Two Disabled Dudes Podcast

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."

"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.

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

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.

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.**

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.

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.

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!

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 soon!

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/

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.

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.

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 consultation to health care & rare disease organizations, pharmaceutical companies, and schools. As a practicing psychologist in independent practice in the Philadelphia area,    Dr. Freedman has provided counseling services to children, adolescents, adults, and families for over 25 years. Dr. Freedman's 25-year-old son, Jack, lives with Spinal Muscular Atrophy. More About Dr. Al: https://www.freedmancounseling.com/albert-freedman-ph-d Dr. Al's practice: www.freedmancounseling.com

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.

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 cry. Saved from the depths of misery by life-saving therapy, he discovers a life beyond despair, rekindles his lapsed faith and finds love again. Join us for a heartfelt conversation with Chris Doveton. Learn more: chrisdoveton.com Get the book on Amazon.

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.

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

Anyone who has listened to this podcast before has heard The Dudes go on and on about the power of community and the importance of connecting to others.  So why is our first reaction to pull away when things get hard?  Denial?  Pride?  Self-preservation?  Fear?  Listen as the dudes try to break down this complex topic.  They probably need some professional help... This topic all started with a little column Sean wrote: https://friedreichsataxianews.com/2020/09/29/connecting-others-helps-us-move-forward/

Government programs such as Social Security provide essential services for people with disabilities.  But navigating through the bureaucracy can be a nightmare. That's why there are companies such as Allsup Disability Insurance Services and people like Mary Dale Walters - to help us make sense of it all!  Listen as she gives us a great start to the conversation and provides resources for where to find out more. https://www.allsup.com/  

Using our collective effort. participants in the rideATAXIA Global Challenge will power the team around the globe in 30 days.  During this time the team will be introducing all of us to the brilliant minds behind the effort to treat and cure Friedreich's Ataxia. Get more info and register at rideataxia.org/globalchallenge or join Team #CrankinWithKyle HERE. Join us on Strava to contribute to the goal of traveling around the globe! Cycling - https://www.strava.com/clubs/710903 Running - https://www.strava.com/clubs/617708 Any other activity via the activity log - https://rideataxia.org/files/GC-Activity-Log.pdf