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ReAudio: ReAssess Your Workers Comp Toolbox
Empowering Voices in the Muscular Dystrophy Community
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Join us as Mindy Henderson, Vice President of Disability Outreach and Empowerment for the Muscular Dystrophy Association (MDA), shares her inspiring journey with spinal muscular atrophy. Mindy offers a profound understanding of living with a neuromuscular disease, the impact of family support, and the transformative role of medical advancements. She also highlights MDA’s critical support, discusses her book "The Truth About Things that Suck," and the film "Good Bad Things." Plus, hear about her upcoming advocacy efforts in Washington D.C., emphasizing the importance of awareness, research, and civic engagement for individuals with muscular dystrophy.
Click the link to purchase tickets to stream “Good Bad Things”: veeps.com
Learn more about MDA at www.mda.org
Living With Muscular Dystrophy
Speaker 1Perspective . Perspective is spelled P-E-R-S-P-E-C-T-I-V-E . Perspective the 30,000 foot view . Perspective put on someone else's shoes . Perspective can also refer to the state of existing in space or one's view of the world . Perspective R-E-A audio Reemployability .
Speaker 2Have you ever imagined what it would be like to live in a wheelchair your whole life ? How would you feel to not be able to walk upstairs or even out to the mailbox ? Imagine if you never had the ability to walk or use your legs and as you got older , the muscle weakness spread to your arms , then eventually to your lungs , making it difficult to breathe . Those are conditions that many people with muscular dystrophy live with , some as babies and others beginning as teens or adults . September is Muscular Dystrophy Awareness Month , and I've had the immense pleasure of speaking with Mindy Henderson , Vice President of Disability Outreach and Empowerment for the Muscular Dystrophy Association . Mindy not only does incredible work for MDA , but is a personal inspiration as well .
Speaker 1According to Mayo Clinic , muscular dystrophy is a condition that causes muscle weakness that gradually gets worse . It's caused by problems in the genes that help protect muscle fibers from damage . Symptoms of the most common type of muscular dystrophy begin in childhood , mostly in boys . Some types of muscular dystrophy don't surface until adulthood . Treatments focus on managing symptoms and slowing the course of the disease .
Speaker 2Muscular dystrophy . Tell us a little bit about what muscular dystrophy is and how it affects people .
Speaker 3So muscular dystrophy , it's an interesting question because you would think it's a very simple question . But there is an actual condition called muscular dystrophy . But muscular dystrophy is also more broadly used to talk about the family of neuromuscular conditions and if you extrapolate out all of the different types and subtypes and variations and things , there are several hundred types of neuromuscular disease and muscular dystrophy is really sort of that umbrella group that holds them all together and that people will refer to a lot . And the Muscular Dystrophy Association is actually the only organization of its kind that supports the entire community of neuromuscular conditions the entire community of neuromuscular conditions .
Speaker 2So , mindy , when we were talking yesterday , we got through three quarters of our conversation before you revealed to me that you have a form of muscular dystrophy , right , and you've had it since you were a child , is that right ?
Speaker 3That's true . I have a form called spinal muscular atrophy and there are several types . I have type two and I was diagnosed when I was only about 15 months old , and so you know it's . There are different ways to look at disability . I am a wheelchair user and have always been . I've never really stood or walked , and so it's really what I've always known , it's what I've built my life around , and so you know , in a lot of ways I think that that can be almost a blessing . I know so many people and there are a lot of other neuromuscular conditions that have an adult onset and you know I've , you know I've played that out in my mind so many times just that experience and how much harder it might be , not that this doesn't have its hard moments , but how much harder it might be once you are . You know , live a certain lifestyle for your entire life , and then to lose that function is quite devastating in a lot of cases .
Speaker 2So is there primarily ? Does it begin with children ? You know , again , you mentioned there's hundreds , right , so it's really hard to nail down specifics as to you know what types of symptoms there are , but I imagine they're all related in several ways if they're all kind of grouped together by MDA , correct ?
Speaker 3Right that is true , and you know , it really does run the gamut there . Just within spinal muscular atrophy alone , I mentioned the different types , and the different types are really um , one of the things that they're indicative of is the age of onset , and so type one is , you know , oftentimes , at birth , um , it can be um , observable , um , my type is sort of um toddlerhood I think I just made that word up and then there are also adult onset forms of spinal muscular atrophy . So you know , and that's just within that one disease class , disease class . So you know , there are a lot of other conditions that are , you know , run the gamut in terms of mild and severe and age of onset and just everything you could possibly imagine . And one thing that's really cool is that you know , I work for the Muscular Dystrophy Association and they have been my family my whole life .
Speaker 3I was an ambassador for them , starting when I was about four years old , and so I grew up alongside of them . They were incredibly supportive of my family and me as I grew up , and one of the things that I think a lot of people don't know about the Muscular Dystrophy Association is that it was the individuals working for this organization and working with the scientific community that defined the field of medicine , of neuromuscular medicine , that there was not such a thing 75 years ago . So I find that an interesting little factoid .
Speaker 2Yeah , if it weren't for MDA , probably some of the treatments that you've undergone wouldn't have been possible , right , which is why they're such a close family , right .
Speaker 3Yes .
Speaker 2Can you tell us a little bit about spinal muscular atrophy ? Is there pain involved ? What happens ? How are you personally affected ?
Speaker 3Yeah , it's not . In my particular case there , fortunately , is not a lot of pain involved . You know , I think any time you're sitting all day long , every day , you know you develop some issues with your hips and your joints and your spine and things like that and that can ebb and flow a little bit . Some of those sort of ancillary issues that creep up can be , you know , cause a little bit of discomfort or pain from time to time . But spinal muscular atrophy is a progressive condition so it has gotten worse over the course of my lifetime and you know , really there's not a super reliable way to predict how much it's going to progress . It does vary a lot from person to person . I could get into a little bit of the science of it , but I think I would probably even bore myself . But you know there are a lot of things under the hood , so to speak , that affect the severity and how quickly it progresses or doesn't progress and what sort of issues you're going to go on to have .
Speaker 3In most cases with spinal muscular atrophy , because of the weakening of the trunk muscles and things , you develop scoliosis . That in a lot of cases has to be corrected . It did in my case and that was a really tough surgery when I was about 14 years old . You know other hip and bone issues because of the lack of weight bearing and things of that nature , and so really just about every muscle in my body , um , is affected , and so I have limited use of my arms . Like I said , I don't stand or walk , and yet I am a fiercely independent person . I always say that whoever created me had the best sense of humor , because I was created with these limitations that make me dependent on people . But I am fiercely , fiercely independent and have a great support system and have worked really hard to create a life where I can work and drive and have a family and all of those things .
Speaker 2On REA Audio we talked to a lot of people that have overcome tremendous circumstances and you know whether it's something that is a disease , a progressive disease that they that was of no fault of their own , or if it was of an accident , you know , whatever it is .
Speaker 2When we talk to these people then I think the number one thing that always stands out in my mind is those people that have overcome those tremendous odds always have a tremendously positive attitude and obviously you know it comes from you as well . I mean , you just emanate that and I know that this is all audio , but if folks could see your background , it's incredibly uplifting and positive and just comfortable . And you talk about your support system and I know that that's always important in the process of somebody and I'm sure it wasn't always like this for you . You know ups and downs and I can imagine going through life as a child and into your teen years has got to be tremendously difficult . But I'm curious , mindy , is it something that you think you were just blessed with inside that attitude ? It something that you think you were just blessed with inside that attitude , or is that something that you realized that you had to work on and is a very conscious effort that you have to look at every day .
Speaker 3You know , I think some of both and you know , first of all , thank you for that . You know I certainly have my days where I don't feel as happy and smiley
Family Influence and Medical Advances
Speaker 3. I think that I really genuinely did get lucky with the family that I was born into , because you know , they made the decision . You know my parents when I was diagnosed and I mentioned that I was just a baby . You know I was 15 months when I was diagnosed and they were told at the time because so much less was known about this condition , that I probably wouldn't live to be three . And the doctors told them , you know , there were no treatments , no therapies , no cures and , honest to goodness , they said this to my parents to take me home and let me be happy with the time that I had and my parents , being who they are in their infinite wisdom , decided that they were going to fight for me and , despite what the doctors said , they did physical therapy with me and you know they didn't . Let me ever make excuses for things I didn't want to do just because they were hard .
Speaker 3You know we lived in a and I swear my parents were fantastic , still are fantastic people , but you know we lived in a two-story house and my mom would help me , you know , kind of crawl , shuffle myself up the stairs , and I'm sure that that gutted her and was probably an incredibly difficult thing for her to sort of make me do .
Speaker 3But I think it instilled a mindset in me at a very young age that nothing was going to be different for me . And you know , I may have to do things differently , but the outcomes could be the same . And so I grew up just sort of almost taking for granted that I could have and do anything that I wanted in life . I knew I was going to have to work for it and I certainly did . But you know I really credit my parents with that kind of outlook on things . But you know , like I said , I've had times in my life where I've had to make conscious decisions about who I wanted to be in this world , and did I want to be angry and bitter or did I want to be happy and make the best of things ?
Speaker 2Well , you've obviously made that second choice , and in a very conscious effort to do so More often than not .
Speaker 3Thank you .
Speaker 2For sure . So talk to us a little bit about some of those treatments that you had to undergo that are because of the Muscular Dystrophy Association .
Speaker 3Yeah , so I did grow up having to do all kinds of physical and occupational therapy and let me tell you , when I was a kid , I was a pill about it . I did not enjoy it and I feel so bad . If any of my former physical therapists are listening , I apologize , but I was your typical eight-year-old that wanted to be outside playing and not doing physical therapy . But I was your typical eight-year-old that wanted to be outside playing and not doing physical therapy . But yeah , you know you spend all of this time sitting and so you have to do things to keep your body limber and to avoid developing contractions and you know all of those sorts of things and maintain as much strength as possible , and so that was one thing .
Speaker 3I had a number of surgeries . I had some hip dislocations because of the muscles' ability to support the ball in the socket and things like that my spinal surgery , it and things like that my spinal surgery . But to answer your more specific question , there were no treatments for this condition until about eight years ago . I want to say and I remember this like it was yesterday , I will never forget it , because obviously you grow up hoping for something , you know , some miracle to come along and it was December 23rd . And you know , eight years ago , whatever , I guess , what was that 16. ?
Speaker 2Yeah 2016 .
Speaker 3And yeah , and we had just had some friends over for sort of a pre-holiday dinner and they had left I got into bed and pulled my laptop in with me and was going through email and there was an email and the subject line said first treatment for SMA approved by the FDA .
Speaker 3And this was before I was working for MBA . I had heard through the grapevine that there were some promising things in the pipeline , but that was the first moment that I knew that there was something and I just started to cry and it was . It was the miracle that I had hoped for for so long , you know , to go for , you know , 42 years with absolutely nothing that anyone can do about this . It was quite something . And now there are actually three therapies on the market now for SMA . I've switched and I'm taking a second therapy , but there's also a gene therapy that's available , for I think it's children under the age of two who are diagnosed and , you know , in a lot of cases it can help prolong or even avoid a lot of the symptoms of SMA for a very long time .
Speaker 2Wow , and that's all because of funding made by MDA .
Speaker 3Yes , mda has been such a champion of . You know , one of their , their big pillars is is science and research and trying to get to the bottom of these diseases , and all of them are considered rare diseases and so it's it's an area that is so expensive to develop therapies in , and you know that funding is critical and they are absolutely brilliant and the network of scientists and researchers that they know and work closely with and the work that they're funding is so exciting .
Speaker 2So as the so you're the vice president of disability outreach and empowerment . You're also the editor in chief of MDA Quest Media , which includes a whole bunch of stuff , so you are super , super busy in helping to get the word out about muscular dystrophy and the muscular dystrophy association . So you have an integral part in making people aware of , you know , muscular dystrophy as well as their ability to be able to help that . So talk a little bit about this month . September is traditionally muscular dystrophy awareness month . How is MDA involved and what are some of the things that you're doing to bring attention ?
Speaker 3Thank you for that . Yeah , mda , we have such a crazy month planned and they really hit it hard during the month of September for Muscular Dystrophy Awareness Month , and they are , you know , it's really all hands on deck to do fundraising , to create awareness , to do outreach . We've got programs running all the time for people . We just finished up with our summer camp series , which is a huge piece of the MBA ecosystem , so to speak . It's where I went for eight years every summer that taught me about the possibilities for my life , and they're doing education constantly . We have a great education team .
Speaker 3I know I'm forgetting a thousand different things , but we've got campaigns running and things , and we have a lot happening with Quest Media . We've really sort of transformed the Quest Media platform into an adaptive lifestyle platform , and so my hope is that we still cover a lot of the science and research of neuromuscular disease , but we also have started branching out into things like accessible travel and adaptive fashion , employment , education so many different areas that span far beyond the boundaries of the neuromuscular community . I hope that there are a lot of people listening who could also potentially benefit from the content that we put out there . So there's a lot happening and I would encourage anyone to go check out the MDA website or MDAQuestorg .
Advocacy and Awareness for Muscular Dystrophy
Speaker 2Now you wrote a book right called Good Bad Things .
Speaker 3No .
Speaker 2So actually you've done your research .
Speaker 3Though Good Bad Things is . I'm so glad you brought this up . This is one of my favorite things right now . I feel like Oprah . Right now I feel like Oprah .
Speaker 3Good Bad Things is a film that was co-written by a gentleman with neuromuscular disease . It was executive produced by a gentleman named Steve Way , with neuromuscular disease , starring Danny Kurtzman , who has neuromuscular disease , and so it's really kind of the first of its kind to be seen on the big screen and it's getting so much traction you can go to Veep actually and watch . There's going to be a virtual streaming event with Q&As , and I think I heard there's going to be a stand-up comedy routine and all kinds of fun stuff the weekend of September 20th through the 22nd , and 25% of the proceeds of that will go to MDA . So that's . I got to go to the premiere of it in LA a couple of weeks ago .
Speaker 3It's such an exciting project and so I'm really glad to have a minute to talk about it . You know , and there's so little , in a lot of ways , hollywood has really opened its doors to telling a lot of . You know a much broader variety of stories and people and all of that , but I think that disability is still the most underrepresented and misunderstood minority in this country and that's reflected on the screen . And so this film I think everybody sees it as kind of a pioneering project that will hopefully change the landscape in Hollywood .
Speaker 2So forgive me for that confusion . I know you wrote a book and the title is similar , isn't it ?
Speaker 3I did write a book . The book is called the Truth About Things that Suck .
Speaker 2Okay , well , I got the bad things and the suck there .
Speaker 3That's a great title , yeah no , you were very close and the book is . You know , you can probably tell by the title that I took . I tried anyway to take a bit of a humorous slant on , you know the sucky things that happen in our lives and and you know there are days when I don't mind my disability , there are days when I embrace my disability , but there are certainly days that it has sucked . And each chapter in the book is something that I feel like so many of us go through In addition to disability . There's a chapter on unemployment and there's a chapter on unemployment and there's a chapter on loneliness and you know so many shame and so many different things in life and these are all things that have shown up in my life in one way or another and it's really sort of looking at them and the lens and the perspective that I've learned to look at them through .
Speaker 2Now you're headed to Washington DC next week for a special thing that's happening and I can relate a bit . My daughter has type 1 diabetes and when she was younger she and I went to Capitol Hill and spoke to Congress , Because a lot of people don't understand that there is funding that comes from the federal government for things like muscular dystrophy , type one diabetes . But that doesn't just happen . You have to write , you have to lobby for that , and I'm not going to get political here . I just want to say one thing there's a lot of money that our government spends things on and there's a lot of money that I feel like they probably should spend things on , things right .
Speaker 2So it takes people like you going and telling your story . Tell us a little bit about what MDA on the Hill is .
Speaker 3Yeah , well , thank you for that again and thank you for you and your daughter spending your time that way .
Speaker 3Mda on the Hill is we are .
Speaker 3I think we have about 75 advocates I'm one of them who are headed to Capitol Hill on Tuesday and there are three different bills that we're going to be there to talk to lawmakers about .
Speaker 3We're all sort of fanning out and talking to people from the states that we hail from , so I'll be talking to senators and representatives from the state of Texas and really just telling our own personal stories about why these bills matter and how you know what kind of impact they could have on this community and , to your point , why the money should be spent to put behind them . And also , while I'm there , I'm super excited to be getting to go to the White House for the ADA's 34th anniversary . They're doing a reception and I think , if I play my cards right , the president's going to be there making some remarks . So I'm very , very excited about that and you know it's an honor to be going and doing these things , but it's my second time going to the Hill to speak to lawmakers and it is an overwhelming feeling I'm sure you felt it just to be there in that building and to feel like you're part of the solution .
Speaker 2It's a sense of empowerment , realizing that you know , as Americans , that that's our , those are our people . They work for us .
Speaker 3Right .
Speaker 2And we have the absolute right to go visit them in their offices and talk to them about what it is that's important to us and concerning to us . Right , and we have the absolute right to go visit them in their offices and talk to them about what it is that's important to us and concerning to us . And anybody that may be listening that may have some kind of a you know relation to someone with muscular dystrophy or someone who just believes in the cause . You don't have to go to Capitol Hill to lobby your congressman or congresswoman . You can send them an email and say , hey , you need to support these bills that support muscular dystrophy , right ?
Speaker 3Yeah , and I'm so glad that you said that , because our voices matter so much more than we think that they do . And , to your point , email them , call their offices and you know in a lot of cases you may wind up on the phone with someone on their staff who has their ear . You know you may not get to speak to a senator , but they listen to the people on their staff and you know . The other thing that I'll say is please vote . We've got important elections coming up in a couple months and , regardless of what your beliefs are , it's important to go and vote and make your wishes known about what kind of country you want to live in .
Speaker 2Yeah , absolutely , you are doing a phenomenal job . I also didn't mention you have a podcast . What's the name of your podcast ?
Speaker 3Ah yes , quest Podcast is the podcast that I host for MDA , so I would love for anyone to listen and and subscribe and leave a review there .
Speaker 2So if anybody wants to participate in any of the things that are happening throughout September for Muscular Dystrophy Awareness Month , obviously visit the MDA website . There's ways that you can donate your time and money , I'm sure . What are some of the other ways people can participate ?
Speaker 3Honestly , I think one of the most fun ways that people can participate is by grabbing a couple of virtual tickets to good , bad things . Like I said , 25% . The tickets are $19.95 , I think , but you're going to get so much more than the movie . You're going to get interviews with the cast that are live Q&As , entertainment so much and it's . You know . There's not a much easier way to raise money for , for a cause or to show your support .
Speaker 2Mindy , anything else we need to talk about before we wrap things up . Your story is really , really inspirational and it's amazing how you know when you reach out , when we try to plan these webinars , these podcasts , you never know what you're going to get , and I've been so fortunate and so blessed to really get people who like live what it is that they preach , and you are absolutely one of them , and I feel so fortunate to have the opportunity to meet you and I hope we can talk again .
Speaker 3I hope so too . It's been an absolute pleasure to meet you , and I am thankful to you for having me on .
Speaker 2Yeah , absolutely , mindy . Thank you , we're going to put the link to that website in order to get tickets for the movie , and also to the MDA website if folks want to make donations or donate their time . So it's Muscular Dystrophy Awareness Month . Be aware and do what you can . Thanks , mindy .
Speaker 1Thank you . According to Mayo Clinic , muscular dystrophy treatment can help prevent or reduce problems in the joints and spine . Certain medications can boost muscle strength . Special exercises may improve a joint's range of motion and flexibility . Some people may need braces , canes , walkers or wheelchairs to get around . As lung muscles weaken , you may need a machine that helps push oxygen into the lungs , especially while you sleep .
Speaker 2I'm going to do this and I invite you to do it as well Next time you see someone in a wheelchair . Don't just see them . Try to empathize with them . What is their day-to-day like ? And try to transfer that empathy to an injured worker you communicate with or are currently responsible for . Remember there's a human being behind the number on that spreadsheet . Thanks for listening to REA Audio . Please make sure to follow us on Spotify or Apple Podcasts or Stitcher or wherever you get your podcasts . We appreciate you . Have a great rest of your week .
