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PODCAST

Two Disabled Dudes

The 2DD podcast is about setting sights beyond the challenges in your life and dreaming big, making a plan, and then executing like mad. You are guaranteed an emotional rollercoaster, and practical thoughts that you can apply to your life with this podcast. Hosts Sean and Kyle are both affected by a rare disease called Friedreich’s ataxia (FA). FA affects their balance and coordination, significantly limiting their physical abilities. However both dudes have completed several long distance bike

education self-improvement

All Episodes

29:23

142 - Rare Disease in India

Two Disabled Dudes ·

2021/04/04

How do we build an effective Global Rare Disease community? It all starts with sharing stories and ideas. Join the dudes as they hear Manish Gore's story about Alport Syndrome, and discuss the differences between the US and India and the Rare Disease World.

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37:24

141 - Rude or Cooperative?

Two Disabled Dudes ·

2021/03/28

A few weeks ago, Sean read an engaging article from the Huffington Post called How to Know if You're an Interrupter or a 'Cooperative Overlapper'. The discussion of this article lead to an exploration of issues on the endless video conference calls that have become a big part of our lives lately. Kyle still thinks the term 'Cooperative Overlapper' is just a made up term to make Sean feel better but you be the judge.

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37:39

140 - A Sister's Perspective on Bullying

Two Disabled Dudes ·

2021/03/20

We sent Shelley a 2DD 2021 Desk calendar. She sent back pictures of her brother. That sparked a heartfelt conversation about her family and some of the experiences in her life with her brother Jeff. Join us as Shelley shares her experiences - you may end up with a perspective that makes you a better person. Shelley Bowen is the Director of Family Services and Advocacy for the Barth Syndrome Foundation: barthsyndrome.org

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34:50

139 - Where The Hell Are The Instructions?

Two Disabled Dudes ·

2021/03/14

Sometimes we wish there was an instruction manual for life's transitions. How do we decide when it's time to make a transition to a walker or wheelchair, power chair, hand controls...Listen as the dudes discuss and search for answers. Sean's column; No Good Excuse, "The 'Right" Time Can Be a Moving Target With a Progressive Disease."

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28:49

138 - We Only Have One Life to Live

Two Disabled Dudes ·

2021/03/08

"There is real power in not caring what others think." Ben's Friends is an online social network for people with rare diseases. Ben Munoz started it after suffering an AVM in 2006 and undergoing multiple brain surgeries. During his recovery he was feeling alone and scared so he reached out to others to form Ben's Friends. Ben joins the dudes to impart his knowledge and wisdom from his years of leading Ben's Friends and the company he created.

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40:39

137 - Rare Disease Day Special with Psychologist Dr....

Two Disabled Dudes ·

2021/02/28

To honor Rare Disease Day, we invited our friend Dr. Al Freedman back on to talk about how people living with Rare Disease (like Kyle and Sean) can remain proud even if they are not proud of everything about themselves. Dr. Al says a big part of it is gratitude and focusing on your strengths. Listen to hear all the details including the strengths of his son Jack who has been living with SMA for 25 years. Reach out to Dr. Al at: freedmancounseling.com

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27:35

136 - When It Hits The Fan - Part 1

Two Disabled Dudes ·

2021/02/22

What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives.

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21:33

136 - When it Hits The Fan - Part 2

Two Disabled Dudes ·

2021/02/22

What you we do when things do not go as planned. Your life feels like it's falling apart, and you need to rebuild part if not all of your vision for your future. The dudes have a few thoughts on how to proceed based on the rebuilding they've had to do in their lives. **This is a 2 part episode so if you haven't listened to part 1, check it out.**

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37:02

135 - Goals Don't Accomplish Themselves

Two Disabled Dudes ·

2021/02/14

In the last couple episodes we talked about the importance of forming a vision for your future. This time we take it a step further with a few thoughts on how to put that vision into action.

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35:56

134 - Our Wants vs. Our Don't Wants

Two Disabled Dudes ·

2021/02/08

Last week we talked about the importance of creating a vision of what we want so we can work each day toward that goal. An important piece of forming that vision is thinking about the things we don't want to avoid the ruts that are going to keep us from our goals. Enjoy the conversation and don't forget to subscribe.

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39:56

133 - Season 5 Premiere - What do You Want out of Life?

Two Disabled Dudes ·

2021/01/31

Where do you want to live? How much money do you want to make? How big is your house gonna be? Car? Job? It's important to dream about these things but none of it is going to happen on accident. In this episode Sean and Kyle talk about what they want out of life and the importance of taking steps today toward those things. They also introduce a new segment for the show with their Top 5 Movies. Enjoy!

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52:07

132 - 2DD Forum with the XLH Network

Two Disabled Dudes ·

2021/01/03

Meaningful conversations with friends are what we love - and that's what we thoroughly enjoyed about our 2DD Virtual Forum with the XHL Network. Listen to our 4 panelists for perspectives on living with XLH that relate to any walk of life. If your organization is planning to engage your community in 2021 either live or virtually, the 2DD Forum may be a good fit. Check out an overview at twodisableddudes.com/forum and reach out to us at thedudes@twodisableddudes.com to discuss. Talk to you

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01:15:41

131 - 2DD Forum at Ultragenyx Rare Family Day

Two Disabled Dudes ·

2020/12/14

It is clear to these dudes that the patient is at the center of everything that happens at Ultragenyx Pharmaceutical. That's why we are proud to have moderated a panel at the virtual Ultragenyx Rare Family Day This Year. https://www.ultragenyx.com/

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41:46

130 - Season 4 Finale - More 2DD Grievances

Two Disabled Dudes ·

2020/11/30

We all know that Sean likes to complain, and apparently Kyle Does too. Listen to help The Dudes get a few things off their chest. They were a bit relieved after recording this episode and hopefully you will feel relieved after listening.

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38:20

She Created What She Needed - Effie Parks

Two Disabled Dudes ·

2020/11/23

Effie Parks immediately connected to rare disease podcasts when her son Ford was diagnosed with CTNNB1. However she soon caught up with all of the episodes and came to the end of her lifeline. So she created the thing that she needed the most. She connects with other rare disease parents and many others in the Rare Community through her incredible podcast Once Upon a Gene. Listen to this episode to get insight on the value of connecting to others.

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43:18

128 - Addressing Rare Disease Mental Health -...

Two Disabled Dudes ·

2020/11/15

In episode 123, The Dudes asked why we tend to pull away when things get hard such as with a Rare Disease Diagnosis or another life changing event. The discussion did not end with a clear answer so Sean and Kyle Reached out for some professional help. Enter Dr. Al. Albert Freedman, Ph.D. has a unique voice as a psychologist and the father of an adult son with a rare disease. He speaks at conferences nationally on challenges facing families of children with special health care needs, and provides

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33:45

127 - Does Disability Force Premature Decisions?

Two Disabled Dudes ·

2020/11/09

Kyle and Sean realize that the degenerative nature of Friedreich's ataxia (FA) has an impact on the timing of big decisions in their life. But does it cause them to jump into some things too quickly. Kyle thinks it caused him to get in over his head when he bought his first home. Is he doing it again? Listen as The Dudes wrestle with this topic.

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41:53

126 - I'm Fine, Thanks - Chris Doveton

Two Disabled Dudes ·

2020/10/30

Finding the strength to keep moving after a heart wrenching loss is a prime example of living life beyond circumstances. Chris Doveton and Anne are enjoying a loving marriage in the prime of their lives when Anne is diagnosed with a rare and fatal genetic disease. For ten years, Chris and Anne endure this terrible secret alone. After Anne's death, Chris, ravaged by crippling grief, realises that his survival depends upon him ridding himself of his stiff upper lip. He must learn to open his heart and

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41:19

125 - "I know you're drunk, buddy"

Two Disabled Dudes ·

2020/10/25

Sean tells yet another story of someone thinking he is drunk, but this time the guy gets a little aggressive. Listen to hear the whole story and Sean's interactions with the landscaping company that the guy works for.

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44:58

124 - Walk in My Shoes - A Journey With Cystinosis

Two Disabled Dudes ·

2020/10/18

Cystinosis is a rare disease that causes life altering damage to the kidneys, eyes, muscles, pancreas, and brain. Clint Moore's son, Chandler liver with the rare disease. That's why Clint walks 57 miles on 5/7 to raise funds and awareness. Listen as the dudes discuss some life principles and talk about Clint's moving documentary that tells his family's story. Visit the Cystinosis Research Network: https://cystinosis.org/ Watch the Documentary: https://youtu.be/YHnoBbbg4Ao

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