Glass Half Full with Leslie Krongold, Ed.D.

Category: Mental Health

  • Health Benefits with a Tai Chi Practice

    A seated Tai Chi practice can have both physical and emotional health benefits.

    Interview with Ralph Somack, PhD — Tai Chi Instructor

    Tai Chi instructor, Ralph Somack, has taught tai chi to seniors, people with dementia, stroke survivors, people using wheelchairs and this week begins to teach a seated tai class to people who are blind or visually impaired. Somack, an octogenarian, continues to take on new challenges of modifying tai practices such as qigong, bagua, and Xing Yi for those who want to alleviate stress. In addition, Somack has seen his students benefit from increased self-esteem, ambidexterity, an Increased awareness of themselves as well as others, and a sense of where they are in time and space. To register for Somack’s online classes sponsored by BORP, visit this webpage for the Tuesday 10 am Pacific Seated Tai Chi class or here for the new Tai Chi class for Blind and Visually Impaired Participants on Wednesdaya at 10:30 am Pacific. You can watch videos of Somack’s classes. Here is an earlier Glass Half Full podcast episode about qigong and a short video about qigong.

  • Uncover the stronger part of yourself…

    Uncover the stronger part of yourself…

    Liz Ann Kurdrna, Pilates instructor, feels like her emotional recovery from a rock climbing injury is ongoing yet “knowing that I have to show up for someone else…by teaching…it helps. It helps you uncover the stronger part of yourself.”

    In this podcast episode, Liz Ann talks about her lifelong love of rock climbing as well as her participation in other outdoor activities such as swimming, snow skiing, and cycling. In Montana, where she’s lived for the past 20+ years, she teaches online and in-person Pilates. Liz Ann has competed in local Triathlon events with the Challenged Athletes Foundation.

    In this video Liz Ann demonstrates a few Pilates Breathwork exercises.

    To learn more about Liz Ann’s online classes, check her website. You can register for her Seated Pilates class sponsored by BORP.

  • “Don’t worry, be happy! It could be worse. It is what it is.” by Toxic Positivity

    “Don’t worry, be happy! It could be worse. It is what it is.” by Toxic Positivity

    I remember years ago when I had a Toyota there was a dealership I’d go to regularly for oil changes and other car repair. You know how you drive into a big open space, like a warehouse? Well, there was a huge banner hanging inside that said SMILE. And maybe it had a smiley face. It kind of pissed me off; like it was a command – come here and spend more money than you need to and dammit, you better have a big fat smile on your face as you wait an inordinate amount of time to be waited on by surly people.

    And maybe Bobby McFerrin’s song was popular around that time or isn’t that song always in vogue – DON’T WORRY, BE HAPPY! I’ve liked the song; hey, it got everyone to know who Bobby McFerrin is but people in San Francisco knew of him and his leadership in a 24-hour acapella song event at Grace Cathedral on New Year’s Eve. That was something to be happy about.

    But I digress. No one wants to be forced to smile or be happy.

    A month or so ago I was on a Zoom chat with one of my new Mendocino friends. We’ve bonded over having chronic health conditions. Hopefully you’ll meet her soon. I can’t recall the context, but she used the term toxic positivity. I’d never heard that term before. But I remember it perfectly described what we were talking about.

    And then I started seeing the term in other places. You know how that is, something is unearthed and then all of a sudden, it’s everywhere!

    So, skip forward to a week or so ago. I was telling someone about a virtual support group I had facilitated. We were sharing coping tools for the holidays which can often be so bittersweet. Especially when you have a chronic health condition and you’re around friends and/or family that just don’t get your condition and challenges.

    It was a good meeting. Several of the people in this group have never attended a support group meeting…and are a little shy about sharing. But it was going well until this one gentleman started saying something like how he didn’t understand why people weren’t happy or joyful. He went on to share how his family and friends help him and he’s just jolly jolly jolly. He, I seem to recall, said something to the effect of DON’T BE NEGATIVE, I don’t like all of this negativity.

    In my 23+ years of facilitating support groups I have vast experience of dealing with negative people bringing a vibe down but rarely had I experienced this kind of behavior.

    It wasn’t a downer meeting…just people honestly sharing what seems to be a difficult time for many people. Like, you don’t have to have a debilitating progressive neuromuscular disease to understand how the holidays are bittersweet for many.

    So, as I said, I was sharing this experience with someone in the patient support community, and he said, “you know I think this is an example of toxic positivity.”

    According to the Mental Health Association in Delaware:

    With toxic positivity, people’s negative emotions and experiences are downplayed and disregarded. Instead, only positive feelings and experiences are encouraged.

    Apparently, this has become more of an issue during the pandemic.

    The website goes on to say:

    Toxic positivity statements can be directed towards others, stated by others, and aimed towards oneself. Some signs of toxic positivity statements may be dismissing emotions, minimizing someone’s experience, giving one’s perspective instead of validating someone’s emotions, shaming someone for expressing frustration, and brushing things off. Some examples include:

    • “Just get on with it.”
    • “It could be worse.”
    • “It is what it is.”
    • “Don’t worry, be happy!”
    • “Positive vibes only!”

    Did you hear that one Mr. Bobby McFerrin?

    Okay, I am guilty of using the statement “It is what it is.” But in defense, I’ve used this for minor setbacks like when our cat Abner knocked over our tree and some precious ornaments broke. I was mad for a little bit but my partner was sad and cried. I said It is what it is.

    A more compassionate response, as I’ve learned, would have been:

    • “I see you, and I’m here for you.”
    • “Describe what you’re feeling, I’m listening.”
    • “This is really hard, I’m thinking of you.”
    • “Failure is a part of growth and success.”
    • “I see that you’re stressed, is there anything I can do?”

    But what about the support group? How do I handle the perpetrator of the toxic positivity when it’s not me?

    I think I mentioned to Mr. Positive in Your Face how I’m a big proponent of positivity – after all, I have a podcast called Glass Half Full – but it’s also very common to have a difficult time with the holidays. I cut him off too…because…wouldn’t you know, Mr. Positive attempted to dominate the conversation. I wonder if he listens to my podcast. Hmmm.

    In addition to the website for the Mental Health Association in Delaware another high ranked Google search result was a podcast on KQED. The episode focuses on teachers who have had a particularly rough time during the pandemic – having to change curriculum for remote learning, having a hybrid setup with in-person teaching on one day and remote the next day as well as having real fears of dying and/or separation from their child if exposed.

    In some communities’ teachers were force-fed positive phrases and instructed to do breathing exercises. One woman talks about being shown a TED talk with psychologist Kelly McGonigal talking about making stress your friend. The podcast narrator defines toxic positivity as focusing on the positive and ignoring the negative. This mindset has caused a lot of teachers to feel guilty, stressed, and overwhelmed.

    Ironically, McGonigal is one of the psychologists often featured on one of my favorite websites – the Greater Good Science Center at UC-Berkeley. I decided to see what articles The Center had about toxic positivity. The search results displayed one with the entire phrase; there were many results for “toxic” or “positivity.” The one result was a comment from someone in response to a “Finding Silver Linings” practice. The truncated comment included, “I do wonder how this process starts touching on the territory of toxic positivity. When we’re frustrated and discouraged, how can we own the feelings and…”

    So, toxic positivity has not yet merited much attention from the Greater Good Science Center. Interesting.

    I know how hard it is to hear about someone’s suffering. Even if you are compassionate, you might not know what to say. And often there isn’t any magic phrase to ease their discomfort; maybe they just want to be heard, or witnessed?

    But let’s all agree…when we’re hurting there isn’t anyone that can whisper a few words to snap you out of it. DON’T WORRY, BE HAPPY! Wow, if that worked we’d have no need for psychologists, therapists, counselors, alcohol….You get the point.

    I’m still all about tools and resources to help manage difficult physical and emotional issues. But sometimes you need to sit with something and wait and find the right path out.

    So during this holiday time, please be gentle with yourself as well as others. If someone is hurting, ask them if you can help but don’t assume that what works for you will work for them like a magic pill.

  • Transitioning: Mobility Challenges + Nature = Next Chapter

    Transitioning: Mobility Challenges + Nature = Next Chapter

    The Pandemic has brought many changes; for me, it’s ushered in the next chapter of my life. Perhaps the final chapter? With mobility challenges, it was one of two choices: home modifications or move to a new house. I chose the latter. The transition could be bittersweet but I think I’ve gained more than I’ve lost. I am closer to Nature and getting more than my usual Vitamin N dose.

    Shortly after I moved from the East Coast to California in 1989, I had the opportunity to visit Mendocino when I was producing a documentary about women rabbis. Ever since that experience I’ve visited this beautiful coastal town.

    This past May was filled with online accessible movement classes for the May Movement Challenge. Once the month of activity ended, all I did was organize, pack, organize, and pack. The move occured in mid-August and here I am…ready to continue podcasting.

  • Starting a Contemplative Practice

    Starting a Contemplative Practice

    A contemplative practice includes meditation, prayer, mindfulness, yoga, tai chi or qigong, journaling or anything that helps ground you. Some people use affirmations while others use music to help them ease into a more tranquil state.

    Shameka Andrews (pictured above) shares her meditation experience with individuals and organizations and even at a local farmer’s market in upstate New York. Positive affirmations and mirror work have helped Shameka move through feelings of depression and isolation associated with having a physical disability,

    Gareth Walker talks about finding mindfulness meditation and how it’s helped him cope with Multiple Sclerosis.

    Mary Holt, RN, went through a mindfulness meditation training that changed how she works with patients and families dealing with neurological conditions like muscular dystrophy and Parkinson’s disease.

    Melissa Felsenstein used sound meditation to help her move through depression and anxiety. Here’s a sample of Melissa’s work.

    Molly Lannon Kenny, a yoga therapist and graduate of a program in Christian mysticism, discusses similarities between prayer and meditation.

    Author Toni Bernhard offers her Buddhist perspective on meditation and how it has helped her deal with a chronic illness.

  • Loneliness: How lonely am I and What can I do about it?

    Loneliness: How lonely am I and What can I do about it?

    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.

     

     

     

  • 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.

  • 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.

  • Coping with a Coronavirus: Trees, Yoga, and Essential Oils

    Coping with a Coronavirus: Trees, Yoga, and Essential Oils

    A retired nurse, physical and yoga therapist, and mental health professional offer strategies for coping with uncertainty, anxiety, and all those other emotions caught up in this season of the pandemic.

    Verla Fortier, author of Take Back Your Outside Mindset: Live Longer, Prevent Dementia, and Control Your Chronic Illness, speaks about her experience diagnosed with systemic lupus and the discovery of the healing power of trees.

    Tianna Meriage-Reiter, DPT, C-IAYT, and owner of the Mind-Body Movement Center talks about her new live streaming yoga classes available at her YouTube channel.

    Lee Greenstein-Wein, MSW, shares how specific essential oils can help with situational anxiety or depression. An earlier podcast episode features other healing benefits of essential oils.

  • 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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