RealTalk MS
RealTalk MS
Navigating multiple sclerosis is easier when you understand the science behind it. Join host Jon Strum each week as he translates complex MS research, treatment breakthroughs, and healthcare news into clear, accessible language. Whether you’re living with MS, caring for a loved one, or looking for answers, RealTalk MS connects you with top neuroscientists, advocates, and the information and insights that matter most to your MS journey.
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June 15, 2026

Episode 459: This Is Not Your Father's MS Rehabilitation with Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice

Episode 459: This Is Not Your Father's MS Rehabilitation with Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice
RealTalk MS
Episode 459: This Is Not Your Father's MS Rehabilitation with Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice
Apple Podcasts Spotify
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Season 9 Research Insights MS Treatments

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."

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, three experts share their thoughts on what MS rehabilitation looks like in 2026...and it's not your father's MS rehab!

Modern MS rehabilitation

Dr. Brian Sandroff breaks down his groundbreaking research on how tailored exercise regimens—like treadmill walking—can actually improve memory, boost processing speed, and spark cognitive recovery.

Dr. Brad Willingham discusses the game-changing world of continuous remote monitoring, explaining how wearable sensors and AI are turning real-world, 24/7 data into hyper-personalized, dynamic treatment plans.

And Dr. Laura Rice delivers a practical exercise blueprint for individuals with MS who use wheelchairs. You'll learn how to jumpstart a safe fitness routine while effectively managing risks like heat sensitivity, shoulder overuse, skin breakdown, and the fear of falling.

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: We're taking a deep dive into MS rehabilitation :22

Dr. Brian Sandroff answers the question, "Can exercise be used to treat cognitive impairment?" 2:10

Dr. Brad Willingham explains how AI can play a meaningful role in MS rehabilitation and clinical care 13:41

Dr. Laura Rice shares tips and strategies for exercising safely if you rely on a wheelchair for mobility 26:18

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RealTalk MS Episode 459
Guest: Dr. Brian Sandroff, Dr. Brad Willingham, and Dr. Laura Rice

WEBVTT

00:00:18.130 --> 00:00:21.370
It's June 16th, and we have a lot to talk about.

00:00:22.240 --> 00:00:27.030
For years, the standard medical advice for someone diagnosed with multiple sclerosis

00:00:27.220 --> 00:00:32.130
was simple, cautious, and as we now know, incredibly limiting.

00:00:33.050 --> 00:00:37.710
Take it easy, don't overexert yourself, and get plenty of rest.

00:00:38.600 --> 00:00:42.650
Physical therapy was often treated as a reactive last resort measure,

00:00:43.020 --> 00:00:46.820
something to help you adapt to a loss of function after the fact.

00:00:47.500 --> 00:00:53.300
But today, like almost every other aspect of MS care, neurological rehabilitation

00:00:53.300 --> 00:00:55.060
is being entirely rewritten.

00:00:55.550 --> 00:01:01.060
It's no longer about just managing decline. It's about leveraging emerging technologies

00:01:01.060 --> 00:01:03.350
to proactively build resilience,

00:01:03.680 --> 00:01:08.780
retrain the brain, and adopt cutting-edge exercise science to fundamentally

00:01:08.780 --> 00:01:11.630
change the trajectory of life with MS.

00:01:12.390 --> 00:01:17.240
This week, we're diving deep into how the landscape of MS rehabilitation has

00:01:17.240 --> 00:01:23.190
evolved from a passive, cautious approach into a dynamic, science-driven,

00:01:23.190 --> 00:01:25.690
evidence-based approach to patient care.

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And there's no better way to illustrate this paradigm shift than talking with

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my three guests who are at the forefront of this research and practice,

00:01:34.950 --> 00:01:39.780
Dr. Brian Sandroff, Dr. Brad Willingham and Dr. Laura Rice.

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We're going to discuss how exercise serves as a powerful tool for both cognitive

00:01:45.310 --> 00:01:51.120
health and physical health, how AI is impacting MS rehabilitation by putting

00:01:51.120 --> 00:01:52.640
the patient at its center,

00:01:53.340 --> 00:01:58.360
and how modern physical rehab strategies are being designed to accommodate people

00:01:58.360 --> 00:02:02.680
living with MS at every level of ability and mobility.

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You're about to hear three conversations

00:02:05.660 --> 00:02:09.510
about breaking old boundaries and redefining what's possible.

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Dr. Brian Sandroff is the director of the Exercise Neurorehabilitation Research

00:02:15.390 --> 00:02:20.960
Laboratory at Kessler Foundation's Center for Neuropsychology and Neuroscience Research.

00:02:21.710 --> 00:02:25.850
I caught up with Dr. Sandroff at the recent Consortium of MS Center's annual

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meeting where his presentation focused on whether exercise can be used to treat cognitive impairment.

00:02:32.960 --> 00:02:36.400
In a moment, we'll hear my conversation with Dr. Brian Sandroff.

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Dr. Brian Sandroff directs the Exercise Neurorehabilitation Research Laboratory

00:02:46.940 --> 00:02:51.220
at Kessler Foundation's Center for Neuropsychology and Neuroscience Research,

00:02:51.570 --> 00:02:53.730
where he also serves as Assistant Director.

00:02:54.410 --> 00:02:59.200
The lab focuses on creating and evaluating exercise training programs to enhance

00:02:59.200 --> 00:03:03.480
the physical, cognitive, and brain health of people with multiple sclerosis.

00:03:04.010 --> 00:03:08.110
And it's always my pleasure to meet up with Dr. Sandroff at CMSC. It's good to see you.

00:03:08.210 --> 00:03:10.450
Great to see you too, Jon. Thanks for talking with me today.

00:03:11.080 --> 00:03:16.440
You know, historically, cognitive rehabilitation focused on compensatory strategies

00:03:16.780 --> 00:03:19.150
like using planners or memory aids.

00:03:19.730 --> 00:03:25.660
Your work is helping to prove that exercise can actually target the underlying neuropathways.

00:03:26.080 --> 00:03:32.180
Your presentation today directly asked, can exercise be used to treat cognitive impairment?

00:03:32.840 --> 00:03:38.980
You know, for a long time, exercise was viewed as a way to improve general health or mobility in MS.

00:03:39.450 --> 00:03:44.910
How does framing exercise as a direct treatment for cognitive impairment change

00:03:44.910 --> 00:03:47.540
how a neurologist might prescribe it in the clinic?

00:03:48.110 --> 00:03:52.520
So that is a wonderful question, because that's the question that really drives

00:03:52.520 --> 00:03:59.800
our research, is if exercise can demonstrably change the brain,

00:04:00.130 --> 00:04:02.630
we know that cognition comes largely from the brain.

00:04:03.050 --> 00:04:06.240
And if we can develop our programs in such a way that target the brain,

00:04:06.240 --> 00:04:10.570
that can make changes in networks in the brain that are so important for cognitive

00:04:10.570 --> 00:04:12.110
performance and thinking performance,

00:04:12.570 --> 00:04:17.540
we've essentially created a target for improving cognition and everyday life

00:04:17.540 --> 00:04:19.180
outcomes in people with MS.

00:04:19.800 --> 00:04:25.030
So if we can provide the biological evidence to support exercise benefits on

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the brain and central nervous system,

00:04:27.190 --> 00:04:31.960
and then we can develop evidence that shows that that extends into cognitive

00:04:31.960 --> 00:04:35.820
tests, and we have evidence where it helps people with MS in their daily life,

00:04:36.210 --> 00:04:39.230
then hopefully that evidence can get integrated into clinics where neurologists

00:04:39.230 --> 00:04:44.880
and primary care providers can recommend exercise as an approach to help cognition

00:04:44.880 --> 00:04:46.740
in people who are living with the disease.

00:04:47.760 --> 00:04:52.730
When we look at standard disease-modifying therapies, they're highly effective

00:04:52.730 --> 00:04:59.530
at reducing relapses, but have a limited direct impact on repairing pre-existing cognitive damage.

00:05:00.290 --> 00:05:06.630
Do you see exercise as a necessary synergistic therapy alongside DMTs to protect

00:05:06.630 --> 00:05:08.290
and restore that cognitive reserve?

00:05:08.990 --> 00:05:12.480
That is a trial I would absolutely love to do and one that's on our radar.

00:05:13.610 --> 00:05:17.910
We've argued in the past that exercise could have potential disease-modifying

00:05:17.910 --> 00:05:22.710
properties associated with its biological benefits, but we never actually directly tested it

00:05:23.440 --> 00:05:26.300
either against disease-modifying therapies or, more importantly,

00:05:26.300 --> 00:05:28.640
in concert with disease-modifying therapies.

00:05:29.070 --> 00:05:33.040
As you're right, the DMTs are not designed to improve cognition,

00:05:33.280 --> 00:05:37.280
but they've been wonderfully effective at improving many other aspects.

00:05:37.700 --> 00:05:41.900
So it is something that we wonder often and something we would love to test.

00:05:42.820 --> 00:05:47.600
We'll keep our eye on that then, for sure. In your targeted randomized control

00:05:47.600 --> 00:05:52.510
trials, you've looked specifically at supervised treadmill walking and its impact

00:05:52.510 --> 00:05:53.940
on verbal learning and memory.

00:05:54.720 --> 00:05:59.790
Why does aerobic walking specifically seem to have such a profound impact on

00:05:59.790 --> 00:06:04.370
learning and memory compared to low-intensity resistance or stretching?

00:06:04.870 --> 00:06:08.670
So our research not only is focused on learning and memory, but also on cognitive

00:06:08.670 --> 00:06:12.350
processing speed as the primary cognitive problem in MS.

00:06:12.760 --> 00:06:16.840
And what we think is going on is that exercise involves all these different

00:06:18.130 --> 00:06:22.860
demands that cause the brain to work really hard to be able to continue to exercise.

00:06:23.220 --> 00:06:28.670
And by continuing to exercise those brain areas, the brain becomes more efficient

00:06:28.670 --> 00:06:33.430
at communicating, uh, within itself in terms of long-term communication from

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the front to the back, from the right to the left hemisphere.

00:06:36.150 --> 00:06:40.950
And by becoming more efficient, the brain then, uh,

00:06:41.890 --> 00:06:46.160
the brain becomes more efficient. And that increased efficiency results in downstream

00:06:46.160 --> 00:06:50.190
improvements in cognition and other outcomes, including learning and memory,

00:06:50.520 --> 00:06:55.430
or cognitive processing speed that rely upon those cognitive, the brain outcomes,

00:06:55.820 --> 00:07:00.230
where that increased efficiency not just supports exercise, it also supports

00:07:00.460 --> 00:07:01.970
cognition or thinking performance.

00:07:03.120 --> 00:07:08.810
Your pilot neuroimaging data showed that 12 weeks of treadmill training actually

00:07:08.810 --> 00:07:13.980
helped preserve hippocampal volume in patients with relapsing-remitting MS.

00:07:14.720 --> 00:07:19.340
Can you explain the mechanisms at play there? Is it driven by increased blood

00:07:19.340 --> 00:07:24.910
flow, neuroplasticity, or perhaps neuroprotective factors like BDNF?

00:07:25.310 --> 00:07:31.400
So, our research suggests that it has to do with increased connectivity in the

00:07:31.400 --> 00:07:35.570
brain as a primary way to potentially preserve hippocampal volume.

00:07:36.310 --> 00:07:40.270
And one of the interesting findings of that particular study is that the results

00:07:40.270 --> 00:07:43.330
are consistent with those from animal research done in

00:07:43.670 --> 00:07:50.330
1992, for example, where environmental enrichment in mice was associated with

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increased neurogenesis in the hippocampus.

00:07:52.960 --> 00:07:56.520
And exercise is certainly an enriched environment where when people are walking

00:07:56.520 --> 00:07:59.610
on a treadmill, that's not something you do on your everyday,

00:07:59.880 --> 00:08:04.830
you know, life and your everyday existence where that's really making your brain work hard.

00:08:05.200 --> 00:08:09.630
And the hippocampus is a region that really responds to increased environment.

00:08:09.630 --> 00:08:15.110
So environmental enrichment. So one of our going hypotheses was that by continuing

00:08:15.110 --> 00:08:20.340
to exercise three days a week for three months, we really had that stimulation going on.

00:08:21.450 --> 00:08:25.190
We're not quite sure if it's blood flow or we're not quite sure if it's molecular

00:08:25.190 --> 00:08:29.360
cellular mechanisms like BDNF or IGF-1, for example.

00:08:29.490 --> 00:08:35.800
But we think that those are more support mechanisms with the primary mechanism

00:08:35.800 --> 00:08:39.260
being all that work that your brain has to do to be able to continue to exercise.

00:08:39.620 --> 00:08:41.170
And then that causes adaptations.

00:08:42.000 --> 00:08:47.800
Thalamic and hippocampal atrophy can occur very early in the MSD's disease process, right?

00:08:48.230 --> 00:08:53.240
Does your research suggest that exercise is most effective as a preventative

00:08:53.240 --> 00:08:58.290
strategy early in the diagnosis, or can it still restore volume and functional

00:08:58.290 --> 00:09:01.980
connectivity in patients with longstanding progressiveness?

00:09:02.280 --> 00:09:05.340
So that's been one of the million-dollar questions in our lab as well.

00:09:06.100 --> 00:09:10.650
Our research largely supports these effects in people who have had some symptoms

00:09:10.650 --> 00:09:14.900
and have had some advancement of the disease, but not quite to the point of

00:09:15.280 --> 00:09:16.780
advanced progressive MS.

00:09:17.170 --> 00:09:20.520
But we do have other evidence, specifically from the COG-X trial,

00:09:20.800 --> 00:09:26.210
that exercise plus cognitive rehabilitation did induce some brain changes in

00:09:26.210 --> 00:09:31.560
people with progressive MS over a 12-week period. it. So again, there's signal there.

00:09:31.870 --> 00:09:35.350
We just have to really do a good job of isolating it to figure out what exact

00:09:35.350 --> 00:09:41.070
prescription might be best for individuals who present differently with the disease.

00:09:41.630 --> 00:09:46.160
Well, speaking of prescriptions, clinicians often struggle with prescribing

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a specific dose of exercise for cognition.

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Based on your current data, is there an ideal frequency, intensity,

00:09:54.740 --> 00:09:58.860
duration that's required before a patient starts showing measurable improvement?

00:09:59.220 --> 00:10:05.070
So our data right now are not quite in the advanced stages of having a definitive

00:10:05.070 --> 00:10:07.170
100% proven prescription.

00:10:07.170 --> 00:10:12.010
But the data from our lab that has resulted in cognitive and brain improvements

00:10:12.010 --> 00:10:14.880
largely involved walking at a moderate

00:10:15.400 --> 00:10:19.280
to vigorous intensity, starting very small at 10 minutes per session,

00:10:19.280 --> 00:10:22.590
a couple days a week, moving up to three days a week, and all the way up to

00:10:22.590 --> 00:10:25.750
about 30 minutes of moderate to vigorous exercise.

00:10:26.160 --> 00:10:29.600
Now, the nice thing about that is that aligns really well with the Canadian

00:10:29.600 --> 00:10:34.050
Physical Activity Guidelines for Adults with MS, where our walking intervention

00:10:34.230 --> 00:10:38.470
really mirrors the aerobic prescription that is appropriate for people with MS.

00:10:38.470 --> 00:10:42.130
So those guidelines are publicly available, and they give tips and tricks for

00:10:42.130 --> 00:10:46.170
how to do the exercise, where to do the exercise, and what people need to do

00:10:46.530 --> 00:10:50.470
for general health benefits. But maybe that could extend to cognition and brain health, too.

00:10:52.160 --> 00:10:56.150
At CMSC, you're speaking to an audience of neurologists, nurses,

00:10:56.150 --> 00:10:58.380
physical therapists, and psychologists.

00:10:59.290 --> 00:11:03.220
So if a clinic wants to implement your findings next Monday,

00:11:03.540 --> 00:11:05.780
what's the biggest barrier they need to overcome?

00:11:05.780 --> 00:11:10.530
Is it patient adherence, or is it a lack of standardized cognitive screening,

00:11:10.530 --> 00:11:14.550
something like SDMT, to track progress, or is it something else?

00:11:14.550 --> 00:11:18.660
I think the biggest barrier would be personnel and time, because our interventions

00:11:18.660 --> 00:11:22.460
involve a lot of behavioral support with participants, where participants interact

00:11:22.460 --> 00:11:24.600
with behavior coaches who help teach

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participants with MS the skills and knowledge to change and maintain their exercise

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behavior so that they can reap the benefits.

00:11:31.450 --> 00:11:36.210
Now, if a clinician wants to deliver that on Monday, I'm not sure how they would

00:11:36.210 --> 00:11:37.870
allocate time and personnel

00:11:38.800 --> 00:11:42.340
needed to be able to deliver that behavioral support, especially considering

00:11:42.340 --> 00:11:47.020
that our behaviorists in our trials are really thoroughly trained to

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think quickly on their feet, use supportive accountability mechanisms to help

00:11:53.260 --> 00:11:57.620
when barriers arise and help each individual participant with their specific situation.

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Now, I don't know if those personnel are readily available in clinic. I'm guessing not.

00:12:02.250 --> 00:12:07.270
But the next phase of research for us, one of the next phases involves looking

00:12:07.270 --> 00:12:10.270
at the potential implementation of our programs in clinic, because at the end

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of the day, that's where the magic happens.

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And that is something that we very much need to do if our program truly does work.

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People living with MS who are experiencing cognitive fatigue often find it incredibly

00:12:21.870 --> 00:12:25.470
difficult to motivate themselves to begin an exercise regimen.

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What strategies or behavioral hooks have you found to be effective in helping

00:12:30.700 --> 00:12:34.840
patients overcome that initial barrier so they can stick with the program long

00:12:34.840 --> 00:12:36.350
enough to see those benefits?

00:12:36.640 --> 00:12:40.950
I think the initial part is the hardest, for sure, especially when you're feeling fatigued.

00:12:41.720 --> 00:12:43.790
One of the things that you can keep in the back of your mind,

00:12:43.790 --> 00:12:48.940
though, is that of all the outcomes studied in response to exercise in terms

00:12:48.940 --> 00:12:52.840
of the benefits, the single most well-established one is that exercise reduces

00:12:52.840 --> 00:12:54.300
fatigue in people with MS.

00:12:54.660 --> 00:12:58.080
And it's to the effect of about a half a standard deviation in magnitude,

00:12:58.420 --> 00:13:02.120
which has been shown in the literature to be universally remarkable.

00:13:02.640 --> 00:13:07.870
Half standard deviation is a big deal. So that is one thing you can keep in

00:13:07.870 --> 00:13:10.450
the back of your mind. But in the front of your mind, it starts small.

00:13:10.890 --> 00:13:14.100
It's every little bit is like saving a little bit of money in the bank.

00:13:14.100 --> 00:13:17.890
And over time it grows and you have to listen to your body on some off days.

00:13:18.140 --> 00:13:21.700
You don't need to go to the gym and exercise vigorously for an hour,

00:13:22.000 --> 00:13:26.930
starting small, sitting less, moving more and slowly accumulating more and more

00:13:26.930 --> 00:13:31.490
exercise over the long haul. It's, it's a marathon, not a sprint. Pardon the pun.

00:13:32.170 --> 00:13:35.750
Well, Dr. Brian Sandroff, thank you for all you do to improve the lives of people

00:13:35.750 --> 00:13:38.690
who are Living with MS. Thanks so much for talking with me today.

00:13:38.690 --> 00:13:40.500
Of course, and thank you for all you do as well.

00:13:41.910 --> 00:13:46.160
Dr. Brad Willingham is a director of the Multiple Sclerosis Research Program

00:13:46.160 --> 00:13:47.920
at the Shepherd Center in Atlanta.

00:13:48.540 --> 00:13:53.230
I began my conversation with Dr. Willingham by asking him how that continuous

00:13:53.230 --> 00:13:56.610
stream of data that a wearable device produces

00:13:56.990 --> 00:14:02.250
can be synthesized into actionable information that a clinician can put to use

00:14:02.350 --> 00:14:03.900
when their patient is in front of them.

00:14:04.510 --> 00:14:07.760
In a moment, will hear my conversation with Dr. Willingham.

00:14:14.330 --> 00:14:18.230
Every day, there's a new device generating new streams of data,

00:14:18.230 --> 00:14:20.620
and the resolution is getting greater and greater.

00:14:20.890 --> 00:14:23.850
Continuous data streams, millions of data points coming in.

00:14:24.330 --> 00:14:27.750
But how do we make sense of it? How do we extract data from that?

00:14:27.750 --> 00:14:32.080
Well, fortunately, that's exactly what AI is good at. And specifically,

00:14:32.080 --> 00:14:38.070
generative AI, large language model technology, it excels at ingesting large

00:14:38.070 --> 00:14:41.160
amounts of information from very different sources,

00:14:41.770 --> 00:14:45.620
And assimilating it, synthesizing it, and summarizing it.

00:14:46.080 --> 00:14:50.610
And so by applying that to monitoring data sources in the clinic,

00:14:51.050 --> 00:14:54.730
we can now realize the full potential of these technologies. Because they are.

00:14:55.000 --> 00:15:01.380
They're giving us unprecedented insight into the needs and progress and abilities of patients.

00:15:01.840 --> 00:15:06.110
But how do we realize that potential? Well, we need some help synthesizing it.

00:15:06.110 --> 00:15:07.450
And that's what AI can do.

00:15:07.790 --> 00:15:13.370
So if you think about converting millions of data points into a brief,

00:15:13.370 --> 00:15:19.410
succinct paragraph of what a clinician needs to do, then we have a way to integrate it into workflow.

00:15:19.970 --> 00:15:26.080
So that AI tool, if you will, is sort of serving as middleware between the millions

00:15:26.080 --> 00:15:28.970
of data points and that one succinct paragraph.

00:15:29.340 --> 00:15:35.570
Absolutely. But a key to that is informing the middleware with clinical perspective

00:15:35.570 --> 00:15:36.790
and patient perspective.

00:15:37.090 --> 00:15:40.350
And so when we think about translating innovation into impact,

00:15:40.860 --> 00:15:46.270
it's critical to engage the patients and the clinicians early and often so that

00:15:46.270 --> 00:15:49.480
we can design system prompts or tailored AI

00:15:50.110 --> 00:15:54.900
so that the summaries that it's generating and the synthesis that it's performing

00:15:55.120 --> 00:15:57.160
is relevant to the objective, right?

00:15:57.160 --> 00:16:01.400
So interviewing patients, interviewing clinicians, what's important to you in

00:16:01.400 --> 00:16:06.030
this data, what can inform your decisions and empower you, and then making sure

00:16:06.030 --> 00:16:10.150
the AI is focused on that part of the information and providing

00:16:10.930 --> 00:16:13.190
and prioritizing that piece of information.

00:16:13.440 --> 00:16:17.110
I'm going to circle back to that in just a moment. I wanted to ask you,

00:16:17.110 --> 00:16:21.980
when you're designing an AI-enabled decision support tool for MS rehabilitation,

00:16:22.600 --> 00:16:27.810
Given how wildly unpredictable and individualized MS symptoms can be,

00:16:28.190 --> 00:16:33.040
how do you train the system to replicate or enhance a human clinician's reasoning?

00:16:33.260 --> 00:16:38.470
That is where the clinician in the loop and the patient in the loop strategies become key.

00:16:38.930 --> 00:16:45.630
So the AI, it excels again at ingesting large amounts of information and extracting

00:16:45.630 --> 00:16:47.450
key points. Is there an anomaly?

00:16:47.780 --> 00:16:51.000
Was there a change two weeks ago, a week ago? Is there a trend?

00:16:51.030 --> 00:16:55.730
And, but then to your point, to actually make that clinically actionable,

00:16:56.050 --> 00:16:59.730
to personalize it within the context of that individual patient's journey,

00:17:00.210 --> 00:17:03.420
that's where it becomes critical to have the patient in the loop,

00:17:03.420 --> 00:17:08.030
clinician in the loop models, where the AI is summarizing and synthesizing the

00:17:08.030 --> 00:17:13.080
data, but then it's clinical decision support, not clinical decision making, right?

00:17:13.340 --> 00:17:16.560
And so I think the patient and clinician in the loop model is really the key

00:17:16.560 --> 00:17:17.750
to that personalization.

00:17:18.690 --> 00:17:22.490
I've heard you talk about the six domains of clinical decision support.

00:17:23.050 --> 00:17:26.790
Which of these domains do you think is the most important or perhaps the most

00:17:26.790 --> 00:17:30.710
difficult to get right when managing progressive forms of MS?

00:17:31.020 --> 00:17:38.360
So when you think about progressive MS and the large timescales at which data must be considered,

00:17:39.690 --> 00:17:44.430
one of the things that's going to become critical is creating care models that

00:17:44.430 --> 00:17:46.820
are predictive and proactive.

00:17:47.170 --> 00:17:52.670
And so by getting data streams over long periods of time and then creating predictive

00:17:52.670 --> 00:17:56.740
models that can then cue a, you know, there might be a change in function,

00:17:57.040 --> 00:17:58.660
there might be a disease progression.

00:17:59.070 --> 00:18:03.700
I think that piece, so that's going to fall in the practice of medicine domain, right?

00:18:04.490 --> 00:18:10.650
I think that piece may be a priority there is using the AI to make medicine

00:18:10.950 --> 00:18:13.390
more proactive, predictive, and personalized.

00:18:14.680 --> 00:18:20.840
Traditional clinical metrics like the EDSS or an occasional in-office walking

00:18:20.840 --> 00:18:24.550
test can only capture a brief snapshot of a patient's status.

00:18:25.390 --> 00:18:29.970
As you alluded to just a few minutes ago, people with MS can often experience

00:18:29.970 --> 00:18:34.980
significant day-to-day fluctuations in mobility, cognitive fatigue, and energy.

00:18:35.600 --> 00:18:41.250
Using wearable sensors, how can tailored remote monitoring systems capture some

00:18:41.250 --> 00:18:43.800
of these invisible symptoms like fatigue?

00:18:44.220 --> 00:18:48.780
Absolutely. So you hit it on the head. We have phenomenal measurements in the

00:18:48.780 --> 00:18:55.280
clinic that can get very detailed, rigorous, quantitative information about

00:18:55.280 --> 00:18:57.450
an individual's status and their symptoms.

00:18:58.180 --> 00:19:01.710
But most of the time, that only applies to a snapshot of the here and now.

00:19:02.540 --> 00:19:07.020
Whereas, as you point out, folks living with MS experience day-to-day variability

00:19:08.430 --> 00:19:12.240
across all symptoms, mobility, impairment, fatigue, depression,

00:19:12.240 --> 00:19:14.760
anxiety, pain, sleep, etc.

00:19:15.450 --> 00:19:20.140
So, two things. One, the in-clinic measurements, they're incapable of capturing

00:19:20.140 --> 00:19:24.130
that variability. So, it's difficult to detect the signal and the noise when

00:19:24.130 --> 00:19:25.840
you have a measurement every six months.

00:19:26.140 --> 00:19:27.910
Is that the signal or is that the noise?

00:19:28.180 --> 00:19:31.980
Well, and how much does that even change, whether that appointment is 9 o'clock

00:19:31.980 --> 00:19:34.170
in the morning or 4 o'clock in the afternoon?

00:19:34.170 --> 00:19:38.220
Absolutely. The dineural component, too, not just day-to-day,

00:19:38.220 --> 00:19:43.950
but time of day, relationship to medications and other lifestyle factors. Absolutely.

00:19:44.290 --> 00:19:47.560
And so by getting that continuous data stream, you can then start to identify

00:19:47.560 --> 00:19:48.610
the signal and the noise.

00:19:48.990 --> 00:19:52.570
The other piece kind of in the health care component, too, is it removes the

00:19:52.570 --> 00:19:55.780
burden of having to recall.

00:19:57.360 --> 00:20:01.890
Oh, you experienced an increase in fatigue. When was that? Two weeks ago, three days ago?

00:20:02.170 --> 00:20:06.120
Have you experienced a decline in mobility? Well, you know, so removing that

00:20:06.120 --> 00:20:10.250
burden on the patient to having to always recall and recall with such high stakes

00:20:10.250 --> 00:20:14.590
and accuracy, if you have the wearable data streaming in, you have it automatically

00:20:14.590 --> 00:20:15.840
captured and quantified.

00:20:16.070 --> 00:20:19.670
And then you can refer to it and it had a really data-driven discussion.

00:20:20.480 --> 00:20:25.370
How do you ensure the wearable technology itself remains accessible and user-friendly

00:20:25.370 --> 00:20:30.700
for individuals who might be dealing with significant manual dexterity or visual challenges?

00:20:32.140 --> 00:20:38.520
So two things. One, this is, as I alluded to earlier, making technologies accessible,

00:20:38.520 --> 00:20:43.510
practical, able to integrate into workflows and usable during everyday life.

00:20:43.660 --> 00:20:47.920
That can only be achieved if we engage patients and clinicians early enough

00:20:47.920 --> 00:20:50.290
in the development process. Okay, identify the problem.

00:20:50.850 --> 00:20:54.480
But then test the prototype iteratively, you know, identify the barriers,

00:20:54.480 --> 00:20:57.720
identify the accessibility challenges, refine the prototype.

00:20:58.380 --> 00:21:01.660
That way, by the time you get to a product that you're ready to test in the

00:21:01.660 --> 00:21:04.530
real world, it's already been informed and tested.

00:21:04.780 --> 00:21:08.960
And so it has a chance to be more accessible and valid in the real world.

00:21:09.560 --> 00:21:13.610
The other thing, too, is tailored solutions. As we know, MS affects,

00:21:14.540 --> 00:21:17.760
has a cascading effect throughout the body and affects multiple,

00:21:17.760 --> 00:21:20.310
multiple systems with a wide range of different symptoms.

00:21:20.570 --> 00:21:26.350
And so also providing remote sensing strategies that are relevant to that individual as well.

00:21:27.700 --> 00:21:31.930
You know, to your point, the Shepard Center is famous for its unique culture

00:21:31.930 --> 00:21:36.720
where researchers are heavily integrated directly into clinical spaces rather

00:21:36.720 --> 00:21:38.160
than isolated in their lab.

00:21:38.830 --> 00:21:43.750
You hold knowledge translation meetings with both clinicians and people living

00:21:43.750 --> 00:21:46.230
with MS to design your studies from the ground up.

00:21:46.900 --> 00:21:52.140
Can you think of a specific piece of feedback or a barrier raised by a patient

00:21:52.140 --> 00:21:57.660
or physical therapist that might have changed how you approached a remote monitoring technology?

00:21:57.920 --> 00:22:05.120
Oh, absolutely. Our entire line of research surrounding sensor-infused textiles,

00:22:05.500 --> 00:22:10.070
so smart socks, smart wheelchair cushions, that actually precipitated out of

00:22:10.070 --> 00:22:11.690
a knowledge translation discussion

00:22:12.680 --> 00:22:17.390
because traditionally our work had explored the application of wrist-worn wearables,

00:22:17.550 --> 00:22:21.620
which are extremely valuable in evaluating cardiac function,

00:22:23.340 --> 00:22:24.770
circadian rhythms, things like this.

00:22:25.150 --> 00:22:26.610
However, when it comes to activity,

00:22:27.600 --> 00:22:31.080
those measurements are measuring activity and steps at the wrist.

00:22:31.840 --> 00:22:36.420
So if someone is using an assisted device, such as bilateral trucking poles

00:22:36.420 --> 00:22:41.630
or rollator, it may limit upper extremity oscillations, and therefore their

00:22:41.630 --> 00:22:45.450
activity counts will not be reflected by that measurement. They won't be captured.

00:22:45.720 --> 00:22:50.760
And so that discussion actually led us to explore other ways to more accurately

00:22:50.760 --> 00:22:54.100
quantify activity and folks who may be using assisted devices,

00:22:54.100 --> 00:22:58.480
which ultimately led us to our work around sensor-infused smart SOCs to evaluate

00:22:58.480 --> 00:22:59.840
gait and physical activity.

00:23:00.430 --> 00:23:04.600
Well, you just solved a mystery for me. I wondered what the story was behind

00:23:04.600 --> 00:23:07.940
those smart socks, but boy, that makes so much sense.

00:23:08.530 --> 00:23:13.410
A major hurdle with home-based remote monitoring is long-term patient adherence.

00:23:13.530 --> 00:23:18.090
Once the initial novelty of a wearable device wears off, what strategies have

00:23:18.090 --> 00:23:23.300
you found effective for keeping patients engaged in tracking their data over long periods of time?

00:23:23.870 --> 00:23:27.320
Traditionally, we have deployed a cadence of virtual check-ins,

00:23:27.320 --> 00:23:32.500
right? And so setting up kind of those synchronous telehealth discussions via,

00:23:32.500 --> 00:23:36.310
you know, telecommunications, video conferencing platform.

00:23:37.020 --> 00:23:41.460
However, this is a good opportunity. And that's effective by having conversations. How's it going?

00:23:41.750 --> 00:23:45.010
Are you wearing your device? Are there any challenges with it? Very effective.

00:23:45.270 --> 00:23:49.110
But I see this also as an opportunity. We talked early about patient in the

00:23:49.110 --> 00:23:52.380
loop, clinician in the loop being, you know, critical, especially in MS care

00:23:52.380 --> 00:23:53.150
where it's very nuanced.

00:23:53.410 --> 00:23:58.130
However, in this case, I do see this as an opportunity for agentic AI where

00:23:58.130 --> 00:24:00.980
there is not a patient in the loop or a clinician in the loop.

00:24:01.240 --> 00:24:04.770
And we can have those kind of automated reminders. Hey, it looks like you haven't

00:24:04.770 --> 00:24:06.840
worn your wearable in three days. Is everything OK?

00:24:07.260 --> 00:24:10.920
Is the technology working? And then the agentic solution can actually troubleshoot

00:24:10.920 --> 00:24:14.620
that for them as well, based on using retrieval augment generation where the

00:24:14.620 --> 00:24:16.370
AI is referencing the user manual.

00:24:16.940 --> 00:24:18.650
So your bot can call my bot.

00:24:18.930 --> 00:24:19.340
Correct.

00:24:21.240 --> 00:24:23.830
You know, as you and I have talked about in past conversations,

00:24:23.830 --> 00:24:28.480
we're in the very, very early stages of what's going to be a massive paradigm

00:24:28.480 --> 00:24:30.720
shift in how AI impacts health care.

00:24:31.600 --> 00:24:34.430
I'll let you get your crystal ball out and look ahead five years.

00:24:35.050 --> 00:24:39.320
How do you envision AI changing the daily workflow of physical and occupational

00:24:39.320 --> 00:24:41.410
therapists who specialize in MS care?

00:24:42.500 --> 00:24:46.420
A deeper understanding of what's going on outside the clinic.

00:24:47.420 --> 00:24:52.580
We have such important interactions that occur in the clinic with our therapist and our provider team.

00:24:53.440 --> 00:24:59.710
But again, it's difficult for patients to communicate how MS is impacting their

00:24:59.710 --> 00:25:01.000
everyday life activities.

00:25:01.000 --> 00:25:06.200
And it's difficult for providers to understand that despite increasing emphasis

00:25:06.200 --> 00:25:07.980
on the patient-doctor interaction,

00:25:09.420 --> 00:25:14.140
We need a deeper quantitative understanding of that And I think some of these

00:25:14.140 --> 00:25:20.430
wearable sensing technologies Once we figure out the piece of ingesting it And

00:25:20.430 --> 00:25:23.450
making it interpretable and summarizing it with AI

00:25:24.060 --> 00:25:28.130
I think we're then again going to get to fully harness The power of remote sensing

00:25:28.130 --> 00:25:30.440
technologies And clinicians are going to get

00:25:30.820 --> 00:25:35.830
such a better understanding Of what is going on in each patient's everyday life

00:25:35.830 --> 00:25:40.550
Again, the day-to-day changes how it's impacting their lifestyle activities,

00:25:40.550 --> 00:25:42.520
their obligations, their vocations.

00:25:42.890 --> 00:25:50.050
So I think there really is the patient-clinician interaction is really going to start

00:25:50.920 --> 00:25:55.670
focusing more on what's going on at home, and treatments may be able to be more

00:25:55.670 --> 00:25:59.790
tailored to achieving goals that are relevant to outside the clinic,

00:26:00.090 --> 00:26:03.630
rather than standard clinical benchmarks, such as a timed walk test.

00:26:04.530 --> 00:26:07.980
Well, Dr. Brad Willingham, I want to thank you for the important work you do

00:26:08.300 --> 00:26:11.640
in ushering in the next generation of MS care.

00:26:11.980 --> 00:26:14.290
And I want to thank you so much for talking with me today.

00:26:14.540 --> 00:26:16.820
Likewise, John. Thank you for all you do for the community.

00:26:18.400 --> 00:26:23.820
Dr. Laura Rice is an associate professor of health and kinesiology and the assistant

00:26:23.820 --> 00:26:28.680
director of the Center on Health, Aging, and Disability at the University of Illinois.

00:26:29.220 --> 00:26:35.760
Dr. Rice is an expert on assistive technology, disability and wheelchair use, and fall prevention.

00:26:36.540 --> 00:26:41.050
Dr. Rice and I discussed how individuals with MS who rely on a wheelchair for

00:26:41.050 --> 00:26:44.410
mobility can still exercise safely.

00:26:45.040 --> 00:26:47.300
In a moment, you'll hear our conversation.

00:26:52.430 --> 00:26:56.340
Exercise delivers measurable benefits for everyone living with MS,

00:26:56.700 --> 00:27:00.720
including those people living with MS who rely on a wheelchair for mobility.

00:27:01.270 --> 00:27:05.280
So this conversation isn't strictly about exercising in a wheelchair.

00:27:05.680 --> 00:27:08.410
It's about exercising safely in a wheelchair.

00:27:09.090 --> 00:27:14.730
Joining me today to talk about exercise for people with MS who use wheelchairs is Dr. Laura Rice.

00:27:15.220 --> 00:27:19.600
Dr. Rice is an associate professor of health and kinesiology and the assistant

00:27:19.600 --> 00:27:24.000
director of the Center on Health, Aging, and Disability at the University of Illinois.

00:27:24.490 --> 00:27:30.580
And she's an expert on assistive technology, disability and wheelchair use, and fall prevention.

00:27:31.280 --> 00:27:33.060
Welcome to the podcast, Dr. Rice.

00:27:33.740 --> 00:27:35.400
Thank you so much for having me today.

00:27:35.980 --> 00:27:41.280
What would you say is the biggest misconception that the general fitness community

00:27:41.280 --> 00:27:47.040
and even some clinicians have about exercise for non-ambulatory MS patients.

00:27:48.130 --> 00:27:52.530
Sure. Thank you so much for this question. I just think, actually,

00:27:52.640 --> 00:27:55.050
to even go a little bit more general,

00:27:55.750 --> 00:27:59.780
I think a lot of people think that for people living with MS,

00:27:59.780 --> 00:28:03.930
once they start using a wheelchair, it's kind of the end of the line.

00:28:03.930 --> 00:28:09.960
And you really can't do anything and there's, you know, not a lot of options available.

00:28:09.960 --> 00:28:16.550
But there's so many options available and it's really important that clinicians,

00:28:17.350 --> 00:28:22.210
that people who use wheelchairs living with MS, really start to consider that

00:28:22.690 --> 00:28:24.580
there's so many resources out there.

00:28:24.580 --> 00:28:27.360
There's so many things that people can do.

00:28:27.610 --> 00:28:31.380
And exercise is a critically important piece of this puzzle.

00:28:31.700 --> 00:28:37.550
Staying fit, staying strong, is really important for people to help maximize

00:28:37.550 --> 00:28:39.360
their use of their wheelchair.

00:28:39.660 --> 00:28:44.330
And most importantly, so that they can continue to do the activities that they

00:28:44.330 --> 00:28:48.140
enjoy both in their home and then in their community as well.

00:28:48.830 --> 00:28:54.250
Well, as you point out, there are plenty of people who are living with MS who,

00:28:54.870 --> 00:28:59.900
don't necessarily know that exercise once you're using a wheelchair is even an option.

00:28:59.900 --> 00:29:04.740
And I'm thinking those people may have already spent some considerable time

00:29:05.110 --> 00:29:07.630
leading a sedentary kind of lifestyle.

00:29:08.210 --> 00:29:13.750
So is there a specific starting dose of exercise you'd recommend for someone

00:29:13.750 --> 00:29:17.990
who has been sedentary and uses either a manual or power chair?

00:29:18.720 --> 00:29:25.600
Sure. I would encourage people to start by talking to their doctor or a therapist.

00:29:25.600 --> 00:29:31.020
It is good to just kind of check in with these healthcare professionals to make

00:29:31.020 --> 00:29:34.150
sure that you are safe to exercise.

00:29:34.490 --> 00:29:39.340
However, once you kind of do that check-in, you might want to talk to a physical

00:29:39.340 --> 00:29:42.350
therapist. They could help you start to get a program going.

00:29:42.640 --> 00:29:47.720
But really, you can start simple. You don't have to do anything super fancy.

00:29:48.100 --> 00:29:51.300
You know, first thing you can do is just sitting in your wheelchair,

00:29:51.570 --> 00:29:56.010
starting to do some marching, kind of lifting your knees up and down one at

00:29:56.010 --> 00:29:58.910
a time, kicking your leg out straight.

00:29:59.310 --> 00:30:04.390
If doing each of those exercises 10 times makes you feel tired,

00:30:04.890 --> 00:30:07.450
then great. That is a great place to start.

00:30:08.270 --> 00:30:12.250
You know, even just a little bit of movement is wonderful.

00:30:13.050 --> 00:30:18.100
So you do not have to start in a really intense program in any way, shape, or form.

00:30:18.370 --> 00:30:25.270
Just try to do a few small things each day, and then you can build up to a bigger program.

00:30:26.260 --> 00:30:29.600
I know you've done extensive research on fall prevention.

00:30:29.920 --> 00:30:34.840
What are the most common ways wheelchair users injure themselves during exercise?

00:30:34.840 --> 00:30:38.010
And I guess most importantly, how can they be avoided?

00:30:39.110 --> 00:30:43.500
Sure. So during exercise, I think the biggest thing is overuse.

00:30:43.500 --> 00:30:45.520
People are trying to maybe push

00:30:45.520 --> 00:30:50.230
themselves a little bit too hard and especially their upper extremity.

00:30:50.230 --> 00:30:55.590
We need to be very careful, very protective of especially those shoulders because

00:30:55.950 --> 00:31:00.940
people are using their shoulders for all their activities of daily living.

00:31:01.150 --> 00:31:05.540
So that's the thing I see people injuring themselves the most,

00:31:05.830 --> 00:31:10.370
trying to do too much, maybe using weights that are perhaps too heavy

00:31:11.110 --> 00:31:16.610
and developing shoulder pain because exercises plus all your other activities

00:31:16.610 --> 00:31:19.900
of daily living put a lot of stress on those shoulders.

00:31:20.160 --> 00:31:23.570
So paying attention to how your shoulders are feeling.

00:31:23.810 --> 00:31:27.450
Your wrists and your elbows are also important, but it's usually the shoulders

00:31:27.450 --> 00:31:30.270
that we start to see the problems with first.

00:31:30.650 --> 00:31:35.340
So paying attention to how you're feeling and adjusting your activity based

00:31:35.340 --> 00:31:37.320
on that is really important.

00:31:37.820 --> 00:31:44.370
So are there specific things those wheelchair users can do to exercise their

00:31:44.370 --> 00:31:48.410
upper bodies without risking those strain or overuse injuries?

00:31:49.200 --> 00:31:54.750
Yeah, absolutely. So, you know, starting with a low number of reps,

00:31:55.610 --> 00:32:03.650
doing just, again, kind of listening to your body and doing everything within your comfort level.

00:32:04.710 --> 00:32:08.250
I would recommend starting out without any weights.

00:32:08.950 --> 00:32:16.030
Just move your different joints in different ways that feel comfortable to you.

00:32:16.630 --> 00:32:21.550
Also making sure that you're having good posture when you are exercising.

00:32:21.870 --> 00:32:25.880
We want to make sure that we're kind of sitting up in a straight position.

00:32:26.160 --> 00:32:33.290
That way our bodies can move in the way that they are intended and most effective to move.

00:32:34.310 --> 00:32:39.210
Kind of slumping over especially can put our shoulders in an awkward position

00:32:39.210 --> 00:32:41.700
that can cause additional problems.

00:32:42.000 --> 00:32:45.740
So staying in a good posture is very important.

00:32:46.810 --> 00:32:51.770
So, yeah, I guess kind of takeaway message, start either with very,

00:32:51.770 --> 00:32:57.070
very light weights or no weight at all, just trying to move your extremity and

00:32:57.070 --> 00:32:59.340
paying attention to your posture as well.

00:33:00.130 --> 00:33:03.290
We know heat sensitivity is a major factor in MS.

00:33:03.730 --> 00:33:08.720
What specific cooling strategies do you recommend for wheelchair users to prevent

00:33:08.720 --> 00:33:10.810
Utoff's phenomenon during a workout?

00:33:11.640 --> 00:33:16.130
Sure. Yeah. So making, number one, making sure that you're paying attention

00:33:16.130 --> 00:33:18.720
to what clothing that you're wearing.

00:33:18.960 --> 00:33:22.510
You don't want to wear a lot of heavy clothes while you're exercising.

00:33:22.510 --> 00:33:25.650
Light, breathable materials are key.

00:33:26.110 --> 00:33:30.590
Paying attention to your environment as well, making sure that you're in a room

00:33:31.070 --> 00:33:35.770
that's not too hot. Maybe have a fan with you. That will help quite a bit.

00:33:36.610 --> 00:33:42.970
Using a cooling towel, keeping that close to you would be really helpful as well.

00:33:43.230 --> 00:33:48.400
And also making sure that you hydrate effectively during exercise.

00:33:48.740 --> 00:33:53.300
That will keep your body running in the way that it should.

00:33:54.340 --> 00:33:59.240
For listeners who may not have access to a specialized adaptive gym,

00:33:59.610 --> 00:34:05.210
are there common household items or DIY modifications that can make standard

00:34:05.210 --> 00:34:07.480
exercise equipment safer for them?

00:34:08.220 --> 00:34:12.800
Sure. Yeah, absolutely. So I will first off say that there are a lot of programs

00:34:12.800 --> 00:34:20.000
out there that you really don't need any equipment and also are free to access.

00:34:20.280 --> 00:34:26.580
So, for example, there's several seated Tai Chi programs that are available

00:34:26.580 --> 00:34:30.410
that a lot of people that I've talked to really, really enjoy.

00:34:31.060 --> 00:34:34.640
You don't need any equipment. You can stay seated in your wheelchair.

00:34:34.640 --> 00:34:39.620
There's also free options online that you can follow along with an instructor.

00:34:39.900 --> 00:34:42.650
So you actually don't need any equipment at all.

00:34:43.300 --> 00:34:49.220
However, if you do want to use some weights, yeah, there's plenty of things

00:34:49.740 --> 00:34:51.330
that you can use at your home.

00:34:51.630 --> 00:34:57.750
Usually for hand weights, I encourage people to use just a water bottle.

00:34:58.400 --> 00:34:59.970
It's pretty easy to grip.

00:35:00.660 --> 00:35:07.460
You can also adjust in pretty easily by pouring out some water or adding some more water in to get

00:35:09.680 --> 00:35:12.740
The weight that works well for you

00:35:14.130 --> 00:35:21.020
For lower extremity exercise, this is something that you would have to buy, but

00:35:21.610 --> 00:35:26.510
just some light weights that you can Velcro around your ankles if you want to

00:35:26.510 --> 00:35:31.990
give more resistance to maybe if you're kicking your legs out or lifting them up, doing a marching.

00:35:32.970 --> 00:35:40.070
Those items are pretty inexpensive and you can usually get them at you know

00:35:40.070 --> 00:35:44.370
through some online retailers or just at like a local

00:35:45.950 --> 00:35:52.970
you know kind of big box store so those things are pretty easily accessible to most people

00:35:54.290 --> 00:35:58.520
you know other suggestions at your home just kind of think about different surfaces

00:35:58.520 --> 00:36:01.100
that might be good for you to sit on as well.

00:36:02.150 --> 00:36:06.200
Sitting on the edge of the bed can be helpful if you want to get out of your wheelchair.

00:36:07.050 --> 00:36:10.830
So just looking around your home and thinking about what can be used,

00:36:11.330 --> 00:36:13.110
a lot of times you'll see some great things.

00:36:14.000 --> 00:36:18.350
When a wheelchair user is engaged in high-intensity seated exercise,

00:36:18.580 --> 00:36:22.560
what should they be mindful of regarding skin integrity and pressure sores.

00:36:23.380 --> 00:36:29.140
Yeah. So kind of starting off to making sure that you're setting yourself up

00:36:29.140 --> 00:36:31.060
for success is really important.

00:36:32.130 --> 00:36:37.550
You want to make sure that your cushion that you're sitting on is of good quality.

00:36:37.800 --> 00:36:42.010
That's really matched to you to make sure that it's giving the pressure relieving

00:36:42.010 --> 00:36:44.770
qualities that you particularly need.

00:36:45.550 --> 00:36:52.690
Same thing with the back support and that is important if you're exercising or not exercising.

00:36:53.830 --> 00:36:57.500
However, when you do start exercising, you do want to make sure that you're

00:36:57.500 --> 00:37:01.580
in a secure position, making sure that you're not sliding around your chair

00:37:01.580 --> 00:37:05.670
too much because that would be the biggest thing causing some sheer forces

00:37:06.270 --> 00:37:10.050
when you're exercising that could lead to a skin breakdown.

00:37:11.220 --> 00:37:15.550
If you're pretty stable while you're seated, you have a good cushion,

00:37:16.640 --> 00:37:21.600
you should be in pretty good shape. Again, with anybody, I encourage people

00:37:21.600 --> 00:37:24.420
to make sure they're doing pressure reliefs.

00:37:25.000 --> 00:37:28.470
If you use a manual wheelchair, kind of doing a manual pressure relief.

00:37:28.830 --> 00:37:33.350
If you use a power wheelchair and have tilt and recline, using those features

00:37:33.350 --> 00:37:38.560
to do a pressure relief about every 15 minutes. And also doing skin checks.

00:37:39.200 --> 00:37:44.730
And if you're particularly concerned after exercising, maybe get out of your wheelchair,

00:37:45.490 --> 00:37:49.480
either if you do your skin checks yourself to see if you have any redness or

00:37:49.480 --> 00:37:55.160
skin breakdown on your sitting surface, or have a care partner come and help you with that as well.

00:37:57.160 --> 00:38:02.880
That's the best protocol to make sure that you're not developing any problems.

00:38:03.630 --> 00:38:08.930
For a wheelchair user with MS, how can they distinguish between what I'll call

00:38:08.930 --> 00:38:13.460
good exercise fatigue and an MS-related fatigue flare-up?

00:38:14.390 --> 00:38:20.480
Yeah, I think, you know, you just need to pay attention to your body and be

00:38:20.480 --> 00:38:25.120
aware of what kind of good exercise response is.

00:38:25.830 --> 00:38:29.980
It is very typical, especially if you're doing kind of some strength training

00:38:30.260 --> 00:38:33.490
that, you know, the day about,

00:38:34.660 --> 00:38:40.780
you know, a couple hours after you stop exercising, maybe even into the next

00:38:40.780 --> 00:38:44.190
day, you are going to have some muscle soreness.

00:38:44.190 --> 00:38:49.940
You might feel some fatigue as well, but this should go away pretty quickly.

00:38:49.940 --> 00:38:54.530
So if you're exercising on Monday morning, Tuesday morning, you might feel a

00:38:54.530 --> 00:38:56.480
little bit sore and fatigued.

00:38:56.750 --> 00:39:01.380
That's okay. But if it doesn't start to go away by kind of Tuesday afternoon,

00:39:01.740 --> 00:39:04.500
that's maybe something that you want to think, You know, okay,

00:39:04.500 --> 00:39:11.440
this isn't just normal and, you know, seek out some resources to make sure that you're staying safe.

00:39:12.160 --> 00:39:17.250
When is it safe to exercise alone? And at what point should a wheelchair user

00:39:17.250 --> 00:39:21.340
ensure that they have a caregiver or trainer close by to spot them?

00:39:22.100 --> 00:39:27.220
Sure. Yeah. So I think, you know, it's very individualized depending on the

00:39:27.220 --> 00:39:29.790
specific person and their balance.

00:39:31.500 --> 00:39:36.500
I when I encourage people, talk to people about exercising,

00:39:37.060 --> 00:39:43.480
I do encourage to have maybe a care partner close by just to make sure that

00:39:43.480 --> 00:39:49.710
if you do fall or you can or somebody could help prevent a fall if one kind of starts to happen.

00:39:50.960 --> 00:39:57.260
However, if you feel pretty stable in your wheelchair, doing some seated exercises

00:39:57.260 --> 00:39:59.200
without a care partner present

00:40:01.460 --> 00:40:04.800
Is probably okay. But you need to really know yourself.

00:40:05.560 --> 00:40:09.910
Do you, you know, some things to consider. Certainly you're balanced.

00:40:09.910 --> 00:40:16.120
Do you feel stable in whatever surface you're on doing those exercises?

00:40:16.500 --> 00:40:19.500
And then also your response to exercise.

00:40:21.300 --> 00:40:28.040
Do you typically respond okay to exercise or do you have some flare-ups or some problems?

00:40:28.960 --> 00:40:34.300
If you feel pretty confident that things have, and certainly don't exercise

00:40:34.740 --> 00:40:40.290
by yourself for the first time either, you know, do a couple exercise routines

00:40:40.290 --> 00:40:42.730
with a care partner present

00:40:43.440 --> 00:40:45.990
just to see how you're going to react.

00:40:46.870 --> 00:40:50.050
If you've done it, if you've done this a couple of times and things have gone

00:40:50.050 --> 00:40:55.850
pretty smoothly, then I think it would be okay. You know, you can use your judgment,

00:40:56.130 --> 00:40:59.430
but, you know, make sure you take some other precautions, too.

00:40:59.990 --> 00:41:03.590
Make sure that you have your phone close by, that if something does come up,

00:41:03.880 --> 00:41:07.780
you can very quickly call somebody and get some assistance.

00:41:08.090 --> 00:41:12.650
Also, again, making sure that you're hydrating throughout your exercise routine

00:41:13.470 --> 00:41:18.130
so that you don't get overheated, that you don't, you know, start to have some

00:41:18.130 --> 00:41:20.470
trouble. So just be smart about it.

00:41:21.440 --> 00:41:27.950
Get to know your body and how you react to exercise and kind of go from there

00:41:27.950 --> 00:41:33.430
and make an informed choice if you feel comfortable exercising or not.

00:41:34.510 --> 00:41:39.000
People who rely on a wheelchair for mobility, as well as people who are dealing

00:41:39.000 --> 00:41:42.800
with balance issues, often have a pronounced fear of falling.

00:41:43.810 --> 00:41:48.830
How does that psychological barrier keep them from even attempting exercise,

00:41:49.120 --> 00:41:52.160
and how can they go about developing the confidence to move forward?

00:41:53.220 --> 00:41:59.660
Sure, yeah. So fear of falling is very common among people living with MS who use wheelchairs.

00:41:59.980 --> 00:42:06.800
Our research has found that upwards of 75% of people report a fear or concerns

00:42:06.800 --> 00:42:11.090
about falling during their daily activities.

00:42:11.700 --> 00:42:17.580
And this can be very detrimental because once people start to develop this concern,

00:42:17.800 --> 00:42:23.040
they often are very fearful of doing anything, including exercise.

00:42:23.370 --> 00:42:27.920
And it's oftentimes things that they actually are very capable of doing,

00:42:28.520 --> 00:42:33.870
but that concern prevents them from engaging in those activities.

00:42:34.480 --> 00:42:40.240
And this can really lead to kind of a downward spiral because people aren't

00:42:40.240 --> 00:42:42.770
doing their activities and they're getting weaker.

00:42:42.970 --> 00:42:50.240
And so they actually are increasing their risk of falling or hurting themselves during exercise.

00:42:50.720 --> 00:42:55.950
So, it is very important for people to start to develop the confidence in their

00:42:55.950 --> 00:43:02.770
ability to exercise or honestly do other activities that they find enjoyable.

00:43:03.040 --> 00:43:07.660
I think working with a trusted care partner or a therapist is very important

00:43:07.920 --> 00:43:13.520
where they can have various safety nets so that they can make sure that they're

00:43:13.520 --> 00:43:16.860
doing these things in a safe, effective way.

00:43:17.280 --> 00:43:23.170
They can get feedback from the therapist to make sure they're doing things properly.

00:43:23.560 --> 00:43:26.730
And also putting those different safeguards in place as well.

00:43:26.730 --> 00:43:30.620
Like we talked about having your phone close by, staying hydrated,

00:43:30.950 --> 00:43:37.280
really knowing your body so that you know what to expect during exercise.

00:43:37.590 --> 00:43:43.530
So really making it a team effort with your care partners, with your clinical team,

00:43:44.060 --> 00:43:49.570
talking about what your goals are and working with everybody together so that

00:43:49.570 --> 00:43:54.360
you can build the confidence that you can safely do these different activities.

00:43:55.200 --> 00:44:01.230
I'm a bit of a tech geek, so I have to ask, are there any emerging technologies

00:44:01.230 --> 00:44:02.960
or wearable devices that you're

00:44:02.960 --> 00:44:06.880
particularly excited about for monitoring safety for wheelchair users?

00:44:07.700 --> 00:44:15.050
Yes. So, unfortunately, a lot of the automated fall detection devices that are

00:44:15.050 --> 00:44:19.910
out there on the market don't do a great job with picking up falls

00:44:21.270 --> 00:44:22.750
from a wheelchair.

00:44:23.170 --> 00:44:26.070
So, my research team actually did some testing with

00:44:27.510 --> 00:44:32.410
Kind of a very common smart watch that has fall detection built into it.

00:44:32.700 --> 00:44:37.330
And we found it only picked up about 5% of falls from a wheelchair.

00:44:37.720 --> 00:44:44.040
So my team is actually working to develop a fall detection device that is specific

00:44:44.040 --> 00:44:45.940
to people who use wheelchairs.

00:44:46.580 --> 00:44:50.390
We developed an algorithm that can detect kind of the movement,

00:44:50.390 --> 00:44:55.030
the pattern of fall that typically occurs from a wheelchair.

00:44:55.310 --> 00:45:01.120
And now are working to test that, testing that out to make sure that it is validated.

00:45:02.240 --> 00:45:07.720
So certainly the devices that are on the market, they can be useful.

00:45:08.140 --> 00:45:12.960
Just be aware, though, that they aren't designed to detect falls from a wheelchair.

00:45:13.760 --> 00:45:18.670
So you do have to be careful. I, you know, encourage again and again,

00:45:18.670 --> 00:45:21.790
I keep saying it, but, you know, having your phone close by.

00:45:21.940 --> 00:45:27.040
If you do have a smartwatch that you wear, kind of learn how to use it and so

00:45:27.040 --> 00:45:28.970
that you can contact a person.

00:45:28.970 --> 00:45:33.020
Your phone does have to be, you know, kind of close by to stay connected unless

00:45:33.020 --> 00:45:38.790
you have specific service for the watch or the wearable device.

00:45:39.260 --> 00:45:46.990
But having those things close by and being very, very consistent and making

00:45:46.990 --> 00:45:50.270
sure that you always have it with you. because the one time you forget it,

00:45:50.470 --> 00:45:52.820
that's the time you're going to need it for sure.

00:45:53.070 --> 00:45:57.600
Well, I'm going to take this opportunity right now to invite you back on the

00:45:57.600 --> 00:46:02.860
podcast when the device your team is working on is ready for time time.

00:46:02.860 --> 00:46:04.540
We'd love to have you back to talk about it.

00:46:04.790 --> 00:46:07.820
Sure. Yeah, absolutely. I'd be very happy to talk about it.

00:46:08.380 --> 00:46:12.290
Well, Dr. Laura Rice, I want to thank you for all you do to improve the quality

00:46:12.290 --> 00:46:16.240
of life for people living with MS. And thanks so much for talking with me today.

00:46:17.090 --> 00:46:19.700
Oh, thank you so much for having me. I really appreciate it.

00:46:20.370 --> 00:46:24.980
That's going to wrap up this episode of Real Talk MS. Real Talk MS is powered

00:46:24.980 --> 00:46:26.680
by the National MS Society.

00:46:27.080 --> 00:46:31.490
And you can share this episode of the podcast by letting your friends or family

00:46:31.490 --> 00:46:39.120
members know that all they have to do is point their web browser at realtalkms.com slash 459.

00:46:39.620 --> 00:46:43.840
You'll find that link in today's show notes, so you can easily copy and paste

00:46:43.840 --> 00:46:46.380
it right into an email or a text.

00:46:47.160 --> 00:46:51.320
In next week's episode of Real Talk MS, you're going to meet Matt Knags and Colin

00:46:51.320 --> 00:46:56.380
Goodman, two guys living with MS who somehow decided that it would be a good

00:46:56.380 --> 00:47:00.070
idea to run the entire length of Ireland.

00:47:00.880 --> 00:47:05.050
They're raising MS awareness, they're raising money to fund MS research,

00:47:05.320 --> 00:47:07.340
and they're raising a lot of interest.

00:47:08.080 --> 00:47:12.030
You won't want to miss my conversation with two men with multiple sclerosis

00:47:12.270 --> 00:47:16.360
who are about to embark on what amounts to multiple marathons.

00:47:17.490 --> 00:47:24.030
I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.