If Emma Goldman were alive and experimenting with the virtual life, she may have said something like this. Why not dance through the pandemic? It’s good physical exercise, ignites oxytocin, and can bond you with a community.

Yagmur Halezeroglu and Tess Hanson from Dance for All Bodies (above) and Ania Flatau from Wheelchair Dancers Organization

Several accessible dance organizations have brought their talents online and thus expanded their reach nationally and internationally. One organization, Dance for All Bodies, co-founded by two recent UC-Berkeley grads — Yagmur Halezeroglu and Tess Hanson — feature a variety of professional dance instructors teaching accessible dance in a variety of styles from salsa to urban jazz and even chair tap.

Another group, Wheelchair Dancers Organization, pairs wheelers with walkers, and offers online classes in Island Fusion, Hip Hop, Latin Jazz, and Bollywood. One of their wheeler instructors, Ania Flatau, also offers dance classes on YouTube Live through her Facebook group, Cat Daddy’s n Krew Virtual Fitness with Ania.

Loose Transcription

Hello…in this podcast episode I’m sharing more of my pandemic experience with you. A couple of months ago I interviewed two people affiliated with BORP – Bay Area Outreach for Recreational Programs. BORP is an amazing organization that has really stepped it up during this bleak 2020 by providing online classes.

But BORP is not the only group helping us cope physically and emotionally. Today you’ll learn about two other nonprofit organizations — Dance for all Bodies and the Wheelchair Dancers Organization.

My first guests are Yagmur Halezeroglu and Tess Hanson. They are the co-founders and directors of Dance for All Bodies which you’ll hear them speak about as the acronym – D FAB.

I found out about this online dance program through dance friends I met at Rumba with Tina which I attend on Saturday mornings. D FAB is relatively new and features a variety of professional dance instructors teaching accessible dance in a variety of styles – salsa, Flamenco, Brazilian, Hip Hop, Contemporary Ballet, Urban Jazz, Diaspora, and Chair Tap.

It’s fun, it’s educational, and it’s a good work out.

I asked Yagmur and Tess how they met.

Tess

“…we went to UC Berkeley” – applied for same job – Cal Performances. Ushers, assistant managers. Met fall semester. Yagmur had a lime green backpack. Realized we both loved dance.

Yagmur

DfAB started a one-time dance class I organized at hospital. Amputee community. Amputee support groups. There is a gap the way we view dance. Taking action and making change support what you believe in. Tess and I put this idea together. Big Ideas competition. How can we scale this class? Worked with AXIS dance company in Oakland. I ask about her work with the blind. Tess talks about the beginning. One of her brothers is autistic; James is a part of my life.

Now that both Yagmur and Tess have graduated, I was curious to know how they envision the future of D FAB.

Yagmur

We’ll just take It wherever it goes. Tess naively thought we’d need a year to get it sorted out. So many ups and downs. It feels like a good, worthy work in progress. They met at BORP at Ed Roberts. Once the pandemic hit, our lives just changed. Let’s try online…how did you find dance instructors? Judith Smith helped find instructors. Stephanie, Janpi – through word of mouth. Dancers with disabilities. We want to connect these dancers with experience choreographing.

Yagmur

Looking for partners and sponsorships. Challenges we’re facing. Initial award. Crowdfunding campaign in late March. We don’t have a source of revenue beyond donations. We want to compensate the team. Bring our classes to new audiences. Spread beyond our little bubble. Partner with a hospital. adaptive dance in schools.

I asked Yagmur and Tess how they feel about the past year and all of their accomplishments.

Tess

Tess talks about how people feel after the class; we get lovely messages that provide the fire to keep going. Can I do this? I’m really proud of the partnership with Wheels of the world – an accessible travel organization. We had a lot of classes in rapid succession.

As you can tell these young women are quite inspiring. I had just assumed they were both dance majors but they weren’t. Yagmur studied cognitive science and hopes to pursue medical school and Tess studied environmental health and policy and is currently doing field work for a water conservation group.

You can learn more about their organization by checking the links on the Glass Half Full website.

My next guest is Ania Flatau. I met Ania earlier this year because she was one of the instructors in an Island Fusion dance class I took offered through the Wheelchair Dancers Organization – or WDO. WDO was founded in 2008 in San Diego, California by Beverly Weurding – a woman who has Limb Girdle Muscular Dystrophy. Ania’s been attending WDO classes for the last four years.

I first asked Ania about the organization.

Ania

The classes are for disabilities…we call them rollers and walkers as partners. All the classes are for all abilities, all levels. Teachers who roll, teachers who walk.

Ania

Tell me about your love of dance; what were you drawn to? My parents are from Poland. When I was in high school. I was an athlete. I thought I was a bad ass. I felt so uncomfortable; he was pulling my arm. At the end I was so uncomfortable that I wanted to figure out how to do it right. One summer I took a trip to Poland and my parents found a dance camp for wheelchair ballroom. These dancers…dancing for six hours/day; they were training for the world championship. They kicked my butt. I remember feeling challenged…that’s where my love for wheelchair ballroom started. I started to feel more and more comfortable with my body. I felt a oneness that I had never felt before. I was…a senior in high school. I got into those fields because of the wheelchair dance.

Ania

Ever since that dance camp I’ve been doing something dance related. It makes me feel like I am centered in a world. Being a person with a disability…disconnected from your body. I feel present and centered.

Ania

I teach a dance fitness program world of dance u jam. We partnered with world of dance – a massive network. The songs are urban, like hip hop. When covid hit I…how am I going to get my fitness on? I was toying with the idea of teaching virtually. I created a Facebook group. the name is cat daddy’s and krew virtual fitness with Ania. A hip hop dance move called a cat daddy looks like you’re rolling a wheelchair. I was trying to find a creative way to honor the culture where hip hop came from and have an ode to the dance…cat daddies are wheelchair users and krew is everyone else.

So there you go…I learned something about hip hop. You can find out more about Ania’s Cat Daddy and Krew on Facebook; I’ve got a link to her group in the podcast notes and her YouTube Live classes are free. Ania told me she likes the accessibility features  like the captioning that are available on YouTube. If you have any questions about modifications for the dance moves, she’s more than welcome to meet with you – virtually – to suggest options.

I hope you’ve enjoyed this episode but more important, I hope you check out the dance classes available at Dance for All Bodies, Wheelchair Dancer’s Organization, and Ania’s World of Dance U Jam.

Loneliness is a public health issue. It was before the COVID-19 epidemic forced us into social isolation. Former U.S. Surgeon General Vivek Murthy called loneliness a “growing health epidemic,” and even wrote a book about it – Together: Why Social Connection Holds the Key to Better Health, Higher Performance, and Greater Happiness.

Image of the back of a woman on a city street.

In the United Kingdom they take this issue very seriously and now have a Minister of Loneliness. Sophie Andrews started an organization called The Silver Line which is a helpline for lonely and isolated seniors.

Does loneliness impact those with chronic illness and/or disability more than the general population? Curious to know how you rate on the Loneliness Scale or maybe you’d like to take a quick quiz for a less robust assessment.

In this podcast episode we explore that question as well as the antidotes for loneliness. In this presentation for the University of Utah’s Program for Inherited Neuromuscular Disorders, I discuss how I’ve handled social isolation during the pandemic.

My friend, David, talks about the Big & Mini online program he’s become involved with as well as Quarantine Chat.

Although geared toward an older audience, Humana has a toolkit full of ideas on how to combat loneliness.

Loose Transcript

This podcast episode is about Loneliness. My interest in this topic was sparked a year ago when I heard a British woman – Sophie Andrews – speak at an event I attended. She had already done a TED Talk two years earlier. Her story is a captivating one, which I won’t go into now; you can check out her 15-miin video online. But due to her early life experiences, she learned how a listening ear can change someone’s life direction. She founded an organization called The Silver Line which is a helpline for lonely and isolated seniors.

In Sophie’s talk – as well as in subsequent articles and books that have been written – we learn how loneliness is of epidemic proportion. Research studies have found that loneliness and social isolation is often correlated to high mortality rates and deterioration of both physical and mental health. In the UK the concern about this public health issue has launched a new government position – the Minister of Loneliness. Seriously. In 2018, Tracey Crouch became the world’s first person to assume this role.

The former U.S. Surgeon General, Vivek Murthy, called loneliness a “growing health epidemic,” and this past April his book, Together: Why Social Connection Holds the Key to Better Health, Higher Performance, and Greater Happiness, was published. I have the book, started reading it but unfortunately I’m far from finishing it.

 

But, earlier this year, I was taking my first-ever class in public health – at a community college in downtown Berkeley —  and decided my final project for the class would focus on loneliness in the chronic illness and/or disability community. I was curious to find out if this was similar to what is explored with older people as well compared to the general population. Is Loneliness more common in our community regardless of age?

 

On March 1st of this year, I posted a poll in the Glass Half Full Facebook group with 6 responses to the question, “Do you experience a sense of Loneliness?” It’s a small sample but the response, “Yes, I often feel lonely even though I have friends and family” received the most votes followed by “My loneliness is a symptom of being homebound with limited exposure to people outside of my family.” Personally, I don’t know most of the respondents though two of them I do know. They’re both caregivers. And they’re lonely.

 

And just as I was starting my research, I stopped going to the class due to the pandemic. How ironic to be taking a public health class that is pre-empted by a pandemic that creates an even more powerful experience of loneliness and isolation.

 

I did have time to gather a few academic research articles relevant to the topic but it is certainly not an exhaustive body of literature. I have no definitive answer to the question – is loneliness greater for those with chronic illness and/or disability? I mean, right now…so many of us have dramatically changed our social networks. Hopefully, many of us have found some solace online; I mean the Zoom stock has skyrocketed. I use Zoom almost daily. But, I digress.

 

The five research articles I found are from different journals – Cognition and Emotion, Caring Sciences, Social Psychiatry, Social Behavior and Personality, and Community and Applied Social Psychology. Three are European studies – Dutch, Danish, and Norwegian — and one Canadian and one from the U.S.

 

Most of these article reference Robert Weiss who in 1973 conceptualized loneliness as perceived social isolation and described it as a gnawing, chronic disease without redeeming features. He identified six social human needs that if not satisfactorily met lead to feelings of loneliness. The needs are Attachment, Social Integration, Nurturance, Reassurance of worth, Sense of reliable alliance, and guidance in stressful situations.

 

So if you start with Weiss and his theory on loneliness from 1973 you can find 47 years’ worth of discussion. But, I didn’t dig deeper and I assume you won’t either.

 

So…isn’t loneliness normal at different times in our lives? Like, depression is something many of us have experienced from time to time. I’ve gone through brief periods of depression linked to an unfortunate experience but I’m not clinically depressed. I’ve also experienced a sense of loneliness at different times. Although I had many friends throughout grade school, I really didn’t feel heard or understood until my first year of college when I embarked on my first true romantic relationship. That’s a powerful feeling and unfortunately, more rare than I’d care to admit.

 

Robert Weiss, in fact, does make a distinction between social loneliness and emotional loneliness. Perhaps right now, during the pandemic, many people feel more of a sense of social isolation but still maintain a sense of emotional contact through the phone, internet, or at a six foot distance.

 

I can remember being at parties, surrounded by friends and acquaintances, and feeling alone. Just not in the groove of connecting with others. And I’ve been in situations where I was surrounded by dogs – at someone’s home when a party was taking place – and finding solace and connectedness with the dogs, rather than the people. Okay, that was a slightly drug-enhanced experience. But, the point is…being alone and lonely are not synonymous. And feeling lonely can be temporary or in some cases, the norm.

 

Let me get back to these articles I read. Only two of the five were specifically related to people with chronic illness and/or disability. In the Danish study they wanted to find out who were high risk groups for loneliness. They used a self-report survey with over 33,000 Danish citizens and found these factors were associated with a higher risk of severe loneliness – being a member of an ethnic minority group, receiving disability benefits or unemployment, living alone, having a prolonged mental disorder or psychiatric treatment. Severe loneliness was reported for just under 5% of those responding to the survey. Another 16+ % of the group were classified as moderately lonely.

 

One article teases out the distinction between solitude and loneliness whereas solitude expresses the glory of being alone. This article also briefly examines social isolation among the non-human animal kingdom and cites studies where fruit fly’s lifespan was shortened, obesity and type 2 diabetes developed in mice, the immune system of pigs was impacted, and other negative physical responses in a number of animals – all due to social isolation. The Canadian study compared a group of 274 adults with physical disabilities (MS, osteoporosis, Parkinson’s disease, arthritis, and “other”) with a group of 319 healthy adults without chronic illness. Each participant responded to the Loneliness Questionnaire and sure enough there was a statistically significant difference for people with chronic illness. They had a greater experience of loneliness as compared to the general population.

 

So…what’s the antidote? What can we do about it?

 

Before I skip to the brighter side of this theme, are you wondering how lonely you are? I mean, how do you compare the experience of loneliness? We all have different expectations from our varied social networks. And I’m not talking about the movie with Jesse Eisenberg portraying Mark Zukerberg. A social network, or support network, or social circle, essentially refers to humans in your orbit. A network of social interactions and personal relationships. This may include family, work colleagues, friends, or even the barista at the coffee shop you frequented every day…before the pandemic.

 

I tend to think of my social network as the people in all of my disparate little communities – my life partner, my neighbors whom I tend to see more frequently than most friends now, all of my Zoom buddies from dance and exercise classes, book club, support group, happy hour with my high school graduating class…

 

I strongly believe that my ever-expanding panoply of small groups helps me combat loneliness, helps me be resilient. Sometimes I don’t feel these connections as deeply intimate; I mean, how close can you be to many people? I’m not saying quantity wins out over quality…but…over time I have re-adjusted my expectations.

 

But let me get back to the antidote. I hope to shed light on all types of resources and inspirations for you to mitigate some of the loneliness you may experience.

 

So, how lonely are you? right…that was a question I posed. Considered the Gold Standard, the UCLA Loneliness Scale is a 20-item scale designed to measure one’s subjective feelings of loneliness as well as feelings of social isolation. I’ve provided a link to this in the podcast notes at the Glass Half Full website. There’s also a shorter, and less robust, quiz available at the website. I scored 19 which puts me at average for feelings of loneliness.

 

But how you score isn’t really important. It’s how you feel.

 

Last week I received a sample issue of O in the mail with my AARP magazine. O is Oprah Winfrey’s magazine. I was flipping through the magazine and saw an advertisement for a special O supplement called The Power of Connection: Your Guide to overcoming loneliness, building community, and finding joy in every day. Now, I’m not suggesting you go out and buy this. It’s pricey; I got it on Amazon. And I certainly don’t profit from this announcement…no free cars for me. But, it’s pretty good. Far easier to digest than the research journal articles I read and most of the short articles reflect solid research. And there’s stuff in there – antidotes for loneliness — that I’ve talked about – book clubs, exercise classes, support groups. Hell! Maybe Oprah’s been listening to the Glass Half Full?

 

The antidote is Connection. We are social animals. We need each other. Sure, there are introverts and extroverts. But…whatever dosage you require, we still need each other. And pets are great. We’ve got five cats. I love them. But, I still need to connect with other humans. To laugh. To converse. To listen to and be listened to. Even to argue with.

 

Sometime last year I listened to a podcast interview with Vivek Murthy, the former U.S. surgeon general I mentioned earlier. I believe he said, “Loneliness is a subjective discrepancy between our actual level of social connection and our desired level of connection.” We’re all different in terms of how much connectivity we require. He spoke of a few antidotes but stressed one solution is serving other people. It shifts the focus away from you and reaffirms that you have value to offer.

 

In October I spoke at an online conference for the University of Utah’s Program for Inherited Neuromuscular Disorders. The title of my presentation was Making Connections. I spoke about my early experiences of forming social networks and what I’ve been able to cultivate during the pandemic. I invite you to check it out; perhaps it will spark some ideas for you?

 

One of my friends, David, has found unique ways to connect with others during this period. David lives alone. According to the U.S. Census Bureau survey in 2018, 28% of households in the U.S. are occupied by only one person, and this number is increasing. David doesn’t have a chronic illness or disability but, as I said, he lives alone and is a young older person. In one of the research articles I read for this topic the researchers assigned names for different age groups; apparently I’m middle-aged, at least for two more years. And David, who is ten years older than me, is a young, older person.

 

Anyhow, we had a conversation about two things he’s discovered during the pandemic – Quarantine Chat and Big and Mini.

 

If you check the Glass Half Full website there’s a link to a video about the Big & Mini program featured on the Today morning show where David makes a cameo appearance.

 

Another antidote for loneliness that I gleaned from an article in a magazine is to focus on increasing your circle of concerns as opposed to your circle of friends. It helps shift your focus to a collective connectedness where you can feel a part of something bigger than yourself.

And on that note, I wish you well.

 

 

 

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.

Believe it or not, this episode has nothing to do with the recent U.S. election. We’re celebrating the 100th podcast episode of the Glass Half Full. But feel free to celebrate our right to vote in a democracy. All good!

Short video from the Glass Half Full YouTube Channel

If you’re a recent Glass Half Full listener, you can now peruse the archives of evergreen content that fall into these categories:

  • Advocacy
  • Alternative Healing Modalities
  • Autoimmune Disorders
  • Cancer
  • Cardiovascular Disease
  • Caregiving
  • Coping
  • Disability Rights and Accessibility
  • General Health
  • Laughter
  • Mental Health
  • Movement
  • Music and the Arts
  • Nature
  • Neurological Conditions
  • Nutrition
  • Relaxation
  • Research
  • Social Support
  • Spirituality
  • Technology

If you’re running out of ideas on how to cope with COVID, check out this list of 50 different ways to spend your time in a safe and sane manner. If you’re in need of online accessible exercise and relaxation opportunities, check out this page.

To learn more about Judith Nangekhe Nk, the health service worker and caregiver in Kenya, here’s a video.

Please visit the Glass Half Full store. You can buy t-shirts, mugs, stickers, and even face masks with the Glass Half Full logo.

Transcript:

Hello and welcome to the one hundredth podcast episode of The Glass Half, I’m Leslie and I can’t believe I’ve been doing this for over four and a half years. Some people might reach their one hundredth episode during the first year. I guess if you put out two episodes a week, you’d get there, you know, a little more than a year. People do, I know, five days a week. What does that mean? I don’t want to do the math, but.

You know, you get to your 100th episode when you get there and and I’m here and I’m.

You know, four and a half years ago, my intention was to take what I’ve learned over, I guess at that time it was about 19 years of being a facilitator of support groups for adults with neuromuscular disease to sort of take that experience, the knowledge, my my desire to share resources and knowledge, share my journey as a, quote, unquote, patient with others. All of that was the catalyst for.

This enterprise called Glass Half Full on the name, the term, everybody’s familiar with the term, but it hasn’t been something I thought about a lot. But probably within a few days of deciding to do a podcast, I thought of the name. I thought, well, I really do think that’s my attitude maybe when I was younger was as positive. But certainly over the years, at some point, maybe in my 30s, things shifted and I started to see life. You know, as certainly more positive looking toward, you know, how to make the best of something, the proverbial lemonade out of lemons, and that was when I was diagnosed was in my mid 30s, so. Anyhow, I I would hope that kind of perspective resonates for you, that’s why you’re tuning in now for the first time or for the hundredth time, how many of you out there have listened to all 100 episodes?

I don’t know. I don’t know how many there are if if you’ve done it.

I would love to know and your reaction is one of the. It’s one of the things that definitely can increase is communication from people who listen to the show. And, you know, I in fact, I was thinking of some of the highlights of the last four and a half years, it has been really I mean, you know, imagine you’re creating something every couple weeks, putting it out there in the world and, you know, you know several listeners. I mean, at least I do from my patient community, some friends, but. It’s been really wonderful when people contact me, you know, total strangers and they tell me they listen to the show or they’ll talk about something they learned from a previous episode, you have no idea how significant that can be to me or to someone who’s putting stuff out there and not really making money from it and doing it because they have a passion. So I invite you to to let me know. And there are many ways to contact me. I’m not cloistered in the middle of the woods. I’m fairly accessible. So I thought of three big things and, you know, impacted me over the, you know, nearly five years I’ve been doing this. Well, one was certainly hearing from people who listen to the podcast, whether it’s email or Facebook comment on the Glass Half Full webpage. But I have been to places where I met someone.

And when they hear my name, they or they hear about Glass Half Full, they, you know, tell me they listen to it and they’ll hopefully, I don’t think is sure that they didn’t like this show. But that has been really great. Another great thing has been, you know, over the years heard about different patient organizations, patient leadership groups, advocacy groups. And I met a lot of people through Those are the people living with a chronic health condition or disability who are doing their own thing, whether it’s a podcast, a blog, they’re fierce advocates and going to Washington, you know, or their state capitals. There’s just a lot of very amazing people, inspiring people interviewed several of them, too. But just about a year ago, I won trip from this group called Wego Health, and it was a free trip to Las Vegas where I was with, I guess, about 20 other patient leaders. And it was a conference that I can’t remember seeing HLTH. Ostensibly, it has some kind of meaning as an acronym, I think. But it was it was a huge conference of, you know, movers and shakers in the health, medical, technology arena. And I never would have gone to this without winning a free trip because I think it was a twenty five hundred dollars. So that that was really cool.

Never would have happened without this podcast. And another thing I don’t think I’ve ever talked about. And this is just, you know, representative of meeting people you would never meet, I had taken over a meetup group for people with chronic health conditions. This is when, you know, pre-COVID, people met in person. And I it was I think it was meant as a support group. In any case, I took it over because I wanted to reach people with other conditions, you know, outside of neuromuscular disease. And I like doing field trips to in the San Francisco Bay Area. There are just so many amazing organizations and resources. So I was doing like field trips and it was online. But the you know, ostensibly you’re you’re connecting with people who live in your region so that when you actually do meet up in person, you know, it makes sense because you live near each other. Well, it turned out there was a woman who was part of this meetup group from Nairobi, Kenya, in Africa. And her name’s Judy. And I guess we chatted a little through meetup and she told me she was in Africa. And I knew well, she’s probably not going to make it to any of our in-person meetings. And somehow I can’t even remember how one thing led to another. But I felt that she was a health services worker.

She worked with people affected by HIV and AIDS. And I’m still I don’t know if she’s a nurse, but it sounds like she does a lot of nursing and administering of materials and education, so. We tried to talk, but at that time, maybe two years ago, her cell connection was really unreliable. But I worked on a video. It’s on YouTube, I think it’s called Judy: Caregiver. I did a video for her and she really appreciated it. And just recently, she asked if I can do another one. And she was able to provide audio files so it’s in her voice. And so that it just it just dropped last week. It’s on the Glass Half Full YouTube channel and. I think it’s Judy and her last name, which I can’t pronounce, but you’ll see it there just came a week ago. Anyhow, she’s using it to raise money through different churches in the West. I assume U.S. Canada, maybe Europe to English speaking countries raising money for the work that she’s doing in Nairobi, in and out, in and around Nairobi. So those are just some examples of things that never would have happened had they not started Glass Half Full. By the way, this is not scripted. If you if you didn’t know mostly I write a script because right now we’re at 18 minutes. And if I you know, if I’d written a script, I’d probably be at 12 minutes.

Oh, maybe 10. So just thought I’d do something novel. There’s a video, a short video that’s in five minutes showing. All these different images from, you know, almost all of the 99 podcasts and it’s on the website, it’s on the YouTube channel and I have a few actual video clips in it. One is part of an interview with Susan Jermey. There was an interview I recently did. She’s a comic and playwright. Another is a clip with Mike Muir, who is the great grandson of John Muir, and it’s at his ranch. If you listen to that podcast episode about three years ago, Mike, has he was diagnosed with M.S. years ago. I think he might have been a teenager he was definitely younger. And he he has this accessible ranch, horse, ranch, and he does carriage rides. And so he uses a wheelchair and the ranch is open, you know, for adventures, for all different kinds of people, kids and adults who use wheelchairs. And it’s, you know, accessible experience. So I have a clip from that. And then I have a clip from Melissa Felsenstein, who is a sound therapist, sound meditation practitioner. She uses gongs and crystal bowls and all kinds of different instruments. And the podcast episode with her, I think was about two years ago.

Andhow, she’s she’s still doing her thing and doing it via Zoom now. So I invite you to check out that video.

And in the course of putting that together, the video, I went through the whole archive of ninety nine podcast episodes. And by the way, most of these episodes are what you call Evergreen. They are. You know, they they’re relevant now, as relevant as they were when they were published, you know, three, four years ago, some of them are tied to events that have happened in the past. But it’s always been my intention to put together, to produce an episode that has lasting value, you know, so unless There was something, you know, we talked about and it’s now been proven to be not good for you, I can’t think of anything. I think, you know what, I do focus on alternative healing modalities, but nothing that is so far-fetched that, you know, in two years, somehow it’s been found to be not good. So anyway, the point is, if you haven’t heard a lot of the episodes, go back, check them out. And now there’s a feature on the home page where you can search by category. So, you know. I didn’t know how many different categories I would have, but I went through and I identified 21 categories. OK, so I’m going to tell you the 21 categories now. So if a couple of these pique your interest and you haven’t heard episodes relevant to this theme or category, go to the home page GlassHalfFull.online I found that online and check them out. OK. Drum roll please.

Advocacy, alternative healing modalities, autoimmune disorders, cancer, cardiovascular disease. Caregiving. Coping. Disability rights and accessibility. General Health. Laughter. Mental health. Movement, Music and the arts. Nature, Neurological conditions. Nutrition, relaxation. Research, Social support. Spirituality. Technology.

There you have it, 21 different categories, now some podcast episodes, you know, cover two or three of the categories. So they would come up, you know, in a few different searches. But it’s a drop-down menu. Hopefully it’ll make it easier for people to look at the

Archives, the library of episodes. Another thing that you find that’s new on the Web site is a link to a storefront, So over the past four and a half years, I’ve given away some Glass Half Full schwag, mostly mugs. I have had some T-shirts, a couple hats. But now you can buy whatever you want. You can buy a face mask with the Glass Half Full logo on it. And this is all through a company. I won’t name them. If you go to the website, check it out. But this is one way for me to capture a little revenue and for you to help promote the podcast and the concept. Of Glass Half Full and positive psychology, positive vibes. I really appreciate if you want to get any of your holiday gifts. I mean, imagine if you got each of your family members a mask. You’d be helping them with their health and you’d be helping me and hopefully helping other people who see the mask and think Glass Half Full, I want a piece of that. So. Spread the goodwill. Well, I don’t want to make this whole episode about promoting Glass Half Full, but what can I say? It’s a hundred. It’s you know, it’s that point where you want to celebrate and also continue to grow. So, you know, I’ve seen an uptick in downloads over the past few months.

I’ve been working on some SEO, which is search engine optimization, which is not fun. But seeing results does motivate me to do more of that. And really, if you if you’re not familiar with the term, it’s just tweaking things, you know, on the website with text and keywords that will help for searches when people go to the Internet and want to search for, you know, under a health condition or just a concept, maybe it’s, you know, November and they’re, you know, thinking about gratitude and they want to learn more about gratitude so they can practice gratitude. Well, will Glass Half Full come up in that search and gratitude? I don’t know. I’m working on it. I hope so, although gratitude is one of the themes I think I have gratitude covered under spirituality, which, you know, this is all in my head, too. And it’s not like rocket science. I could have gratitude as one of the categories, but I try to be a little more open ended with the with the categories, I didn’t want to have like 100 categories. So there is also a link on the homepage for accessible exercise. And I would say that accessible exercise as a resource is also a part of this other page I put together just a couple months ago at. I spent time on this 50 ways to cope with covid, so I haven’t been promoting that; it was a special feature for some groups, but now I’ve opened up, unveiled that it’s open to the world.

If you feel like you’re running out of creative ways to save your sanity during lockdown or, you know, the cases now are surging or the COVID cases are surging. And during these winter months, it’s going to be even more important to refrain from. You know, being in other buildings, being around a lot of people, we’re just taking our time, we want to protect ourselves. I have only been in one other building and it’s nine months other my house. And that was to, you know, Kaiser Permanente, the health facility I go to for some minor stuff just one time. So anyhow, what am I saying? That’s why I used the script. So 50 ways to cope during covid. I invite you to take a look at that article and accessible exercises, part of it, but so are a lot of other things. I am also doing covid had two speaking engagements, of course, via Zoom Virtual, but I wanted to share them with you. They’re listed on in the podcast notes for the 100th episode. So one is a presentation I did on nutrition and maintaining immunity during covid and that was for a Muscular Dystrophy Canada organization.

But it’s, you know, a YouTube video so anybody can watch it. And the other one, I’m very delighted to say, is that I was the keynote speaker at the Utah Program for Inherited Neuromuscular Disorders Family Conference, and that was just about, I think, three weeks ago. And then also on YouTube and I spoke about making social connections and talked a little about my background and what led me to become now a master of social connections. But certainly I’m as I would say, Malcolm Gladwell would say, I’m kind of a connector. At the end of that, toward the end of that presentation, it’s really focused on Zoom related connections and communities that I’ve become a part of. You know, during COVID that I wasn’t pre COVID, so I have talked for 24 minutes pretty much non-stop, can’t believe I did it and I only, I think, sipped water twice. I don’t know, maybe I should dispense with scripts altogether? Let me know what you think. How does this compare to my scripted ones? So thank you for being a part of this Glass Half Full ride. I hope you continue listening. I’m working on some very interesting episodes that several of them will happen before the end of the year and some won’t reach completion until early next year.

But, you know, keep tuning in and take care of yourself and celebrate!

October is Breast Cancer Awareness Month. Meet Susan Jeremy — Comic, Actress, Playwright, and Teacher — and breast cancer survivor.

She’s also an old friend from my college days. We reminisce about way back when…as well as hear about Susan’s unfortunate experience at a New York medical clinic where she was told, “You’re over 40, it’s a cyst. Take aspirin.” The tumor grew.

Susan’s diagnosis and treatment led her to make life changes. She became one of the 48 teachers in Manhattan working directly with medically-challenged students; 80% of them undergoing chemotherapy.

Eventually, she wrote and starred in her one-woman show, Teacher in the House. While her performance schedule is impacted due to COVID, you can enjoy her dancing and character sketches on Tik Tok.

For additional podcast episodes with breast cancer survivors, visit this page.

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.

Dalia Kinsey, RD, LD, SNS, chose to be a dietician because she wanted to help people prevent chronic disease; this was before receiving a diagnosis of Graves Disease, an autoimmune disorder that causes an overactive thyroid.

Dalia Kinsey

In this first of a two-part interview, Dalia shares anecdotes of dealing with a chronic health condition in another country where certain modern conveniences, like continuous running water, are lacking.

Her lived experience and academic training have shown her that many people make the false correlation between weight and health. Dalia believes,

Health is not just determined by one or two factors. Eating is such a social thing and feeling connected to others and happy and not judging yourself when you’re eating, I think also plays a major part as to how your body relates to those calories. And it affects digestion, how you feel about your food, that I think it’s important not to have any strict food rules, but the basics that we all know from our mom or grandma from whenever is that you should eat vegetables and you should eat fruit and you should really, really eat vegetables.

As a healthcare practitioner Dalia views her role is “to be a facilitator and there for whatever the patient wants, not to be like this parental figure telling anyone what to do because you know better.”

Here’s part 2 of our conversation.

If you want to hear another healthcare professional speak about her journey as a physician diagnosed with autoimmune disorders, listen to this previous podcast episode.

Are you feeling stressed out? With all that’s going on in the world — pandemic, civil unrest, job loss, hurricanes, wild fires — it’s difficult to avoid stress.

Laughter therapy, or laughter yoga, might help alleviate some of the stress. It’s free. It offers numerous mental and physical health benefits. And it’s fun.

In the field of psychoneuroimmunology, laughter has been studied and found to lower blood pressure, strengthen cardiovascular function, improve circulation, boost immune function, trigger the release of endorphins, and produce a sense of well-being.

You’ll meet Annie Goglia, a certified Laughter Yoga Leader, who shares her story how laughter transformed her life. You can even join her, virtually, at her Laughter Club.

To delve deeper into your exploration of Laughter Therapy, check out the Comedy Cures Foundation and Association for Applied & Therapeutic Humor.

The University of San Francisco Osher Center for Integrative Medicine offers classes in Laughter Yoga as well as the Founder of Laughter Yoga, Dr. Madan Kataria.

For more laughs, check out these podcast episodes: Life After Cancer, Laughter is the Best Medicine; and Put a Pink Ribbon on this Actress

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 we can all use a little more laughter are you agreeing i mean this is a tough time and that’s coming from a normally optimistic person me most of you listening likely have some type of chronic health condition that presents challenges for you with every day living now if you are more vulnerable like me with respiratory issues or maybe a compromised immune system you’re on high alert during this pandemic even quote unquote healthy people are at risk and maybe you’ve also lost your job or your work hours have been cut or like me your spouse has suffered a job loss which impacts your household and then we’ve got a lot of civil unrest and maybe you’re in the path of a hurricane or the air quality is super unhealthy because you live near wildfires like myself jesus episode is about laughter what am i doing going on and on like this the fact of the matter is we are all stressed out and if you’re not stressed out what in the world is wrong with you okay so we’re in agreement right you’ve gotten stress i’ve got stress people across this whole world are all stressed granted some have a bit more stress than others i can’t even imagine what it’s like to have to evacuate my home because of fires on its trail it’s a totally different enough to crack and i don’t think laughter therapy is the best antidote not yet ironically and here’s how i bring us back to the topic two years ago i was scheduled to interview a nurse about laughter yoga she teaches laughter yoga and meditation at the university of san francisco’s school of medicine

the day before our scheduled interview she sent me an email message that she needed to cancel because her cabin in lake county california was under evacuation orders for the fires the good news is that she’s fine i went to one of her laughter yoga sessions earlier this year pre-coded my intention was to return to her class again and reschedule the interview but that didn’t happen but i do have a guest and she’s in fact the very first person i experienced laughter yoga with

there’s a field of research about after therapy this type of research lies within psych neuro immunology which is the study of the interaction between psychological processes and the nervous and immune systems of the human body i don’t know when this term psych neuro immunology was coined but the scientific research has found laughter to be really good medicine some of the health benefits include lowering blood pressure strengthening cardiovascular functions reducing stress hormones and improving circulation increasing muscle flexion oxygenating the body by boosting the respiratory system immune function by raising levels of infection fighting t cells disease fighting proteins called gamma interferon and b cells which produce disease-destroying antibodies triggering the release of endorphins the body’s natural painkillers and producing a general sense of well-being pretty convincing results don’t you think so with all of this stress upon us maybe we should try working in a little healthy so what is laughter yoga it’s a fairly recent phenomenon an indian physician madame kettarian developed an exercise routine he calls laughter yoga it’s a combination of laughter and yoga breathing laughter yoga practitioners do not use asana or yoga poses as part of the routine so if you can’t do a great down dog don’t worry dr catorius started the first laughter club in 1995 and today there are more than 20 000 free social laughter clubs throughout 110 countries

my introduction on laughter yoga was several years ago i probably had read about laughter yoga and then i did a little research to find a local practitioner and that’s how i found annie golia my guest for this podcast episode i was facilitating a monthly support group for adults with neuromuscular disease we would meet at the kaiser permanente hospital in oakland california and annie happened to live nearby in oakland and she graciously joined us one sunday and led us through several laughter exercises it was not until many years later when i attended my next laughter yoga class at ucsf and during coven so far i’ve attended a couple of virtual laughter yoga sessions so anyhow here’s annie my first question and you know i don’t even know if i asked you this years ago when you came to the support group but how and when did you discover laughter yoga ah well i think it was 2005 or 2004 and i was living in the boston area and i i was very i was pretty shy when i was younger and as i got older i realized humor and laughter were things that helped me connect with people and get over that shyness and i i became quite the laugher and people with friends would tell me you should become a professional laugher or i knew you were in the room because i could hear you from from across the room so when so i thought well that’s funny professional laughter there’s no such thing and then i found out about laughter yoga some friend told me like there’s this thing that adults do and they get together and laugh together and i’m like that sounds spectacular to me so i joined a group and near where i live near boston and i loved it and then i moved here about a year later and i found a training and that’s and then i took a training with dr qatar it was the founder of laughter yoga and now i and then i also started to train other people to lead after yoga so that was almost 14 years ago is he in india or is he located in the united states he is in india he was then and originally he was in mumbai but now i believe he’s in the kind of silicon valley area of india and do you actually travel to india to city with him no no uh he does do trainings there but i at that time he would travel to the u.s to do trainings so it was near la and sierra madre oh okay and so previous to this when you said you were shy have you you know in high school or college done any kind of acting or improv or any of that not so much then uh i did i i think it was later on i got interested in when i was in my 30s i started to do storytelling and that’s before and after yoga yeah yeah and that really got me out of my shell a lot and then i started to take some improvisational classes too movement and storytelling improv so yeah it all kind of comes together in life together it’s very improvisational and playful and creative and brings all my fun stuff together so may ask what did you study in in college i was an english major

not literature did you teach did you go and teach after that or i eventually i got a master’s in arts and teaching and i taught for less than a year and that was the end of that oh my god did you hate it it was very very challenging and it was really hard to find a decent job in teaching at that particular time especially in english and so yeah it just did i wasn’t suited to it so then i ended up doing a lot of human service jobs for many years once you started uh you know working on laughter on your own and then discovering laughter yoga how did it change your life i think it’s it’s it’s kind of sneaky it kind of sneaks up on you you practice it the more you laugh the more you laugh we like to say and there’s a lot of things in left yoga that are intentionally meant to help you bring laughter into your everyday life we call them values-based exercises so for instance there’s something called argument for argument and forgiveness laughter so we argue with laughter and then we forgive with laughter and that’s a great way to just remember when you’re having a disagreement with somebody in your life like is it more important for me to be right or is it more important to have a nice relationship with this person i think things like that and then also just just remembering that laughter is a possibility when things are stressful especially minor things for instance uh one time i was carrying a plate of spaghetti with sauce on it down to the dining rooms in the kitchen and i tripped and of course i was in a hurry i tripped and i ended up all over this bookcase bigness and and i was really bummed out because i thought oh my god this is going to take so long to clean up and like first i was really pissed and then i’m like but i could laugh and it was much more fun and so i did and it made cleaning it up much more enjoyable and then one of my housemates was there and that person also started to laugh when he saw what was going on and it just like made both of our days more fun because of laughter yeah and and other things like like one time i was taking my bike out of the garage and i was going backwards with my bike and i started to fall on my back and before i hit the ground i started to laugh and because of that i i really didn’t hurt myself i think it just relaxed me and wow yeah so it’s really useful that’s this laughter thing yeah i mean over the years i have read you know different articles and i know there’s even you know peer reviewed scientific research about the health benefits of laughter yoga or laughter therapy which i’m thinking is kind of synonymous isn’t it laughter therapy laughter yoga pretty much yeah i mean it can be just like kind of entertaining and fun but there is a therapeutic aspect of it absolutely when when did you become a practitioner how many years have you been you know leading people i started leading into in january of 2007. okay mars you’ve been doing it a number of years and have you met people with different types of health conditions where they were seeking it out as a therapeutic you know modality yes um well certainly people have come who’ve been feeling i don’t know about depressed but down you know feeling down and needing needing something to cheer them up i mean i think people come to laughter yoga because they feel like they need more laughter in their lives and so and some of those people may have some mental health issues and they’re also you know people just want to be healthier they want some mode a way of becoming healthier and relieving stress i think really mean stress is a big reason people come to laughter yoga and certainly there’s plenty of stress to go around right now and stress causes inflammation in the body it causes the body a lot of wear and tear and it can cause heart disease cancer dementia so all of those things you know it’s a great preventative and if you have those things it’s certainly useful to help heal so i’ve done it a lot for elders who have all kinds of health issues i’ve done it for people who are on dialysis there was a study that we did i was part of a study that actually went in and did laughter yoga for people while they were on dialysis to see if that would help them and actually you could see their blood pressure on the machine and you could sometimes see it like going down wow interesting now so they were hooked up to the machine yeah and experiencing a class a section of laughter yoga yeah yeah that’s amazing

so you also do it in corporate settings right i have a little bit yeah and so is that are you brought into like hr and is it like some section of the staff and often it’s a manager who’s like i want to bring some stress relief or fun for the staff a way for them to cope with the stress of the job and so i try to always customize it for people so i find out what are these people’s stressors or challenges and also what do these people need to celebrate because life yoga is just about relieving stress it’s all also about learning to celebrate what we need you know and not just the big things in life but so important i think what one of the things i’ve learned from left yoga is celebrating the little things in life so we can say yay very good very good yay over like you know i i got up and took a shower this morning i mean i’m like it doesn’t have to be i’m still breathing it’s all relative though you know it is especially now in the pandemic exactly so so are there are there in your experience are there certain types of people that you find are more receptive i think there’s some people who’ve just decided for themselves i’m too serious i need more laughter in my life or i’ve got some issue and i think laughter would be good for me so there’s those people and then there’s the people sort of more like me who are like oh my god i want a place that i could just laugh like crazy and people don’t think i’m crazy you know um so i think those are the two biggest groups i think that come to us but and then there’s other people too but i think those are probably and is there any kind of generalization you can make about people that just don’t uh you know it’s just not they’re not their thing well i mean truth be told i i’m so i think you were the first experience of laughter yoga for me and then over the years i attended a couple of other sessions at ucsf yeah in person and then since the pandemic i’ve done a couple online classes and i don’t know how much you know about me but i embrace all modes of non-invasive healing modalities and for some reason it’s i’m i have not it just it doesn’t i mean i don’t have an adverse reaction yeah but i’m just not fluid with it yeah i think it depends totally on somebody’s openness and also on their personality i think some people just have a really hard time letting go and getting silly because i think silliness is really and feeling safe enough in the group is really really really important so i think that some people just you know i think it’s as as when we’re growing up we’re told when we’re told to grow up when we’re little what does that mean it means get serious get responsible it doesn’t mean have fun have a good life you know it means so we learn that being an adult means means getting serious and being responsible and those are not bad things to be but it kind of leaves out a whole other part of life so i think laughter local calls on us to have a more childlike approach and to see that to open up that side of ourselves to be silly to be playful and for some people that’s really hard i’m not saying you are like that but for a lot of people that is very challenging and they’re just like kind of frees up and they they’re like oh this is too silly for me or uh it’s too embarrassing um or it feels fake that’s the other thing i hear sometimes yeah i mean i’m you know i’m i’m open to still you know because every once in a while i come back and i’ve often wanted to do a podcast on it you know what works for me isn’t going to work for someone else and vice versa i mean they’re just um many different paths to hopefully the same goal of just leading a better life yeah but i tell people if they feel like that kind of sense of embarrassment or or inhibition to think about it as an exercise i’m doing an exercise for my health and hopefully elevating my mood as well because we still get that we still get the benefit out of it even if it’s intentional laughter even if we’re not laughing spontaneously so a lot of times i don’t feel like exercising i have to push myself to exercise and so this is a form of exercise and so i encourage people to take that bring that kind of experimental or decision of deciding to laugh because i know it’s good for my health and then often almost always people end up spontaneously laughing in the group there’s this sense of safety and sense of connection and and they say that actually most people laugh not because of humor not because of jokes but because they’re with a group of people they feel safe with and they’re just they’re just really kind of laughing just because they’re together that’s interesting so in the in the laughter clubs that you’ve been affiliated with is there a sense of community that’s fostered yes i i mean i i can’t speak for all laughter groups but i i do feel like the woman who ran the group that i went to in boston really worked on that and had regular people and and really tried to get people to share and connect with each other and i really tried to nurture that in my group so there’s regulars and then there’s new people we try to welcome the new people and that’s fine and but i do try to make sure people feel like they get to connect in a real way even if it’s um even if they’re there for the first time that they get to have this connection with a group that’s safe and enjoyable that might be the key for me you know is that in you know it did feel a bit like artifice but had there been more time where i actually got to know the people um and and the idea of like building that safety i mean because it is you know one it isn’t opening up to laugh freely and you know kind of that whole full-body jewelry experience is certainly yeah kind of intimate yeah it is oh absolutely it is and i tell people like to try to channel their their their childlike self that because when we’re kids we generally most kids don’t say oh i have to talk to this person to get to know them first before i want to play with them

i have to know what work they do or where they live or whatever they just like let’s play let’s play and so i try to like encourage that like getting to know people on a different level than the intellectual one or the the verbal one it’s getting to know people on a very human level that’s that’s just like we’re two human beings together we can play together without really knowing each other on that verbal level so are you are you able to achieve that online now have you been doing that it’s more challenging somewhat more challenging but i’m amazed that we’re able to it does work for a lot of people and it we’re still able to do it yeah so i’m very grateful for that for everybody some people in my group don’t come to the zoom and then some people never come before and hop down and and love it on zoom so you know i can’t say you know it obviously is not for everybody but i’d say it works for a lot of people i mean everybody should try it you know no harm done no no no i don’t know anybody who’s died from laughing

that’s a good testimonial

and most people come out of it saying they feel both more relaxed and more energized yeah nice combination yeah no i definitely did feel more energized i mean because you are really exercising your lungs and the one i did online we were moving around a little you know so yeah it is uh oh yeah a lot of movement moving clapping um breathing a lot of yogic breathing and of course laughter and i also do uh when we have a we so we do these playful after exercises we get people to connect and laugh with each other and we also do um some warm-ups before that some physical warm-ups and towards the end we do a time when we just laugh for a minute or two because you really get more benefit out of a more extended lab more health benefit helps with the blood pressure helps with the immune system which we really need right now right yeah

and as a natural pain reliever which is lovely and then uh at the towards the end i do a guided or eliza or i do a guided relaxation because it’s in the evening and we want to leave people in a peaceful place oh yeah that makes sense right you’re unwinding and gonna go to sleep soon so you want to come down a bit

great well thank you so much oh you’re very welcome my pleasure yeah i feel like i haven’t bumped into you somewhere since kaiser yeah i think we did but i don’t remember where that’s another way i use laughter is because it helps my dog my memory when i forget something i laugh and it’s amazing because it kind of it cuts through the brain freeze and i can think better and i almost always remember it what it was i was forgot wow i recommend trying them oh man can you jar that that’d be good wouldn’t it yes you’d get an arp magazine you know you’d make a fortune

hey guess what you too can experience laughter yoga with annie she has a groupon meetup i’ve provided the link in the podcast notes on the glasses website and if you’d enjoyed if you’ve enjoyed what you’ve heard in this episode i invite you to check out the other links on the glass apple website that are related to laughter therapy there’s an organization called comedy cures foundation that provides therapy therapeutic comedy programs for children and adults living with illness trauma depression and disabilities there’s the association for applied and therapeutic humor which is was founded by a registered nurse in the sev in the 80s 1980s meta organization provides and disseminates information about therapeutic humor and there are also links to the ucsf laughter yoga program and dr kitarya’s website so take care of yourself as best you can and when you’re ready consider exploring how some intentional laughter can help ease your stress 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.online

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.

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.