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.
On episode 95 of Beyond Labels & Limitations, JOHN GRAYBILL shares his new job, what is going on with him physically and how trusting that everything is unfolding as it should has changed him. ________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com ________________ "Desire to Inspire" TKG
On Episode 94 of Beyond Labels & Limitations, John shares a statistic that we have 60-80 thousand thoughts a day, 95% of the thoughts are repetitive, and 80% are negative. One morning, John woke up and noticed thoughts flooding his head. Instead of just believing the thoughts, which is what he usually did, John just watched them. What he noticed was that he had a choice in either purchasing the thought, by thinking more about the thought, or discarding it by simply watching it and letting it go. In watching the thoughts, John was able to feel lighter and more energized mentally. This was how he discovered how to get his mental power back. ___________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com ___________________ TKG "Desire to Inspire"
On episode 93 of Beyond Labels & Limitations, John Graybill shares an insight he had while writing. The insight is into being vulnerable and how that vulnerability led to avoidance. It was from avoidance that he discovered he wasn't accepting his diagnosis. ------------------------------ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com --------------------------- "Desire to Inspire" TKG
On episode 92 of Beyond Labels & Limitations, JOHN GRAYBILL shares where he's been all summer, what "accident" he had and how he is moving forward with it. _________________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com _________________________ "Desire to Inspire" TrishaKG
On episode 91 of Beyond Labels & Limitations, John Graybill shares the battle that takes place within his mind after a fall and how that battle determines his actions going forward. John also shares what he got from volunteering at his daughters elementary school. ___________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com __________________ "Desire to Inspire" TKG
On episode 90 of Beyond Labels & Limitations, John Graybill wishes some very important people in his life a happy birthday and shares a fall he had while getting up from the toilet. _________________________ Connect with John YouTube Channel Website Email: BLLjenjohn@gmail.com _________________________ "Desire to Inspire" TKG
On episode 89 of Beyond Labels & Limitations, John Graybill shares how he physically just got over his last fall, in terms of bumps and bruises, only to have another fall today. John shares the importance of not allowing the situations in life to bring you down but rather to keep going no matter how small a step you take, don't give up. ________________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com ________________________ "Desire to Inspire" TKG
On episode 88 of Beyond Labels & Limitations, John Graybill shares what his day looks like. John is ambulatory, 44 years old, been living with the diagnosis for 27 years but the first signs of weakness showed up 33 years ago at the age of 12, and he hasn't worked since 2006 (16 years ago). This podcast is to show what your life could look like, if you have LGMD, but your life could also be better in terms of strength, depending on what type of LGMD you have and the mutations. So, use this podcast as a rough outline of what your life could be like if you were diagnosed at 17 with LGMD2A/R1. ____________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com ____________________ "Desire to Inspire" TKG
On episode 87 of Beyond Labels & Limitations, John Graybill shares the body changes he is currently experiencing, his daughter skiing for the first time and how he was alone for 13 hours. _____________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com _____________________ "Desire to Inspire" TKG
On episode 86 of Beyond Labels & Limitations, John Graybill shares how fatigue comes on for him and how he handles it now. John also looks at how the mind adds meaning to everything that happens and that by not adding meaning to events you can free yourself from suffering. _________________________ Social Media: Website YouTube Channel Email: BLLjenjohn@gmail.com ________________________ "Desire to Inspire" TKG
On episode 85 of Beyond Labels & Limitations, John Graybill asks the question, "Am I living life or being lived by the stories in life?" This question should be asked daily when dealing with events taking place in life. John has found that an event takes place, then there's an interpretation/story/meaning given to that event and then finally the person lives their life from the meaning they gave to the event. Living life this way gives rise to not truly living life but being lived from the stories. These stories can and usually are false but we don't know that until we look into them. John has become tired of living his life from the perspective/stories/meanings he gave himself when he was in 7th grade. And he is having a "Midlife Realization" that life doesn't need to continue on this way. Basically the things that happen in life don't mean anything, they're just events taking place. It's when meaning is given to the event that they impact a person. __________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com _________________ "Desire to Inspire" TKG
On episode 84 of Beyond Labels & Limitations, John Graybill shares how his cat tried to kill him with a Karate Kid style move of sweeping the leg. John shares how he felt during and after the fall and how the world can seem to be coming down on you. But, all was not lost as a little boy rollerskating showed him one important lesson. _________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com _________________ "Desire to Inspire" TKG
On episode 83 of Beyond Labels & Limitations, John Graybill talks about how tired he was this past week, a five year old pushed him down and how his daughter predicted the fall 2 days prior. _____________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com _____________________ "Desire to Inspire" TKG
On episode 82 of Beyond Labels & Limitations, John Graybill shared how just when he thought he was mature, at 44, his button pusher showed up, sending him back to his 12 year old self. It's hard to see the lessons the button pusher show us when it's happening. The important part however is not what they say but rather how it effects you and why are you effected by it. John gives examples from his life, and within the past week, where situations came up and he reacted. What John discovered was how important it was to look at the thoughts that had arisen and questioned them. By not giving in to the power of reaction, through questioning and observing, he saw that the reaction had less power over him. ____________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com _____________________ "Desire to Inspire" TKG
On episode 81 of Beyond Labels & Limitations, John Graybill shares an online meditation retreat he attended and how aspects of himself came out. Also, John shares how the saying "Time heals all wounds" is not true. The name of the retreat John briefly spoke about in the beginning of the podcast is Goenka. Here is the link: Goenka Meditation Retreat Website ______________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com _______________________ "Desire to Inspire" TKG
On episode 80 of Beyond Labels & Limitations, John Graybill shares his daughters 6th birthday and what his daughter's friend shared with him that move him, how John's mind works in the morning, and a dream John had. The YouTube channel where John talked about Shane and SMA is Squirmy and Grubs: Squirmy and Grubs __________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com ___________________ "Desire to Inspire" TKG
On episode 79 of Beyond Labels & Limitations, John Graybill shares how he went from a "get rid of this disease" mentality to "How do I live with this." It wasn't easy at first questioning his beliefs/thoughts but once he saw them for what they were, self-limiting, he set out to dismantle their power over him. ____________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com _____________________ "Desire to Inspire" TKG
On episode 78 of Beyond Labels & Limitations, John Graybill shares his experience with Covid. He breaks down the first week of his symptoms. After a week John was starting to feel like his old self. One important part for John was to take care of his immune system by taking Vitamin D3, Vitamin C, Zine, Quercitin, NAC. After a few days of taking these supplements John felt better. Now, could the supplements have helped him faster? It's hard to say whether they did or if it was something else. In any case, taking care of your body before/and especially when your sick is important. This was merely John's experience with Covid and it may not be yours. _______________________ Connect with John: YouTube Website Email: BLLjenjohn@gmail.com ________________________ "Desire to Inspire" TKG
On this final episode of season 2 of Beyond Labels & Limitations, John Graybill shares what he has learned from himself over the past year while living with Limb Girdle Muscular Dystrophy. All was not bad. In fact, when John can create some distance from his "sufferings" is when he learns the most from muscular dystrophy. Merry Christmas and Happy Holidays! _____________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com _______________________ "Desire to Inspire" TKG
On episode 76 of Beyond Labels & Limitations, John Graybill shares what having a mobility scooter has done for him, what beliefs he had about having the scooter, and a play he went to with his family. There are lessons in everything and it's up to us to find them. _____________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com ______________________ "Desire to Inspire" TKG
On episode 75 of Beyond Labels & Limitations, John Graybill talks about self esteem and living with a disease like muscular dystrophy. ________________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com _________________________ "Desire to Inspire" TKG
On episode 74 of Beyond Labels & Limitations, John Graybill shares what it is like to be sick and what he got from his Thanksgiving get together. _____________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com ______________________ "Desire to Inspire" TKG
On episode 73 of Beyond Labels & Limitations, John Graybill shares his daughters success climbing a rock wall, how that inspired him to get up from the toilet after a long day sitting in a scooter and what can you be thankful for with having LGMD. ___________________________ Follow John: Website YouTube Channel Email: BLLjenjohn@gmail.com ___________________________ "Desire to Inspire" TKG
On episode 72 of Beyond Labels & Limitations, John Graybill shares a fall he had while getting up from the toilet, a book he is re-reading called, "Untethered Soul", and finally, letting go and moving on. _________________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com __________________________ "Desire to Inspire" TKG
On episode 71 of Beyond Labels & Limitations, John Graybill talks with Elijah Stacy about his life with Duchenne Muscular Dystrophy. Contact Elijah Stacy: Non-Profit Website Elijah Stacy's Personal Site To purchase A Small IF _______________________ Connect with John: Website YouTube Page Email: BLLjenjohn@gmail.com _______________________ "Desire to Inspire" TKG
On episode 70 of Beyond Labels & Limitations, John Graybill shares a recent fall he had while walking from the bathroom, a halloween party he went to and how LGMD is effecting sleep. ______________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com ______________________ "Desire to Inspire" TKG
On episode 69 of Beyond Labels & Limitations, John Graybill looks at what his mind tells him, why does he blindly believe the stories it tells him and how he can go beyond the mind chatter. ___________________________ Connect with John: Website YouTube Channel Email: BLLjenjohn@gmail.com ___________________________ "Desire to Inspire" TKG
On episode 68 of Beyond Labels & Limitations, John Graybill shares his desire to just get up and move-similar to how Forest Gump broke free from his leg braces, a talk he had with his friend Scott about how people in the CrossFit arena get better and lastly the trusting mindset one needs to achieve in this life. ______________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com _______________________ "Desire to Inspire" TKG
On episode 67 of Beyond Labels & Limitations, John Graybill talks about his latest blood test results, how using a belt has helped him keep his independence and how he deals with struggles. _________________________ Connect with John: YouTube Channel Website Email: BLLjenjohn@gmail.com __________________________ "Desire to Inspire" TKG
On episode 66 of Beyond Labels & Limitations, John Graybill shares his recent trip to Estes Park with his family, what struggles he encountered there and how a frustrated man who honked at him revealed something. Lastly, John shares a dream he had at the end. _____________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 65 of Beyond Labels & Limitations, John Graybill talks about the LGMD Awareness Day which is every September 30th. This day is important in spreading awareness about LGMD. Go to LGMD Awareness Foundation to learn more about LGMD. John also shares some physical struggles he's had over the past week and his upcoming blood work. There are 3 tests he asks for and they are: CPK, Vit D., cCRP or CRP. _______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ________________________________ "Desire to Inspire" TKG
On episode 64 of Beyond Labels & Limitations, John Graybill shares his take away from the 2021 International LGMD Conference, which was put on by the Speak Foundation. If you missed the conference you can view all 4 days at this link: 2021 LGMD International Conference John also shares his latest supplement, Garden of Life Company. Do your own research to see if this supplement will be of benefit to you. Lastly, John shares a tip for neck stiffness. _________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com __________________________ "Desire to Inspire" TKG
On episode 63 of Beyond Labels & Limitations, John Graybill talks about a few things. First of all, the upcoming 2021 LGMD International Conference. This is huge and is put on by The Speak Foundation. If you would like to attend please go to: The Speak Foundation National LGMD Conference The conference starts Friday, September 17 2021 and ends Monday, September 20, 2021. John also shares about a pinched nerve, how his mind goes back into judgment and comparing. Lastly, John shares how he feels LGMD is like the game Jenga. _____________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 62 of Beyond Labels & Limitations, John Graybill looks back on his health from March 16, 2020 to now and what has changed. John has done a podcast on changes to his health that you can hear on episodes 5, 19 and 37. In each of these episodes, John shares what struggles he has going on and then looks back to see how long he has dealt with them. The reason he does this is to track the disease progression. _____________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 61 of Beyond Labels & Limitations, John Graybill shares an almost accident he had while driving in a parking lot. This got John to thinking about is it time to stop driving. John looks at the first signs of driving becoming too difficult to do. He also shares how the meaning he gives to things/events in his life is what he really reacts to. By giving up the meaning, or at least examining it, you begin to see your relationship with these things/events in your life more clearly. ___________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ____________________________ "Desire to Inspire" TKG
On episode 60 of Beyond Labels & Limitations, John Graybill shares how he struggles with limb girdle muscular dystrophy. The struggle wasn't always the same over 26 years. When John was younger he believed himself to be the physical John. Naturally, whenever he lost an ability, he took it hard, and he tried to get that physical ability back. It wasn't until John heard Wayne Dyer speak of an idea that "we are all spiritual beings having a human experience" did John start the shift. Now, John sees that whenever he gets down and the struggles of muscular dystrophy are heavy, it's because he has gone back into the belief that he is a physical being. This self inquiry is a life-long one but one we need to make if we are to go beyond muscular dystrophy. Keep asking yourself, "Who am I" and you'll find out who you really are. _________________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com __________________________________ "Desire to Inspire" TKG
On episode 59 of Beyond Labels & Limitations, John Graybill shares how a negative thought spiraled into more negative thoughts about how his life is terrible. This isn't something new to John's life but rather a constant battle he has endured for close to 26 years. Everybody has these days but how do you get out of them? _____________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 58 of Beyond Labels & Limitations, John Graybill shares how traveling to his parents house brought up challenges he hadn't encountered on previous trips there. Why your friend, child or partner doesn't want to go new places or even places visited before is probably due to it's getting more challenging for them to be independent. John didn't like having to have his dad help him with going up stairs, going down the stairs, lifting him off the toilet, helping him get to the toilet, sitting in a chair. All of these activities John could somewhat do before but since the disease is weakening him John has to rely on others for a lot. Here are the 4 part stretching videos: LGMD Stretching Video Part 1 LGMD Stretching Video Part 2 LGMD Stretching Video Part 3 LGMD Stretching Video Part 4 ____________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com _____________________________ "Desire to Inspire" TKG
On episode 57 of Beyond Labels & Limitations, John Graybill talks about how he sees his life with LGMD. John was diagnosed in 1995 at the age of 17. He thought his life was over when the doctors told him he had muscular dystrophy. John gave up on life. When John met Wayne Dyer, his perspective on life changed. He attended college, where he studied psychology, and started to look at how he saw himself with this disease. Ultimately, over time John began to see that this disease was here to teach him and that it was up to him to see the lessons if he wanted to live a happy life. _________________________ Connect with John: Visit the Website Subscribe on YouTube Email: blljenjohn@gmail.com __________________________ "Desire to Inspire" TKG
On episode 56 of Beyond Labels & Limitations, John Graybill shares some of the things that suck and have sucked regarding being diagnosed with a physical disability such as Limb Girdle Muscular Dystrophy. John looks at areas of dating, walking, getting up from a chair, climbing stairs, rolling over in bed, being dependent on others to help you and what the future holds for you. John gives examples in these areas where he got stuck and solutions on how to get out of them. What John learned was that looking at what sucks in your life is not the way to live an enjoyable one. Yes life can suck but don't get stuck there, tomorrow is another day. ______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
In episode 55 of Beyond Labels & Limitations, John Graybill shares what he has learned over the course of 26 years being diagnosed with LGMD. 1. Don't believe everything I think 2. Accept constant change 3. A belief can be powerful when given enough attention 4. Appreciate what I have while I have it 5. Let go of control ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 54 of Beyond Labels & Limitations, John Graybill talks about finding beauty in a disease that takes away your physical abilities. It's not easy to find the lessons in your situations especially when you think your life should be another way, but it is a choice you must make if you want your life to be one that is enjoyable. John tells you the life he lived before he realized this and how it has brought happiness into his life. ______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 53 of Beyond Labels & Limitations, John Graybill shares how not watching what you eat can upset your digestive system. He also shares what the symptoms are and how he dealt with them. ______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com _______________________________ "Desire to Inspire" TKG
On episode 52 of Beyond Labels & Limitations, John Graybill shares what keeps him motivated to not give up. He shares how a 3 year old helped him see more clearly. The mindset is a big determining factor in the course of your life regardless of having LGMD or not. One thing to keep in mind is that if you think you can/cannot, you're right about it. How do you prevent your mind from ruining your life with LGMD? John shares what works for him and it's not a "okay, I did that and now move on." No. The mindset and working with negative thoughts is a daily ordeal. ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 51 of "Beyond Labels & Limitations", John Graybill looks at the question, "What do you do for a living". John has been asked this question for over 15 years, since he's been on disability, and how this question has impacted him. From feeling ashamed and embarrassed to making a difference in the world, John has felt both sides when someone asked him this question. But, the important aspect is how it showed John where he was at in his life. Enjoying the journey is key, not some destination where you think life will be perfect once you have all that you wanted. John's mantra is, "I don't have to be physically healed in order to enjoy my life." This is something he has to remind himself from time to time. ______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 50 of "Beyond Labels & Limitations," John Graybill talks about how his wife and daughter leaving for a camping trip helped him examine his life. Being around people all the time doesn't allow for you to be alone with your thoughts, and some of the thoughts aren't positive. So, when Darcie and Chloe leave for a few days, this is the time John gets to look into how life is unfolding for him. This trip around, the idea of being grateful came up. "Why can't I be grateful for what I have?" John looks at some examples in his life where he thought life would be better once he achieved his goal only to find short-lived pleasure. ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 49 of Beyond Labels & Limitations, John Graybill talks with Donavon Decker, who has LGMD2D. Donavon comes from a family of 8 with 5 of them being diagnosed with LGMD2D. His unaffected sister later had 2 children who were diagnosed with LGMD2I. Donavon also shares how the LGMD2D population were the first to participate in gene therapies, and he shares how the trial he was in showed promise. His sister, June Burney, who also has LGMD2D, was a part of a study in 2015 using the AAV-One time treatment. Donavon shares how his sister improved while in the study and up to 1.5 years after the study was concluded. Unfortunately, she began to lose what she gained shortly afterwards. ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 48 of Beyond Labels & Limitations, John Graybill shares what his whining cat showed him about his relationship with his 5 year old daughter and himself. ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 47 of Beyond Labels & Limitations, John Graybill talks with Brad Williams about his life with LGMD2B/R2. Brad shares how he waited nearly 18 years to find out what he had. Brad was a figure skater, runner, very athletic in his youth but around the age of 18 he noticed he couldn't stand on his toes. The gene for LGMD2B hadn't been discovered yet, hence he had to wait until it was. Brad also shares how important it is to be a part of registries. In order for researchers to figure out what's going on with you, they need to know you exist. The Jain Foundation is one registry for people with LGMD2B. But, the Jain Foundation can also help those who don't have a specific diagnosis get one. Here's the Jain Foundation link: The Jain Foundation Here's Brad William's YouTube Page: Brad Williams YouTube Channel Here's the Speak Foundations Link to sign up for their registry: The Speak Foundation ______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 46 of Beyond Labels & Limitations, John Graybill shares his experience of traveling to Abadiania, Brazil. It's in Abadiania where John of God's Healing Center, Casa De Dom Inacio, is located. This episode will be difficult for those who are deeply rooted in the Bible teachings. An open mind will be necessary for listening to this. John also wants to make a point that he is not trying to convert anyone but merely sharing his reason and experiences for traveling to Brazil. John also didn't put much stock into healing of the emotions, mental and spiritual but rather thought only of healing the physical. He was in for an eye opening experience. This is also where John met his wife. ______________________________ Connect with John: Subscribe on YouTube Visit the Website Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
On episode 45 of Beyond Labels & Limitations, John Graybill talks with author Robert Schwartz about his book, "Your Souls Plan". In this podcast, Rob shares how we planned our life before being born and how this plan is the reason for us coming into human form. Rob is one of those people who helped John shift his perspective from a "poor me" to a "this is for my higher good" perspective after reading "Your Souls Plan". By seeing your life as pre-planned, all the struggles in your life are approached from a place of, "How may I learn from this". Robert Schwartz's website: Your Souls Plan (This may be extremely difficult for some to listen to so an open mind is necessary.) ______________________________ Connect with John: Visit the Website Subscribe on YouTube Email: BLLjenjohn@gmail.com ______________________________ "Desire to Inspire" TKG
© 2020-2025 Ivy Podcast Discovery LLC
