Glass Half Full with Leslie Krongold, Ed.D.

Tag: chronic health condition

  • I wanted to help people prevent chronic disease…

    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.

  • When friends or family can’t handle your chronic illness…

    When friends or family can’t handle your chronic illness…

    If you have a physical or mental health condition that has altered the way you look or behave, it may scare people. Have you had friends or family members change how they interact with you or perhaps distance themselves?

    A recent incident with an old friend got me thinking about this topic. In the Glass Half Full Facebook group some have shared their stories. I invite you to share your experiences either in Facebook or in the podcast notes on the Glass Half Full website.

  • Gratitude & Thinking Small

    ‘Tis the season to be thankful, grateful, and appreciative. But how does one get to a place of gratitude if you’re feeling miserable — physically, emotionally, or both? Toni Bernhard, author of How to Be Sick (Second Edition): A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, talks about gratitude as it relates to the Four Sublimes States of Buddhism. 

    A brief introduction to Robert A. Emmons‘, Ph.D. research on gratitude is presented on the physical, psychological, and social benefits to a gratitude practice. Emmons has written a number of books but here is a quick read for those anxious to jump into a gratitude practice, The Little Book of Gratitude: Create a life of happiness and wellbeing by giving thanks.

    Join Leslie with her 30-day gratitude challenge of daily journaling in the Glass Half Full Facebook group.

    Listen to Toni Bernhard in her earlier podcast episode and her articles on Psychology Today’s website.

  • Ready, Set, Go — Start Your Self-Care Challenge

    What exactly is Self-Care? Years ago I used the term, Self-Management Health Behaviors to identify everything I did to enhance my health given that I was diagnosed with a chronic, progressive neuromuscular disease. Some of the behaviors were already my routine like eating a vegetarian diet and practicing yoga. As I learned more about positive health behaviors from a Stanford University program I took at my local hospital, I became more intentional about how I led my life.

    Health Storylines Tool Library

    Somewhere along the way these behaviors became known as Self-Care. You can find Self-Care articles everywhere — in all types of popular magazines, TV commercials — it’s entered popular culture. “As of 2012, about half of all adults—117 million people—had one or more chronic health conditions,” according to the U.S. Government’s Center for Disease Control. That’s tremendous!

    Even though there are so many different types of chronic health conditions, there is a lot of overlap with symptoms. I have a rare disease but when I look at my individual symptoms — muscle pain, dysphagia, fatigue, respiratory weakness — I can learn a lot from more common conditions. And many of these common conditions have known self-care practices that help mitigate the symptoms.

    Based on the Stanford research I became familiar with and my own research, I’ll categorize the self-care practices into these:

    • Diet and Nutrition
    • Physical Activity and Exercise
    • Emotion Regulation
    • Social Support
    • Relaxation
    • Medication

    Once we identify our symptoms, we start to look for ways to alleviate these symptoms. What helps my muscle pain may not help your muscle pain. But, perhaps you’re like me, and you are open to exploring. The key, of course, is to explore self-care practices that have minimal if any negative side-effects. During the experimentation phase you may notice some connections; maybe you have less muscle pain on days you’ve slept at least 8 hours the night before? Or, if you have gastrointestinal issues, maybe your gut feels better when you haven’t eaten spicy foods?

    It’s a lot to manage but once you hit upon some solid patterns and adopt new self-care routines, it can make your life so much better. It sure has for me.

    This trial-and-error process can now be easier with the assistance of a tool. I’m thrilled to introduce an online tool — Health Storylines — to help with your self-care routines. I’ve been chosen to join a team of Self Care Ambassadors who are helping others with chronic health conditions practice self-care. We’ll be doing this together and each month I’ll take a Self Care Challenge with you. Make sure you’re part of our Facebook group so we can track, monitor, and motivate each other.

    Are you ready?

    Here’s what I’d like you to do over the next month:

    1. Register for the Health Storylines Tool. If you have questions about the registration process, send me a message via the Facebook group. You can use the Tool on a desktop computer, smart phone, or tablet. The data you enter will synch on all devices.
    2. Use the Symptom Tracker feature to list all of the symptoms associated with your chronic health condition.
    3. Using the Self-Care Practices categories above, make a list of self-care practices you already have as part of your routine. Maybe you attend a weekly exercise class? How does exercise impact your symptoms?
    4. You’re encouraged to explore the other features of the Tool on your own. But for the next month I’ll focus on symptoms and different self care practices that can help them. The goal is to take small steps toward changing your routines so you’re not overwhelmed and it makes it easier to maintain a steady practice.

    Good luck and see you in the Facebook group!

  • Social Media & Chronic Health Conditions: Patients and Caregivers

    Is using Social Media important to you? Which platform do you use to find support from others with the same chronic health condition? If you’re a caregiver, do you access an online group to connect with other caregivers? Maybe you use social media to help educate or advocate for a particular health condition? This podcast episode explores how a variety of patients, and caregivers, use Facebook, Instagram and other social media platforms to do what they need to do.

    You’ll hear from people with chronic health conditions: Toni Bernhard, best-selling author, and in 2001, initially diagnosed with an acute viral infection—but has yet to recover; Chris Schlecty, a Microsoft software engineer in Seattle, living with limb-girdle muscular dystrophy and Dean Sage, an attorney in San Diego, diagnosed with myotonic dystrophy.

    Also included are caregivers — Loraine Dressler, retired nurse and caregiver for family members and Marla Murasko, Down Syndrome Mom Advocate & Inclusion Influencer.

    In a post on the WEGO Health website, these links provide instructions on how to protect your private information on Facebook:

    Newsweek, Facebook Data: How to Protect Your Private Information

    Trusted Reviews, Facebook Privacy Settings: 18 changes you should make right away

    Mashable, How to See All the Weird Apps That Can See Your Data on Facebook

  • Outliving My Mom

    This photo is about 30 years old. It’s one of the last ones I have with both of us before her cancer diagnosis. In older photos she wore those awful turbans to cover her nearly bald head.

    My mother was diagnosed with myotonic dystrophy (DM) circa 1990 before there was a DNA test available. When my parents told me of this diagnosis they never mentioned it was a genetic condition nor that it was serious. All I knew was that she appeared before medical students at the University of Miami School of Medicine so they could see that one leg calf had less muscle tone than the other. She had more severe health situations than thin calf muscles and had been repeatedly hospitalized.

    In 1990 there was minimal information available about DM. As it turned out, so many of her health issues (gallbladder and GI problems, early cataracts, daily fatigue, respiratory problems, etc.) were related to the disorder. In the last few years there have been scientific studies looking at DM and cancer which suggest that people with DM are twice as likely to have certain cancers. My mother smoked her entire adult life, was often depressed, and drank alcohol daily — creating a fertile environment for the lung and brain cancer which caused her death.

    We have also learned through scientific research that myotonic dystrophy, in addition to being passed on with 50% probability for each offspring, has a component called anticipation. Essentially this means that the severity of the condition increases with each generation and often with each birth. My parents had another daughter nearly two years after I was born but she lived only three days. Now I know this child had the more severe congenital form of DM.

    So tomorrow I turn 56 years old; my mother died 6 weeks before her 56th birthday.

    Searching the Internet, shortly after I was diagnosed in the late ’90s, I discovered a table with data showing the average life span for adult-onset DM being between 48-55. My mother fit that data set.

    So tomorrow is bittersweet. I like to think that all of my self-care and positive attitude has pivoted me beyond the dire expectations. Yet these past few months have proven to be physically and emotionally challenging. My respiratory issues, and subsequent sleep study, show that I need breathing assistance at night. My energy has a marked decline and I worry that I won’t be able to recapture it.

    Birthdays can be difficult for anyone after a certain age but perhaps more so when you have this anticipated early decline…each year represents more loss to come. I’ll be celebrating with a few friends at a karaoke bar and hopefully that will kick my butt into a more glass half full perspective.

  • New Year Resolutions

    New Year’s Resolutions

    We’re a week into the New Year. As I understand, it’s still acceptable to talk about the new year and even make resolutions throughout the month of January. There is no mandate that this must happen during the first few days of the year. We want to be thoughtful, intentional…clear out the holiday fog.

    I don’t know about you but last week my email inbox was filled with numerous offers to help me make resolutions for the new year. The vast majority of them have some monetary cost associated with them — make meditation part of your new year and sign up for this online course, maintain dietary goals for the new year by signing up for this meal plan, or buy these books to get you started for the new year. Whole Foods even mailed me a brochure titled, Feed Your Resolution: Solutions for Special Diets.

    Thank you very much but I think I can do this on my own.

    Actually, this may the first year I’ve not made any New Year resolutions. Basically, it’s all about change. We either want to start doing something different or stop doing something we’re doing which we know no longer works for us. Well, I don’t need the Gregorian calendar new year, Chinese New Year, or Jewish New Year to initiate any changes.

    Having a chronic health condition is all about change — monthly, daily, and sometimes hourly changes. What may have worked for me yesterday, no longer does today and I’ve got to work around that to achieve my goal whether it is opening a bottle, getting nourishment, or soothing some pain or discomfort.

    I am open to change…thankfully…because you know — a sure sign of insanity is repeating the same patterns and expecting different results.

    Back to New Year resolutions, there’s certainly nothing wrong with making them. It’s the maintaining them that can be problematic for some. Here’s a short piece to help you with the process. Last year I interviewed a few friends about their resolutions. But I’ll resolve to continue learning and making changes on an as-needed basis…which is definitely more than once every 365 days.

     

  • Passion: Motivation to Move through the Bad Stuff and Experience Joy

    Recently I attended an annual patient conference and had a conversation which served as a catalyst for a couple of blog posts and this podcast episode. What advice do you give someone experiencing apathy and a lack of motivation? How do you cultivate a passion which can make it easier to move through the challenges of living with a chronic health condition so you can still experience joy?

    There are no easy answers.

    Featured in this episode are three people I know who have shared their passion with me. Mindy brings her love of dance to our myotonic dystrophy community.

     

    Hazel shares her knowledge and experience with service dogs to those with multiple sclerosis as well as other chronic health conditions. And James helps his co-workers and friends experience the Totality — and other celestial happenings.

    To learn more about Mihaly Csikszentmihalyi and the flow concept, here’s a TED Talk, and the books I read: Flow: The Psychology of Optimal Experience  and Creativity: Flow and the Psychology of Discovery and Invention.

  • Passion

    At the recent Patient Advocacy Conference I attended, I spoke with a community member. We’ve previously met but I’ve talked more with his family members. He’s always seemed to be rather shy.

    He asked me how I motivate myself. I’ve been asked this before. Many people with myotonic dystrophy experience both overwhelming physical fatigue as well as extreme apathy. The first time I attended the annual patient conference I participated in a panel discussion. Afterwards I had someone approach me with utter disbelief that I had the disease. Even though I appeared to be similar in age to her daughter, I appeared to function like a normal person.

    The more you learn about the disease, the more you realize the diversity of symptoms and severity. I’m sure there are many additional factors the research community doesn’t take into account, i.e. my self-care routines are like a full-time job.

    But getting back to this young man (age is relative and he’s ~20 years my junior) and his question. There are definitely no simple answers and no silver bullet. Some people have more of a cognitive impact from this disease while others have more physical manifestations with muscle weakness. And what about our other genetics? Maybe I have a more inherent motivation quotient than he does?

    But I wanted to be helpful and I appreciated he looked to me for advice. I asked him about depression. Having a progressive chronic disease can definitely cause one to be depressed and lack motivation. I asked him what gives him pleasure and he talked about athleticism. I realized, through our brief conversation, that having a passion is integral to feeling motivated. That was what I was able to come up with…I have a passion and everyone I know who is faring well with a difficult situation also has a passion for something. You’ve got to harness that passion to get you through difficulties.

    The passion may be to sing opera, sail a boat, climb a mountain, chair dance, write short stories, or empower others to lead healthier lifestyles. So, how do you find your passion?

  • Glass Half Empty: Complaining, Kvetching, and Ranting

    Glass Half Empty: Complaining, Kvetching, and Ranting

    It’s time to mix things up…just for this episode. I explore the fine art of complaining…and I complain a little. No whining though. Conversations with Toni Bernhard, Mike Hamlin, and Laurel Roth Patton included. Enjoy!