Glass Half Full with Leslie Krongold, Ed.D.

An episode to catch everyone up on what’s been going on in the life of someone in their early 60s with a progressive health condition. Waning energy prohibits many of us for reaching all of the goals we’d like to achieve. It takes time to acclimate to a new normal and reassess which goals are most important and how best to achieve them dealing with new limitations. Foremost for someone with myotonic dystrophy, like myself, is getting enough sleep so I have energy to maintain a regular movement practice even with shifting mobility. The annual May Movement Challenge I’ve produced for the last three years will change. To stay current, join the Movement Challenge Facebook group. If you live near the north coast of California, or plan to visit, check out a new local program – Leslie’s Accessible Walks.

My guest for this Glass Half Full podcast episode is Patrick Regan. Patrick is a young man living in Alaska with SMA (spinal muscle atrophy) who uses AAC to communicate. We've gotten to know each other through online BORP classes -- Tai Chi and Pilates.  Our communication previous to our Zoom podcast recording was through Zoom’s chat. Patrick is not able to speak and uses technology to communicate via text or assisted speech. Our podcast recording was the first time I actually saw him live since he usually has a photo of himself in the Zoom window. And he varies the photos so I’ve seen him dressed up for different themes especially in the Rumba with Tina dance class.  Anyhow, Patrick has proven himself to be quite tech savvy and I wanted to learn more about the AAC (Augmentative and Alternative Communication) he uses.

I don’t know who coined the term movement is medicine, but it resonates for me. My early experiences with exercise were not joyful; grade school physical education was bad medicine. But once I started dancing with friends in high school – before carding and ID checks were mandatory – I experienced movement in a positive way. Shortly after college I started a yoga practice which was medicine for my body and mind. In this podcast episode I tell my story of what led up to the 2021 launch of the May Movement Challenge -- a month of free online movement classes that are meant to be accessible and adaptive for anyone and everyone. You’ll also hear from Natalie Graniela – one of the several movement instructors participating in the annual May Movement Challenge. Natalie talks about her gyrokinesis movement practice and working with senior adults as well as people with different bodies and abilities. For more information visit the website: https://maymovementchallenge.com,  register for this year’s month of free online movement classes: https://us02web.zoom.us/meeting/register/tZMvd-yhrDsrGNB8RbtdI8mhTYG-_BUJ90mB,  and join the Facebook group: https://www.facebook.com/groups/166227591989420

February 28th is Rare Disease Day. Twenty-five to 30 million Americans live with a rare disease. For more facts and figures related to rare diseases, check the NORD website. This podcast episode catches up with Aditi Kantipuly, a physician and advocate, immersed in the rare disease community. As a young girl Aditi learned about a child born with osteogenesis imperfecta – a rare bone condition – and has been captivated ever since. Her journey includes a masters program in public health, a Fulbright scholarship to small villages throughout India, and medical school. Currently she’s exploring the roles of health equity and social immunity. For earlier podcast episodes related to rare disease, It’s not that easy being rare, Rare disease and the need for research, and Rare and invisible disability + spoon theory. Check this webpage for a list of other podcast programs related to rare disease.

The holidays can be difficult for most anyone but if you live with a chronic health condition and/or physical disability, the barriers to joy and festivity may increase. Four women engage in conversation about coping with the holidays -- Leslie Krongold with myotonic muscular dystrophy, Andrea Klein with collagen 6 congenital muscular dystrophy, Janice Laurence with Charcot Marie Tooth neuromuscular disease, and Roma Leffmann who advocates for people with acquired disabilities as a stroke survivor.  Together they discuss issues related to #dysphagia #celiacdisease #incontinence #osteoporosis #singlelife #disability #myotonic #musculardystrophy #respiratoryproblems #stroke #adaptivefitness #dance #glutenfree #ableism #gifting #mobility and, of course, #coping  

When to stop driving a moving vehicle? That is the question to ponder; is it a toss up between being a responsible adult or maintaining a sense of independence? For many people, this is a difficult choice. If you live in an urban or suburban location you may have many options available if you give up driving. For others, a car may be a necessity -- one needed to get to gainful employment, purchase groceries, or use to transport family members more disabled than yourself. In this academic paper, physicians discuss health conditions that predispose patients for difficulties with tasks required for driving a car safely. People with Alzheimer dementia, epilepsy, visual impairments, sleep apnea syndrome, cardiac dysrhythmias, substance dependency, and neurological disorders with a cognitive component are at risk. In this MDA Engage recorded webinar, the presenter shares this factoid -- For every mile driven there are 20 decisions that need to be made and less than ½ second to react This podcast episode explores the decision-making process for podcast host, Leslie Krongold, as well as for guest, Keisha Greaves. Both chose to give up driving before a doctor told them to. If you, or a loved one, are concerned about your current driving skills, take this online assessment to gauge whether or not you should explore driving options. Each U.S. state has unique laws regarding senior and/or drivers with specific disabilities; check what your state has on the books. If you're a caregiver in search of advice for your loved one, check out this U.S. Dept of Transportation website.

September 15th is International Myotonic Dystrophy Awareness Day. To learn more about helping educate and advocate for Myotonic Dystrophy visit the Muscular Dystrophy Association or Myotonic Dystrophy Foundation. The purpose of this Awareness Day is to garner the attention of the wider general public, policy makers, regulators, biopharmaceutical representatives, researchers, health care professionals, and anyone with an interest in changing the future of myotonic dystrophy. Raising awareness of myotonic dystrophy will help improve service provision, basic research, drug development, and policymaking related to the disease. Increased funding for myotonic dystrophy research will improve health outcomes, reduce disability, and increase life expectancy for individuals living with the disease, and holds great promise for helping individuals with diseases with similar genetic bases, such as Fragile X syndrome and Huntington’s disease. To learn about the different types of myotonic dystrophy, visit this NORD webpage. In addition to this podcast host/producer who lives with Myotonic Dystrophy Type 1, the following podcast episodes have featured guests living with DM1, DM2, or caregivers in a DM family: Food = Medicine Passion and Motivation to Move through the Hard Stuff Working with Wounded Warriors Music Gives Me a Peace Bubble Salute to Caregivers Stories of Healing with Essential Oils

The lyrics to Don't Laugh at Me speak to anyone who has felt like an outsider. Whether or not you were bullied as a child, this song will likely resonate with you. Steve Seskin, the singer-songwriter, and his co-writer were first inspired by a young girl's experience of teasing in grade school. But, the song encompasses inequities experienced by those living with physical and developmental disabilities as well as people experiencing hard times. A few months ago I [Leslie] first heard the song in the online dance class, Rumba with Tina. Many of the other virtual dancers were familiar with it and sang along. I just cried. After the class I googled the song title and discovered I knew the songwriter. Steve's wife, Ellen, has been a participant in the Northern California Myotonic Dystrophy Support Group I facilitated. What a small world! Steve's songs have been recorded by recording artists such as Garth Brooks, Reba McEntire, Waylon Jennings, Tim McGraw, Colin Raye, and Mark Wills. Visit Steve's website to learn more about his music and check out the organization Steve is involved with: Operation Respect.

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.

Glenn Ribotsky, a Board member with the Western Neuropathy Association, shares his dramatic initiation as a patient into the world of peripheral neuropathy. Now, 18 years later he advocates and offers support to others experiencing the often, invisible pain of a neuropathy.

Dr. William Lowery, a practicing pulmonologist at Alameda Hospital in Northern California, was diagnosed with Limb-Girdle muscular dystrophy some 20 years ago. He's now founded a non-profit organization to help others shorten their diagnostic odyssey with free genetic testing and his expert guidance.

What is Toxic Positivity? How to avoid it and what to do when confronted with it.  One definition in the context of overstressed teachers during the pandemic includes "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." One mental health website's definition, "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."  

When you're told you have a tumor the size of a grapefruit growing in your brain, and you have it removed, and you live to tell the story about it without experiencing profound disability, then you have a lot to be grateful for. That's what happened to Amy. Learn more about Amy's health story in this podcast episode. She had no idea about a brain tumor until family members made an intervention and tests revealed the source of her various symptoms which taken individually caused no alarm for Amy. 'Tis the season to be grateful. And Amy is grateful for much. What are you grateful for? In the latest AARP magazine Michael J. Fox talks about how gratitude is a source for his continued optimism in spite of having to give up acting because of unreliable speech. The UC-Berkeley Center for the Greater Good explores the concept of gratitude with evidence-based research. Check out articles and video clips here. An earlier podcast episode, Gratitude & Thinking Small, includes an interview with noted author and Buddhist practitioner, Toni Bernhard.

Traditionally the month of October is the time to become aware of people with disabilities -- either a visible or invisible disability -- but here we're drawing attention to all those who face physical and mental health challenges. With 1 in 10 Americans diagnosed with a rare disorder (whether it's a visible or invisible disability) and all of the others making up ~ 25% of Americans with chronic health conditions, let's practice an awareness on a daily basis. Sunny Ammerman, NORD Ambassador for Indiana, talks about spoon theory, her role as a Patient Advocate for NORD and the Pituitary Network Association, and her blog, Insomnia Doodles. Earlier podcast episodes have explored Disability Awareness -- The D Word and The Pirate as a Disability Action Figure. To learn more about Rare Disease, listen to this podcast episode, It's Not That Easy Being Rare. Sunny is an avid gamer and Virtual Reality enthusiast; stay tuned for a future episode where she shares her love of VR.

What is that growing on me -- could it be skin cancer? Have you asked yourself this question? During the pandemic I ignored a couple of what I thought were pimples because I was terrified to go inside a building. According to Wikipedia... Squamous cell carcinoma of the skin is usually not life-threatening, though it can be aggressive. Although the nonmelanoma skin cancer basal cell carcinoma (BCC) is rarely life-threatening, it can be troublesome, especially because 80 percent of BCCs develop on highly visible areas of the head and neck. Mayo Clinic Apparently I have, or had, both. After a few biopsies, a topic chemotherapy treatment, and now Mohs surgery, I hope this closes a chapter. Yet it seems nearly inevitable that there will be a recurrence. And thus my education on this topic is in its genesis. A few takeaways from this experience -- don't leave the house without sunscreen protection and learn more to successfully advocate for myself. Here's an entry from a chronic illness blogger about her ordeal with skin cancer.

Falls don't always happen when you're standing. Although balance and fall prevention classes help increase your odds of preventing a near fall, some falls are just unusual accidents. Like sitting in a chair where the seat gives way and your derriere hits the ground. That's one unusual fall. Fortunately, movement and flexibility classes improve your chances of diminishing the impact of the fall. For more information on Balance and Fall Prevention, listen to this podcast episode with UCSF Physical Therapy Professor, Erica Pitsch. The Mat Pilates class offered by BORP is described as: Designed by and for people with spinal cord injuries but open and beneficial to all, the Adaptive Pilates Mat Class is a unique class essential for those that sit in a chair all day and are able to get  up and down off of the floor or have access to a raised mat.  Liz Ann will lead the class through the basic principles of Pilates, helping you to get stronger, more flexible and even to have improved coordination. Pilates also uses specific sequential breathing methods combined with intense concentration on a specific body part to create an effective exercise routine. To find out about other adaptive/accessible online movement classes, join the Facebook group: Movement Challenge.

Christina Leffmann, or Roma as she prefers to be called, is passionate about indoor and outdoor rock climbing as well as the Acquired Disability Peer Support Group she started. In June Roma traveled to Salt Lake City to participate in Paraclimbing National Championships (you can see Roma climbing at 12:30 in the video). In her early 20s Roma experienced a series of strokes and identifies as having an acquired disability which is different than being born with a disability or aging into a disability. Currently she works for the Center for Independent Living and has an active life with a daily stretch routine, swimming, and weekly cycling. And rock climbing, of course. Earlier this year Roma shared her movement practice at one of the weekly Zoom meetings as part of the May Movement Challenge.

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.

It's the May Movement Challenge! This episode explains all you need to know about the #MayMovementChallenge2021 featuring Stanford University's Research Physical Therapist, Tina Duong. Tina's worked with both children and adults with spinal cord injury, stroke rehab, and neuromuscular disease. She talks about stretching, diaphragmatic breathing, and how to take care of yourself when starting a movement practice. Learn about the FITT Principle (Frequency, Intensity, Type, and Time) as it applies to movement and exercise. Once you've listened to this episode, don't waste any time in registering for any of the five information sessions on Saturdays during the month of May. Take a look at the Events Calendar for May with over 75 movement classes -- all free, online, and most with accessible accommodations. Each Saturday in May will feature movement instructors leading a stretch, discussing a different aspect of movement as well as motivating us to select attainable movement goals.

Telling a patient story can be a highly emotional task for anyone. Thankfully, there are people who can help. Emily Newberry - author, speaker, coach - at the Kaiser Permanente in Oregon, is one of those people. Emily was a natural story teller having spent part of her youth helping others tell their stories through song. Over the years she's perfected the craft and simplified the process. It's not rocket science, she says, just remember two facts and a feeling. As part of Kaiser's Person & Family Centered Care, high impact storytelling is important for patients as well as healthcare professionals. A patient story can create a call for action.