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MS Living Well: Key Info from Multiple Sclerosis Experts
Handling MS: Word-Finding and Memory Strategies
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- [00:00]
Dr. Marissa Barrera
Foreign.
- [00:07]
Dr. Barry Singer
Greetings and welcome to season eight of the Ms. Living well podcast. Hard to believe we're in our eighth year. I'm your host, Dr. Barry Singer, director of the Ms. Center for Innovations in Care at Missouri Baptist Medical center in St. Louis. Today's episode is Handling Ms. Word Finding and memory strategies. This episode is sponsored by TG Therapeutics. Cognitive changes are a common part of living with Ms. Maybe you've walked into a room and forgotten why, or found yourself searching for a word that just won't come. These moments can be frustrating, but they're also very real and very common. So what's actually happening in the brain? And more importantly, what can be done about it? In this episode, we'll explore both the science and the solutions behind memory and word finding in Ms. You'll hear practical strategies from speech language pathologist Dr. Marissa Barrera to help strengthen memory, improve word finding, and reduce cognitive overload in everyday life. But first, I'd like to introduce Dr. James Umowski. He's a clinical neuropsychologist and associate professor of neurology and at the Icahn School of Medicine at Mount Sinai. With a PhD from Columbia University, his work focuses on cognition in MS, including pioneering research on cognitive reserve and memory dysfunction. I'm really pleased to bring to the podcast Dr. Chymowski. Let's talk cognition.
- [01:40]
Dr. James Sumowski
Thank you for having me. This is an important topic to me, Jim.
- [01:43]
Dr. Barry Singer
Many people with Ms. And their families notice that their short term memory isn't what it used to be. Is that a real and common issue with people living with ms?
- [01:52]
Dr. James Sumowski
Yes. Lots of times patients and their family members come in and they talk about memory lapses. But oftentimes it has more to do with forgetting where they were in a conversation or why they went into a room. Less common is forgetting what they did last week or forgetting someone's birthday or those kinds of things. Those are not the short term memory issues that patients often report.
- [02:15]
Dr. Barry Singer
So what are we actually talking about? There's different types of memory, correct?
- [02:19]
Dr. James Sumowski
Yeah.
- [02:19]
Dr. Barry Singer
Can you kind of explain it to us?
- [02:20]
Dr. James Sumowski
Sure, absolutely. There are many different kinds of memory. So for instance, there's the memories that you have from childhood. That's something that's never affected in Ms. That always stays. And then there's also memory, like your knowledge that you have of the world. They call it semantic memory. So remembering vocabulary, remembering who the first President of the United States is the. That's another thing that's completely unaffected by multiple sclerosis. But the type of memory that is is something called working Memory. Working memory is the ability to hold information in your mind while you're actively working on a task. This is a very important issue for the field because there's an aspect of working memory that people really haven't investigated in Ms. When we give people with Ms. Tasks and ask them, oh, here's a string of numbers. Repeat them back to me. Now say them backwards. Now reorganize. People with Ms. Do really well at that. They don't have an issue at all. But there's one aspect of working memory that the field hasn't been paying attention to, and it's called working memory maintenance. And what that means is having information available to you after you take your attention away from it. And so this is why we hear very often patients saying that they walk into a room and forget why they went in there.
- [03:36]
Dr. Barry Singer
So, yeah, you can get distracted and lose whatever you were thinking about.
- [03:40]
Dr. James Sumowski
Yes, exactly. But the thing is that if someone without Ms. Gets distracted, the information is still in the background somewhere. What happens in Ms. Is it seems to be difficult for people to reactivate. I'll give you an example what patients tell us a lot. They say that they lose their train of thought in conversation. And so they're having a conversation with someone and they think of something they want to add to the conversation, but they don't want to interrupt. So they wait for the other person to stop speaking. Then their thought is gone, right? Yeah. And some patients have told me that they started interrupting because they know that it's going to be gone if they wait for the other person to finish.
- [04:16]
Dr. Barry Singer
What's going on in the brain that makes this happen?
- [04:18]
Dr. James Sumowski
I think this is a very interesting question that we're actively investigating, because you see a lot of literature looking at lesions in the brain and also gray matter in the brain, and looking at MRIs and seeing whether there's atrophy or brain shrinking. And I think a lot of times those are easy things to look at and then draw correlations, but in fact, they may not be the causative factor. I think one thing that people with Ms. Reported a lot in the past was brain fog. And I think brain fog is essentially this feeling of losing information as soon as you take your attention away from it. And I think we learned from COVID that brain fog could be quite an inflammatory symptom that people with brain fog, after Covid, the best explanation was that there was this residual inflammation in their brain that was disrupting circuits or preventing the synaptic changes that are required to make a lasting memory or have it hold in the background. And these are things that we're currently trying to investigate because, one, they're potentially modifiable, and that would be better than looking at lesions that already exist. But two, I don't feel like the explanations that exist in the literature, like correlating something with the thalamus or correlating something with the whole brain, are giving us a good theoretical reason for why these working memory issues are occurring.
- [05:42]
Dr. Barry Singer
Right, so you think it may be due to ongoing neuroinflammation just in general in the brain and not like a specific structural area we know, like deep in the brain, there's this area called the hippocampus. And so people with Alzheimer's have a lot of injury to the structure deep in the brain. But with ms, that can be affected, but not nearly like it is in some of these other conditions.
- [06:05]
Dr. James Sumowski
And with the hippocampus, there's work that's been done by Bruce Trapp's lab and others looking at post mortem samples. And the interesting thing that they found was that there was demyelination there, but there wasn't a lot of neuronal loss. And so I think maybe that was a bit surprising. People with Ms. Are keeping their neurons definitely much better than persons with a condition like Alzheimer's disease.
- [06:33]
Dr. Barry Singer
So this comes up a lot. Patients come in, maybe they're in their 60s, living with MS, and they got memory problems. And how do you know it's just not normal aging? How do you know you got early onset Alzheimer's? Or could it just be medication?
- [06:49]
Dr. James Sumowski
So, I mean, it is a major issue that comes up now that drugs have been approved for conditions like Alzheimer's disease. It's more important to get it right in case there is a treatment. And so my colleague here at Mount Sinai, Sarah Levy, is doing a pilot study on this, using amyloid PET to try to investigate is there a different pattern of memory or cognition in people with Ms. Who also have Alzheimer's pathology?
- [07:14]
Dr. Barry Singer
Amyloid is a protein that accumulates in the brain. People with ms, and a PET scan lets us see that. So you can do a PET scan and you can tell who's got Alzheimer's and who doesn't.
- [07:25]
Dr. James Sumowski
We'll take a step back for a second, tell you about our own experience here in the clinic. So we have a neuropsych clinic that we started in 2018. You know, we've seen well over a thousand patients, and the idea is that we want everyone to be seen for a brief screener. And we see people in their teens, up to their 80s and 90s. And one thing we've noticed is we never see anyone with a pattern that looks like Alzheimer's disease. And then a study came out of wash University in St. Louis last year suggesting that Ms. May be protective against Alzheimer's disease. And I was like, whoa, this is exciting. For the first time, there's like a positive, a silver lining here. And their rationale? Well, they did look at this beta amyloid with PET in the brains of people with ms, and they looked at other markers and, and what they found was that people with Ms. Had less of it than persons without Ms. And the explanation was maybe this inflammation in the brain, this microglia, these cells that clear away debris, maybe they're acting to clear away the beta amyloid. And actually the drugs that have been approved for Alzheimer's sort of work in the same way to clear it away. And so we've looked at differences in the cognitive profile of people with, with Ms. Who have memory issues and people who have Alzheimer's disease or something like it and have memory issues. And what we find is that both groups may have great difficulty remembering a short list of words. But the difference in Ms. Is patients are always oriented. They always know what day it is. They always know where they are. They always remember things about their day and where they are in the world, which is really super important, obviously, for living your life. But in Alzheimer's, the key difference is they start to lose that.
- [09:11]
Dr. Barry Singer
And we also know, like, medication can sometimes play a role. We got plenty of medications that can cause cognitive problems and particularly like a medication called Topamax Topiramate, they can cause word finding problems, short term memory problems. It's used for all kinds of things from migraines to seizures. So many of our meds can cause some of that cognitive stuff. So we have to pay attention to
- [09:32]
Dr. James Sumowski
that as well, especially since, you know, they're potentially reversible. Right. And then perhaps some improving memory if something could be tweaked, changed in some way.
- [09:41]
Dr. Barry Singer
Yeah. And the other big ones are B12 deficiency and low thyroid. So we definitely want to check that. And I've found that plenty of patients over the years, particularly B12 deficiency, which can cause tingling, numbness, fatigue, and memory problems, which.
- [09:53]
Dr. James Sumowski
There you have it.
- [09:54]
Dr. Barry Singer
Yes, a lot of overlap with ms, so you don't want to miss that. Let's dive into the topic of word finding problems. So I hear this a lot from my patients, including some today. And, you know, it could be really frustrating or frankly, embarrassing. That's what some of my patients report. And so how common is this in ms?
- [10:15]
Dr. James Sumowski
This is by far the most common thing that we hear from our patients with Ms. From the very beginning of the disease, or at least from diagnosis. And so in preparation for today, I was looking back at some of our data from a paper we just published, and it's 35% of our patients said that they often or very often are having these word finding problems, but it's only 12% of people without Ms. The good news is we find that it doesn't seem to get worse. It's extremely frustrating. Obviously, our patients tell us who are young and they're starting a career, they're about to give a talk in front of their colleagues or a boardroom, and they're very nervous about the idea that they may not come up with a word. One thing that we try to counsel our patients is that oftentimes when you're pause to think of the word for you, it seems like an eternity. And in fact, it may not actually be that long for everyone else. And I'm not saying this to invalidate or diminish the issue, but I am saying that a good thing to remember is that most people are thinking about themselves and are in their own thoughts and not scrutinizing every pause, every sort of flinch that's happening. And so oftentimes you could pause for a second, look thoughtful, and then hopefully can find another word to carry on.
- [11:35]
Dr. Barry Singer
Let's move on and talk about executive function. What does this actually mean and how does it impact someone's real life? Living with ms?
- [11:43]
Dr. James Sumowski
The term comes from the idea that your frontal lobe mostly, but other parts are sort of orchestrating and directing the rest of your brain. And so the idea is that you have control over your thoughts and you can plan things out and you can organize things. And so when people have executive function difficulties, these are the troubles that they have. Interestingly, in our new evidence that we published in Brain, we found that when we give people with Ms. Executive function tasks, people with a relapsing or emitting Ms. Do totally fine, completely normal. And it's only people with progressive disease that have difficulty on planning tasks or, or controlling their attention. And this might be surprising because sometimes people with relapsing disease do report executive dysfunction. But we even looked at that asking in a questionnaire, and people with relapsing disease reported executive dysfunction much less than people with progressive disease. And so what we think is happening is in relapsing or remitting disease, executive dysfunction is mostly related to depression. And what we're finding is that when people with relapsing disease say that they're having executive functioning deficits, it's really about drumming up the drive to push themselves toward getting things done or another aspect of it. What happens in even mild depression is you have less control over your own thoughts. This is hugely important because that means that for many cases, when in relapsing disease, when people report executive dysfunction, it's potentially treatable in the idea that you treat the depression, you treat the anxiety, and actually people do improve. It's different in secondary progressive disease or primary progressive disease, where there does seem to be greater difficulty even doing it in a room or quiet room with
- [13:39]
Dr. Barry Singer
us, when we look at progressive patients, there's more gray matter involvement.
- [13:43]
Dr. James Sumowski
Yes.
- [13:44]
Dr. Barry Singer
So do you think that's playing a role?
- [13:45]
Dr. James Sumowski
I definitely think that is the key factor. One question is, lots of times people talk about cortical atrophy and on an MRI what that looks like is gray matter. But I think that in relapsing or remitting disease, almost all the cortical thinning or changes can be explained by demyelination, not by actual neuronal loss. But I think what happens in progressive disease is then you do have neuronal losses and that is what leads to this executive dysfunction.
- [14:17]
Dr. Barry Singer
So what is actual formal neuropsychological testing and when should someone with Ms. Be referred?
- [14:25]
Dr. James Sumowski
So formal neuropsychological testing is when you come in and you come to the clinic and a psychologist gives you tasks where I say, here, solve this complex problem. And so usually people come in and here we do it pretty quickly. It takes about an hour.
- [14:39]
Dr. Barry Singer
Typically, I've seen it's about four hours of testing.
- [14:42]
Dr. James Sumowski
Exactly. So what we do is we try to get a screening on everyone. And frankly, if we know what to look for, it really doesn't have to last four hours.
- [14:53]
Dr. Barry Singer
When we do the neural psych testing, frequently, there's people really struggling. They're in a job, maybe they have to take a new test to get a promotion or even maintain their job, or they're really struggling with retaining information from meetings. So maybe, definitely we see formal neuropsychological testing important if you're going to pull the trigger and think you need to go on short term and then maybe long term disability to document the cognitive impairment that's going on.
- [15:20]
Dr. James Sumowski
Yes, definitely. That is one of the most helpful reasons for doing it and the real life issues for doing it. The reason we're trying to get quick screenings on all of our patients, not just people who are reporting issues, is so down the road. If you notice that you have changes, then we can make a comparison to your previous performance.
- [15:38]
Dr. Barry Singer
Your recent brain paper suggests that the processing speed may not be the main issue anymore in modern Ms. Care. So what has changed?
- [15:46]
Dr. James Sumowski
I think there are a few things. This is a multifaceted answer and question. One thing is Ms. Of today is not the same Ms. Of 30, 40 years ago in multiple ways. Number one, a lot of the literature that mentioned processing speed is from 30 years ago or 35 years ago, when there were no therapies for multiple sclerosis. So everyone that had Ms. Had a disease that was untreated. And so there are many, many lesions that were taking up a lot more of the brain. And if you have that many, then it makes sense that there would be a slowing that seems to affect multiple functions. But we don't see that anymore with our patients. I'll go on and say that the other issue that changed is diagnosis. Our diagnostic criteria are way more sensitive than they used to be, so that now we can identify mild cases that were missed in the past. So 30, 40 years ago, they only identified the worst possible cases, and those were the ones that had these processing speed issues. One major contributor to slowed speed in the past was residual inflammation in the brain after having a relapse.
- [16:57]
Dr. Barry Singer
You know, actually I've been using the iPad based processing speed test routinely in clinics since 2019. A medical assistant gives it to the patient and I walk in and I can see how they do compared to their peers and with the raw score and kind of followed over time. So kind of just opens the door to the conversation about how they're doing with cognition, especially if we see a change over time. So more of a screener. Do you see tools like this fitting into the future of cognitive monitoring? Is there going be to be a way that we can do this in real time with patients?
- [17:26]
Dr. James Sumowski
I think one of the major considerations is that if it happens that Ms. Is affecting motor coordination, and we know that it does, then that can actually make their cognition look worse because you have to respond with your hands. So I'm not saying that this is a fatal flaw. I think people who make these apps or assessments should consider a control task where people are tapping in a certain way or something that they can subtract out so that you can isolate the cognitive part of it.
- [17:58]
Dr. Barry Singer
We also see that with vision, right?
- [17:59]
Dr. James Sumowski
Yes.
- [17:59]
Dr. Barry Singer
So I have patients with shaky vision or blurred vision. They have trouble seeing the iPad to match the Symbols to the digits. So yeah, we have to look at that. I think a lot of times people focus on weakness and numbness and balance and don't realize how important cognition is.
- [18:16]
Dr. James Sumowski
Absolutely. I will say that more and more people aren't changing over time, which is amazing. I think. We also have this early cohort study called Radium's Reserve Against Disability in Early Ms. And what we found is that the biggest factor that relates to cognitive issues is what people came in with like they were early diagnosed. And if you had an issue when you got diagnosed before you went on therapy, you still have that issue. But things haven't been getting worse for people. We're looking at data now for eight year follow ups from people that were seen within five years of their diagnosis and we're not seeing any changes in cognition at all, which is amazing.
- [18:55]
Dr. Barry Singer
Yep, that's really the goal, right?
- [18:56]
Dr. James Sumowski
That is the goal and it looks like it's working. The only caveat to that I will say is if someone develops progressive disease, then that will often, not always could affect cognition.
- [19:09]
Dr. Barry Singer
Well, hopefully we're going to make some progress on progressive disease. Yes, I know. We've covered that in other podcasts. BTK inhibitors are still moving through the pipelines and hopefully we'll have some way to help slow down cognitive impairment for our patients with progressive disease. Well, Dr. Sumansky, thank you so much for being on the Ms. Living well podcast and sharing all your insights on cognition and memory, word finding ability and people with Ms. And I appreciate all your work in the field.
- [19:36]
Dr. James Sumowski
Thank you so much. Thanks for having me. And thanks for all you're doing to get the word out on these important topics.
- [19:49]
Dr. Barry Singer
Joining ME Next is Dr. Marissa Barrera, a medical speech language pathologist and multiple sclerosis certified specialist with expertise in cognition and communication at Ms. She is Assistant Dean of Health Sciences at the Katz School of Science and Health at Yeshiva University in New York and focuses on practical strategies to improve improve memory and word finding. Dr. Barrera, welcome to the Ms. Living well podcast.
- [20:14]
Dr. Marissa Barrera
Thank you. I'm so excited to be here today and talk about Ms. And cognition.
- [20:19]
Dr. Barry Singer
We're thrilled to have you. So let's start with memory. So someone living with Ms. Says, my short term memory is terrible. What are some simple effective strategies you teach?
- [20:31]
Dr. Marissa Barrera
I think it's important for us to remember that working memory is very much like your own mental sticky pad. Right. When we write a note, we have a sticky pad and we keep the around to serve as external reminders. That's completely normal. But with ms, we See that the stickiness of that sticky note seems to be less effective of holding on. So in that moment, some of the most effective things you can do to hold on to information is to be active instead of passive. So I often recommend to my patients, let's make physical things to make the information more salient. So repeating it out loud, saying it again, that actually activates two different types of pathways in the brain, both motor and then receptive language or processing. This helps strengthen retention. So these are just a very simple thing, just repeating it out loud, saying it to yourself, writing it. Anything you can do to increase salience is going to improve encoding and make that stickiness a lot stickier for future use.
- [21:31]
Dr. Barry Singer
Yeah, that's really important. Many of my patients struggle with memory at work. Instead of engaging in sidebar conversations with your boss, ask for an email instead. AI meeting notes can also help. It's a great way to have notes to go back to reference later.
- [21:45]
Dr. Marissa Barrera
There's no reason for any one of us in our adult lives to solely rely on memory. In the busy worlds that we live in, it's not necessary. We should be supporting memory in real time with real things that make things concrete. That's really the key to success.
- [22:00]
Dr. Barry Singer
Excellent. So are there other ways that you can structure your environment or daily routine reduces memory lapses or deal with memory lapses?
- [22:09]
Dr. Marissa Barrera
Yes, yes. When we reduce the chaos in our environment, it reduces the chaos in our mind. So do not rely on memory alone. Use external systems to support the whole system. So simple strategies make all the big difference. Work smarter, not harder.
- [22:28]
Dr. Barry Singer
Okay, well, let's break this down. Let's get practical. All right, so you're a busy mom, you got three kids working part time or full time. How do you change that routine? Life is kind of chaotic, so how do you simplify it?
- [22:45]
Dr. Marissa Barrera
Routine is everything. So having a routine is very important. And this takes a little bit of pre planning. And this is where you can consult with any individual in your Ms. Care team. But definitely speech, language pathology, occupational therapy, neuropsychology, and other professionals working within the world of cognition and organization can help you think about what are the two or three major routines in your life. And let's work together to build in that predictability, which leads to stability and the reduction of chaos. So that routine is important. So as a mom, it could be, what are the 10 steps that we're going to utilize to get myself and my kids out the door in the morning? There could be physical notes that appear within the house. There's something called tags which are these little electronic pods that you can tap your phone against. And it actually automates a routine. It could start your car, it could start the coffee machine. There's lots of things that we can do to work together, both low tech and high tech, to make routine easy and predictable, which makes the chaos so so much less and improves your efficiency.
- [23:49]
Dr. Barry Singer
Yeah, that's really great. I think also workplace accommodations can really help. Let's say you're in a cubicle right in the middle of entire busy office. A workplace accommodation letter could request moving your workspace to a corner where there's less distractions.
- [24:04]
Dr. Marissa Barrera
Absolutely. I have the privilege of doing this all the time. There are important accommodations that protect our patients and our loved ones under federal regulations. So do not be afraid to advocate for yourself to speak to your employer and those within the HR system to say, I need an environment that permits X, Y and Z. Here's the documentation. This is a keyword, is a reasonable accommodation. Right. This could be increased bathroom breaks. This could be screen readers. There could be breaks for fatigue management. I mean, there are countless, often free, if not low cost ways that we can modify the workplace to have our loved ones with Ms. Working longer, which we know is better not only for our patients, but for the entire system of productivity in general.
- [24:54]
Dr. Barry Singer
Yeah, that's awesome. That's really good advice. So let's turn to word finding problems. This comes up every single day in my clinic when someone knows a word but they just can't get it out. So what are your go to strategies in that moment?
- [25:10]
Dr. Marissa Barrera
Absolutely. So let's give that a phenomenon, if you will, a proper name. And we call this anomia, which is the inability to access words efficiently. In my own doctoral research, we saw about 47% of Ms. Patients. Nearly 1 in 2 patients had changes in their ability to access word anomia. And it's super frustrating, but it's something that can be treated through targeted rehabilitation. The most important thing, the easiest thing I can do, is to not force it. The moment we get stressed out and frustrated, which is completely understandable. That makes the brain work harder. So the number one thing you can do is take a moment, don't force it. And something called circumlocute. That word circumlocute means to talk around. Some people do this naturally, others need to be taught. But say the word that you're trying to come up with is keys. Right. You're running out the door, you're that busy mom with ms, you're trying to say, where are my keys? Before you get frustrated, think about all of the characteristics of the keys. Out loud. You could say, okay, those things, I need to get the car started. They're metal. They're typically near my purse. All right, there's two or three of them. Oh, come on. They make that beep, beep, beep, beep sound. I'm describing those characteristics. I'm getting closer through the description of what it is, how it is, how it feels, how if it smells, how it tastes, if applicable. That helps give your brain many, many clues and cues to be like, ah, yes, I need my car keys once again, free. It's highly effective.
- [26:47]
Dr. Barry Singer
Marisa. That's a great workaround, especially in a family setting when they know you got Ms. But what do you do in a work or social environment? For example, you're out at a function.
- [26:57]
Dr. Marissa Barrera
Yes. When we are in more formal environments where we're trying to be a little bit more discreet, which is completely appropriate. This is really where meeting with a medical speech language patholog or other healthcare professionals who work in this area can help develop targeted intervention strategies for you. You would meet with someone like myself or one of my colleagues and have a very individualized assessment of your cognition, your processing, your word retrieval. It's about nine areas that we would assess individually. From there, we would come up with an evidence based treatment plan, which means we're not just choosing random activities for everybody. It's not cookie cutter. It's very personalized. Looking at your profile of correctness and some errors, we would choose the interventions that we know, not only anecdotally as clinicians, but the research says these are some great ways to improve your particular profile.
- [27:54]
Dr. Barry Singer
And you've seen that benefit, right?
- [27:56]
Dr. Marissa Barrera
Oh, my goodness, absolutely. I have been in Ms. Care nearly 20 years and all we do is help individualize those treatment plans. It's so important. And we want to use some compensatory strategies, which are things that you can do in the moment, once again, that you can blend into targeted therapy. So the perfect picture is the marriage of the two coming together.
- [28:18]
Dr. Barry Singer
So that's a great option for patients really struggling with trouble finding words. Let's segue into, we have a lot of caregivers listening, family members, co workers. How could they best support someone struggling with word finding difficulty?
- [28:33]
Dr. Marissa Barrera
We often just want to jump in and finish the sentence or give them the word or tell them where the keys are or anything else that we could think of. But the best approach is to pause because I can tell you that many times our patients have access to those Words in their word bank. The anomia just requires more time. And then if time has gone on and we're talking 45 seconds to a minute, that is not a lot of time. It feels like a lot of time because there's a silence that we're not accustomed to in normal communication. At that point, you could simply say, would you like me to assist you with that word? Get permission. Ideally, rather than taking over, our support in communication and word retrieval should feel like a partnership, not a hostile takeover.
- [29:22]
Dr. Barry Singer
Let's turn to executive function. Things like planning, multitasking, trying to stay organized. Are there practical tools that help people living with Ms. Function better at work or home?
- [29:33]
Dr. Marissa Barrera
Executive functioning is the equivalent of your computer's operating system. It's what's keeping everything going, moving efficiently. It's our planning, it's our organization, it's our ability to initiate, implement, correct, adjust, shift on a moment's notice. That is executive functioning. And then all the things that we do are like the programs that you open up on your computer, right? If I want to communicate, I open up a word processing or an email thing, and that, that draws from the energy from the operating system. And then someone stops and I want to do something else. Now I'm drawing more, and then all of a sudden I got to work on a presentation or somebody calls on teams or a gchat, and then that's drawing. So then we have all these different skills and tasks drawing on the executive functioning, which makes the system work slower and harder and more effortful. And, and this is what we see for our individuals with Ms. And many other acquired neurological conditions, too many to list. So taking breaks, identifying what you need to do, reducing the load, reducing the draw on the operating system is one of the most practical things you can do. And once again, how do we do that? Through very targeted organization. The most important tools are once again those external support system, the post it notes, the voice reminders, the writing something down, having a checklist, all of these things reduce the draw so you don't have so many of your skills trying to coexist at the same time, which improves access to healthy planning, healthy execution, healthy organization.
- [31:22]
Dr. Barry Singer
I see this in the office. My patients are very distracted with lots of things going on at the same time. And I think it is really hard to stay on task. I think priority too is the one thing that you mentioned. Figure out what's important, what is not important. And that would help declutter the mind, keep you efficient.
- [31:42]
Dr. Marissa Barrera
Absolutely. Dr. Singer, you are right on point. Fatigue and distraction are everywhere fatigue innately, because individuals with ms, we know experience very high levels of fatigue. This Ms. Lassitude, it's a different type of fatigue. It's not just tiredness. It's very much a neurologically driven. And that is a factor that can definitely impact cognition, word finding, executive functioning, walking, ambulation, you name it, the entire body system. And then you add distraction on top. You cannot go more than five minutes on your phone without having a new email message comes in which gives you a ding or something across your screen that's going to get your attention. And then maybe it also appears on a smartwatch or it interrupts your driving to say that you have a new text message. It goes on and on and on. So the first thing I recommend is that when you are in an appointment, when you're working, when you're driving, you're doing anything, you should have your do not disturb on your smart device and then really think about once again, the pacing and the energy of your day. What are the most important things that need to get done right? This goes down to the discussion of prioritization with fatigue and distraction. You want to prioritize and also take a moment to know your body, right? Let's avoid having to do a lot of things if 3pm is a point where you have to crash or sometimes people are slow to start their day because of their pathways, how their body and brain operates. Let's be aware of our periods of really high efficiency and times when perhaps we have to plan and take grace in giving ourselves some resp and respite because that allows us to ultimately have a far more efficient day and manage those cognitive symptoms. Because we're working when our brain and our body can work and we're not just pushing through for the sake of pushing through.
- [33:37]
Dr. Barry Singer
So at what point should a neurologist refer a patient to speech language pathologists or someone living out there with with multiple sclerosis? When should they request to go see speech and language pathologists like yourself?
- [33:51]
Dr. Marissa Barrera
Absolutely. This is a very easy answer. Upon diagnosis for the last 10, 15 years, I've had the pleasure of working with the Consortium for Ms. Centers CMSE and have given a multitude of lectures through their conferences for both providers and individuals with Ms. And a lot of our research and our discussions have been immediately upon diagnosis. And let me tell you why you may not necessarily need to see me, but if you have been diagnosed in the last few months, let's even say the last year, and we have the pleasure to work together and I give you one of my super comprehensive exams, we've established baseline as a team. Your provider knows about these nine areas and the performance pattern that you had. Right. And then maybe I'll say, okay, we'll see you in two years from now or three years from now. Or perhaps you want a letter of workplace accommodations, which is very common. Right. Two or three years have passed, I can see you again and I can go back to the data I captured early in your disease and I can show measurable differences both statistically and functionally. And it allows me to write really strong letters of accommodations or perhaps when individuals need to apply for disability. So establishing baseline care is critical for all healthcare providers to realize the importance of rehabilitation medicine early in the disease.
- [35:17]
Dr. Barry Singer
Right. And obviously if things are changing, it's time to get evaluated, especially if you haven't done that before. And I think probably only a fraction of people living with Ms. Have really had thorough speech therapy evaluation. A lot of people just assume it's for people with slurred speech or swallowing problems, which we do see with people with multiple sclerosis.
- [35:37]
Dr. Marissa Barrera
Absolutely. So it's a very common misconception of our profession in general. And we want our patients and the part public to know that we have an important role in helping you in your entire disease management. Speech language pathologists work on thinking, communication, functional application, which is very relevant here for our individuals with Ms. Amongst swallowing, breathing, respiration, we have a huge role in pulmonary health. So much of what we do is we say belly button to brain. If it has to do from the diaphragm to the top of your brain, this is really the area where we focus in.
- [36:21]
Dr. Barry Singer
Great, let's look ahead. So where do you see cognitive rehab going in Ms. And are there any tools, technologies or approaches that you're really excited about?
- [36:31]
Dr. Marissa Barrera
Absolutely. So there's a lot to be excited about. We're using a part of our research and we publish anywhere from six to eight papers a year looking at cognition using a digital tool, plus its outcome, its effect on employment, driving self reported outcomes. So using digital tools to capture a variety of cognitive skills and having that data recorded is great. This didn't exist even 15, 20 years ago when I started in the world of Ms. Care and medical speech pathology. And this allows us to have really strong artifacts of a patient's digital performance. Remote therapy, long before it was popular, I've been providing telehealth people who wanted to connect with someone like me, a multiple sclerosis certified specialist from across the globe. So tap into remote therapy options. Maybe there isn't somebody who operates like I do in your local community. And if you haven't, then go to some of the big Ms. Resources, msf, cmsc, National Multiple Sclerosis Society, or anyone, even your neurologist and say can you connect me with somebody who is an MSCS certified specialist and remote teletherapy opens up the world when allowable, when medically possible to access improved care and then smart devices. This is all about personalization. Everyone should be using some degree of smart devices to automate and to work efficiently and to reduce the cognitive load and the burden associated with everyday life. And then using physical checklists. I am the type of woman who agrees everybody should have a laminated checklist at the door that they leave their home, making sure that they have everything that need to be successful for the day. And your list could look different than the list of your spouse or your loved one or your kids and it just allows you to know that you're walking out the door for the day already set up for success.
- [38:28]
Dr. Barry Singer
That's wonderful. Well, thank you so much Dr. Barrera for really sharing all your insights for from your years of experience working with people with Ms. And for our listeners out there that are really struggling with short term memory problems, executive function, word finding difficulties, there's a lot of hope out there. Definitely tap into the resources in your community so that you can function better and be a better communicator.
- [38:54]
Dr. Marissa Barrera
My pleasure.
- [39:03]
Dr. Barry Singer
Thanks to our listeners for downloading this episode of the Ms. Living well podcast handling Ms. Word finding and memory strategies. Dr. Sumowski brought clarity to what's happening in the brain and Dr. Barrera provided practical tools to support memory and communication in everyday life. Together they left us with a clear path forward to manage cognitive changes with confidence. Thanks again to TG Therapeutics for sponsoring this episode. Keep in mind the topics we discuss in the show are strictly informational and not medical advice. Any change in your treatment should be discussed directly with your healthcare provider team. Our show is hosted by me, Dr. Barry Singer and Dr. Jamie Holloman and produced by Carrie at Harmony. Our theme music is by Brook for free. If you like this episode, please share it with others living with Ms. And please take a moment to leave a positive review on Apple Podcasts. It really helps more people find out about the show. You can follow me on X R Barry Singer and Dr. Jamie Holloman at BrainBoyNeuro. 1. More information about our guests and their websites can be found in the show Notes Notes for this episode in the blog section on mslivingwell Org. I really appreciate you for listening. This has been an Ms. Living well podcast.