5 episodes

Welcome to the podcast for Beyond Labels & Limitations.

Jen & John talk about living a life with Muscular Dystrophy

BL&L, started as an organization to raise money dedicated exclusively to Limb-Girdle Muscular Dystrophy 2A (LGMD2A) and to educate on the disease course and associated struggles of LGMD2A, as recounted through my personal experiences.

Beyond Labels and Limitations Jen Ives & John Graybill

    • Self-Improvement

Welcome to the podcast for Beyond Labels & Limitations.

Jen & John talk about living a life with Muscular Dystrophy

BL&L, started as an organization to raise money dedicated exclusively to Limb-Girdle Muscular Dystrophy 2A (LGMD2A) and to educate on the disease course and associated struggles of LGMD2A, as recounted through my personal experiences.

    Episode 005: Physical Health Check-in

    Episode 005: Physical Health Check-in

    Jen and John share their physical struggles today. The goal is to look back in six months, September 2020, and see if these struggles were part of the disease progression or something else.

    • 26 min
    Episode 004: A Spouse’s Perspective Part 1

    Episode 004: A Spouse’s Perspective Part 1

    What is it like caring for someone who has limb girdle muscular dystrophy when you are the husband and do not have the disease? We explore what a husband does/feels while caring for his wife.

    • 38 min
    Episode 003: Dealing with Falls

    Episode 003: Dealing with Falls

    In this episode, Jen and John talk about falling and the effects it has on them. They also share ways to minimize falling and a few takeaways to help you, if you find yourself in these situations. 
    ___
    For more information and how to connect with Jen and John, please visit us at:

    Beyond Labels & Limitations website:
    www.BeyondLabelsLimitations.com
    By Email:
    BLLjenjohn@gmail.com
    John Graybill's YouTube Channel 
    ___
    “Desire to Inspire” - TKG

    • 46 min
    Episode 002: First sign something wasn’t right and getting diagnosed

    Episode 002: First sign something wasn’t right and getting diagnosed

    Jen and John talk about when they noticed the first signs that something wasn’t right with them, how it was interpreted by their peers, and eventually getting diagnosed.

    They also share on this episode some advice for those of you with the diagnosis and those of you who haven’t gotten their exact diagnosis yet. 

    FREE patient programs to get a genetic diagnosis are:
    Invitae Program: https://www.invitae.com/en/sponsored-testing/ Perkin Elmer Lantern Program: https://www.perkinelmergenomics.com/lanternproject/ ___
    For more information and how to connect with Jen and John, please visit us at:

    Beyond Labels & Limitations website:
    www.BeyondLabelsLimitations.com
    By Email:
    BLLjenjohn@gmail.com
    John Graybill's YouTube Channel 
    ___
    “Desire to Inspire” - TKG

    • 36 min
    Episode 001: Introducing Jen and John

    Episode 001: Introducing Jen and John

    Jen and John give a brief introduction into who they are and what they want to accomplish with this podcast. 
    ___
    For more information and how to connect with Jen and John, please visit us at:  
    Beyond Labels & Limitations website: www.BeyondLabelsLimitations.com
    Email:
    BLLjenjohn@gmail.com
    John Graybill's YouTube Channel 
    ___
    “Desire to Inspire” - TKG

    • 3 min

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