Addressing Swallowing Difficulties and Nutritional Deficiencies in MS

Addressing Swallowing Difficulties and Nutritional Deficiencies in MS

Episode 190 – Podcast Transcript

[(0:24)] 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 talking about something that doesn’t always get enough attention, but can make a big impact on daily life, swallowing difficulties and nutritional challenges in MS. To help us dive into this important topic, I’m joined by two incredible clinicians from UT Austin, Dr. Corinne Jones, a speech language pathologist and researcher, and Carla Cos registered dietician. Hi, Carla. Hi, Corinne. Thank you so much for being here today.

[(0:56)] Corinne Jones: It’s great to be here.

[(0:57)] Carla Cos: Thank you so much for having us.

[(0:59)] Stephanie: Yeah, let’s dive right in. And Corinne, I’d like to start with you. Can you help us understand what kinds of swallowing difficulties people with MS might experience?

[(1:08)] Corinne: Yeah, so it can be quite varied. So swallowing encompasses, you know, anything, uh, the act of getting food and liquid into our bodies. And, um, there’s kinda a- a dumb joke here is that swallowing starts with dinner reservations. So, you know, even the ability to understand that you’re feeling hungry or, you know, see that you have food on your plate can- can, uh, impact our ability to get food and liquid into our system. Um, so thinking of kind of the mechanical issues or the- the neural issues that might happen, um, you know, things could happen in the mouth, so, you know, it might be harder to chew, uh, certain foods or things might spill out of the mouth to the front or back into the throat to the back. Um, people may have thinking more issues in the throat would be food and liquid leftover, needing to kind of swallow multiple times to get things down. Uh, liquid mostly, but food can also sometimes go down the wrong pipe. This happens for everyone, but, um, in people with a- a swallowing disorder, that might happen more and more frequently. Um, and then in the esophagus, things can take a long time to go down to the stomach or we could have reflux, so things coming back up from the stomach. And so, you know, from anywhere in there, uh, people with MS typically, uh, tend to have more difficulty with the solid foods, things getting stuck. Um, though also sometimes with liquids, um, things going down the wrong way. People also have a… can have a difficulty starting a swallow, so they have food or liquid in the mouth and just kind of getting everything started can be difficult.

[(2:53)] Stephanie: Yes. I’m so glad you explained all of that ’cause I don’t think I ever appreciated how complicated swallowing was until I had MS and I’ve had moments where I’m chewing my food and I just can’t get the muscles to fire, to cooperate, and sometimes I just have to like spit whatever I’m eating out and start over if… does that make sense? Is that hesitation common?

[(3:15)] Corinne: Yeah, it’s actually quite common. Um, and we don’t know exactly what’s happening in the brain that would cause that, but um, it’s just kind of that disruption in those signals getting out to the muscles. So similarly, we might have that in- in our other muscle movements and, you know, swallowing in- includes a lot of different muscles and so it’s- it’s slightly different, but it’s- it’s fairly common, uh, and similar to the other mo- movements that we have. Um, certainly these things can be worse on, uh, some days or other days. They could be worse in the mornings or the evenings. Uh, certainly impacted by fatigue, other illnesses going on, stress, um, or even heat, sometimes.

[(3:56)] Stephanie: Yeah, it’s definitely one of those rare symptoms that nobody really ever told me about, uh, but took me by surprise. And now Carla, let’s talk about how this could affect nutrition. What are you seeing in your practice?

[(4:08)] Carla: So this definitely affects nutrition in a lot of ways. So if people are having a hard time swallowing a food, they may start avoiding certain textures altogether. If they’ve had an issue in the past where they choked on something, so commonly people might have issues with like animal protein or just drier types of foods like bread or like crackers, for example. And, um, over time, this can lead to someone not getting, you know, enough protein or they’re not gonna get enough fiber. It can lead to vitamin deficiencies if they’re really only eating a few safe foods and not really, you know, expanding beyond that. And um, you know, fatigue can also influence swallowing ability. Um, but also it, uh, plays a huge role in food choices. So it can limit variety and, you know, how much someone can cook meals at home because if you’re tired, that’s kind of the last thing you wanna do. So the default might become eating out more and using processed foods which aren’t gonna help the fatigue and overall MS symptoms as well.

[(5:13)] Stephanie: Yeah, it’s definitely a vicious cycle, uh, but it’s not people just with severe dysphasia, severe problems swallowing, even smaller changes can affect somebody, right?

[(5:25)] Carla: Correct. Yeah. Severe dysphasia, of course, you know, has a greater impact on someone’s nutrition status, but absolutely, even subtle swallowing issues can cause a lot of dietary restriction if a certain food has caused trouble in the past and people may not even realize how their food choices or changing, or even how the amount of food that they’re having is shifting, um, because it is really common for people to eat less when they have swallowing issues because it just takes so much more time and effort to, you know, pay attention to how they’re chewing food and practicing safe swallowing strategies that people just end up eating less. Um, so it’s important to catch that early on and adapt their food choices to make sure they’re preventing deficiencies down the road, um, and that’s when it’s a good time to reach out to your provider so they can talk about strategies, uh, just to bridge that gap a little bit better.

[(6:22)] Stephanie: Yeah, absolutely. Now let’s go into what people can do about the… this problem. So Corinne, how do you help someone with MS modify how they eat safely without totally overhauling everything about what they’re doing?

[(6:36)] Corinne: Absolutely, yeah. So, um, just as a- as an overview, the speech language pathologist kind of cover swallowing from the lips to the top of the esophagus and then a GI specialist will cover from the esophagus- esophagus kind of on down. Um, but sometimes symptoms people have, it’s unclear where the issue is- is going. And so we usually start with kind of a conversation about how eating and drinking is going. And then really it’s best practice to take a look at the swallow just because all of the muscles are kind of deep in the throat and so it’s kind of hard to see what’s going on just sitting across the table from someone. And so, uh, we can do it in a couple different ways. Kind of our bread and butter way is to do an X-ray video of swallowing. That way we can see the muscles and the structures in the mouth and the throat and the esophagus. And during that, uh, exam people will, uh, swallow material that has contrast in it so we can see where that goes, where it shouldn’t go, if it doesn’t all- all go down as we are expecting it to. There’s another type of assessment, it’s called endoscopy, so that’s a- a tube up the nose and then we kind of watch the swallow from above. We can’t see into the esophagus during that, uh, assessment. And then there is a separate endoscopy, a procedure named endoscopy that looks at the esophagus, but that just looks at the structure and you’re asleep for that, so the camera will go further down. Um, and this is very individualized and so it’s hard to say, like give blanket recommendations just because like, you know, individual symptoms of MS are very personalized. So as difficulties with swallowing, um, one thing that we aim for, for patients with difficulty swallowing is called the least restrictive diet. So that means we want people to eat and drink foods and liquids that are as close to normal or what is to be expected as possible.

Yeah, it might be safest and easiest to, you know, put everything in a blender or, you know, to thicken your coffee and so you can essentially, you know, only have to drink it through a spoon, but that’s not enjoyable for everyone. And you know, if again, as Carla was saying, if it’s not enjoyable, you’re not going to eat as much. And um, so we want to… we don’t wanna modify things unnecessarily. Uh, there are certain strategies that we might also recommend in order to keep that least restrictive diet. So instead of thickening a liquid, we might recommend say that someone tuck their chin. When you tuck your chin, that kind of closes off the airway. Sometimes actually tugging the chin makes us swallow worse. And so, you know, we- we wanna be sure that we see the effects of- of those kinds of strategies. Um, also there are things that we can do some more rehab type exercises. So essentially physical therapy for the mouth and throat that we can do to kind of change the strategy of swallowing or to kind of bulk up the musculature if that is weak.

[(9:40)] Stephanie: Yeah, I think what you said about just the little tips and tricks, often you don’t realize how the simplest thing could really address the symptom until you talk to an expert. And things that speech language pathologist helped me realize was that A, like you both have said, fatigue plays a big role in my swallow, right? So it’s towards the end of the day or if I’m sick or, you know, I- I can tell I’m more fatigued and therefore now makes it more of a priority for me to pay attention to the swallow ’cause that’s where the- the scary times have happened. Um, and then the slight tin… chin tuck to help activate those muscles has really helped because I’ve noticed that if I’m getting that hesitation, it’s usually ’cause my neck is extended or I’m like looking at my phone and- and eating at the same or you know, distracted, right? It’s weird that you have to focus on something that’s so automatic. It’s a bizarre. Yeah, it’s so weird. And then also just smaller bites and making sure you’re drinking between taking bites and all of those things. And really truly one, two visits with a specialist can give you a whole suite of tips. So thank you for highlighting.

[(10:50)] Corinne: Absolutely. And then also Stephanie, I wanted to add, you’re the expert on your swallow. So, you know, I- I only get kind of a snapshot of what’s happening and so, you know, it can be a little demoralizing if you are having this issue, but then you come to see a specialist and then your swallow looks great. Um, and so, you know, it’s important for people to be aware and to kind of be… you know, take notes on- on things, strategies that work and that don’t work and you know, if you, you know, have good insight into things that um, can help or cannot help, um, can be really helpful for, uh, US specialists as well too. Um, and to- to kind of come in with that information will- will help me strategize my exam. ‘Cause these exams are also very personalized and so if someone comes in and says, “I can eat everything in the world except fried chicken,” then I might have them bring in fried chicken when we do the X-ray just so I can get a sense to see how things are going wrong. Um, and then… or- or you could potentially even know, like say if you know that in the late afternoon, that’s when the fatigue sets in and that’s when you are really having those issues, you could think about scheduling you visit at that time where you know you are gonna have some more difficulties.

[(12:15)] Stephanie: Yeah, I think that’s really great advice trying to mimic real world in doctor’s offices because we all felt that frustration of, I swear I’m having trouble, I just can’t show you right in this five minutes that I’m in front of you. Um, so Carla, how do you work with something like that? So somebody who’s afraid of choking or who’s avoiding food groups for out of fear?

[(12:40)] Carla: Sure. So the first thing I would do is just validating how difficult that can be ’cause we have to eat every day, right? We can’t not do that. So it’s scary to kind of face your fears in that way if you had issues in the past with certain foods, um, and then just meeting them where they are because that fear is very real. Um, but kind of working around it. So if there was a certain food that caused issues, then you know, we’ll stay away from those particular ones. But we’ll also think about foods that are safe to swallow and try and include more variety with similar textures. So we can just get, you know, more types of foods in the diet and you’re not having to, um, just use very few foods just to make sure we’re getting, you know, that balanced diet. And also talk about, um, hydration because a dry mouth makes swallowing harder. So just, you know, overall hydration is important, so getting fluids in, water if you need to, you know, flavor it with flavoring drops or doing like a natural fruit infused water, all those things are great. Um, but also just choosing more foods that naturally have liquid in them, like smoothies or soups are great ways to add in more liquid. Um, and then let’s say there is a food that is difficult to swallow, like protein for example, adding, uh, moisture to that food will make it easier to get down. So adding a sauce or like vegetable broth when you’re, you know, microwaving chicken, for example, using dips or salsa, all those things will help get it down, but it’ll also give it more flavor. So it’s a win-win. Um, protein, like I mentioned before is a pretty common food that people have a hard time swallowing. So we would just wanna think of other soft protein options that ideally are just naturally easier to swallow. So, you know, sure, you can puree chicken, but a lot of people aren’t going to enjoy that necessarily. So we can think of other foods that are easy to get down, for example, like scrambled eggs or Greek yogurt, uh, cottage cheese, um, silken tofu or even putting protein powder in smoothies are, you know, good ways to get more protein in there. And then if still at the end of the day nutrient needs aren’t being met, then I would talk about incorporating like an oral nutrition supplement or, you know, liquid vitamins if we still can’t incorporate either enough variety in the diet or enough volume with their swallowing difficulties.

[(15:11)] Stephanie: Thank you so much. Lots of great tips in there. Now that we’ve sort of touched on this already, but the tough thing with MS is that symptoms can be great for a month and then suddenly worse again, and it’s always this moving target. So how can we help people recognize and respond to those changes and with that uncertainty?

[(15:32)] Corinne: Yeah, I think if, again, as I said, you know, being mindful of the things that help or that don’t help, and to have some of that flexibility, um, and you know, it shouldn’t be surprised because MS might be different every day. And so, you know, if you can be a little bit mindful and if you’re waking up and you know, you feel like it might be a- a tougher day and know that, oh, on these tough days I fatigue out really early, then you might do things like eat when you feel like you are… you- you know that you’re gonna be able to get through that whole meal. So you might, you know, preload your calories for that day. Um, don’t be afraid to excuse yourself from any social activities that are around eating and drinking when you know you might have, uh, difficulties or, you know, even just knowing, you know, being physically present while other people are eating, uh, is- is not as uh, a taboo or not as kind of strange as you might feel that it is. And yeah, even, uh, trust your body and to know that you are your expert… you are the expert on you and- and to know what- what you need and- and to advocate for what you need as well.

[(16:43)] Stephanie: Yeah. Thank you for that. Carla.

[(16:46)] Carla: Yeah, those are all great points, Corinne, and I’ll piggyback on something you mentioned. If you notice that you have, you know, more energy at the beginning of the day, then maybe that’s the time where you can tolerate, uh, more solid textures and if later in the day fatigue gets really bad and that might be the time for a super smoothie if you know you’re getting tired towards the end. Um, I’d also think about planning just from like a food prep perspective for high energy days and lower energy days. So on a high energy day, that might be a day where you can kind of get ahead of the game and meal prep or make recipes that freeze well so that on a low energy day, you have something to pull out of the freezer and you don’t have to, you know, stand for 30 minutes to cook a meal. Um, you can also think about splitting up what you prepare. So maybe one day you do the washing and cutting of the produce and the next day you can cook it off and then maybe you can, you know, save dishes for the next day. If you can’t do that all on the same day. Um, you can also on a low energy day, just have some staples on hand that are minimally processed but would be really quick to throw together. So some examples would be rotisserie chicken with some salsa to make that easier to swallow. Um, some low sodium canned beans that you can mash up if you need to. Um, using like frozen brown rice if that’s safe to swallow for you and frozen veggies, for example. Or making like a well-coached pasta, putting some jarred pasta sauce on it and frozen veggies as well. So still healthy, um, but it’s gonna be really quick to put together. Um, again, I’ll bring up hydration because it’s so important, but it’s really essential whenever, um, symptoms are flaring up because um, again, fatigue has such a big impact. Um, if we’re not drinking enough water, we’re probably gonna feel more dire and we’re just gonna increase the risk of having, you know, more bladder complications in terms of like bladder irritation or even UTIs.

[(18:58)] Stephanie: Yeah, thank you. My personal philosophy on cooking is cook once, eat twice and realistically eat three or four times if possible because whenever we sort of have a formula for dinners, right? So we’ll cook one big batch of something, have it for lunch at least one day and have it a second time for dinner that week. Uh, and then that way you’re just minimizing the amount of time, especially at the end of the day when you’re busy, you’re tired. Um, I also on weekends, cook big batches of meatballs and I do like chicken, pork, beef, different types of proteins mixed with different fresh herbs and veggies and have that in the freezer one minute in the microwave. Easy soft protein, easy go-to meal prep, throw it in basically anything and mix and match. Um, that has been a lifesaver.

[(19:47)] Carla: Yeah, I love that. And that makes a lot of sense just to make bigger portions ’cause if you’re already going to take the time to be in the kitchen and stand in front of the stove, at least, you know, get multiple servings out of it. You can even double the recipe if you have the ability for that and you don’t have to cook again for a few days. So I love that.

[(20:07)] Stephanie: Yes, it’s the best gift you can give your future self. Um, so let’s talk about care partners for a second. Um, how can they support a person with MS without taking over?

[(20:19)] Corinne: Yeah, that’s a great question. Um, so sometimes care partners may feel like they wanna jump in and help feed and certainly sometimes people will- will need help getting the food and liquid into their mouth. Um, typically, we want to try to minimize the amount that other people are feeding a- a person with MS or a person… any person. Um, and because like I said, you know, swallowing starts with dinner reservations, we do a lot of mental prep before accepting food and liquid by seeing it on the plate and lifting it up with the utensil or bringing the cup to our mouth and our body is already prepared for that to come in. And so, um, we can actually have better swallowing outcomes if we’re not fed. And there was a study, um, done back in the ’90s, but still it is a great seminal work showing that the need to be fed is act- actually, uh, an independent risk factor for developing aspiration pneumonia. And so, uh, we want to- to keep the- the person with dysphagia involved in- in feeding themselves as much as possible.

If you do, if you are a care partner and you do need to help with feeding, um, I would recommend having someone feed you an entire meal just to get that experience to know kind of what it’s like to be fed and that might give you some insights on- on how to- to better feed in order… in- in that vein of keeping someone independent in their feeding, this is where we can bring in our occupational therapists to help with adaptive utensils. Um, stable eating setups, um, you know, certain types of cups that might be easier to hold or- or to lift up, um, to the mouth. Straws are interesting. Sometimes people have more difficulties with straws. Sometimes people have an easier time with straws and so we don’t have a blanket- blanket recommendation with straws. Um, but just there are a lot of different things that can help that self-feeding easier. Also, we wanna think about our environment, um, when we’re eating. Um, so if we- if we can reduce distractions, so, you know, turn off the TV, try not to have a- a big engaging conversation during meals, which is hard. Um, but just kind of keeping that environment, um, ideal for the person, uh, you’re caring for. Um, Stephanie, you mentioned kind of that higher mental load and that increased concentration that you need, um, to eat with and so that- that will decrease if we have distractions. And so we wanna- we wanna set our- our loved one up for success.

[(23:08)] Stephanie: Yeah. And that really is a family- uh, a family affair, right? Everybody putting their phones down, turning the TV off, spending some good quiet, quality time with each other. It’s not easy and it definitely takes the whole family. Um, Carla, what would you add to that?

[(23:25)] Carla: Yeah. So care partners play such a big role when it comes to like meal prep or even grocery shopping. Things around food take up a lot of energy, even just mental energy, right? Figuring out what you’re gonna cook, um, so they can, you know, be really, really helpful to the person who has MS. So helping with prep can be, uh, really essential, even if it’s just like washing or cutting produce, it makes it so much quicker whenever, you know, someone’s actually doing the putting together and cooking of the meal. Uh, cleanup, no one likes doing dishes, so that would be a big help. Um, or a grocery shopping, helping with meal planning, all of those can be either done by the care partner or just shared as a responsibility. Um, also I would encourage the care partners just asking what kind of help is welcome because everyone has their own version of what helping looks like. So it’s great just to have that conversation to make sure that they’re helping in the best way. Um, another thing to think about if the person who is struggling with swallowing difficulties loves a food but isn’t able to safely swallow it, that the care partner can do their part, um, to not eat that food around the other person ’cause it’s just really challenging, right? To see something you love to eat and know you can’t participate in it. Um, so that can be something to think about. And um, just kind of generally having the care partner validate the person’s experience on how difficult it can be to have, you know, swallowing difficulties, not being able to eat certain foods that they like, it can, you know, take a toll emotionally and socially. Um, so just having someone there that can, you know, understand them and um, they feel like they have, you know, kind of a partner in crime in that sense.

[(25:12)] Stephanie: Yeah, I would also add people in the family. Just knowing the Heimlich maneuver in general can add a lot of peace of mind. So if you’re a care partner and just doing some basic CPR and Heimlich maneuver training would be amazing. I know I’ve had times where I’ve almost needed that [inaudible] doctor and he’s ready, but if you don’t have that, um, I think that would be a- a really easy thing to do as a family and it’s good for everyone, right? If you have kids, if you have somebody you love with MS. And then I like the point that both of you brought up, which is to not take over and not assume that the person needs help with everything, but to check in and ask because that’s definitely a sore point for me. I don’t want anybody taking over anything on my behalf, and so just asking what I need help with is a- a much better way of approaching it. Um, and I think sometimes it’s like my husband and I run into this where I like cooking. It’s a creative outlet, it’s something I enjoy, it’s a hobby. I don’t like doing the dishes I don’t like… well, you know, like it is- it is time and energy consuming. Um, and so I want somebody in the kitchen with me. It’s a bonding experience. We do it together, we tag team, just like you said, share the responsibilities for each thing. Um, but some days, I feel like he can tell I’m very tired and very fatigued and he’s like, “Go sit on the couch, I’m gonna do everything.” And I’m like, “No, I hate that.” I just want you to help. I just want like a second pair of hands. I don’t want somebody to tell me to go sit down and- and uh, not participate. So, uh, I know this has been so helpful. I learned a lot from both of you and I feel like hopefully people are walking- are walking out of this not just with new knowledge, but also just really real life strategies that they can implement at home. So before we go, any final takeaways? Corrine, I’ll ask you first.

[(27:07)] Corinne: Yeah. So, you know, even small changes or what we might perceive as small changes can have big impacts. I mean, you know, Stephanie, you’ve mentioned that even that difficulty getting that swallow started, so you have to, you know, spit out the food and, you know, say that happens when you’re at a restaurant with clients, uh, that can have kind of big impacts, and so…

[(27:29)] Stephanie: Been there.

[(27:30)] Corinne: Yeah. And so, you know, if you are experiencing these things and it is having an impact in your life, there are, you know, different things that we- we can do that you can do and- and work with specialists, um, to address and then they can have big impacts as well. Um, and so yeah, I- I’m always a- a big recommender for early- um, early assessments and even if you, you know, say go and- and do an X-ray swallow study and everything on the X-ray looks fine, that can be really impactful because say 10, 20 years down the line, things change. We have that reference study to know kind of where you were and then we can do that comparison as well.

[(28:14)] Stephanie: Thank you. And Carla?

[(28:16)] Carla: Yeah, so I would say that food spans over so many different aspects of our life, both, you know, nutritionally, but socially. So it can be a lot to take on, but, um, it’s not like you have to change everything overnight. Even, you know, small intentional changes will really make a difference. Um, these things don’t happen, you know, quickly. They take time. So to be patient, um, and you can pick, you know, one thing that you think needs improvement or if you have, you know, let’s say one food that you’re having difficulty swallowing, then um, you can try to find strategies around making that food easier to swallow or just finding a different food that either tastes similar or feels similar, but it’s gonna be safer for you. So just be patient and try to be creative with ways that you can work around some of the limitations that you’re finding.

[(29:11)] Stephanie: Great. Thank you both so much for being here.

[(29:14)] Corinne: Yes, thanks for having us. This was fun.

[(29:16)] Carla: Yes, thank you so much. Appreciate it.

[(29:19)] Stephanie: Thank you for listening to this episode of the Can Do MS Podcast. If you like 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.

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