CMT Simplified
Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease (CMT). In episodes under 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments, and scientific discoveries shaping the future of CMT.
Perfect for busy listeners, *CMT Simplified* is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered, and up-to-date—one short episode at a time!
CMT Simplified
The ABCs of AFOs: A Guide for CMT Patients
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AFOs might just be three letters—but for those living with CMT, they can mean the difference between daily struggle and confident mobility.
In this episode, we explore how the right Ankle Foot Orthosis can reduce fatigue, improve stability, and even change the way you walk. From common gait compensations to what makes a good brace great, this conversation is packed with insights that could change your next step—literally.
We also highlight two must-have tools, co-written by HNF and CMT orthotist Mitch Warner, CPO of Ortho Rehab Designs:
✅ The ABCs of AFOs Guide
✅ AFO Evaluation Checklist
👣 Curious about how carbon fiber compares to a classic plastic brace?
🦿 Not sure what “triplanar correction” means—but think it might matter to you?
🎧 Tune in, take notes, and get ready to rethink what bracing can do.
📥 Download your free guides hereand take that first step toward better mobility.
Participate in Research Join GRIN Today!
Register for the 2025 CMT Summit in Nashville on 4/24-26
Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.
Thanks for listening! Learn more at hnf-cure.org and subscribe for more updates on CMT research and advancements.
Introduction to CMT Simplified Podcast
Speaker 1Welcome to CMT Simplified, brought to you by the Hereditary Neuropathy Foundation. This podcast delivers bite-sized updates on the latest research and advancements in Charcot-Marie-Tooth disease, CMT. With episodes ranging from 10 to 20 minutes, we cut through the jargon to bring you clear, concise insights into breakthroughs, treatments and scientific discoveries shaping the future of CMT. Perfect for busy listeners. Cmt Simplified is your on-the-go resource for understanding complex information in a straightforward and approachable way. Stay informed, empowered and up-to-date. One short episode at a time.
Speaker 2All right. So you know, we've been talking about ankle foot orthoses a lot.
Speaker 3It is yeah.
Speaker 2Yeah, AFOs, Exactly. And you know, with the CNT Summit coming up, we thought this would be a really good time to kind of dive in and really look at, like, what these devices are all about and you know why they might actually matter for you Absolutely. So you know, when we talk about AFOs, what are we really talking about?
Speaker 3Well, when we're talking about AFOs, we're talking about orthotic devices that enclose the ankle and the foot. Okay, the key thing to remember is that they don't extend above the knee. Got it so, and really the primary function from a lot of the materials that you sent over is to prevent what we call foot drop.
Speaker 4Right.
Speaker 3Which many of you you know could be a significant challenge with CNT because of muscle weakness. Now we also have what we call key foes.
Speaker 4Okay.
Speaker 3And those are knee ankle foot orthoses and that's for when support is needed at the knee as well.
Speaker 2So it's interesting, right in the HNF Global Patient Registry, which is called GRIN, they found that around 23 percent of the patients that they surveyed are actually using AFOS.
Speaker 3Wow, that's a that's a significant number.
Speaker 2Yeah, it is, and it makes you kind of wonder why. Why are so many people using them?
Speaker 3Right.
Speaker 2And, you know, could they make a difference for you.
Speaker 3You could AFOS benefit you.
Speaker 2Exactly, and you know this is something we're going to explore today and you know, especially with the upcoming CMT Summit in Nashville this April, it's going to be a great opportunity not only to learn more, but also to try out different AFOs.
Speaker 3That's a great point. Firsthand yeah, firsthand experience is so valuable.
Speaker 2Yeah, so let's talk about why someone living with CMT might consider AFOs in the first place.
Speaker 3Well, the materials that you've sent over really highlight two main reasons.
Speaker 4Okay.
Speaker 3And those are foot drop and balance issues.
Speaker 4Got it.
Speaker 3So you know, foot drop isn't just a minor convenience, it really affects your whole walking pattern.
Speaker 4Right.
Speaker 3And it can sometimes lead to what's described as an exaggerating gait.
Speaker 2Yeah, and you might find yourself kind of adjusting how you walk Right Then, maybe relying more on leaning or touching things for stability.
Speaker 3Exactly, and when balance is a concern, even everyday movements can just feel less secure. Right, but the really interesting thing is the potential upside of AFOs, and the materials really highlight this.
Speaker 2Yeah, what is it?
Speaker 3The possibility of walking more smoothly and efficiently.
Speaker 4Okay.
Speaker 3And, ultimately, gaining more independence in your day-to-day life.
Speaker 2That's huge. It is so. You know, we often think about these issues in adults. But what about kids?
Speaker 3Yeah, that's an important point.
Speaker 2With CMT is bracing, something that they should consider too.
Speaker 3Bracing is definitely a consideration for children with CMT.
Speaker 4Okay.
CMT Gait Issues and Pathologic Patterns
Speaker 3The fundamental evaluations and goals are similar.
Speaker 4Okay.
Speaker 3But there's one crucial difference what's that? Growth Right, so orthodists really have to factor in how quickly a child might grow. Okay, and Right, so orthodists really have to factor in how quickly a child might grow and how the brace design can accommodate that without losing its effectiveness.
Speaker 2That makes sense. You don't want them to outgrow it too fast.
Speaker 3Exactly.
Speaker 2So let's talk a little bit more about how these walking difficulties actually kind of manifest themselves.
Speaker 3Sure, the term pathologic gait comes up a lot. What does that really look like for someone with CMT? Well, think of pathologic gait as a walking pattern that's been altered because of the impact that. Cmt has had on your lower limbs, so maybe reduced strength or limitations in joint movement. The materials actually describe some common gait deviations that are seen when the tibialis anterior muscle is weak.
Speaker 2Now remind me what is the tibialis anterior again.
Speaker 3The tibialis anterior is a key muscle in your shin that helps lift your foot Got it, so it's really essential for that normal walking stride. So if that's not working properly. What are some things that we might see? Well, one of the things we see is that step edge gait where you have to lift your leg really high to clear the ground. We also see bilateral hip hiking.
Speaker 4Oh, okay.
Speaker 3Where you're almost shrugging your hips if you walk Interesting. And then there's lateral trunk bending where you kind of lean to one side.
Speaker 2I see.
Speaker 3And then there's even circumduction.
Speaker 2Circumduction. What is that?
Speaker 3Where you swing your leg out in a circle to clear the ground.
Speaker 2Wow, so it sounds like a lot of extra work. Just to take a step.
Speaker 3Absolutely it is, and that's a really key insight here.
Speaker 4Okay.
Speaker 3These movements, while they allow you to walk, require more energy Right and, as a result, they increase your oxygen consumption.
Speaker 4Okay.
Speaker 3They overtax other muscles, leading to fatigue much quicker.
Speaker 2Makes sense.
Speaker 3That, perhaps most importantly, they significantly increase your risk of trips and falls.
Speaker 4Wow.
Speaker 3So the primary goal of an AFO is to really prevent that toe drag which in turn, helps to mitigate these risks.
Speaker 2So AFOs are really designed to help with a lot of these foot and ankle problems.
Speaker 1Yeah.
Speaker 2And it seems like they're addressing more than just foot drop.
Speaker 3They are the materials list, a whole range of issues.
Speaker 4Like what.
Speaker 3Well, one is what we call inappropriate initial contact.
Speaker 4Okay.
Speaker 3And that's how your foot first touches the ground when you're walking.
Speaker 4Right.
Speaker 3So this might be with too little heel strike. Got it, you know, a flat foot landing.
Speaker 4Okay.
Speaker 3Or even landing on your forefoot first, if your foot is dropping. Right. So beyond that, afos directly address foot drop, of course Right, but they can also provide support for what we call pes cavus.
Speaker 2Pes cavus, yeah, which is a very high arch Okay.
Speaker 3As well as varus and valgus deformities.
Speaker 2Now, what are those?
Speaker 3So those are the inwards or outward angles in your lower leg and foot. Got it? No, what are those? So those are the inwards or outward angles in your lower leg and foot. Got it. They can offer stability when there's muscle atrophy Right and, crucially, they can contribute to improved balance.
Speaker 2Now I noticed that they mentioned this term called triplanar correction. Yeah, and it sounds like that's addressing movement in every direction.
Types and Benefits of Different AFOs
Speaker 3Well, you know, what's fascinating about that term is exactly what it implies.
Speaker 4Okay.
Speaker 3Tri-planar correction means that the AFO is designed to influence movement in all three planes of motion. Wow At your foot and ankle.
Speaker 4Okay.
Speaker 3So that includes the frontal plane. What's that, that's the side-to-side movements, like tilting your foot in or out.
Speaker 4Okay.
Speaker 3Which we call aversion and inversion.
Speaker 4Got it.
Speaker 3And then there's the sagittal plane, which is that up and down motion of pointing your toes, which is plantar flexion, and lifting your foot, which is dorsiflexion.
Speaker 4Right.
Speaker 3And finally, the transverse plane involves rotating your foot inward or outward which is called abduction and adduction.
Speaker 4I see.
Speaker 3So by addressing movement in all of these planes, wow, the goal is to really achieve the best possible alignment and stability for your ankle and foot, which can have a significant impact on your overall balance and gait.
Speaker 2So it's much more sophisticated than I initially thought.
Speaker 4It is.
Speaker 2Than just preventing the foot from, you know, flapping around.
Speaker 3It really is.
Speaker 2So the materials also mentioned different types of AFOs, so obviously it's not a one size fits all situation.
Speaker 3Definitely not.
Speaker 2So what are some of the types that we see?
Speaker 3Well, we see a variety of designs.
Speaker 2Okay.
Speaker 3We have what we call posterior leaf, spring AFOs.
Speaker 4Okay.
Speaker 3We have solid ankle AFOs floor floor reaction aphos.
Speaker 4I see.
Speaker 3Jointed aphos. Okay, some with adjustable range of motion.
Speaker 2Got it.
Speaker 3We have energy storing carbon fiber, aphos.
Speaker 4Wow Okay.
Speaker 3And then those CAFOs we talked about that extended to the knee.
Speaker 2Right, so it seems like there are a lot of options.
Speaker 3There are.
Speaker 2So how do you actually determine you know which type is best for an individual.
Speaker 3Well, the specific type of AFO that's recommended really depends on the individual's specific needs. Okay, you know the extent of their muscle weakness, right, and the particular challenges that they're facing with their gait and balance.
Speaker 2Makes sense. So let's talk about custom-made versus off-the-shelf AFOs.
Speaker 3Okay, what's the difference? Well custom a foes are created specifically for your unique foot and leg shape. Okay, and they use a mold to do this right and this allows for a very precise fit. I see and can address specific deformities that you might have got it now off the shelf. A foes, on the other hand, are prefabricated in standard sizes okay and this is a really important point from the materials, especially for those with neuropathic conditions like CMT. One size does not fit all.
Speaker 2Really important point.
Speaker 3It is. A proper evaluation is absolutely crucial to figure out the best option for you.
Evaluation Process for Getting AFOs
Speaker 2So if you're considering AFOs, what kind of evaluation process can you expect?
Speaker 3That's where the expertise of a certified orthodist comes in Okay. They're going to conduct a very thorough evaluation.
Speaker 4Okay.
Speaker 3Which will likely include what we call a gait analysis.
Speaker 2What does that mean?
Speaker 3Basically, they're just going to watch how you walk.
Speaker 4Okay.
Speaker 3And identify any deviations from a normal gait.
Speaker 4I see.
Speaker 3They're also going to perform what we call manual muscle testing, right To check the strengths in key muscle groups.
Speaker 4Okay.
Speaker 3So things like your tibialis anterior, your gastrocopnemius, which is your calf muscle Right, your quadriceps, hamstrings and hip flexors.
Speaker 2So they're really checking everything. They are Okay.
Speaker 3They're also going to assess if there's any weakness in your hands.
Speaker 2Interesting.
Speaker 3I wouldn't have thought about that that will work best on the brace.
Speaker 2Makes sense.
Speaker 3And of course, they're going to evaluate your balance.
Speaker 2So, beyond those physical assessments, what other factors are important in deciding on the right AFO?
Speaker 3Well, the orthodist will take into account the strength levels in those key muscle groups we just talked about.
Speaker 4Okay.
Speaker 3Your age, your overall level of activity and strength where there's any hand involvement, the extent of the neuromodular damage and your balance abilities. Okay, now for custom MAFOs. The process is a little bit more involved.
Speaker 2Yeah, what does it look like?
Speaker 3It involves that initial evaluation Okay, and then they'll take a corrective mold of your leg.
Speaker 4Oh, wow.
Speaker 3They'll make necessary adjustments to the mold in a lab. I see and often they'll provide temporary test braces.
Speaker 2Okay.
Speaker 3To make sure the fit and correction are right. Wow, that's great, and then they'll fabricate the final brace, followed by a final fitting, and make any tweaks that are needed.
Speaker 2So it's a really personalized process. It is. So what about if you're thinking about an off-the-shelf option?
Speaker 3Well, the materials actually provide some really good questions that you should ask to make sure that it's appropriate for your needs.
Speaker 2Awesome. So balance is obviously a huge issue for a lot of people with CMT.
Speaker 3Absolutely.
Speaker 2How can AFOs help improve balance?
Speaker 3Well, the fundamental principle here is that good balance starts with a stable foundation Right, and by correcting the alignment of your foot and ankle within the foot plate of the AFO, it can really contribute to that stability. I see, however, it can really contribute to that stability. I see, however, it's really important to realize that remaining or improving balance often takes practice Right, and you might even want to work with a physical therapist to retrain your body's balance mechanisms.
Speaker 2That makes sense.
Speaker 3The materials specifically mention that floor reaction AFOs and energy storing AFOs can be particularly beneficial for balance.
Speaker 2So if someone with CMT is having balance issues or foot or leg pain, or they're noticing changes in their walking pattern, what's the main recommendation?
Speaker 3The clear recommendation is to seek an evaluation from a certified orthodist.
Speaker 4Okay.
Speaker 3And the materials actually provide a link to the website.
Speaker 2Oh, that's great.
Speaker 3Of the American Board for Certification in Orthotics, prostheticsotics, prosthetics and pedorthics wow, that's a mouthful it is so the ABC website exactly and on that website you can search for certified professionals in your area. That's great yeah, and it's really crucial not to ignore these issues, right, because unfortunately, unaddressed gait and balance problems yeah can lead to further joint problems, increased muscle weakness and fatigue a higher risk of falls and a general decline in your ability to participate in everyday activities.
Nashville CMT Summit Preview
Speaker 2So it's really important to address these things early. So, this all really emphasizes the importance of the CMT Summit that's coming up in Nashville.
Speaker 3Yeah, April.
Speaker 2April 24th through the 26th Summit that's coming up in Nashville. Yeah, april, april 24th through the 26th, and this sounds like a really fantastic opportunity for our listeners to kind of take that next step, I agree, and really learn more, absolutely. So tell us a little bit more about it.
Speaker 3Well, if you've been wondering about AFOs at all, the Summit is definitely the place to be.
Speaker 4Okay.
Speaker 3You'll not only have the chance to hear from experts.
Speaker 4Okay.
Speaker 3But even more importantly, you'll have the opportunity to actually try out different sample AFOs.
Speaker 2Oh, that's so cool yeah firsthand. Yeah.
Speaker 3And there will be several AFO providers and certified orthodists there who can offer you guidance and help you get a sense of what might work best for you.
Speaker 2That's awesome, so that hands-on experience is really invaluable.
Speaker 3It is.
Speaker 2So if our listeners want more information about you, know which providers and orthodontists will be there where can they find that?
Speaker 3All of those details will be available in the agenda PDF on cmtfsummitorg.
Speaker 2All right, so cmtfsummitorg.
Speaker 3Exactly, and you can also register for the summit on that website.
Speaker 2Okay, perfect, and it's just about a month away.
Speaker 3Yeah, it's coming up quick.
Speaker 2So now's the time to make plans definitely if you think about going so you kind of bring it all together. A foes can be a really helpful tool for so many people living with CMT. Yeah, offering potential improvements and mobility and balance. Right, but, as we said, everyone's needs are unique, absolutely so a thorough assessment by a certified orthodist is absolutely essential completely determine if they're the right choice for you.
Speaker 2That's the core message, yeah and to help you prepare for that conversation with an orthodist, we really recommend that you download the ABCs of AFOS Guide.
Speaker 3Yeah, it's a great resource so.
Speaker 2AFO Checklist. We'll include a link in the show notes. Perfect, and these resources have some really valuable information and they can help you kind of think through the question that you might want to ask. So, finally, here's something to think about. Okay, if you're experiencing any gate or balance issues related to your CMT right, what's one small step that you could take today? Yeah to explore whether a foes might offer you a new sense of freedom yeah, that's a great question and independence, love that so maybe it's downloading those resources that we mentioned Right, or maybe it's looking into attending the CMT Summit in Nashville.
Speaker 3Exactly.
Speaker 2But it could really be a life-changing decision.
Speaker 3It could be For a lot of people, absolutely.
Speaker 2So thanks for listening to the Deep Dive.
Final Thoughts and Resources
Speaker 3Thanks for having me.
Speaker 1And for listening to CMT Simplified. To learn more about HNF and 2025 Summit, visit hnf-cureorg. Join CMT families around the world, creating impact that matters.