The Quest podcast, proudly presented by the Muscular Dystrophy Association, is part of the Quest family of content. Hosted by Quest Editor-in-Chief, motivational speaker and writer Mindy Henderson, the podcast will bring thoughtful conversation to the neuromuscular disease community and beyond about issues affecting individuals living with disabilities and those who love them. Our hope is that these conversations will educate and inform, demystify and inspire, perpetuate progress, and entertain. We are here to shine a light on all that makes you – you. Whether you are one of us, love someone who is, or are on another journey altogether, thanks for checking us out.
About Our Host Mindy Henderson
Mindy Henderson, host of the Quest podcast, was diagnosed with spinal muscular atrophy, type 2 when she was 15 months old. In addition to hosting this podcast, Mindy is also a motivational speaker and author, with her first book set to be released fall of 2022.
This next episode in our "Access to the World" series focuses on hotel accommodations for individuals with disabilities. accessibleGO is a travel website, specializing in accommodations for disabled travelers. During this conversation we discuss the challenges involved in making travel arrangements for those with special accessibility needs and how accessibleGo is helping to solve the problem to make travel easier for individuals with disabilities.
The second in our "Access to the World" series, this episode focuses on the unique challenges air travel presents to individuals who use wheelchairs. We will discuss the current state of air travel and the inconvenience, and emotional strain it causes travelers who use wheelchairs. Then, we turn the tables to talk about solutions. The work that is being done around legislation and aircraft crash-testing and modification is phenomenal, but these things take a village to bring to fruition.
For individuals with NMD, or any disability, travel is complicated by all kinds of logistical issues and accessibility barriers. There are places and experiences that are "off-limits" to individuals who use wheelchairs because certain destinations just aren’t accessible, or accessible enough. Kevan and friends have broken through those barriers by creating a nonprofit organization that developed a special "adult-size" backpack so that Kevan and his friends could go explore Europe and China, without being tethered to a wheelchair. The backpack allowed his friends to carry him, accessing the parts of these countries he would not have been able to experience from his wheelchair. They have created two documentaries from footage shot from these trips, largely because..."they wanted the proof because no one would have believed it."
For anyone with NMD or other disabilities, getting from one place to another can be a challenge. On today's episode of Quest Podcast, we will be discussing the various options in accessible ground transportation, from driving adapted vehicles, to riding on buses and trains. We'll examine the various modes of transportation, what systems have been designed well and which ones...maybe leave a little to be desired...and how YOU can get involved to advocate for improvements to public transportation.
For anyone with NMD, the journey begins with a diagnosis…a name for the symptoms that are manifesting. Just getting to the diagnosis can be a convoluted odyssey and take months if not years, and even with a confirmed diagnosis, the odyssey is just beginning. In this episode, we will dive into that conversation from multiple perspectives - an individual diagnosed in infancy, an individual diagnosed in early adulthood and a parent who went on the journey as an advocate for their child. We will talk about each of their stories and the path they took to get a diagnosis, how it impacted their lives, how they've learned to live with it, what’s been hard, what’s been easy-er, and how they have coped and made a life that works for them.