinson, is that they keep both sides of the body working and the brain working as well, Right? The right, left, right, left. And so there's sorts of reasons to use these tools or these mobility aids, or not aids, I mean scooters. Anyone can use a scooter. But the idea that you can keep your body in shape and keep it in shape as long as you can. What does work well, what you're comfortable with while you're working on that, you keep those muscles active and you keep your head active and you're outside. Being outdoors, you said at first, you thought, "I'm just going to stay in the house and never go out again." For some people, just that first time they go out with a rollator, it's like, whoa, I actually have something to do now I can actually get out. And you were talking, Alex, about if you have a carbon rollator that's very, very light, well then you don't have to throw it into the trunk of the car. You're just folding it, putting it in behind the driver's seat, and you're going out and you're doing your shopping and your groceries and you don't need anyone's help. You don't have to ask your nephew to come and help you, and you don't have to ask the kids to help. Alex Hajjar: And you're being seen as well, right? You're out there being seen. I think the problem too, and the thing that I noticed in other places is that if you don't have access to these aids and these tools to give them autonomy, then they don't get seen. And then that's a problem. Because then if they don't get seen, then they don't get help. It's a weird cycle. Ardra Shephard: And this idea of like, "Oh, nobody wants access to this. You don't see the people coming." Alex Hajjar: Yes, right. Ardra Shephard: You don't even know that there is this need there. It is exciting to know that there are new and improved devices on the market. That style is being prioritized as well as function, and that we have more and more options when it comes to mobility aids. Suzanne: Yeah. Ardra Shephard: Thank you, Suzanne, for your passion in serving this community. You can find Suzanne and her awesome mobility aids and adaptive sporting equipment PrairieVelo.ca. That's PrairieVelo.ca. I had a lot of support when I was first diagnosed, but the transition to mobility aids can feel like a whole new diagnosis. When you lived with MS for 10, 15, 20 years, your friends and family might assume you have your disability shit together. So if you're struggling, don't be afraid to tell your people that you need a little extra TLC. Disability progression is a milestone that you might need to grieve, so give yourself permission to process what you're going through and know that you will adapt. Then hopefully, eventually even embrace mobility aids is the tools they are, and start living that hashtag babes with mobility aids life. Alex Hajjar: Mobility aids have definitely made our lives easier. Ardra Shephard: Yeah. Thanks for tuning in. Keep moving trippers. Thanks for listening to Tripping on Air. Don't forget to visit us TrippingOnAir.com.