Two Disabled Dudes

Season 10 kicks off with ep221. Life is constantly changing, especially when living with progressive rare disease. Both Kyle & Sean are living with Friedreich’s ataxia and their abilities are changing often. Recently, Sean hit a mini-golf course and although it wasn’t what he remembers as a teenager, he still found ways to have fun. Ep221 reminds us that “fun” is what you make of it and how you define it.

Links and Resources:

• Sean's Column - Living with Friedreich's ataxia doesn't mean I can't have fun

For the last episode in Season 9, we want you to know how much we appreciate you listening to this show.  This season has been especially trying as we unknowingly doubled our workload at the beginning of the season.  Listen as the dudes explain.  The conversation goes existentially deep as usual.  Enjoy.  Thank you for listening.

In this Episode:

• In a previous episode, the dudes talked about a hotel bed that was too high.  Sean just got a new bed and you might be able to guess what he thinks of it...
• You Got This, Mental Health featuring Dr. Al Freedman - We've had him on Multiple times because he's doing great work. Dr. Al's sweetspot is the intersection between Rare Disease and Mental Health because of his son Jack who lived with SMA for 26 years.  Dr. Al joins us to talk about the fact that Rare Disease may not be the only source of challenge in someone's life.
• The Dudes are both wired for productivity so staying busy is a big part of life.  But when is it too much?  Where's the line?  How does this line play into our vision and goals?
• Thank you notes - Ted Lasso, and Sean's Landlords.

Links and Resources:

• Dr. Al's new website - RareCounseling.com
• Sean's Article: Simple Questions Help Me Keep Life With FA in Perspective

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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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 & Kai

Links and Resources:

• Dr Gretchen
• Instagram
• Facebook
• YouTube
• The MSing Link Wellness Program
• The MSing Link Podcast
• Book Info
• 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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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 Caruso

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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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 Guy

Links and Resources:

• James Miller's Book - Life Lessons: You Are The Expert On Your Life | A Workbook
• Noah's Letter to the President of Auburn University
• Auburn for all: Noah Griffith adevocates for accessible athletics experiences

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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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 Science
• Heidi Behr, LCSW, MSW, MPH

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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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 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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.

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.

Links and Resources:

• Bishins Publishing
• Ehlers-Danlos Society

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 change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos aretrademarks of Reata Pharmaceuticals, Inc.

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 is to develop innovative therapies that change patients’ lives for the better. For more information about SKYCLARYS, visit: Skyclarys.com

©2023 Reata Pharmaceuticals, Inc. All rights reserved. SKYCLARYS, REATA, and their logos are trademarks of Reata Pharmaceuticals, Inc.