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
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 here and 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.
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. 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 2:All right. So you know, we've been talking about ankle foot orthoses a lot.
Speaker 3:It is yeah.
Speaker 2:Yeah, 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 3:Well, 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 4:Right.
Speaker 3:Which 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 4:Okay.
Speaker 3:And those are knee ankle foot orthoses and that's for when support is needed at the knee as well.
Speaker 2:So 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 3:Wow, that's a that's a significant number.
Speaker 2:Yeah, it is, and it makes you kind of wonder why. Why are so many people using them?
Speaker 3:Right.
Speaker 2:And, you know, could they make a difference for you.
Speaker 3:You could AFOS benefit you.
Speaker 2:Exactly, 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 3:That's a great point. Firsthand yeah, firsthand experience is so valuable.
Speaker 2:Yeah, so let's talk about why someone living with CMT might consider AFOs in the first place.
Speaker 3:Well, the materials that you've sent over really highlight two main reasons.
Speaker 4:Okay.
Speaker 3:And those are foot drop and balance issues.
Speaker 4:Got it.
Speaker 3:So you know, foot drop isn't just a minor convenience, it really affects your whole walking pattern.
Speaker 4:Right.
Speaker 3:And it can sometimes lead to what's described as an exaggerating gait.
Speaker 2:Yeah, and you might find yourself kind of adjusting how you walk Right Then, maybe relying more on leaning or touching things for stability.
Speaker 3:Exactly, 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 2:Yeah, what is it?
Speaker 3:The possibility of walking more smoothly and efficiently.
Speaker 4:Okay.
Speaker 3:And, ultimately, gaining more independence in your day-to-day life.
Speaker 2:That's huge. It is so. You know, we often think about these issues in adults. But what about kids?
Speaker 3:Yeah, that's an important point.
Speaker 2:With CMT is bracing, something that they should consider too.
Speaker 3:Bracing is definitely a consideration for children with CMT.
Speaker 4:Okay.
Speaker 3:The fundamental evaluations and goals are similar.
Speaker 4:Okay.
Speaker 3:But 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 2:That makes sense. You don't want them to outgrow it too fast.
Speaker 3:Exactly.
Speaker 2:So let's talk a little bit more about how these walking difficulties actually kind of manifest themselves.
Speaker 3:Sure, 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 2:Now remind me what is the tibialis anterior again.
Speaker 3:The 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 4:Oh, okay.
Speaker 3:Where 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 2:I see.
Speaker 3:And then there's even circumduction.
Speaker 2:Circumduction. What is that?
Speaker 3:Where you swing your leg out in a circle to clear the ground.
Speaker 2:Wow, so it sounds like a lot of extra work. Just to take a step.
Speaker 3:Absolutely it is, and that's a really key insight here.
Speaker 4:Okay.
Speaker 3:These movements, while they allow you to walk, require more energy Right and, as a result, they increase your oxygen consumption.
Speaker 4:Okay.
Speaker 3:They overtax other muscles, leading to fatigue much quicker.
Speaker 2:Makes sense.
Speaker 3:That, perhaps most importantly, they significantly increase your risk of trips and falls.
Speaker 4:Wow.
Speaker 3:So the primary goal of an AFO is to really prevent that toe drag which in turn, helps to mitigate these risks.
Speaker 2:So AFOs are really designed to help with a lot of these foot and ankle problems.
Speaker 1:Yeah.
Speaker 2:And it seems like they're addressing more than just foot drop.
Speaker 3:They are the materials list, a whole range of issues.
Speaker 4:Like what.
Speaker 3:Well, one is what we call inappropriate initial contact.
Speaker 4:Okay.
Speaker 3:And that's how your foot first touches the ground when you're walking.
Speaker 4:Right.
Speaker 3:So this might be with too little heel strike. Got it, you know, a flat foot landing.
Speaker 4:Okay.
Speaker 3:Or 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 2:Pes cavus, yeah, which is a very high arch Okay.
Speaker 3:As well as varus and valgus deformities.
Speaker 2:Now, what are those?
Speaker 3:So 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 2:Now I noticed that they mentioned this term called triplanar correction. Yeah, and it sounds like that's addressing movement in every direction.
Speaker 3:Well, you know, what's fascinating about that term is exactly what it implies.
Speaker 4:Okay.
Speaker 3:Tri-planar correction means that the AFO is designed to influence movement in all three planes of motion. Wow At your foot and ankle.
Speaker 4:Okay.
Speaker 3:So that includes the frontal plane. What's that, that's the side-to-side movements, like tilting your foot in or out.
Speaker 4:Okay.
Speaker 3:Which we call aversion and inversion.
Speaker 4:Got it.
Speaker 3:And 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 4:Right.
Speaker 3:And finally, the transverse plane involves rotating your foot inward or outward which is called abduction and adduction.
Speaker 4:I see.
Speaker 3:So 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 2:So it's much more sophisticated than I initially thought.
Speaker 4:It is.
Speaker 2:Than just preventing the foot from, you know, flapping around.
Speaker 3:It really is.
Speaker 2:So the materials also mentioned different types of AFOs, so obviously it's not a one size fits all situation.
Speaker 3:Definitely not.
Speaker 2:So what are some of the types that we see?
Speaker 3:Well, we see a variety of designs.
Speaker 2:Okay.
Speaker 3:We have what we call posterior leaf, spring AFOs.
Speaker 4:Okay.
Speaker 3:We have solid ankle AFOs floor floor reaction aphos.
Speaker 4:I see.
Speaker 3:Jointed aphos. Okay, some with adjustable range of motion.
Speaker 2:Got it.
Speaker 3:We have energy storing carbon fiber, aphos.
Speaker 4:Wow Okay.
Speaker 3:And then those CAFOs we talked about that extended to the knee.
Speaker 2:Right, so it seems like there are a lot of options.
Speaker 3:There are.
Speaker 2:So how do you actually determine you know which type is best for an individual.
Speaker 3:Well, 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 2:Makes sense. So let's talk about custom-made versus off-the-shelf AFOs.
Speaker 3:Okay, 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 2:Really important point.
Speaker 3:It is. A proper evaluation is absolutely crucial to figure out the best option for you.
Speaker 2:So if you're considering AFOs, what kind of evaluation process can you expect?
Speaker 3:That's where the expertise of a certified orthodist comes in Okay. They're going to conduct a very thorough evaluation.
Speaker 4:Okay.
Speaker 3:Which will likely include what we call a gait analysis.
Speaker 2:What does that mean?
Speaker 3:Basically, they're just going to watch how you walk.
Speaker 4:Okay.
Speaker 3:And identify any deviations from a normal gait.
Speaker 4:I see.
Speaker 3:They're also going to perform what we call manual muscle testing, right To check the strengths in key muscle groups.
Speaker 4:Okay.
Speaker 3:So things like your tibialis anterior, your gastrocopnemius, which is your calf muscle Right, your quadriceps, hamstrings and hip flexors.
Speaker 2:So they're really checking everything. They are Okay.
Speaker 3:They're also going to assess if there's any weakness in your hands.
Speaker 2:Interesting.
Speaker 3:I wouldn't have thought about that that will work best on the brace.
Speaker 2:Makes sense.
Speaker 3:And of course, they're going to evaluate your balance.
Speaker 2:So, beyond those physical assessments, what other factors are important in deciding on the right AFO?
Speaker 3:Well, the orthodist will take into account the strength levels in those key muscle groups we just talked about.
Speaker 4:Okay.
Speaker 3:Your 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 2:Yeah, what does it look like?
Speaker 3:It involves that initial evaluation Okay, and then they'll take a corrective mold of your leg.
Speaker 4:Oh, wow.
Speaker 3:They'll make necessary adjustments to the mold in a lab. I see and often they'll provide temporary test braces.
Speaker 2:Okay.
Speaker 3:To 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 2:So it's a really personalized process. It is. So what about if you're thinking about an off-the-shelf option?
Speaker 3:Well, the materials actually provide some really good questions that you should ask to make sure that it's appropriate for your needs.
Speaker 2:Awesome. So balance is obviously a huge issue for a lot of people with CMT.
Speaker 3:Absolutely.
Speaker 2:How can AFOs help improve balance?
Speaker 3:Well, 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 2:That makes sense.
Speaker 3:The materials specifically mention that floor reaction AFOs and energy storing AFOs can be particularly beneficial for balance.
Speaker 2:So 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 3:The clear recommendation is to seek an evaluation from a certified orthodist.
Speaker 4:Okay.
Speaker 3:And the materials actually provide a link to the website.
Speaker 2:Oh, that's great.
Speaker 3:Of 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.
Speaker 2:So 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 3:Yeah, April.
Speaker 2:April 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 3:Well, if you've been wondering about AFOs at all, the Summit is definitely the place to be.
Speaker 4:Okay.
Speaker 3:You'll not only have the chance to hear from experts.
Speaker 4:Okay.
Speaker 3:But even more importantly, you'll have the opportunity to actually try out different sample AFOs.
Speaker 2:Oh, that's so cool yeah firsthand. Yeah.
Speaker 3:And 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 2:That's awesome, so that hands-on experience is really invaluable.
Speaker 3:It is.
Speaker 2:So if our listeners want more information about you, know which providers and orthodontists will be there where can they find that?
Speaker 3:All of those details will be available in the agenda PDF on cmtfsummitorg.
Speaker 2:All right, so cmtfsummitorg.
Speaker 3:Exactly, and you can also register for the summit on that website.
Speaker 2:Okay, perfect, and it's just about a month away.
Speaker 3:Yeah, it's coming up quick.
Speaker 2:So 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 2:That'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 3:Yeah, it's a great resource so.
Speaker 2:AFO 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 3:Exactly.
Speaker 2:But it could really be a life-changing decision.
Speaker 3:It could be For a lot of people, absolutely.
Speaker 2:So thanks for listening to the Deep Dive.
Speaker 3:Thanks for having me.
Speaker 1:And 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.