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RealTalk MS
Episode 459: This Is Not Your Father's MS Rehabilitation with Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice
00:47:55
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- [00:18]
A
It's June 16, and we have a lot to talk about. For years, the standard medical advice for someone diagnosed with multiple sclerosis was simple, cautious, and, as we now know, incredibly limiting. Take it easy, don't overexert yourself, and get plenty of rest. Physical therapy was often treated as a reactive last resort measure, something to help you adapt to a loss of function after the fact. But today, like almost every other aspect of Ms. Care, neurological rehabilitation is being entirely rewritten. It's no longer about just managing decline. It's about leveraging emerging technologies to proactively build resilience, retrain the brain, and adopt cutting edge exercise science to fundamentally change the trajectory of life with Ms. This week we're diving deep into how the landscape of Ms. Rehabilitation has evolved from a passive, cautious approach into a dynamic, science driven, evidence based approach to patient care. And there's no better way to illustrate this paradigm shift than talking with my three guests who are at the forefront of this research and practice. Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice. We're going to discuss how exercise serves as a powerful tool for both cognitive health and physical health, how AI is impacting Ms. Rehabilitation by putting the patient at its center, and how modern physical rehab strategies are being designed to accommodate people living with Ms. At every level of ability and mobility. You're about to hear three conversations about breaking old boundaries and redefining what's possible. Dr. Brian Sandroff is the Director of the Exercise Neurorehabilitation Research Laboratory at Kessler Foundation's center for Neuropsychology and Neuroscience Research. I caught up with Dr. Sandroff at the recent Consortium of Ms. Center's annual meeting where his presentation focused on whether exercise can be used to treat cognitive impairment. In a moment, we'll hear my conversation with Dr. Brian Sandroff. Doctor Brian Sandroff directs the Exercise Neurorehabilitation Research Laboratory at Kessler Foundation's center for Neuropsychology and Neuroscience Research, where he also serves as Assistant Director. The lab focuses on creating and evaluating exercise training programs to enhance the physical, cognitive and brain health of people with multiple sclerosis. And it's always my pleasure to meet up with Dr. Sandroff at CMSC. It's good to see you.
- [03:08]
B
Great to see you too, John. Thanks for talking with me today.
- [03:11]
A
You know, historically, cognitive rehabilitation focused on compensatory strategies like using planners or memory aids. Your work is helping to prove that exercise can actually target the underlying neuropathy pathways. Your presentation today directly asked can exercise be used to treat cognitive impairment? You know, for a long time exercise was viewed as a way to improve general health or mobility in Ms. How does framing exercise as a direct treatment for cognitive impairment change how a neurologist might prescribe it in the clinic?
- [03:48]
B
So that is a wonderful question, because that's the question that really drives our research is if exercise can demonstrably change the brain. We know that cognition comes largely from the brain. And if we can develop our programs in such a way that target the brain, that can make changes in networks in the brain that are so important for cognitive performance and thinking performance, we've essentially created a target for improving cognition and everyday life outcomes in people with Ms. So if we can provide the biological evidence to support exercise benefits on the brain and central nervous system, and then we can develop evidence that shows that that extends into cognitive tests, and we have evidence where it helps people with Ms. In their daily life, then hopefully that evidence can get integrated into clinics where neurologists and primary care providers can recommend exercise as an approach to help cognition in people who are living with the disease.
- [04:48]
A
When we look at standard disease modifying therapies, they're highly effective at reducing relapses, but have a limited direct impact on repairing pre existing cogn damage. Do you see exercise as a necessary synergistic therapy alongside DMTs to protect and restore that cognitive reserve?
- [05:09]
B
That is a trial I would absolutely love to do, and one that's on our radar. We've argued in the past that exercise could have potential disease modifying properties associated with its biological benefits, but we never actually directedly tested it either against disease modifying therapies or more importantly, in concert with disease modifying therapies. As you're right, the DMTs are not designed to improve cognition, but they've been wonderfully effective at improving many other aspects. So it is something that we wonder often and something we would love to test.
- [05:43]
A
We'll keep our eye on that then for sure. In your targeted randomized control trials, you've looked specifically at supervised treadmill walking and its impact on verbal learning and memory. Why does aerobic walking specifically seem to have such a profound impact on learning and memory compared to low intensity resistance, resistance or stretching?
- [06:05]
B
So our research not only is focused on learning and memory, but also on cognitive processing speed as the primary cognitive problem in Ms. And what we think is going on is that exercise involves all these different demands that cause the brain to work really hard to be able to continue to exercise. And by continuing to exercise those brain areas, the brain becomes more efficient at communicating within itself in terms of long term communication from the front to the back, from the right to the the left hemisphere. And by becoming more efficient the brain, then the brain becomes more efficient. And that increased efficiency results in downstream improvements in cognition and other outcomes, including learning and memory or cognitive processing speed that rely upon those cognitive the brain outcomes where that increased efficiency not just supports exercise, it also supports cognition or thinking performance.
- [07:03]
A
Your pilot neuroimaging data showed that 12 weeks of treadmill training actually helped preserve hippocampal volume in patients with relapsing remitting Ms. Can you explain the mechanisms at play there? Is it driven by increased blood flow, neuroplasticity or perhaps neuroprotective factors like bdnf?
- [07:25]
B
So our research suggests that it has to do with increased connectivity in the brain as a primary way to potentially preserve hippocampal volume. And one of the interesting findings of that particular study is that the results are consistent with those from animal research done in 1992, for example, where environmental enrichment in mice was associated with increased neurogenesis in the hippocampus. And exercise is certainly an enriched environment, where when people are walking on a treadmill, that's not something you do on your everyday life and your everyday existence, where that's really making your brain work hard. And the hippocampus is a region that really responds to increased environment. So environmental enrichment. So one of our going hypotheses was that by continuing to exercise three days a week for three months, we really had that stimulation going on. We're not quite sure if it's blood flow or we're not quite sure if it's molecular cellular mechanisms like BDNF or IGF1 for example. But we think that those are more support mechanisms, with the primary mechanism being all that work that your brain has to do to be able to continue to exercise and then that causes adaptations.
- [08:42]
A
Thalamic and hippocampal atrophy can occur very early in the MSD's disease process. Right. Does your research suggest that exercise is most effective as a preventative strategy early in the diagnosis, or can it still restore volume and functional connectivity in patients with long standing progressiveness?
- [09:03]
B
So that's been one of the million dollar questions in our lab as well. Our research largely supports these effects in people who have had some symptoms and have had some advancement of the disease, but not quite to the point of advanced progressive Ms. But we do have other evidence, specifically from the COGX trial, that exercise plus cognitive rehabilitation did induce some brain changes in people with progressive Ms. Over a 12 week, 12 week period. So again, there's signal there. We just have to really do a good job of isolating it to figure out what exact prescription might be best for individuals who present differently with the disease.
- [09:42]
A
Well, speaking of prescriptions, clinicians often struggle with prescribing a specific dose of exercise for cognition. Based on your current data, is there an ideal frequency, intensity, duration that's required before a patient starts showing measurable improvement?
- [09:59]
B
So our data right now are not quite in the advanced stages of having a definitive 100% proven prescription. But the data from our lab that has resulted in cognitive and brain improvements largely involve walking at a moderate to vigorous intensity, starting very small at 10 minutes per session, a couple days a week, moving up to three days a week, and all the way up to about 30 minutes of moderate to vigorous exercise. Now, the nice thing about that is that aligns really well with the Canadian physical activity guidelines for adults with ms, where our walking intervention really mirrors the aerobic prescription that is appropriate for people with Ms. So those guidelines are publicly available and they give tips and tricks for how to do the exercise, where to do the exercise, and what people need to do for general health benefits. But maybe that could extend to cognition and brain health, too.
- [10:52]
A
At cmsc, you're speaking to an audience of neurologists, nurses, physical therapists, and psychologists. So if a clinic wants to implement your findings next Monday, what's the biggest barrier they need to overcome? Is it patient adherence? Or is it a lack of standardized cognitive screening, something like SDMT to track progress? Or is it something else?
- [11:14]
B
I think the biggest barrier would be personnel and time because our interventions involve a lot of behavioral support with participants, where participants interact with behavior coaches who help teach participants with Ms. The skills and knowledge to change and maintain their exercise behavior so that they can reap the benefits. Now, if a clinician wants to deliver that on Monday, I'm not sure how they would allocate time and personnel needed to be able to deliver that behavioral support, especially considering that our behaviorists in our trials are really thoroughly trained to think quickly on their feet, use supportive accountability mechanisms to help when barriers arise, and help each individual participant with their specific situation. Now, I don't know if those personnel are readily available in clinic. I'm guessing not. But the next phase of research for us, one of the next phases involves looking at the potential implementation of our programs in clinic. Because at the end of the day, that's where the magic happens. And that is something that we very much need to do if our program truly does work.
- [12:17]
A
People living with Ms. Who are experiencing cognitive fatigue often find it incredibly difficult to motivate themselves to begin an exercise regimen. What strategies or behavioral hooks have you found to be effective in helping patients overcome that initial barrier so they can stick with the program long enough to see those benefits?
- [12:37]
B
I think the initial part is the hardest, for sure, especially when you're feeling fatigued. One of the things that you can keep in the back of your mind, though, is that of all the outcomes studied in response to exercise, in terms of the benefits, the single most well established one is that exercise reduces fatigue in people with Ms. And it's to the effect of about a half a standard deviation in magnitude, which has been shown in the literature to be universally remarkable. Half standard deviation is a big deal. That is one thing you can keep in the back of your mind, but in the front of your mind. It starts small. It's every little bit is like saving a little bit of money in the bank. And over time, it grows. And you have to listen to your body. On some off days, you don't need to go to the gym and exercise vigorously for an hour. Starting small, sitting less, moving more, and slowly accumulating more and more exercise over the long haul. It's a marathon, not a sprint. Pardon the punishment.
- [13:32]
A
Well, Dr. Brian Sandroff, thank you for all you do to improve the lives of people who are living with Ms. Thanks so much for talking with me today.
- [13:39]
B
Of course. And thank you for all you do as well.
- [13:42]
A
Dr. Brad Willingham is the director of the Multiple Sclerosis Research Program at the shepherd center in Atlanta. I began my conversation with Dr. Willingham by asking him how that continuous stream of data that a wearable device produces can be synthesized into actionable information that a clinician can put to use when their patient is in front of them. In a moment, we'll hear my conversation with Dr. Willingham.
- [14:14]
C
Every day there's a new device generating new streams of data, and the resolution is getting greater and greater. Continuous data streams, millions of data points coming in. But how do we make sense of it? How do we extract data from that? Well, fortunately, that's exactly what AI is good at. And specifically, generative AI, you know, large language model technology. It excels at ingesting large amounts of information from very different sources and assimilating it, synthesizing it, and summarizing it. And so by applying that to remote monitoring data sources in the clinic, we can now realize the full potential of these technologies because they Are they're giving us unprecedented insights into the needs and progress and abilities of patients. But how do we realize that potential? Well, we need some help synthesizing it, and that's what AI can do. So if you think about converting millions of data points into a brief, succinct paragraph of what a clinician needs to do, then we have a way to integrate it into workflow.
- [15:20]
A
So that AI tool, if you will, is sort of serving as middleware between the millions of data points and that one succinct paragraph.
- [15:30]
C
Absolutely. But a key to that is informing the middleware with clinical perspective and patient perspective. And so when we think about translating innovation into impact, it's critical to engage the patients and the clinicians early and often so that we can design system prompts or tailored AI so that the summaries that it's generating and the synthesis that it's performing is relevant to the objective. Right. So interviewing patients, interviewing clinicians, what's important to you in this data? What can inform your decisions and empower you, and then making sure the AI is focused on that part of the information and providing and prioritizing that piece of information.
- [16:13]
A
I'm going to circle back to that in just a moment. I wanted to ask you, when you're designing an AI enabled decision support tool for Ms. Rehabilitation, given how wildly unpredictable and individualized Ms. Symptoms can be, how do you train the system to replicate or enhance a human clinician's reasoning?
- [16:33]
C
That is where the clinician in the loop and the patient in the loop strategies become key. So the AI is it excels again at ingesting large amounts of information and extracting key points. Is there an anomaly? Was there a change two weeks ago, a week ago? Is there a trend? But then to your point, to actually make that clinically actionable, to personalize it within the context of that individual patient's journey, that's where it becomes critical to have the patient in the loop, clinician in the loop models where the AI is summarizing and synthesizing the data, but then it's clinical decision support, not clinical decision making. Right. And so I think the patient and clinician, the loop model is really the key to that personalization.
- [17:19]
A
I've heard you talk about the six domains of clinical decision support. Which of these domains do you think is the most important or perhaps the most difficult to get right when managing progressive forms of ms?
- [17:31]
C
So when you think about progressive Ms. And the large timescales at which data must be considered, one of the things that's going to become Critical is creating care models that are predictive and proactive. And so by getting data streams over long periods of time and then creating predictive models that can then cue, hey, you know, there might be a change in function, there might be a disease progression. I think that piece. So that's going to fall in the practice of medicine domain, right? I think that piece may be a priority. There is using the AI to make medicine more proactive, predictive and personalized.
- [18:15]
A
Traditional clinical metrics like the EDSS or an occasional in office walking test can only capture a brief snapshot of a patient's status. As you alluded to just a few minutes ago, people with Ms. Can often experience significant day to day fluctuations in mobility, cognitive fatigue and energy using wearable sensors. How can tailored remote monitoring systems capture some of these invisible symptoms like fatigue?
- [18:44]
C
Absolutely. So you hit it on the head. We have phenomenal measurements in the clinic that can get very detailed, rigorous quantitative information about an individual's status and their symptoms. But most of the time that only applies to a snapshot of the here and now. Whereas as you point out, folks living with Ms. Experience day to day variability in across all symptoms, mobility impairment, fatigue, depression, anxiety, pain, sleep, et cetera. So two things. One, the in clinic measurements, they're incapable of capturing that variability. So it's difficult to detect the signal and the noise. When you have a measurement every six months, is that the signal or is that the noise?
- [19:28]
A
Well, and how much does that even change whether that appointment is 9 o' clock in the morning or 4 o' clock in the afternoon?
- [19:34]
C
Absolutely. The dineural component too, not just day to day, but time of day, relationship to medications and other lifestyle factors. Absolutely. And so by getting that continuous data stream, you can then start to identify the signal and the noise. The other piece kind of in the healthcare component too, is it removes the burden of having to recall, you know, oh, you experienced increase in fatigue, when was that? Two weeks ago, three days ago? Have you experienced decline in mobility? Well, you know, so removing that burden on the patient to having to always recall and recall with such high stakes and accuracy. If you have the wearable data streaming in, you have it automatically captured and quantified and then you can refer to it and had a really data driven discussion.
- [20:20]
A
How do you ensure the wearable technology itself remains accessible and user friendly for individuals who might be dealing with significant manual dexterity or visual challenges?
- [20:32]
C
So two things. One, this is, as I alluded to earlier, making technologies accessible, practical, able to integrate into workflows, and usable during everyday life. That can only be achieved if we engage patients and clinicians early and often in the development process. Okay, identify the problem, but then test the prototype iteratively. You know, identify the barriers, identify the accessibility challenges, refine the prototype. That way by the time you get to a product that you're ready to test in the real world, it's already been informed and tested and so it's, it has a chance to be more accessible and valid in the real world. The other thing too is tailored solutions. As we know, Ms. Effects has a cascading effect throughout the body and affects multiple, multiple systems with a wide range of different symptoms. And so also providing remote sensing strategies that are relevant to that individual as well.
- [21:28]
A
You know, to your point, the shepherd center is famous for its unique culture where researchers are heavily integrated directly into clinical spaces rather than isolated in their lab. You hold knowledge translation meetings with both clinicians and people living with Ms. To design your studies from the ground up. Can you think of a specific piece of feedback or a barrier raised by a patient or physical therapist that might have changed how you approached a remote monitoring technology?
- [21:58]
C
Oh, absolutely. Our entire line of research surrounding sensor infused textiles. So smart socks, smart wheelchair cushions that actually precipitated out of a knowledge translation discussion. Because traditionally our work had explored the application of wrist worn wearables, which are extremely valuable in evaluating cardiac function, circadian rhythms, things like this. However, when it comes to activity, those measurements are measuring activity and steps at the wrist. So if someone is using an assisted device such as bilateral trekking poles or rollator, it may limit upper extremity oscillations and therefore their activity counts will not be reflected by that measurement, they won't be captured. And so that discussion actually led us to explore other ways to more accurately quantify activity in folks who may be using assistive devices, which ultimately led us to to our work around sensor infused smart socks to evaluate gait and physical activity.
- [23:00]
A
Well, you just solved a mystery for me. I wondered what the story was behind those smart socks, but boy, that makes so much sense. A major hurdle with home based remote monitoring is long term patient adherence once the initial novelty of a wearable device wears off. What strategies have you found effective for keeping patients engaged in tracking their data over long periods of time?
- [23:24]
C
Traditionally, we have deployed a cadence of virtual check ins, right? And so setting up kind of those synchronous telehealth discussions via, you know, telecommunications video conferencing platform. However, this is a good opportunity and that's affected by having conversations. How's it going Are you wearing your device? Are there any challenges with it? Very effective. But I see this also as an opportunity. We talked early about patient in the loop, clinician in the loop being, you know, critical, especially in Ms. Care where it's very nuanced. However, in this case I do see this as an opportunity for agentic AI where there is not a patient in the loop or a clinician in the loop and we can have those kind of automated reminders. Hey, it looks like you haven't worn your wearable in three days. Is everything okay? Is the technology working? And then the agentic solution can actually troubleshoot that for them as well based on using retrieval augment generation, where the AI is referencing the user manual.
- [24:17]
A
So your bot can call my bot.
- [24:19]
C
Correct.
- [24:21]
A
You know, as you and I have talked about in past conversations, we're in the very, very early stages of what's going to be a massive paradigm shift in how AI impacts healthcare. I'll let you get your crystal ball out and look ahead five years. How do you envision AI changing the daily workflow of physical and occupational therapists who specialize in Ms. Care?
- [24:43]
C
A deeper understanding of what's going on outside the clinic. We have such important interactions that occur in the clinic with our therapist and our provider team. But again, it's difficult for patients to communicate how Ms. Is impacting their everyday life activities and it's difficult for providers to understand that despite increasing emphasis on the patient doctor interaction. We need a deeper quantitative understanding of that. And I think some of these wearable sensing technologies, once we figure out the piece of ingesting it it and making it interpretable and summarizing it with AI, I think we're then again going to get to fully harness the power of remote sensing technologies and clinicians are going to get such a better understanding of what is going on in each patient's everyday life. Again, the day to day changes how it's impacting their lifestyle, activities, their obligations, their vocations. So I think that it really is the first the patient clinician interaction is really going to start focusing more on what's going on at home and treatments may be able to be more tailored to achieving goals that are relevant to outside the clinic rather than standard clinical benchmarks such as a timed walk test.
- [26:04]
A
Well, Dr. Brad Willingham, I want to thank you for the important work you do in ushering in the next generation of Ms. Care and I want to thank you so much for talking with me today.
- [26:15]
C
Likewise, John. Thank you for all you do for the community.
- [26:18]
A
Dr. Laura Rice is an associate professor of health and kinesiology and the assistant director of the center on Health, Aging and Disability at the University of Illinois. Dr. Rice is an expert on assistive technology, disability and wheelchair use, and fall prevention. Dr. Rice and I discussed how individuals with Ms. Who rely on a wheelchair for mobility can still exercise safely. In a moment, you'll hear our conversation. Exercise delivers measurable benefits for everyone living with ms, including those people living with Ms. Who rely on a wheelchair for mobility. So this conversation isn't strictly about exercising in a wheelchair. It's about exercising safely in a wheelchair. Joining me today to talk about exercise for people with Ms. Who use wheelchairs is Dr. Laura Rice. Dr. Rice is an associate professor of health and kinesiology and the assistant director of the center on Health, Aging and Disability at the University of Illinois. And she's an expert on assistive technology, disability and wheelchair use and fall prevention. Welcome to the podcast, Dr. Rice.
- [27:34]
D
Thank you so much for having me today.
- [27:36]
A
What would you say is the biggest misconception that the general fitness community and even some clinicians have about exercise for non ambulatory Ms. Patients?
- [27:48]
D
Sure. Thank you so much for this question. I just think actually to even go a little bit more general, I think a lot of people think that for people living with ms, once they start using a wheelchair, it's kind of the end of the line and you really can't do anything and there's not a lot of options available. But there's so many options available. And it's, it's really important that clinicians that people who use wheelchairs living with Ms. Really start to consider that there's so many resources out there, there's so many things that people can do, and exercise is a critically important piece of this puzzle. Staying fit, staying strong is really important for people to help maximize their use of their wheelchair and most importantly, so that they can continue to do the activities that they enjoy both in their home and then in their community as well.
- [28:49]
A
Well, as you point out, there are plenty of people who are living with Ms. Who don't necessarily know that exercise, once you're using a wheelchair, is even an option. And I'm thinking those people may have already spent some considerable time leading a sedentary kind of lifestyle. So is there a specific starting dose of exercise you'd recommend for someone who has been sedentary and uses either a manual or power chair?
- [29:19]
D
Sure. I would encourage people to start by talking to their doctor or a therapist. It is good to just kind of check in with these healthcare professionals to make sure that you are safe to exercise. However, once you kind of do that check in, you might want to talk to a physical therapist. They could help you start to get a program going. But really you can start simple. You don't have to do anything super fancy. You know, first thing you can do is just sitting in your wheelchair, starting to do some marching, kind of lifting your knees up and down one at a time, kicking your leg out straight. If doing each of those exercises ten times makes you feel tired, then, then great. That is a great place to start. You know, even just a little bit of movement is, is wonderful. So you do not have to start in a really intense program in any way, shape or form. Just try to do a few small things each day, and then you can build up to. To a, a bigger program.
- [30:26]
A
I know you've done extensive research on fall prevention. What are the most common ways wheelchair users injure themselves during exercise? And I guess most importantly, how can they be avoided?
- [30:39]
D
Sure. So during exercise, I think the biggest thing is overuse. People are trying to maybe push themselves a little bit too hard and especially their upper extremity. We need to be very careful, very protective of especially those shoulders, because people are using their shoulders for all their activities of daily living. The thing I see, people injuring themselves the most, trying to do too much, maybe using weights that are perhaps too heavy, and developing shoulder pain. Because exercises, plus all your other activities of daily living put a lot of stress on those shoulders. So paying attention to how your shoulders are feeling, your wrists and your elbows are also important, but it's usually the shoulders that we start to see the problems with first. So paying attention to how you're feeling and adjusting your activity based on that is really important.
- [31:38]
A
So are there specific things those wheelchair users can do to exercise their upper bodies without risking those strain or overuse injuries?
- [31:49]
D
Yeah, absolutely. So, you know, starting with a low number of reps, doing just again, kind of listening to your body and doing everything within your. Your comfort level. I would recommend starting out without any weights. Just move your different joints in different ways that feel comfortable to you. Also making sure that you're having good posture when you are exercising. We want to make sure that we're kind of sitting up in a straight position. That way our bodies can move in the way that they are intended and most effective to move. Move kind of slumping over can especially can put our shoulders in an awkward position that can cause additional problems. So staying in a good posture is very important. So yeah, I guess kind of takeaway message Start either with very, very light weights or no weight at all. Just trying to move your extremity and paying attention to your posture as well.
- [33:00]
A
We know heat sensitivity is a major factor in Ms. What specific cooling strategies do you recommend for wheelchair users to prevent uhof's phenomenon during a workout?
- [33:12]
D
Sure. Yeah. So making number one, making sure that you're paying attention to what clothing that you're wearing. You don't want to wear a lot of heavy clothes while you're exercising. Light, breathable materials are key. Paying attention to your environment as well. Making sure that you're in a room that's. That's not too hot. Maybe have a fan with you. That will help quite a bit. Using a cooling towel, Keeping that close to you would be really helpful as well. And also make making sure that you hydrate effectively during exercise. That will keep keep your body running in the way that it should ride.
- [33:54]
A
For listeners who may not have access to a specialized adaptive gym, are there common household items or DIY modifications that can make standard exercise equipment safer for them?
- [34:08]
D
Sure. Yeah, absolutely. So I will first off say that there are a lot of programs out there that you really don't need any equipment and also are free to ask access. So for example, there's several seated tai chi programs that are available that a lot of people that I've talked to really, really enjoy. You don't need any equipment. You can stay seated in your wheelchair. There's also free options online that you can follow along with an instructor. So you actually don't need any equipment at all. However, if you do want to use some weights. Yeah, there's plenty of things that you can use at your usually for hand weights. I encourage people to use just a water bottle. It's pretty easy to grip. You can also adjust it pretty easily by pouring out some water or adding some more water in to get, you know, the, the weight that works well for you. For lower extremity exercise, this is something that you would have to buy. But just some light weight that you can Velcro around your ankles if you want to give more resistance to. Maybe if you're kicking your legs out or lifting them up, doing a marching. Those items are pretty inexpensive and you can usually get them at, you know, through some online retailers or just at like a local, you know, kind of big box stores. So those things are pretty easily accessible to most people, you know. Other suggestions at your home, just kind of think about different surfaces that might be good for you to sit on as well. Sitting on the edge of the Bed can be helpful if you want to get out of your wheelchair. So just looking around your home and thinking about what can be used a lot of times you'll see some great things.
- [36:14]
A
When a wheelchair user is engaged in high intensity seated exercise, what should they be mindful of regarding skin integrity and pressure sores?
- [36:23]
D
Yeah, so kind of starting off to making sure that you're setting yourself up for success is really important. You want to make sure that your cushion that you're sitting on is of good quality, that's really matched to you to make sure that it's giving the pressure relieving qualities that you particularly need. Same thing with the back support. And that is important if you're exercising or not exercising. However, when you do start exercising, you do want to make sure that you're in a secure position, making sure that you're not sliding around your chair too much because that, that would be the biggest thing causing some shear forces when you're exercising that could lead to a skin breakdown. If you're pretty stable while you're seated, you have a good cushion, you should be in pretty good shape again with anybody. I encourage people to make sure they're doing pressure reliefs. If you use a manual wheelchair, kind of doing a manual pressure relief. If you use a power wheelchair and have tilt and recline, using those features to do a pressure relief, leave about every 15 minutes. And also doing skin checks when and if you're particularly concerned after exercising, maybe get out of your wheelchair. Either if you do your skin checks yourself to see if you have any redness or skin breakdown on your sitting surface, or have a care partner come and help you with that as well. That's the best protocol to make sure that you're not developing any problems.
- [38:03]
A
Problems for a wheelchair user with ms, how can they distinguish between what I'll call good exercise fatigue and an Ms. Related fatigue flare up?
- [38:14]
D
Yeah, I think, you know, you just need to pay attention to your body and, and be aware of what kind of good exercise response is. It is very typical, especially if you're doing kind of some strength training that you know the day about. You know, you know, a couple hours after you stop exercising, maybe even into the next day, you are going to have some muscle soreness. You might feel some fatigue as well. But this should go away pretty quickly. So if you're, you're exercising on Monday morning, Tuesday morning, you might feel a little bit sore and fatigued, that's okay. But if it doesn't start to go away by kind of Tuesday afternoon, that's maybe something that you want to think, you know, okay, this isn't just normal. And you know, seek out some resources to make sure that you're staying safe.
- [39:12]
A
When is it safe to exercise alone? And at what point should a wheelchair user ensure that they have a caregiver or trainer close by to spot them?
- [39:22]
D
Sure. Yeah. So I think, you know, it's very individualized depending on the specific person and their balance. I, when I encourage people, talk to people about exercising, I do encourage to have maybe a care partner close by just to make sure that if you do fall or you can or somebody could help prevent a fall if one kind of starts to happen. However, if you feel pretty stable in your wheelchair, doing some seated exercises without a care partner present is, is, is probably okay, but you need to really know yourself. Do you, you know, some things to consider is certainly your balance. Do you feel stable with, in whatever surface you're on doing those exercises? And then also your response to exercise. Do you, do you typically respond okay to exercise or do you have some flare ups or some problems? If you feel pretty confident that things have, and certainly don't exercise by yourself for the first time either, do a couple exercise routines with a care partner present just to see how you're going to react. If you've done it, if you've done this a couple times and things have gone pretty smoothly, then I think it would be okay. You know, you can use your judgment, but you know, make sure you take some other precautions too. Make sure that you have your phone close by, that if something does come up, you can very quickly call somebody and get some assistance. Also, again, making sure that you're hydrating throughout your exercise routine so that you don't get overheated, that you don't, you know, start to have some, some trouble. So, so just be smart about it, get to know your body and how you react to exercise and, and kind of go from there and, and make an informed choice if you feel comfortable exercising or not, that people who rely
- [41:36]
A
on a wheelchair for mobility, as well as people who are dealing with balance issues, often have a pronounced fear of falling. How does that psychological barrier keep them from even attempting exercise? And how can they go about developing the confidence to move forward.
- [41:53]
D
Sure. Yeah. So fear of falling is very common among people living with Ms. Who use wheelchairs. Our research has found that upwards of 75% of people report a fear concerns about falling during their daily activities. And this can be very detrimental because once people start to develop this concern, they often are very fearful of Doing anything, including exercise. And it's oftentimes things that they actually are very capable of doing, but that concern prevents them from engaging in those activities. And this can really lead to kind of a downward spiral because people aren't doing their activities and they're getting weaker, and so they actually are increasing their risk of falling or hurting themselves during exercise. So it is very important for people to start to develop the confidence in their ability to exercise or honestly do other activities that they find enjoyable. I think working with a trusted care partner or a therapist is very important, where they can have various safety nets so that they, they can make sure that they're doing these things in a safe, effective way. They can get feedback from the therapist to make sure they're doing things properly and also putting those different safeguards in place as well. Like we talked about having your phone close by, staying hydrated, really knowing your body so that you know what to expect during exercise. So really making it a team effort with your care partners, with your clinical team, talking about what your goals are, and working with everybody together so that you can build the confidence that you can safely do these different activities.
- [43:55]
A
I'm a bit of a tech geek, so I have to ask, are there any emerging technologies or wearable devices that you're particularly excited about for monitoring safety for wheelchair users?
- [44:08]
D
Yes. So unfortunately, a lot of the automated fall detection devices that are out there on the market don't do a great job with picking up falls from a wheelchair. So my research team actually did some testing with kind of a very common smartwatch that has fall detection built into it. It we found it only picked up about 5% of falls from a wheelchair. So my team is actually working to develop a fall detection device that is specifically specific to people who use wheelchairs. We developed an algorithm that can detect kind of the movement, the pattern of fall that typically occurs from a wheelchair, and now are working to testing that out to make sure that it is, is validated. So certainly the devices that are on the market, they can be useful. Just be aware though, that they aren't designed to detect falls from a wheelchair. So you do have to be careful. I encourage again and again, I keep saying it, but having your phone close by, if you do have a smartwatch that you wear, kind of learn how to use it and so that you can contact a person. Your phone does have to be be kind of close by to stay connected, unless you have specific service for the watch or the wearable device. But having those things close by and being very, very consistent and making sure that you always have it with you, because the one time you forget it, that's the time you're going to need it for sure.
- [45:53]
A
Well, I'm going to take this opportunity right now to invite you back on the podcast. When the device your team is working on is ready of prime time, we'd love to have you back to talk about it.
- [46:05]
D
Sure. Yeah, absolutely. I'd be very happy to talk about it.
- [46:08]
A
Well, Dr. Laura Rice, I want to thank you for all you do to improve the quality of life for people living with Ms. And thanks so much for talking with me today.
- [46:17]
D
Oh, thank you so much for having me. I really appreciate it.
- [46:20]
A
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society, and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 459. You'll find that link in today's show notes, so you can easily copy and paste it right into an email or a text. In next week's episode of Real Talk ms, you're going to meet Matt Naggs and Colin Goodman, two guys living with Ms. Who somehow decided that it would be a good idea to run the entire length of Ireland. They're raising Ms. Awareness, they're raising money to fund Ms. Research, and they're raising a lot of interest. You won't want to miss my conversation with two men with multiple sclerosis who are about to embark on what amounts to multiple marathons. I'm John Strum. Thanks for listening. Stay safe and make healthy, healthy choices.