Glass Half Full with Leslie Krongold, Ed.D.

Tag: myotonic dystrophy

  • 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.

  • Five Years of Self-Care

    Five Years of Self-Care

    Self-Care, or radical Self-Care, is the theme for the 5-year anniversary of the Glass Half Full podcast. This short episode features my brand of self-care — daily routines that are my sustenance, not just an end-of-the-week treat. Whether it’s nutrition, movement, or attitude my waking hours are spent minimizing symptoms associated with a progressive neuromuscular disease and maximizing a limited supply of energy.

    As part of the anniversary celebration, join me in a streaming Facebook Live event on Sunday, March 21st at 11:30 a.m. Pacific. I’ll be joined in a lively discussion on Self-Care with previous podcast guests.

    On Friday, March 26th at 11:00 a.m. you can participate in an interactive presentation, A Journey With Movement & Exercise at the Virtual Abilities Expo. Registration is free.

    You can get your own mug, t-shirt, mask, etc. at the Glass Half Full storefront.

  • 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

  • As the days go by…

    As the days go by…

    For the last few days I’ve felt un-motivated. Lethargic. Not depressed but not my usual self. Sure, we’re still in a pandemic. Sure, it’s going to be awhile before I can get the vaccine. Sure, it’s damp weather which is never good for my muscles.

    But, I think the catalyst for this malaise was finding out that a member of my support group died last week. His wife let me know the day after he passed. He and I were never close but we did have a connection.

    The first year of a longitudinal research study I participated in across the country in Rochester, New York, he also participated in. In fact, I discovered he changed his date of participation to coincide with my visit. At that time, it creeped me out. It was a two-night hospital stay with lots of diagnostic testing and a muscle biopsy. The last thing I was interested in was making a new friend.

    He apparently never felt rebuffed and continued to seek my friendship in and out of the support group. In fact, he even photographed my wedding, in 2008, to my female partner. This may have been a stretch for him since I assumed him to be of a different political persuasion than myself. This was before 2011 when marriage equality was federally granted; hearts and minds still weren’t quite ready yet.

    Over the years I met his wife, and adult children, and felt a kinship with him though in the last few years I had a difficult time understanding his speech and he wasn’t keen on communicating via email or Facebook. But, I considered him a friend. Occasionally, he’d ask me questions related to my experience with specific myotonic dystrophy (DM1) symptoms.

    During the pandemic I started doing virtual support group meetings every two weeks. He never joined but I assumed he got his support from his family which now included a few grandchildren.

    When his wife messaged me, I wasn’t surprised. I was sad but in the last few years I’ve seen many of my support group members — and larger international community of DM1 friends — pass away. Mostly due to respiratory complications. I’m somewhat numb to it.

    Since this man wasn’t much older than myself, I can’t help but experience his loss partially as a nail in my coffin. I responded to his wife with an appropriate response but I had to make sure she knew about the BioBank at our local research university. I know this was of great solace for other families when they lost their loved one so I have to assume others may find it useful.

    And so, life goes on. Days pass and I feel more alive than having one foot deep six.

  • Learned Helplessness or Empathetic Empowerment: Patients, Relationships & Psychologists

    What do you do as a patient with a progressive health condition that renders you unable to do certain tasks? Do you ask for assistance or find a work-around to accommodate for that situation? Once you ask for help, how does your relationship with your helper change?

    Empathy word cloud

    Learned Helplessness is, according to Wikipedia, “a condition in which a person suffers from a sense of powerlessness, arising from a traumatic event or persistent failure to succeed. It is thought to be one of the underlying causes of depression.”

    Psychologist Martin Seligman coined the term, learned helplessness, in early research he did with animals, and eventually humans. This New Yorker article, “Trying to Cure Depression, but Inspiring Torture,” briefly describes different applications of the research.

    In this podcast episode, Mike Hamlin, a man with myotonic dystrophy, sets the tone with a friendly rant. Melissa Dixon, Ph.D., a researcher and professor (Psychiatry and Behavioral Health and Pediatric Neurology) at the University of Utah, discusses learned helplessness with children and adults and how it impacts relationships and suggests empathetic communication styles.

  • 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

  • Let’s Rant: Unhelpful Advice

    Let’s Rant: Unhelpful Advice

    It’s April Fool’s Day so we’re mixing things up with an unhelpful advice rant. One can’t be positive 100% of the time. Now is the opportunity to share about all of the weird things people have said about our health conditions — whether it was a friend, an aunt, or even a health care professional.

    Perhaps well-intentioned but definitely not insightful nor helpful advice. Most people with some type of chronic health condition have had this experience.

    A panel of three previous podcast guests share their stories — from the hilarious to the frightening. Nancy, Melissa, and Laurel let it all out.

  • 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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