Two Disabled Dudes

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 hear about the challenges of living with rare disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

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 disease, share the stories and raise awareness of LEMS to the world. Listen wherever you get your podcasts! https://www.lemsaware.com/podcasts

A guiding principle Sean has adopted from his employer applies to every area of life - Respect, Appreciate, and Value Everyone, a.k.a RAVE.

As a Fortune 100 Best Companies to Work For, Nugget Markets, Inc. is careful with the culture they foster and honor. In this episode, Sean shares a glimpse into this particular core value that is worth everyone’s consideration.

A couple of mentions in Episode 199:

• Episode 040 with Arash Bayatmakou
• CanDo’s Keto Krisp. Listen to ep198 for a discount code from the Founder - Adam Bremen.

Adam Bremen is the co-founder of CanDo, the maker of the #1 Keto bar on Amazon, Keto Krisp. Despite living with Cerebral Palsy and having experienced much hardship and loss in his life, Adam is one of the most positive and genuine people we've ever had on the show. The success of his brand is not surprising given his outlook on life and his support for others.

We've tried Keto Krisp and we're fans. You can try the delicious bars too, by visiting tastecando.com and entering ADAMCANDO at checkout for your discount.

Adam credits his friend Jesse Billauer for inspiring him to get in shape. Check out Jesse's adaptive surfing and other events at liferollson.org.

Rare Disease is ever present and relentless. Sometimes we wish we could push the pause button and live an able bodied life for a little while.

Kendall harvey writes about this struggle in her recent column for Friedreich's Ataxia News.  The article is called FA Progression No Longer Has Total Contr Olver My Life and she talks about it with The Dudes.

Follow Kendall on Instagram as she chases her 9th fundraising title for rideATAXIA Dallas. 

Sean is overwhelmed at the moment.  He has too much on his plate and life is chaotic.  Kyle's plate is pretty full too.  However there's always something to talk about.

Listen as the dudes talk about being over subscribed and possible strategies to avoid this situation.

The biggest obstacle to treating patients with overlooked diseases isn’t finding potential treatments — it’s funding them.

Join the Dudes as they get a glimpse into the world of Cryptocurrency and discover how patient communities can have more control of research direction as they chat with Vibe Bio CEO, Alok Tayi.

Sean loves to play the game Risk online with people he doesn't know.  When someone attacks him, rather than focusing on trying to win the game, his strategy is sidetracked by the need to destroy this person who injured him.  Until one day he realized it was better to just play the game and not take attacks personally.  This concept relates to many situations for The Dudes.  Listen and enjoy this deep conversation :-)

This episode was brought to you in part by Horizon Therapeutics.

In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

Kyle's Wheelchair was damaged on an American Airlines flight in April.  It is now September and it is just now getting resolved.  

While working his way through the situation, Kyle phoned a friend, Mary Caruso who provided advice and encouragement about the process and how to conduct oneself while advocating for what you need.  Ultimately Mary's advice lead to a reimbursement check from the airline.

You gotta know your rights and you gotta believe that you are just as important as the person next to you.  Take it from Mary.

This episode was brought to you in part by Horizon Therapeutics.

In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.

In this week's round of Guess What, both dudes came out winners.  Kyle won because Sean gave it away.  Sean won on a technicality.  

Then, Kyle introduced a topic based on his recent cycling adventure: We are constantly faced with decisions that affect the outcome of our lives.  Our response to these decisions is often determined by the priorities we set for ourselves either consciously or unconsciously.  

Through their discussion, the Dudes challenge each other to be intentional about setting priorities to help make decisions that serve those priorities.

In thank you notes, Sean thanks Canva for their support of Non Profits. Kyle thanks Chris Farley for all the laughs.

Enjoy!

This episode is brought to you in part by Horizon Therapeutics.

In 2017, Horizon Therapeutics launched the #RAREis program designed to elevate the voices, faces and experiences of people living with rare diseases, as well as highlight programs and resources tailored to the rare disease community. Visit rareiscommunity.com for more info.