Speech-Language Pathology and MS: Support for Thinking, Communication, and Daily Life

Speech-Language Pathology and MS: Support for Thinking, Communication, and Daily Life

Episode 192 – Podcast Transcript

[(0:24)] Stephanie: 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. Joining me today is Lauren Schwabisch, an experienced speech language pathologist who spent her career in neurorehabilitation and now runs a private practice in Virginia. Lauren, welcome.

[(0:41)] Lauren: It’s so good to see you.

[(0:42] Stephanie: So I think that most people are aware that SLPs can help if you have third speech or trouble swallowing, but that’s really just a piece of what you do, right? So can you explain the broader scope and especially when it comes to how MS can affect our thinking and communication.

[(1:00)] Lauren: Happy to do it. I think any speech pathologist can identify with having to explain what it is that we do because there’s a lot and it can look different depending on where you’re at. So, uh, yes, a speech pathologist is certainly the best person to help you with swallowing, with speech sound changes, of course. But because MS can affect all different parts of the brain, one of the biggest things that I think gets maybe overlooked is cognitive communication. And that’s the area that I’m really passionate about. So cognitive communication is essentially the thinking skills that we use to interact with people during our day. So cognition is, in addition to memory, which most people think about, includes things like attention and processing information. So the things that we hear, the things that we see, the things that we touch, uh, the things we experience. And then it’s those higher level skills like organization, reasoning, problem solving, and then the executive functions, which I always say is like the penthouse skills, the ones that we really use to take advantage of goals, planning, self-monitoring, initiating tasks. So those cognitive skills interact with the domains of communication, which does include speech, but also includes word finding and reading and writing and listening. And so it’s this sort of like intersection of cognitive communication that we really need to be able to fully participate in life. Um, and so a speech pathologist is ideal to work on those skills, especially in functional real world situations. So someone who is struggling with, let’s say, you know, communicating with friends or managing information at home, um, those real world situations are ideal for therapeutic interventions.

[(2:56)] Stephanie: Yeah, they’re surprisingly complex, these things that we do every day. And I know when I was newly diagnosed, I had no idea SLPs really could help you with things like thinking and planning. And I think a lot of people with MS just quietly struggle with those issues because they’re not aware of how much help is out there and available. So can you walk us through what those thinking and communication changes look like in real life? And then I know you use a framework that really helps make sense of how all these symptoms interact. So could you share that with us?

[(3:31)] Lauren: Yes, for sure. Well, first, I will say that, um, about 40 to 60% of people the research has found who live with MS will experience cognitive impairment at some points. We really want to normalize that. Um, I think that the model that makes the most sense to me is something called the model of cognitive communication competence. And it, um, was designed by a speech pathologist researcher named Sheila McDonald who looked at acquired brain injury, which of course MS is an injury to the brain. And so what it really does is it characterizes competence, right? How well we are able to do the thing we wanna do, be it. Be it communicating with family or in the community, socially, at work, at school, in managing information and solving problems. And it looks at all of these different domains that affect cognition and communication. So that includes physical and sensory changes. It captures emotional and psychosocial issues and domains. So if people are experiencing anxiety or depression or change in identity, that comes in. The physical and sensory, of course, we know fatigue, any sensory changes with vision or hearing or how we’re processing environmental cues. And then it really looks at the context demand. So what it looks at is how well I communicate in, let’s say, a tense situation where the demands are high and there’s a lot to do. And maybe I have multiple partners that are communicating with me and it’s really challenging. Um, and then there’s different scenarios where it might be easier. There’s not so much demand. It’s a little bit lighter on me. And then the big piece that I love is the self-regulation domain, which is to say that all of these things require the skills to be able to identify and regulate each individual domain so that one can remain competent. Uh, I think it’s a really helpful way when you show someone, you know, this chart which is crazy. It’s got all these boxes and arrows and it basically says everything is interconnected. But it really helps someone to validate when they are experiencing, let’s say fatigue, right and maybe some anxiety or distress emotionally that that has an intersection with how well they’re able to let’s say process information or remember something especially in a complex demand like being at the doctor’s office, right? And receiving all of this information or even being online and reviewing, you know, all the wonderful websites and resources that are out there. But if you’re experiencing symptoms, you might not have successful information processing. You might not be reading and remembering all the details unless you learn how to self-regulate. And that’s really where the speech pathologist, I think, can be very helpful, again, in real world environments where those abilities are really necessary to function.

[(6:27)] Stephanie: Yeah. And that’s such an important part about living with MS. It’s, know, the only predictable thing is that it’s completely unpredictable, but understanding that connection between symptoms and your thinking really helps you get a clear picture of how a mess affects you, but also how to manage those day-to-day challenges. And what you just said, uh, made me reflect on, you know, I’ve learned in the last 12 plus years of living with MS that overall my cognition is still great, but I do have to do things differently. I used to be one of those that can have music, the TV on, somebody talking to me and I could multitask like a champ. So I don’t know if it’s MS or just age, but that’s not really optimal for me anymore. And then I used to work in a lab doing basic science research and you’re working with these very precious specimens. I had to learn that if I was fatigued or if my legs were really hurting, I was in pain, was having other symptoms. No matter how hard I thought I was focusing and paying attention to the task, the more prone I was to making mistakes. And at first that was scary because you never want to admit that maybe you’re not doing as good a job as you want to do. But it was less scary knowing that just being in tune with the symptoms and knowing that, okay, like maybe today’s not the day I do this intense experiment. Maybe today is a, I will get my administrative stuff done. And then when I’m feeling like I’m firing on all cylinders, if you will, then I’ll go do that task.

[(8:01)] Lauren: Right. So think of all that. That’s, you know, being attuned is that’s the self-monitoring piece, right? That’s an executive function. Um, so if you are someone who maybe is having those experiences with pain or fatigue, but then your executive function is a little shaky, it’s harder to regulate. So, but I think lived experience with MS teaches you it’s probably the best teacher. And then therapeutically, especially in a non-judgmental space, really with someone who’s like, okay, let’s just crack the code here. Let’s figure out what you can do when you’re feeling, again, great. And when you’re not so great, how can you manage this so that you can continue to function in the spaces that you need to?

[(8:37)] Stephanie: Yeah. So is that sort of what it looks like when you’re in with an early onset patient or somebody who’s newly diagnosed and those first conversations?

[(8:45)] Lauren: Yeah, you know, I think, um, looking at the research, uh researchers who talk to focus groups of people who are living with MS, they said that they wanted to be educated about potential cognitive communication changes at the time of diagnosis. And they wanted it to be in multiple modalities, right? So they wanted to hear about it. They wanted to read about it. They wanted to watch a video about it. They really wanted a lot of information available in ways they could access it. So I think that, you know, early, um, early diagnosis is probably an ideal opportunity, but I do think, um, it’s not always happening, right? So people want that, but that’s not necessarily the reality of the referral pathway to a speech therapist. But yeah, that early diagnosis opportunity is a chance to establish rapport with a clinician who can really understand what your life values are, what your strengths are. Think about being proactive with strategies. Think about learning what cognitive communication symptoms can look like and really help people to build I think that confidence that they can manage those. Um, it’s really important, I think, for people to hear that they don’t have to wait until they’re really, really struggling to get help. Because at that point, it’s actually, it’s harder to find help versus maybe earlier on. Um, and one strategy that I tend to do a lot with folks who are both early diagnosed and who’ve been living with it for long time are the four P’s, which is a great example of maybe a proactive piece of information. So the four P’s stand for, uh, prioritizing, pacing, planning, and positioning. And so the examples you gave of working in a lab, right, of being able to maybe position yourself so that your leg pain isn’t, you know, a terrible distractor while you’re trying to focus, or planning your day so that you’re tackling maybe things that are a little bit less demanding at the end of the day when you’re tired versus at the start of your day when you’re fresh. Those are cognitive strategies. And so imagine if, you know, someone who’s newly diagnosed had a chance to sit down with a clinician and hear this information and maybe even troubleshoot just a little, you know, some things that might make living with MS and, you know, living life more realistic. I think that would be so ideal, um, but it does take some education advocacy in the global healthcare community, I think, to make that happen.

[(11:00)] Stephanie: Yeah. And you made a wonderful handout on the four P’s, which we are going to link to the description of this podcast. But after reading that, you know, I did implement that prioritization system. So I work a very busy job. Home is busy. Life is just busy, right? And under the prioritize P, you suggested breaking down your week by things that have to happen on that day, things that can wait, things that won’t be horrible if they get pushed off to the following week. And that helps the mental load because you don’t feel like everything has to happen right then and there. And so that’s one example of why I think that’s such a powerful tool, but maybe can you share some more examples from others that you’ve helped apply some of those strategies and how you help them work through their daily symptoms and daily challenges?

[(11:50)] Lauren: Sure. So one of the examples I was actually thinking about as you were talking about your work in a lab was, um, a scientist that I worked with who had a very complex job. Um, it required several multi-step activities, right? So like scientific processing, working in a lab. Um, she had to navigate a really large government building, which if anyone’s been in the DC area or seen these labs, it’s multiple steps and multiple pathways. She had to read and process research articles and she had to have a heavy demand of communication, both receiving verbal and written instructions from her colleagues. And that was getting tricky for her. So we used the 4P’s approach and we created some visual checklists that were really easy to read. It was kind of step by step, the techniques she had to do to execute. So she could offload the memory demands. She could just sort of reference the checklist. That was effective. We looked at some reading strategies. She had like a stack of research papers. And we just said like, instead of reading from the first page to the last page, what do you actually need to, you know, get out of these? And how can we get that faster? So she’s avoiding overwork. Um, and then we looked at things like cooling garments and seating options so that she could be safe during tasks of high concentration where she was prone to fatigue and then even maybe, you know, at risk for some falls. We also looked at the job accommodation network, which is a website that’s really wonderful and helpful, um, to sort of start thinking about what reasonable accommodations might look like in the workplace. And I think that’s a really important thing for anyone living with a disability to be able to sustain employment for as long as possible. And we used our therapy time to help her work on, uh, written language so she could write a letter asking things of her employer and even some advocacy phrases. So instead of leading with, you know, this is what’s wrong with me, we were working on this is what helps me function at my best. And that’s a real mindset shift that helped to boost her confidence. Another good example of someone who maybe is no longer working, who is on disability, but still really wants to stay active and cognitively engaged, which we know is wonderful, um, for people living with a brain in general, but definitely with MS is really finding meaningful, purposeful activity that is flexible. So I like to call this strategy low, medium, high. So we sit down and we think about all the life-valued activities. It could be, um, you know, gardening, pet care, skin care, um social connection, things that we know are really important. And we think about sort of this energy conservation approach, which is to say, what’s a low version? What’s a medium version? What’s a high version? A low version is easy. It can happen in five minutes. It doesn’t take a lot of prep or planning. It’s something you can do when you’re really sort of at your kind of lowest. Um, so for example, a client of mine who is no longer working but really enjoys gardening, when she’s feeling great at her high level, she has a cognitive strategy that allows her to get to the garden center and shop and not completely exhaust herself, but get what she needs to get. Again, wipe. by prioritizing. And then her low version is like sitting on her sofa and just looking out at her garden or going outside and watering a couple of plants so that she always has a way to um engage with activities that really bring her joy.

[(15:14)] Stephanie: I love all of those examples. And I love that your emphasis on needing support and needing to adjust day to day doesn’t mean you’re giving up or giving in. It’s just letting you continue to do the things that matter to you. And I think work is a very common concern for people with MS. So thank you for calling out AskJan.org. Another thing we will put in the description of the podcast, because all of those resources are really critical and I’m not sure everybody knows about them.

[(15:45)] Lauren: Mm-hmm.

[(15:47)] Stephanie: So we’ve talked about being proactive and setting up strategies for your day-to-day life. Um, but what if you were having a relapse or sudden worsening symptoms? How can you reach out for some extra help?

[(15:57)] Lauren: Yeah, it’s so interesting to me. So like most of my career, I was in hospitals and I only interacted with people who had MS who were in an exacerbation that required a hospital stay that was really sort of like, you know, kind of the worst of their days. And I really had no sense of what it was like to work with people in the community. So part of this helping people through relapses, I’m hoping we can get the message out to say it’s good to set up strategies ahead of time. Uh, and to be able to have some of those strategies ready so that when you are in a situation, um, like you have to go to the hospital or you’re spending a lot of time in sort of the medical space that you sort of know how to advocate for your needs. Um, I will say speech pathologists can be found all over the place. So I’m in the community now, but you can find them in acute care, in patient rehab, in the outpatients, clinics. So just know that they’re available, um, and they may not always be offered, right? If you sort of see maybe you’re coming in, you’ve got more physical impairments or let’s say like activities of daily living, you know, the PT and the OT are gonna be happy to see you. But if you’ve been sort of noticing some cognitive decline or change, it’s okay to ask for an evaluation with a speech therapist or to maybe get some resources. Um, I also think, and this is one thing that CanDo does such a great job with, is really making sure your care partners have their resources. So I think that those times where we might have to shift the burden of home or household care to our care partners that they kind of know how things work. And again, that takes a bit of a proactive approach. But I think sometimes the care partners can get some strategies or education, or they can go to advocate to make sure that the SLP is part of the team. I think the problem solving of how to get through that relapse and how to get back to meaningful activity or kind of routines that happened before. We just need all the helpers, right? So speech pathologist, um, is really useful. And I think that as cognition, you know, changes with different medical events, we always want to make sure that we have some strategies ready to go and everybody knows how to put them into place.

[(18:01)] Stephanie: Yeah. I think if everybody knew what you offered, they’d all be demanding consult. [laughter]. So overall, I cognitive symptoms can be some of the hardest to talk about. Why do you think people can be hesitant? to bring them up?

[(18:17)] Lauren: I think they’re scary. Um, I think a lot of people, um, you know, people know about cognitive changes associated with dementia, let’s say. And so I think there’s a real fear that this is progressive and this is going to get worse and I’m going to have dementia, which we want to reiterate is not the case that cognition can fluctuate. Um, it is something that can vary throughout the disease process. Um, I also think there’s a sense of your cognition, what you remember, what you’re able to do and to say, that’s very much our sense of identity. And so I think there’s embarrassment or there’s shame that can be associated when things feel like they are not reliable. If you tell me that, you know, I might not be able to drive my car, that means I can’t take my kids places. That means I lose my independence. So there’s a lot of things that can feel really scary about cognitive symptoms. Um, you know, cognition is typically what you need to be highly independent at work or in the community. So I think that there’s, that’s why I like that model of cognitive communication competence, um, because it does address the emotions related to cognitive changes. ah But I think it’s really important that people hear that A, this is very normal in this community, and we also can do better when we know what’s going on. So that internal experience of forgetfulness or difficulty with organization or planning or problem solving, if you can just speak up to a safe space, there’s strategies that are available. There’s some support and resources you can line up. So it’s important not to let that be the obstacle that prevents you from getting the care that you need.

[(19:53)] Stephanie: Yeah, thank you so much. I think I know that’s still one of my top concerns and so many people that I connect with who are newly diagnosed. I have one close friend in particular who used to call me every time she forgot something but she’s a single mother, uh, a business owner, she’s a busy life, balances a lot of stress and fatigue. So again, going back to that framework that you described of saying, like, it’s not always a sign that you’re cognitively slipping, but it’s a sign that all of these things are interconnected and understanding that and managing it really makes a huge difference.

[(20:31)] Lauren: Yeah, I think there’s also so much that can affect our cognition that we can do something about. Um, so stress, sleep, right? Hydration, nutrition, exercise. You know, there’s a lot that can benefit your cognition. And so if you can sort of figure out, well, you know, I’m really forgetful or I’m really foggy. Um, maybe it’s a chance to say instead of just suffering with that or being really worried about that, what we can say is let’s take a like a problem-solving approach here and figure out what, what do we have control over? Right? If there’s a sleep issue, let’s get to that. Because we know the brain is really, really dependent upon good quality sleep. If there’s stress, which of course having MS can be very stressful, there’s resources for that too. Right? So it’s really important to understand the connectedness. Um, and also what helps your brain to function better? You know, sometimes getting in with a support group or chatting with some friends, like you’re saying, can go so far to kind of, you know, take away some of that stress to make you feel seen and validated so that that’s not sort of an internal distraction that’s impairing your cognitive abilities. You can say, well, this is my space where I can vent or laugh. Um, and it does help. So it’s important to have that big picture approach, I think.

[(21:48)] Stephanie: Yeah, I totally agree. And before we wrap up, I want to circle back to something that’s really important, which is access. And I understand you offer virtual therapy, which is absolutely amazing. But how can somebody find an SLP who understands MS?

[(22:04] Lauren: Excellent question. Yes, I do virtual therapy, which is so awesome because, um, I’m in the DC area. So I have licenses in Maryland, Virginia, and DC. So it’s a really nice way to be able to access ah care for many people, especially in more rural areas. Or as we know, it’s just hard to get to a clinic. So, uh, it’s important that people recognize that there’s speech pathologists with all different um preferences and priorities and talents and specialties. So really seeking out someone who’s in the neuro rehab space is useful. Um, there’s uh the American Speech Language Hearing Association has a really great website called ASHA ProFind. And you can just plug in what you’re looking for and filter, out, you know. out your location and the age that you’re looking for and connect you with a specialist. Typically, hospitals that offer outpatient rehab services. So where there’s PT, OT, and speech, therapists there typically are very familiar with cognition. Um, so that’s a nice place to start looking. I’m an independent private practice owner, and there’s a lot of us out there. So you have to kind of take a look and find us, but it’s not that hard to do. Um, I will also say I cannot say enough about CanDo MS in terms of being an organization that really connects people with the resources and support. So sometimes even just networking or reaching out to other MS online organizations, typically have find a provider. Um, so you can go ahead and look. ah I will also say this is a great advocacy and education point for your neurologist or your primary care doctor. They may know speech pathologists, but they may not know that speech pathologists can be helpful for folks with MS. So sometimes we go to the doctor’s office and we say, I’m noticing this symptom. Who can you send me to? And let’s put them to work. to help connect you with the right resource. And as we have said, you do not need to wait till things are really falling apart. Sometimes connecting early and taking that proactive approach just to know, oh, hey, this is someone who’s on my care team. I might not need them all the time, but maybe we meet and we touch base and I get a couple tools. And then I can reach back out if I need them again.

[(24:15)] Stephanie: Yeah. And I love what you said about asking explicitly for a referral because that Visit is packed and usually it’s medication focused, symptom management focused. And sometimes, you know, we as providers remember to send you out the door with your prescription, but not necessarily all those referrals. So even just at the end of the visit, say, Hey, by the way, remind me who I can go to for X, Y, or Z. And I think that’s really, really smart tip. So thank you for this great overview. It’s really nice to know that no matter where you are, in MS, that there are things you can do, that you’re never alone, that there are wonderful professionals like yourself that can help you and give you tools. And I know I learned a lot today. I hope our listeners did too. And just really want to thank you for being here.

[(25:03)] Lauren: Thank you so much. I really value your perspectives. And it’s always good to shine a light on the helpers that we can all tap into to make our experiences the best they can be.

[(25:14)] Stephanie: Thank you. 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 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.

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