Glass Half Full with Leslie Krongold, Ed.D.

Tag: muscular dystrophy

  • Physician with Muscular Dystrophy Champions Genetic Testing

    Physician with Muscular Dystrophy Champions Genetic Testing

    Dr. William Lowery, a practicing pulmonologist at Alameda Hospital in Northern California, was diagnosed with Limb-Girdle muscular dystrophy some 20 years ago. He’s now founded a non-profit organization to help others shorten their diagnostic odyssey with free genetic testing and his expert guidance.

    Below are un-edited portions of the interview with Dr. Lowery:

    I was biopsied at Duke University because actually ten years prior to that, my mom had rounded up. My dad had the same condition, a limb girdle muscular dystrophy. His dad had it. And as far as we knew at the time, I was the only one of five children that that showed any sort of weakness. And so my mom somehow got in touch with Duke University and rounded up all these relatives in the Lowry Family Tree, who had this late onset limb girdle muscular dystrophy. And then so Duke said, Look, we need a muscle biopsy. Will somebody come forth? And so I flew from California to Durham, North Carolina, and had a left leg muscle left leg muscle biopsy. And there they found that it was an inclusion body myopathy. So that was kind of an unusual that was kind of a red flag for a muscular dystrophy because there’s several types of inclusion body. But it they finally got together with a finish, a group of Finnish researchers and Italian researchers who had families with the same sort of inclusion bodies. And together they found that it was a gene variant on the the DNA Jbe six mutation. It’s on chromosome seven. I forgot where it is and that, but they were able to put that on the map, and that was probably back in two thousand five. And since then, there’s been a genetic explosion in being able to arrive at a genetic diagnosis. And maybe, you know, you wouldn’t need a muscle biopsy if you had the genetic diagnosis. So basically, I would say probably 2001 with my biopsy, I knew I had an inclusion by a muscular dystrophy inclusion body of myopathy they call it, but it probably wasn’t genetically defined until 2005 or 2007.

    As a as a child, I could see my dad getting weaker and weaker and not being able to do things. And the same with my grandfather and my grandfather, his family, you know, relatives had and they just way back then around the eighteen hundreds, you were just lazy. You know, he he had an accident. He claims he had an accident when he was plowing and a plow fell on him. And that’s what caused his weakness in his legs. So as a farming injury? Hmm. And then my dad sort of knew that something was up, but he never went to the doctor. And when he finally went to the doctor and found out he had a muscular dystrophy and it was incurable, you know, he it really upset him. I thought there was a pill he could take or surgery. And so my mom, you know, I guess, saw me getting a little weak or whatever, and actually, to her credit, really did all the legwork on getting all the relatives. You know, there’s a family reunion, I think, which kind of triggered all this. And she just put all these people together with Duke University and and the rest is kind of history. I knew. So I saw my dad, but you know, I was still running doing everything I wanted to do.

    But the thing about me is that I was I always came in last in red and foot races and I was picked last for kickball team. And you know, I mean, so but it never, never dawned on me that there was something wrong with me. I was just happy to be involved. And, you know, I had the usual desires and drives as a teenager and I wanted to play professional basketball. You know, that was never to be, of course, but I never put two and two together. I ran Cross Country in college. I was still, you know, I did fairly well. And you know, I was, you know, I was doing everything a person could do. It’s just that I wasn’t the fastest person in the world. But again, it wasn’t until I was like 30 or 30 that I started putting things together. You know, this was past my medical training, and I still thought I was normal. But maybe, maybe I don’t know why. I guess you would call it denial, but it was on a very subconscious level.

    And it was again, it was almost a selfish desire to go into medicine because, you know, I majored in a bachelor’s in science, chemistry biology and I said, you know, I thought, What am I going to do with all this? And I’m kind of a social guy. And so I thought medicine was a nice blend of that. I guess I should have taken over my dad’s business. He was an engineer at a metal working shop, but it just didn’t interest me at all. So I chose my own path, you might say. But then, you know, through medical school, I sort of had an awakening that, you know, there’s something to this. Maybe I could help this out. But you know, all the research was still primitive, and I got drawn into other areas internal medicine and then pulmonary, which I’m a practicing pulmonologist now. Thirty five years at the same hospital in Alameda.

    there is a new naming, a new naming system I think about five years ago where you know of the the types we know that, you know, I kind of like to split things into autosomal dominant world, right? I’m a recessive now. Myotonic, of course, is autosomal dominant. As I recall, two types. Yeah, so. So sticking with the autosomal dominant, they tend to be milder later onset and with exceptions, obviously, and some can involve heart and lungs more than others versus autosomal recessive, which are 80 percent of the muscular dystrophy, the limb girdle muscular dystrophy. We’re not talking about Duchenne. That’s kind of in a different category, better research and stuff like that. So the autosomal recessive that is the two bad genes, they tend to be younger onset involve cardiac and respiratory a lot more frequently. So, you know, I am thankful in a way that I had a later onset. Having said that, there are there are genetic engineering company Sarepta in particular that’s come out with whether they’re developing therapy for five autosomal recessive limb girdle muscular deficiencies to A, B, C, D and I think I or something like that. So you know, that can be easily googled by just Googling Sarepta, but so they’re about five years ahead of autosomal dominant as far as therapy.

    So that’s the way I look at the world, and that’s why I developed a foundation the LGM de 1B Foundation, which doubles as an autosomal dominant registry. And so anybody who has an autosomal dominant condition, even yourself, if you’re not part of a foundation and you know, I mean, it’s like the 20 percent we’re really like stepchildren, you know, so I felt compelled to organize the autosomal dominance because in our world, the therapy will be different. But but homogenous the same things that would help you would help me versus like CRISPR, antisense oligonucleotides knock knock down strategies that will block the bad protein. So that’s a couple of years away. But that’s why I thought I would organize people in my registry. So when people come knocking say, Look, do you have Mathebula myopathy at this time? Do you have myotonic dystrophy at this time? You know, if you’re not already involved in that sort of registry that might represent you, then I’ll take all comers, all stragglers, so to speak.

    Well, you know, all you know, University of Washington, St. Louis is the epicenter for SGMD 1d, the DNA JB six variant. So we kind of hooked our way. Into to them, and it just so happens that one of the main researchers has the same condition, so he’s highly motivated to find a cure. So anyway, there are other there are seven other centers who are in this consortium that are also looking into that as well. But they’re the main folks. But again, they were going to enroll two or three people a month and a natural history study, but that came to a screeching halt. So what do you do in the meantime? Lo and behold, with social media, with the relaxation of of of of licenses across the United States, medical licenses, what I did was and I found out that there was a lot of free genetic testing. You know, like Invité has a lot of sponsored testing, not only for muscular dystrophy, but seizures for I mean, if you go to Invité and look at their sponsored panels, it’s voluminous. You can get a lot of free testing.

    So I signed up with them and I I put the word out through social media that I would facilitate free testing. But you had to have a doctor who could review the test in the provides free genetic counseling. So everything was in place for me medical legally. I was just the conduit, but I was enjoying analyzing this and giving my two cents because like you, you’ve learned a lot about these conditions. And so I’m able because I had the condition, I have a medical license and I’ve gone to, you know, sort of grad school, you know, night school on muscular dystrophies and genetics. And I’ve watched a lot of YouTube channels, but I feel like I’m qualified enough to be at least a conduit. So as you know, I’ve got up to one hundred and thirty patients and about 30 percent I’ve made a diagnosis. It was not known. So I’ve helped, you know, a third of people. There’s other people that we have suspicious genes and we’re still kind of doing other things to try to sort their conditions out.

    All the genetic testing that I just told you through Invité and other other big powerhouses is sponsored. And again, you know, genetic therapy companies want, you know, they make big money if they can deliver therapy. So it’s it’s good for them. I guess everybody’s making money. I don’t question it. I just I just go for it as long.

    So that’s very gratifying. But, you know, the autosomal recessive, there are treatments for that and there. We’re going clinical trials now, and it’s very exciting, but again, autosomal recessive. Your audience has to understand that autosomal recessive is like having two bad cars in your garage. You can’t go anywhere. So all you have to do is slip in a car, a good car and you’re off to the races. Autosomal dominant is different because you autosomal dominant gene is producing a protein that’s toxic. Ok, so you know you can’t get rid of it. All you can do is go in with CRISPR and plug it out and put in a good gene. Or you can send in a little binding messenger RNA to block that bad art and messenger RNA called a knockdown strategy. So those are the two things that are working working right now for autosomal dominant and probably autosomal recessive, too. But all you have to do is slip in a good gene. And you know, the case I give is hemophilia. Ok, hemophilia is, you know, they bleed into their joints and bleed into their tissues, and they receive a million dollars worth of blood products a year. Wow. So, you know, and they don’t like, you know, they fall and they say, Oh my God, my joints are going to swell up and I’m going to be in pain for days.

  • Coping Just Fine: Working from Home, Streaming Media & Making Masks

    Coping Just Fine: Working from Home, Streaming Media & Making Masks

    Featured are four people — with their own unique health conditions — that are coping and making the best of the quarantine and pandemic.

    Luda Gogolushko, who has SMA Type 3 and lives in Southern California, continues to write and publish from the safety of her home.

    Lindsey Kizer, in North Carolina, gets to telecommute for her job and tries to maintain self-care routines to avoid narcoleptic flare ups.

    Jay Carr, with myotonic dystrophy in Virginia, spends more time with his teenage son during the lockdown. He also cheers others with his humorous Facebook posts and musical interludes.

    Peter Slobodnik, outside of Sacramento, keeps himself busy by making masks for friends and family while also planning an advocacy bike ride to draw attention to his rare disease, Hereditary Spastic Paraplegia.

    Each of these podcast guests has found their own way to cope with the pandemic.

  • Brush & Floss to Avoid Tooth Loss: Dental Health During a Pandemic

    Woman received dental treatment

    People with anxiety, autism, blindness or low vision, deaf and hard of hearing, mobility challenges, chemical sensitivities, or PTSD may face unique challenges visiting a dental office. Now with the additional barrier — the COVID-19 pandemic — many people are postponing or cancelling routine dental appointments.

    Dr. Helena Caballero, a dentist in Northern California, discusses oral health and hygiene, how COVID-19 has changed dentistry, and modifications for people with disabilities.

    For additional information, you can download Creating Disability Friendly Dental Practices from The Independence Center. For those with Parkinson’s Disease, additional information is provided to maintain dental health. For those with neurological disorders, there is an article, “Dental Visits Made Easier” offering helpful tips.

    Here is an article that discusses the little dental coverage that Medicare offers.

  • Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    Hear Ye, Hear Ye: People with Multiple Sclerosis, Spinal Cord Injury, Parkinson’s or Neuromuscular Disease

    If you, or someone you know, has a muscle or nerve condition such as Multiple Sclerosis, Spinal Cord Injury, Amputation, Osteoarthritis, Parkinson’s Disease, or a neuromuscular disease (i.e. myotonic dystrophy, SMA, Charcot Marie Tooth, Becker’s, ALS, etc.), here’s an opportunity to participate in a research study. No trips to a medical center or donation of muscle tissue required.

    The Department of Rehabilitation Medicine at the University of Washington Medical Center has a variety of studies with different criteria. For Factsheets produced by UW — after a study has concluded — check this website.

    Listen to an earlier podcast episode with a UW Department of Rehabilitation Medicine Research Study Coordinator about Resilience and Aging with a Disability.

    For additional information about research studies discussed in this episode:

    UW Community Health Study, Phone: 1-866-928-2114 Email: communityhealthstudy@uw.edu

    UW CALMS Study, Phone: 1-866-928-2114 Email: calms@uw.edu

  • Mindfulness as a Disease Management Strategy

    Mindfulness as a Disease Management Strategy

    Being diagnosed with a chronic, debilitating disease can certainly bring stress to one’s life. In fact, that stress can be significant enough to be called trauma.

    How one handles this stress varies. Some people have amazing coping capacity and are hard-wired for resilience while others have more difficulty. None of it is easy.

    Mary Holt, a Registered Nurse with a Master’s Degree in Counseling Psychology, shares her journey of loss and recovery and the profound impact a mindfulness meditation practice has had on her life and work. She brings this practice to the clinics where she helps patients and their families with neuromuscular and Parkinson’s disease.

    Mentioned in this podcast episode is the annual International Rare Disease Day organized by NORD. Here are two relevant podcast episodes: Rare Disease and the Need for Research and It’s Not that Easy Being Rare.

    Transcript

    welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready

    hello listeners we’re nearing the end of february which means it’s almost international rare disease day i have a rare disease do you there are over 6 000 rare diseases i know i’ve met people with a disease so rare that they’ve never met anyone else with it i can’t even imagine what that would be like recently at my monthly support group we had a family joined us who had never met people outside of their family with myotonic dystrophy if you’re diagnosed and you live in or near a heavily populated city you will hopefully not have to wait too long before you meet others with the disease we have a patient advocacy organization that has an annual conference and this conference has given me the opportunity to meet others with the condition who live throughout the us and other parts of the world we’ve had people in the conference come from new zealand south america and of course you know a few european countries so rare disease day celebrated on february 28th is a day of advocacy getting out in the public to let others know about your disease last year a group of us met at senator dianne feinstein’s office in san francisco this year we’re joining others with rare diseases at a local museum and park so check the gospel website for links to learn more about rare disease day maybe there is an event happening in your neck in the wood and i will also include a couple links to podcasts that i did specifically about rare disease day today though is not about rare disease as i mentioned i’m part of a patient advocacy organization which meets in person annually usually in a different location throughout the country and last year we met in philadelphia and one of the sessions i attended was titled mindfulness as a disease management strategy now you can just imagine how that piqued my interest unfortunately the session was less than 45 minutes but i could tell the presenter had more to offer so i introduced myself gave her my podcast calling card it’s actually a postcard um if you want one let me know anyhow she and i recently had a chance to talk mary hope is a busy woman she works at two different philadelphia clinics and has a private practice in addition to her academic work she’s a registered nurse and has a master’s degree in counseling she has a lot of lived experience mary was a caregiver for her husband and experienced his loss at an early age with two young children to raise she’s also been in recovery from alcoholism for a number of years i have always worked in my nursing career uh with chronic pain and chronic illness that kind had always been my path and then there were actually a series of events that had happened personally in my life and i had not been working for a time while i was pregnant with my second child and yeah it was just knew i had to get back into the workforce my husband had become quite ill and i you know of course he was not able to work so i really had to kind of get back into the workforce um you know kind of help provide for us in a sense in my two children so i saw this job posting that was for a nurse coordinator i loved always being able to kind of have that integrative model so i love the coordination piece and it was neurology so it was it was the mda als center of hope um and at that time it was at diversity in philadelphia and that was back 2005 and then i started there as a nurse coordinator full time and i was probably seven years or so and had had a master’s encounter with a specialization in psychological trauma and bereavement so working with people that had you know a focus of course of chronic illness terminal illness that was really one of my passions so when the mental health specialist left that center then i kind of moved into that role in terms of being able to support the patients and the families yeah all throughout the journey really from time of diagnosis or from the time that we you know began with them and then journeying for as long as they stayed with us you know for a number of years the rest of my time my other full-time work i actually do three things so my other full-time work is working with parkinson’s and i’m a nurse educator a clinical educator with that population so i work with people that have parkinson’s and their families and i work with physicians movement disorder specialists and i do educate food i teach the families and the patients how to use a particular medicine medication and injectable medicine for parkinson’s and really how to live well you know as best as they can with their parkinson’s and then outside of that i am also i have a private practice in terms of life coaching speaking mindfulness practice and things like that so i’ve always had a desire to have uh and my you know goal still one of my goals is to be able to do that more to be able to reach people in a way that to have a greater impact in terms of helping people so i when i was working originally with a neurology team and during that time i had had a meditation practice of my own i’ve been sober for a bit over 12 25 years and i’ve had a meditation practice of my own for a number of years and when i was at jefferson i was working with chronic pain patients and they had a center for uh integrative medicine so i went there and i took a mindfulness course a mindfulness meditation it was actually a stress management course and at that time i fully impacted and shifted my whole experience in my own life my professional work my recovery my own personal health in such dramatic ways that i went on for more training and really have been teaching and doing that practice and really focusing a ton of my work professionally around stress stress management and how it relates to our health and also how mindfulness can be a foundational piece of that in terms of helping people live well in the midst of chronic illness and terminal illness so what is psychological trauma when it’s boiled down it is trauma if we look at just trauma in and of itself is something whether it be an experience a situation or an event that overwhelms the system right overwhelm the system physically of course it could overwhelm the system of course which is my my specialization psychologically and mentally emotionally spiritually as well so that can come from a certain particular event it can also come from chronic exposure to certain things whether they be you know external or potentially internal you know somebody is chronically experiencing anything you know negative perceived as negative to the point where it over overwhelms our ability to kind of integrate our experiences on a healthy level for us to be able to function kind of day in and day out in a healthy way yeah because when i hear the term trauma i think of people with ptsd or um some sort of sexual abuse i generally might and i’m not you know a professional in psychological or mental health but i um i think of it as like an incident or series of incidents that are traumatizing but the way you’ve defined it it sounds as if just the diagnosis of a progressive chronic illness can serve as trauma

    absolutely yes absolutely i’ve experienced that with people you know when we say in particular when we you know potentially give somebody the diagnosis of als or something um what can happen is that i mean on the flip side of this too i you know i don’t know if we’ll talk about it but is also the amazing resiliency of the human spirit in terms of being able to you know kind of integrate and wrap our brains around certain things and being able to function in the midst of these kind of crises these crises that happen in our lives but you know when somebody is you know faced with a situation that is in many ways i’m going to say potentially but can many ways alter their existence and how they perceive that it can absolutely be traumatic i was actually just this weekend i was working with our team our multidisciplinary team and in terms of the and talking about the effects of you know continually working with the population of you know in neuromuscular conditions and neurodegenerative conditions that you know it is a traumatic environment because we’re continually working with emotions that may arise from time to time such as frustration powerlessness not being able to make an effect potentially loss grief sadness you know and that can be incredibly distressing to the you know our mental capacity and our psychological capacity to be able to manage so how do you define resilience so i would define resilience as the amazing capacity which always seems to surprise me the amazing the amazing capacity of the human being and the human spirit to be able to integrate and rise above

    what may be perceived as incredibly negative circumstances and find meaning continue to move forward um serve continue to serve in some way not that all of these are necessary but these are the things that i see in the people that i work with and the families that i really tiny amount like couldn’t even fathom what it’s like yet you are serving the world rising above taking your experience and helping others that is to me incredibly resilient because some people fold i also see a lot of people fold and i don’t believe that there’s a good a right or wrong necessarily we all do with the capacity that we have um but when you ask about resiliency it’s definitely i think you’re a living example of that so the session you read at the conference this year how i met you was titled mindfulness as a disease management strategy so i think we’ve led up to this right you talked about how mindfulness helped you and you your training and i’m assuming you’ve implemented it in all the work you do does a mindfulness training or does it as a strategy help build resilience for me personally you know mindfulness is kind of a buzzword around healthcare around the corporate world somewhat um and it really is a way of it really is a way of relating to the world you know i mean when i so i practice minds when yes there are strategies within mindfulness and from the bigger scheme it really is a way of relating to our life and our life experiences and ourselves and others um so it definitely can build resiliency because what mindfulness gives us is number one it gives us awareness so i’m not a and the other thing i want to say is it’s a practice so it’s something that is certainly cultivated over time i am absolutely not an expert it is something i practice every day um every moment of my life that i can become more aware so it gives us an awareness so we’re not just acting on autopilot so we have some sense of you know when we’re going down the rabbit hole per se so it gives us awareness and then it has this underpinning in terms of non-judgment and compassion so it offers me the opportunity to meet my life and my life experiences to number one become aware of my you know how i’m perceiving something and how i’m relating to it and then it gives me ways of coping with openness and non-judgment and compassion for self for others and for kind of life as a whole which is simple in words yet incredibly in light so yes it can 100 yeah build resiliency how do you do that in the clinic setting i mean i i’ve been to the interdisciplinary clinics in san francisco and at stanford you know for my disease and i imagine they’re kind of similar and you know i went for years i haven’t gone recently but i had a pt who i saw you know uh every year for many years and one of the last times i saw her and unfortunately she had to leave the clinic she moved away but she started talking about mindfulness meditation and i was blown away because it was such a departure from anything she spoke about before so i’m wondering you know is it something that the other clinicians are talking about too or is it just you that’s actually yeah that’s a great question so it is um it just depends on everybody’s level of comfortability uh in our life right now it’s not something that everybody talks about people they are becoming more aware of it and more i would say open to it you know whether that is because of you know kind of what i do you know i talk about there so i would love to see it one day as kind of a standard of care um interesting and really offering people ways to manage you know all of i mean you think i’m just thinking about the physical therapist so if your physical therapist is there talking about mindfulness meditation that shows huge kind of integration to me that says you know there’s a lot of integration there in terms of what can help support you that she’s not just just addressing you linearly right with a solo focus you know acknowledging the fact that you are simply as a being right you have a mind you have a body and you have a heart so how then can we because they don’t none of them operate individually so how is it then that we can take our health care management and also approach people you know i really meet people in the sense that you know that we each really do have the capacity within ourselves to kind of answer all the questions that we have and we do have the resources within us um whether we need to find some more outside but we really do have a that within us so i meet people hopefully with that uh intention that you really do have everything that you need um and my role with you is then just to help you uncover that and get clear what’s your relationship with yourself you know that’s a big thing so when i’m seeing people in clinic a lot of our conversation is around um what’s the you know what is the relationship with the illness you know a lot of people are you know fine you know quite they they’re angry they’re and those emotions sometimes are controlling them in ways that they are not even aware of and impacting choices that they make choices that they don’t make whether they’re going to use their walker or not use their walker whether they’re going to accept a feeding tube or not accept the feeding tube so how to how how help them explore the reasons underneath that why is it that you don’t want to use the walker when you’ve fallen three times right no not in a fault-finding way but just to help them explore that oh you know it means that um you know that much worse in my illness or i’m giving into it or you know what will people think of me i’m weak you know all sorts of things so um yeah so i really try to help them you know to provide a space for that to arise because the body does hold you know there’s a book called the body holds the score or keeps the score and it really i mean you know our bodies just like it needs to you know all these negative emotions they all kind of you know they can i mean whether we’re giving a space for them or not they need to come out some way right so especially people that have physical conditions you know like you all the people that i work with i i stress that it’s even more so important and myself you know i it is more so important if we already have a physical condition or a medical condition that we you know somehow manage the stressors and you know negative emotions in our lives when they arise because our body is already kind of working somewhat double time um you know to manage and you know negative emotions build up or not given space can just impact that in a profound way there’s a lot of research around that as well in terms of the cascade of events with the you know neural chemicals that kind of run through our body so i hope to just meet people you know i hope to just provide a space where people feel that they can uh you know be real and really explore what they need to so then they can make the best decisions that they can you know for themselves whether it’s using the walker or not using the walker having the feeding tube or not having the feeding tube so a lot of my work in the clinic is around life choices all the choices we have to make yeah i invite you to check out mary’s website especially if you live anywhere near philadelphia she teaches a variety of classes i wish i could take thanks for listening i hope you’re able to take away something you heard in today’s podcast and apply it to your life take care of yourself and i i hope to see you online in our facebook group on youtube instagram or on the glass f4 website thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online

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  • Patient Advocates, Patient Leaders

    • Andrea Klein
      Andrea L. Klein
    • Melissa Talwar & Leslie Krongold
      Melissa Talwar

    What is a Patient Advocate? A patient advocate can be an actual patient with a mental and/or physical health condition, a caregiver for someone with a health condition, or a paid professional advocating on behalf of others with a health condition.

    Andrea L. Klein, of Cleveland, Tennessee, has collagen six intermediate congenital muscular dystrophy. She started a Facebook group, Breathe with MD Support Group, for people with a neuromuscular disease who struggle with respiratory health. Recently, she established a nonprofit organization with the same name.

    Melissa Talwar, of Pasadena, California, has struggled with fibromyalgia since she was 14 years old. Her experiences with different medications and their alarming side effects catapulted her into focused research on the condition and potential treatments. After volunteering with a patient advocacy organization and then traveling around the U.S. to meet others with fibromyalgia, Melissa also established a nonprofit organization.

  • Fashion: Being Yourself, Expressing Yourself & Your Creativity

    Four women with different physical abilities talk about what fashion means to them and how they deal with fashion challenges.

    Cheryl and Lainie both have Charcot Marie Tooth (CMT) and wear AFO leg braces. Lainie explores fashion hacks and DIY solutions in her blog, Trend-Able.

    Keisha has Limb Girdle Muscular Dystrophy, studied fashion, and launched her company, Girls Chronically Rock.

    Kirsten Passmore has Cerebral Palsy and has been enjoying CosPlay for the past five years. Learn more about her organization, CosAbility, and see which conventions they’ll attend by liking their Facebook page.

    • Lainie
      Lainie of Trend-Able
    • Kirsten
      Kirsten of CosAbility
    • Cheryl
      Cheryl
    • Keisha of Girls Chronically Rock
  • When friends or family can’t handle your chronic illness…

    When friends or family can’t handle your chronic illness…

    If you have a physical or mental health condition that has altered the way you look or behave, it may scare people. Have you had friends or family members change how they interact with you or perhaps distance themselves?

    A recent incident with an old friend got me thinking about this topic. In the Glass Half Full Facebook group some have shared their stories. I invite you to share your experiences either in Facebook or in the podcast notes on the Glass Half Full website.

  • What is a Voice: Communication Challenges

    What is a Voice: Communication Challenges

    Vocal problems can occur for people with all types of conditions — Parkinson’s disease, muscular dystrophy, stroke. Acute laryngitis is very common while chronic laryngitis affects over 20% of the population.

    Christine received a diagnosis of spasmodic dysphonia and now experiences some relief with botox shots. Hanna, who has SMA type 1, uses assistive technology to help her communicate. Check out her website to watch a video demonstrating how she uses the technology.

    Transcript

    welcome to glass half full with leslie krongold she shares her stories experiences and knowledge of living and coping with a chronic health condition learn about tools and resources and hear inspirational interviews that help you to live a life filled with quality and dignity with two decades of support group leadership leslie’s ready to help you make lemonade out of life’s lemons are you ready are you ready

    hello and welcome to the podcast i’ve been toying with this topic of vocal problems for a while but after being sick for three weeks and not being able to communicate verbally for much of that time i realized it was time to tackle the topic

    i have a couple of guests i’ve interviewed no experts no speech therapists just people who have shall we say challenges using their voice to communicate a lot of people experience this at some point in their lives for example laryngitis there was acute and chronic laryngitis the only factor that i could find was for chronic laryngitis which stated that 21 of the population may develop chronic laryngitis that’s really surprising so i’ll assume that a much larger percentage of people will experience acute laryngitis i certainly have laryngitis is an inflammation of your larynx or voice box it happens from overuse irritation or infection your vocal cords are within your voice box and are vital to your breathing swallowing and talking

    all i know is that when i have some type of respiratory condition i have difficulty speaking because i cough and choke and if i’m able to squeak out a few words they’re really hard to hear and understand i also suppose men difficulty is more related to having a muscle disease which affects my breathing swallowing and talking and by the way chiquita is making noise in the background um she doesn’t like when i talk about problems of any kind so just ignore her she’ll stop after a while thankfully i’ve recovered but i know my voice is weakened and i notice this if i listen to my earlier podcast episodes from three years ago

    in the past three weeks i curtailed much of my interaction with humans except for my spouse i found some relief using a couple of technology tools one is using the text to speech feature in microsoft word when i had something substantive to communicate i sat at my computer composed the lengthy message and had jessica sit down and listen to one of four assistants communicate for me you’ve been listening to samantha

    but perhaps you’d rather listen to victoria victoria speaks a little slower though there is a pacing feature available for each of the voices to mix things up no one says i can’t have alex speak for me or fred fred likes to speak for me too but sometimes i just want to shut him up shut up read okay

    sitting in my computer can get to be a drag so there is a text-to-speech feature in notes on my iphone this can come in handy but be careful about spell check because it could make communication efforts even more difficult

    so that’s how i got around for three weeks how do others do it vocal problems exist for others with neuromuscular disease parkinson’s disease stroke and a number of other conditions you’ve likely never heard of my friend christine who is a retired nurse and writer shares her story of getting an accurate diagnosis for her vocal problems

    when did you notice something was unusual with your voice was it a a dramatic change did it happen gradually or did someone bring it to your attention i think maybe eight to ten years ago i noticed that my voice was different and it was very gradual no one else brought it to my attention but when i described it to my primary care physician she immediately said she knew what i was talking about so it was clear to her that something was going on and was she the one who diagnosed you no she referred me to an ear nose and throat doctor i think now they call them head and neck surgeons but that was the first step of a pretty long process trying to get diagnosed oh really so what did they first what did the ear nose and throat doctor think well the first one thought that it was probably either acid reflux or allergies and he prescribed a neti pot as you know sinus rinse device and medications for acid excess acid and that didn’t really make a big difference at all so um i you know my primary care physician moved on and i had a different one and she sent me to another ent doctor who sent me to a speech therapist he said i had some later i found out that he called it dysphonia but he didn’t tell me that he just said i’m going to send you to a speech therapist who can help you correct your speaking and so she saw me for about 10 or 12 sessions and she never mentioned spasmodic dysphonia and i didn’t see a lot of improvement i i hung in there because i thought maybe it was helping but it didn’t seem too really

    well she just had me breathe breathe more effectively from my abdomen and make sure that i was really projecting my voice and leaning forward and she had me do different sound exercises that she said might help and i didn’t notice any change really and then one day i was talking to a friend and and she is in ohio and she told me that this npr radio personality diane reem sounded a lot like me and that she had this condition so i mean you know she couldn’t remember the name of it but that she had talked a lot about having some voice condition so i went into sleuthing mode and i eventually found diane riemann that she had spasmodic dysphonia and there is a national association that that deals with spasmodic dysphonia at dysphonia.org and i went there and i listened to some they have sample voices there on the website and i was just so stunned because it was like listening to myself so i um i sought out i on the website they because this condition only affects um they estimate about 50 000 people in this country so a lot of doctors haven’t really run into it in their practices so on their website they list doctors who have some knowledge of the condition so that’s how i got finally an official diagnosis and i started the treatments with botox which help with the the spasms that occur with this condition it’s a neurological thing that causes spasms in the muscles of the larynx that cause the voice to sound quite strained and the botox actually relaxes and paralyzes those muscles and doesn’t really for me work too well but it’s a small improvement and the the downside with botox is that you have a period where your voice is very soft and kind of breathy and i just had a treatment about two weeks ago so i’m in that phase right now how long does it last when do you how frequently do you get the shots

    well this condition is not predictable everyone seems to have a different reaction they don’t have a specific dosage that they recommend for everyone so they start you out usually with a very small dose and then depending on how that works they increase it and people have quite different reactions some people go can only it only lasts for a month or two other people it lasts six months for me it seems like it’s two to three months that it lasts and it’s for me not a perfect treatment my current doctor who has a lot of experience with this told me that i have both spasmodic dysphonia and a vocal tremor and the botox only helps the spasmodic dysphonia which causes breaks in the voice but it so the botox helps the breaks but it doesn’t help the tremor so it’s only partially effective for me what if anything helps the tremor

    nothing that i’ve found and so you went to a support group can you tell me about that you know what you know was it helpful the experience do you continue to go um yes i go whenever i can i think it’s because this condition is not very well known people who are diagnosed are really eager to talk to others who have it and find out how they’ve coped with it and what has helped and what hasn’t and which doctors have been helpful and which have not so i found it to be really good um we share our experience with whatever treatment protocol you know the frequency and the amount of botox and we talk about tools that we can use to minimize the impact of of the condition so yeah i i can’t think of anything negative about going it’s been really helpful for me when are some of the tools that you mentioned well for example the let me think the center for independent living in berkeley and alameda they have you can get a special telephone that helps you be heard better i haven’t tried it yet so i can’t speak to exactly what it does but they’ve been working on the technology for not just this condition but for many conditions related to voice and being able to be heard on the phone and so that was we had a speaker come who talked about that oh sometimes we do relaxation sessions and we’ve had speech therapists come who recommend certain practices when you’re trying to project your voice more effectively so that kind of thing that’s great does anybody know why it happens all of a sudden because i mean you spent right most of your life without it until wouldn’t you say about eight years ago yeah yeah um they don’t know what causes it some people actually get it as teenagers others it’s more commonly it more commonly develops in middle age and and older middle age and older they don’t really know there is a fair amount of research and the national association i mentioned is trying to fund some of that research i participated in a program through ucsf where they’re trying to look at what the causes are and you know determine how to address the problem more effectively you come from a large family none of your siblings have have this condition no no okay i i don’t know anyone else um in my family and you had told me some famous people who were the famous people you mentioned

    well diane reim is one of them scott adams the cartoonist is one

    susan collins the senator from maine if you listen to her you can hear the breaks and the hesitation in her voice john f kennedy jr the let’s see i guess he’s the son of robert kennedy he has it yeah that’s pretty good for having such a rare condition to have all these famous people i i you know my disease there’s no one famous so oh no really oh that’s funny i’m sure there are famous people they just i don’t know maybe because they’re not using their voices they can hide out more effectively

    recently i read a blog post by a neurologist who had to leave for medical practice due to her advanced parkinson’s disease one of her symptoms hypophonia affects her voice making it soft and difficult to hear she’s been able to resolve this with an increase in medication of the vodopa and speech therapy

    earlier this year i was at a seminar given by our local muscular dystrophy association office in san francisco i had the opportunity to meet a young woman with sma spinal muscle atrophy named hannah eid hannah was one of the presenters and discussed how she opened an able account an able account is a tax advantage savings account for individuals with disabilities and their families and these were created as a result of the passage of the stephen beck jr achieving a better life experience act of 2014 and abel able is the acronym i wasn’t so interested in the able account but what made hannah’s presentation so memorable is that she used computer technology to deliver it here’s a brief interview with hannah

    at what age were you unable to use your voice

    i have had a trick in ventilator since i was six months old so i’ve never been able to speak locally ever i’ve been using some sort of communication device ever since i was three years old and how old are you now

    i’m 22. and so can you tell me about the technology that you use now to help you communicate

    i use a communication device called adobe i use a switch with my right hand and it scans around the screen and i select the button i want

    you select the button with your finger

    yes and is this the same technology you used when you were a child or has it changed

    i’ve been using a tobii device since january of 2018 and i absolutely love it it’s also a computer and that’s really cool because i don’t have to use laptop anymore before i use a device called dynavox and i could use any pc computer with a remote control code and access it and it was great for having a communication device and a computer in one is so convenient i also don’t feel limited vocabulary wise because the toby has great word prediction whereas with the dynavox i had preprogrammed words and the spelling prediction wasn’t great i do have set up pre-programmed phrases on my topi so i can talk quickly otherwise i type it out which takes more time but it’s worth it as you can see i like to talk well that so that’s wonderful that the technology has improved and it’s just helped you create uh you know be able to communicate more clearly and naturally

    absolutely

    so i didn’t have any more questions would you like to add anything

    i do freelance web development so if you know anyone who needs the website i’m your gal okay so maybe you can send me a link to your website through facebook and i can include that of course

    thank you so much for having me leslie you’re welcome i appreciate it hannah and i will see you on facebook

    have a nice day thank you you too bye bye

    although we each have different conditions we share a similar symptom albeit to varying degrees the big takeaway for me is that we can learn from each other we can learn about coping mechanisms assistive technologies and other resources tools or hacks thank you to christine hannah and that doctor with parkinson’s for sharing your stories

    thank you for listening to glass half full leslie invites you to leave a rating and review on itunes this helps spread the word to others dealing with chronic health issues for show notes updates and more visit the website glass half full dot online glass half full dot online

  • Gratitude & Thinking Small

    ‘Tis the season to be thankful, grateful, and appreciative. But how does one get to a place of gratitude if you’re feeling miserable — physically, emotionally, or both? Toni Bernhard, author of How to Be Sick (Second Edition): A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, talks about gratitude as it relates to the Four Sublimes States of Buddhism. 

    A brief introduction to Robert A. Emmons‘, Ph.D. research on gratitude is presented on the physical, psychological, and social benefits to a gratitude practice. Emmons has written a number of books but here is a quick read for those anxious to jump into a gratitude practice, The Little Book of Gratitude: Create a life of happiness and wellbeing by giving thanks.

    Join Leslie with her 30-day gratitude challenge of daily journaling in the Glass Half Full Facebook group.

    Listen to Toni Bernhard in her earlier podcast episode and her articles on Psychology Today’s website.