Using a wheelchair

MS Plus acknowledges the traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respect to their elders, past, present, and emerging.

Kim: Welcome to the Learn from Me podcast series. Accepting a wheelchair can be very confronting for people with MS, but at the same time, it can be vital in promoting independence and quality of life. Today I've got the pleasure of interviewing Mark, who's going to share his valuable experience in accepting a wheelchair into his life.

Welcome, Mark.

Mark: Hi Kim. How are you?

Kim: Great, thank you. We might kick off, if it's okay, if you could describe for us the time when you decided to start using a wheelchair.

Mark: I started using mine in 2017. I had had MS for about four years at that point and my legs had started to get a lot worse by then. I had a lot of spasticity, a lot of fatigue, a lot of foot drop and I was also dealing with incontinence and that classic MS Neurogenic bladder. So, one problem was causing another problem, was causing another problem, and so my legs not being able to work well was causing me to fall over. It was also causing me to have trouble getting to bathrooms in time.

So, in 2017 I started using it in about August or September. I woke up one morning and my legs just weren't working, and at that point I'd already started using a cane and a walker with wheels on it, a rollator, I think they call them, as well. I'd used those for a few months, and they'd helped a little bit, but once my legs stopped working altogether, I said, “what am I going to do?”

So, I rented a wheelchair on, I think it was a Friday, that my legs stopped working and, it was only temporary. They came back on Saturday or Sunday, they decided to come back but, by Saturday night or Saturday afternoon, I had a wheelchair that I used for probably six or seven or eight months until I got my permanent chair through the NDIS.

Kim: A lot of people talk about it being a really challenging decision to get a wheelchair. What was it like for you, Mark?

Mark: It was difficult for me because, you grow up with a lot of preconceived notions about what disability means and, how does someone live with disability? We all have this really fatalistic view, I think, that is almost drilled into us from popular culture, that living in a wheelchair is almost impossible and, it's sort of the end of your life as you might know it.

So, I was guilty of that. I thought, once I go into my wheelchair, I'm not going to be the same person, my legs are going to disappear on me. The more I use my chair, the worse my MS will get, that people will look at me differently, will talk to me differently, will treat me differently and, maybe some of those things were true, but it was definitely more in my head I think, than in reality what it really was.

Kim: There's some key points you mentioned there, and I think some people describe it that it takes time to, perhaps grieve some of those changes and, adapt to them.

Mark: Yes, that's definitely true with MS. Just generally, the goal posts change constantly. You're sort of clinging on to things, you're hoping that things don't get worse and, I can remember very vividly having ideas in my head of almost bargaining with myself. Like, “okay, I can live with losing part of my ability in my legs, but I can't live without my other leg not working, or my hands not working”, but eventually you find that there are solutions, you can find solutions to things, but you do definitely have to grieve. You have to give yourself time to be upset, and it's natural and, it's cathartic in a way to just look back and think, wow, I've really gone through a lot. It's been challenging, but I've made it through the other side, and I've found solutions and now I'm able to do more than I could previously.

Before I had my wheelchair my life had really gotten very limited. I wasn't engaging socially and I turned down a lot of invitations because I didn't think, or not that I didn't think, but the reality was I wasn't going to be able to get to the event and have enough energy to enjoy myself and then get back home and be safe while doing it. without falling over, without having an accident trying to go to the bathroom.

So, there's a lot that goes into it. It's emotional, it's physical, it's mental, and it takes time. It's not overnight that you feel comfortable using your wheelchair, but eventually you get there.

Kim: For the people listening that might be thinking about using a wheelchair, what are some of the things that have helped you in accepting it into your life?

Mark: I think, looking at the positives has helped. Just seeing that, okay, I was working full-time when I started using my wheelchair. If I stopped, if I had just decided, I'm not going to use a wheelchair, I'm just going to, I'm not really sure how, and I'm thinking about it, how would I have continued working if I didn't have my wheelchair?

There's actually no way I would've, because working from home wasn't widely accepted back in 2017. This was pre Covid, so that was definitely a positive. From the wheelchair could I go to a concert or to a football match? Before my wheelchair I could, but I was not safe and everyone around me was super stressed that I was going to fall over at any moment. Once I got the wheelchair I was suddenly able to go and have fun and not have to think about, oh, “how am I going to get to my seat if there are stairs? Can I get up and down the stairs? If I have a beer, will I be able to get to the bathroom, or will I fall over? Will I trip? Will I hit my head?”

So, there are positives that go along with it. And then it's just time. With anything with MS you're not going to wake up one day and be, okay, I'm fine with all this.

It's bad.

A lot of the stuff we deal with is really, really hard. It's not normal. It's not an everyday experience to wake up and your limbs don't respond to you anymore. It's not light, it's not easy, but you get there, you get there. I think we all have that in us somewhere. We just have to dig deep and, find it. Talking to people who have similar issues helped, seeing those examples on social media or, in seeing athletes, for instance, who use wheelchairs every day and are able to achieve just amazing things. You find those examples and those help you see the world a little bit differently.

Kim: Positive role models like yourself, Mark. I think talking to other people that have lived experience is so powerful and, I think some of the key things you've mentioned there around it opening your world that, prior to the wheelchair it sounds like you could have become quite isolated but, in accepting the wheelchair you are now able to go and see the sporting team you like, go for drinks after work, do the things you enjoy and then have the energy when you're there to enjoy it as well.

Mark: A hundred percent. Before the wheelchair I would turn down invites at every turn, basically. I was just not comfortable leaving the house, so the wheelchair made it so that I was able to get back out into the world and live my life. I mean, it's a different life than what I used to enjoy, but I still do everything I can, not everything I want. There's certainly things that I want to do that I can't do, but, there's alternatives, there's always alternatives. I used to play soccer, football, before MS became an issue for me but, surprisingly within a year of being diagnosed with MS, I could no longer really play sports because my mobility, while I could run really fast in a straight line, I couldn't stop, and I couldn't change directions. So, suddenly soccer was off the table, but this year, fingers crossed, I'm hoping to start playing power wheelchair soccer, and I started looking into it, actually this week, more seriously, so, we'll see how it goes.

Kim: I think there's a myth out there around, as you said earlier, living well with a wheelchair that you can do pretty much everything else, but you might need to do it differently. Like the sport might be a different way of doing it. It sounds like, as you said before, it's finding the solutions, finding the positives, the how to do it.

Mark: Yes, that's definitely it, and you find new things that you might not have been interested in previously. I've recently started playing chess. I never played chess before, but it's a very accessible sport, or game, I guess. You don't need your legs to play chess. And even though I have a lot of disability in my upper limbs as well, I can play chess with my limited hand ability.

So, you find things. I've seen people on Instagram who are quadriplegics who paint using their mouths. They put the paintbrush in their mouth and are able to produce incredible paintings. There's a guy out in WA who does incredible drone photography of the marine life out in the oceans on the west coast there, and he's also a quadriplegic. He uses a drone, like I said, and he gets these incredible shots of whales and dolphins and all sorts of amazing things off the coast, and recently he was surfing. He figured there's a way to surf without the use of your legs and limited use of your upper body. There are ways to do it. It's this figuring it out how to do it is the question.

Kim: And I think it's also having a positive attitude like yourself. You know, straight away you're looking at, well, how could I do it? What are ways of modifying things to get there?

On that note Mark, what services and supports have helped you in transitioning to using a wheelchair?

Mark: So there've been quite a few. I will shout out MS Plus. I took advantage of the one-on-one peer support, and one of the previous guests on this podcast, Matt, was my mentor who also uses a wheelchair. I think talking to people, one-on-one who have MS and use a wheelchair, I was like, okay, there is a way, there's a way to do this. It's not the end of the world. That was the first one, really leaning into MS Plus, they then directed me towards the NDIS and helped me on the journey of getting my first NDIS plan. And they also were my plan support coordinators or plan managers for my first plan. For my first plan I used the support coordination from MS.

And that eventually got me to my first wheelchair. So, my first wheelchair I needed an occupational therapist to script the chair, to tell me about wheelchairs, because that's the other thing with wheelchairs, we don't know anything about wheelchairs. I didn't know a manual chair, a fixed frame manual chair, a rigid chair as they're called, from a foldable chair from a power assist chair to a full power chair. You know, it is not something we grow up thinking about really, I mean, when I was a kid, I looked at cars. Cars were the thing I knew a lot about, but wheelchairs were never really on my radar. So you need to tap on the shoulder of experts so you know what you're looking at.

Now I can have really long conversations about all the different types of wheelchairs that are available and, what is good for me, what might be better for someone else? But, to be honest, the occupational therapist is so crucial in finding someone who's actually good at their job, and you can rely on, is so hard. That's been one of my biggest challenges with the wheelchair experience probably. But yes, those are the three main ones.

And then further on, once I got the wheelchair, trying to figure out, okay, what can I do in this chair to stay fit and to continue on my rehab journey that I've been on pretty much, I'd say since 2016. That's when I really started trying to exercise with MS in mind, so I started going to a gym here in New South Wales called Neuro Moves. They're part of Spinal Cord Injury Australia, and they do some amazing work. They have access to some really cool technology that'll get you back on your feet because there's also that image, I think, of people in wheelchairs not being able to walk or stand, but that isn't true. You might still be able to take a few steps or to stand or whatever it might be. Everyone has different abilities.

Kim: Absolutely. I think that's a really good point that you make, that there are so many different types and, linking into the right professional, and getting the support to work out which type of wheelchair you might use. And you were mentioning to me earlier that you've used different types and they have different benefits. I think you've got a different type now that you find helpful.

Mark: Yes. The first chair I got in 2017 was basically a picnic chair with wheels on it. It had no support, no back support, everything was really difficult to manoeuvre. You really had to push down on the brakes to lock them into place, the wheels were super narrow, and it was bulky, it was heavy, so that lasted me for a while because I could just pick it up off the shelf. I rented it for a few months and then I bought it from the pharmacy or the equipment rental place.

So, I moved on from that to a foldable chair still, but you could actually modify it, because that's the thing you have to consider when you have MS, is that your body's going to change. You might need one thing today, but in a few months or in a few years your seated posture might change. The abilities of your arms might change, so you might have to sit in a different position to be able to push your chair. So, with my chair, you can change the angle of the back rest, you can change the height of the seat, how higher or lower you're sitting from the ground, you can change the size of the wheels, you can change attachments on the wheels as well, the rims of the wheels, you can have different types of grips, and then you have different add-ons.

My chair comes with what's called a power assist. The power assist is something that I clip onto the back of the tyres and it's a little motor that helps me on longer days when I'm out of the house and I’m not going to be able to push the chair all day, or if I know there's going to be slopes involved and I don't want to be pushing uphill, I can use my motor to get around.

So, it's a huge world, a very expensive world, but luckily with the NDIS you’re able to afford the products. Then there's time involved, there's a lead time for everything, getting an appointment with your occupational therapist, getting equipment to trial. Trials are so important. I think one of my regrets with my chair was I was in such a rush to get the chair that I didn't do enough testing initially, and you really need to do that. And spend one or two or three weeks at the front end figuring out the equipment you're going to need, because you're going to be stuck with this chair for five years until the NDIS approves for you for another chair. That's in their mind that five years is the life cycle of a chair unless your body changes dramatically, which it might do with MS and then you apply for a different type of chair.

Kim: It sounds like accepting a wheelchair Mark has really helped your independence. You feel a lot safer, a lot more confident, and a lot more connected.

Mark: That's true. One of the key points I think is that independence. I've retired recently, I stopped working last November, or sorry, last September. I remember when I was working I could see the train tracks from my office through the windows, but I couldn't actually take the train to and from work because I couldn't actually walk from our office to the train station, because my legs just didn't have enough juice in them at the end of the day basically. So, when I finally got my wheelchair with a motor on it, I was able to get home by myself, which was incredible. I couldn't get to work by myself, but I was able to get home and, it was a game changer.

One of the things that I've experienced with my journey with MS is I don't get a lot of time by myself. There's always someone helping me do this or that or the other, someone driving me to or from work, or accompanying me, but I would get an hour and a half or so in the train, just to myself and my headphones, no one to bother me and I really enjoyed it, to be honest. That was a bit of a game changer again, and just being out and about on my own without feeling like I needed someone to push me, or hold my bag, or whatever, it really helped.

I think there's still some situations where you'll interact with people who've never interacted with someone who uses a wheelchair, and they'll talk to you differently than they would normally. They might even ignore you and talk to the person behind you and who might be with you, thinking that you have some kind of cognitive disability. There are things that takes time to get used to, but people they feel very comfortable around touching people's wheelchairs and even touching my body.

Kim: Oh, my goodness,

Mark: I'd never experienced anything like that standing, but I remember on a couple of occasions being in an elevator and suddenly feeling a hand on my shoulder. And I was thinking, what the hell is going on here?

Kim: That's creepy, Mark.

Mark: It is very creepy. It is very creepy. And I'm just like, this would never happen if I was standing. No chance this would ever happen.

Kim: How do you manage things like that, those community attitudes? I guess people that aren't educated. How do you deal with that?

Mark: It just takes time and, honestly, standing up for yourself and talking, saying things, just, educating people, and honestly, you can't be scared of hurting people's feelings. I remember people staring, there was a lot of staring initially, and I used to notice the stares. It would make me feel uncomfortable. But very quickly I just started staring back. That was my solution. Just give them a hard stare.

Kim: Stare them out.

Mark: Yes. See who blinks first. It's a weird one. I don't know, you go through some very funny experiences. At the same time, you get the opposite. You get a lot of people over indexing on help, being helpful.

Kim: Over helpful.

Mark: Yes. Over helpful. There's definitely a balance there. I mean, it happened a lot with my family where they almost try to remove any barriers for you and be like, “no, no, let me do it; no, no, let me do it for you; let me do it for you.” A lot of that sort of thing, and you just have to tell them, “No, I'm still able to do things. If I need you, I'll shout out. Don't worry, I'll let you know.”

Kim: So it sounds like you almost need to get your own head around it to then be confident to educate people around what your needs are.

Mark: Yes, and it takes time with it. You get to learn what you need, what you can do, what you can't do. Like, I can't put my motor on for instance, there's no way I could do it without someone else's help. So, you have to be prepared to accept help, and I think that's a big part of MS actually, is knowing your limitations and respecting your boundaries so that you're able to, just live a full life. You ask for help so that you can do more. Seek help, you know, find it, find the solutions.

Kim: Absolutely. So in closing Mark, is there any top tip that you'd share with someone that's thinking about getting a wheelchair?

Mark: I think, one of them is just do your research. It's not easy to find the information that you need when it comes to picking out a wheelchair but, test it, try it out. If you're worried about going to your next event, whatever it might be, where you think you're going to struggle, try doing it with a wheelchair.

You can rent wheelchairs and see if it makes your day easier. And, if it does, then maybe it means you should try to get a chair into your life. And, you don't have to use it every day, you don't have to use it all the time. It might be just another tool in your toolkit of dealing with MS, because you need all the help you can get, I think, when it comes to MS, it's not an easy thing to solve on your own. But, do your research, test, test, test, ask your OT and whoever's providing your chair to you to trial the chair for a couple of days, and take it out, take it into the real world, to see if it helps you and where the limitations are as well.

I think in April there is, at least in New South Wales, there is a convention, or an exhibition, an expo called ATSA (Assistive Technology Suppliers Australia). It's a big expo for wheelchair, or sorry, disability equipment in general. Go to an expo and just have a look at all the options that are available to you and see what you can find.

Kim: Great. Thanks so much, Mark. So many key messages there to help people in making a decision to add the wheelchair to their toolkit. It sounds like it's so enriching, it really opens doors for you and adds quality to your life. So, thanks so much.

Mark: Thanks Kim.

Kim: If you'd like to talk to someone, about your particular situation, please reach out to MS Plus Connect on 1800 042 138. We have peer support volunteers, like Mark, that are more than happy to chat to you, and encourage you, and support you.

Don't be a stranger. Please reach out.