Two Disabled Dudes Podcast

Physical Therapy is an important part of care for many people in the rare disease and disability communities,  However, it's difficult to find a phhysical therapist who will work to understand your disease.  That's why we enjoyed talking with Dr Gretchen Hawley.  See how she's different and how you might be able to put some of her principles into practice.In this Episode:Kyle talks about Team FARA's participation in Bike New York's Five Boro Bike Tour along with 30,000 other people.You Got This, Mental Health featuring Shelley Bowen - Shelley joins us again to talk about the value of a good therapist when facing life's challenges.Dr. Gretchen teaches us that listening and understanding are important aspects of a good physical therapist.Thank you notes - Team FARA Teammates and new friends Chris, Tierra, Chris, Kahlua & KaiLinks and Resources:Dr Gretchen InstagramFacebookYouTube The MSing Link Wellness ProgramThe MSing Link PodcastBook InfoBarth Syndrome FoundationThis episode brou

There are lots of things that may be accessible for one person but not another.  Some are inconvenient, and some are impossible.  From topics in other episodes to recently traveling together, we noticed a handful of things that make sense, and things that don’t make sense. Listen for experiences, both good and ridiculous, as we discuss the challenges of accessibility.In this Episode:Sean tells us the latest in his dealings with StorQuest.  Spoiler: It's not good.You Got This, Mental Health - Sean and Kyle share similar stories of their wheelchairs rolling away from them. We all struggle. Sharing with others can help lighten the load.The Dudes talk about a recent experience at a hotel.  It helps expose some issues about accessibility.Thank you notes - An aquaintance at a laundromat, and Neighbor Melanie (the best!)Links and Resources:Episode 193 - Accessibility Matters: Air Travel is Not Exempt - with Mary CarusoThis episode brought to you in part by Reata Pharmaceuticals.Reata Pharmac

For college students, sports games are a huge part of the college experience.  However, students with disabilities are often left out due to poor accessibility.  In episode 217 you'll hear from Noah Griffith, a journalism major who wrote a letter about his experience accessing the student section at a basketball game. Noah used his voice to make a difference.In this Episode:The Dudes discuss how planning and execution are two different things when it comes to Airlines.You Got This, Mental Health featuring James Miller - You might remember James from Episode 068.  James is a Psychotherapist and joins us to talk about the people we choose tto spend our emotional energy on.The Dudes talk to Noah Griffith about the difference he is making at Auburn University due to his disability.Thank you notes - A Chili's Host, and Airport Bathroom GuyLinks and Resources:James Miller's Book - Life Lessons: You Are The Expert On Your Life | A WorkbookNoah's Letter to the President of Auburn UniversityAuburn for a

Research studies are designed to investigate the details of our bodies and lives.  The research process has the potential to point out how our disability limits us.  This can be tough to take.  That’s why it’s important to recognize the emotional response to research.In this Episode:Kyle left the house to get pants. You Got This, Mental Health featuring Heidi Behr - You might remember our friend Heidi from Episode 182 - Comparing Ted Lasso To Reality.  Heidi returns to talk about JOY and how we find our way there.The Dudes discuss the emotional response to the use of assistive technology.  Emotions can get heavy when we think about the need for these things.Thank you notes - Kyle's Socks and Friends that help move stuff Links and Resources:Branding ScienceHeidi Behr, LCSW, MSW, MPHThis episode brought to you in part by Reata Pharmaceuticals.Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative th

This is the first episode ever that does not feature both Dudes! Sean is joined by our friend and guest host, Effie Parks from the Once Upon A Gene Podcast.  Effie produces short “Effisodes” on her show and one in particular grabbed Sean’s attention. With Kyle on the road, Effie agreed to help The Dudes with this episode and takes Kyle's place, in addition to allowing us to share one of her Effisodes. In this Episode: How Effie got into podcasting.  You Got This, Mental Health featuring Shelley Bowen - Grief is a process. Everyone grieves differently.  It's ok to figure it out as you go.  Listen to hear Shelley's wisdom. In an Effisode, Effie talks about a touching experience at a recent Birthday Party. Thank you notes - Rodney Samaco, Ph.D., PT with Dri Links and Resources: Barth Syndrome Foundation This episode brought to you in part by Reata Pharmaceuticals. Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission is to develop innovative therapies that

According to an article Kyle read on Forbes.com, "Inspiration Porn provides kind of superficial pleasure and gratification for the viewer, while objectifying , often harming the mostly passive subjects being looked at.”  Sounds pretty bad.  Find out what the Dudes think. In this Episode: Kyle gets Door Dash delivered to the wrong address...again. You Got This, Mental Health featuring Kate Walker - Many of us ask ourselves "why me?" when thinking about our rare disease.  Kate helps us explore why we should brake that habit. The Dudes discuss how they might be perpetuating the idea of Inspiration Porn by benefiting from the attention that comes from having a disability. Thank you notes - A grocery store-apple-helper and a Chipotle cashier. Links and Resources: Matthew LaFleur's Article: The importance of resilience and other lessons from my diagnosis Stella Young's TEDx Talk: I'm not your inspiration thank you very much How to Avoid "Inspiration Porn" by Andrew Pulrang for Forbes.com This episode brought t

As Sean says: Government is HARD - especially when trying to navigate the Social Security Disability system.  That’s why we talk to Spencer Bishins who worked in the Social Security Administration for years and shares his insights with us.  Spencer just scratches the surface with us-  but you can find all the details in his book: Social Security Disability Revealed - Why it’s so hard to access benefits and what you can do about it. In this Episode: Sean explains how StorQuest made it so easy for him to never do business with them again. You Got This, Mental Health featuring Lara Bloom - There are many challenges living with a disability.  On top of the physical challenges, people with invisible disabilities often have a hard time getting strangers or even doctors to believe them - Lara shares her perspective and how the Ehler's Danlos Society is addressing the issue. Spencer Bishins gives us some insight into why it's so hard to access Social Security Disability Benefits. Thank you notes - Two nice people.

Maneuvering a wheelchair presents many situations that are much different than a person who uses their legs to get around.  When you offer to help someone in a wheelchair, here are a few things you should keep in mind.   In this Episode: Kyle checks out a new section of bike trail so Sean wants to make sure he does it safely. You Got This, Mental Health featuring Kate Walker - Depression is common for people living with Rare Disease - Kate shares a bit of her experience dealing with depression. Sean brings his "Top Ten" list of annoyances while traveling in a wheelchair - constructive feedback for those who want to help. Thank you notes - The people who make bike trails happen, and Sean's editors at Friedreich's Ataxia News Links and Resources: Depression and anxiety in patients with different rare chronic diseases: A cross-sectional study This episode brought to you in part by Reata Pharmaceuticals. Reata Pharmaceuticals is the company that makes SKYCLARYS™ (omaveloxolone) 50 mg capsules. Our mission

For Rare Disease Day 2023, we were honored to moderate a virtual panel with our friends at Jett Foundation.  The theme was Thriving with Duchenne; a Rare Disease Day event focused on mental health and anxiety and it features a diverse panel of patients, caregivers, a life coach, and a Psychologist.  Duchenne Muscular Dystrophy (DMD) affects mostly males and causes progressive muscle damage in the entire body. It is the most common fatal pediatric disorder.  Duchenne has no cure. But the individuals in this episode are determined to Thrive with Duchenne.

In this Episode: You Got This, Mental Health - Our friend Shelley Bowen (Ep 140) takes us through her experience having the hard talk about death. The Dudes are quite uncomfortable talking about SEX, especially sex and disability.  So we welcome Jennie Williams from Enhance the UK to introduce the topic. Thank you notes - Kyle's Condo Community - Old Forge Crossing, and a backwards thank you for StorQuest. This episode happens to contain two topics that we’ve never addressed in depth.  This is because we never had the words or the right people to guide us. Our feature conversation is with @enhancetheuk Founder & CEO, Jennie Williams who leads us on a deep dive into the world of sex and how it matters amongst disabled and nondisabled persons. Shelley Bowen also joins us again for a short chat on preparing for the tough conversation of advanced directives. Ep210 is fully packed, buckle up! Links and Resources: Undressing Disability Barth Syndrome Foundation

In this Episode: You Got This, Mental Health - Feeling seen and heard.  Some of the responsibilty is on you. Can a single person make a difference? The amazing story of the first approved drug for Friedreich's ataxia (FA) Thank you notes - Reata Pharmmaceuticals, and Kyle's landlord at work.  As the story goes, in an effort to do whatever she could for her son who lives with Friedreich's ataxia (FA), a concerned mother connected a few important dots about science and the pharmaceutical industry.  When she decided to make a phone call to the Friedreich's Ataxia Research Alliance (FARA), she started a series of actions and events that eventually led to the approval of the first treatment for FA, SKYCLARYS.  Listen for the details.Links and Resources: Announcement: First Medication to Treat Friedreich's Ataxia Approved on Rare Disease Day! 

In this Episode: The very first treatment for Friedreich's ataxia (FA) was approved last Tuesday!  A deep dive into this next week. You Got This, Mental Health -  There's not one "right" direction in life.  Keep moving forward and making progress. Thank you notes - Clinical Team at Children's Hospital of Philadelphia and Sean's Personal Barista  It’s easy to second guess our choices and doubt our decisions. Although there may be more efficient steps to take or faster directions to follow to get to our destination, is there ever a wrong way? Hear The Dudes share their experiences and perspectives. Links and Resources: Sean's Column: Moving in a Positive Direction | Living With FA Reinforces My Commitment to Making Progress

In this Episode: How Kyle ended up at Cracker Barrell for chicken fried steak at lunchtime You Got This, Mental Health featuring Andra Stratton - Managing expectations for drug development Asking for help is complicated.  The Dudes talk through some of the different scenarios that make it so. Thank you notes - Gail Moore   We all need help sometimes.  However asking for, and receiving help are not straight forward.  Sometimes our pride gets in the way of other people trying to offer help.  Links and Resources: Asking for help is so damn hard.  Here's how to make it easier This episode brought to you in part by Horizon Therapeutics. In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant

In this Episode: Dr. Kyle gives his advice. You Got This, Mental Health - Self Image Audrey Greenberg is the CBO of Discovery Labs and the Center for Breakthrough Medicines.  She talks with The Dudes about how authenticity can benefit all of us. Thank you notes - Bill at Meineke & Taylor Wohler   When you come as you are, others feel free to bring their authentic selves to the conversation.  This is one of the many things we took away from our conversation with Audrey Greenberg, CBO of the Center for Breakthrough Medicines. Greenberg manages the 1.6 million-square-foot campus at the Discovery Labs King of Prussia, PA one of the largest facilities for life sciences and technology in the world. Links and Resources: Mental Health - Self Image This episode brought to you in part by Horizon Therapeutics. In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and

In this Episode: Almost a year later, Kyle gives an update on his wheelchair drama. You Got This, Mental Health featuring Andra Stratton - Managing our expectations for Drug Development. The Dateability App - Designed by someone with a disability for the disabled community. Thank you notes - Dr. Anna Stepanova & Aaron Fisher   After learning of her own disability and chronic illness, Jacqueline was exposed to a persistent ableist mentality and she wasn’t a fan. This showed up a lot in her dating life and she couldn’t find a dating app that she felt safe using and that helped her meet people that understood disability. So, she teamed up with her sister and they launched The Dateability App. Links and Resources: Mental Health Uplifting Athletes This episode brought to you in part by Horizon Therapeutics. In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more

Welcome to Season 9! Dolly Parton wants to see more kindness in 2023. However if you ask Sean, kindness is not the issue - it's awareness of others around you. It will make sense after you listen. Sean's column on the subject: No Good Excuse This episode brought to you in part by Horizon Therapeutics. In honor of Rare Disease Day, the #RAREis Global Advocate Grant program is awarding 50 grants totaling $250,000 to global patient advocacy organizations working to support the community. Learn more and apply at rareiscommunity.com/grant

There's a common debate going on in many of our heads when it comes to committments.  Whether it's meeting a friend for coffee, or going to a concert with a group, we have to decide if we can make it.  If we decide not to go or even worse, cancel at the last minute, is it for a legit reason or are we just making an excuse?  Ultimately that's for you to decide for yourself... Resources mentioned in this episode: Intro post for Sean's column: No Good Excuse 2DD episode 178 - Man Turning Into Stone - Joe Sooch     This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.   The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever

Making the transition to independence is difficult to begin with. It is further complicated if you have a rare disease. Lauren Riggs joins The Dudes to talk about her recent experience moving away from home to go to school at University of Oklahoma and then grad school in Texas. Lauren lives with Friedreich's ataxia (FA). Her own journey with accessibility leads her to facilitate accessibility for others. During this episode, Lauren explains the Spoon Theory which many people living with rare or chronic disease can relate to.     This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.   The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the worl

When Katie Lloyd's son was diagnosed with a rare, lifethreatning disease, she began to notice that people around her reacting to the news in some unintentionallyinsensitive ways. When we witness someone going through a difficult situation, our first impulse is to say something encouraging: "Chin up!" "The Sun will come out tomorrow".  However, responses such as this can be counterproductive because they lack empathy and understanding.  Instead, perhaps we should simply acknowledge the difficulty and "hold space for each other."  The Dudes agree that this is a topic that we can all learn from. Katie's blog: https://averyrareadventure.com/      This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts.   The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we

We have been doing this for 6 years - we're still friends, and we hope a few people have enjoyed listening.  Let's celebrate episode 200 with a little reminiscing, a few old snippets, and a brief look at the future of the show. Some of our favorite epispdes that we mentioned: 055 - Facing the Realities of Physical Changes 073 - Jeff Bell Part 1 - What is OCD? Jeff's cause: The A2A Alliance | Adversity to Advocacy 083 - Reasons to Push Our Limits 166 - Ultra Rare Drugs at no Cost to The Patient - Stan Crooke Stan's cause: n-lorem FOUNDATION 181 - Every Person Matters with Tom Hamilton This episode is brought to you in part by Catalyst Pharmaceuticals and LEMSAware.com/podcasts. The LEMS Aware Podcast is not only dedicated to those affected by Lambert-Eaton myasthenic syndrome, a rare neuromuscular disorder but to those impacted by adult (late) onset rare disease. Whether you’re a patient or caregiver, rare disease can be isolating. Join us as we hear about the challenges of living with rare disea