Taking the Next Step With Confidence: Navigating Foot Drop and Mobility with MS

Taking the Next Step With Confidence: Navigating Foot Drop and Mobility with MS

Episode 187 – Podcast Transcript

[(0:25)]Stephanie Buxhoeveden:  Welcome to the Can Do MS podcast. I’m your host Stephanie Buxhoeveden. I live with MS and I’m also a clinician and MS researcher. Today we’re joined by Sam Balistreri, a physical therapist who works in acute inpatient rehab and sees lots of patients with neurological conditions, including MS, and Spencer Van Wagenen, a certified Orthotist and prosthetist who works closely with other clinicians and patients to get them the right fit for devices like AFOs and other tools. Hi, Sam. Hi Spencer. Thank you both for being here today.

[(0:55)]Sam Balistreri: Thanks, Stephanie.

[(0:56)]Spencer Van Wagenen: Thank you.

[(0:57)]Stephanie: Let’s start by talking about what foot drop is and breaking down the types of devices that can help out with it.

[(1:03)]Sam: Yeah, so foot drop is when your foot doesn’t lift the way it should when you walk, so your toes might drag or catch, and sometimes it’s the first symptom that folks notice that kind of preclude them that that something might be going on. An AFO is really commonly used to help with foot drop. It stands for ankle foot orthosis, and it’s a brace that helps you hold your foot in the right position so you can walk more safely and easily. Um, FES is something that we might talk about a little bit today as well. That stands for Functional Electrical Stimulation, and this is a device that uses electrical pulses to help activate the muscles that lift your foot. Um, but Spencer is, um, an orthotist and usually you, I mean, correct me if I’m wrong, Spencer, but I’m more focused more on those AFOs. So, uh, we’ll talk, talk more on that today.

[(1:51)]Spencer: Yeah. Um, and, uh, AFO is something that controls both the ankle and the foot, right? And we, we name the orthosis off of, uh, the, the joints that it is controlling. So that’s what the AF stands for, is ankle and foot. And you don’t need to, uh, wait until you’re falling or stumbling or anything like that to start working on getting an AFO or talking to your doctor or your physical therapist. Um, once you, uh, are starting to notice some of these, uh, symptoms of like maybe weakness or something like that in your leg, then we can start working on getting something that can help you.

[(2:26)]Stephanie: Yeah, and I wanna say this was one of my early symptoms ’cause I presented with right leg weakness and having the toes dragging on the ground. And so I’ve used pretty much every level, like from light support to heavy support and it’s just the energy you save, trying to get that leg to do what you want it to do is invaluable and all of that to say upfront that using a device doesn’t mean you’re giving up or giving into your disease. It really means you’re setting yourself up to go further with less effort and less risk, right?

[(3:02)]Sam: Yeah, yeah.

[(3:03)]Spencer: Mm-hmm

[(3:04)]Sam: Absolutely. And, and you know, people sometimes just use it when they need it. It doesn’t have to be something that you wear all day every day. Um, it can go like in your shoes, so it’s a little bit more discreet. It, um, it can be used like only at the end of the day when you’re feeling really fatigued or tired. Um, and the, and something that I get asked a lot is, is it gonna make me weaker by using one? And the answer’s no. Like there’s devices that really just kick in when you need the support so you can still use your muscle until it starts to get tired, and then the brace helps you.

[(3:34)]Stephanie: Spencer, what does it feel like to actually wear one of these devices?

[(3:39)]Spencer: An AFO is a brace that helps stabilize the foot and ankle. Most commonly I see them used for foot drop, which is when the toes drag a little when you’re walking or, um, if you have like a, a slapping sound that happens when you hit your heel on the ground as you’re walking, as your toes come crashing down to the floor. Um, and we have off the shelf ones that are typically made outta carbon fiber. Uh, and then there’s plastic ones, and we even have ones with joints that are articulating. Um, and basically we’re, we’re selecting whatever is needed by the person based on their, uh, symptoms and the, their presentation. Uh, usually we’ll do a carbon fiber, AFO if drop foot is the only real gait issue. Um, but sometimes we’ll go with an articulating one if we need to, uh, help provide a little bit more stability and support to the ankle.

[(4:29)]Sam: So like foot drop is really commonly used or it’s a really common reason to get an orthotic. But other things like knee buckling or knee hyper extension or kind of like your foot rolling excessively are other good reasons that you might use an orthosis like Spencer mentioned.

[(4:47)]Stephanie: So let’s dive into what devices are available and now you both have the difficult job of describing these devices without being able to show them. So tell us a little bit more about what’s out there for the rest of us, you know, for those of us who live with foot drop.

[(5:03)]Sam: Okay. Um, so we will sometimes use devices like that functional electrical stimulation that I mentioned. So, um, that’s a… Can be a little bit trickier than an orthosis. Because it has these sticky pads that you put over the muscle and that connects to a device that gives your muscle a little electrical, um, jolts and they help activate the muscle to move. So that works really well for some people, but some people it actually doesn’t work at all. So it, it’s always something that I recommend trialing with a physical therapist if you can, at an outpatient clinic that has has access to those. So you can see if it helps you, if it’s comfortable for you. Some people don’t, aren’t bothered by it. Some people find it really painful. Um, and, and it is a, it is a long process to try to get that covered by insurance as well. Um, and it takes a little bit of a, a learning curve to figure out how to use it and where to put the sticky pads and, um, and all, all of that. So, so it is really useful and it can help strengthen the muscle and help, um, with the foot drop. But, um, a lot of times the orthotics are just a little bit simpler to use and get covered by insurance. So, um, that’s the, the option that most folks go with, that I work with.

[(6:23)]Stephanie: Yeah. I tried, uh, I tried the FES device, my PT and it was very cool, um, and I’ve prescribed them before. Interestingly, my veteran patients, the VA will usually pay for it and, and cover it for insurance or you have a little bit better of a chance of getting a VA to cover those. But private insurance, I don’t think I ever got any insurance company to agree to it. But, but they are cool. But it’s nice to know that sometimes the simpler solutions work better and are, and are affordable. And so is that something where you’re trying something in PT and then you might send them to Spencer.

[(6:58)]Sam: Yeah, so I mean, some people will come to me and just be like, Hey, I know that I have foot drop. And then like it will describe it to me and I’m like, yep, that’s right. Like let’s figure out, let’s try these three different things that it, you know, based on how you’re walking and what you’re saying that I think will help you. Um, and then I call someone like Spencer and I say, Hey, you know, I have this, this individual living with MS that is experiencing foot drop and, you know, whatever other symptoms they have, like maybe their, their ankle’s rolling a little bit out to the side. Um, we tried this, this, and this, but I’d love for you to come take a second peek at how they’re walking, how they look in this trial device that we have at our clinic and then, um, see if you can do some measurements or if you have any other thoughts. And then we schedule, I usually, during a next physical therapy visit, that’s when I skip schedule an orthotist to come in and do their own evaluation alongside to see what their thoughts are and to get their other, their opinion.

[(7:53)]Spencer: Mm-hmm. And when I’m there, I like to take a look at, uh, the other things that we talked about. Like, do you have a little bit of ankle instability or is it just that drop foot? Um, and what kind of things you like to do in your life that I can make sure that the device will help support you in maintaining that, uh, activity level that you like. Um, and another thing that, uh, is helpful is all of the evaluations and the consultations and stuff that a, uh, prosthetist, orthotist like myself do are, uh, they’re, uh, free. We don’t bill until we get down the line towards delivering the device. So if you have even just an interest, you can also, uh, set up a consultation with an orthotist and talk to them and we can kind of walk you, uh, through and assess whether or not that would be something that would be helpful for you.

[(8:42)]Stephanie: I had no idea that was a thing, to be honest. You taught me that. So you can just call an orthotist and request a consultation, no referral, no billing.

[(8:52)]Spencer: Yeah. And we have trial devices too. So we can get you in the office and we can put it on, see if it works in your shoes, see if it works for you, and, uh, help keep you from dragging your toe. And, uh, I usually we have parallel bars. So we’ll have you walk through and make sure that you’re safe and comfortable and, uh, if that is the case, then we can kind of coach you through on the steps of getting an orthosis for yourself, one to take home. Um, so it is helpful and we can, we can see, uh, in that, that point in time how effective the device would be for you, uh, without having to wait until we order you one.

[(9:28)]Stephanie: It’s amazing.

[(9:29)]Sam: Um, I was just gonna say too, like a lot of people ask like, do I need to see a physical therapist? Can I just go straight to the orthotist? Um, so typically like if you’re already seeing a physical therapist and you think you have these concerns or want someone to watch how you walk and get some input, like, could I just strengthen this muscle? Should I try this functional electrical stimulation or do the orthotist? If you have questions like that, then see a physical therapist. But, um, but neurologic physical therapist aren’t in every part of the country, um, but orthotists typically are. So, and you know, not every clinician might work the same way I do, where I, where I consult an orthotist to come in. That might not be possible where you live. So, um, for, for people that know that they have that, like a foot drop issue or if their knees buckling or they, they kind of have a little bit more in tune to what’s going on with how they’re walking, then you, then those people might wanna just walk into an or orthotist clinic like Spencer mentioned, and have them assess how you’re walking. So it it, you know, I hate the “it depends” answer, but it, it, it is very situation dependent on where you live and exactly what’s going on.

[(10:32)]Stephanie: Yeah.

[(10:33)]Spencer: If we have the opportunity to work with physical therapists hand in hand, that’s definitely the best way to go about it. ‘Cause we got two pairs of eyes with two, uh, scopes of practice that they can, that we can help to pick what is per the perfect solution for you. Um, so I do, I love working with the physical therapist when I have the opportunity to kind of dial in the device for the patient.

[(10:53)]Stephanie: Yeah. And oftentimes I’ll refer a patient to physical therapy thinking they’re heading in one direction and then you guys come in with your expertise and, and find an even better solution. And then also as a patient, I know how valuable it is to have a neuro trained PT, which I did for a very brief moment, but only in one of the five cities I’ve ever lived in had a neuro PT. And so they’re rare and precious commodity. Um, but like I said, I didn’t know I could just walk into an orthotist. So that’s really great information. Okay, so can we bust a myth? We sort of already touched on this, but are devices for people with severe mobility issues?

[(11:32)]Sam: No. Yeah, no. Um, there are, there are devices across the spectrum, you know, from someone who goes for, like, if I had a patient who only noticed foot drop after she ran for two miles. And then she noticed her foot was catching more. Um, so she was, she was young, like newly diagnosed, and that was like one of her first symptoms. So we figured out a solution that, you know, she would carry the carry, um, a light, one of those carbon fiber light devices that Spencer was talking about earlier. And after two miles she would stop, do a little stretch and strengthening exercise, put the brace on, and then continue. Um, and then, you know, I’ve used it on the complete other end of the spectrum they make devices that go all the way from your, your foot and ankle to the knee, to the hip for someone that might have, you know, more severe trouble with their, with their mobility and their strength.

[(12:23)]Stephanie: Yeah, I think what you just said is really important is that she could make it two miles without a device, which without a device is when she would’ve stopped

[(12:33)]Sam: Mm-hmm.

[(12:34)]Stephanie: With a device she kept going.

[(12:36)]Sam: Yeah.

[(12:37)]Stephanie: And that’s what the magic is for me. Right. Sorry, Spencer, you were saying?

[(12:42)]Spencer: Yeah, I was gonna tell a story. I had a, uh, recently I had a patient come in and she’s a young mother and she had, uh, some issues just later in the day. She noticed that, uh, in the evenings she started noticing she would catch her toes and being a young mother, she was afraid that she might trip, um, which would be dangerous, not just for her, but for her baby. And so, um, we got her a pair of carbon fiber AFOs that, uh, she was able to wear just in the evening. So she had a pair of shoes she would wear during the morning while she was, uh, not fatigued and then as she got a little more tired throughout the day, she would put on the AFOs to make sure, to give her that safety and stability, uh, to keep her doing her, uh, tasks a busy mother has to do.

[(13:24)]Stephanie: Yeah. That’s so smart and so creative. And that’s a really great example of like the creative thinking and the ingenuity that you can really get with a great team like you.

[(13:35)]Sam: Yeah. Yeah. And devices can really help you prolong your day and your activities and things that you enjoy. They…

[(13:41)]Stephanie: Yeah

[(13:42)]Sam: …they don’t stop you or limit you. They, they really help.

[(13:45)]Stephanie: Absolutely. And as somebody who works and often, you know, I sometimes say my brain works faster than my body. Uh, but when, like I said, if I am struggling to walk or the foot drop is setting in, or the weakness, like I’m spending more of my mental energy thinking about the things that should be unconscious, like walking and not falling over. And so that drains my cognitive battery faster and the fatigue faster. And so every little nano… Every little tiny drop of energy you can save is a huge win. When you have MS.

[(14:22)]Sam: Yeah, yeah. The cognitive load is, you know, when you’re out going for a walk and like you’re trying to watch the sidewalk and make sure that there’s not things that you can trip on, and then somebody’s talking to you, and then the light’s turning up ahead. There’s so many things to see and think about, and the device can just give you that peace of mind that one of those things doesn’t have to be, is my foot dropping or is my foot about to catch? So it just, it really, that peace of mind is invaluable.

[(14:46)]Spencer: And the reduction of cognitive load is something we talk about all the time with both orthotics and prosthetics. Like if a patient’s missing a foot or a knee and has to spend all their time thinking about how they’re gonna walk with that, um, then it, it, uh, you know, takes a lot out of what they can do while they’re walking. And we all wanna be able to carry on a conversation and hold our bags and everything and not have to worry about what, uh, what limitations we have because of our, uh, um, brain focusing constantly on, oh, I need to make sure to drive my foot foot… My knee forward so I don’t catch my toe. Uh, things like that to make sure you don’t fall.

[(15:24)]Stephanie: Yeah. Such important points. Now let’s talk about something really important. Shoes. MS can impact or self-esteem, and I’m being real. It can impact her self-esteem in so many ways, and I can’t tell you how many other women living with MS I’ve talked to who are just devastated about giving up wearing heels. And it’s completely and totally reasonable to care about whether your shoes match your outfit. So how can we balance function, style, and confidence?

[(15:58)]Sam: Yeah, that’s such a common concern. Um, and the good news is you don’t have to give up on looking good. But I will caveat that with sneakers are always gonna be like the most supportive, um, the most supportive option is with a brace especially. Um, and we like for, if we’re talking sneakers, like New Balance has like, historically just been a really supportive shoe. And, um, they really came back with some new styles that, and I have like several new balances now. I think that they’re, they’re just like a lot more stylish than they used to be. Um, but like the, the way that they’re built, that they’re wide, they’re stable, uh, um, and they really work well with most orthotics. So, um, sneakers are always gonna be your safest best bet. But I will have. Some, like, I’ve gotten creative and I, you know, I can’t say that I recommend it for everyone, but if you try sandals with, uh, with adjustable straps like a brand tibas, um, they, they can be adapted for more casual wear. I got my mom wearing them actually now too, because she was tripping and, um, you know, she’s aging and, and I was like, you need to get rid of these flip flops. Like it’s… I don’t wear ’em anymore either. I just wear adjustable sandals that they have a little bit of support and can strap onto your foot so that they’re safe. Um, I’ll add to just one more that wedges can sometimes be an, a good alternative to high heels because they, they can be like a little bit more dressy, but they do offer more stability than a high heel. Um, and then like sometimes I’ll have folks you can wear your shoes for short distances if it’s safe, like your, your cute, classy shoe, like when you’re walking in somewhere, um, or maybe for pictures and then just switch into something that’s a little bit more stable and safe.

[(17:34)]Stephanie: Oh yeah. I’ve mastered the, bringing a big enough purse for the alternative shoe. But I also do feel like wedges… I almost feel like I’m walking, um, off a starting block when you’re running. Right? So if, if I am sort of in the… I’m at a formal event where I’m not doing a lot of walking, it actually is a lot more supportive, um, and better than he, like I haven’t been able to wear a heel in a very long time, but wedges actually work and low chunky heels work. But we have a, we also have a household band on flip flops. They’re dangerous. They’re [inaudible].

[(18:09)]Sam: Yeah.

[(18:11)]Spencer: And we get lots of people coming in the clinic trying, uh, to get different shoes to fit their orthotic devices. Uh, and I can’t say, uh, wedges are, are a real viable option for orthotics. Um, but the, the, uh, they are… We can get them in those tennis shoes that you bring in alongside your wedges that you’re switching in and out of. Right? So usually we have to do a little bit of, uh, get a little bit creative to, uh, make these shoes work for you, but we almost always can. So whatever shoes you have that you love, I always recommend bringing ’em in and we’ll, we’ll try and and accommodate tho those shoes with the new device. Um, ’cause style and support shouldn’t have to be mutually ex- exclusive. So they, they, you should be able to have both.

[(18:58)]Stephanie: Yeah. And thanks Gen Z for making sneakers and dresses Cool, because that’s made life so much better.

[(19:05)]Sam: I love sneakers and dresses.

[(19:07)]Stephanie: Best. So let’s not gloss over one important reality. Um, this is all more complicated than it should be, right? So all of these things are great, but you need insurance. You need to take time off of work. You need to pay for devices and, and copays for visits. And these are real barriers that people face and sometimes, you know, I’m trying to convince somebody to go CPT or an orthotist. And now Spencer has broken down one myth that that initial consultation is in fact free. But what are you seeing in the real world and what advice do you have for people?

[(19:45)]Spencer: Um, one, one thing I will say is for orthotics, we do work kind of a little bit more like a pharmacy, where we do need an order from a doctor. Even if you’re gonna self-pay, uh, we still need to get an order from the doctor so that we can, uh, provide you with a device. Uh, how- however, ev every clinic is a little bit different, so sometimes you can go in to see the doctor and say, Hey, I just need uh, uh, ankle foot orthosis, ’cause I have drop foot and then they can send us an order and we can get that going just fine. Uh, other times there’s a little bit of back and forth, but that’ll happen on our end, right? So if you, if you come in to see us and talk to your doctor about it, then usually we can get the notes going back and forth until we get it covered, and then it’s just those two appointments, and then we’ll deliver the device for you.

[(20:26)]Sam: Yeah. And then just a tip to a lot of hospital systems have physical therapy clinics associated with them, and you’re more likely to find a neurologic physical therapist there. And if you’re feeling really overwhelmed with where to get started, just know that you can call a PT clinic and ask for a 15 minute consult. I would just call and say, I have multiple sclerosis and I think I have foot drop. Can you help me? And you should be able to get an answer. You know, maybe not right away ’cause a receptionist might not understand what, what all of that means but, um, they can communicate with the physical therapists and get you an answer if they can help or not.

[(21:01)]Stephanie: Those are both two easy steps to get started. And there’s also another program that I refer people to a lot. Uh, the MSAA, MS Association of America, they have a medical device and equipment assistance program, so you can get up to, I think a one or two devices a year if you qualify financially. So there are programs like that. We’ll link that in the description of the podcast too, so people can check out their website and their application process. But is there any anything else you wanna close with?

[(21:35)]Sam: Um, I would just say if you, if you feel like you’re, how you’re walking is changing, even if it’s just a little bit or you’re not sure, or you know, you’re getting really tired by the end of the day, talk to someone about it. It, it might be related to fatigue, it might be related to weakness. Um, but you shouldn’t have to live with tripping and falling or avoiding activities or going for walks. Because, because you’re noticing these changes, there are a lot of people that are out there to help you. And um, as we mentioned earlier, devices can empower you to live more, um, and they really, they really aren’t limiting.

[(22:09)]Spencer: And don’t wait till you’re desperate either. Come in early and, uh, we can kind of assess what’s going on, see what might help you, and sometimes it can take a little bit of time as well. So we wanna make sure we get you in early and, um, these devices can make your life easier, not harder.
So they, they can actually help you stay independent longer. And that’s, that’s our goal is we want you to have, take charge of your life and be able to be independent as long as possible.

[(22:36)]Stephanie: Yeah. Thank you both so much. I love everything you just said, and this is a big one for me. But accepting help doesn’t mean you’re giving anything up or you’re not strong. It just means that you’re building a life that works for you. And so whether that means you’re using a device or you’re wearing cute sneakers, or you’re asking PT for a consult, these are all things that we can do to live our best lives with MS. So thank you both for being here and for sharing your expertise and experience with us. It really means a lot.

[(23:10)]Sam: Thanks for having me.

[(23:11)]Spencer: Thank you guys.

[(23:12)]Stephanie: Thank you for listening to this episode of the Can Do MS podcast. If you like this episode, please leave us a rating and review on Apple Podcasts or Spotify. We really appreciate your feedback. We’d also like to thank all of our generous sponsors for their support of this episode of the Can Do Ms podcast. Until next time, be well and have a great day.
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