Navigating Claims With Charcot-Marie-Tooth Disease (CMT)

Welcome to Season 5, Episode 16 of Winning Isn't Easy. In this episode, we'll dive into the complicated topic of "Navigating Claims With Charcot-Marie-Tooth Disease (CMT)."

Join attorney Nancy L. Cavey, a leading expert in disability claims, for an eye-opening discussion on a frequently misunderstood condition with major implications for long-term disability benefits: Charcot-Marie-Tooth disease, or CMT. If you haven’t heard of CMT, you’re not alone. Though it’s one of the most common inherited neurological disorders, it’s often overlooked - especially in disability evaluations. That oversight can cost you the benefits you need. In today’s episode, we’ll break down what CMT is, how it progresses, and why it can be more disabling than people - including insurance companies - realize. From muscle weakness and balance issues to pain and fatigue, we’ll explore how to document your condition effectively and meet insurer expectations. You’ll learn how CMT interacts with disability policy standards, what evidence to submit, and how to avoid the most common claim mistakes. Whether you’re applying, appealing, or just exploring your options, this episode is packed with strategies to protect your financial future. Let’s get into it.

In this episode, we'll cover the following topics:

One - Understanding Charcot-Marie-Tooth Disease

Two - Challenges in Proving Disability with Charcot-Marie-Tooth Disease

Three - Best Practices for Long-Term Disability Claims Involving Charcot-Marie-Tooth Disease

Whether you're a claimant, or simply seeking valuable insights into the disability claims landscape, this episode provides essential guidance to help you succeed in your journey. Don't miss it.


Listen to Our Sister Podcast:

We have a sister podcast - Winning Isn't Easy: Navigating Your Social Security Disability Claim. Give it a listen: https://wiessdpodcast.buzzsprout.com/


Resources Mentioned in This Episode:

LINK TO ROBBED OF YOUR PEACE OF MIND: https://mailchi.mp/caveylaw/ltd-robbed-of-your-piece-of-mind

LINK TO THE DISABILITY INSURANCE CLAIM SURVIVAL GUIDE FOR PROFESSIONALS: https://mailchi.mp/caveylaw/professionals-guide-to-ltd-benefits

FREE CONSULT LINK: https://caveylaw.com/contact-us/


Need Help Today?:

Need help with your Long-Term Disability or ERISA claim? Have questions? Please feel welcome to reach out to use for a FREE consultation. Just mention you listened to our podcast.

Review, like, and give us a thumbs up wherever you are listening to Winning Isn't Easy. We love to see your feedback about our podcast, and it helps us grow and improve.

Please remember that the content shared is for informational purposes only, and should not replace personalized legal advice or guidance from qualified professionals. 

Transcript

Nancy Cavey [00:00:14]:
 Hey, I'm Nancy Cavey, national ERISA and individual disability attorney. Welcome to Winning isn't Easy. Before we get started, I've got to give you a legal disclaimer. This podcast is not legal advice. The Florida Bar association says I've got to say this. Now that I've said it, nothing will ever prevent me from giving you an easy to understand overview of the disability insurance world, the games that disability carriers play, and what you need to know to get the disability benefits you deserve. So off we go. Today we're going to dive into an often misunderstood condition with major implications for disability claims.
 
 Nancy Cavey [00:00:51]:
 Charcot Marie Disease, or cmt. Now, if you've never heard of it, you're not alone. Despite being one of the most commonly inherited neurological disorder, it's often frequently overlooked when it comes to disability evaluations. Many people, even medical professionals, underestimate how disabling this condition can become, particularly over time. So today I'm going to break down what CMT is, how it progresses, how it affects your ability to qualify for long term disability benefits. And as we walk through these topics, I hope that you come out of this with an understanding of how the disease presents, why it's disabling, how you can go about proving your claim for disability, what to submit, how to build your case, and pitfalls to avoid. So I'm going to talk about three things. One, understanding cmt, two, challenges improving your disability claim because of cmt, and lastly, best practices for long term disability claims involving CMT disease.
 
 Nancy Cavey [00:01:54]:
 Got it. Let's take a break for a moment before we get into the episode. And please come back with a pad. And please come back with a pen. And even if you don't have cmt, I think you should be listening to this episode because I think you need to understand the framework. The framework is what is a person's symptoms? How does it impact a person's functionality? How does that relate to the definition of disability in the terms of a policy, what proof you have to submit, and what pitfalls you might encounter in the course of your claim. And this happens in every type of claim, not only CMT claims. Got it.
 
 Nancy Cavey [00:02:29]:
 We'll be back in a minute.
 
 Speaker B [00:02:31]:
 Have you been robbed of your peace of mind by your disability insurance carrier? You owe it to yourself to get a copy of Robbed of your peace of mind, which provides you with everything you need to know about the long term disability claims process. Request your free copy of the book@kvlaw.com today.
 
 Nancy Cavey [00:02:53]:
 Welcome back to Winning isn't Easy. Let's talk about understanding Charcote Marie tooth disease. So let's start out with the basics. What exactly is this disease and why is it relevant if you have an ERISA disability policy or plan? Now, CMT is a hereditary disorder that affects the peripheral nervous system. The peripheral nervous system is the network of nerves outside the brain and spinal cord that control movement and sensation in your limbs. So in practical terms, CMT slowly wears away your ability to move normally and feel sensations in your arms, your legs, your hands and your feet. It's categorized as a hereditary motor and sensory neuropathy. So that means it impacts two functions that we rely on most to move and function throughout the day.
 
 Nancy Cavey [00:03:39]:
 The motor nerves, which control muscle movement, and sensory nerves, which allow you to feel temperature, pressure and pain. And what does the damage look like in real life? That's important because this is a progressive disease. So one of the earliest signs is muscle atrophy in the feet or lower legs. Think of that as muscle loss and it often leads to a high step gait or a foot drop. People with CMT often struggle to lift their toes while walking and as a result, they're prone to trips, falls, especially on uneven surfaces. Now, over time, the weakness is going to spread to the calves, making it difficult to stand, walk or balance without support. Many individuals end up needing assistive devices like braces, canes or even scooters. But the upper body isn't spared.
 
 Nancy Cavey [00:04:28]:
 CMT can also cause muscle weakness in the hands, leading to reduced grip strength and trouble with fine motor skills like buttoning a button, typing, tying a scarf. Then there is also the sensory loss. As the disease progresses, people will have reduced sensitivity to touch, temperature and pain, particularly in the lower extremities and feet. That means that they may not notice when they've cut or burned themselves, or they may suffer alternatively chronic aching and burning sensation, which is a horrific feeling. In fact, it's not uncommon for CMT patients to describe their feet is numb but painful contradiction that highlights how complex and uncomfortable this disease can be. Now, another thing to consider, particularly if you're thinking about applying for long term disability benefits, is that CMT is progressive. It worsens over time, although the rate will vary from person to person. Some people maintain the ability to mobility well into their middle ages, others will lose function earlier.
 
 Nancy Cavey [00:05:35]:
 Unfortunately, there's no cure and only there's symptom management, if you will, physical therapy and adaptive strategies. So why does this matter in the context of long term disability? Well, what starts as a mild discomfort can evolve into a complete inability to perform your occupational functions and when that happens, you need to understand how to prove that your condition meets the criteria for your specific long term disability policy or plan. So we're going to next talk about long term disability policies or plans and some of the common obstacles that people face when making a claim for short and long term disability benefits. Got it. Let's take a break. Welcome back to Winning Isn't Easy. We're going to talk about challenges improving a short and long term disability claim when you have Charcot Marie tooth disease. So we've talked about what CMT is and how it can affect both movement and sensation.
 
 Nancy Cavey [00:06:43]:
 But why is it so difficult to get approved for short and long term disability benefits with this diagnosis? Well, let's start out with a fundamental truth. Insurance companies don't care about the diagnoses. They care about your functionality. So even if your doctor confirms a diagnosis of cmt, that is not necessarily enough. The insurance company wants proof now. There is no uniform disability insurance policy or plan. And so you have to get out your policy or plan and read it. Cover to Cover One of the most important things you need to understand in the context of a claim is what the definition of disability is.
 
 Nancy Cavey [00:07:19]:
 Is it the inability to do material and substantial duties of your occupation? Is it the inability to do one or more of the material duties of your occupation? Is it being unable to perform your occupation as it's performed in the labor market? Is it your inability to do the occupational duties as described by the Dictionary of Occupational Titles? So you got to understand the definition of disability. You also have to understand the term occupation, remembering that there is no uniform definition of occupation either. Different policies, different plans define it differently. It might be occupation as you've performed it for your employer. Your occupation is performed in the local economy. Your occupation is performed in the national economy. Your occupation is performed consistent with the Dictionary of Occupational Titles. So disability occupation really key definitions.
 
 Nancy Cavey [00:08:15]:
 The other definition that you need to concern yourself with is any requirement for objective medical proof of disability. Because ultimately it's your burden to prove that you are disabled as that term is defined in your policy or plan and the level or nature of the proof that you need to submit. So one of the big problems that we have with CMT cases is the intermittent and invisible nature of the symptoms. A person with CMT can walk relatively normal in the morning and struggle to stand later in the day due to fatigue. They might be able to type or write briefly, but then they experience the cramping, tremors, or weakness that makes it impossible to sustain these tasks. What disability carriers do is they look at the medical records and they first look at the diagnosis. Okay, okay, they've got cmt, but what is the symptoms? What are the symptoms? Oh, they're able to, they're able to work, no problem. And then bingo, all of a sudden you're unable to work.
 
 Nancy Cavey [00:09:15]:
 The medical records have to speak to what is causing you to all of a sudden be unable to work and do your occupational duties. Additionally, your medical records have to address these good moments and these bad moments. In other words, disability carriers and plans will latch onto these good moments. For example, that morning where you start out great as evidence that you can work. Now, they may also go so far as to put surveillance on you. I don't want to frighten you, don't want you to be paranoid. But they may look at surveillance and say, you know what you said you couldn't do? What you told the doctor you couldn't do is inconsistent with what's on that video. They're also going to look at your social media accounts and they're going to be looking for documentation of physical activity that you've done.
 
 Nancy Cavey [00:10:02]:
 And even if it's minimal, they will use that to challenge the severity of your condition. So another obstacle is adaptation. People with CMT are often incredibly resilient. You find ways to adapt. You wear braces, you change how you work, you use voice dictation. But insurance companies and disability plans can use that against you, saying, well, if you've managed, you know, with accommodations, what's happened? Why have you stopped working? And again, your medical records need to document that. There's also the issue of specialized testing. Under the terms of most disability policies or plans, you have to get medical treatment that's reasonable and appropriate and generally by a specialist.
 
 Nancy Cavey [00:10:45]:
 Now, unlike some conditions where disability is easily confirmed through bud worker scans, CMT is generally in part diagnosed by nerve conduction study tests, EMG or functional assessments. So in cmt, ERISA disability claims, I know that the carrier of the plan is looking for nerve conduction study tests or functional assessments to document person's ability or inability to do their own occupation or ultimately any occupation. Now, because CMT is genetic and slowly progressive, many people will delay filing that application for disability until they're truly at their breaking point. And by that point in time, their earnings have declined, weakening their case. And that can be a problem because if you are trying to adapt and you reduce your hours generally to less than 30 hours, most disability carriers or plans say, well, too bad, so sad you're not covered anymore because you have to be what's called actively at work. And again, disability policies will define that differently. So let me give you an example. A software engineer with CMT might have kept working long hours despite foot pain, fatigue, and reduced sensation in the hands.
 
 Nancy Cavey [00:12:08]:
 Eventually, this software engineer says, I can't do this anymore. I need breaks. I have difficulty walking from the parking lot to my office or going to meetings, or even if I'm working from home, I'm falling all over the place and stumbling. And it's not just the dog. And when that claim is filed, I promise you, the first thing the carrier or plan is going to say is, well, you were doing this job for years. Why did you stop? Now it's really clear that there's homework that needs to be done by you. Even though you're trying to adapt and even though you're continuing to try to work, your medical records have to tell a story not only of your diagnosis, but your functional decline over time. So how do you build a case that's going to stand up to this scrutiny? We're going to go over that next.
 
 Nancy Cavey [00:12:59]:
 Let's take a quick break.
 
 Speaker B [00:13:01]:
 Are you a professional with questions about your individual disability policy? You need the Disability Insurance Claim Survival Guide for Professionals. This book gives you a comprehensive understanding of your disability policy with tips and to dos that will assist you in submitting a winning disability application. This is one you don't want to miss. For the next 24 hours, we are giving away free copies of the Disability Insurance Claim Survival Guide for Professionals. Order yours today@disabilityclaimsforprofessionals.com.
 
 Nancy Cavey [00:13:38]:
 Welcome back to Winning Isn't Easy. What are the best practices in an ERISA long term disability claim involving Charcote Marie tooth disease? In other words, how do you prove your claim? Okay, now we know that CMT can be incredibly disabling and we want to talk about making that decision to stop work and apply for benefits and what you should be doing before you do that and apply for your benefits. So let's talk about this in greater detail. Number one, I want you to focus on function, not just diagnosis. Your carrier wants to know how the CMT impacts your ability to work. So while the diagnosis is important, you need documentation that spells out your workplace limitations. Now, as I talked about in an earlier segment in this episode, it's really important that you understand the definition of disability and your occupation because we need to work backwards. We need to establish, for example, that you're unable to do the material and substantial duties of your own occupation as that term is defined.
 
 Nancy Cavey [00:14:48]:
 So let's say it happens to be a very liberal definition of your occupation as you perform it for your employer. I tell my clients, let's get out the employer's job description, let's have you look at it, and then let's have you write your own occupational description, because those two documents may not match. So once we have sort of a composite occupational description, what we want to do is think about the things that you can't do. Write that down. We want to think about the things that you have trouble doing. Write that down. We want to talk about the things that you're doing with adaptation and write it down. So, for example, can you stand or walk for more than 10 to 15 minutes without rest? Do you have difficulty climbing stairs, crouching or carrying items? Are your hands too weak to typewrite or lift objects? Does that difficulty progress during the course of the day? Do you have difficulty sitting? Do you have to get up and alternate sitting and standing because of the feeling in your feet? How often, how long? What are the cognitive requirements of your occupation? How does the physical dysfunction, including pain or the side effects of medication, impact your ability to do the cognitive duties? Write that all down, because ultimately you're going to be taking that to your physician and discussing with them why it is you can't do your own occupation and asking for support in the form of them filling out APS forms.
 
 Nancy Cavey [00:16:18]:
 Now, a letter saying you're disabled, by the way, is worthless, but you want to back into this proof and in doing so, you want to make sure that you are giving a really good interval history of the progression of those symptoms from visit to visit. And if the doctor doesn't have time to make a chart note or get all the things that are important, you want to ask that they put an addendum into your chart note where you have given them information about the progression of your symptoms and how those symptoms impact your ability to do occupational duties, with examples. Number two, we want objective evidence whenever possible. We want to see nerve conduction study tests and EMG studies that show the severity of the nerve damage and the location of that damage. You've got to tie together that objective testing with problems with functionality. Now, one way to do that is a functional capacity evaluation that can document what task you're having difficulty with. And if you're going to do that, obviously you want to select a friendly FCE provider and, and you want to provide them with information about your occupational duties and the problems you're having. Preferably you are represented at that point because filing an application A winning application takes planning and you want to make sure that you're providing this information not only to the doctor to have them endorse it that is consistent with the policy or plan terms, but that ultimately you're submitting it as part of an application.
 
 Nancy Cavey [00:17:48]:
 Now, if your claim has been denied and you're in the appeal process again, hopefully you're represented and an FCE can help with that. Another example of objective evidence is gait analysis or balance testing by a physical therapist who can confirm your instability and fall risk and difficulty getting up and moving around. Step three. I've alluded to this, but I'm going to pound on it again. Insistent medical records. You want your medical records to tell a consistent story. So that means regular checkups with your neurologist, physical therapist, pain specialists and notes, interval notes that reflect your current condition. Now I will tell you that most policyholders or plan beneficiaries get denied simply because their doctor's notes are too vague.
 
 Nancy Cavey [00:18:33]:
 Instead of the doctor's record saying patient doing well or no progression in their symptoms, the record should say hey, the patient reports foot drop, difficulty with stairs, uses a cane daily, and while they may be stable, they're having problems because of XY disease symptoms doing 1, 2, 3. That documentation will tell a story. Now I think step four is personal statements and journals. Don't underestimate the power of a symptom journal for a daily activity log. Now I'm not necessarily a big fan of daily logs. I think that that's depressing as all get out. I think more likely a weekly type log and the narrative should be a record to show that the day to day impact of your of your CMT is impacting you more than what your medical records are reflecting simply because doctors are in a hurry to take a medical history now. Even better is to have family, friends and maybe even co workers submit third party statements describing how your condition has changed over time and lastly as appropriate, having video of the problems that you're having.
 
 Nancy Cavey [00:19:53]:
 So but let's flip this so what are the common pitfalls to avoid? These are the kinds of mistakes that are hard to fix if those are made. Now. First mistake I think is delaying filing your claim until things are unbearable. That's going to make it hard to show a gradual decline and may even impact your benefit amount. Number two is not consulting with an experienced or risked disability attorney who can explain to you what the terms of the policy are and what the proof is. Number three is really not is not giving that good interval history of the decline in your functionality because again, carriers don't like the idea that you worked one day and didn't work the next. Now, if your claim has been denied, remember you're only going to have 100 days in which to file an appeal. And if you don't file it timely, you've screwed up.
 
 Nancy Cavey [00:20:47]:
 If you decide to sue, the court's going to say, well, too bad, so sad you didn't exhaust your administrative remedies. Now another thing that you need to understand is the carriers don't get cmt. Just because they read your file doesn't mean they're going to agree that you can't do your own occupation or any occupation. So you need to be proactive, clear and thorough. If the claim has been denied and you've appealed and they've upheld the denial, if you don't have an attorney at that point, you better have an attorney because you're going to have to file a lawsuit in federal court. Don't represent yourself. That's just as simple as that. Abraham Lincoln once said that a person who represents themselves as a fool for a client.
 
 Nancy Cavey [00:21:27]:
 You need to be proactive in finding an experienced CMT Arista disability attorney. And that attorney should obviously be helping you with the application, help you with any appeal. And if we're in the litigation stage, getting that administrative file from the carrier, I'm always looking for omissions. What did the carrier not consider in their denial? Or what do they poo poo or what do their doctors poo poo or ignore? So we don't want to let that kind of thing slide. We want to be very aggressive, not only in the application, but in the appeal, if we need the appeal and certainly if we're in federal court. So what's the wrap up today? CMT is a disease that may not widely be known, but for those who are living with it, it's deeply disabling, both physically and emotionally. So, so it's a progressive hereditary neurological condition. It impacts mobility, sensation, and particularly the use of your upper and lower extremities.
 
 Nancy Cavey [00:22:25]:
 Its symptoms can impair your ability to do your own or any occupation. But you have to tell this full story. Building a strong claim for short and long term disability benefits for CMT requires strategic medical documentation, symptom tracking, FCEs, maybe video statements and legal help. So if you are applying for benefits, don't be a hero. Be a wise person. Think about what needs to be done. What needs to be done is to get that policy or plan. Look at your medical records, give a good interval history and better yet, be hiring an attorney from the very beginning.
 
 Nancy Cavey [00:23:09]:
 It's hard to fix these kinds of mistakes after the fact. It's hard to fix medical records that don't tell the story. It's hard to fix a situation where the carrier is saying, well, you didn't submit the right proof and our doctors don't think you're disabled, or don't think that you have restrictions and limitations. Some of that can be fixed. But having a really good foundation for your claim really is the key to not only getting your benefits, but staying on on claim. Got it. Thanks for tuning in to this week's episode of Winning Isn't Easy. If you found this episode helpful, please take a moment to like our page, leave a review, share it with your family or friends, and by the way, subscribe to this podcast.
 
 Nancy Cavey [00:23:51]:
 That way, you'll be notified whenever a new episode drops. Join us next week for another insightful episode of Winning Isn't Easy. Thanks for listening.