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.