Two Disabled Dudes - Living with Urgency
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 rides including “The World’s Toughest Bike Race” - Race Across America (RAAM). Their RAAM journey is the subject of an award winning documentary called The Ataxian. Kyle rode his trike to the top of the highest paved road in North America and Sean ran with the Olympic Torch. Join us, subscribe, and tell a friend!
Episodes
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:
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 tel...
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 tw...
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 - Co...
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 Effi...
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...
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.
...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 D...
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 pr...
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 ...
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 ...
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
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
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
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
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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
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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:
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.
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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 understandi...
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:
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