Joanna Behm, EDD OTR/L and Madison Thornton, OTD, OTR/L are experts in occupational therapy (OT) as therapists, dysautonomia patients, and Joanna is even a professor of OT. Together they created a workbook that first shares the latest evidence and then leads readers through a series of worksheets and questions to help them find their best OT-based solutions and routines for living better with dysautonomia and related challenges. In this episode they explain occupational therapy, the workbook, and share many examples of how patients can get the most from it, and from an OT mindset in general.

The Dysautonomia Workbook is available here, and other handbooks and handouts created by Joanna and her team are available here.

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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Casey Kelley is Board Certified in family and integrative medicine, teaches on the faculty of the Northwestern Medical School, and her care is informed by her own past experience having complex chronic invisible illness. Now she treats some of the very toughest cases, including Lyme, POTS, PANS/PANDAS, MCAS and more. In this episode she and Dr. Dempsey discuss cutting-edge treatment approaches for these conditions in pediatric patients, and we highly recommend this episode for anyone wanting to hear the latest thinking in treatments for these young patients. Dr. Kelley's website is here.

Dr. Dempsey's website is here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

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Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Surviving severe COVID was just beginning of Sophie's health adventure. She discusses her unexpected COVID-related medical challenges, new job and living situation, the stenting procedure that helped (but not as much as hoped), how she has adjusted to her new situation and how it all has made her even better at her work in healthcare.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

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Find out more about Standing Up to POTS! Check us out on our
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Attorney Nancy Cavey has spent 39 years representing people with disabilities all over the U.S., and is an expert in helping people qualify based on POTS, MCAS, hEDS and other invisible illness. In this episode she describes the process, how to maximize your chances of success, common pitfalls, important deadlines and more. We will have a part 2 with Nancy's colleague in a few weeks, to address disability benefits for people under age 18. Nancy's book about disability benefits for POTS is here. Nancy's website is here.

Nancy has also written the following free e-books about:

• Robbed of Your Peace of Mind

• The Disability Insurance Claim Survival Guide for Professionals

• Your Rights to Social Security Disability

• Postural Orthostatic Tachycardia Syndrome Booklet

• Dysautonomia Pamphlet

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Western folk singer-songwriter Nellie has recorded multiple albums and EPs, toured nationally from Alaska to Nashville, appeared on PBS’s Songs at the Center, opened for Grammy-nominated artists, and become a beloved regular at the Woody Guthrie Folk Festival. Most recently, she was profiled in Forbes for her life as an artist living with postural orthostatic tachycardia syndrome, bringing huge mainstream attention to POTS in the process. In this episode she shares her thoughts, experiences and wisdom on living with POTS, adjusting to major life changes, staying strong, redefining oneself and much more.

Nellie's article in Forbes is here.

Nellie's "Freedom Song" music video is here.

Nellie's music is available for purchase here.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Dr. Spiritos is double board certified in gastroenterologist and internal medicine, and specializes in IBS, gut motility, POTS and the complex conditions and symptoms that go along with it. He and Dr. Dempsey discuss IBS, parasites, SIBO, CD117 staining, GLP-1 drugs for MCAS, his treatment approach, some promising news on the awareness front, and much more.

Dr. Spiritos's website is here

Dr. Dempsey's website is here

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
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Vascular surgeons Dr. Robert Hacker and Dr. Deena Chihade share their unusual path to POTS via looking at the venous system, and explain what they are seeing in patients before and after addressing venous compression syndromes such as May Thurner Syndrome and Nutcracker Syndrome. Dr. Hacker estimates that venous obstructions may play a role in more POTS patients than previously thought, and Dr. Chihade shares the research study she presented at the Dysautonomia International poster session. Both doctors explain how their clinic tests and treats patients for potential compressions and what the stenting procedure is like. Their website is https://stlvascular.com/.

If you liked this episode, we hope you will click subscribe so that you don't miss an episode. If you are so moved, donations are accepted to help to support our production costs https://www.standinguptopots.org/donate

Tell us what you think of The POTScast or send us your idea at info@standinguptopots.org!

Find out more about Standing Up to POTS! Check us out on our
Website: www.standinguptopots.org
Facebook: https://www.facebook.com/standinguptopots/
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
Pintrest: https://www.pinterest.com/TheStandingUpToPOTS/

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.

Sarah loved her life as a busy mom an accomplished professional dog groomer, but after COVID left her with new symptoms suggestive of the 'Trifecta' (POTS, MCAS, hEDS) she is needing to make a new game plan....one that doesn't involve so many hours of standing and triggering fragrances. In this episode she discusses what she went through to get a diagnosis and how -- with the help of supportive family -- she is working through the challenges to design a new lifestyle.

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Find out more about Standing Up to POTS! Check us out on our
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Twitter: https://twitter.com/POTSActivist
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Medical Disclaimer: The information provided here is not intended to serve as professional medical advice, diagnosis, or treatment. If you have health related issues, please contact a qualified health professional to get the personalized assessment, advice, and treatment that you need. Standing Up to POTS will not be liable for any direct, indirect, or other damages arising from the use of this podcast.