Leslie Krongold, Podcast Host & Blogger at Glass Half Full

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Saul Marquez:
Welcome back to the Outcomes Rocket, Saul Marquez is here again, and today I have the privilege of hosting Leslie Krongold to the podcast. She is a patient advocate diagnosed with myotonic dystrophy in 1998. She soon became a support group facilitator. Over twenty two years, she launched support groups throughout the United States, Canada and Europe. And in twenty sixteen she started the Glass Half Full podcast with a focus on positive living for those with chronic health conditions and or disabilities. And she just has such a tremendous person and an educator by training. She’s got her Ed.D, but she’s also an educator for patients and physicians and showing them the patient’s perspective of chronic conditions. And so such a pleasure to have you here today with us to tell your story. Leslie.

Leslie Krongold:
Thank you very much. So glad to be here.

Saul Marquez:
Yeah. So you’re doing so many great things. You have your podcast, which you’ve done over 90 interviews with different people, and you’ve got your website and all the work that you’re doing for facilitation of these workshops for patients. What inspires your work?

Leslie Krongold:
Well, you know, I was diagnosed with this condition 20 some years ago, and it was certainly a life changing experience. And I had been familiar with neuromuscular disease, not that it was in my family. I wasn’t aware of it. It’s a hereditary condition, but I didn’t know about it until my mid thirties when I was diagnosed. But I had volunteered with the Muscular Dystrophy Association when I was growing up in Florida just because they grew up watching Jerry Lewis telethon. And it was just one of those things. It was part of life in the 70s. And I, I was a counselor and an MDA camp and I met kids and adults with different types of neuromuscular disease. So when I was diagnosed 15, 20 years later and I was living out here in California, I joined a support group. And within a few months of joining that support group, the staff member there asked if I wanted to facilitate the group. So all of that was just, you know, it happened without seemingly any kind of control on my part. I was thrown into this. My background was in filmmaking. I went to film school. I was not a social worker. And here I was learning about my condition and learning about other people’s conditions because there are more than 50 different types of neuromuscular disease. And they were coming to this support group and they were in varying stages of quote unquote progression disability. And they represented a cross-section of humanity, of education, of socioeconomic status, cultural associations. It was an amazing experience. And yeah, I mean, I just kept learning and growing and loving these people who I was getting to know. And I think that was the early formation of what inspired me to switch gears to the work I had been doing professionally. I was a multimedia producer and instructions, etc. Then I started to work in that capacity when it was working in health care. So I was just drawn to it because of what was going on for me with my own health condition, because of what was happening in the support group, because I was learning about symptoms that I had no experience with.

Leslie Krongold:
I mean, I had people with ALS come into the group and I was you know, it’s a very progressive condition and they have to deal with so much. So I had that. And then professionally, I was exploring other areas of chronic illness as educator and earning a living. So all of that sort of has been this major inspiration that people need to grow a support program for a patient advocacy organization as well as go back to school. And my dissertation for my doctorate was in the area of self of chronic health conditions. And I worked with the Multiple Sclerosis Society to do my research. So all of those things to really inspire me and sort of where I’m going on this trajectory. Four years ago, it was the podcast. Different doors have been opening as I’m doing the podcast and writing blogs and sitting on different panels for conferences. So that’s the short answer.

Saul Marquez:
I love it now and I love the name the glass half full. When you get the news that you have a chronic condition, it’s never easy and it’s hard to stay positive. So I love that you went with this name. Can you tell me a little bit about the biggest way you feel that you’re adding value to patients and the health care community?

Leslie Krongold:
Well, I feel like I have a mission or a message, and I could probably you know, it could be like the elevator 30 second elevator pitch. But then pitch comes out of this container of me is a woman in her 50s, white, educated, says the container. But there are a lot of different people with that same message. And I love finding those people in different containers, different voices, different backgrounds, different paths that they have essentially the same message. And then the positive message that you’ve been dealt this you know, you’ve been through. When are you going to do to make the lemonade? You know, and and I feel I mean, I’d be lying if I said I’m always glad for a moment. Yeah, no, but I haven’t been able to develop the tools and resilience to handle the progression of my condition and to come from a place of gratitude for what I do have. And I have a passion. I’m always looking forward to different things, different projects, different ideas. So in a nutshell, I think by sharing my message and finding other people, that message resonates with and they’re doing amazing things in spite of having a debilitating condition, they’re still living a quality filled life. I believe that’s the impact. So it’s it’s just like a fog to a tool chest where people can tune in and hopefully find a tool that works for them.

Saul Marquez:
All of it. That’s so great. That’s such a great way to think of it. You know, it’s a tool chest. And if you or somebody in your life has a chronic condition and you know, you’re thinking, man, I wonder if Leslie did an episode, this is a good chance to check her out so that you are Owles glass half full on line. And we’ll leave a link for you to check that out and just see if you could find something on there. You might be surprised with what you find. She’s done over 90 of these. And so what would you say is an example of maybe some of the feedback Right. folks, before we got on line here, Leslie was sharing some of her successes and she’s pretty humble. So I’m going to pull these out of her. Give me some examples of feedback that you’ve gotten and how you believe you’re improving outcomes and making life better for people.

Leslie Krongold:
Well, I. I get comments on the Facebook page and on the podcast notes on the website. People can comment and every once in an while email here and there. People, strangers, you know, who talk about loving the podcast, they’re regular listeners. Or they’ll respond to one specific episode that may be touched upon the condition they have. And all of that is so cool, or going to a conference and being approached by a total stranger. And they tell you to sit here feeling, oh, my God, I love that podcast. So so that’s that’s wonderful and funny. I would say that is something that was totally unanticipated, is hearing from different health care professionals and researchers who are regular listeners. And that’s a real vote of validation. I recently received a message and an invitation from someone at University of Utah who she’s a psychotherapist and clinician there. And she said she refers people to the podcast and they’ve invited me to be a keynote speaker at their annual meeting in October. So, I mean, I was looking for that. That. Materialize. And that was incredibly it motivates me to do and keep going because I don’t make a living. You give five cats, maybe some time it will generate revenue. But right now it’s really building listener’s hearing that the content makes a difference in people’s lives. So, yeah, that that’s been some of the great feedback.

Saul Marquez:
Now, that’s great. And and so as you think about your journey, the people you’ve touched, the stories that you’ve been able to share with your audience, what would you say has been maybe one of the biggest setbacks or challenges in doing what you’re doing? And what was a key learning that came from that?

Leslie Krongold:
Well, I like to think that I’m constantly learning. I learn from setbacks as well as positive experiences because I’m all about lifelong learning. I haven’t had a major setback in the context of the four years of doing the podcast. I mean, I have I think I’ve applied for a few different opportunities that I didn’t get yet for me. One door closes and a few weeks later, after I totally forgot about that, set back a new door opens So I don’t have any specific incident to say about it. So back in May, my computer died and and so I had a setback. That’s a setback. I didn’t even realize it had been seven years ago. And so, you know, I once I realized no, I think seven years ago. So I ordered a new one. And because of all the shipping and all the delays. Because of COVID.

Saul Marquez:
Oh, yeah.

Leslie Krongold:
It took a month to get a month to get a computer. It was coming from Japan, an Apple, an iMac desktop.

Saul Marquez:
And you do everything on your computer. So you what did you do?

Leslie Krongold:
Well, I. I have a laptop.

Saul Marquez:
OK, so you knocked stuff out on your laptop?

Leslie Krongold:
I didn’t get any podcasts because I know the laptop, the CP powers is not that that great for me as my desktop. So I wrote some blog posts, but I didn’t publish an episode for about a month. So I mean, no, that was a step back. And I think I would make well…

Saul Marquez:
When a lot of what you do is on your computer and then it goes away, I mean, hey, when the Internet goes out, it’s like aaa… The Internet was. So, folks, what would you do if your Internet went out for a month? I think that would be a setback,

Leslie Krongold:
Especially now where we’re connecting, via zoom.

Saul Marquez:
And it is the virtual normal.

Leslie Krongold:
And I love it. I hear all sorts of stories about Zoom fatigue. And I don’t know, I as someone who is probably healthier staying home for the most part, that’s a good point. Oh, yeah. And people with chronic illness, I’ve talked to so many people that say they feel healthier than they have been here.

Saul Marquez:
Amazing. And you’re not stressed, right, about having to go here or there?

Leslie Krongold:
No. I mean, I have to say, you know, thank God I live in a house. I’m able to afford money to afford food to be delivered. I mean, I have some privileges that not putting with a chronic health condition might have. But, yeah, I’m OK. I’m coping. Coping with COVID.

Saul Marquez:
That’s good. That’s good. So what are you most excited about today, Leslie?

Leslie Krongold:
I, I don’t know when the whole patient voice in health care started. I don’t know if there’s a demarcation of the birth of the patient voice, but I would say that I’ve seen it steadily growing over the years and I find that very exciting. I mean, winning a trip to the health conference was great and getting to meet and interact with a lot of people in health care that I never would have had an opportunity before was wonderful. I’m on a patient advisory committee for Kaiser Kaiser Health Care in their life. Planning and what we’re doing there is really exciting for me. I mean, for lack of a better term, kind of peripherally involved in the death positive movement. And I know that if you’re not familiar with that term, it’s probably scary, but it’s all about planning for end of life. And it’s something I’ve shared in support groups. But it’s a growing movement. And now I’m participating on a panel with physicians and other health care professionals as well as other patients. So that’s exciting. And then in terms of I’m seeing and dealing with this illness for twenty two years, I’m seeing a real shift with physicians and other health care professionals sort of expanding their horizons and bringing in a lot of non Western healing modalities into their traditional practice.

And I for years in the in-person support group, we would have a physical therapist come in and talk to us. And she was someone who was skilled with working with people, neuromuscular disease, ovary, bank balance and core strength and same old, same old every year. I mean, but she’s a good speaker and people love her. And the last few times she came to the in-person group, she started talking about meditation and mindfulness and bringing that component into her work and then seeing it in not just to my own experience, but I go to different medical seminars or sessions at UCSF School of Medicine.

They put it on for the public and they’ll have a series about a particular topic. I think pain management was one over six weeks and then different physicians who speak on it. And of the six, every one of them mentioned yoga, tity, meditation, in addition to some of your more traditional pharmaceutical approaches to pain management. And I get I’m very excited about that, Leslie.

Yeah, I’m a big fan of wellness and meditation and breathing and music to feeling better. Actually, a couple weeks ago, I had an interview with a lady. Her name is Jamie Pabst and she is the founder of Spirit Tune. I don’t know if you’ve heard of that one, Leslie. Spirit tune.

No, I didn’t have.

Yeah. So Spirit tune, basically, it’s a music app and you could do a free trial and you listen to it, you tap on how you feel and then you tap on how you want to feel and it uses the music to get you there. Oh, I love it. It’s so great. And so it’s just things like that right through the use of music and breathing. I’m all about that too. So I think it’s great that you’ve gotten into that. And overall, you’re such a positive person and you’re able to just be truthful to Right. like, hey, I’m not glass half full all the time. And I think that’s very, very key. And so, folks, I wanted to get Leslie on the podcast today so she can share her story and share her great work. I want to encourage all of you to to check her out and check out her podcast and her blog and all the great work that she’s doing. She’s covered it. She’s covered a lot of chronic conditions on her podcast. So there’s nothing like hearing a personal story. And she does that very well with a lot of people, as she said, that are in different containers. But they have stories to share. And so we’re here at the end. Leslie, and a love for you to share a closing thought with the listeners and the best place they could reach out to you if they had any questions or check out your work.

Well, certainly going to the website, glass half full got online and there is a link to send me a message or if you wanted to just write to me lesslie At Home Online. And I have interviewed a number of physicians on different topics. And I interviewed one physician who actually has had a harrowing journey with a chronic health autoimmune disorder. And she wrote a book and I’m very intrigued by memoirs by physicians who at some point in their career, they have to deal with their own health crisis because it inevitably changes a person with your. A scientist or a postal worker? It’s going to shift your perspective on life. So if I have a closing thought, I think I’m becoming I’m realizing that what I’m doing, the people I’m interviewing on the podcast, it’s not just an audience for people with chronic health conditions. It’s really any human who is interested in increasing their quality of life, perhaps their longevity. They believe in health and wellness. And we’re all going to end up dealing with some sort of health issue, whether it’s just something that happens in old age or if it’s a member of our family. So I welcome people to there’s a surge there and you can search for gratitude income. You want to explore the you know, the attributes or concept of gratitude. There are a number of different services where people have talked about gratitude, people who have had really intense health journeys as well as practitioners. I interviewed a clinical nurse who is fairly healthy, but she spoke about mindfulness as a disease management strategy, which was a very interesting interview where she talks about gratitude.

That’s a great insight, Leslie, and I’m glad you mentioned that. So not just for chronic conditions, it’s for everybody that wants to live a better life. And I think that’s a great call. And we appreciate your invitation to do that. Leslie, I’m certainly going to take you up on it. I’m going to be listening to a couple episodes and who knows, maybe I’ll binge listen to all ninety five of them.

But, you know, especially so during this time, there is a pandemic, I think health and wellness and anxiety and resilience, all of these terms that we’re hearing about in mainstream media, these are a lot of things that people with chronic health conditions have been exploring for years.

And, you know, hey, we all want to share with you.

Love it. What a great, great close there, Leslie. And I just want to say thank you again for joining us. I really appreciate your time. And just congrats on all the great work that you’re doing to inspire people to be grateful and and live fulfilled lives. Thank you very much for the opportunity.

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