Glass Half Full with Leslie Krongold, Ed.D.

Category: Advocacy

  • We need innovative solutions when it comes to the rare (disease) community

    We need innovative solutions when it comes to the rare (disease) community

    February 28th is Rare Disease Day. Twenty-five to 30 million Americans live with a rare disease. For more facts and figures related to rare diseases, check the NORD website.

    This podcast episode catches up with Aditi Kantipuly, a physician and advocate, immersed in the rare disease community. As a young girl Aditi learned about a child born with osteogenesis imperfecta – a rare bone condition – and has been captivated ever since. Her journey includes a masters program in public health, a Fulbright scholarship to small villages throughout India, and medical school. Currently she’s exploring the roles of health equity and social immunity.

    For earlier podcast episodes related to rare disease, It’s not that easy being rare, Rare disease and the need for research, and Rare and invisible disability + spoon theory.

    Check this webpage for a list of other podcast programs related to rare disease.

  • Chatting: A Professional Patient & Coping with the holidays

    Over the past month there’s been some chatting — with a Professional Patient and a few virtual friends sharing how they cope with the holidays.

    I noticed a Facebook posting from a high school classmate identifying himself as a professional patient so naturally I was intrigued. In this video I ask David Weiss all about his 11 years of experience as a professional patient which includes giving feedback to first- and second-year medical school students, participating in tests doctors must take before the Florida state boards, and teaching doctors how to give a male examination using his own penis and prostate.

    If you missed the December podcast, you’re welcome to listen or watch it on YouTube; the participants did dress quite festively. Joining me are Andrea Klein with collagen 6 congenital muscular dystrophy, Janice Laurence with Charcot Marie Tooth neuromuscular disease, and Roma Leffmann who advocates for people with acquired disabilities as a stroke survivor. Together we discuss everything from dysphagia, incontinence , single life, ableism, and gifting.

  • International Myotonic Dystrophy Awareness Day

    International Myotonic Dystrophy Awareness Day

    September 15th is International Myotonic Dystrophy Awareness Day. To learn more about helping educate and advocate for Myotonic Dystrophy visit the Muscular Dystrophy Association or Myotonic Dystrophy Foundation.

    The purpose of International Myotonic Dystrophy Awareness Day is to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease.

    To learn about the different types of myotonic dystrophy, visit this NORD webpage.

    In addition to this podcast host/producer who lives with Myotonic Dystrophy Type 1, the following podcast episodes have featured guests living with DM1, DM2, or caregivers in a DM family:

    Food = Medicine

    Passion and Motivation to Move through the Hard Stuff

    Working with Wounded Warriors

    Music Gives Me a Peace Bubble

    Salute to Caregivers

    Stories of Healing with Essential Oils

    Transcript:

    Welcome to my first ever complete podcast episode about my rare disease myotonic dystrophy. Or as we like to call it DM because that’s how it’s referred to in medical literature.

    Now it’s not like it’s been a secret that I have this disease. I just haven’t spoken in detail about it unless it was relevant to the guest or topic of the podcast episode.

    But I just went to San Diego to attend the first in-person patient conference we’ve had since the pandemic. For two years we held a virtual conference. And there I was reminded that September 15th is now considered International Myotonic Dystrophy Awareness Day.

    I was also inspired to do an episode because the logo design for this day was created by a young Canadian woman whom I have now met in person – including her mother. check out the design by visiting the Glass Half Full website.

    The purpose of this International Myotonic Dystrophy Awareness Day:

    is to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease.

    Along with Alexandra’s logo design, I’ve included links to two organizations that have additional information about the Global Alliance and how you can advocate for those with myotonic dystrophy.

    Another reason I think I’ve felt inspired to draw attention to my rare condition is that it’s not so rare…anymore. At last week’s Patient Conference, I had the unusual and bittersweet opportunity to meet a young couple who are newly diagnosed because their infant – born 7 weeks ago – has congenital myotonic dystrophy. I was drawn to this woman who looked familiar and maybe familiar just means that her facial features resembled so many of us with DM Type 1 – thin face, sunken temples, pronounced cheek bones. We often look like we can be family. But I discovered it was her first time there due to her new diagnosis. Their baby was still in the NICU at a Bay Area Children’s Hospital. I acknowledged their sense of overwhelmedness and assured them they would meet many similar families to help them find their way through all of this.

                A couple of hours later my partner texted me – from another conference session – that there were people there from Fort Bragg. Last year we moved to rural California. None of the medical professionals I’ve met here have known someone with myotonic dystrophy. I went to meet them – and sure enough – it was the young couple I’d met earlier. Now there will be three of us with myotonic dystrophy within 10-minutes of each other.

                This family will have a lot of difficult issues to work through. Healthcare in this rural community is not like living in a metropolis. I have to drive 2-4 hours to see a pulmonologist, neurologist, or endocrinologist. The families I know of that have had congenital kids thrive the best have been able to provide all types of therapeutic modalities. Congenital kids often need major respiratory and GI help for the first few years. Developmentally many are on the autism spectrum and require special education and assistance.

                As an adult with DM, I made the decision to opt for the more natural environment in lieu of the most modern medical technology but I doubt one would do that for their child.

                So, I’ve talked a little about babies born with congenital DM. In the 20-something years since my diagnosis and involvement with two patient advocacy organizations I have heard, and known, many congenital kids who have died. If you know my story, I’m most certain that the sister I had for three days – in 1963 – also had the congenital form of the disease. Hardly anything was known about DM then and medical technology did not exist to help her live. But one thing I was able to do at the conference was introduce this couple to Richard whose son is…I believe 32 years old now…and has the congenital form. Hope is important in our lives.

                In addition to adult-onset DM type 1 there is a middle-range category often referred to as juvenile onset DM type 1. These are children that are diagnosed sometime in their childhood, but they may have had some unusual issues at birth, like club feet. It seems to me that often their issues don’t lead to a diagnosis until something dramatic in their families occurs such as a congenital birth or sudden heart attack of a relative.

                I’ve met so many families that thought their teen or young adult was just lazy and lacked motivation. There’s a whole track at these patient conferences for JOAs – juvenile onset adults. Many of these adults weren’t very successful in school and couldn’t hold down a job.

                And often you can have all three in one family. The diagnosis occurs with the birth of a congenital baby. The mother has had what the family thought were personality issues. The grandparents end up caring for the congenital child. In their house are at least three people with myotonic dystrophy.

                And then there is DM type 2. A good description of the symptoms for both DM types can be found on the NORD website: https://rarediseases.org/rare-diseases/dystrophy-myotonic/ but from what I currently know is that there are many similar symptoms but in general DM2 is less severe. There is no congenital form of DM2 nor does there seem to be a juvenile form. The people I know with DM2 don’t have the look that I mentioned earlier. Although last week I did notice a few of my DM2 friends have lost weight, i.e. muscle loss and are moving slower, like myself.

                In the late 1990s a researcher known as Dr. Tee Ashizawa co-founded the International Myotonic Dystrophy Consortium (IDMC) to bring together scientists and clinicians focusing on DM. Every two years the meeting location changed and eventually began attracting patient families as well. I had the opportunity to attend two of those meetings – one in Wurzberg, Germany and the other in San Sebastian Spain.

                Seeing people with myotonic dystrophy from other countries is pretty amazing; unfortunately, few spoke English and that’s the only language I’m fluent in. but in an online chat right before the IDMC met in Spain I became friendly with a man in Switzerland with DM1. Erich and I wrote emails back and forth and became close friends. I even convinced him to join Facebook. We met twice in person twice before he died; the first time in Barcelona and then in Iceland.

                Erich was able to attend support group meetings in France, Germany, and Switzerland so I got to hear about patient’s stories from outside the U.S.  At the IDMC I saw people who looked like me – thin with the similar facial features. I appreciated hearing presentations from different researchers – Japanese, Germans, Italians, Dutch. Some would include photos of their patients. Maybe other diseases have these global connections too? I hope so.

                Myotonic dystrophy is known to be the most common adult-onset muscular dystrophy. Previously thought to affect 1 out of every 8,000 in the general popular, recent prevalence studies suggest that it is more common with 1 out of every 2,100 people. Since the condition is multi-systemic and the symptoms can be written off as something else – i.e. lack of motivation, Irritable bowel syndrome, weakness, or even MS….it is often un-diagnosed.

                My partner and I often spot someone – a stranger – who resembles me and we wonder, “does that person have DM and not know it?”  Drawing awareness and educating healthcare professionals is important.

                At this year’s patient conference there were more pharmaceutical and biotech companies present than ever before. I listened to a few of their presentations but most of the science is lost on me; there’s a lot in the pipeline, as they say. My big takeaway was we had more and better food at the conference than ever. Thank you Pharma!

                I don’t believe so much in cures but I have a lot of hope for treatments. I have no regrets in life. having this condition has taught me things I likely never would have learned without it. my challenges have been many but I have found many ways to work around and mitigate the physical and emotional pain.

                I do hope treatments are in the near future that can provide young families with more hope that their child can live a healthier and happier life. I know how devasted my mother was from the loss of an infant and she never lived to understand why.

    Consider what you might be able to do for International Myotonic Dystrophy Awareness Day on September 15, 2023.

  • Neuropathy: Patient Turned Advocate

    Neuropathy: Patient Turned Advocate

    Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing the often, invisible pain of a neuropathy.

    Other organizations focused on research and support for those with a neuropathy include the Foundation for Peripheral Neuropathy and the Neuropathy Action Foundation.

    For those of you that came here looking for a photo mentioned in the podcast, it will turn up. Check back in a week. Thanks!

    Excerpt

    I’m actually one of those people. I’m fortunate in that I can actually distinguish, in my case the symptoms, and I’ll talk about why among different types of neuropathy. But I have problems where I have cervical spine impingement on my spinal cord, but I also have peripheral neuropathy. The impingement from the cord, though, tends to create symptoms that are much more localized because it said certain levels of the spine, in my case from C5 to C 7. In terms of that nomenclature, those symptoms are basically neck backs of shoulders and down the arms, whereas the more systemic peripheral things are body wide and the symptoms also are somewhat different. I mean, I get more typical compressive symptoms out of the cervical spine stuff as opposed to the other small fiber neuropathy. I have and define those terms for people, which is much more of a burning pain.

  • Rare and Invisible Disability + Spoon Theory

    Rare and Invisible Disability + Spoon Theory

    Traditionally the month of October is the time to become aware of people with disabilities — either a visible or invisible disability — but here we’re drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it’s a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let’s practice an awareness on a daily basis.

    Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, Insomnia Doodles.

    Earlier podcast episodes have explored Disability Awareness — The D Word and The Pirate as a Disability Action Figure. To learn more about Rare Disease, listen to this podcast episode, It’s Not That Easy Being Rare.

    Sunny is an avid gamer and Virtual Reality enthusiast; stay tuned for a future episode where she shares her love of VR.

  • Skin Cancer or Adult Acne?

    Skin Cancer or Adult Acne?

    What is that growing on me — could it be skin cancer? Have you asked yourself this question? During the pandemic I ignored a couple of what I thought were pimples because I was terrified to go inside a building. According to Wikipedia…

    Squamous cell carcinoma of the skin is usually not life-threatening, though it can be aggressive. Although the nonmelanoma skin cancer basal cell carcinoma (BCC) is rarely life-threatening, it can be troublesome, especially because 80 percent of BCCs develop on highly visible areas of the head and neck.

    Mayo Clinic

    Apparently I have, or had, both. After a few biopsies, a topical chemotherapy treatment, and now Mohs surgery, I hope this closes a chapter. Yet it seems nearly inevitable that there will be a recurrence. And thus my education on this topic is in its genesis.

    A few takeaways from this experience — don’t leave the house without sunscreen protection and learn more to successfully advocate for myself.

    Here’s an entry from a chronic illness blogger about her ordeal with skin cancer.

  • Two Facts & A Feeling: Telling a Patient Story

    Two Facts & A Feeling: Telling a Patient Story

    Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry – author, speaker, coach – at the Kaiser Permanente in Oregon, is one of those people.

    Emily was a natural story teller having spent part of her youth helping others tell their stories through song. Over the years she’s perfected the craft and simplified the process. It’s not rocket science, she says, just remember two facts and a feeling.

    As part of Kaiser’s Person & Family Centered Care, high impact storytelling is important for patients as well as healthcare professionals. A patient story can create a call for action.

  • Media Representation: Do you see your life reflected in popular media?

    Media Representation: Do you see your life reflected in popular media?

    Do you see images of yourself reflected in popular media? As a person with a chronic health condition and/or disability, is your life reflected in movies, television, print, or social media?

    In this themed podcast episode you’ll hear from Christophe Zajac-Denek — an actor, musician, surfer, skateboarder, and little person — whose podcast, I’m Kind of a Big Deal, explores the unique lives of people with dwarfism. Christophe has worked in Hollywood movies for 11 years but rarely do you see his face.

    Lindsey Kizer, recently diagnosed with narcolepsy, appeared in an earlier podcast episode. Her experience of narcolepsy reflected in media has usually been a joke with the character falling asleep mid-sentence.

    John Poehler is a published author and award-winning blogger in Colorado. Diagnosed with bipolar disorder in 1999, John’s memory of mainstream media’s representation of people with bipolar disorder was far from accurate.

    Daniel G. Garza, an HIV/AIDS patient leader, advocate, and educator talks about the first movie where he saw characters portrayed with HIV/AIDS. Daniel has a blog/podcast and YouTube channel.

    Ania Flatau, an avid dancer born with spina bifida, was featured in a previous podcast episode, Ania has never seen spina bifida represented in popular movies or television but she is quite proud of a certain wheelchair skater, Aaron Fotheringham.

    For those with myotonic dystrophy, like myself, all we have is this documentary, Extremis.

    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 welcome to the glass apple it’s our first episode for 2021 took a little break no vacation just working on social media the website search engine optimization oh so many things behind the scenes but we’re back this episode is all about how we’re represented in popular media on television in movies print and social media whether we have a chronic illness a disease and or disability are we seeing ourselves reflected in popular media i know i’m not i think i can safely say i’ve never seen a character with myotonic dystrophy on a tv show or in a movie well there is a documentary it’s called extremists extremists extremists and it’s about a palliative care doctor and one of her dying patients has myotonic dystrophy it was incredibly painful to watch and several years ago there was a tv medical drama called royal pains i didn’t watch this series but i saw facebook posts from people in my patient community that there was an episode that mentioned myotonic dystrophy so i mean sure i found that episode i uh i marched it only to be let down it mitotic dystrophy was mentioned as a possible diagnosis for a patient i don’t even think you saw the patient but it was quickly discounted so like you could sneeze and miss the whole thing so again to thinking about the power of medium representation over the last few months i’ve interviewed a few people people with different health conditions or disabilities to hear if they felt represented in popular media the first person you’ll hear from is Christophe Zajac-Denek that’s a hyphenated last name not just multi-syllabic i met kristoff at a virtual podcast conference he’s originally from detroit but because of his avid interest in surfing skateboarding and punk rock he made his way to southern california Christophe identifies as a little person and has a podcast called i’m really a big deal he shared with me that there are between 200 and 250 different types of dwarfism and people exhibit different symptoms depending on which type of dwarfism they have the condition that Christophe has is called cartilage hair hypoplasia in your lifetime how have you seen the media change in the representation of little people and when when did the term little people become i’m assuming it’s acceptable yeah like are people that you met in your community do any people resent that term or is it a term that came out of your community sure yeah those those are really important questions the tour i’ll start with the term little person the term little person is acceptable um you could also say dwarf however when i’ve posed this to guests on my show some of them have strong feelings

    in us in a way that they don’t that doesn’t define them and so they don’t want to be called a little person or a dwarf they just want to be called by their name and just like we all do you know your condition does not define who you are so in that same breath that’s the same with us you know little person is it’s it’s fine it’s pc so is dwarf you know um [ _ ] or the m word as people refer to it as is not okay um you know but words are just words in a in a sense and if if somebody actually wants to come up and have a conversation with me and say you know if they were to call me a [ _ ] or something like that and i wanted to if i saw value in the in the conversation or you know where where this was somebody that was just maybe misdirected or something like that and even if they’re not you know it’s still okay to say hey that’s offensive and that’s not all right to call somebody out like that my name is Christophe in fact another guest on my show does that and he is incredibly brave um whether they call him out as an offensive term or not he will go up to people and say hey you know the proper terminology is this but also my name is joseph and it’s nice to meet you and i was born this way and he interacts with kids on this level and i i never would be i i’ve never been able to do that before you know maybe this past year or two because you know it’s still accepting yourself and all of my friends that i’ve shown that to as well they’re like that’s so cool i don’t know that i got the balls to do that just to you know go up to a mother and a child and to confront the situation and and because with each situation that passes if it’s not rectified or if there isn’t some sort of positive interaction or a teaching moment or something like that that’s a moment that’s lost and that’s another moment that goes by where it’s okay to maintain confusion about how to interact with us or other people with disability you know and to me the whole reason why we have that is because the media doesn’t include us you know i’ve worked a lot of show i’ve worked in hollywood for 11 years and you’ve seen my face once maybe twice you know and it’s not because i haven’t worked it’s because hollywood covers me up for everything you know my face is covered in prosthetics or makeup or just costumes and masks and crazy wardrobe and things like that and trust me i want to do that stuff because it’s fun and i can do that stuff and i need the work so please pay me but also you know you just complimented me on my face and i’m not searching for compliments but i’m not this disgustingly grotesque object that seen in a commercial or in and i’m not saying myself i’m saying all of us you know everyone everyone that meets my friends with dwarfism think that they’re incredible they’re like your friend is so cool how they’re so awesome i never you know knew another little person before them or you know before you or whatever and it’s the personality that shines through right and that becomes inaccessible when little people are hired as props or just warm bodies to move around a costume or some foam or something like that and so that’s how i see how society sees us you know and it’s taken me a long time to figure that out because remember how i said i would get paid you know 10 to 100 times as much you know in a costume as i would get playing music well there’s the there’s the hook right there right money but then once you start to think about it and you you’re thinking okay well i’m i’m not getting any equity on my face or my skill because i’m in a costume they could have hired anybody and there’s just a list and if whoever said the first yes is going to get the job so it doesn’t matter you know what i look like in that regard and i think that that’s sad and i i do think some stuff in hollywood is turning around for the better with that i mean peter dinklage is blazing a trail and he’s awesome and i’m i’m really proud of him and what he’s done and the station agent i love that you mentioned that film that film is is incredible that when i first saw that i was thinking who knew who knew about me this is crazy it’s actually i’ve identified with that so much and just more of that is what i think we need and you know even when there are certain things that in my eyes are exploitative i still see there’s a part of me that still sees value in you know like the little women of la and dallas in new york and stuff i mean it’s a reality show so there’s going to be ridiculous drama and things going on but still you get to see little people you know it’s it’s not i i don’t see that as steps backwards i see it as steps forward even though it’s it it’s this fantastic thing and it’s it’s reality tv and stuff like that i i respect that there’s a show that that shows us you know and and because you have to work on opening the door somehow and i think that you know what tara created is important and it’s good and it’s gotten attention of a lot of people the next person i spoke with is Lindsey Kizer in north carolina Lindsey appeared in an earlier podcast episode about coping with COVID she was diagnosed over a year ago with narcolepsy what do you think the biggest misconception people have about narcolepsy you know whether it’s friends or family members just in general i think you know most people think it is like what you see on tv you know where someone can be you know mid-sentence or you know doing whatever normal activities and they just in an instant fall asleep out of nowhere and that’s not how it happens at all you know i don’t really know where that has come from um because even that’s not even something recent as far as the past few years you know that’s been over time and it’s you know being diagnosed i really saw how people really believe that you know co-workers not really friends because they had kind of seen some of the progression up into up to my diagnosis but i’d even say acquaintances and even you know new co-workers and people that had met me after when i say have narcolepsy i get the question either what is that or wait so you’re just gonna fall asleep while you’re talking to me that question would make my would make me cringe so bad for so long how does popular media tv television books and you know i guess social media too how how do they portray narcolepsy i mean it for most people it’s a joke um you know one of the first movies that anyone ever mentions is always deuce bigelow um and he goes on the date with the girl and she just you know middle of dinner after he drops her off at the house you know she’s falling asleep out of nowhere and that really is the image for a lot of people that you know i’m gonna be talking to him or sitting at dinner and i’m just gonna fall asleep you know my face will be in my food um you know i’ll fall and hit my head something like that and a lot of them after they you know spend time with me you know they do realize that that’s not true or some of the ones that you know had that perception and had no idea i had narcolepsy you know that does change social media i do think is starting to do a really good job especially thanks to some of the organizations at trying to correct that narrative because there are a lot of people that are very outspoken about that not being the truth on social media and i do think that’s starting to but that’s definitely a big mountain to climb because it has been something that’s you know been drilled into people’s heads for many years thanks to movies tv shows and who knows where this idea came from well you know i i never saw deuce bigelow um but i did see rumblefish did you see that okay i have to interrupt for a moment now i’ve since realized it was not rumblefish i saw i mean i didn’t see that movie and it’s by the same director gus van zant but it’s his other movie my own private idaho from 1991 which features the actor river phoenix as a character with narcolepsy it’s older than deuce bigelow so maybe that’s why you haven’t seen it okay and and that was the first time i think it was river phoenix who was in it do you know who he is i have heard the name i could not think of that face off the hell in my head right now well he’s uh he’s since deceased but he is or was joaquin phoenix’s brother i guess his older brother and he was in a movie um gus Van Zant i think that’s the filmmaker and it was very it was kind of an art house movie so it’s very attractive to visuals but he river phoenix’s character did have narcolepsy and for me that was the uh first time i ever heard of the condition and i was probably in high school or college so it could be like 30 years old the movie so maybe but it was a drama and then so it wasn’t you know i it would be interesting for you to see it and then tell me what you uh what your take on the portrayal is because i i’m sure it was a bit more empathetic than a you know comedy like so many fallen you know their head in the soup or something i definitely will have to check it out because i have not seen it come up you know most of the tv and movie portrayals of it it is more of you know a comedy show or movie so that definitely would be interesting to see you know if it does have more of an accurate portrayal for sure back in october of 2019 oh so long ago when we traveled freely i went a trip to las vegas to attend the health conference i went from wego health it was a huge conference and it’s hard to imagine being in a crowd like that now but i got to meet other patient leaders from all over the country and one of those patient leaders is John Poehler john lives in fort collins colorado and he wrote a book which was published in 2020 it’s called this war within my mind based on the blog the bipolar battle i think it was right before christmas that i talked with john via zoom and we were both well bundled for the cold anyhow john really stood out for me at the conference he’s very warm and friendly so i have looked forward to including him in this podcast so you were diagnosed in 99 right right yeah so in the 21 years how have you experienced people’s reaction and understanding uh to bipolar condition you know when you when you talk to people has do you feel like people are more understanding now than when you first were diagnosed oh definitely definitely beyond the shadow of a doubt because when i was first diagnosed i know a lot of people when they are diagnosed they kind of they deny it at first they’re like oh my gosh why me i was actually really excited about it because i’d been searching for answers for a few years and so to finally have a doctor say john this is what you have and it matches up completely and not only do you have this but we can manage it it’s not like a death sentence or anything we can we just need to find the right treatment for you and so i shared it with a lot of my friends my family and so forth but i found out real quick that especially back then there was a huge stigma i lost a ton of friends um and i just i had a lot of bad experiences with broken friendships relationships because of my illness and actually i haven’t really been open about it until the past i started my blog at the beginning of 2017 and that’s when i just decided i’m gonna tell everybody you know i don’t it doesn’t matter to me anymore and i actually have a good response and that’s why you know when we met last year in las vegas you know getting that award on twitter that was really showed me wow people are starting to understand more and you know there wasn’t a wego health back when i was diagnosed there weren’t any of these huge organizations that you see now and so it’s it’s definitely a lot less i feel a lot less stigma compared to the way it was back then you know i don’t necessarily think like in you know mainstream media i don’t feel like it’s portrayed as accurately as it could but i mean it’s better than it was back then how has the media in popular media whether television books movies uh celebrities you know coming out how how has it changed over the years from my perspective just from what i’ve you know i’ve experienced when i was first diagnosed i tried to watch a bunch of the movies that you know portrayed characters that had bipolar disorder and i couldn’t relate to any of them at all it just seemed like they were more stereotypes of what someone with bipolar disorder lives with and the past few years i’ve seen a bunch of new movies come out and they’re getting closer but in terms of portraying portraying us as a character on tv i haven’t really been too excited with what i’ve seen there’s one movie i’ve seen that the director he has bipolar disorder and he acts in it and it’s an independent film and i saw it last year i previewed it and that’s probably the closest that i could relate to because it was from his story it was based on his life and i totally could relate to that so it’s come a long ways that’s for sure in terms of like actors actresses um people on the you know that you hear who are some examples of kanye west yeah yeah that’s i’m yeah that you know yeah that’s kanye west i know he i know he has bipolar disorder and it’s you know i i feel bad for him because you know i could you can see that he’s suffering and we have i have no idea obviously we don’t have any idea about personally what’s going on with him but seeing his outbursts and stuff i mean i can relate to some of how he’s acted so in terms of the reality of what like untreated bipolar disorder looks like i think that you know that he’s an example of that um but there’s others too there’s a there’s a gentleman on a general hospital in maurice something i’ve man i wish i don’t remember the name names too well but he’s a i i’ve i’ve heard him speak and i’ve read articles in bipolar the bp hope and he is great like he speaks out and i really like what he does so the the actor is on the as bipolar but not yeah yeah oh okay yeah he actually has and i think they put it in the script i’m not sure but in terms of him and talking about it it’s for me it’s it’s awesome to see someone in a light like that that has you know so many followers so many people that he’s in the spotlight and he feels so comfortable just talking about mental health bipolar disorder that’s i think that’s a lot different than way back when but then of course you know we can’t leave out carrie fisher i mean she was uh she’s been you know spokesman spokeswoman since the very beginning so and she’s been always just so cool so yeah no i always forget that uh she did come out at some for me i think the most you know just as terms in terms of a character the main one i think about is from homeland claire danes yeah you know you know how different communities i’m i’m jewish and you know when something comes out in the media and people always go is it good for the jews is it bad for the jews so i always think that different sort of minority communities do that you know so was that portrayal how did people in the bipolar community was there talk about her character and there was actually i think she actually uh spoke with uh influencer at some somebody who has bipolar disorder and kind of got she she was consulted by her and uh supposedly she used that to for character or whatnot but a lot of people that i spoke with thought that they did they didn’t portray it as well in the actual script you know as her as a character as an actress i i think she does an awesome job with it you know but she’s not the one writing the script you know and i don’t i think some of the storyline it just doesn’t really drive and make sense with some things like uh she was she stopped her medication and then she got psychotic and manic and like she took her meds again and she was fine like the next day and that’s completely you know i mean you know it’s like these meds don’t just kick in like that and it’s like oh a day later i feel 100 you know so you know just things like that so but i think it’s good that they you know the consensus from everybody i’ve talked to is the same it’s you know it’s nice seeing characters in actual the you know on screen that they’re trying to portray bipolar disorder which is you know really good i haven’t met Daniel G. Garza in person but i’ve seen him virtually many times daniel has been a long time patient leader advocate and educator for hiv aids he has a very impressive resume he’s a board of director for a health center an ambassador for a number of non-profit organizations winner of the hero of hope award for patient advocacy from ipain international foundation as well as having a number of media outlets his own podcast youtube facebook live daniel has a lot going on so this is just an excerpt from our recent zoom conversation you’ll hear more from daniel in a future podcast episode he represents two patient communities those with hiv aids and anal cancer what are your feelings about how popular media has represented you know hiv aids people with hiv aids and or people with cancer and in particular you know anal cancer i think let’s let’s say aids i think aids for a long time aids was just death people just died and one of the very first movies that i ever saw about aids was a movie called it’s my party with um eric roberts uh gregory hunt griffin heinz i think it’s rare anyway he was on on gonzo anyway uh Margaret Cho in it uh uh john is in it there’s a lot of great actors in the movie and it was about how men of that time who were positive and were dying would commit suicide and right so that their families could collect the insurance com money but they would make it seem such a natural debt so that the families would like the insurance and that was one of the first movies um interesting enough my mom and i got to see that movie together when i was really sick in spanish so after i was diagnosed her and i was it was on tv in south texas in spanish and she watched it with me and that changed her view on hiv i think media also print if you open a magazine and you see a medication for hiv and aids they always pick the most beautiful buff guys and they’re out hiking looking at the sunset and it’s so pretty but it’s not always like that medications doesn’t always no um i i think we could do a lot better i think we could do a lot more i think that we need more latino we need more spanish information out there medication doesn’t medication is good for your body but it doesn’t always make you feel great and i hope people can understand that difference like it’s good for me i know my medications are good for me i know they’ve made me strong i have a strong immune system my t-cell count is undetectable i have great hair like everything’s good but it doesn’t always make you feel great there are complications even after all these years of medication there are days when you know diarrhea happens or constipations happen or your mood swings and and i think we need to talk to people about that i i think we lost a little bit of the fear that we had for HIV um back and and people got very like oh there’s a pill like i can no yes yes there is a pill but this is not a club that i want you to join just because it’s not that bad um it it is that bad it is it it affects your mood it affects your relationships um for some people it affects your your vision of your future there are still people in 2020 that i know of who have not told their families that they’re HIV positive there are people who hide their medications in aspirin bottles so that their family doesn’t know that they have HIV so no it’s it’s yes we’ve moved a lot forward in treatment and in services but we we haven’t let people catch up yet and i think that’s where we need that in media we need that representation out there um cancer man um i think anal cancer

    is the butt of the joke and all this i think we don’t talk about it like we we should and i and i’m also guilty but i should i as a um anal cancer survivor i should be more aware of what i talk about and how i talk about it and what i say out there um and i don’t do it mainly because HIV has always been my main focus but it’s connected and i should be more of that and i think and please anybody watching or listening this is not bulletin belittling any other cancers but i think breast cancer has always been up front breast cancer has always been like the main cause that a lot of people go to when they when you hear cancer i think a lot of people go to breast cancer and then everything else falls behind nobody intended uh but i started a facebook page for us to me men with ostomy bags and

    there’s there’s lack of communication in the group i i don’t i haven’t figured out how to get people or gentlemen to talk about it it’s very difficult to get the conversations going because um cancer affects a whole lot it doesn’t just affect your body it’s body mind and soul cancer as a gay man has affected my relationship with my partner not just emotional but physical intimacy not on his end it’s all me because i i put barriers and i set up walls uh because i haven’t had a chance to sit down with other to be very specific to with other gay anal cancer survivors and go how does this affect you with your relationship how does it affect you sexually uh how do you see your body now my last guest for this episode is Ania Flatau who you may remember from the last podcast episode about dance Ania lives in southern california is an avid dancer and was born with spina bifida have you seen you know growing up or now as an adult any images of people with spina bifida they you know had an impact on you positive or negative oof um you know not really like i mentioned like in the the spinal in spinal disability spinal cord injury world i’m growing up i saw a lot of images and and like there’s even a show on tv called push girls oh yeah like all of the representation i saw growing up was people with um spinal cord injuries and um you know i grew up thinking that it was because people like people who are in the mainstream society kind of look at spinal cord injuries as like for lack of a better term sexier than spina bifida so like their stories like they they relate more to the stories of people who’ve gone through trauma than they do you know somebody who’s going to talk to you about like a neural tube defect you know and i was born with blah blah blah blah that’s how i grow up grew up thinking and um i never really saw a lot of images of like influencers with spina bifida and that’s why i feel like it’s so important for like when people with spina bifida have like their conferences and their get-togethers for people with spina bifida that they realize that like even if you’re like not an influencer and you’re not famous because you lived your life with spina bifida and you you work and you you you live your life and and do it to the best of your ability you are an influencer you don’t have to be on tv to be an influencer as long as you’re living a life and and doing something that someone behind behind the lens is looking at and going like i want to do that you are an influencer and you are making an impact um in somebody’s life i’ll give you a quick story so when i graduated from college right um i brought my friend with me who has cerebral palsy and he was struggling with the thought like do i go to school do i not go to school just the fact that he saw me graduate and that i had my diploma in my hand was enough for him to go i’m going i’m going to college like this is what i’m going gonna do and that’s what i mean like you never know who’s looking and you never know who’s like watching every step that you make and is drawing inspiration from what you do yeah i think that like you really don’t have to have that i’m famous label to be of influence every single one of us has that ability that’s my answer to that question um i think that like even though we’re not on tv it’s okay because there will be somebody in your immediate community that is going to make you go that is freaking cool i want to do that you know like you know like well okay i lied there is aaron fathering him aaron fatheringham has spina bifida and you know he’s competed in nitro circus and he’s definitely made a name for himself so he definitely is i haven’t heard of him what does he do no he doesn’t he’s a i mean i’ll google it but yeah he does um it’s i can’t remember the specific name for it but basically it’s like wheelchair skateboarding so if you if you look up nitro circus it’s this massive um like extreme sports um i don’t even know like competition like they have biking and and skateboarding and like they do all these massive tricks and he’s one of those people that like like he was the first person in a wheelchair to do a backflip on a massive like really massive skate skate ramp wow so yeah he is definitely one of those one of those people who is like you know he’s made a name for himself and and you know you throw his name out there and you have spina bifida like 90 90 of us are gonna know who he is um yeah that guy’s crazy but um i mean i would never do it but i definitely see him and i go okay he’s he’s living his best life so why can’t i you know what i mean like whatever that whatever that definition is for you just live your best life is like i think that that’s the point of being an influencer is like seeing somebody killing it and you being like i can do that too you know well i think i can say that none of us seem to be thrilled with how we’re represented in popular media about a week ago i was on a community we go health zoom call and a woman on the autism spectrum urged all of us on the call to boycott a movie i wasn’t familiar with this so i googled it and the movie is called music and sia the musical performer is the director apparently many in the autism community find the yet to be released film offensive it includes spirit stereotypes and they’re upset that the character is played by an actress who is neurotypical of course i can’t comment on any of this since i know few facts but i invite any filmmaker or writer to include a character with my atonic dystrophy in their next creative work and i won’t mind you know if elizabeth moss amanda pete or kate planned [ __ ] play her or me

    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 class half full dot online

  • A Virtual Abilities Expo

    A Virtual Abilities Expo

    Are you ready for three days of workshops, adaptive activities, and discovering resources and services to enhance your quality of life?

    Peruse the agenda, make plans for November 20-22, and register for the free Virtual Abilities Expo.

    President and CEO David Korse shares the 40+ year history of the annual event in this podcast episode as well as whets our appetite with the impressive lineup of Expo activities.

    There’s something for everyone — whether your interest is in disability rights, adaptive movement, or how to make your home more accessible.

  • When the personal is political and the political is personal: Stress on our Health

    This is part 2 of a conversation with Dalia Kinsey, RD, LD, SNS. We talk about becoming our authentic selves, how trauma impacts our physical and emotional health, and the need for inclusivity and intersectionality in public health messages.

    This is the most stressful year of our lives. We’ve got the pandemic going. We already knew about police brutality, but never have we been to a point where every time you turn on the television, every time you open Facebook, every time you look anywhere, you’re seeing another black or brown body being abused. The trauma is massive and I don’t see anyone really addressing it. And I feel like racism is what I know, that racism and all kinds of systemic abuse, these are public health crises.

    ~ Dalia Kinsey

    The first part of our conversation can be found here. To learn more about Black Joy, check out this article or video series.