Voice Disorders, Spasmodic Dysphonia, Their Relationship with Social Security Disability, and More with Guest Sue Payne

Welcome to Season 1, Episode 27 of Winning Isn't Easy: Navigating Your Social Security Disability Claim. In this episode, we'll dive into the complicated topic of "Voice Disorders, Spasmodic Dysphonia, Their Relationship with Social Security Disability, and More with Guest Sue Payne."

If you think a voice disorder is “just losing your voice,” think again. In this special edition episode of Winning Isn’t Easy, host Nancy L. Cavey sits down with Sue Payne to uncover the hidden challenges of living - and working - with spasmodic dysphonia and cervical dystonia. Sue takes us inside her journey: the moment her voice changed, proving her disability to Social Security, and how she turned her experience into advocacy through Dysphonia International. Along the way, Nancy breaks down the five-step disability evaluation, the role of Residual Functional Capacity forms, and why strong medical support can make or break a claim. This episode is more than a legal guide - it’s a story of resilience, perseverance, and the power of using your voice, even when it doesn’t sound the way it used to. Whether you’re living with a voice disorder, supporting someone who is, or navigating your own disability claim, you’ll find practical advice and powerful encouragement here.

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

One - About Sue and Her Story

Two - Sue’s Social Security Disability Journey and Medical Support

Three - Sue’s Tips, Advocacy, and Support

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: Long-Term Disability ERISA Claims. Give it a listen: https://wiedisabilitypodcast.buzzsprout.com


Resources Mentioned In This Episode:

LINK TO YOUR RIGHTS TO SOCIAL SECURITY DISABILITY: https://mailchi.mp/caveylaw/your-rights-to-social-security-disability-benefits

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


Need Help Today?:

Need help with your Social Security Disability 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 [00:00:11]:
 Welcome back to Winning Isn't Easy, our Social Security Disability version of our podcast, where we break down everything you need to know about navigating the Social Security disability claims process. I'm your host, Nancy Cavey. Before we get started, I have to give you that legal disclaimer. This podcast is not legal advice. The Florida Bar association says I have to tell you that. But now that I've done that, nothing will ever prevent me from giving you an easy to understand overview of the Social Security disability claims process, the games that are played, and what you need to know to get the disability benefits you deserve. So off we go. In this special episode, we're going to be exploring voice disorders.
 
 Nancy Cavey [00:00:53]:
 And as you can hear, I'm a little hoarse today and I'm going to be coughing my way through this episode. But. But our special guest has unique experience with a voice disorder and many times I deal with invisible conditions that can leave you wondering why a person is disabled. This is not that situation. Our special guest is Sue Payne and we're going to hear her powerful story of resilience and advocacy after being diagnosed with spasmodic dysphonia and cervical dystonia.
 
 Sue Payne [00:01:30]:
 And.
 
 Nancy Cavey [00:01:30]:
 And we're going to walk through Sue's real life experience from the day her voice changed to navigating the disability claims process and now becoming a dedicated advocate with Dysphonia International. And of course, since this is a Social Security disability podcast, I'm going to be talking about the five step sequential evaluation and the importance of getting a residual functional capacity form to impact the claim. Now, it doesn't matter whether you are living with a voice disorder or not, this episode is going to offer insight, practical advice and inspiration from someone who walks this path every day. So we're going to talk about three things today. I want you to hear sue and her story. Now, sue was kind enough to do this episode with us because we've already done one involving long term disability claims and it was so well received that I asked her to come back and speak about this in the context of a Social Security disability claim. And that's number two, we're going to talk about her Social Security disability claim journey. And then three, we're going to talk about Sue's tips, advocacy and support that she gets from not only her family and relatives, but from her support groups and her participation in support groups.
 
 Nancy Cavey [00:02:44]:
 Let's take a break for a moment before we really dive into this episode.
 
 Speaker C [00:02:48]:
 Are you considering filing for Social Security disability or has your claim been denied already? Either way, you require A copy of your rights to Social Security Disability benefits, which will cover everything you need to know about the Social Security disability claims process. Request your free copy of the book@kvlaw.com today.
 
 Nancy Cavey [00:03:24]:
 Welcome back to Winning Is It Easy? The Social Security Disability Podcast. Our special guest is Sue I and I want to have her tell you what life looked like before she began to have these voice difficulties, her career path, what were her goals, and then what happened ultimately on July 19th.
 
 Sue Payne [00:03:48]:
 Sure. Well, thanks again Nancy for having me on the podcast. It's been an honor to spread information about and ironically this is just kind of part of the journey. My voice is significantly worse now for no own reason. Before I started dysphonia I was heavily involved in teaching and training. I worked at a community health hospital and training education for the community, worked for a well, I was a wellness coordinator for a city coming to and worked with the mayor, city department and helped employees reduce their health care costs. And then for the last 13 years I was with a firm as a team manager, had about 13 direct deposits. During my time at State Farm, I was also in learning and development.
 
 Sue Payne [00:05:26]:
 So I did again it was coaching leaders, working with them, developing employees on how to succeed in their career path. And I truly enjoyed working if employees and coach them to be successful in their jobs. Working in auto claims of State Farm is a very stressful career path, but at the same time it's very fulfilling because you're able to help people in time of need.
 
 Nancy Cavey [00:06:18]:
 Well, obviously you are a significant influence in people's lives, not only being a coach and a teacher, but a role model with the many roles that you played. Training involves preparing, preparation, if you will, of written materials, but it also you doing what you're doing here today and that's talking and doing presentations. Can you tell us what happened to you on July 19, 2017 and how you ultimately came to understand that losing your voice was not something temporary like I'm having today, but it has really become a permanent lifelong condition?
 
 Sue Payne [00:06:58]:
 Sure. You know, hindsight is a always 2020 and I can remember prior to I was kind of having headaches. I was going through a really stressful coaching situation. I had not been but had been feeling a little off. And right before July 19, I was actually getting ready to go on vacation with my wife and pick up my parents to celebrate my dad's birthday. So I went to the airport, picked him up, no big deal. Woke up the next morning and I basically didn't have a voice. And so it was kind of like this is weird I had laryngitis, had the typical allergy stuff.
 
 Sue Payne [00:08:16]:
 So continued on our vacation, went to they dock in the box of urgent care and they diagnosed with fungal laryngitis with hemonic dysphoria. There is no known cause for true treatment. People like something triggered it. It's a neurological disorder. And so it could have been a fungal laryngitis. It could have been stress. They just don't know. Some people have gradual or gradual like and others have a time period where it continues used to get worse.
 
 Sue Payne [00:09:18]:
 After I got back on vacation, we went to an ent. I diagnosed a muscle tension. The muscles in your neck are extra spasmin. That's why sleep. And with now I'm having severe muscle tension episode. After I went to a. And that's really. And I started being able to understand and learn about dysphoria into a couple and eventually host an Ander Bell voice center and was diagnosed with spasmodic dysphoria.
 
 Nancy Cavey [00:10:23]:
 You know, the journey that you described is a journey that I see with my clients. And it doesn't matter if they have a physical condition like fibromyalgia, back condition or even a psychological issue. You can have a visual, if you will, impairment, if you will, that people can see. Some obviously aren't as obvious as others, but the journey that they go through is much like the journey that you just described. It is like I have these problems and they're real, but I can't either find the right doctor or I get a misdiagnosis. Or they say the more common thing is kind of all in your head. And so can you describe as you have what it was like navigating the medical journey till you ultimately got a diagnosis? And how did you keep your sense of self, if you will, in this whole process?
 
 Sue Payne [00:11:29]:
 You know, that is very difficult because sometimes my voice, like I said, is not this bad. So people look at me and they think I'm fine, which can be very frustrating, or they will say, you don't sound that bad. So it's. It's always a challenge to navigate it. And I think that has kind of been part of my journey that trying to educate people has helped me to be able to deal with it and to be able to handle the changes that happen. But I think really with my faith, with the support of my wife, my family, people really learning about their disability, that's what's helped most. And for one of the things, you know, you mentioned, sometimes physicians think it's all in your head. For me, you know, when we talk to ourselves in our head.
 
 Sue Payne [00:12:59]:
 My voice is normal. Oh, it's very. I never know my voice is going to sound like when I try and start to talk. So it truly is amazing what's going on.
 
 Nancy Cavey [00:13:24]:
 One of the things that amazes me about you is you obviously were a strong woman to begin with, and you navigated this challenge and there were obviously emotional issues. But when you found the right doctor who understood your medical condition, your diagnosis, and formulated in quotes, treatment plan, how did that finally make you feel? That, you know, you heard your own voice in your head, but that was what was coming out. But now you have an explanation for what's happening. How did that make you feel?
 
 Sue Payne [00:14:00]:
 Oh, it was a lifeline. The doctors who specialize in voice disorders become a part of you. And you see on a regular basis if Botox is successful for you, hence of a live life, helping you to be able to speak during critical times in your life. So for me, Botox was not successful. I had every type of combination from fillers and Botox injections. When they talk about Botox injection and the media and they. The wrinkles, and that's for us, we get a sculptor that goes down our nose to our vocal cords, and then they shoot lidocaine down your throat to numb it. And then they put a needle in and it goes through your larynx to the backside to try and get to a muscle that is the thickness of a piece of paper.
 
 Sue Payne [00:15:33]:
 So it is very uncomfortable and you're awake and you're trying to sniff and you're trying to say words so they can get that muscle. So it's painful to go through. And when it's not successful, it's very difficult to manage.
 
 Nancy Cavey [00:16:00]:
 So that brings us to, I think, a very, very important two points. One is you and your physician were a team, but how did your support network help you go through this treatment? Your response or lack of response to treatment and dealing with. Well, this may be the range of my voice during the course of my life.
 
 Sue Payne [00:16:23]:
 Right. And you're exactly right. It is such a big partnership with. Because finally my laryngologist said, sue, I just. It's just not working for you. And so I think we need to stop. Because it wasn't successful. My wife, my parents went to injections with Carrie, went to injections with me.
 
 Sue Payne [00:16:55]:
 And just being there, and we were just talking this morning about Carrie and I about going through it right now. It's very emotional roller coaster. And because of the support network I have, I'm able to not be that strong person that I can show my motions, cry if I need to. And that has been my lifesaver, actually, to just be able to go with the flow because it is scary to try and think about going to another to see what's going on right now. Do I need to try Botox again? Where's this my new normal? Right.
 
 Nancy Cavey [00:17:55]:
 Well, that's very powerful and I'm glad that you've got that support network. Let's take a break and come back because I want to talk about your Social Security disability journey and your physician support for your Social Security claim. So let's take a quick break. Welcome back to Winning isn't Easy. Let's talk about Sue's Social Security disability journey and her medical journey in the context of this claim. So I am presuming that pretty quickly your voice disorder affected your ability to work and that led you to to pursue not only short and long term disability, but Social Security disability. And so for those of us who live in this world every day, but you, as now experienced, but then a newbie, what was your experience like at the application stage and what challenges or surprises did you see, particularly with the social screening disability system?
 
 Sue Payne [00:19:06]:
 Well, it, you know, I don't think anybody ever thinks you're going to be on any kind of disability. That was not my vision of my life. So for me, short term disability started after I think it was six or seven days of pt episode one, dramatically in the short term. Once that ran out, I went into long term disability, which was a benefit from State Farm. And then that company helped. And at that point it was they helped with the Social Security disability and was coordinating those benefits. What was really from not really understanding the process? I got a denial from Social Security before they had my paperwork right. And it was fearful.
 
 Sue Payne [00:20:22]:
 I didn't know what was going to happen. And thankfully, the disability company handled the appeal process and I went to the Social Security office in Atlanta and they helped me understand the process a little bit more because I couldn't pick up the phone to talk to them.
 
 Nancy Cavey [00:20:52]:
 So as a short and long term disability attorney, I know that most policies require that a policyholder plan beneficiary apply for Social Security disability benefits. Them will have advocacy companies that will represent people. I am not a fan of those for lots of reasons. And I think your experience sort of bears that out because ultimately, as I'll talk about in a moment, I'll be talking about the five step sequential evaluation process and the relationship with physicians. The whole process can be very challenging. It can be Confusing. And then when you get that denial, it can be devastating. Now, one of the most important things, in my view in a Social Security case is to have the support of your physician.
 
 Nancy Cavey [00:21:42]:
 And it's not writing a letter saying you're disabled because that doesn't count. But can you talk to us about your dealings with your physicians and getting their support for your claims?
 
 Sue Payne [00:21:53]:
 Yes. At that point I was seen by Atlanta and they have many, many patients, both on Social Security disability, long term disability or not. Because some people continue to work, correct? Botox is successful, then they can, you know, they may need some accommodations, but they can continue to work. For me, it just wasn't successful. And that was part of the fear of stopping Botox was, is that me giving up? Does that mean that I won't be still covered? But because of the support of my doctor, Dr. Klein, he enabled a tupe able to be supportive or document in the process. At the same time, I had to educate my other just regular doctors on what Passmont was and how it did impact my life. So it was kind of using Dr.
 
 Sue Payne [00:23:18]:
 Klein as my primary physician to support my claim, but also getting the support from the other caretakers in my life.
 
 Nancy Cavey [00:23:28]:
 Dr. Klein sounds like a fantastic physician. Now, in the world of Social Security and short and long term disability, there are different standards of disability. Because this is our Social Security podcast, I'm going to talk about the Social Security five step sequential evaluation. But what you have to prove, number one, is that you have a condition that will last a year or has lasted a year, which will result in your death. Two, that the condition is not just temporary in nature like a sprain or a strain. At step three, the Social Security administration has a big book called the listing of Impairments or the Blue Book. And literally you can open up the book.
 
 Nancy Cavey [00:24:07]:
 It's based on body systems, so they have a section on cardiological issues, pulmonary issues. They even have a listing for basically voice impairments involving speeches and senses. And what we do is we literally open up the listing, if you will, to the elements and then look at the medical records to see whether or not your medical records document the elements of the listing. Now, I'm sure you know, sue, that more often than not, doctors didn't take a class in medical school to learn how to write a report for Social Security purposes. Purposes. So this kind of situation sue has is a listed condition. And I don't know if her benefits got awarded at step three, but if not, we would move on to steps four and five. And at step four, the Issue is, can you go back to the lightest and simplest job you held in the five years before you became the claim was adjudicated.
 
 Nancy Cavey [00:25:05]:
 Now, clearly you can hear from Sue's voice that she would not be able to do the kind of work she did in the past, doing training, doing presentations. So that's, you know, fairly easy. Where these cases are won and lost is at step five. And depending on your age, you know, if you're over 50, it's a little bit, little bit easier. But the general test is, is there other work in the mythical hypothetical, not real world national economy that you wouldn't want to do? It doesn't pay a living wage in view of your age, your education, the skills you've learned in the past, and whatever your restrictions are. So I will use sue sort of as an example. Many times Social Security will say, hey, we think you could do a simple routine job like sorting nuts and bolts or addressing envelopes all day. You can do some form of a sedentary job and therefore you're not disabled.
 
 Nancy Cavey [00:26:03]:
 Now, as I've said, age is a factor. The older your age, over 50, potentially you can meet what's called the grids and grid out, or we go through this cockamamie test. I am sure in Sue's case, what she did because the doctor helped her with her short and long term disability case, was to have the doctor fill out some forms. Now, we Social Security lawyers have created, I think about 75 different kinds of forms, and my job is to pick out the right form that will match the medical condition. So in Sue's case, I would have done a cervical spine residual functional capacity form because we have the cervical dystonia issue. And I would have done a voice residual functional capacity form. The reason you do that is you have to quantify the restrictions and limitations because ultimately, as I've said, the game is to prove that you can't even do a sedentary job. And even in Sue's case, she would have difficulty doing a job sorting nuts and bolts because she would have to communicate with her co workers and her supervisors and communicate effectively.
 
 Nancy Cavey [00:27:13]:
 And if you can't communicate, then you can't necessarily maintain the pace or production. And because of the nature of her dysfunction, there might be some days where she has no voice and she would stay at home so she couldn't meet the attendance requirements. So that gives you a little overview of the five step sequential evaluation process and how it might have been applicable in Sue's case. Let's take a break before we come Back and we're going to talk about Sue's tips advocacy and her support group that she works with around the world. Let's take a break.
 
 Speaker C [00:27:49]:
 Struggling with your Social Security disability case. The right attorney can make all the difference. Get our booklet the key to hiring a great attorney attorney for your Social Security disability case. Discover how to find an experienced attorney who will fight for your rights and navigate the process with ease. Don't leave your future to chance. Request your free copy@kvlaw.com today and ensure you have the expert support you deserve.
 
 Sue Payne [00:28:24]:
 Foreign.
 
 Nancy Cavey [00:28:30]:
 Welcome back to Winning isn't Easy. Now sue and I have done another podcast involving short and long term disability and one of the great things that I learned about in that podcast are some interesting tips, advocacy and her involvement in support groups. So sue, what advice would you give to someone who's newly diagnosed with a voice disorder? Trying to understand what comes next?
 
 Sue Payne [00:28:58]:
 Sure. I think the biggest help you was find that good doctor and just who can help you. And one way to find good luck is to go to dysphonia.org and it is Dysphony International and I am a proud supporter of the organization. And the website that we have is altcoin us and helping us find resources and a couple of key things is that you can identify and find a mental or state. You can find what abductor dysphonia sounds like and it helps a good physician that can be there. We also have these support groups that some really good things came out of COVID and one of those is the video world. And so anybody any place can join a support group is virtual or in person and they're in basically every state almost every day or three or four times a week There are support group meetings that are just people like us that have dysphonia that can have that support.
 
 Nancy Cavey [00:30:55]:
 Well you know there's more to dysphonia than just having the voice issues. There is some mostly there's that also cervical component but you have problems with for example migraines. I want our listeners to understand that it's just not a voice disorder but there's a complex of symptoms that are associated with the disorder. And I would hope that on the website that that's addressed. But there also are physicians who are sympathetic to and are participating in the care of this voice disorder and its associated symptoms. Would that be correct?
 
 Sue Payne [00:31:36]:
 Yes. Like for me my just referred me to a functional neurologist helped diagnose the herbicondist. Yeah. So their partnership is key. And on the website we have A medical board that is gathers the top researchers around the world to look at research projects we could possibly fund and research. So because in the United States there are about 50 to 60,000 people with spasmodic dysphonia, which is very rare. So there aren't a lot of research dollars. And when you throw my type in, which is mixed abductor adductor muscle tension and the research opportunities are even smaller.
 
 Sue Payne [00:32:49]:
 So there are some really cool things that are coming in the future. We're working on this now. Because of my advocacy work, I'm literally helping to fund, which gives me an opportunity to have stay in to what's going to happen my life. You know, I don't want this to be my normal. I want treatment, I want a cure. So that way I can even be more involved in the dysphonia tower.
 
 Nancy Cavey [00:33:28]:
 It sounds like you've got an advocate in the background for you. So for someone who's thinking about joining a support group or being an advocate for themselves, what would you say to them? And perhaps your partner can give some advice too. What the dog has to say.
 
 Sue Payne [00:33:50]:
 He's a big boy too. They can go to again dysphoronia.org and there's a count or that they can just sign up and register. They can also look for what we call an area contact leader, which is another opportunity that I advocate for that is available to speak if they live in Florida and they're newly diagnosed and they click the link that says, I want to talk to somebody in Florida that has spasmodic dysphoria. And we have a coordinator that will contact me and we will then communicate, whether it's email, text or me. And just the weekend I followed up with one of my friends, Evelyn, who helped me find a doctor here in Florida. So it's very much a give and take relationship. And I tell you, there's nothing more powerful than finding somebody who talks like you and understands emotional and psychological feelings you go through and you can't communicate.
 
 Nancy Cavey [00:35:22]:
 What I'd like to close with is this thought. I know that you have paid a price today for just participating. I'm sure you're going to take a break. You probably have migraine. But in closing, obviously you're a woman of great courage and passion. What's the advice? If you could give people who have voice disorders just words of advice or encouragement, what would that be?
 
 Sue Payne [00:36:02]:
 You know, this is going to kind of sound hokey, but we truly can't give up. And if, if we're brave enough to do this sort of thing to put ourselves out there. Then that's how we're gonna get awareness and stop the stigma that we're sick or that we're faking it or whatever. So not giving up. Get involved with dysphonia.org because it's an amazing, supportive organization. In October, we have our Walk for Talk and that is a weekend that creates an amazing energy of support fellowship that just highlights what we go through on a daily basis with waste disorders. And you're not alone. There are people out there that will be supportive and know is an amazing organization.
 
 Sue Payne [00:37:24]:
 I'm very fortunate to find him and it just we have to continue to fight to help us to find a cure and for additional treatment options and educate other physicians so they can help identify voice disorders because most don't know what a voice disorder even is.
 
 Nancy Cavey [00:37:52]:
 You're inspiring.
 
 Sue Payne [00:37:55]:
 My honor, my privilege.
 
 Nancy Cavey [00:37:57]:
 So I want to thank our audience for tuning in today for this week's episode of Winning Isn't Easy. And a special thanks to our special guest, Sue Payne, who has shared with you her journey and given us some really great information about support groups, but also really given us some wise words, if you will, to live, even if you don't suffer from a voice disorder. If you found this episode helpful, please take a moment to like our page, leave a review, share it with your family and friends, and please subscribe to this podcast. Join us next week for another insightful episode of Winning Isn't Easy. Thanks for listening.
 
 Sue Payne [00:38:38]:
 Thank you, Nancy.