Beyond Labels and Limitations

How 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 of being physical, under this delusion?

We must look at our life and examine it moment by moment, as Jen says, and realize we are not our thoughts, feelings. We are more than that.

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Connect with Jen and John:

• Visit Website
• Subscribe on YouTube
• Email: [email protected]

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"Desire to Inspire" TKG

Jen 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 unable to turn over in bed.

The beds Jen and John sleep on:

• Flex a bed
• Sleep Number

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Connect with Jen and John:

• Subscribe on YouTube
• Visit Website
• Email: [email protected]

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"Desire to Inspire" TKG

How 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 what you eat. But, again how do you enjoy life without having to sacrifice what you eat? It's a difficult choice but one that has to be examined.

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Connect with Jen and John:

• Subscribe on YouTube
• Visit Website
• Email: [email protected]

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"Desire to Inspire" TKG

Jen 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.

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Connect with Jen and John:

• Subscribe on YouTube
• Visit Website
• Email: [email protected]

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"Desire to Inspire" TKG

Jen 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?

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Connect with the show:

• Visit Website
• Subscribe on YouTube
• Email: [email protected]

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"Desire to Inspire" TKG

Jen and John talk with their friend, Clifton Lewis, about living alone and what actions one should take to live safely. Oh, and Cliff is also raising 2 kids under the age of 6 by himself! Cliff shares some tips that will help you if you find yourself in this situation.

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Connect with the show:

• Visit website
• Subscribe on YouTube
• Email: [email protected]

Connect with Clifton Lewis:

• Connect on Instagram @crlgoodlife
• Visit website
• Email: [email protected]

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"Desire to Inspire" TKG

Jen and John examine situations in their life as all or nothing. Is life with muscular dystrophy an all or nothing approach? Jen shares how her recent falls have helped her see life from a different perspective. John shares his recent struggles and how he looks at them. At the end of the podcast John shares a Taoist Farmer story that you're gonna want to hear.

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For more information and how to connect with Jen and John, please visit us at:

Website:Beyond Labels & Limitations

YouTube: YouTube Channel

Email: [email protected]

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"Desire to Inspire" TKG

Jen and John talk with Cory Lee, a well traveled young man living with SMA. Cory Lee has traveled to 37 countries, 7 continents, and all before the age of 30! Cory shares his experience with flying and booking hotels.

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Cory's Website: Curbfreewithcorylee.com

Cory's Book: Let's Explore with Cor Cor

John's Website: Beyond Labels & Limitations

John's YouTube page: YouTube

Email: [email protected]

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"Desire to Inspire" TKG

What's it like raising a child while you have a disability? Jen and John share their experience with raising a boy and a girl.

John's YouTube Page: YouTube

Website: BL&L

Email: [email protected]

"Desire to Inspire" TKG

Jen and John share some of their personal dating stories. They'll also talk about what lead them to their spouse.

Check-In: discuss coronavirus toll and John's fall

Topic: Dating with a Disability. John share's a couple dating experiences he's had and what he got from them.

Take Away:

John's-Love yourself first. Make a list of the "Must Haves" and "Must not haves" when it comes to what you want in a partner.

Jen's-Invest in yourself by getting clear and honest with who you really are. Not all dates are created equal. If the relationship is not real, what's the point in continuing it.

BL&L: Beyond Labels & Limitations

John's YouTube Page: John's YouTube

Email address: [email protected]

Tony Robbins Love and Passion: Tony Robbins Love and Passion

"Desire to Inspire" TKG