Occupational Therapy: Redesigning Your Life With MS

Occupational Therapy: Redesigning Your Life With MS

Episode 175 – Podcast Transcript

[(0:25)] Stephanie Buxhoeveden: Welcome to the Can Do MS podcast. I’m your host Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we’re excited to welcome our guest, Dr. Rebecca Cunningham, who’s a doctor of occupational therapy at USC. Hi Rebecca. We’re so excited to have you here today.

[(0:42)] Rebecca Cunningham: Thanks, Stephanie. I’m happy to be joining you all today.

[(0:45)] Stephanie: Wonderful. So I love occupational therapists, but could you maybe explain what occupational therapy is and how it specifically benefits people with MS, maybe for those in the audience that aren’t already familiar with it?

[(0:58)] Rebecca: Absolutely, and it would be fairly normal for folks to not be as familiar with occupational therapy. I think people are really well-versed in understanding the role that like physical therapy or PT plays in the healthcare system or in the management of MS, but sometimes they’re less familiar with occupational therapy. So first off, when we’re using the word occupational, we’re not necessarily meaning just work, right? So usually when people hear the word occupation, they think immediately about paid employment, and while certainly we can help folks participate in paid employment, that’s really not the only way we’re viewing or defining that word.

So gosh, in the infancy of occupational therapy, the term occupation really meant any activity in which somebody meaningfully used their time, i.e. any activity that anyone meaningfully occupied themselves. So when I’m thinking about occupations, I’m thinking about a whole host of activities that folks participate in maybe on a daily basis, a weekly basis, a monthly basis, or over the course of a year and that can be something as seemingly simple as brushing one’s teeth to as complex as going to work or going to the movies or volunteering or playing with their grandkids, et cetera.

So my job as an occupational therapist then is to be able to help folks better be able to participate in these meaningful activities and occupations that they want or need to do, but are having a hard time doing either due to illness, injury, post-surgical status or chronic conditions. So how occupational therapy really plays a role in supporting folks with MS could be specifically focusing on helping them better be able to participate in those day-to-day ADLs or IDLs or what we call activities of daily living. The things we do on a really frequent basis. Or it could be doing a different type of support through the type of work that I do, which is called Lifestyle redesign, where we’re very much focused on helping individuals better be able to participate in health promoting lifestyles through different habit and routine changes and modifications so that we’re helping them engage in activities that are going to better support their overall health and quality of life. And also their ability to manage their symptoms and condition in a better capacity, whether that’s engaging in physical activity routines, better sleep better emotional regulation or self-regulation routines, rest, et cetera.

So we can focus in on those really day-to-day activities such as brushing one’s teeth or showering or getting dressed. But we can also, as occupational therapy practitioners focus on more of one’s general overall lifestyle and helping them to better be able to manage their chronic condition and their day-to-day symptoms and therefore impacts on their activity participation.

[(3:52)] Stephanie: Yes, I think that phrase lifestyle redesign really captures it perfectly because it’s neither a positive or a negative thing, it’s just a fact of living with MS is that we do have to adapt our lifestyles to the disease and it’s a constant iterative process, right? Because we’re not stagnant through our lives. So I wanted to talk through how OT and lifestyle redesign can help through some of the big things in your life. So like many people with MS, I was diagnosed in my twenties, I was 25, I was in grad school and immediately had to learn how to balance the demands of school with taking care of my health. It was so, so overwhelming. So can you talk specifically about the challenges that students with MS face in school and how can OT help ’em succeed?

[(4:46)] Rebecca: Yeah. I think to your point, right, a lot of folks receive their diagnosis of MS early on in their life when we’re still developing as people, right? We’re still figuring out who we are as individuals in a variety of different environments and contexts, school potentially being one of them. So we can certainly help folks with managing like the symptoms that impact their school participation such as fatigue, such as cognitive symptoms, like difficulties with memory or attention or concentration. And we can also help with things like how pain potentially impacts their education participation.

So we play a role in the symptom management piece and really grounding it within the educational context, whether that’s while they’re in person or on site receiving educational instruction or whether they’re doing that remotely via synchronous or asynchronous course involvement. So I think there’s a lot of role or a significant role the OT can play in the symptom management piece specifically within the educational context.

But then we also have the ability to help folks gauge or access with reasonable accommodations, right? And supporting them in learning the communication and self-advocacy skills that are required to be able to access those supports and receive them in their different classroom settings. And that can sometimes be a really challenging thing to do to engage in that level of advocating and communicating for oneself while you’re also managing your health, while you’re also going to healthcare appointments and while you’re also engaging in school, often full-time education for some folks and potentially have a family on top of that and working on top of that, that’s a lot of different hats to wear.

So having support with that self-advocacy process can be instrumental for folks getting access to the supports and resources that are going to help them to really be successful in the educational environment. And then I think finally helping individuals figure out how to balance all of those roles, right? And responsibilities that they’re managing while participating in school. So really looking at their time, how are they managing and structuring their day-to-day time use their weekly time use their monthly time use and their time use over the course of like the quarter or semester and how are we breaking things down to try to make everything that is of high- of a high priority fit while limiting the risk of overexerting oneself and having their symptoms exacerbated in the process. So it’s a lot of blending of these different kinds of ideas. So talking about fatigue management blended with time management and adding in these supports and resources at the same time.

[(7:34)] Stephanie: Yes, that would’ve made such a huge difference in my life. Definitely did not know how to advocate for myself or ask for help or really manage my time in a way that didn’t completely burn me out. So I love everything that you just said is so important.

[(7:49)] Rebecca: I appreciate what you just mentioned about asking for help. Asking for help can feel stigmatizing, asking for help can feel like we are failing. Asking for help can feel like we are giving up in some capacity. So part of my work with anyone who has MS but specifically those within an educational setting trying to get access to accommodations is making sure that they’re recognizing that asking for help is not a sign of defeat or being less than but as a positive step towards being able to advocate for themselves and manage their health effectively.

[(8:26)] Stephanie: Yeah, the audience only takes one thing away today. I want that to be the nugget because it is so important to seek help and not to just try your best, burn yourself out. Every little bit of advice that I’ve gotten along my journey with MS has honestly changed the way that I’ve designed my life around it and has made such a huge difference and the only regret I have is not learning these tricks sooner. So I think the sooner you get connected with occupational therapy in the disease course, the better because we tend to not consult OT and PT until we have significant challenges. But what a difference it could make early on before you’re really significantly challenged and what an incredibly powerful tool it could be.

[(9:11)] Rebecca: I totally agree. The more proactive we can be in accessing support and resources, even if we feel like our symptoms or our health is not negatively affecting our activity participation at that time, the more proactive we can be, the more equipped we are with tools and strategies when it happens, right? Cause I’ll share that I also have a chronic condition. I don’t have MS, I have a rheumatic autoimmune disease, and from my own personal lived experience, I know that my background as an OT has equipped me with the skills and knowledge to be able to handle life’s challenges and events as they come up or changes in my symptom presentation over time. And like I think about if I had not had these tools and strategies, how would I have navigated those challenges, whether it was a hospitalization or needing to go out on FMLA and medical leave of absence, if I didn’t have the background that I did or have my healthcare background and knowledge, I don’t know how I would’ve handled those situations. So the more proactive we can be in developing and cultivating these skills, the more prepared we are when challenges come up in the future.

[(10:17)] Stephanie: Absolutely. Thank you for sharing that. I think it’s incredibly important to see how you can really increase your resilience just by reaching out and getting a little bit of help. So fabulous. And now we talked about being a student, what about employment? So how does OT help support people who are trying to work and balance MS and navigating workplace challenges?

[(10:42)] Rebecca: Yeah, so some of what I mentioned in relation to those engaging in an educational environment would still be applicable for those trying to participate and maintain their participation in work at the highest level possible. If it feels appropriate and the individual is open to the idea, we can pursue reasonable accommodations for the work setting. Every work environment is a little different in how you go about accessing that resource or that support. And some work context and environments are gonna be more supportive than others. I have had some clients apply for accommodations, they get approved immediately and implemented successfully and consistently. And that is a wonderful, beautiful thing when it happens. However, that’s often the exception and not the rule unfortunately.

So even though the Americans with Disabilities Act is meant to lend itself and provide protections for folks with disabilities in the work context, that doesn’t always mean that the work context is abiding [laugh] by those policies or honoring them in the way that we think they should be or that they are required to by law and that can make some challenges sometimes in navigating that process. And I’ve had a handful of clients end up needing to file reports or file complaints against their employer or get legal assistance involved in order to pursue that. School tends to be a little bit easier. I’m not gonna say that it’s always pretty [laugh] or that it always is successful. But the work context can be more challenging, I think is the nice way of saying that [laugh].

But so I do work with folks on navigating those systems and processes and helping them to manage stress and anxiety that can come up along the way, especially because disclosure can be a very intimidating process and it opens ourselves up to the potential to be judged or stigmatized or discriminated against by others around us. So not only am I helping with like the self-advocacy part of things, but it’s also helping them with managing their emotional reactions or needs during that disclosure and accommodations application process so that we’re taking care of them, not just from like, you know, the support side of things and the advocacy side, but also from the emotional regulation side of things.

So I think that’s a really important part of helping folks feel successful in the work setting, and then it’s really looking at how fatigue is impacting their work and how are we applying activity, pacing, energy conservation and energy optimization strategies to the work setting and the way one engages in their work responsibilities over the course of the day. You know we were talking about this earlier, but it’s really, well, let me back up. I should say that the environment that we live in is focused on maximizing productivity in the workplace, right? We need to get the most amount done in the smallest amount of time and that kind of pace doesn’t really lend itself well to those of us who have chronic conditions especially when fatigue or pain or migraines or weakness or spasticity are involved, right? Because we’re going to burn through our resources much faster.

So that’s where the fatigue management principles really come into play, and helping to figure out how to integrate them into the work environment and the flow of the work day to try to reduce the risk of overexerting or burning out because we’re trying to keep up with demands that aren’t really necessarily realistic for where we are in our health journey or our disease process. To varying degrees, we work with employers to help them figure out like what are health promoting supports or like prevention types of programming that they can put into place in their work setting. I don’t do as much of that, but that’s certainly a role that occupational therapy can play that tends to happen more in larger companies or larger institutions where OTs play a role in that kind of prevention wellness health promotion programming. But that’s certainly an important role that OT can play in in those types of settings. And I think something that more and more employers should be thinking about is coming up with developing and implementing some of these programs to not only help those of us who have chronic conditions or those who specifically have MS, but their employees as a whole.

[(15:19)] Stephanie: Yes. So many important points in there. I have found, you know, as I’ve lived with MS and I’m sure your lived experiences similar needs change and shift and I’ve had so many jobs. I’ve worn many hats throughout my career. I’ve had very physical jobs as a nurse and then now I have more of a cognitive load heavy position and it’s interesting how I’ve had to learn and figure out and adjust my lifestyle around those symptoms. So now I am getting up early in the morning and hitting most of my tasks in the morning when I’m the most cognitively alert. But then if I need to do a highly physical task, I usually can’t really rally to do that until later in the morning after, as you mentioned, medicines for spasticity have kicked in, or if I’m having pain or spasticity, it’s better to sort of hit that later in the day.

So sometimes it’s just hard to tease out what it is. You just know that you’re struggling to get through the day and there’s nothing worse than working your normal shift and then coming home and having nothing left of the tank for your family, for yourself and then, you know, you’re not having time for self-care. You’re not really enjoying your life, you’re just getting through the workday. So I think all of those things that you mentioned can make a huge difference if somebody can relate to that feeling.

[(16:44)] Rebecca: Yeah, I think a lot of folks can. I hear those similar sentiments a lot from the clients that I work with and I think part of it is also shifting how much of ourselves we give when we’re at work. Again, I think we live in a society and a culture that has equated work to purpose and meaning in one’s life and the primary means with which someone identifies or builds their identity around. And when we invest so much of ourselves in one activity like work, which isn’t necessarily, other than giving us money, right? And like our potential benefits or whatever we have, like, it’s not gonna give us anything more than that [laugh]. So it’s important for us to recognize when we’re potentially giving too much of ourselves to our work and our work environment and start figuring out ways to give less when it’s necessary so that we can protect ourselves and use our energy and our resources on things that serve us well both inside of the work environment and outside of the work environment.

[(17:56)] Stephanie: I love this. Occupational therapy is gonna make me redesign my entire life. [laugh]. Now let’s talk about parents. So fair parents living with MS, again, how does OT help them manage those physical and emotional demands that come along with it?

[(18:12)] Rebecca: Good question. So it’s an individualized process and I feel like I haven’t maybe mentioned that yet, but when I’m working with the client, it’s really an individualized collaborative process to identify like which components of, let’s say parenting in this situation are more challenging, and then analyzing problem solving and you know, building changes or using strategies in those particular activities that are going to make it a little bit easier to do, make it a more sustainable process to do and reduce that risk of like overexertion or burnout over time. I’ll share that I’m not a parent myself, so, you know, I don’t have lived experience in being a parent, but in talking with a lot of my clients, I can tell, you know, it’s a role that never turns off, right? A parent is a parent 24 hours a day, seven days a week, 365 days a year and even if their children are not living with them, right, they’re still carrying those roles and responsibilities of being a parent.

So everything that we’ve already talked about in terms of like fatigue management and pacing ourselves all still applies [laugh], right? I mean, we’ve talked about it in relation to school and work, but all of those same principles apply to being a parent and taking care of our children or our other loved ones who we may care for, right? So I think some common areas or activities related to parenting that tend to come up are helping kids with like their homework. If someone’s experiencing cognitive symptoms and fatigue, especially later in the day when homework hours tend to be, it’s figuring out how can we support you and feeling like you’re meeting your kids’ needs in that moment while not overexerting you in the process, right?

So that might be creating or assessing the environment in which you are engaging with your kids while they’re doing their homework and making some changes to reduce the amount of stimulation that you’re exposed to, right? If it’s like if you’re doing homework with your kid at the dinner table and there’s a TV on in the background because somebody else is watching television, you are- then your attention is being fought for basically, right? Because you’re focusing on your kid and their homework, but at the same time, your brain is still registering all the stimuli in the background, which then is competing for your attention and can make it more difficult to support your kid in doing their homework.

Also like making meals for the family, right? Or for one’s children can be a really fatiguing process ’cause you’re having to do breakfast, lunch and dinner or at however many meals there are in the day for this particular parent and family, and that can be fatiguing overall, especially if you’re using a lot of heat related sources like the stone or the oven because that heat sensitivity can impact symptom presentation. So it’s figuring out how can we modify the habits and routines surrounding the meal prep process to maybe do some of it earlier in the day and kind of spread it out over the course of the day or make larger batch meals that you can then use as leftovers for subsequent meals or for multiple days over the course of the week. But basically modifying the way that the individual is conceptualizing and engaging in these processes to make them a little more sustainable long term and successful to participate in while reducing the risk of making symptoms feel more pronounced or worse.

[(21:43)] Stephanie: Yes, I always- we actually just did a webinar on this. I always cook once and eat twice, whether it’s I am cooking one meal and that’s gonna be my lunch for several days. We always have leftovers at least one or two times a week because I love to cook. But it’s a lot of work…

[(22:04)] Rebecca: Yes, [laugh]

[(22:04)] Stephanie: …it’s so fatiguing. Cooking is great and then you gotta clean it up and so it’s great to be able to eat good food but only have to clean one round of pots and pans and it’s just a huge time saver and fatigue saver. And I love that you mentioned stimulation because I don’t think I had realized that that was such a big part of why I felt fatigued or maybe like a little cognitively scattered. And the second in OT told me to make my space quiet, to turn off the TV to stop multitasking cause I’m the multitasking queen and I always have music gone and I always- right, and there’s always a thousand things going on. But that’s where I was making mistakes at work is when I was trying to multitask. And so just learning that I had to slow down decrease stimuli and that I’m not cognitively slipping, it’s just that I need to be more aware of the effect that too much stimuli in my work environment has on the quality of my work. And that has made such a huge difference and alleviated a lot of my worries about cognition.

[(23:08)] Rebecca: Absolutely. I mean, every human being has different, what we call like sensory needs, right? Some people need pin drop silence in order to feel effective and focus and complete the tasks that they’re doing. While other people kind of thrive off of having more stimuli. Some people need the TV on or music or they need a lot of art on their walls, right, in order to feel like they’re regulated and able to attend. And that’s not just folks who have MS, it’s every human being. So I appreciate you bringing that up because it’s- it’s important to normalize that every human being has sensory needs and every human being’s sensory needs are different and it’s figuring out what each of us thrives in or is challenged by and creating an environment that supports what is going to help us stay optimally regulated.

[(23:58)] Stephanie: Yes, and be ready for maybe one day something that works today, not working in the future and be flexible. And that bridges nicely into the last question I have, which is, you know, the only predictable thing about MS is that it’s completely unpredictable. So it’s important for us to, as we’ve already talked about, be agile, especially when we’re in a time when we’re experiencing new or worsening symptoms. So how can OT, you already touched on this a little bit, but how can OT help accommodate increasing disability and help people maintain their independence?

[(24:34)] Rebecca: Yeah, so I think that there’s different approaches that an occupational therapist can take to support individuals in maintaining independence or the level of independence or interdependence that they choose or prefer over time. I think certainly if someone is at risk of falling or injuries due to their increasing disability or increasing challenges, it’s making sure that we’re ensuring safety first and foremost, right? Because if we get into a pattern of falling or sustaining injuries, that’s just going to further contribute to progression or the risk of disability over time. So I think safety is first and foremost.

And to address safety, you can do falls prevention training. You can look at home safety and making relevant modifications to reduce the risk of future falls and subsequent injuries, whether that’s in the bathroom cause the bathroom is the number one place falls take place in the home. So that could be looking at the safety of the shower, of the toilet, of the space around your sink or wherever you’re washing up and brushing your teeth, right? Or making sure that there’s appropriate lighting when we get up at night to use the bathroom, right? Or we are coming back home and we haven’t turned on all the lights yet, but we’re rushing to the bathroom because we gotta go. Those are all prime risks or moments for falls and injuries to be sustained.

So I think a thorough home safety evaluation is important and integrating modifications to the home to ensure safety as much as possible. Additionally, if folks are feeling like their mobility has become more challenged they may not even necessarily be falling but if they feel like they are not as stable or sturdy in their movement within their home or out in the community, looking at mobility devices can be an appropriate next step. Now everyone has a different perspective and like level of readiness as to when they use a mobility device. I think a lot of clients that I’ve worked with have described the fear of being judged or stigmatized by people in their environment or in their communities, especially if they are not of an age that people stereotypically think of folks using mobility devices, whether that’s a cane or a walker or a manual wheelchair or a power wheelchair or a scooter. I think as a society we tend to equate use of those devices to being older adults, right?

And so if that’s the perspective, then it makes sense that we would potentially be fearful about using those devices when we’re in our twenties, our thirties, our forties, our fifties for fear of what others will think about us, or for fear that people will question why we’re using them in the first place and then that opens up the whole can of worms as to how much do I give of myself to this other person in this response, and how much do I just let go and ignore the looks or the questions. I’ve had similar conversations with folks who are considering getting a placard for their vehicles, right? And using accessible spots in parking lots or parking structures and the looks that they sometimes get because they don’t quote unquote look disabled. And those can be challenging conversations to have because it forces people to contend with a point of change in their function that they didn’t anticipate happening at a certain time point or at a point in their lifespan they didn’t ask for, we didn’t volunteer for, but is happening nonetheless.

And so there can be a lot of conversations about how to manage our emotions in response to these changes and that can be, you know, using cognitive self-regulation or emotional regulation strategies to try to shift our perspectives and mindsets about these things or it can be, you know, learning deep breathing techniques to use when they’re first using their mobility device out in the community and they’re worried right about what’s gonna happen. So I think in addition to addressing like the physical concerns related to changes in disability or progression over time and ensuring safety, we also wanna make sure that we’re addressing the emotional regulation needs that come up as someone’s health journey continues and their functional abilities progress or change over time.

And as an alternative, like part of that is to say that, you know, as an OT, yes I can address emotional regulation and I can help with developing those habits and routines, but sometimes we need other team members, right? So sometimes I will recommend that individuals start working with a therapy therapist, right? Someone who’s doing more traditional cognitive behavioral therapy or coping support or finding a support group to help with these changes over time or if they have like a spiritual or a particular religious affiliation, like seeking those community spaces to help with the emotional impacts of these types of changes over time.

[(29:43)] Stephanie: Yes. I mean, living with MS for a long time, I think at first I was very fearful of showing, as you said, signs of weakness, which of course are not signs of weakness, and now the only thing I care about is preserving my energy so I could do everything that I love to do. Maybe not all at once, but at first when I was diagnosed, again very young, I was athletic. You would never know, even probably today looking at me that I have MS. I was very self-conscious, as you were saying, and I didn’t want to use mobility aid or accept any help. But now that I’m a little bit more of a veteran with this, I’ve learned that if I wanna keep doing the things I love, I have to make adjustments. I have to redesign my lifestyle around the symptoms and that is not a bad thing.

So using the handicap placard to save energy, life changing, oh my gosh, and, and my cane. I used to hate my cane, but what I started doing was when I need it to get around often I’ll use it like on vacations or if we’re doing a lot back to back days, I’ll need it and then I get a sticker from everywhere I go with it and I put it on the cane. And so now somebody’s- yeah, so now if somebody’s like, “Oh, why do you have to use a cane?” You know, I say, “I have MS,” but look at all these cool places I’ve gone because I use this and if I didn’t have this, I would’ve sat those experiences out. And it reminds me too, like the purpose of it is to help me keep doing the things I love and I think that’s the most important thing.

[(31:19)] Rebecca: And I think that’s a really important point that you’re bringing up, is I think a lot of what it takes to manage a chronic condition is managing one’s perspective on the changes that are being recommended or in some situations required of us and acknowledging, yes, these reflexive negative emotions or thoughts that come up about it, but then intentionally trying to shift those thoughts a little bit to also acknowledge what the change is allowing us to do and how it’s going to connect to our lifestyle, our quality of health, our wellbeing, and our ability to participate in our day-to-day lives in the way that we want to and that is meaningful for us.

[(32:07)] Stephanie: Yes, I think that is the most important thing and I think a lot of people will be able to relate to that. So thank you for coming on today and sharing your occupational therapy wisdom. I learned a lot. I hope the people listening got a lot out of it, and just really thank you for your time.

[(32:25)] Rebecca: Thank you Stephanie, for having me. This was a pleasure.

[(32:27)] Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you liked this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do MS podcast. Until next time, be well and have a great day.

[END]

This podcast is possible thanks to the generous support of the following sponsors: