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.
Today's guest is Lorraine Woodward, an entrepreneur, business owner, and life-long advocate for people with disabilities. She is the creator of multiple businesses, services, and foundations. An avid traveler, she created an accessible vacation home at Carolina Beach, NC, for her family to enjoy and to serve as a short-term rental home for other travelers in need of an accessible location. She recognized a serious lack of accessible vacation homes, which led to her newest endeavor: Becoming RentABLE.
Sabrina Johnson lost her dad to ALS in 2019. In this episode, she shares how she turned her pain into purpose and became an ALS advocate. The journey to diagnosis was hard enough, but watching her dad battle a terminal disease forever changed her. After a lightbulb moment, she decided to turn her anger into ambition and became an advocate for patients and families with ALS. In 2021, she founded Sabrina Johnson Advocate LLC to provide support, resources, and guidance to others who are navigating life and loss with ALS.
Today we are connecting with the key players of two national ALS Registries to discuss the power that these registries harness to better understanding this disease, trends, and potential treatments. We will be speaking with Dr. Paul Mehta, the Principal Investigator for the United States congressionally-mandated National Amyotrophic Lateral Sclerosis (ALS) Registry. A registry database which resides within the Centers for Disease Control and Prevention and is responsible for providing medical, scientific, and epidemiological expertise on matters related to ALS. We will also speak with Dr.
Judith (Judy) Heumann is a lifelong advocate for the rights of disabled people and is often referred to as "the MLK of the disability civil rights movement". She has played a role in the development and implementation of major legislation including the IDEA, Section 504, the Americans with Disability Act and the Convention on the Rights of Persons with Disabilities.
Parenting is one of the toughest jobs on the planet. It is also one of the best, most rewarding, incredible things you can do. In this episode, we invite you to listen to our coffee-talk about three personal journeys through motherhood with a neuromuscular disease. Each of our stories is different, and we hope that each will bring you joy and encouragement. Please know, this conversation is specific to our own, individual journeys and is NOT intended to be used as medical advice or medical fact for anyone other than the individuals involved.
Today in the spirit of Valentine's Day, we are talking with two married couples about their dating and eventual marriage. Under most circumstances, dating and marriage can be full of highs and lows, and when you throw a disability into the equation, there can be some unique challenges for the couple to work through. Today we're going to benefit from all the wisdom these two couples have to share.
Having a sibling can be amazing. Siblings can be built-in playmates and best-friends, your partner in crime and a constant in an individual's life. Siblings represent deep-roots and home for the entire life journey they embark on together. But sibling relationships are not without complications. In this episode, we are talking to sibling pairs where one of the siblings has a neuromuscular condition and the other does not.
Need a last-minute gift-giving idea? You’re in luck because in this episode, we are talking all about fun do-it-yourself crafts and gift-giving, recipes and more. We have two guests joining us who are known for their art, entertaining and baking skills and we are all sharing ideas for how to make do-it-yourself easy AND accessible.
The holidays can be a fun, festive time of year. There are decorations, music, parties, food...but for many, the holidays can be an incredibly stressful time. And when dealing with an illness or disability, like a neuromuscular disease, while the holidays can still be lots of fun, there are also additional circumstances that can increase our stress.
In this episode, we will tackle some of these difficult topics and provide some suggestions for how to handle holiday stress.
This month, we continue our series on "Access to the World," with a look at architecture. In this episode, Mindy speaks with Dominic Marinelli. Dominic is talking all about building codes in commercial architecture to make buildings accessible, how those codes change and evolve year to year, and how we can all do our part to make buildings more accessible.
This month, we continue our series on "Access to the World," with a look at architecture. In this episode, Mindy speaks with Paul Robertson who lives with Limb Girdle Muscular Dystrophy, type 2J. Paul recently built a new home to suit his changing mobility and joins us to discuss the building process and what he did to make his new home accessible.
October is Disability Employment Awareness Month, so on this episode of Quest Podcast, we’re exploring the world of employment for individuals with disabilities.
Despite a huge talent-pool of candidates in the U.S., only approximately 29% of individuals with disabilities hold positions in the current workforce. In this conversation, we’re discussing why that is, what is being done to improve that statistic and how we can all use our voices to make a difference.
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.