WEBVTT
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It's August 25th, and we have a lot to talk about.
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When we talk about cognitive function that can be affected by MS,
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we could be talking about several different things, including processing speed,
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memory, or the mental skills that we use to plan, focus,
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organize, and make decisions.
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This week, we're talking about the steps people living with MS can take to manage
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and even improve their cognitive function.
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Joining me is one of the leading researchers and experts in how people with
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MS can best function day to day.
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Clinical psychologist and professor in the Department of Physical Medicine and
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Rehabilitation at the University of Michigan, Dr. Anna Kratz.
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But before we get to my conversation with Dr. Kratz, there are a few other things
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that you should know about.
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Since the 1990s, multiple sclerosis has been organized into three very familiar
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clinical categories, relapsing remitting, secondary progressive,
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and primary progressive.
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And since the 1990s, these labels have guided virtually everything that has
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to do with MS, including clinical trials, insurance approvals, and treatment choices.
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They've also defined the way people living with MS understand their own disease.
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Now, if you're a regular listener, you've probably heard me rant about the fact
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that between the 1990s and today, scientists have learned a lot more about MS.
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And we've reached a point where the labels we've always used to describe MS
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have stopped working for us.
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Now, a landmark paper published by a working group on behalf of the International
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Advisory Committee on Clinical Trials in Multiple Sclerosis,
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makes the case that these clinical descriptors are increasingly out of step
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with modern biology, and it's time to build a new, biologically informed framework to describe MS.
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This is an important topic that will ultimately affect everyone in the MS community.
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And before we get into it, for the sake of transparency, I want to let you know
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that I am a member of the working group that wrote this paper,
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and you'll see my name listed as a co-author.
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The central issue highlighted in the paper is that MS is not a collection of separate conditions.
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It's a complex immune-mediated disease where inflammation, demyelination,
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axonal injury and neuronal loss, and tissue repair can all be happening at the same time.
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Because these processes occur at different intensities in different people,
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two individuals who may have the exact same clinical label for their MS might
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have completely different biological drivers operating under the surface.
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Individuals diagnosed as relapsing-remitting MS may feel stable while their
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MS is technically in remission.
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But focal inflammatory damage or silent neurodegeneration can continue accumulating
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and go completely unnoticed between relapses.
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And the transition from relapsing to secondary progressive MS happens gradually,
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And today, it can only be identified retrospectively, that is,
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once it's already happened.
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In clinical practice, pinpointing that exact moment someone shifts from relapsing
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remitting to secondary progressive MS is extremely difficult to define.
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And when it comes to primary progressive MS, now this label identifies people
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whose disability worsens from the very onset of MS.
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There are no so-called remissions.
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But it doesn't represent a single specific biological pathway.
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So rather than defining MS as a fixed sequence of static stages,
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our working group has proposed moving toward dynamic, multidimensional descriptors
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that are updated over time as things change.
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The long-term vision is to create a living biological profile for each individual
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by tracking continuously updated dimensions, including active inflammatory activity,
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and that includes both clinical relapses and subclinical MRI lesions.
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It includes tracking progression independent of relapse activity,
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or PIRA, and the underlying neurodegeneration that goes with it.
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It means tracking fluid biomarkers, including markers of axonal injury and glial
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activation, and the individual's overall degree of neurological impairment and
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their response to treatment.
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Now, just to be clear, the traditional terms we use today to describe MS aren't
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disappearing overnight.
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These terms are still important and necessary for everyday communication and
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for interpreting decades of clinical trial data.
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Instead, the proposed framework is designed to evolve.
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Clinical labels will increasingly be supplemented with biological measurements,
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and new descriptors or biomarkers would have to first be validated and standardized
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across clinics worldwide.
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And any new system would have to remain practical. It would have to be clearly
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understandable not only for clinicians but for patients as well,
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and it would have to be directly useful for improving treatment decisions so
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we're not just swapping one set of rigid classifications for another.
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The ultimate goal of this roadmap is precision medicine, bringing clinical language
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into alignment with actual disease biology.
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By moving toward a dynamic living profile, clinicians will catch disease activity earlier.
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They'll be in a position to intervene with greater precision and tailor therapies
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to what is truly happening in the central nervous system of the person standing in front of them.
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I'll also mention that from the beginning, this work has involved people affected
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by MS, and that will continue as this roadmap continues to be defined and disseminated.
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Now, this is going to be a marathon, perhaps an ultra-marathon,
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certainly not a sprint, so you can be sure we'll continue talking about this
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important next step into the future.
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Meanwhile, if you'd like to review this paper, you'll find a link in today's show notes.
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When someone with relapsing-remitting MS is on a disease-modifying therapy and
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they undergo their annual MRI exam, a new, enlarging, or contrast-enhancing
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lesion might appear on that MRI scan.
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And that can happen even when that person hasn't had a recent relapse or experienced
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any noticeable worsening of their symptoms.
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And because there are no immediate outward signs, these are called clinically silent lesions.
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In fact, a single lesion, which accounts for about 40% of all breakthrough MRI
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activity, is often labeled minimal evidence of disease activity,
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and clinical guidelines don't recommend any escalation in treatment.
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Well, the results of a large international study suggest that finding even a
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single silent lesion on an MRI could be a clear signal to consider stepping
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up to a higher-efficacy disease-modifying therapy.
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In this study, researchers analyzed real-world data from more than 10,000 adults
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with relapsing-remitting MS across 26 different countries between the years 2007 and 2025.
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Using the global MS-based neuroimmunology registry.
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And here's what the numbers revealed over approximately two years of follow-up.
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Compared to having zero silent lesions, having just one silent lesion was linked
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to a 59% higher risk of a future relapse.
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And for those people with multiple silent lesions, that risk jumps to 94%.
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The adjusted risk of confirmed disability worsening was 35% higher in people
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with a single silent lesion and 42% higher for those with multiple silent lesions.
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The researchers then ran an emulated clinical trial using data from 2,264 participants
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taking platform or moderate-efficacy DMTs
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to evaluate what happens when treatment is escalated,
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after silent lesions appear.
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They found that patients who escalated to a moderate or high-efficacy DMT,
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within six months of detecting at least one silent lesion cut their four-year
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relapse risk by more than half compared to those patients who waited for an
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actual clinical event like a relapse before escalating.
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And this benefit held true whether someone had developed one silent lesion or
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multiple silent lesions.
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However, early escalation to a high-efficacy DMT did not significantly reduce
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the risk of confirmed disability worsening during that two-year follow-up window.
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Now, the researchers noted that this could be due to the relatively short follow-up period,
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or a low overall rate of disability worsening, or the fact that current DMTs
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target acute central nervous system inflammation rather than the drivers of
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progressive neurodegeneration.
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The researchers concluded that the results of their study challenged the concept
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of what's considered to be quote-unquote tolerable minimal disease activity on routine imaging.
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So, if you're taking a low- or moderate-efficacy disease-modifying therapy,
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and your routine MRI shows even one new silent lesion, this is a meaningful
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conversation to have with your healthcare team.
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While risks and benefits associated with any DMT should always be weighed carefully,
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this study suggests that you shouldn't necessarily wait to experience a relapse
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before considering a switch to a stronger treatment.
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And if you'd like to review the details of this study, you'll find that link in today's show notes.
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If you're living with relapsing-remitting MS, you're likely used to the typical routine.
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You get your regular MRI scans, and your neurologist looks for new or active lesions.
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And if the scan looks stable and you haven't had a recent symptom flare or relapse,
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you breathe a sigh of relief.
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But many people living with MS know all too well that how they feel cognitively
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doesn't always align with what those standard lesion counts show.
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As we just discussed in the last segment, there can be silent progression taking
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place behind the scenes.
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A fascinating new study out of Europe is shedding light on exactly what may be happening.
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Researchers have identified two specific brain MRI markers that can predict
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cognitive decline in early relapsing-remitting MS with roughly 80% accuracy.
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Even when there are absolutely no new lesions or physical relapses.
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To understand this breakthrough, we have to talk about what some scientists
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are calling PERMA, or progression independent of relapse and MRI activity.
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This describes low-grade chronic inflammation that slowly damages nerve fibers
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over time, but completely flies under the radar of our standard tracking tools.
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By following 87 newly diagnosed relapsing-remitting patients for over six years,
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researchers discovered that nearly two-thirds experienced meaningful cognitive decline,
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and for 80% of those people, that decline happened without a single clinical
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relapse or a single new lesion.
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When the research team looked closely at advanced imaging, two culprits stood out.
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First, they identified paramagnetic rim lesions, or PURLS.
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You can think of these as active borders.
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While the center of an old lesion might look quiet, a paramagnetic rim means
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inflammation is actively simmering around the edges, slowly expanding and eating away at myelin.
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Patients facing cognitive decline had a significantly higher number of these
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paramagnetic rim lesions.
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Then the researchers identified choroid plexus enlargement.
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Now the choroid plexus is an important network of blood vessels that produces
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the fluid surrounding your brain and spinal cord.
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When it gets enlarged, it acts like an open highway, letting traffic lanes of
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damaging immune cells flood straight into the central nervous system.
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This study found a direct link
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between increased choroid plexus volume and worsening cognitive function.
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And here's why these discoveries are so important.
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Historically, cognitive impairment in MS has often been looked at as a static, late-stage symptom.
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This study completely refutes that. It proves that cognitive changes are an
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active window into the earliest, quietest moving parts of MS.
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If clinicians can spot these two hidden markers right at the time of diagnosis,
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it changes the entire treatment playbook.
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Instead of waiting for brain fog or memory gaps to disrupt your daily life,
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your medical team can proactively step in.
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This means doctors can use these indicators to bypass milder foundational treatments
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and reach directly for highly effective high-efficacy therapies designed to
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aggressively put out those inflammatory fires
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before permanent myelod damage occurs.
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The big takeaway from this study is that no new lesions doesn't automatically
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mean your MS is completely asleep.
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If you or a loved one are noticing changes in memory, processing speed,
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or focus, even if your doctor tells you your standard MRI looks completely unchanged, you can speak up.
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Ask your neurologist about advanced imaging markers like paramagnetic rims.
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Your cognitive health is every bit as critical as your physical mobility,
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and catching these silent signs early is your best strategy in maintaining your quality of life.
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If you'd like to review the details of this study, you'll find that link in today's show notes.
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And while we're talking about preserving cognitive function,
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it feels like the perfect time to bring in our guest who works at the forefront
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of developing new ways to do exactly that.
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In a moment, we'll meet Dr. Anna Kratz.
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Dr. Anna Kratz is a clinical psychologist and professor in the Department of
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Physical Medicine and Rehabilitation at the University of Michigan.
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Dr. Kratz's work focuses on understanding how people living with chronic symptoms
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of MS can best function day to day.
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And today, we're talking about cognitive function.
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Welcome back to the podcast, Dr. Kratz.
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Thanks for having me, Jon.
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When we talk about cognitive function in MS, we're looking at a wide range of mental abilities.
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What are the specific cognitive domains like processing speed,
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memory, or executive function that are most commonly affected by MS?
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Yeah, this is a very good question. And the answer I'll give is one that is
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familiar to people with MS.
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And it's that, you know, what's common for everyone may not be your situation.
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So there are very individual what aspects of cognition are affected for any person.
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But I will say that research has been done to sort of find out what's most commonly affected.
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And it seems to be, especially in the areas of processing speed,
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so that is how fast you're able to think, how fast your brain works.
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Different aspects of memory. So this might be memory for new words,
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learning new words, memory for things you've seen,
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memory for experiences you've had, as well as working memory,
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which is the kind of memory where you have to hold some information in mind and sort of work on that.
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So maybe remembering two numbers and then adding them together, that's working memory.
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And then also executive functioning, what we call executive functioning.
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So this is kind of higher, more complex types of cognitive functioning.
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This might be things like planning out your day or making decisions or switching
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between different tasks kind of at the same time. So that flexibility can be
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really affected in people with MS.
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Do we know why MS targets these different cognitive domains?
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Well, it's a little bit unclear. You know, MS can be associated with brain changes
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in both the white matter.
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So that's the cells in the brain that kind of connect and transmit signals.
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And, you know, in MS, white matter is often the focus, often where the myelin
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is actually being damaged, as well as the gray matter.
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So when you think about a brain, you know, people think of it as maybe this gray organ.
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But it's a little bit unclear about exactly what is, how MS is affecting cognitive function.
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One of the things I'm really interested in looking at is how symptoms that are
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related to MS, So things like pain,
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fatigue, depressed mood, anxiety, those sorts of things are affecting cognitive function.
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When you are depressed or have pain, your cognitive function tends to be a little hard compromised.
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And then there are behaviors that are affected in MS, right?
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So sleep problems are very common in MS.
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That includes just kind of poor sleep quality, as well as obstructive sleep
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apnea and central sleep apnea.
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So there's all these kinds of ways that MS can affect cognitive functioning,
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both directly through changes in the body and brain, through these behaviors,
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and through the experience of new symptoms that might be impacting cognition.
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Many people with MS report that their cognitive abilities can fluctuate,
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sometimes pretty wildly, from morning to night.
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Can you explain how your lab's use of real-time smartphone-based tracking helps
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create a more complete picture of these daily ups and downs compared to a one-time
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test in a doctor's office?
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Yeah, thank you for asking about this. I get excited talking about our real-time
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data collection on real-time MS.
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So we use smartphone apps that administer the very brief and kind of easy to
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complete cognitive tests.
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And this is in contrast to what many people with MS experience when they get
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their cognition tested, right?
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They might go into a very quiet room with an examiner who's administering these
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tests. It's long. Maybe you're there all day.
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Um, but the reason we do these, uh, these short tests and we'll do them for
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two weeks at a time, four times a day, believe it or not, people in our studies,
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people with MS are happy to do it because I think they recognize
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that their cognitive function might change throughout the day.
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You know, maybe you're a little fresher in the morning and then you have like an afternoon slump.
00:20:49.520 --> 00:20:51.110
Maybe you're a little better before bed.
00:20:53.000 --> 00:20:58.190
And it addresses the issues of things like if you've had a poor night of sleep,
00:20:59.000 --> 00:21:04.090
we know that sleep is really, really affects cognitive function.
00:21:04.550 --> 00:21:11.440
So we not only can sort of get a better assessment of cognitive change over
00:21:11.760 --> 00:21:17.700
years by taking these multiple days of little assessments and sort of averaging them,
00:21:18.190 --> 00:21:24.920
sort of washes out the effects of poor night of sleep or a day of high stress
00:21:25.410 --> 00:21:31.060
or a day of really low symptoms where maybe you're functioning at your best.
00:21:31.390 --> 00:21:36.970
And sort of gives an overall, a broader snapshot versus that one day.
00:21:36.970 --> 00:21:41.510
You know, if you go in and you've been waiting nine months to see this neuropsychologist
00:21:41.510 --> 00:21:45.290
and get the test, and then you wake up that day and you haven't had good sleep,
00:21:45.290 --> 00:21:49.140
your pain is really bad, you know, you get lost on the way to the clinic,
00:21:49.140 --> 00:21:50.520
you're super stressed out.
00:21:50.800 --> 00:21:53.840
Maybe that's not really what your cognitive function looks like.
00:21:54.160 --> 00:21:57.470
And it's not what your cognitive function looks like in your daily life,
00:21:57.730 --> 00:22:01.800
Which is another way that it's different to be doing it on a phone when you're
00:22:02.330 --> 00:22:07.680
in Target or, you know, you're in your lived environment.
00:22:07.790 --> 00:22:13.000
So we think it's a much better way of assessing actual cognitive functioning
00:22:13.270 --> 00:22:15.810
for a person in their lived environment.
00:22:16.950 --> 00:22:21.370
And, you know, we're just at the very beginning of sort of using these methods
00:22:21.590 --> 00:22:26.830
to try to get a better sense of cognitive functioning in people living with MSK.
00:22:27.370 --> 00:22:30.940
Well, thinking about that test you take in a doctor's office,
00:22:31.590 --> 00:22:36.080
have you found that there's a difference between what a patient feels is happening
00:22:36.080 --> 00:22:40.620
to their memory and what the standardized tests actually show?
00:22:41.510 --> 00:22:48.090
Yes. People might be surprised to hear that what you perceive in terms of your
00:22:48.090 --> 00:22:53.700
cognitive function, so how you feel your brain is working, is not highly related
00:22:53.700 --> 00:22:55.900
to how your brain is actually working.
00:22:56.220 --> 00:23:02.050
So, we have found some evidence that when we do these smartphone tests,
00:23:02.650 --> 00:23:07.220
that, you know, if you had one score in the morning and then another score in
00:23:07.220 --> 00:23:11.390
the afternoon, that you can actually say, you know, I think my cognitive function
00:23:11.390 --> 00:23:12.730
has changed a little bit.
00:23:13.130 --> 00:23:15.250
But it's very, very subtle.
00:23:16.700 --> 00:23:25.370
And people tend to report bigger, noticeable changes in their cognition if they
00:23:25.370 --> 00:23:28.570
started off with very high cognitive function.
00:23:28.570 --> 00:23:32.050
So that's the other thing is I always say, like, if you've had a very sharp
00:23:32.050 --> 00:23:36.140
knife and it dulls just a little bit, you notice versus if
00:23:36.950 --> 00:23:41.210
somebody, you know, is not challenging themselves cognitively,
00:23:41.430 --> 00:23:45.080
they may not notice those changes as dramatically.
00:23:45.690 --> 00:23:50.730
But, yeah, I think, you know, things like depression and anxiety,
00:23:51.350 --> 00:23:58.030
especially if you're anxious about your cognitive function, can really affect your perception.
00:23:58.830 --> 00:24:05.110
And I think, you know, slight changes in cognitive functioning that is maybe
00:24:05.650 --> 00:24:06.860
socially embarrassing.
00:24:06.860 --> 00:24:11.500
So like a lot of times we hear people complaining that like,
00:24:11.500 --> 00:24:16.500
I can't find my words and that, you know, that kind of social contact can make
00:24:16.500 --> 00:24:19.430
that problem seem bigger than it actually is.
00:24:20.130 --> 00:24:24.410
And I think the other thing is like cognitive flip ups happen to everybody.
00:24:24.730 --> 00:24:30.100
But I think when you are living with MS, it can be really easy to say like, oh, this is my MS.
00:24:30.880 --> 00:24:35.960
Sometimes it is and sometimes it isn't. And I think that that's one of the reasons,
00:24:35.960 --> 00:24:40.550
too, that there's like this disconnect between people's perception of their
00:24:40.550 --> 00:24:43.240
cognitive function and how their brains actually work.
00:24:44.670 --> 00:24:49.230
You and your team have published the results of the COG-Detect MS study.
00:24:49.660 --> 00:24:55.520
Your research showed that 63% of the participants in that study were using five
00:24:55.520 --> 00:24:58.100
or more medications to manage their MS.
00:24:58.920 --> 00:25:02.570
Since disease-modifying therapies are only part of that equation,
00:25:03.250 --> 00:25:07.780
what are the most common symptom management medications that people are taking
00:25:08.170 --> 00:25:11.810
that might quietly be piling up for someone?
00:25:12.520 --> 00:25:18.550
Uh-huh. Yeah, so some of the medications, well, and before I go into that,
00:25:18.550 --> 00:25:24.190
I just want to thank you for bringing up the topic of multiple medications.
00:25:24.630 --> 00:25:28.820
You know, the more medications you take, the harder it is to sort of track the
00:25:28.820 --> 00:25:34.560
interaction with those medications and any side effects that might emerge from those interactions.
00:25:35.140 --> 00:25:40.300
And so what we found is that, you know, lots of people are taking medications
00:25:40.300 --> 00:25:44.990
that are not super negative in terms of cognitive function.
00:25:44.990 --> 00:25:50.450
These are things like antidepressants, which we found a benefit in processing
00:25:50.450 --> 00:25:58.480
speeds of how fast your brain is working with the type of antidepressant and SSRI.
00:25:58.480 --> 00:26:04.740
SRI, that's the Selective Serotonin Reuptake Inhibitor, things like Zoloft or Lexapro.
00:26:06.000 --> 00:26:11.530
But, you know, thankfully, some of the medications that are most detrimental
00:26:11.530 --> 00:26:17.040
to cognitive function, these are things like opioids, benzodiazepines,
00:26:17.870 --> 00:26:20.790
those are less frequently taken in MS.
00:26:20.790 --> 00:26:25.940
And I think physicians have gotten the word that, like, a lot of these medications
00:26:25.940 --> 00:26:30.990
that are really bad for cognitive functioning, um, should not be used long term.
00:26:30.990 --> 00:26:34.240
So I think that that, you know, if we had done this study 20 years ago,
00:26:34.240 --> 00:26:38.490
I think it probably would have been different as even 10 years ago. Um,
00:26:39.330 --> 00:26:42.300
The other thing is, is there are some medications that, you know,
00:26:42.300 --> 00:26:44.640
may be used pretty frequently.
00:26:44.640 --> 00:26:52.690
These are things like gabapentin or corticosteroids that may or may not have
00:26:52.690 --> 00:26:58.420
a very strong effect on cognitive function, depending on what else you're taking and who you are.
00:26:59.010 --> 00:27:02.790
You know, take the example of gabapentin. Sometimes we hear complaints that,
00:27:02.790 --> 00:27:06.890
like, I just feel kind of out of it or foggy when I'm on gabapentin.
00:27:07.960 --> 00:27:11.680
But having a conversation with your doctor about all of your symptoms,
00:27:11.680 --> 00:27:17.050
and sometimes MS presents with pretty complex symptom burden,
00:27:17.560 --> 00:27:22.360
it's like, you know, are you better with a little bit of fogginess and not the
00:27:22.360 --> 00:27:25.300
bad fact that you see? So it's definitely fascinating.
00:27:26.270 --> 00:27:30.920
You know, you should bring up your cognitive concerns with your doctor and put
00:27:30.920 --> 00:27:37.030
them on par with whatever concerns you have, you know, just have that conversation.
00:27:37.530 --> 00:27:41.730
If you don't express the concern, your physician won't know that,
00:27:42.140 --> 00:27:47.930
you know, your domesticity is being managed really well, but maybe you're experiencing
00:27:47.930 --> 00:27:49.630
some new cognitive symptoms.
00:27:49.630 --> 00:27:52.900
So I think bringing it up and asking questions like, I don't know,
00:27:52.900 --> 00:27:55.710
does this medication affect cognitive function?
00:27:56.120 --> 00:28:00.490
Would it affect my cognitive function in combination with the other thing you're giving me?
00:28:00.850 --> 00:28:06.520
And just really asking a lot of questions, being curious, and initiating that
00:28:06.520 --> 00:28:08.710
conversation with your doctor.
00:28:09.560 --> 00:28:13.080
I think you've already started to answer my next question. I'm wondering,
00:28:13.080 --> 00:28:18.450
when someone is taking a complex cocktail of drugs, like something to manage
00:28:18.450 --> 00:28:21.520
spasticity, something else for bladder issues,
00:28:21.970 --> 00:28:25.290
and then there are often pain relievers in that mix,
00:28:25.830 --> 00:28:30.140
How do these drugs interact to compound cognitive fatigue?
00:28:30.870 --> 00:28:35.630
There's no one answer for that, right? Like, it really depends on the person
00:28:35.630 --> 00:28:37.370
and the specific medication.
00:28:37.900 --> 00:28:41.870
You know, and you mentioned pain medications. We actually have found evidence
00:28:41.870 --> 00:28:48.370
across different populations that non-steroidal anti-inflammatory drugs,
00:28:48.370 --> 00:28:50.470
So this is Motrin or ibuprofen,
00:28:51.210 --> 00:28:56.570
you know, that if that is a medication that works well for your pain management,
00:28:56.570 --> 00:29:02.210
that maybe that would be helpful for for your, you know, for managing both pain
00:29:02.210 --> 00:29:04.940
and not having an effect on your cognitive function.
00:29:06.280 --> 00:29:13.260
On the other hand, if you're taking hydrocodone or an opioid and that's all
00:29:13.260 --> 00:29:18.220
that's managing your pain, you might expect cognitive side effects.
00:29:19.270 --> 00:29:24.550
The interactions, though, are hard. And I think it's much easier for doctors
00:29:24.550 --> 00:29:29.620
to add new medications to address the new symptoms you're coming in with.
00:29:31.010 --> 00:29:35.670
I think it's very hard to wean people off of meditations, especially if they're
00:29:35.670 --> 00:29:39.470
working for one thing, but you think they might be affecting something else.
00:29:39.470 --> 00:29:45.220
So if something is managing your pain, you know, it might be sort of a cost
00:29:45.220 --> 00:29:48.940
benefit analysis and it might be a trial and error.
00:29:49.330 --> 00:29:52.730
I don't think you really know until you try to make some changes.
00:29:53.850 --> 00:29:58.550
Obviously, in concert with your doctor. Would not recommend dropping anything
00:29:59.090 --> 00:30:02.760
just because you're noticing some changes without talking to your doctor.
00:30:02.760 --> 00:30:07.640
And also know that especially when starting a new medication or changing a dose,
00:30:08.120 --> 00:30:13.700
there might be like a short-term adjustment period where your symptoms kind of go up.
00:30:13.700 --> 00:30:17.940
Like maybe you feel foggy for a while when you start a new med or increase your
00:30:17.940 --> 00:30:21.330
dose. So, you know, getting in contact with your doctor and say,
00:30:21.330 --> 00:30:23.760
I'm noticing this. Should I be concerned?
00:30:24.250 --> 00:30:28.790
Can we adjust it? And sometimes two doctors will be able to give you a similar
00:30:28.790 --> 00:30:32.340
medication that just has a slightly different risk profile.
00:30:32.340 --> 00:30:37.500
So I think, you know, exploring those options and having a conversation and
00:30:37.500 --> 00:30:42.320
being willing to try out some alternative plans.
00:30:43.210 --> 00:30:46.360
Are there certain red flag combinations
00:30:46.360 --> 00:30:50.110
of medications that clinicians and patients should watch out for?
00:30:51.170 --> 00:30:57.280
I think the highest risk medications right now, and this is really well recognized
00:30:58.410 --> 00:31:01.640
in medicine, are the benzodiazepines.
00:31:01.640 --> 00:31:06.780
So these are, were traditionally used mostly for anxiety, but are sometimes
00:31:06.780 --> 00:31:09.440
used for sleep disorders and MS.
00:31:10.450 --> 00:31:14.230
And again, the opioid medications are really risky.
00:31:14.830 --> 00:31:21.390
The one thing I'll bring up is that we don't really know the effects of cannabis
00:31:21.390 --> 00:31:26.480
or marijuana on cognitive function, especially in combination with any of these meds.
00:31:27.870 --> 00:31:34.000
As you probably know, marijuana is either medically or recreationally legal in many states,
00:31:35.370 --> 00:31:42.960
but is really understudied largely because of federal limitations on our ability to study it.
00:31:43.630 --> 00:31:48.320
But I think, you know, that is sort of an unknown. I will say that in older
00:31:48.320 --> 00:31:53.900
adults, there is some evidence that some cannabis use could be beneficial,
00:31:54.360 --> 00:31:58.620
but that is very preliminary and there's real risk.
00:31:59.110 --> 00:32:03.410
So I think, you know, the research needs to catch up to what people are doing
00:32:04.950 --> 00:32:08.790
and we don't have the full answer yet. Hopefully we'll know in the next few years.
00:32:11.180 --> 00:32:15.300
You've studied how common substances like cannabis, caffeine,
00:32:15.300 --> 00:32:18.640
alcohol, impact MS symptoms in real time.
00:32:19.240 --> 00:32:23.150
Caffeine, for example, it's the ultimate pick-me-up for MS fatigue,
00:32:23.420 --> 00:32:28.270
but your study showed it also predicts a near-future spike in stress.
00:32:28.800 --> 00:32:34.350
So what should people know about the hidden cognitive or symptomatic costs of
00:32:34.350 --> 00:32:38.150
relying on what have really become everyday substances?
00:32:38.670 --> 00:32:45.110
Yeah, I think really paying attention. And you may even start tracking or logging
00:32:46.000 --> 00:32:50.250
your intake of certain substances and what happens to you after the fact.
00:32:51.390 --> 00:32:55.690
You know, I know for me, I drink coffee every morning, but there's definitely
00:32:55.690 --> 00:32:58.780
a tipping point, right? Like it helps perk me up in the morning.
00:32:58.780 --> 00:33:04.900
But if I have just an extra cup, then I'm very stressed out and not functioning at my best.
00:33:05.480 --> 00:33:11.970
So I think people with MS, especially if you're sort of knowingly taking any
00:33:11.970 --> 00:33:16.650
of these substances to manage symptoms or to feel better, you know,
00:33:17.190 --> 00:33:22.510
I know that people will sometimes drink alcohol to manage stress or pain.
00:33:23.770 --> 00:33:27.290
And so it might have some benefits. But what are the downsides?
00:33:27.600 --> 00:33:33.440
And just paying attention to both the benefits and the risks and the good part
00:33:33.570 --> 00:33:37.970
of any of these substances and then the negatives is, I think, really important.
00:33:39.010 --> 00:33:43.610
I think caffeine is a really interesting one, right? Because like I just said,
00:33:44.250 --> 00:33:48.780
with my own life, it sort of reduces the fatigue but increases the stress.
00:33:49.260 --> 00:33:53.880
Fatigue and stress both affect cognitive function. Do you have like a potentially
00:33:53.880 --> 00:33:58.370
positive effect and a potentially negative effect? Do they just gamble out?
00:33:58.870 --> 00:34:00.210
We don't know the answer to that.
00:34:01.280 --> 00:34:05.980
If someone is listening to this conversation and suspects that their medication
00:34:05.980 --> 00:34:11.810
regimen is making their brain fog worse, how should they initiate that conversation
00:34:12.060 --> 00:34:14.960
with their neurologist or primary care physician?
00:34:15.790 --> 00:34:21.930
I think it depends on how severe the change is. If you're noticing big changes,
00:34:22.050 --> 00:34:27.120
I do think that calls were a very urgent message to your physician
00:34:29.240 --> 00:34:37.680
to suss out what's going on. I do think any kind of changes should be brought up.
00:34:38.760 --> 00:34:43.920
You may call for a special appointment to talk about them or wait for your regular
00:34:44.520 --> 00:34:47.710
routine visit if it's more modest.
00:34:48.400 --> 00:34:52.720
You might also think about collecting some information to bring to your doctor
00:34:52.720 --> 00:34:55.720
about, you know, patterns you see.
00:34:56.820 --> 00:35:04.220
You know, they may be asking some additional questions about exactly what kinds of cognitive problems.
00:35:04.220 --> 00:35:09.550
So, you know, especially if your brain feels foggy, making some documentation
00:35:09.550 --> 00:35:12.090
of it so that when you go into the appointment, you're not like,
00:35:12.090 --> 00:35:13.750
oh, I don't really remember.
00:35:13.750 --> 00:35:19.560
Um, I think the other thing to think about is that your physician might be able
00:35:19.560 --> 00:35:22.550
to, uh, screen out for some additional
00:35:22.550 --> 00:35:26.490
things that might be affecting your cognition beyond medication.
00:35:26.940 --> 00:35:33.980
Um, one great example is sleep apnea can really affect your cognitive function.
00:35:33.980 --> 00:35:36.910
We've done some early research showing that and, um,
00:35:38.700 --> 00:35:43.260
Sleep apnea is really underdiagnosed in MS, but it's very common.
00:35:43.260 --> 00:35:47.170
So, for instance, if you're finding that you're kind of falling asleep during
00:35:47.170 --> 00:35:51.320
the day or you're waking up feeling really unrefreshed, even though you've slept
00:35:51.320 --> 00:35:55.920
through the night, or if somebody tells you you snore a lot or stop breathing in the night,
00:35:57.230 --> 00:36:03.320
it's very worth asking for a sleep study from your physician to see if you have
00:36:03.320 --> 00:36:06.140
sleep apnea, how bad is it and should it be treated?
00:36:06.140 --> 00:36:11.470
Because that is another treatment that your doctor can help you with in terms
00:36:11.470 --> 00:36:13.750
of improving your cognitive function.
00:36:14.510 --> 00:36:18.630
Beyond looking at the impact of medications on cognitive function,
00:36:18.950 --> 00:36:24.410
your lab has also researched how people use compensatory cognitive strategies
00:36:24.710 --> 00:36:27.000
or workarounds in their daily lives.
00:36:27.860 --> 00:36:32.340
What are some of the most effective mental habits or tools you've seen patients
00:36:32.340 --> 00:36:36.050
use to successfully get around their cognitive challenges?
00:36:36.720 --> 00:36:41.070
That's a great question. You know, when it comes to addressing cognitive function
00:36:41.070 --> 00:36:45.630
and MS, there's really two sort of ways that we're thinking about this.
00:36:46.290 --> 00:36:50.140
Can we do anything to sort of improve the cognitive function?
00:36:50.540 --> 00:36:56.120
And then alternatively, can we teach people to sort of improve their life,
00:36:56.120 --> 00:36:59.780
even if their cognitive function doesn't change, right? Like you can't approve
00:36:59.780 --> 00:37:03.970
the cognitive function. And that's what those compensatory strategies are.
00:37:04.400 --> 00:37:10.760
And it's really remarkable the number of ways that people just naturally sort
00:37:10.760 --> 00:37:15.100
of figure out how to work around their cognitive challenges.
00:37:16.050 --> 00:37:21.820
Many people will start to use ways of recording.
00:37:21.820 --> 00:37:25.320
So this might be a notebook or now everybody has a smartphone,
00:37:25.320 --> 00:37:30.940
you can leave yourself, like, voice messages, that sort of thing.
00:37:30.940 --> 00:37:37.820
So really using the tools that you have at your disposal to remember things.
00:37:38.850 --> 00:37:45.840
Another big tool that is used oftentimes is day planning. So planning out the
00:37:45.840 --> 00:37:49.690
day and tracking your activities.
00:37:50.410 --> 00:37:55.420
Partly, this helps people not overdo it, helps people pace.
00:37:56.770 --> 00:38:00.690
So, you know, there's a lot of different sort of strategies people can use.
00:38:01.050 --> 00:38:04.140
I'd say that the day planning is one of the big ones.
00:38:05.460 --> 00:38:10.230
And, you know, just find out what works for you. And the strategy that you will
00:38:10.230 --> 00:38:15.550
use will depend on what you're struggling with. Like, are you struggling with attention?
00:38:16.320 --> 00:38:20.520
You know, maybe in that case, you want to limit the amount of time you need
00:38:20.520 --> 00:38:22.350
to attend to any given thing.
00:38:23.400 --> 00:38:27.490
You know, if you want to watch a movie, maybe break it up into sections so you
00:38:27.490 --> 00:38:30.030
don't sort of lose the thread partway through.
00:38:30.380 --> 00:38:35.330
Versus memory issues where you might want to use some of these tools like a
00:38:35.330 --> 00:38:38.020
notebook, like post-it notes.
00:38:39.000 --> 00:38:40.780
Like a calendar or a day planner.
00:38:42.090 --> 00:38:45.790
Looking ahead, when you think about the future of MS rehabilitation,
00:38:46.220 --> 00:38:52.010
do you see us moving toward more personalized digital toolkits like your My
00:38:52.010 --> 00:38:56.790
MS Toolkit project to help people manage their invisible symptoms from home?
00:38:57.560 --> 00:39:00.340
I think it's part of the answer, right? I think
00:39:01.740 --> 00:39:09.670
we are developing web-based and app-based tools that people can use to self-manage
00:39:09.820 --> 00:39:14.150
symptoms like pain, fatigue, depressed mood, et cetera.
00:39:15.840 --> 00:39:21.580
But I don't think it's the full story. And I think one of the real struggles with digital tools
00:39:22.680 --> 00:39:27.710
that people don't really engage with them as much as they engage with a person.
00:39:28.560 --> 00:39:33.870
However, I do think that it can be sort of a way to fill the gap, right?
00:39:33.870 --> 00:39:38.820
There's not enough healthcare providers, there's not enough physicians,
00:39:38.820 --> 00:39:43.680
psychologists, social workers, occupational therapists to go around.
00:39:43.870 --> 00:39:49.340
And there's real barriers for people. Maybe you have to drive have a long way to see somebody.
00:39:49.730 --> 00:39:55.420
Maybe there are financial barriers to getting person-to-person care.
00:39:55.800 --> 00:40:02.400
So I do think, especially for people who are sort of really comfortable with
00:40:02.400 --> 00:40:07.310
digital technology and digital tools, these can be great.
00:40:08.910 --> 00:40:11.750
And then, you know, maybe use in combination
00:40:14.270 --> 00:40:21.290
With providers. In fact, we have a study, one of my collaborators at the University
00:40:21.290 --> 00:40:22.960
of Washington, Don Eady,
00:40:23.770 --> 00:40:30.950
and I are working on a project to sort of look at the combination of the MyMS
00:40:30.950 --> 00:40:37.670
toolkit with a coach, a very light touch, you know, checking with a person, and comparing that
00:40:38.840 --> 00:40:41.450
to pull-on therapy with a psychologist.
00:40:41.450 --> 00:40:46.090
So I think one of the things we're doing besides developing these tools is testing
00:40:46.090 --> 00:40:50.210
how best to use them and how we can get people
00:40:50.680 --> 00:40:56.690
to have, you know, the best quality of life and to take on some of these self-management skills.
00:40:57.220 --> 00:41:00.510
Like, is it just enough to give them a website? Do they need a coach?
00:41:00.510 --> 00:41:03.490
Do they need full therapy to kind of understand?
00:41:03.850 --> 00:41:06.630
So we're testing those things out right now.
00:41:07.700 --> 00:41:11.800
Well, I remember the first time I had you join me on the podcast,
00:41:11.800 --> 00:41:17.240
we talked about My MS Toolkit, but that's been a minute. So please remind us,
00:41:17.240 --> 00:41:20.000
where can people find My MS Toolkit today?
00:41:20.880 --> 00:41:33.080
Yeah, great question. So it is online at www.mymstoolkit.com.
00:41:33.660 --> 00:41:39.160
I will say we are right now in the process of updating and improving the website,
00:41:39.160 --> 00:41:41.510
so stay tuned for a whole new look.
00:41:41.900 --> 00:41:51.020
It's a refresh that is much needed, but the version one of my MS Toolkit is
00:41:51.020 --> 00:41:54.770
currently available and will be for the foreseeable future.
00:41:55.570 --> 00:42:00.110
Dr. Anna Kratz, as always, I appreciate all you do to improve the lives of people
00:42:00.110 --> 00:42:03.040
living with MS. Thanks so much for talking with me today.
00:42:03.790 --> 00:42:05.680
Thanks for having me on, Jon. Good to see you.
00:42:06.680 --> 00:42:11.390
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered
00:42:11.390 --> 00:42:13.080
by the National MS Society.00:42:13.520 --> 00:42:17.600
And you can share this episode of the podcast by letting your friends or family00:42:17.600 --> 00:42:25.390
members know that all they have to do is point their web browser at realtalkms.com slash 4006. 169.00:42:26.020 --> 00:42:30.040
You'll find that link in today's show notes so you can easily copy and paste00:42:30.040 --> 00:42:32.510
it right into an email or a text.00:42:33.260 --> 00:42:38.160
In next week's episode, you'll meet Benji Wilkins. Benji is a magician in the00:42:38.160 --> 00:42:40.930
UK and Benji's mom lives with MS.00:42:41.290 --> 00:42:46.800
Like many other people, MS has had a real impact not only on her health but on her finances.00:42:47.440 --> 00:42:52.010
So Benji had an idea for what I have to call an epic fundraiser.00:42:52.480 --> 00:42:56.830
I hope for planning to join me next week because this is a story you won't want to miss.00:42:57.810 --> 00:43:04.290
I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
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