Podcasts about barby ingle

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Play Episode Listen Later Nov 29, 2021 11:16

In today's interview with Barby Ingle, we talk with you about her definition of stewardship. Barby also shares her top tips on making a dent in the universe. I also ask Barby about the legacy she wants to leave behind. Show Notes and Resources.

Barby Ingle - From Wheels To Heals: A Journey of Health, Healing and Overcoming

SAGE Mindset Podcast

Play Episode Listen Later Nov 23, 2021 32:22

Barby Ingle is President of International Pain Foundation (iPain), Amazon best-selling author, and Reality TV Personality sharing her powerful story about life-changing events that forced reflection and sprouts her journey from Wheels to Heals. Barby has an amazing story of triumph and healing after a car accident triggered an autoimmune response in her body that put her in a wheelchair for 7 years. She battled her way through those challenges and shares some great insights on today's show. To make it through her challenges she shares the importance of 5 key ideas. Stay organized. Advocate for yourself. Journal. Share your strengths. Drink more water! To connect directly with Barby, please visit http://barbyingle.com/

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Episode 1006: Develop Your Influence - Interview with Barby Ingle the Mental Cheerleader and Health Advocate - Part 3

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Play Episode Listen Later Nov 23, 2021 17:10

In today's interview with Barby Ingle, we talk with you about her definition of leadership. Barby also shares the reality of being on a reality TV show. I also ask Barby to share how her faith affects what she does as an advocate for health. Show Notes and Resources.

Episode 1001: Invest in Others - Interview with Barby Ingle the Mental Cheerleader and Health Advocate - Part 2

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Play Episode Listen Later Nov 15, 2021 23:47

In today's interview with Barby Ingle, we talk with you about what she does to help others become advocates for their own health. I also ask Barby about how she became an advocate for others health because of her own health journey. Barby also shares with you some of the good and bad that's come out of the pandemic when it comes to health care. Show Notes and Resources.

119: Friend Group Dynamics with Barby Ingle

Crappy Friends

Play Episode Listen Later Nov 10, 2021 37:46

What is it about friend groups that can be so complicated? Why are we so territorial sometimes? What happens when we like some in the group but not others? Barby Ingle shares her wisdom with the Ladies, as well as her personal experience with chronic pain and how it affects friendships.

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Episode 996: Invest in Yourself - Interview with Barby Ingle the Mental Cheerleader and Health Advocate - Part 1

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Play Episode Listen Later Nov 8, 2021 17:52

In today's interview with Barby Ingle, we talk with you about her history as a dance and cheer company owner to dealing with chronic pain. Barby also shares how this lead her to becoming a health advocate and mental cheerleader. Barby also talks about how her faith and her journey through chronic pain have affected each other. Show Notes and Resources.

COVID with a Rare Disease

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Play Episode Listen Later Nov 1, 2021 33:32

COVID is a rough disease no matter how you look at it, however COVID when you already have a rare disease? That has to be extra hard! Barby Ingle joins us once again to discuss the ramifications in these trying times. To reach Barby you can email: Barby@InternationalPain.com Barby Ingle, BSc Psyc, President, Editor-in-Chief International Pain Foundation, iPain Living Magazine

Episode 78: Becoming a Human Doing with Barby Ingle

Pursuit of Relentless

Play Episode Listen Later Oct 23, 2021 48:03

We are all Human Beings but how many of us are Humans Doing? This episode is all about living with chronic pain as well as becoming the best version of yourself. Get in touch with Barby at https://internationalpain.org/ or @barbyingle

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205 Barby Ingle: From Wheels To Heals - Becoming your own best advocate as a Pain Patient

My Steps to Sobriety

Play Episode Listen Later Oct 22, 2021 67:21

Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an effective patient advocate. She presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 25 accommodations over the years for her advocacy work 3 top tips for my audience: 1. Set the expectation through words and actions 2. Learn about your condition so you can ask for help and take on your responsibility 3. Don't get stuck Barby's Social Media Blog - http://barbyingle.com/blog Blog - https://internationalpain.org/pop-blog/ Facebook - www.facebook.com/BarbyIngleOfficial Facebook - www.facebook.com/iPainFoundation Instagram – www.instagram.com/kenandbarbyshow Instagram - https://www.instagram.com/internationalpainfoundation LinkedIn - https://www.linkedin.com/in/barbyingle Twitter - www.twitter.com/BarbyIngle Twitter - www.twitter.com/PowerofPain Website – www.barbyingle.com Website - www.internationalpain.org YouTube - www.youtube.com/user/barbyallyn Wait, there is more!!! Have a look at www.mystepstosobriety.com to see which other books and projects I am involved in! And follow me on Instagram, Podcast, Facebook and Linkedin! https://stephanneff.podbean.com/ https://www.facebook.com/stepstosobriety/ https://www.instagram.com/stepstosobriety/ https://www.linkedin.com/in/stephan-neff-author/

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The Amazing Journey of Managing and Overcoming Chronic Illness and Rare Disease with Author, and Reality TV , The Cheeleader Of Hope Barby Ingle

THE EMBC NETWORK featuring: ihealthradio and worldwide podcasts

Play Episode Listen Later Oct 17, 2021 68:17

Featured in the media more than 1250 times with over 20 accolades to her name; Barby's best known as being a Cheerleader of HOPE, author, and reality television personality. Ken, her husband and Barby provide motivation, inspiration and energy penny saving tips for better daily living. As an Extreme Time Saver, Barby lives life to the fullest despite living in chronic pain. Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy (RSD), migralepsy, PALB2-var breast cancer, valley fever, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20 accommodations over the years for her advocacy work including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100 Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In Feb. 2021 Barby was listed in the top 75 social media advocates for RareDiseases. In 2020, Barby is listed in the top 50 social media advocates for Rare Diseases and top 10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE100, 2020 HITMC Patient Advocate of the Year. In 2021 Barby was awarded the 2021 Medigy HITmc Music Video of the year and 2021 Arizona Capitol Times Leader of the Year; Healthcare. Her books and additional info can be found on her website. http://barbyingle.com/

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The Amazing Journey of Managing and Overcoming Chronic Illness and Rare Disease with Author, and Reality TV , The Cheeleader Of Hope Barby Ingle

THE EMBC NETWORK featuring: ihealthradio and worldwide podcasts

Play Episode Listen Later Oct 17, 2021 68:17

Ep. 44 Hope & Advocacy for Your Life with Barby Ingle

It's Time To Be YOU

Play Episode Listen Later Oct 11, 2021 39:09

What do you do when it seems like everything is against you and you have to change your dreams? You keep fighting! You keep going and you step into a dream more than you knew was possible. In this episode, I speak with Barby Ingle. She was living out her dreams as a head cheerleading coach when everything changed and she developed Reflex Sympathetic Dystrophy (RSD). She lost her physical abilities and was bed bound and in a wheel chair for years before she received a proper diagnosis and proper treatment. Most people would find this discouraging, but Barby was able to speak up for herself and keep fighting to save her life. Now, Barby is a Cheerleader of Hope. She is a best-selling author, reality personality, chronic pain educator, patient advocate and president of the International Pain Foundation. Barby has such an incredible story to tell and her energy is radiant! With this episode, you will leave feeling like there is hope to keep going. You will learn to advocate for whatever is going on in your life. You will be reminded that this is your life and you need to fight for it. Connect with Barby: Website: http://barbyingle.com/ Instagram: @kenandbarbyshow Facebook: https://www.facebook.com/BarbyIngleOfficial/ International Pain Foundation: https://internationalpain.org/ Connect with me, Ariel Bredder: Instagram: @beyoutifulchick Website: beyoutifulchick.com Email me podcast@beyoutifulchick.com with your questions, comments and feedback! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app --- Send in a voice message: https://anchor.fm/beyoutiful/message Support this podcast: https://anchor.fm/beyoutiful/support

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Healing: Identity

Where did you see God?

Play Episode Listen Later Oct 11, 2021 53:50

In episode 67, we hear the story of Barby Ingle, who KNEW she was meant to be a cheerleader. She trained and performed cheerleading, dance and gymnastics starting at age 4 through college, and straight out of college started her own cheer & dance training company. She was living her dream... until a car accident left her with a rare disease and years filled with misdiagnoses, disability, and the loss of nearly everything. What she came to learn is what God really wanted her to lose was her false understanding of her identity. As she came to trust Him, she discovered her true identity, and that disability hadn't actually robbed her of the chance to be a cheerleader: it created an opportunity for abundantly more than she could ask or imagine. You can access Barby's content here: http://www.barbyingle.com/ ~ Check out our website: www.WhereDidYouSeeGod.com ~ Want a free resource? Check out "A Journey through Revelation (for the person that doesn't want to read Revelation)": https://www.wheredidyouseegod.com/a-journey-through-revelation ~ We now have apparel for you to wear as an amazing conversation-starter! https://www.bonfire.com/store/where-did-you-see-god/ ~ Have a story? You can leave a brief message at (804) 372-3836, or www.facebook.com/wheredidyouseeGod/ ~ The music in this episode is "You'll walk, you'll run" by Urban Doxology, from their amazing album "Bread for the Journey." ~ If you appreciate what God is doing through this podcast, you can help keep it going through financial support. Gifts can be processed at https://worldoutreach.org/707 ~ Learn more about how God's calling us: Pray: tinyurl.com/GrangerPray Follow: tinyurl.com/GrangerList Give: worldoutreach.org/707 ~ #healing #dialogue #Godstillspeaks #WDYSG #conversation #hope #cheerleading #cheerleader #identity #purpose #innerhealing #podmatch --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/wheredidyouseegod/support

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You Inc. Episode 113: Advocacy with Guest Barby Ingle

You Inc. & YouTune

Play Episode Listen Later Oct 4, 2021 25:28

Become your own best advocate! It took Barby Ingle years after the diagnosis of a rare disease to figure out how to navigate insurance companies and hospital systems. Listen as Barby shares her journey to self-advocacy in the medical system.

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Lift your story with Barby Ingle Pain Patient Advocate and Author

LIFT Your Story

Play Episode Listen Later Sep 30, 2021 30:01

Barby lives in chronic pain. When asked how she deals with it and keeps smiling. Barby says was a cheerleader and says "She learned to deal with her pain through practice, and although she has difficult days, she said she took the guilt away from herself. She speaks to how others can place guilt on those who use equipment such as walkers and canes. They can perceive you as being weaker or lazy, however, those tools are there to give more life.Barby said she keeps track of her "energy pennies" and she says she has to decide how to spend those "energy pennies". She said by doing so you can manage your social time.She said she went from "physical cheerleader" to "mental cheerleader", a cheerleader of hope.She speaks to the difficulty of being properly diagnosed as well.You can find Barby at the following websites:www.barbyingle.comwww.kenandbarby.comwww.internationalpain.orgMore about Barby:Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.From Wheels to Heals by Barby IngleFree Book with any $20+ Podcast Support Make Up Not Required - How to Brand the TRUE You by LaurieAnn & Contribution by Roy MillerBE A GUEST/FIND A GUEST Start for Free! PODMATCH is innovative, provides easy communication and dashboard scheduling! My pick of the month!Buzzsprout - Let's get your podcast launched! Start for FREEDisclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.Support the show (https://paypal.me/iamthatgal)

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Handling Emotional & Physical Pain - Dr. Foojan chats with Faith Elicia & Barby Ingle

Inner Voice - Heartfelt Chat with Dr. Foojan

Play Episode Listen Later Sep 14, 2021 51:32

Inner Voice – a Heartfelt Chat with Dr. Foojan on KMET 1490 AM / ABC News Radio.  In this segment- Handling Emotional & Physical Pain- Dr. Foojan shares the Tip of the Week about how to transfer our skills from one area to other areas of our life. Dr. Foojan chats with Faith Elicia about her journey through eating disorder, and her new book, Do You See What I See? an interactive workbook of personal reflections, strategies, and tools for anyone suffering from an eating disorder. www.faithelicia.com. Dr. Foojan in the Ask Me segments shares how to watch for your agitation which can cling to any matter and create a fight within as well as with others. And then she brings you Barby Ingle, President of International Pain Foundation, and the author of Wheels to Heals, sharing her powerful story about life-changing events that forced reflection and sprouts her journey. www.barbyingle.com . Check out my website: www.foojan.com Remember to Subscribe, Listen, Review, Share! Find me on these sites: *iTunes (https://itunes.apple.com/us/podcast/i...) *Google Play (https://play.google.com/music/m/Inpl5...) *Stitcher (https://www.stitcher.com/s?fid=185544...) *YouTube (https://www.youtube.com/DrFoojanZeine ) Platforms to Like and Follow: *Facebook (https://www.facebook.com/DrFoojanZeine/) *Instagram (https://www.instagram.com/Dr.FoojanZe...) *Twitter (https://www.twitter.com/DrZeine/) *LinkedIn (https://www.linkedin.com/in/DrFoojanZ...)

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Best Patient Advocate w/ Barby Ingle - TT 153

Trina Talk

Play Episode Listen Later Sep 13, 2021 63:09

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Barby Ingle – Rare diseases, chronic pain

Alchemy For Life - How to's, observations, and tangible doable solutions to reduce stress, get control, have more fun.

Play Episode Listen Later Sep 12, 2021 48:51

Chronic pain & Rare Diseases There are millions who suffer—for one reason or another—from chronic pain. It's a pain that doesn't go away and even for many who have sought help there's no relief. For others they just don't invest the Time, Energy or Resources (Resources is typically the limiting factor—let's be honest) to find […] The post Barby Ingle – Rare diseases, chronic pain first appeared on Alchemy For Life.

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Barby Ingle- From Wheels to Heals

Grief 2 Growth

Play Episode Play 60 sec Highlight Listen Later Sep 7, 2021 75:57 Transcription Available

Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis, and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Barby knows grief from the loss of loved ones in her life as well, both her parents, and her grandparents have passed on.Barby was living her dream. She trained and performed cheerleading, dance, and gymnastics starting at age 4 through college. Straight out of college. Barby started a cheer/dance training company. A year later she was hired by Washington State University as the head spirit program coach. Barby has been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, she developed Reflex Sympathetic Dystrophy (RSD), a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over and TMJ. Barby lost her physical abilities was bedbound for years. Barby used a wheelchair to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. As she searches for a cure, she has become her own best advocate and work sharing the information so that others do not have the same life struggles that I have. Even after seeing over 100 healthcare professionals, having major surgeries she didn't need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – Barby did not give up or give in!In this interview, Barby teaches how we can also become our own best advocates.Her blog, reality shows, and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe.ℹ️ https://www.barbyingle.comSupport the show (https://www.patreon.com/grief2growth)

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Finding Hope When Things Feel Hard & Knowing Who You Are - with Barby Ingle, Author & Cheerleader of Hope

Quiet Connections

Play Episode Play 34 sec Highlight Listen Later Aug 30, 2021 41:54 Transcription Available

What can we learn about hope from a cheerleader living with multiple rare & chronic illnesses? A lot it would seem! In this episode Stacie and Barby, discuss how to find hope when things feel bad, and the importance of getting to know who we are. Through Barby's inspiring story of life-changing events, we'll explore how to help cultivate and hold on to hope even in our darkest moments.Barby also shares with us a practical exercise that has been a crucial tool within her journey, that will help you to appreciate all that you are - which we hope you will try.If you've ever felt hopeless, then this beautifully light hearted and uplifting chatepisode is for you…About Our GuestBarby IngleAuthor & Cheerleader of Hopewww.barbyingle.comBarby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, and president of the International Pain Foundation. Barby started out as a Cheerleader & Dance trainer, since no longer being able to physically cheer, she now uses all the skills and spirit of her cheerleading past to inspire hope in peoples lives, when they most need it.Support the show (https://www.kindlink.com/fundraising/quiet-connections-cic/podcast)

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Barby Ingle

Sustaining Creativity Podcast

Play Episode Listen Later Aug 24, 2021 36:00

Creativity through the lens of a best selling author and multifaceted human"To be creative is to generate something new"Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var breast cancer gene, endometriosis, arthritis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe.Twitter: @Barby Ingle Facebook: @barbyingleofficialInstagram: @KenAndBarbyShow Website: www.barbyingle.com, www.internationalpain.org Mari's Awakening Creativity Porgram:https://courses.skillfulmeans.life/Awakening-Creativity

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How to overcome pain In your life ft. Barby Ingle

Mindset with Rozza

Play Episode Listen Later Aug 23, 2021 39:17

How To Deal With Pain In Your LIFE | Barby Ingle Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20accommodations over the years for her advocacy work including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In Feb. 2021 Barby is listed in the top 75 social media advocates for RareDiseases. In 2020,Barby is listed in the top 50 social media advocates for Rare Diseases and top10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE100, 2020 HITMC Patient Advocate of the Year. More About Barby Ingle:http://barbyingle.com/More About Rozza Mindset:Visit my website:https://www.rozzamindset.com/Follow me on Instagram:https://www.instagram.com/rozzamindset/Connect with me on LinkedIn:https://www.linkedin.com/in/richard-r...

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Cheerleader of Hope

The Biz Reveal Podcast with Craig Sawyer

Play Episode Listen Later Aug 17, 2021 53:19

Now a cheerleader of Hope, Barby Ingle tells her story of how she went from excelling in cheerleading, dance, and gymnastics to battling chronic pain after a disastrous accident. Through her search for a cure for her Reflex sympathetic Dystrophy, she became her own best advocate and strives to share the information she has learned so others don't have to experience the same disheartening struggles. After the show, learn more at: www.internationalpain.orgSupport the show (http://thebizreveal.com/donate)

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Theoretically Theatrical: Performance and Charity

Yorick Radio Productions

Play Episode Listen Later Aug 11, 2021 24:39

In this episode of Theoretically Theatrical we speak to Barby Ingle about how performance and creativity can be used to promote charity and causes that you are passionate about. Barby is the president of the International Pain Foundation and has produced several songs to empower people who live with chronic pain. You can read more about ipain here: https://internationalpain.orgSupport the show (https://ko-fi.com/beech_hedge_witch)

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Barby: Cheerleading Through a Rare Disease

Introducing Me

Play Episode Listen Later Aug 10, 2021 51:53 Transcription Available

Barby Ingle was a born cheerleader, dancer, and full of enthusiasm, but an 8-second car accident changed her path forward. It took three years and many doctors, but she is diagnosed with Reflex Sympathetic Dystrophy (RSD) and continues to go in and out of remission. She shares her journey and helps advocates for others with rare diseases as a Cheerleader of HOPE. Barby's Website: http://barbyingle.com Barby's Foundation: https://internationalpain.org Barby's Instagram: https://www.instagram.com/internationalpainfoundation/ Support the podcast: patreon.com/introducingmepodcast Have a question or want to guest host? Email: introducingmepodcast@gmail.com Find all the podcast social media and more on the website: https://www.introducingmepodcast.com Artwork: instagram.com/graphite.vmb Music/Editing: youtube.com/colemanrowlett

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Becoming Your Own Health Care Advocate with Barby Ingle, the Founder of International Pain Foundation

Health Coach 4 Women

Play Episode Listen Later Aug 4, 2021 27:31

In today's episode, Marsha speaks with one of the most resilient guests who has not only conquered battles with her health, but also with the battle for getting proper healthcare and becoming her own best health advocate. It is through her health journey that she founded The International Chronic Pain Foundation. For years Barby struggled with chronic pain which left her not only being bed bound for years and in pain but, she was left with unanswered questions, useless and devastating health solutions from doctors. It was from one breakthrough with a doctor who put all the pieces of the puzzle together that gave her the answer to at least the proper diagnosis! From there, it was a starting point for Barby where she can now begin to treat her issue and begin to live better with the proper treatment. The goal of this episode is for you to take charge of your health and become your best advocate. No one knows your body better than YOU! You must be the voice for your health and foundations such as the International Chronic Pain Foundation can support you on your journey. Relevant Links: https://www.healthcoach4women.com/work-with-me https://podcasts.apple.com/ph/podcast/health-coach-4-women/id1524164980 https://open.spotify.com/show/5Q4qGtou9ReyssJNb35XJc https://www.youtube.com/channel/UC7KhEkiM0f5bb--2o_An5AQ http://barbyingle.com/ https://www.facebook.com/BarbyIngleOfficial/ https://www.instagram.com/kenandbarbyshow/ https://www.linkedin.com/in/barbyingle/ https://twitter.com/BarbyIngle Guest Bio Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20 accommodations over the years for her advocacy work. #healthcoach4women #marsharoopchandwalker #voiceforchange #health #selfempowerment #selflove #healthcare #mentalhealth #howtostayhealthy #healthandwellness #bestlife #womenshealth #healing #wellness #selfcare #selflove #selfawareness #newepisode #podcast #barbyingle

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Ep. 385 – “From Wheels to Heals” with Barby Ingle (@BarbyIngle)

Going North Podcast

Play Episode Listen Later Aug 2, 2021 40:44

“They say time is money. For me, energy is money.” – Barby Ingle Today's featured award-winning bestselling author is reality show personality, chronic pain educator, patient advocate, and the International Pain Foundation president, Barby Ingle. Barby and I talk about how she remains cheerful despite living with multiple rare and chronic diseases, how to save money on your medical bills, and more!!! Key Thing's You'll Learn: How she defines what a true cheerleader is. What helps her transmute her pain into power. How to save thousands of dollars on your medical bills. The 3 major lessons she learned from her Army mom. Barby's Site: https://barbyingle.com/ Barby's Books: https://www.amazon.com/Barby%20Ingle/e/B002RIU4O0/ref=la_B002RIU4O0_st?rh=n%3A283155%2Cp_82%3AB002RIU4O0&qid=1512248193&sort=date-desc-rank&pldnSite=1 International Pain Foundation: https://internationalpain.org/ My Genetic Meds: https://mygeneticmeds.com/ You May Also Like… Host 2 Host Special - "Faith, Reinvention & Biblical Character Development" with Bob Thibodeau (@bob_thibodeau): https://www.goingnorthpodcast.com/host-2-host-special-faith-reinvention-biblical-character-development-with-bob-thibodeau-bob_thibodeau/ 178 - "Mindful Meals" with Kimberly Spencer (@RealKimSpencer): https://www.goingnorthpodcast.com/178-mindful-meals-with-kimberly-spencer-realkimspencer/ Ep. 372 – “The Grit Factor” with Shannon Huffman Polson (@ABorderLife): https://www.goingnorthpodcast.com/ep-372-the-grit-factor-with-shannon-huffman-polson-aborderlife/ 202 - "Your Divine Human Blueprint" with Julie Renee Doering (@RevJulieRenee): https://www.goingnorthpodcast.com/202-your-divine-human-blueprint-with-julie-renee-doering-revjulierenee/ 208 – “The 50 Year Secret” with Julie MacNeil (@talljewels6ft4): https://www.goingnorthpodcast.com/208-the-50-year-secret-with-julie-macneil-talljewels6ft4/ 231 – “Stroke Forward” with Marcia Moran (@Stroke_Forward): https://www.goingnorthpodcast.com/231-stroke-forward-with-marcia-moran-stroke_forward/ 252 – “Live Calm with Cancer… and Beyond” with David Dachinger and Tamara Green, LCSW (@LovingMeditator): https://www.goingnorthpodcast.com/252-live-calm-with-cancer-and-beyond-with-david-dachinger-and-tamara-green-lcsw-lovingmeditator/ 105 - "A Short Path to Change" with Jenny Mannion (@jennymannion): https://www.goingnorthpodcast.com/105-a-short-path-to-change-with-jenny-mannion-jennymannion/ 97.5 (Thanksgiving Bonus Episode) - "MindShift On Demand" with Donna Blevins (@BigGirlPoker): https://www.goingnorthpodcast.com/975-thanksgiving-bonus-episode-mindshift-on-demand-with-donna-blevins-biggirlpoker/ 220 – “Medical Intuition” with Wendie Colter (@PracticalPathUS): https://www.goingnorthpodcast.com/220-medical-intuition-with-wendie-colter-practicalpathus/ 290 – “The Forgiveness Solution” with Rev. Misty Tyme (@Rev_Misty_Tyme): https://www.goingnorthpodcast.com/290-the-forgiveness-solution-with-rev-misty-tyme-rev_misty_tyme-c2h/ Ep. 380 – “The Simplicity of Self-Healing” with Lisa Warner: https://www.goingnorthpodcast.com/ep-380-the-simplicity-of-self-healing-with-lisa-warner/ Ep. 341.5 – “Playful Cheeks” with Dr. Alison J. Kay (@ajkbliss): https://www.goingnorthpodcast.com/ep-3415-playful-cheeks-with-dr-alison-j-kay-ajkbliss/ 201 - "Fortitude Wins the Battle" with Connie Bramer (@ConstanceBramer): https://www.goingnorthpodcast.com/201-fortitude-wins-the-battle-with-connie-bramer-constancebramer-chaostoclarity/

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Ep. 385 – “From Wheels to Heals” with Barby Ingle (@BarbyIngle)

Going North Podcast

Play Episode Listen Later Aug 2, 2021 40:41

Barby Ingle is a Cheerleader of Hope for people suffering with chronic pain

I Love Kelowna

Play Episode Listen Later Jul 18, 2021 41:50

Barby Ingle is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy (RSD), migralepsy, PALB2-var, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International PainFoundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. Barby has received more than 20 accommodations over the years for her advocacy work including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In Feb. 2021 Barby is listed in the top 75 social media advocates for RareDiseases. In 2020,Barby is listed in the top 50 social media advocates for Rare Diseases and top10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE100, 2020 HITMC Patient Advocate of the Year.BARBY AND I DISCUSSHow did you get involved as a health advocateHow can my audience save thousands on their medical billsWhat are a few tools people can use to better their access to proper and timely healthcare?What was the process to getting diagnosed with a rare diseaseWhat was being a head coach at a Division IA college likeWhat is being on a reality TV show likeTreatment options for those living with chronic painHow can you get the most out of your doctor appointmentsHow pharmacogenomics changed my healthcareWhat are the pro's and cons of telehealth; the new trend in healthcare since the pandemic startedSend audience to:Http://www.barbyingle.comFeatured in the media more than 1250 times with over 20 accolades to her name; Barby's best known as being a Cheerleader of HOPE, author, and reality television personality. Ken, her husband and Barby provide motivation, inspiration and energy penny saving tips for better daily living. As an Extreme Time Saver, Barby lives life to the fullest despite living in chronic pain. Her books and additional info can be found on her website.----------------------------------------POST A REVIEWGUEST BOOKINGS CLICK HEREFollow me on Social MediaNew Town Big Dreams podcast on FacebookInstagramLinkedinLuke Menkes Kelowna RealtorMy Personal Facebook PageSupport the show (https://paypal.me/lukemenkes)

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Thriving through Pain with Barby Ingle

The Don't Quit Podcast

Play Episode Listen Later Jul 12, 2021 32:14

The Don't Quit Podcast takes a look at how professionals work and how you can learn from them. This episode features Barby Ingle, a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis, and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. Website: http://barbyingle.com/ Instagram: https://www.instagram.com/kenandbarbyshow/ Linkedin: https://www.linkedin.com/in/sharongrossman Facebook https://www.facebook.com/BarbyIngleOfficial — Support The Don't Quit Podcast by visiting TyypoPrints.com making dreamers into achieves through motivational art prints. Use promo code: podcast at the checkout to get 10% off your next print. Email the Host, Nick Mann at Nick@TyypoPrints.com Check out the official The Don't Quit Podcast Website: TDQPodcast.com Follow the show on Instagram: @TDQPodcast Follow the host on Twitter @MannDesigner If you enjoyed this episode please give a review on Apple Podcasts. Thank you for listening!

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Episode 38: Finding Hope When It's Hard To See A Way Forward with Barby Ingle

Gone Fishing Podcast

Play Episode Listen Later Jun 15, 2021 42:26

Finding Hope When It's Hard To See A Way Forward Join Ron Bouchard as he interviews the “Cheerleader of Hope,” Barby Ingle, about “Finding Hope When It's Hard To See A Way Forward.” Links to Barby Inglehttp://barbyingle.com/https://internationalpain.org/http://barbyingle.com/books/ Links to Ron Bouchardwww.waypointmastermind.cominfo@waypointmastermind.com Schedule a Free 50 Minute Clarity Session with Ron Bouchard: https://app.acuityscheduling.com/schedule.php?owner=18291344 Related Links and Resources:Visit our Gone Fishing Podcast Webpagehttp://gonefishingpodcast.com/ Subscribe on Itunes:https://podcasts.apple.com/.../gone-fishing/id1519168586 Support our work by checking out our great merchandise:https://www.sargassoapparel.com/ Register for free access to our Gone Fishing Tackle Box Tools and Resources. Our guests have shared some of their most excellent tools, information, and advice. All of it is available free as well as an ever-increasing array of mindset, coaching, real estate, financial, health, wellness, relationship, and other tools & resources to help you improve your life, increase your income, and live life on purpose. Join us today by visiting our website at www.waypointmastermind.com and click the Join Now button. Enter code “2021” and start your journey to a new you today. So Long, and Thanks for All the Fish! (Douglas Adams Tribute)Thank you for tuning in. We at the Gone Fishing Podcast and Waypoint Mastermind genuinely appreciate you! To get more content sent directly to your device as it becomes available, subscribe to iTunes, Stitcher, or your favorite podcast application. Reviews on iTunes are beneficial and appreciated!Support the show (https://www.buymeacoffee.com/gonefishing)

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What Is The Purpose Of My Pain?

Cairn the Load

Play Episode Listen Later Jun 3, 2021 45:54

Barby Ingle was living her dream and in her words was taking life for granted. She trained and performed cheerleading, dance, and gymnastics starting at age 4 through college. Straight out of college she started her own cheer/dance training company. A year later she was hired by Washington State University as the head spirit program coach. She's been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), which is a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over and TMJ. She lost her physical abilities was bed-bound for years. Using a wheelchair to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. Barby knows firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you're experiencing. Barby said, "As I search for a cure, I became my own best advocate". Barby works sharing the information so that others do not have the same life struggles that she has. Even after seeing over 100 healthcare professionals, having major surgeries, that she didn't need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – she did not give up or give in! Barby was tested on her limits and realized they are past the boundaries she placed on herself. She had to become the Chief of Staff of her Own Medical Team. Barby says, "If I can do it, anyone can." We all just need support and HOPE! Barby is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis, and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows, and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20accommodations over the years for her advocacy work including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All-Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In Feb. 2021 Barby is listed in the top 75 social media advocates for RareDiseases. In 2020, Barby is listed in the top 50 social media advocates for Rare Diseases and top10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE100, 2020 HITMC Patient Advocate of the Year.Barby IngleThe Chosen

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What Is The Purpose Of My Pain?

Cairn the Load

Play Episode Play 60 sec Highlight Listen Later Jun 3, 2021 45:53 Transcription Available

Barby Ingle was living her dream and in her words was taking life for granted. She trained and performed cheerleading, dance, and gymnastics starting at age 4 through college. Straight out of college she started her own cheer/dance training company. A year later she was hired by Washington State University as the head spirit program coach. She's been battling chronic pain since 1997. First with Endometriosis which resulted in a full hysterectomy and left oophorectomy. Then in 2002, I developed Reflex Sympathetic Dystrophy (RSD), which is a progressive neuro-autoimmune condition that affects multiple systems in the body and needs to be treated early so that disability does not take over and TMJ. She lost her physical abilities was bed-bound for years. Using a wheelchair to get out of bed. It took 3 years to get a proper diagnosis and another 4 years to get the proper treatment. Barby knows firsthand how hard it is to continue looking for relief, perfect answers, and then coming up against healthcare professionals who blow you off or do not believe what you are saying could actually be what you’re experiencing. Barby said, "As I search for a cure, I became my own best advocate". Barby works sharing the information so that others do not have the same life struggles that she has. Even after seeing over 100 healthcare professionals, having major surgeries, that she didn’t need, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – she did not give up or give in! Barby was tested on her limits and realized they are past the boundaries she placed on herself. She had to become the Chief of Staff of her Own Medical Team. Barby says, "If I can do it, anyone can." We all just need support and HOPE! Barby is a best-selling author, reality personality, and lives with multiple rare and chronic diseases; reflex sympathetic dystrophy(RSD), migralepsy, PALB2-var, endometriosis, and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows, and media appearances are used as a platform to help her become an e-Patient advocate, and she presents at healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received more than 20accommodations over the years for her advocacy work including; 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All-Star Reunion Superstar award for her Social Media efforts and Top 50 Chronic Pain Advocates. In Feb. 2021 Barby is listed in the top 75 social media advocates for RareDiseases. In 2020, Barby is listed in the top 50 social media advocates for Rare Diseases and top10 Healthcare Influencers for All Marketers to Follow, 2020 PharmaVOICE100, 2020 HITMC Patient Advocate of the Year.Barby IngleThe Chosen

From Wheels to Heals with Barby Ingle

Feed Your Spirit Podcast

Play Episode Listen Later May 30, 2021 68:14

Feed Your Spirit: Join me, your host Jill Dobrowansky as I sit down with friends and nourish your spirit with stories of hope and encouragement with a whole lot of Jesus sprinkled in. At Feed Your Spirit, I like to say that we imperfectly perfect people who are uplifting others through grace-filled encouragement. I am so happy you joined me today! With the determination to consciously live in God’s word, I invite you to plug in, prepare your heart, and Feed Your Spirit. On today's episode, I sit down and chat with the best-selling author, reality TV personality, inspirational speaker, and President of the International Pain Foundation, Barby Ingle. Barby has an incredible journey of faith, overcoming immense obstacles, and how God has a purpose for everything we face. No matter if we can see it or not, He is always with us. Connect with Barby on her website: Barby Ingle Learn more about the International Pain Foundation: IPF Follow Barby on Facebook: Barby Ingle Follow Jill on her website: Jill Dobrowansky Purchase Jill’s New Book: Faith & Fasting: Scripture & Plant-Based Recipes to Nourish Your Body & Soul Follow Jill on Instagram: Jill Dobrowansky Connect with Jill on Facebook: Jill Dobrowansky Say ‘Hi’ or provide show feedback: jilldobrowansky@gmail.com Become a supporter of the podcast: Feed Your Spirit Patreon Support the podcast with some Feed Your Spirit Gear: Feed Your Spirit TeeSpring You can also now support the show by buying me a virtual cup of coffee (YUM!): Coffee for Jill Be sure to subscribe, rate, review, and share the Feed Your Spirit Podcast!

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YH21-17 Barby Ingle going From Wheels to Heals

No Title

Play Episode Listen Later Apr 26, 2021 64:32

My why is going From Wheels to Heals. I have a rare disease and chronic pain story of Hope, Help and Understanding. I am an Amazon bestselling author, reality television personality, and president of International Pain Foundation (iPain) sharing my powerful story about life-changing events that forced life reflection, purpose, and my journey from wheels to heals. https://selfdiscoverymedia.com/?p=94824

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Barby Ingle. Tireless Patient Advocate. HITMC Award Winner

Healthcare IT Today Interviews

Play Episode Listen Later Mar 19, 2021 26:49

We sit down to learn more about the amazing work that Barby Ingle is doing for patients and healthcare in general. She was the winner of the 2020 Medigy HITMC Award for Patient Advocate of the Year and we wanted to find out more about her background and what her thoughts were on the current state of healthcare. Learn more about Barby Ingle: https://twitter.com/BarbyIngle Find the details of the HITMC Awards: https://www.hitmc.com/2020-medigy-hitmc-awards/

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Lilly Stairs, Founder Patient Authentic

People Always, Patients Sometimes

Play Episode Listen Later Nov 17, 2020 22:03

Tom Rhoads (00:03): Welcome to "People Always, Patients Sometimes". I'm Tom Rhodes, CEO of Spencer Health Solutions. Our podcast is focused on many of the thought leaders and executives that are calling for change and how we design and run clinical trials. We have also had patient advocates on the program like Jen Horonjeff, of the Savvy Cooperative, Pam Gavin of NORD and Barby Ingle of the International Pain Foundation. Our mission at Spencer Health Solutions is to ensure that patients are at the center of everything we do. So we are pleased to kick off a series of interviews with more patient advocates, influencers, and organizations that are focused on bringing the patient experience to the forefront of the conversation in healthcare. Kicking off our series is a conversation with Lilly Stairs and leading patient advocate advisor and founder of Patient Authentic. I know you'll find her conversation with Janet Kennedy, as interesting as I did. Janet Kennedy (01:01): "People Always, Patients Sometimes" podcast is about the change agents in healthcare who are focused on patient experience, patient engagement, or disrupting the process of clinical trials to be more patient-centric. Our guest today certainly fits that bill. Lilly Stairs is a nationally recognized patient advocate, speaker, author, and innovator. She has recently founded a new company, Patient Authentic, which I look forward to hearing more about on "People Always, Patients Sometimes." Welcome to the podcast. Lilly! Lilly Stairs (01:33): Thanks so much for having me, Janet. It's always a pleasure to connect with you. Janet Kennedy (01:38): I think entrepreneurship is a big challenge and as a patient advocate where you're already facing a series of your own personal challenges, as well as challenges in the workforce. Wow. What made you think about starting your own company? Lilly Stairs (01:55): Well, Janet, I will also say that I didn't plan to start a company the year that we ended up with a worldwide pandemic, but here we are to add that challenge to the list too. But yeah, I've always had an entrepreneurial spirit. From a very young age, I was always creative and started choreographing for a kids' theater program and took the helm there. And then in high school, I started an anti-bullying program that ended up touring around our local schools in Massachusetts. When I got to college that is when I started my patient advocacy work. And because I was diagnosed with a few different auto-immune diseases I started a campaign to raise awareness about people who were living with auto-immune diseases. There are an estimated 50 million Americans who are living with auto-immune diseases. It was called the 50 cents for 50 million. I have spent most of my career in health tech startups. It just felt right to jump in and take the plunge and make a bet on myself and start Patient Authentic. Janet Kennedy (03:17): I imagine your first 30 days you were feeling pretty euphoric and then February came and you probably started to be a little nervous. So COVID, how has that impacted your life and impacted your work? Lilly Stairs (03:31): Well, I think it's really, and I don't think this is an exaggeration, it's turned my life and everyone's lives upside down. And I, as somebody who is considered high risk because I am immunocompromised due to the medication that I am on, which depresses my immune system to treat my auto-immune diseases is certainly scary and carries a lot of weight. I am fortunate that from a work perspective, all of us in healthcare, I think have been quite busy, which is important. We've stayed busy trying to do what we can to support patients. And so from a work perspective, all has been really good. It's just that we've got a lot of COVID focused projects now. And then from a personal perspective, I think that honestly, it's been hard because it's isolating and I think a lot of people are feeling that, and there's always the fear that people are not taking it seriously enough, especially as someone who is high risk. Janet Kennedy (04:30): I understand totally what your experience is. Like my two nieces are in New York City who works at Trader Joe's and unfortunately, the misapprehensions and the willful lack of understanding is really frightening for them. One of them actually did get COVID, was fortunate that it felt like the flu, and got over it, but then found out later she had definitely had it. It has changed everything in our lives. So I'm curious as a patient advocate, and I know you are talking to patients constantly, what is the general mood among the folks that you're talking to? Are they finding that this is an incredibly scary time or are they finding that even the discussion of "at-risk" is raising awareness and making people a little more sensitive or empathetic to folks who have challenges? Lilly Stairs (05:27): Well, I have to say, I think it's a mix. And I would say generally speaking patient communities across their pubic areas have certainly been vocal about concerns that people are not taking COVID seriously enough. And I think that there are some really baseline things that everybody could be doing, like wearing a mask that would put a lot of those fears at ease. I will say warranted fears because for some contracting COVID is really a death sentence when you are somebody who's high risk. I'll be honest in saying that for me personally, I live in balance. I live in breathe and balance. That's how I operate. And for me, I've been cautiously optimistic and I'm cautious in living my life. So I don't just sit at home. I will go out, I wear a mask, but I'll go do outdoor dining in Boston. We have some awesome outdoor dining and, you know, see friends at a socially distant level because I think what we're seeing with this pandemic is a mental health pandemic kicking in because so many people are struggling with the isolation and the loneliness. So I try to weigh that out. And I think that a lot of other people in the community do that too. And it's really just about finding that mix of being safe and taking care of yourself. Janet Kennedy (06:50): I agree very wise words. Now let's back up a little bit and talk about Patient Authentic. I don't know what your company is doing. So tell me a little bit about it. Lilly Stairs (07:01): Absolutely. Well, you know, Janet, I think that I'm still learning what my company is doing and I don't know if I should be saying that, but here we are. Because I think it's evolved so much since I started in January. And a lot of that is largely because of COVID, but also because I've just ended up in places I didn't expect. And so the way that I like to talk about Patient Authentic is that it is a hybrid of healthcare marketing and patient advocacy. So all of my work is grounded in developing patient-centric deliverables alongside patients. And I'll talk to you about a few projects I'm working on just to give you a flavor of what it is that I'm doing at Patient Authentic. So I am leading patient advocacy for a health tech company and that's Clara Health, which is in the clinical trials space. Lilly Stairs (07:50): And I know that Spencer does quite a bit of work there too. I am developing and running a social media campaign with oncology patient influencers to promote a nutritional supplement, which helps to aid in the healing of mouth sores that have been developed from chemo and radiation. So out of that, we've developed the hashtag #MoreThanASore campaign, which is all about how sores are so much more than just a sore and they really impact the quality of life. And so there's the marketing in me coming out through that campaign. And then, you know, I'm working with some patient advocacy groups as well. So I'm building a masterclass to help train patients from across therapeutic areas and how they can be effective advocates on a policy level. So on Capitol Hill and at FDA advisory committees. Finally, I'm also supporting the development of a COVID-19 resource hub for the transplant patient community. My projects span across therapeutic areas and they are focused, at the heart of them, they are working with patients to create something, Janet Kennedy (08:56): Oh, that's excellent. Now, is this a single consultancy? Or do you have other patient advocates that you will bring in to support some of these projects? Lilly Stairs (09:04): Primarily it's a single consultancy, but I do often bring in patients who are paid because patients should always be paid to support the work. Janet Kennedy (09:14): I totally agree. Well, let's talk a little bit about some of the work that you've done in the past and hopefully in the future related to clinical trials, have you ever participated in a clinical trial as a patient? Lilly Stairs (09:29): I participated in a study that was through my gastroenterologist for my Crohn's disease. And it happened right when I was in the office and it was quick as could be. My gastro said, "Hey, I'm working on this study. We're trying to measure the levels in the liver because the liver is often impacted by treatments." And so I agreed to do it. And it happened all in the same office visit. It was the most convenient clinical trial experience I've ever had. Did the informed consent, all there. Probably happened in 20 minutes Janet Kennedy (10:08): Now from a standpoint of your work as a patient advocate and being around the clinical trial space and helping support companies and organizations that are involved in clinical trials. I want you to put your hat on as a patient advocate. If you were to point out one or two things that are really kind of a roadblock for patients in participating successfully in a clinical trial, regardless of whether the clinical trial is a success, what do you think are the challenges that patients face that the pharma companies, CROs and physicians that are involved in research need to be thinking more about? Lilly Stairs (10:48): I'm just going to pick two - there's a lot. And so two is tough for me to do, but I will do it. I still think that awareness and myth-busting. As much as we talk about it in our community, I think that in the professionals and the clinical trial space, we talk a lot about this, but we aren't reaching the right people. It's still a huge issue. There's still so much misunderstanding about clinical trials and risk associated with them. And am I going to get the placebo? So many questions that really plague the everyday patient when we think about clinical trials. And so I think we have a lot more work to do there. And part of the solution to me is that we need to have more people working together to raise awareness and to get into communities. And so we can't be all working in silos because we continue to work in silos. Lilly Stairs (11:45): We need to work together. That's one piece. The other big barrier that I have seen is honestly, the travel and the distance piece. There are a lot of patients who actually do want to participate in clinical trials, but they are restricted because it is too far for them to travel. And they can't either, you know, financially afford it because the trial is not going to cover the cost of travel, or it's just, it's a distance thing. And they are not well enough to travel. And I can point to through my work with all of the different companies I've worked with, I can point to so many patients from across therapeutic areas that have had this experience. Lilly Stairs (12:28): So I was recently speaking with a woman who was in a breast cancer trial. First of all, her physician didn't even bring up clinical trials to her, which is a problem in and of itself. She did the research on her own and she ended up traveling from the East coast to the West coast for a clinical trial. And she had to do a GoFundMe so that she could raise the money. And she ended up having to drop out of the trial because the GoFundMe only got her so far. So we have patients who are willing to participate in trials, but we're not making it convenient for them. I would say that we need to branch out outside of some of these research hospitals. We also need to, if we can't do that, build money into the budget to help the patients get there in a comfortable manner. Janet Kennedy (13:14): So is the challenge that a lot of the research hospitals are in major metro areas, and if you don't live in New York or Boston or Atlanta or Los Angeles, you're going to miss out on an opportunity. Lilly Stairs (13:26): Yes. Precisely. Janet Kennedy (13:29): All right. Well, what would solve some of those problems? Lilly Stairs (13:33): Again, travel, being able to provide stipends for travel and not just like a $25 Uber, if somebody lives out of state, but they're really willing to participate in the trial. What can you do to facilitate accommodations, to cover the flight, to cover the hotel room? Because I'll tell you something working in the recruitment space, you're going to spend a lot more money trying to recruit patients that are nearby. Versus if you just foot the bill for flying someone out, getting them a hotel room who's eager and willing to participate. So that's one piece. And then also, I think we need to be raising more awareness within some of these community hospitals too so that physicians within community hospitals can refer out to some of the major research institutions. Because again, this is where the awareness piece comes in. There's a lack of awareness and understanding about trials. So patients don't even know they exist in the first place. Janet Kennedy (14:31): So raising awareness is a real key. Now, how are patients finding out about things? They suddenly find out they have a disease and they're just going online and doing a search and then whatever pops up pops up. Lilly Stairs (14:44): I think that online is of course a huge space. I mean, I would guess I, I won't put a statistic because I'm sure I won't be accurate, but everyone's going to Google. Everyone goes to Doctor Google. And I think that the patient advocacy organizations play a role. But I will say that we are seeing patient influencers or individual advocates are becoming more and more prominent in being the trusted go-to resource for sort of your everyday patient. So these are the patients who are sharing their stories on Instagram and TicTok now and Twitter, and they have blogs. They're on YouTube. That's where patients are going because they're able to get that sort of one-to-one support and really hear from somebody who understands them. So I've been trying to really push companies, pharmaceutical companies, biotech companies, CROs, to engage not only with the patient advocacy organizations but also with some of these patient influencers and advocates who are out there and working to fight the good fight and raise awareness. Janet Kennedy (15:49): You know, a few years ago, patient advocates were not that seen, were not that present. And I think as social media has become really an essential part of our lives, patients are realizing that there's real power there. However, there's also the challenge of my gosh, you have a chronic illness, or you have a disease that is very debilitating and social media in many ways, demands that you're up, that you are being positive, that you're being optimistic. How would you balance being someone with a chronic illness or a disease that really makes you feel bad? And these social platforms that sort of demand a much more upbeat presentation of yourself. Lilly Stairs (16:34): That's a great question. And I think it's something that's so many advocates struggle with because when you become a patient advocate and you make the decision to share your story, you're often the type of person who wants to do better and to help others, right? You're out there because you want to support other people and help them not feel like they're alone. And that can become emotionally demanding and physically demanding. Even when, especially when you are going through it in the auto-immune space, what we would call it a flare. So when you are really not well and your disease is under control. And so it's a matter of learning to say no, and to set boundaries. And so I've seen a lot of patients artfully do this, where they say, you know what, I'm turning off the comments on my Instagram because I cannot be every single person's support system. I can put this out into the world and I can try to help them, but I can't possibly respond to every single person because it's too taxing on me. And you know, some maybe sometimes you have your comments on maybe sometimes you have it off, but it's little changes and tweaks like that to help ensure that you're taking care of yourself while you're taking care of others. Janet Kennedy (17:41): I know you mentioned earlier that you're actually doing a course for patient advocates on how to use social media. There are so many platforms now, how are you focusing their energy? When I coach about social media, my advice is you can't do it all. So pick a few and do it well. But I do see some patient advocates with a lot of social platforms going on at the same time. Lilly Stairs (18:06): Oh yeah. It's hard to do. I agree with you, Janet, that picking one or two and focusing on those and making them really great is also my piece of advice. It also feels less overwhelming. I was just giving a keynote at the One Rare young adult's virtual summit. It was their first annual one. Rarer is an amazing organization run by Jen McNary. And so I highly recommend checking them out. It's a rare disease organization for young adults, but we were talking about career planning and how you build your brand as an advocate. And again, one of my key pieces of advice was to pick one platform so that you don't get overwhelmed. And so that you are not emotionally and physically drained and also pick some platforms to have that are private, that is just for you and your friends. I'm really active on Twitter professionally, but I have my Instagram private and closed so that I can just feel comfortable sharing what I want to share there and not feel like I always have to be on. Janet Kennedy (19:05): It is a huge challenge in social media and one that demands the ongoing feeding of the beast. However, do you think you can take a break from social and come back and not lose your audience? Lilly Stairs (19:18): Oh, 100%. Absolutely. If you need to take a hiatus, you can. And I think that what's interesting is that especially in the patient community, people are very forgiving of that because they know exactly what you're going through. And so they understand that it can be really taxing to have to be on all the time and they'll miss you while you're gone, but they'll be just thrilled that you've come back, Janet Kennedy (19:41): Circling back to Patient Authentic and what you had originally intended to be before COVID came. Where did you think that the company was going to take you and what were you hoping to accomplish? Lilly Stairs (19:54): Honestly, what I wanted to do, is still there. And that is to build and work on meaningful projects that support the patient community and make you move the needle in healthcare. And so I am doing that. It's just a bit of a different one than I thought. Because of my background in marketing, I always envisioned that every single thing I worked on was going to be super campaign driven. And now I find that I'm doing a little bit of strategy here, a little bit of project management, a little bit of advocacy engagement. So if anything, it's really more fitting for me because I tend to be the type of person who loves to work on a lot of different things at once. It's very rewarding for me to be able to leverage a lot of my different skills to help better the community. The opportunity to work, not only health tech and biotech and pharma, but also to work with some of these patient advocacy organizations who are really at the ground level fighting the good fight. Janet Kennedy (20:59): Oh, well, that's a great note to end on. So Lilly, tell people how they can find you. Lilly Stairs (21:04): Yes. So you can find a, learn more about Patient Authentic at www.patientauthentic.com. You can find me on Twitter @LillyStairs. You can find Patient Authentic on Instagram @PatientAuthentic. Janet Kennedy (21:24): That's excellent. Well, I can't thank you enough for being here, Lilly and I look forward to hearing more about some of the new programs and projects you're going to be involved in, in 2021. Lilly Stairs (21:35): Thanks for having me, Janet. Janet Kennedy (21:38): Thank you for listening to our interview with Lilly Stairs, founder of Patient Authentic on the "People Always, Patients Sometimes" podcast. We look forward to hearing your thoughts about the episode. You can tweet us @spencerhealth or send me an email at jkennedy@spencerhealthsolutions.com.

Living With Chronic Pain - International Pain Foundation President Barby Ingle

Once Upon A Gene

Play Episode Listen Later Oct 22, 2020 38:47

ONCE UPON A GENE - EPISODE 053 Living with Chronic Pain - International Pain Foundation President Barby Ingle Barby Ingle is a fierce advocate, the President of the International Pain Foundation, a chronic pain educator and advocate, motivational speaker, Amazon best-selling author and reality tv personality. She's received more than 20 accolades for her work in the chronic pain community. EPISODE HIGHLIGHTS Where did your journey begin? When I was coaching, I was living all of my dreams. I got endometriosis, went through the treatment process and had a full hysterectomy. Just before my 30th birthday, I was hit by a van and injured, started physical therapy and discovered I had a rare disease triggered by the accident- a rare neuro-autoimmune disease called reflex sympathetic dystrophy (RSD). At first it was regional, but several surgeries complicated the condition and I was in a wheelchair for almost seven years. Was there ever a point in your diagnosis journey where you lost hope? Even at the lowest, there was hope. The worst moment was when I had a rib removed. The surgeon made a mistake, leaving two bone spurs going into my right lung and wrapped around a nerve bundle in my shoulder. I started having lung collapses, which was disregarded as something that sometimes happens. I didn't know he was wrong and to push further. I experienced a lung collapse that led to an emergency surgery and my dad was there giving me support and hope. What organization did your family help to launch that you're a part of now? Every year, my dad had us do a family project and we would decide at Thanksgiving what it was going to be. Sometimes it would be Christmas caroling at retirement homes or serving food to the homeless. In 2006, we lost my step-sister to the same condition I have, so when Thanksgiving came around my dad led us to start a non-profit. At that time, I was wheelchair bound, bed bound and wasn't able to do much with it, but I was the face of the campaign, The Power of Pain. After the first year, the board decided we needed to broaden the scope to work with all chronic pain diseases. In 2010 I joined the executive board and in 2012 I was elected the President of the foundation. We have expanded internationally to 14 countries with the help of people leading projects to make their communities better. What are you most excited about right now that's happening with the International Pain Foundation? November, or "Nerve-mber" is a big month for us with spotlights on conditions, sources of facts and information and the International Pain Summit, which will be held virtually this year. I'll be speaking at the summit this year with my husband on empowerment for patients and caregivers with tips and tools for everyday life. LINKS AND RESOURCES MENTIONED Teal Pumpkin project https://www.foodallergy.org/our-initiatives/awareness-campaigns/living-teal/teal-pumpkin-project International Pain Foundation https://internationalpain.org/ Register for the International Pain Summit 2020 https://internationalpain.org/ipain-summit-2020/ iPain Living Magazine https://internationalpain.org/ipain-living-magazine/ Books by Barby http://barbyingle.com/books/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

christmas amazon president thanksgiving power books living pain register stitcher special needs nerve rare diseases rsd foundation president living with chronic pain barby ingle international pain foundation ctnnb1

Blessings in Chronic Pain. Patient, Doctor, Plan.

Play Episode Listen Later Aug 30, 2020 38:37

Chronic pain touches much. Art, science, never-ending experiment. Patient, doctor, plan. Gratifying when it works. Chat with Dr. David Edwards, pain specialist. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:52. 1 Introducing Dr. David Edwards 02:49. 1 Successful first visit. Acquaintance. Story. 04:27. 2 Useful technology of pain management 09:29. 3 Care partner, family 14:26. 4 Mutually agreed-upon outcomes 16:40. 4 What’s a good day? 18:39. 5 3 Ts and 2 Cs in a marathon 19:55. 5 Expecting too much from doctors? 24:16. 6 Pain specialist motivation 25:42. 6 Evaluating success in an app 28:31. 7 Reflection 36:23 8 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Melissa Reynolds, Fatima Muhammed-Ighile, Laura Marcial, Barry Blumenfeld, Joshua Richardson, Shiv Rao, Jessica DeFrank, Chris Harle, Barby Ingle, Amy Baxter Links David Allan Edwards, MD Daylio Journal Fibromyalgia Peer Support - Melissa Reynolds Patient Family Advisor Network Related podcasts and blogs Health Hats series about Chronic Pain About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Where do I make the most choices about my health? I have multiple sclerosis. I make choices about function, activity, pain, food, and mood all day, every day. Ok, I exaggerate, many times a day. How do I support myself in making these choices? I experiment, I track stuff, I worry, I connect and consult. As a person, I approach these choices for myself, sometimes with other individuals. Always as an experiment of one. On the other hand, clinicians work with thousands of people making choices, thinking first about people as a group aand then as individuals, or the other way around. An assumption of people who work on computerization of clinical decision support, CDS, (making medical choices) is that computerization will help clinicians make the decisions faster or more in alignment with research and guidelines. I like to question assumptions. I’m eyeball deep in this clinical decision support business because that’s where a lot of time and money is spent and considerable potential sits. I met our guest, Dr.

art story dm blog patients blessings chat chronic cds composer cs scroll open source chronic pain ts acquaintances leeuwen david edwards barby ingle health hats from danny

Blessings in Chronic Pain. Patient, Doctor, Plan.

People Always, Patients Sometimes

Play Episode Listen Later Aug 30, 2020 38:37

Chronic pain touches much. Art, science, never-ending experiment. Patient, doctor, plan. Gratifying when it works. Chat with Dr. David Edwards, pain specialist. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Proem 00:52. 1 Introducing Dr. David Edwards 02:49. 1 Successful first visit. Acquaintance. Story. 04:27. 2 Useful technology of pain management 09:29. 3 Care partner, family 14:26. 4 Mutually agreed-upon outcomes 16:40. 4 What's a good day? 18:39. 5 3 Ts and 2 Cs in a marathon 19:55. 5 Expecting too much from doctors? 24:16. 6 Pain specialist motivation 25:42. 6 Evaluating success in an app 28:31. 7 Reflection 36:23 8 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer, Arranger Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Melissa Reynolds, Fatima Muhammed-Ighile, Laura Marcial, Barry Blumenfeld, Joshua Richardson, Shiv Rao, Jessica DeFrank, Chris Harle, Barby Ingle, Amy Baxter Links David Allan Edwards, MD Daylio Journal Fibromyalgia Peer Support - Melissa Reynolds Patient Family Advisor Network Related podcasts and blogs Health Hats series about Chronic Pain About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Proem Where do I make the most choices about my health? I have multiple sclerosis. I make choices about function, activity, pain, food, and mood all day, every day. Ok, I exaggerate, many times a day. How do I support myself in making these choices? I experiment, I track stuff, I worry, I connect and consult. As a person, I approach these choices for myself, sometimes with other individuals. Always as an experiment of one. On the other hand, clinicians work with thousands of people making choices, thinking first about people as a group aand then as individuals, or the other way around. An assumption of people who work on computerization of clinical decision support, CDS, (making medical choices) is that computerization will help clinicians make the decisions faster or more in alignment with research and guidelines. I like to question assumptions. I'm eyeball deep in this clinical decision support business because that's where a lot of time and money is spent and considerable potential sits. I met our guest, Dr.

art story dm blog patients blessings chat chronic cds composer cs scroll open source chronic pain ts acquaintances leeuwen david edwards barby ingle health hats from danny boston drummer

Chronic Pain Patient Advocate Barby Ingle

Play Episode Listen Later Jun 9, 2020 21:54

Tom Rhoads: The patient perspective is an integral part of how we at Spencer Health Solutions approach our work from UX and human factors testing and designing Spencer all the way through our customer interactions. We always look at how the patient evaluates their experience with our system. In this episode of our podcast, we asked chronic pain patient advocate Barby Ingle, founder of the International Pain Foundation, to share her perspective on improving clinical trials. I know you enjoy this episode of "People Always, Patients Sometimes". Janet Kennedy (00:37): Hi, my name's Janet Kennedy and I'm your host for "People Always, Patients Sometimes", a production of Spencer Health Solutions. I am really looking forward to my conversation today with Barby Ingle. Barby is a bestselling author, a reality live-streaming personality, she lives with reflex sympathetic dystrophy, Migralepsy, endometriosis, and other pain disorders. Not a surprise. Barby is also a chronic pain educator, a patient advocate, and president of the International Pain Foundation. I am very, very excited to have Barby here today and also because she is an avid user of social media to share her story. Barby, welcome to People Always, Patient Sometimes. Barby Ingle (01:21): Thank you so much Janet for having me. I'm so glad to be with your audience today. Janet Kennedy (01:26): You know, we talked to a lot of different people in pharma, in health care and clinical research, and I have spoken with some other patients, but I have to say in reading your bio and the things that you're dealing with, while the title of our podcast is people always patients, sometimes I have to think that sometimes it feels like a flip for you, that it's really patient. Always people sometimes. Yeah. Well, I think I'm both all the time. Is it a situation where you literally can never not think about what you're feeling? Barby Ingle (02:02): I absolutely have to pay attention. I have to plan and be prepared, and luckily before I was chronically sick, I was already organized, so I definitely used the skills that I learned in cheerleading, including organization and responsibility in dealing with the healthcare challenges that I'm faced with every day. For sure. Janet Kennedy (02:22): Now, have your challenges come as a result of your adult life, or is this something you dealt with even as a teen or preteen? Barby Ingle (02:30): I was actually pretty healthy growing up and when I was 26 I developed endometriosis. And then at 29, I developed reflex sympathetic dystrophy, RSD for short, and really endometriosis was something I got through really quickly. You know, it was like, Oh, this didn't work. These shots didn't work. What's the next thing? A laparoscopy. Okay. That made my insides very mad and the spread. And then the final thing was a hysterectomy and I was like, take it out. I'm done. I can't take this. I got past it and I thought if I could pass that I could get through anything. And then I got hit with RSD and secondary conditions after a minor car accident, which triggered it. It's actually an autoimmune disease, but it was triggered by an automobile accident and that changed my life forever. That eight seconds. Janet Kennedy (03:26): Wow. Okay. I'm going to take a moment and really think about that eight seconds. And your life has changed forever. So what does that mean day to day? How are you impacted by RSD? Barby Ingle (03:38): So prior to the impact, I was in my vehicle, a small vehicle, and I was hit by a 16 passenger van. I saw the van coming, I saw him in my rearview mirror and I twisted my body and the van impacted my car and I blacked out after that. I went to court and he testified, he said he had never, he didn't see me and he never took his foot off the gas. So after he hit me, so from that moment I started having burning fire pain. It was in my face, neck, and shoulder area. But it was so overwhelming with my thoughts, with my actions. I was, I went from being a collegiate cheer coach at a division 1A university to, I still was trying to keep coaching, but my coaching suffered, my team suffered. Barby Ingle (04:26): We were in the top five in the country rankings for cheerleading. And you know, I really was living my best life and that eight seconds that it took for this accident to happen, everything changed. And I went from well to being bed-bound for the next six months or so. I tried to continue to work and I would go to practice and I at practice would lay down on the floor and have our team doctors taking care of me. Instead of taking care of my student-athletes. I would go back to my office and lock the door and sleep because I was in so much pain, but I also was quite fatigued maybe just from having that much pain. If I turned my head to the right, I would pass out. Just literally everything in my life changed. I was married for 10 years. It's my first marriage. Barby Ingle (05:15): Did not survive the auto accident. I couldn't explain why they told me I had whiplash, but yet I had this burning fire pain. I started going from doctor to doctor to figure out what was wrong. I went to chiropractors, physical therapy, anything and everything that was suggested. I tried and then what? Oh goodness. Then I ended up over a three year period moving from Washington state down to Arizona per doctor's instructions. They said I would get better care here. I ended up seeing 43 doctors in a three year period. And finally, that 43rd doctor stopped and he had me bring in, at that time all of my medical records, which took three, three-inch binders. I'm now on binder nine of medical records. And before he even came in to meet me or see me or anything, he went through every single record from all 42 providers before him from all the different specialties. Barby Ingle (06:12): And he came in and said, I think I know what's wrong but I'm not sure and I want to run a test. And I said, well tell me about the test and I'm going to go home and study about it. And that was the first time I advocated for myself instead of just listening to and doing what the doctors told me, I stopped and said, you know, I want to go research on my own. And I and I took a week to research and talk to other patients that had had this procedure and decided to do the test and went in seven days later had the test done and I was tested positive for RSD, which is now known as central pain syndrome. Janet Kennedy (06:50): And what, is this a situation where you have to be medicated all the time? Is there a different kind of physical therapy that works for you? Barby Ingle (06:59): I'm allergic to Oxycontin so I didn't know how I would do with other opioid medications for pain. So I also didn't want to be like out of my mind so much mentally foggy cause I was already mentally foggy from the RSD symptoms. So I tried to do other treatments, but I was on pain medication for a lot of that time. Although I was on a lot lower dose and strength than many of my friends are. I supplemented it with radio frequency ablations as well as nerve box. And I even tried epidural steroid injections. I tried physical therapies. I went through a whole bunch of different, I've done three clinical trials, two medications and also a medical device and I still actually am using the medical device that I did throughout the trial and there's actually a book written and I have another family member who has the same condition as I do and he actually uses the same medical device that I used and we're both in this book that has come out about the device. Janet Kennedy (08:11): You went from literally suffering every day needing multiple physicians, changing your life totally moving to a new area. Finally got a diagnosis. You got some things maybe a little more manageable? Barby Ingle (08:24): Yes, so I was in the accident on September 26th, 2002 and I finally started doing all of these treatments and trying all of these options. I ended up in a wheelchair. I went from being face, neck, and shoulder; through surgeries, I didn't need I had a rib removed. The doctor made a mistake on that and ended up damaging my right lung and just one thing after the next went bad, I ended up in a wheelchair and bed bound to the right side of my body. My hand was curled up, my foot curled up and really just was trying to maintain being alive. In 2009 I finally went through infusion therapy in seven days in ICU infusion. I went in in a wheelchair in seven days later I walked out, I teeter-tottered out cause my legs were quite a bit atrophied and my whole body was. Barby Ingle (09:18): But I was able to walk out on my own and I was so proud of that moment. I had to come in and out of remission since December 2009 and I still have a scooter that I use when needed, but I am managing much better now that I have a good group of treatments that are working for me. Janet Kennedy (09:39): So help me understand how you made the transition from being focused on your own health to helping other patients deal with their issues. Barby Ingle (09:50): I advocate for myself first and then I joined a local support group and realized that I had a lot to offer to the group because of everything I had been through, but I didn't quite get what I needed out of it. So I reached out to a larger organization for RSD and said, you know, I'd like to be a mentor to mentor other patients. Barby Ingle (10:15): And I took on mentoring three patients, one of whom is still to this day, my best friend, and we keep in touch almost daily and it worked out. But I started by mentoring other patients and just being someone that they could talk to and someone that I could talk to and growing that into - I started to get asked to speak at events, at other people's support groups at different conferences and things that are happening in the pink community at large, not just for my disease specifically. And in sharing my story, it just really opened up a whole new Avenue of reach of people that didn't know what this is somewhat, you don't know that you need it until you're in the midst of it. And sometimes when you get into a situation where you're challenged, it's hard to see all the tools that are around you. Barby Ingle (11:09): So I kind of found them slowly moving through my own story and I said I have to help other people. No one should go through what I went through. Janet Kennedy (11:18): So I'm curious, how do we refer to chronic pain? Is it a disease? Barby Ingle (11:22): Well, chronic pain is actually now in the ICD 11 a diagnosis in and of itself. You can be diagnosed with chronic pain as an ICD code and insurance covers different treatments and things that are pertaining to that code. So it actually is a disease in itself or it can be secondary to another condition. Janet Kennedy (11:41): Well Barby, tell me about the International Pain Foundation. What is that organization? The International Pain Foundation started back in 2006 and that was just when my advocacy was starting and it was started in my honor by family members, but it soon grew to something that's much bigger, which at first it was called the power of pain foundation because I believe that pain made me a better person and more patient. Barby Ingle (12:08): And that's the message that I was spreading. My family every year would pick a charity project going into a nursing home or serving food at a homeless shelter that we could do as a family, and that year the family said, look, if Barby had this much trouble there, have to be other patients out there having trouble, so let's do something that will help them. And it's grown from just a small family organization in my honor to me actually running it and now it's an international organization with people from all over the world submitting articles, submitting quilt project pieces and crafts and education and all kinds of awareness opportunities. It really has grown from this little small family idea and project into this global network. Janet Kennedy (12:59): Oh, that's awesome. Because I think that's what patients have really demonstrated to the industry is that they will find their solutions. They will find their networks, they will join together with peer groups and solve their own problems if you won't solve them for me. Barby Ingle (13:17): Absolutely. Sometimes I wonder and now I work with pharmaceutical companies to help with clinical trials and help people become aware of those clinical trials that are going on. But before it was involved in, I didn't quite understand the clinical trial process. I would wonder why are they not listening to the patient's voice? And I think over the last few years the pharmaceutical industry has made a special effort to pay attention to what the patient voices and have patients and caregivers on their advisory boards for a clinical trial. Getting it set up and getting it organized and all the way through to the end when the results are produced or their item medication came to market or I've been involved with trials that actually didn't make it to market, but I've seen that whole entire process and been a part of it and was one of those patient voices in that process. Janet Kennedy (14:13): Tell me a little bit about your experience as a patient in a clinical trial. You don't have to name names, but I'm more curious about what did you feel was done well and what do you feel may be missed the mark as far as considering the "patient first" perspective? Barby Ingle (14:29): There's so many things. The biggest, thing is the disparity. Clinical trials should mirror the patients that will be the end-user and so many times clinical trials miss that mark and they want people in their trial who will do well on the medication, but it doesn't necessarily serve the population. For instance, we know that people that are African American or black will have sickle cell disease more often than somebody who's white, but less black people will participate in the clinical trials so when they come up with a solution that could be viable for sickle cell, it hasn't been tried on the actual population. That's the majority population for that disease or condition. So I think that's one of the things is the disparity. Also, a lot of people are limited from being a part of the clinical trials because they don't have transportation or access to the trials themselves. Barby Ingle (15:33): They're usually held in the bigger cities and that has a certain population and income level and education level. So you get less of the smaller town, rural patient population. Being a part of those clinical trials? Janet Kennedy (15:49): Well, I think from your experience too, you probably weren't solo-ambulatory, so you needed someone's help. So that's two people. Barby Ingle (15:58): Yes. And that's what I meant by transportation because I have a seizure disorder. My seizures disorder didn't start until 2014 but I had migraines right after my auto accident, but I wasn't able to drive for many years because when I twisted my head to the right, I would pass out while to change lanes, you need to be able to look and see what's next to you. So I didn't drive a lot. So I do, I rely on my caregiver and now I have a seizure disorder. Barby Ingle (16:28): So I drive even less. But if he wasn't able to take me and have a vehicle to put my scooter in or my wheelchair in, then I wouldn't be able to go. I did try to take a taxi once to a doctor's appointment and it was $126 to go less than 20 miles. Wow. And my husband now. I was able to find love in the midst of all of that pain and chaos and he's the most amazing caregiver ever. He said, you know, I will take off work for $126 like this is ridiculous. Never, ever, ever take a taxi again. We just had to find ways around it and work out a better way, but if you don't have somebody that can do that or their job doesn't let them off, then getting to the appointments can be quite a challenge to participate in the clinical trial. Janet Kennedy (17:20): Barby, you're very savvy out there in the wide world, following social media, following the innovations that are happening. Do you see any improvements for patients with all of the digital health technology that's being developed? Barby Ingle (17:34): Absolutely. I think that some of the clinical trials are coming on board and they're allowing patients to do the trials from home. They're sending them kits where they can do the monitoring from home and it can work on an app on their phone and report the results to the researchers and or their providers. If the researchers find something, they can report it back to the patient's provider to get immediate care. So we're starting to see some of those types of trials come into fruition and I think this year especially telehealth has exploded and hopefully the clinical trial process follows that same path and works in telehealth into their system so that patients that are more rural can get involved in the clinical trial so that the trials can mirror better the types of patients that are the end-user of that product. Janet Kennedy (18:32): Well, that is exactly what we hope at Spencer health solutions as well. Our Spencer device allows for medication delivery also allows for patient engagement via asking questions after someone has taken their med delivery and there's a telehealth feature and can even tie into biometric devices. So there are a lot of options there to hopefully make it easier for in-home clinical trials. Before I go, I want to know a little bit more about the Ken and Barby Show. Tell me what this is. I don't think I've ever spoken to a reality TV star. So I want to know what this program is and how it got started. Barby Ingle (19:11): Yes. So I've been on multiple television stations, like game show network and TLC and WB, CBS, ABC, NBC. But my husband, Ken and I were "Ken and Barby", and we participate in the Ken and Barby Show. It is a show that is lighthearted. It covers our adventures together and raises awareness, but not necessarily in an upfront, in your face kind of way. So we talk about different conditions and things that I'm personally going through with my health or Ken as a caregiver, some of the challenges that he's faced. But it's also, we found ourselves because of the advocacy work in quite some interesting positions and situations and have been able to meet a lot of great people who have also use their platforms to raise awareness and spread the information that they need about their condition. So we're very funny together, very interactive with our viewers. Barby Ingle (20:11): Sometimes we play games, we give out prizes. We're on season nine some of our seasons. We've had sponsors this season that we're on right now. We decided to not have a sponsor for this season. It's just Ken and Barby raw all summer long and we just want to bring positivity into everybody's life and be cheerleaders of hope - or Ken calls himself a "Care Leader of Hope". We do that in a lighthearted, fun, positive way and it gets people's minds off of the pain, but we also have people that don't have chronic pain of any kind and they're tuning in and watching and we're reaching a larger audience than just our silo of patients and their caregivers. So we're actually planting seeds and we're hoping that when that person needs the information one day that they will remember some of the topics and things that we brought up during the show. Janet Kennedy (21:07): Oh, that sounds great. Well as people know who listened to the podcast, I will have links in the show notes that will take people to not just your social media profiles, but we'll make sure that we've got a link to a couple of your cool blog posts about clinical trials and of course to the Ken and Barby Show. Barby Ingle (21:24): Thank you so much. Janet Kennedy (21:25): Oh, Barby, thank you so much for being here and I really, really enjoyed having you as a guest on "People Always, Patients Sometimes", and really look forward to meeting you in real life when we get back into face to face situations. Barby Ingle (21:41): Awesome. I can't wait to meet you as well. Thank you so much, Janet. This has been a great time. Contact Barby Ingle Website LinkedIn Twitter: International Pain Foundation Twitter: Barby Ingle

Accessible Yoga: Honor Your Body

Play Episode Listen Later Jan 26, 2020 26:24

Melissa Reynolds talks Yoga. With chronic pain and fatigue, there's such a variation. Some people are always at high levels of pain. Some people vary. There are various stages within fibromyalgia and chronic pain and chronic fatigue. Plus, you have other things going on. Some people also have arthritis where their chronic pain comes from. Or there are other complexities. You can't say, “this is how you do yoga for chronic pain.” Key is letting people see that they have choices, so there's never a push. They don't need to be aiming for anything. They need to listen to their body and do what jells with their body. What feels nice? For too long, we've been told you have to push yourself. You've got to get to this point. This is your goal. I'm sick of external goals I want to work on my own goals. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Melissa Reynolds revisited 00:52. 1 Another tool: Yoga 02:47. 1 Keyword: Accessible 08:20. 2 Recruiting students 16:49. 4 Trying stuff that didn't work before 20:10. 5 Sleep routine 22:45. 5 Reflections 25:03 6 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Alison Rhodes, Amy Baxter, Barby Ingle, Lauren Reimer Etheridge, Lisa Deck, MarlaJan Wexler, Nancy Michaels Links Free five minutes a day for five days challenge https://melissavsfibromyalgia.teachable.com/p/yoga-for-chronic-pain-and-fatigue-challenge/ Learn how to "do" yoga and make your own toolkit in Foundations of Yoga for Chronic Pain and Fatigue https://melissavsfibromyalgia.teachable.com/p/foundations-of-yoga-for-fibromyalgia/ Related podcasts and blogs https://health-hats.com/fibromyalgia-managing-pain-doing-the-work/ https://health-hats.com/pain-the-solution-many-solutions/ https://health-hats.com/managingpain1pov/ https://health-hats.com/adjusting-to-new-chronic-illness/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Melissa Reynolds revisited When I worked as a nurse and a paramedic in the Emergency Department, in the ICU, and ambulances,

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Accessible Yoga: Honor Your Body

Play Episode Listen Later Jan 26, 2020 26:24

Melissa Reynolds talks Yoga. With chronic pain and fatigue, there's such a variation. Some people are always at high levels of pain. Some people vary. There are various stages within fibromyalgia and chronic pain and chronic fatigue. Plus, you have other things going on. Some people also have arthritis where their chronic pain comes from. Or there are other complexities. You can't say, “this is how you do yoga for chronic pain.” Key is letting people see that they have choices, so there's never a push. They don't need to be aiming for anything. They need to listen to their body and do what jells with their body. What feels nice? For too long, we've been told you have to push yourself. You've got to get to this point. This is your goal. I'm sick of external goals I want to work on my own goals. Blog subscribers: Listen to the podcast here. Scroll down through show notes to read the post. Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my podcast. CONTRIBUTE HERE Episode Notes Prefer to read, experience impaired hearing or deafness? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Melissa Reynolds revisited 00:52. 1 Another tool: Yoga 02:47. 1 Keyword: Accessible 08:20. 2 Recruiting students 16:49. 4 Trying stuff that didn’t work before 20:10. 5 Sleep routine 22:45. 5 Reflections 25:03 6 Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, Boston Drummer, Composer Sponsored by Abridge Thanks to these fine people who inspired me for this episode: Alison Rhodes, Amy Baxter, Barby Ingle, Lauren Reimer Etheridge, Lisa Deck, MarlaJan Wexler, Nancy Michaels Links Free five minutes a day for five days challenge https://melissavsfibromyalgia.teachable.com/p/yoga-for-chronic-pain-and-fatigue-challenge/ Learn how to "do" yoga and make your own toolkit in Foundations of Yoga for Chronic Pain and Fatigue https://melissavsfibromyalgia.teachable.com/p/foundations-of-yoga-for-fibromyalgia/ Related podcasts and blogs https://www.health-hats.com/fibromyalgia-managing-pain-doing-the-work/ https://www.health-hats.com/pain-the-solution-many-solutions/ https://www.health-hats.com/managingpain1pov/ https://www.health-hats.com/adjusting-to-new-chronic-illness/ About the Show Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Melissa Reynolds revisited When I worked as a nurse and a paramedic in the Emergency Department,

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Danny van Leeuwen - Healthhats the Podcast, A Sampler

Pod Buffet

Play Episode Listen Later Jan 2, 2020 6:05

Welcome to Health Hats, the Podcast, learning on the journey towards best health. We will learn what it takes to adjust to life's realities in the awesome circus of health care. Follow Health Hats, the Podcast on your favorite player. I am Danny van Leeuwen, a patient-caregiver activist, a patient with Multiple Sclerosis, care partner to my grandmother, mother, and son’s end-of-life journeys, a registered nurse, a person with health technology experience, and a leader in healthcare administration. I wear many hats. My guests and I muse about making health choices and decisions, communicating health information, sharing what works, and supporting each other. This episode is a sampler of interviews with Barby Ingle about managing pain; Jan Oldenburg about an integrated care plan; Janice Tufte about patient partnerships in research; Jane Beddall about managing conflict; and Amy Faeskorn about health and improvisation. I podcast to make a ruckus. Making a ruckus means sharing stories of learning on the journey towards best health. I'm trying to move the needle of health care a couple of degrees towards more self-confidence, more participation, more collaboration, more dignity and more inclusion. Wait a minute. I should tell you the truth. I'm a selfish person at heart. I'm a storytelling, patient, caregiver activist, living at peak capacity. I couldn't say that before my diagnosis. I podcast mostly for myself. My show notes are comprehensive with a full transcript and many resources. Find the recent podcasts here https://www.health-hats.com/pod and show notes for this sampler hereFollow my blog, podcasts and resources through my website. See around the block.

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Overtreated, Untreated, and Mistreated

Play Episode Listen Later Sep 15, 2019 36:50

Before her auto accident that caused chronic pain and subsequent surgeries, Barby Ingle was no stranger to pain. After her accident, Barby felt overtreated, untreated, and mistreated. She took control of her medical management and replaced drug pain solutions with physical pain solutions. She repurposed her media savvy to heal herself and engage others. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, hard-of-hearing or deaf? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Barby Ingle 00:52. 1 8 seconds changed my life 04:35. 2 Overtreated, untreated, and mistreated 07:08. 3 Finding words to describe pain 08:08. 3 Physical solutions to pain 10:35. 4 Virtual reality therapy 11:20. 4 Reality TV 14:49. 5 Color-coding my life 16:26. 5 Not everyone wants, needs help, your help 19:59. 5 Kids learning to take charge 24:27. 7 Hope and help 26:50. 7 Health means drinking water 30:55. 8 A bit about me 32:40. 8 Reflections 35:30 9 Links http://barbyingle.com/ International Pain Foundation The Extreme Time Cheaters Reality Show with Ken and Barby From Wheels to Heals: A Chronic Pain Patient's Story of Hope, Help, and Understanding; ReMission Possible: Yours. If You Choose To Accept It; Aunt Barby's Invisible, Endless Owie WEGO Health Abridge Notes Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer About the Show Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in healthcare's Tower of Babel. Let's make some sense of all this. To subscribe go to https://health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Introducing Barby Ingle Before her auto accident that caused chronic pain and subsequent surgeries, Barby Ingle was no stranger to pain. She was an athlete, a business owner, event coordinator and head cheerleading coach at Washington State University's Spirit Program. Barby authored the Cheertec Coaches' Handbook and a six-part DVD Series on cheerleading. Barby now lives with reflex sympathetic dystrophy (RSD), migralepsy (a rare condition in which a migraine is followed within an hour by a seizure), endometriosis (inflammation of the uterus), and other pain disorders. After her accident, Barby felt overtreated, untreated, and mistreated. She took control of her medical management and replaced drug pain solutions with physical pain solutions. She repurposed her media savvy to heal herself and engage others with the *Ken and Barby Reality TV show*; wrote From Wheels t...

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Overtreated, Untreated, and Mistreated

Play Episode Listen Later Sep 15, 2019 36:50

Before her auto accident that caused chronic pain and subsequent surgeries, Barby Ingle was no stranger to pain. After her accident, Barby felt overtreated, untreated, and mistreated. She took control of her medical management and replaced drug pain solutions with physical pain solutions. She repurposed her media savvy to heal herself and engage others. Blog subscribers: Scroll down through show notes to read the post. If you'd like to listen to the podcast, click here or the title Subscribe to Health Hats, the Podcast, on your favorite podcast player Please support my blog and podcast. CONTRIBUTE HERE Episode Notes Prefer to read, hard-of-hearing or deaf? Find FULL TRANSCRIPT at the end of the other show notes or download the printable transcript here Contents with Time-Stamped Headings to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript) Introducing Barby Ingle 00:52. 1 8 seconds changed my life 04:35. 2 Overtreated, untreated, and mistreated 07:08. 3 Finding words to describe pain 08:08. 3 Physical solutions to pain 10:35. 4 Virtual reality therapy 11:20. 4 Reality TV 14:49. 5 Color-coding my life 16:26. 5 Not everyone wants, needs help, your help 19:59. 5 Kids learning to take charge 24:27. 7 Hope and help 26:50. 7 Health means drinking water 30:55. 8 A bit about me 32:40. 8 Reflections 35:30 9 Links http://barbyingle.com/ International Pain Foundation The Extreme Time Cheaters Reality Show with Ken and Barby From Wheels to Heals: A Chronic Pain Patient’s Story of Hope, Help, and Understanding; ReMission Possible: Yours. If You Choose To Accept It; Aunt Barby's Invisible, Endless Owie WEGO Health Abridge Notes Please comments and ask questions at the comment section at the bottom of the show notes on LinkedIn via email DM on Instagram or Twitter to @healthhats Credits Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer About the Show Welcome to Health Hats, empowering people as they travel together toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life's realities in healthcare’s Tower of Babel. Let's make some sense of all this. To subscribe go to https://www.health-hats.com/ Creative Commons Licensing The material found on this website created by me is Open Source and licensed under Creative Commons Attribution. Anyone may use the material (written, audio, or video) freely at no charge. Please cite the source as: ‘From Danny van Leeuwen, Health Hats. (including the link to my website). I welcome edits and improvements. Please let me know. danny@health-hats.com. The material on this site created by others is theirs and use follows their guidelines. The Show Introducing Barby Ingle Before her auto accident that caused chronic pain and subsequent surgeries, Barby Ingle was no stranger to pain. She was an athlete, a business owner, event coordinator and head cheerleading coach at Washington State University’s Spirit Program. Barby authored the Cheertec Coaches' Handbook and a six-part DVD Series on cheerleading. Barby now lives with reflex sympathetic dystrophy (RSD), migralepsy (a rare condition in which a migraine is followed within an hour by a seizure), endometriosis (inflammation of the uterus), and other pain disorders. After her accident, Barby felt overtreated, untreated, and mistreated. She took control of her medical management and replaced drug pain solutions with physical pain solutions. She repurposed her media savvy to heal herself and engage others with the *Ken and Barby Reality TV show*; wrote From Whee...

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Migralepsy

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Play Episode Listen Later Aug 12, 2019 24:23

In this episode we will discuss Migraines with Epilepsy, sometimes called Migralepsy with Barby Ingle. Migralepsy is a rare condition in which a migraine is followed, within an hour period, by an epileptic seizure. Because of the similarities in signs, symptoms, and treatments of both conditions, such as the neurological basis, the psychological issues, and the autonomic distress that is created from them, they individually increase the likelihood of causing the other. However, also because of the sameness, they are often misdiagnosed for each other, as migralepsy rarely occurs.

Complex Regional Pain Syndrome

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Play Episode Listen Later Aug 5, 2019 27:30

In this episode we will discuss Complex Regional Pain. Our Guest, Barby Ingle returns from a previous episode on Endometriosis. Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury. CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems. The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body. CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area. CRPS is divided into two types: CRPS-I and CRPS-II. Individuals without a confirmed nerve injury are classified as having CRPS-I (previously known as reflex sympathetic dystrophy syndrome). CRPS-II (previously known as causalgia) is when there is an associated, confirmed nerve injury. As some research has identified evidence of nerve injury in CRPS-I, it is unclear if this disorders will always be divided into two types. Nonetheless, the treatment is similar. CRPS symptoms vary in severity and duration, although some cases are mild and eventually go away. In more severe cases, individuals may not recover and may have long-term disability.

Endometriosis

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Play Episode Listen Later Jul 29, 2019 22:59

In this episode we will discuss endometriosis. Endometriosis is a disease in which tissue similar to the lining of a woman's uterus grows in other places in the body. It is one of the most common gynecological diseases, and its primary symptoms include pain and infertility. Our guest today is Barby Ingle, a chronic pain warrior! Barby is an author, reality personality, and lives with reflex sympathetic dystrophy (RSD), migralepsy, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an ePatient advocate, and she now travels the country attending healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received 19 accommodations over the years for her advocacy work

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Barby Ingle: "The Chronic Pain Cheerleader"

HealtheVoices Radio

Play Episode Listen Later Mar 1, 2019 61:00

Barby Ingle is a best selling author, reality personality, and lives with reflex sympathetic dystrophy (RSD), migralepsy, endometriosis and other pain disorders. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. Her blog, reality shows and media appearances are used as a platform to help her become an ePatient advocate, and she now travels the country attending healthcare conferences, speaking publicly, sharing her story, educating and advocating for patients across the globe. She has received 19 accommodations over the years for her advocacy work including; 2011 iPain Hero of Hope Award, 2012 WEGO Health Ms. Congeniality, 2012 NAF You Are Our Hero Award, 2013 International Inspirational Luminary, 2015 IDA Impact Award, and 2016 WEGO Health Lifetime Achievement. In 2017, Barby was named a Health Information Technology Top 100 Influencer by HealthScene and Top 20 Health Influencer by Insider Monkey Magazine. In 2018, Barby received the Reality All Star Reunion Superstar award for Most Social Media posts and Top 50 Chronic Pain Advocates. In Feb. 2019, Barby is listed in the top 100 social media advocates for Rare Diseases.

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Episode 485 - With Barby Ingle

Just Talking Podcast

Play Episode Listen Later Jan 29, 2019 37:15

Barby Ingle joins me this week for a conversation about living with endomitriosis and reflex sympathy disorder, the ongoing stigma facing women with chronic pain, creating the International Pain Foundation, and preparing for the upcoming International Pain Summit. Learn more about the International Pain Foundation at internationalpain.org. Run Time - 37:15 Send your feedback to feedback@justtalkingpodcast.com.

Replay: Barby Ingle President International Pain Foundation talks _How to Save Thousands on Your Medical Bills_

Play Episode Listen Later Feb 28, 2018 52:48

Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”

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Replay: Barby Ingle President International Pain Foundation talks _How to Save Thousands on Your Medical Bills_

Play Episode Listen Later Feb 28, 2018 52:48

Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”

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Replay: Barby Ingle President International Pain Foundation talks _How to Save Thousands on Your Medical Bills_

Play Episode Listen Later Feb 28, 2018 52:48

Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”

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Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”

medical bills save thousands barby ingle international pain foundation

Play Episode Listen Later Aug 16, 2017 52:47

Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”PLUS 5 Minutes of Personal Finance: “Life Insurance: Term Life vs Whole Life - What's the Difference?”

Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”

medical bills save thousands barby ingle international pain foundation

Play Episode Listen Later Aug 16, 2017 52:47

Barby Ingle President International Pain Foundation talks “How to Save Thousands on Your Medical Bills”