Shows
Beyond Labels and LimitationsEpisode 022: The Speak Foundation with Kathryn BryantJen Ives and John Graybill talk with Kathryn Bryant of the Speak Foundation. Kathryn shares her limb girdle muscular dystrophy type 2I and how this disease saved her life. Kathryn has gone on to form the non-profit organization, from winning a contest, called "The Speak Foundation". The organization's mission is to improve the quality of life for those living with muscular dystrophy. Kathryn shares how important it is for those living with muscular dystrophy to be a voice in their future. This is what the Speak Foundation is doing. The Speak Foundation has a "Patient Network" that they would...2020-11-0245 minBeyond Labels and LimitationsEpisode 021: FriendsIn episode 21, Jen Ives and John Graybill talk about friends. How did they make friends while having limb girdle muscular dystrophy? Did their muscular dystrophy prevent them from hanging out with friends, going to a friends house? What impact did their disease have on the friendship? Jen and John ask an important question regarding children who have muscular dystrophy and how do they make friends? _______________________________ Connect with Jen and John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ________________________________ "Desire to Inspire" TKG2020-10-1930 minBeyond Labels and LimitationsEpisode 020: When it's time to get a chairJen Ives and John Graybill talk about their experiences with transitioning to a mobility scooter and power chair. Jen shares how she got around with her scooter and the setup she had installed in her 4-Runner. John received a scooter from Clifton Lewis, "CRL Good Life Foundation" and how he didn't even want it at first. Jen and John share with you the thinking process and challenges they encountered when it was time to transition and how those decisions have given them freedom. Clifton R. Lewis Good Life Foundation ______________________________ Connect with Jen and...2020-10-0535 minBeyond Labels and LimitationsEpisode 019: Follow-up on Physical HealthJen Ives and John Graybill give an update on their health from a podcast they did 6 months ago, March 2020. In this podcast, they talk about what aliments they had back then and if they have gone away or were the start of their physical health decline. ______________________________ Connect with Jen and John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG2020-09-2130 minBeyond Labels and LimitationsEpisode 018: Struggling and FrustrationJen Ives and John Graybill talk about what's bothering them. John shares his frustration with struggling to get up from a chair, walking, his mind telling him stories of "it not working out". How does John and Jen deal with life when these situations come up? And they do come up more often than they think. ______________________________ Connect with Jen and John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG2020-09-0742 minBeyond Labels and LimitationsEpisode 016: FDA Listening SessionJen Ives and John Graybill talk with Brad Williams, of the Jain Foundation, about the upcoming FDA Listening Session for LGMD. This is the first ever listening session in which the FDA will listen to LGMD individuals about how their type of LGMD has impacted their life. The session is set for October 20, 2020. Jen and John ask Brad questions like, how often dose the FDA listen to patients, what is a listening session and why is it important? FDA Listening Session Brad William's YouTube Page ______________________________ Connect with Jen and...2020-08-1034 minBeyond Labels and LimitationsEpisode 015: Coming to TermsHow do you come to terms with a disease that takes away your physical abilities? Jen Ives and John C. Graybill II talk about their coming to terms and what that looked like early on. Jen embraced her diagnosis while John denied it. Eventually both came to an understanding that they are more than the physical being and that their life can be something wonderful! John brings up a concept coined by Victor Frankl in the book, "Mans search for meaning", called Delusion of Reprieve. Are we, those who have LGMD or any disease that robs you...2020-07-2746 minBeyond Labels and LimitationsEpisode 014: Navigating the BedJen Ives and John Graybill talk about living with limb girdle muscular dystrophy and how it relates to moving around in bed. What type of bed is best, sheets, bed height? How do you sleep at night and what can you do to ensure you sleep better? Jen and John talk about their experiences and how sleeping over the years has changed. Jen shares how her Flex-A-Bed has helped her maintain her independence while John enjoys his Sleep Number bed. Both agree that the Pillow Top beds are not a great choice when you've become weaker and...2020-07-1332 minBeyond Labels and LimitationsEpisode 013: Maintaining WeightHow do you balance eating what you love and staying healthy? It's a difficult task when in the end, if there's no cure/treatment, you'll end up losing what you have anyway. John Graybill and Jen Ives share what it is like eating the way they do and the struggles they've encountered while trying to maintain their weight. John was told by his neurologist years ago the importance of maintaining his weight. When you get older, weaker, the weight you now carry will make mobility harder for you and those who take care of you. So be careful about...2020-06-2937 minBeyond Labels and LimitationsEpisode 012: Finding SpiritualityJen Ives and John Graybill talk about how God/Spirituality came to them. Jen shares how her dysfunctional upbringing helped her turn to God. John shares how Buddhist practices helped him question the events in his life and look at life from a different perspective. Jen also shares a verse from the Bible and a prayer at the end. ______________________________ Connect with Jen and John: Subscribe on YouTube Visit Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG2020-06-1538 minBeyond Labels and LimitationsEpisode 011: What do you want to be when you grow upJen Ives and John Graybill talk about what they wanted to be when they grew up. How did they attend college with their disability? Could they go back to school now in their current physical condition? What motivates you to want to do more with your life than just work? Jen and John want you to look at where you are in your life and explore what options are there for you. What do you want out of your life? ______________________________ Connect with the show: Visit Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________2020-06-0130 min