S8E21: Supporting someone with MS: a physiotherapist’s perspective

Susan (00:00)

Yeah, so the biggest thing I would say that I’ve learned as a supporter is how important it is to take care of myself as someone who is acting as supporting someone who is living with MS So for me, that means especially when they’re doing well or they’re stable, so that then when knock on wood they’re not, then I’m just better able to support them without having this huge negative impact on myself as well.

 

Overcoming MS (01:09)

Welcome to the latest edition of the Living World with MS podcast. Joining me on this edition is Susan Chyzo.

Susan wears a few different and often overlapping hats, physiotherapist, certified coach and mindfulness facilitator and Pilates instructor. She takes a holistic approach in all aspects of her work, whether in her virtual clinic, on the mat or when coaching clients for guided mindfulness practices. Susan is also a facilitator in training with the overcoming MS programme and brings a personal perspective as a supporter of a family member navigating the MS journey. So welcome to the podcast.

 

Susan (01:48)

Thank so much for having me.

 

Overcoming MS (01:49)

So to start off with, could you introduce yourself and share a bit about your background and the work that you do?

 

Susan (01:56)

Sure, absolutely. maybe it’s just helpful to place myself. I’m based in Toronto, Canada. And like you said in the intro, I wear a few different hats professionally. So the hat that I’ve been wearing the longest is my physiotherapy hat. It’s been coming up on 19 years later this year. And I’ve worked at least I started and worked kind of primarily in private practice settings. So here in Toronto or a little bit overseas as well, mostly here in Toronto, helping people with musculoskeletal issues. So whether that’s injury or pain or change in function in their joints or muscles, tendons, related structures. So that’s kind of how things started, but over the years things have evolved quite a bit and there’s been a lot of changes in my approach. I realized quite early on that I wanted my approach to be to helping people with their health to be quite active. The way it started, it didn’t feel like it was that way. So I wanted to be active, terms of, not only in terms of movement, but in helping people move, but also to help people become more active participants in their health and how they’re taking care of themselves. So that’s where that second hat comes in. I became a Pilates instructor because I wanted to bring it into my physio work and to make my sessions more active, involve more movements and just to get people to connect to their bodies in the moment and just step away a little bit from just receiving passive care. So around the same time when I added my Pilates hat, I started to see the impact of stress and mental health on people’s pain and just their experience of their situation but I didn’t really know how to, I wanted to address it, but it was, I didn’t know how to do it while staying within my scope as a physio. until I found mindfulness, so when I found mindfulness, I took a couple of courses for myself and then in that process really realized how impactful and valuable it was like for me and for taking care of myself holistically.

And from there, I started to bring it into my works, similarly to how I brought Pilates in. It initially kind of looked like leading someone through a body scan at the beginning of a session or teaching them a technique or two that they could use to manage stress during their day. And at the same time, I was still offering some of more traditional ways of physiotherapy care, like hands-on work and prescribing exercises. So was a bit of a balancing act there for a little while. But I started to move into more virtual care. then when I became a coach, those two pieces really brought things together and brought me to the approach that I’m at now where I’ve kind of stepped away from prescribing and telling people what to do and what they should do to supporting them and making those the changes they want to make in their life and helping them figure out the steps they want to take to get there. So it really brought that that active approach that I was aiming for after my first few years as a physio. It really brought that into the approach that I use now. So as a physio now, I wear that coaching hat and I help people make changes with regards to exercise or physical activity, like bringing that more into their lives. Also around managing stress and just taking care of themselves better. And mindfulness comes into that process to this day as well. And then Pilates is more outside of the clinical setting now. I still use it within physio a little bit, but more so I teach classes both online and in person in my community.

 

And I definitely wear my physio hat when I do that and that mindfulness hat as well. And on the mindfulness side, I facilitate group sessions, so helping people to deepen their knowledge and their connection to mindfulness so they can incorporate it into their lives. And then I do some one-on-one coaching within mindfulness as well if someone wants to bring a mindful approach to something that’s going on in their life. So yeah, it looks a lot different now, but that’s the journey that’s been going on in the last little while.

 

Overcoming MS (06:25)

So what drew you to the Overcoming MS programme and then ultimately what led you to become a facilitator in training?

 

Susan (06:37)

Yeah, what really drew me was the holistic nature of it. So like when I found the website and just started to kind of browse and see what the components of the program were, it was the holistic aspect. was that it was considering the physical activity and exercise part of things of helping people to live well with MS as well as the, of course, the diet piece and then the stress management piece and all those different pieces just were quite familiar to me in the sense that it’s how I try to live my life, even as someone who’s not living with MS. I try to bring those pieces into my everyday. And as I was just saying, it’s kind of how I support people as well through my work, through that physical activity piece and the stress piece and getting out into nature.

It was also familiar in the sense that the family member that I’m supporting is, I would say, also living a very similar life and trying to incorporate all those pieces, even prior to living with MS. I had been looking for a group or organization to connect with to offer my knowledge and my skills. And I hadn’t sort of found one for a while I’ve been looking, but because of how holistic this program was and then my personal, then became my personal connection to MS as well. it just made sense to.

When they were looking for facilitators to apply because it just felt like the right moment at the being in the right place at the right time kind of thing in terms of the timing. So it just felt like a great organization too and I’m glad that I’ve been welcomed in.

 

Overcoming MS (08:29)

And what have you taken away from your experience as a facilitator in training so far?

 

Susan (08:34)

Oh, lots of things I would say. It’s been since about August or September when I came on board. One of the first things I would say is just the dedication and the passion, the hard work of the OMS staff and the other facilitators in trying to bring awareness to the role of a lifestyle approach to helping people live well with MS. There’s just so much positive drive behind the scenes that I’ve seen, whether it’s you know, watching previous webinars or attending online events or just being in meetings and working with my mentor, Heather, who’s also a facilitator. Yeah, just seeing the dedication and the passion behind the scenes has been really inspiring. Like I work primarily alone, so it’s just been really nice to be part of that sort of atmosphere. Another thing that I’m taking away so far is the, just it keeps being reinforced how individualized everyone’s experience is with living with MS it obviously impacts everyone quite differently based on, you know, what the disease is. So that, you know, I hear that in people’s stories all the time and it just reminds me how important it is for treatments that people are receiving, whether it’s from healthcare or even the care that they’re giving themselves, whether it’s through the lifestyle approach or otherwise, like how individualized and tailored that needs to be as well.

How much that change can change for someone within their lifetime as well. Another thing is just the need for more healthcare professionals to be aware of the growing evidence behind the lifestyle approach to living well with MS. And if people are gonna continue to be skeptical, that’s one thing, but just to be open to if someone is a healthcare professional working with people with MS, the need to just be open to at least hearing people’s stories about, I’m trying this approach and, I really feel like it’s helping me and just being open to those stories rather than just kind of closing off or shutting people down. So I know there’s a lot of, I guess that’s another thing I’ve taken away so far, there’s a lot of behind the scenes work trying to raise awareness among healthcare professionals that this approach is out there, that there’s evidence behind it and people are employing it and seeing positive impacts.

 

Overcoming MS (11:16)

I’ve found in the healthcare systems there seems to be they need a burden of proof that to say to advise things it needs to be absolutely proven that these things will happen. Which interestingly they said arguably whether smoking was proven to cause cancer was questionable before they started to say you shouldn’t smoke, but it was so obvious. But I was actually told by my neurologist when I said this is the approach I’m following, and he said, well, yeah, it’s not official advice. However, just think about the best and worst case scenario. And the worst case scenario is you might miss eating some foods that you’d normally eat and most of which are actually not considered that healthy anyway. But even if the MS side of it doesn’t do anything, you’re reducing your risk of heart disease, cancer, diabetes, and you’re at a long list of things. Even without the MS side of things, this is just a healthy lifestyle. So doing mindfulness, exercise, eating well, it’s not gonna be a bad thing.

 

Susan (12:20)

Absolutely,

 

Overcoming MS (12:21)

And so how have your experiences as a physiotherapist, a Pilates instructor and mindfulness facilitator shaped how you think about health and well-being?

 

Susan (12:32)

Yeah, think those early years of being a physio and working in the fast moving clinics, high volume clinics, I don’t know if that’s necessarily shaped how I think about health and well-being, but it definitely shaped my approach to how I want to support people with their health.

I came into physio thinking that it was like a very active and empowering approach. And not that it’s not, this was my experience working in the settings that I did work in. the way I saw it was, I’m not prescribing medicine and I’m not doing surgery. And of course there’s a place for those things, absolutely. But instead I’m meeting someone where they are in terms of, you know, where their body is at, how their body is functioning and I’m helping them use their body based on where it is to get to where they want to get to. So to me, it just felt very active and very empowering. But as I started working, and again, maybe it was the setting, maybe I just didn’t know differently, but I also didn’t see it being done differently. It just ended up feeling quite passive and reactive, also focused on the short term. And I think I kind of just felt stuck in that, know, I’m the fixer of your problems sort of mentality and role, which is really not sustainable. And it overall didn’t feel aligned with, how I saw health, which was, we need to take that whole person approach.

 

I, from the get-go, kind of thought we need to get people to be more active participants. It’s not just about receiving that passive care. Again, there’s a time and place for sure. So that’s why I made all those changes that I described earlier on in becoming a Pilates instructor and then finding mindfulness and bringing that in. And then finally coaching and the approach that I take now where helping people just take ownership of their health. So I’m grateful for those early experiences as challenging as they were. And sometimes I wonder why I stayed in those roles as long as I did. But trying to practice what I preach and be kind to myself, it’s how it was. But yeah, it’s what got me to where I am now, where I feel things feel a lot more sustainable in how I’m working. And I think that’s a big part of health, right?

 Is finding ways to take care of yourself that are sustainable. it’s sustainable for me as a role that I have, but it also helps people take sustainable actions. And I think with the way that public health care systems around the world are, the state that they’re in, where they’re, overburdened, overwhelmed, I think an approach where or helping people take ownership and it feels sustainable to us as practitioners and therefore maybe reduces burnout. I mean, I think that could only be good things to come out of that. So yeah, I think it wasn’t so much how I think about health that changed, but more my approach and coming into kind of alignment with those two things.

 

Overcoming MS (15:47)

It’s not too late to start lifestyle changes to improve your mental and physical health this year. The new version of our free six months to Overcoming MS course has launched in the LiveWell Hub. You can join today, adopt the full overcoming MS program or opt for individual pillars, diet and vitamin D, physical activity or stress management at your own pace. Visit hub.overcomingms.org to find out more.

 

Overcoming MS (16:15)

So you’ve mentioned a bit about the coaching side of things. So could you explain a bit more about how coaching fits into the way you support people in general?

 

Susan (16:24)

Yeah, absolutely. it’s actually quite a big part of how I support people nowadays. So maybe the best way to explain it is as physios, when we go take a course, let’s say a course in acupuncture, we might say something like, okay, now I have this additional tool in my toolbox. I have this acupuncture tool that, you know, when someone is in front of me,

 

I’ve got all these other tools in my box and I might pick and choose the tools that work best, that I think might work best for the individual in front of me. So some physios will use coaching as one of those tools where they can just kind of pick up that tool and in this moment it might be helpful. For myself, I don’t see it as a tool, but something that I use like full throttle as my coaching mentor assess, so it’s my approach to how I help people rather than a tool that I kind of reach for. So let’s say we’re in a physio session, you and I, so like I said, I work virtually, so it would be similar kind of setup as we have now.

 

So you’re the client and I’m the physio. And let’s say you’re living with MS and you want to make exercise a regular part of your day, but you’re having a hard time staying consistent with that. So let’s say you understand why exercise is important to bring in and you totally get that piece and you even maybe know what kind of exercise you want to bring in, but when you’ve tried in the past, you’re just not able to stay consistent. And you think maybe fatigue is a big part of that. So let’s say that’s the scenario. So if we were in a physio session, we would essentially have a conversation about it. So coaching is essentially a conversation. So it would start off by just getting really curious with, you know, what’s going on, what your situation is.

What your thoughts about it are and kind of where you see yourself getting to or where you want to get to. So lots of questions and opportunity for you to just think and pause and reflect. we might, through the conversation, realize that maybe it’s not fatigue that’s the limiting factor. Maybe it’s, and this is, yeah, maybe it’s more, someone worried about being seen as having a disability if they’re exercising outdoors, whatever the case may be. So something else might kind of rise to the surface as we kind of dive under the iceberg, so to speak. Got all these analogies coming out. And you or the client might start to see things from a different perspective, just from through the questioning and through hearing yourself speak and taking moments to kind of pause and reflect. And with time, like solutions or ideas start to come to the surface that, that essentially have come from you as the client that you want to take forward to, to bring into your life, to try to get to, you know, bringing exercise into your life consistently. So then you might commit to one or two of those. We would go away and then, come back a couple weeks later or whatever the timing is and then check back to see how things went and move forward from there.

 

Overcoming MS (19:50)

You mentioned you’ve got a family member with MS. So what have you learned from being a supporter of a family member navigating MS and how has that shaped your perspective?

 

Susan (20:02)

Yeah, so the biggest thing I would say that I’ve learned as a supporter is how important it is to take care of myself as someone who is acting as supporting someone who is living with MS So for me, that means especially when they’re doing well or they’re stable, so that then when knock on wood they’re not, then I’m just better able to support them without having this huge negative impact on myself as well. So when my family member was first experiencing symptoms and lots of things were still on the table. Maybe it was looking like MS but nobody was really saying, making the diagnosis and the whole diagnosis journey. It was a very stressful time as I’m sure lots of listeners can relate to. Of course it came out of the blue as you say. But I was so grateful that I had been taking good care of myself leading up to that point. Of course I had no idea it was coming.

But, and by taking care of myself in this case, I’m referring to practicing mindfulness and then meditation as well. that’s just the piece that really stood out to me through this experience that I’m so grateful that I had ways to ground myself in the moments when, when my mind started spiraling about the possibilities of what’s going on here and which, and being in the present and being calm from within just allowed me to support my family member then from a better place, right? and also just being able to still do mindfulness practices while this was going on was a nice surprise. I know in the past when, stress was, had built up, I would probably let go of my practice. But in this scenario, I still found myself being able to practice maybe not as much as normal, but, I think that just, and it kept that ability to be present, kind of top, like easy to access. And I think the other piece is, you know, these stressful events can have a long lasting impact after the stress. The stressor is gone, so to speak. So, but I think having that practice and being able to continue it throughout the process, just made it so that that impact of the whole event wasn’t as bad on myself and my health and different aspects of my health. So I just know that I need to continue to keep practicing because obviously MS is a lifelong journey and there’s other things that can come up as well, not just that. So if I want to be a good supporter, then I need to keep practicing. And I think even in this role as a facilitator and hearing people’s struggles, of course we’re not just hearing struggles, we’re hearing the good parts as well, but just absorbing that as a facilitator can have its impact as well. So just continuing to take care of myself and check in with myself and I think will help both of these roles.

 

Overcoming MS (23:09)

So in a broader context, what does living well mean to you, especially in the context of a long-term condition like MS?

 

Susan (23:16)

Yeah, so the first thing that comes to mind is that, it’s a condition that impacts everyone quite differently. So, you know, how someone chooses to go about trying to live well with MS is going to be very different, but there’s definitely a few things that stand out. So one of which is finding some way to have a sense of control or agency, I would say even in your day to day.

So whether that’s through, you you’re taking a lifestyle approach and you’re finding time to exercise every day or doing a mindfulness practice or a combination of things or taking, you know, your medicine, whatever it is, just finding some kind of daily consistent action as best as possible to have that sense of agency and control that, what you’re doing is helping you now and it’s gonna help you in the future.

At the same time, I know there’s a lot of uncertainty with living with a disease and people don’t know how it’s going to impact them down the road. So kind of balancing that out with some level of acceptance of that that’s kind of how the disease is. But at the same time, having that sense of control can help out with that piece.

Relatedly finding a sense or practicing hope as well. So, you know, I said this already, but that, what I’m doing today and is helping me today, but it’s also helping me down the road. whether that’s, connecting to stories of hope, like being part of the OMS community, there’s lots of stories of hope that one can access just to see. The actions people are taking and the positive impact it is having on their lives over years. So I think finding that hope is important. Another thing too, it’s all about practicing, I think, right? So practicing being present, can definitely help to live well with MS. I just think about, there’s probably lots of thinking back to how things were in the past and thinking back to, I was functioning this way in the past and now kind of look at where am now. Or there might be a lot of worrying about the future, right? I spoke about that uncertainty piece. So as much as possible, practicing noticing when that’s happening and having ways to bring yourself back to the present moment to, ease the anxiety and tension and that tends to happen when we yo-yo back and forth between the past and the future. Relatedly, and I’ve heard this a few times from the community, so practicing self-compassion I think is another important one, so being kind to yourself. I just heard a number of people recently say, I’m just realizing that I’m being too hard on myself. I need to be kinder to myself. And I think that’s completely normal experience, living with a chronic condition, absolutely. But understanding kind of what self-compassion is and what being kind to yourself means to you. And then having ways to put that into action. So whether it’s, saying kind words to yourself or having like a particular physical gesture or taking some kind of self-care action, whatever it is, it’s gonna look different for everyone. But, and then knowing, having that in your toolbox, as I spoke about earlier, so that you can access it easily and bring yourself back to being kind to yourself. Like I said, all of this, I think, is not a one-time thing. The being present, the feeling hopeful, to having a sense of control and agency and being kind to yourself, it’s all a lifelong practice really. And the last thing I’ll say is having a connection to a group that’s like-minded and is experiencing similar things to you. So whether that’s Overcoming MS group or somewhere else, connecting to a group that is going through similar challenges that you can ask questions, bounce ideas off of, receive support, and also give support. think both of those are important. And maybe the most important thing is just knowing that you’re not alone in the challenges and the struggles of living with MS or if we’re talking about a different condition. I think that’s a key piece.

 

Overcoming MS (27:50)

And as a final question, what are you most looking forward to as part of the Overcoming MS community moving forward?

 

Susan (27:59)

I’m looking forward to just continuing to get to know the community and connecting with them. So it’s probably going to be mostly online for now, but hopefully one day connecting with people in person as well. Continuing to hear people’s stories of how they’re trying to live well with MS and the impact that it’s having, I’m sure. I’ve already been quite inspired by what I’ve heard so far. I’m sure I’m going to continue to be inspired and also to bring my passion and experience to help support the community as well through different events. So yeah, I’m just looking forward to continuing to be part of the community.

 

Overcoming MS (28:41)

Excellent. with that, I’d like to thank you very much for joining us. Susan Cryzo.

 

Susan (28:47)

Thank you so much, Geoff.