Podcast appearances and mentions of billy alletzhauser

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Best podcasts about billy alletzhauser

Latest podcast episodes about billy alletzhauser

HSCT Warriors
Meet Anthony and learn about the various tools he embraced to battle MS (Ep. 108)

HSCT Warriors

Play Episode Listen Later Mar 30, 2025 74:39


Warrior: Anthony Ramirez AI: caregiver for son with MS HSCT: December 12, 2016 Superpower: resilience To what extent do you appreciate the journey? What version of yourself do you present to the world? After a concussion landed Anthony in the ER, his diagnosis of multiple sclerosis was not easy to understand, especially when the disease-modifying drugs did not work like other medications. As he dove into research to try to find more answers, he and his mom Cindi (see Episode 107) happened upon a brief mention of Dr. Burt's research at Northwestern University and committed to learn everything possible about the latest treatments. Tune in to hear more of Anthony's journey through HSCT and how he is faring now, nearly 9 years post-transplantand learn how her son is doing nearly nine years after undergoing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Ataxia Center, Johns Hopkins

HSCT Warriors
Connect with Cindi to learn how she continues to advocate for her son (Ep. 107)

HSCT Warriors

Play Episode Listen Later Mar 26, 2025 58:36


Warrior: Cindi Ramirez AI: caregiver for son with MS HSCT: December 12, 2016 Superpower: resilience How determined are you to find the best care? When her son suffered a concussion at a company picnic, a CT scan revealed a diagnosis of Multiple Sclerosis. Determined to get him the best care, Cindi sought out top-tier treatment at the Cleveland Clinic, but even with disease-modifying therapies, his symptoms continued to progress. After months of research, Cindi came across a webinar discussing stem cell research led by Dr. Burt at Northwestern University, and together they decided to pursue HSCT. Tune in to hear Cindi's heartfelt journey as both a mother and caregiver, and learn how her son is doing nearly nine years after undergoing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Meet Larry and learn what inspired him to make HSCT more accessible (Ep. 106)

HSCT Warriors

Play Episode Listen Later Mar 9, 2025 61:12


Warrior: Larry Powalisz AI: Primary Progressive Multiple Sclerosis HSCT: May 2022 Superpower: humbled by MS How dedicated are you to health and wellness? How committed are you to helping people halt autoimmune disease? After Larry's left hand went numb and he was diagnosed with MS, the only option his neurologist offered was Ocrevus. His research led him to HSCT at Clinica Ruiz. Upon returning home, Larry was inspired to help others gain access to HSCT and he founded a nonprofit organization to help cover the costs, but soon learned that fundraising for HSCT was not enough. He then founded Adia Med, now a publicly traded company to offer HSCT and other treatments to people battling autoimmune diseases. Tune in to learn more about Larry's journey with HSCT, how he is a guinea pig at Adia, and his dedication to making HSCT more accessible to individuals with autoimmune disease. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to audio guru Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Adia Med outpatient HSCT clinic in Winter Park, Florida MS Heal the World nonprofit organization MS Hope and the Best Bet Diet for MS Brandon Bieber, neurologist Aaron Boster, neurologist Richard Burt, Everyday Miracles

HSCT Warriors
Check-in with Ali at more than seven years post-HSCT as we launch our twelfth season (Ep. 105)

HSCT Warriors

Play Episode Listen Later Mar 4, 2025 51:06


Warrior: Ali Strong AI: Multiple Sclerosis HSCT: November 2017 Superpower: wellness When doctors aren't able to answer your questions, who do you turn to? Are you someone who strives to find answers? Do you find the present in each day? The beginning of a new season offers the opportunity to check in with Ali and how she is faring, more than seven years post-HSCT. Tune in to learn how HSCT has shifted her symptoms and experience with MS, gain updates on Ali's health and approach to wellness, and learn how she is focusing her energy these days. Be sure to visit HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, and connect with resources and the HSCT Warriors Inc nonprofit. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, and audio genius Jacob Kinch for sharing his superpowers to edit and produce the audio to make this podcast possible. Find us and subscribe to the HSCT Warriors Podcast on SoundCloud, iTunes, or wherever you find podcasts. It has been great to connect with Warriors worldwide and we would love to hear from you about how the podcast has helped your journey with autoimmune disease… take a moment to connect with us on instagram or share this episode with someone you know that would enjoy listening. In the meantime, we hope you'll tune in for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician immediately.

HSCT Warriors
Connect with Veena and learn how she embodied a positive mindset through HSCT (Ep. 104)

HSCT Warriors

Play Episode Listen Later Jul 24, 2024 44:15


Warrior: Veena Kinni AI: Multiple Sclerosis HSCT: Cleveland Clinic, 2021 Superpower: ability to know inner strength How fully do you embrace opportunities to enjoy life? How do you promote a positive mindset? As a trained physician, it was hard for Veena as she transitioned to being a patient after she was diagnosed with multiple sclerosis in December of 2011. She began on a disease-modifying therapy that she paused in order to get pregnant, though soon after delivering her daughter, her symptoms flared. Between 2014 and 2020, Veena's condition continued to deteriorate until 2020 when she visited a neurologist at the Cleveland Clinic who suggested HSCT and embraced the opportunity with an ‘ignorance is bliss' mindset. While she believes that it halted the progression of her disease, and shows no active lesions on MRI, the procedure and recovery have been challenging for Veena, which she attributes to being in the secondary progressive phase of disease. Tune in to learn more about Veena's experience, her transition to JC+ during treatment with disease modifying therapy, and why she agrees that pursuing HSCT sooner in the course of the experience with autoimmune disease to avoid lasting damage. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Center for Regnerative Biotherapeutics Vinna Kinni, MD Multiple Sclerosis Defeater (blog)

HSCT Warriors
Meet Janet and learn more about how she eliminated stress along her path to HSCT (Ep. 103)

HSCT Warriors

Play Episode Listen Later Jul 12, 2024 109:07


To what extent are you able to eliminate stress from your life? Do you believe you can achieve whatever you put your mind to? To what extent are you aware of treatment options? Despite noticing some symptoms that interfered with walking and mobility, Janet postponed seeing doctors until after she retired from being a police officer. While Janet did not find her career to be stressful, she did experience intense stress in her relationships and personal life. Once Janet came down with bouts of hives caused by intense, long-sustained stress, she began taking steps to reduce and eliminate stress from her life. Over time, Janet experienced other stressors and symptoms (like foot drop and optic neuritis) that she was able to explain away at the time they occurred, but upon reflection, realized they were all related to her eventual diagnosis of multiple sclerosis in March of 2020. Tune in to learn more about how Janet explored options for HSCT in the US and Mexico, prepared her body physically for HSCT, developed strong feelings about accessibility to HSCT, found motivation to write a book about her experience and help others, and ended up having a complete reversal of symptoms. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Connect with Christian to learn more about his mindful approach to HSCT in Calgary (Ep. 102)

HSCT Warriors

Play Episode Listen Later Mar 20, 2024 60:29


Warrior: Christian AI: Multiple Sclerosis HSCT: 11/3/23 at the Tom Baker Cancer Center in Calgary Superpower: body awareness What is your capacity for listening to your body? How well do you fare through complications? How comfortable are you with looking inward? After the numbness and tingling in his legs restricted his capacity to walk in the course of just a few weeks, Christian was quickly diagnosed after finding the right doctor who knew what his symptoms were indicating. After cycling through a variety of disease-modifying therapies over the course of seven years, Christian continued relapsing. After the humbling and terrifying experience of being wheelchair-bound for a few months in December of 2022, Christian switched DMTs again and after it didn't stop new lesions, he was eventually referred for HSCT in Calgary in June of 2023. Tune in to learn more about the circumstances that led Christian to pursue HSCT in Calgary, and how he fared through the myeloablative protocol, including complications and resolutions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Connect with Fiona to learn more about perseverance and Marburg's variant of MS (Ep. 101)

HSCT Warriors

Play Episode Listen Later Mar 13, 2024 78:27


Warrior: Fiona Mitten AI: Marburg's variant of Multiple Sclerosis HSCT: 12/29/2011 Superpower: living in the moment Are you someone who believes that everything happens for a reason? How many moments do you treasure each day? Diagnosed 18 years ago after being hit by a drunk driver, several symptoms of multiple sclerosis like optic neuritis and paralysis onset and progressed so quickly, it seems Fiona's experience was extra unique from the start. From bouts of total paralysis that kept her hospitalized for months at a time, to relief from rounds of chemotherapy that had her walking again, to severe withdrawal that led to chemo-induced psychosis, by the time Fiona found her way to HSCT, she was struggling to walk (a requirement to pass the testing in order to qualify for HSCT). Tune in to learn how Fiona became the third person to be transplanted outside of the trials in Calgary, how she fared with HSCT and recovery, and how she is doing twelve-plus years post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore information about locations. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Check-in with Ali at more than six years post-HSCT as we launch our eleventh season (Ep. 100)

HSCT Warriors

Play Episode Listen Later Mar 6, 2024 67:53


Warrior: Ali Strong AI: Multiple Sclerosis HSCT: November 2017 Superpower: boundaries Are you someone who feels your emotions? Are you one to choose happiness? Do you find the present in every moment? The beginning of a new season offers the opportunity to check in with Ali and how she is faring, more than six years post-HSCT. Tune in to revisit the struggles with active multiple sclerosis, hear how HSCT has shifted her symptoms and experience with MS, and learn how Ali is focusing her energy these days. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and to Jacob Kinch for engineering the audio to make this podcast possible. You can find us when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

97X - Rumblings from the Big Bush
Billy and Beth of The Hiders

97X - Rumblings from the Big Bush

Play Episode Listen Later Jun 30, 2023 32:22


It sounds like the setup to a joke: "A punk rock guitarist and a preacher's daughter walk into a theater..." But when Billy Alletzhauser and Beth Harris starting singing songs together in 2004, the result was pure magic. Their band, The Hiders, is the Kevin Bacon of music, with connections to Ass Ponys, The Afghan Whigs, Throneberry, Wussy, Heartless Bastards, Band of Horses, Plow On Boy, Comet Bluegrass All-Stars, Pearlene and more. And their sound is an amazing amalgamation of folk, country, rock, psychedelia, bluegrass, and indie rock. We talked to B & B about their start, the band's evolution, Billy's Ass Ponys tenure, Beth's harmony vocal work with Erika Wennerstrom and Heartless Bastards, the Hiders most recent album (2021's Forever at the End) and their plans for the year ahead.

HSCT Warriors
Meet Matt and be inspired to find peace of mind (Ep. 99)

HSCT Warriors

Play Episode Listen Later Mar 15, 2023 46:17


Warrior: Matt LeFrance AI: Multiple Sclerosis HSCT: June-July 2022 Superpower: peace of mind How do you know what to expect? From whom do you seek feedback? How do you decide to take the next step? Diagnosed just after college at the young age of 25 when he experienced double vision and a variety of doctors had a hard time understanding what was going on, Matt was diagnosed after a MRI revealed a lesion on his brain stem. As he pondered what was next, despite feeling as though life was ending when it should be only just beginning, Matt spent time researching his options for treatment before aging out of insurance coverage. Tune in to learn more about Matt's research efforts, his natural approach to managing MS for thirteen years before HSCT, and how he fared during his time in Puebla at Clinica Ruiz. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Best Bet Diet and MS Hope

HSCT Warriors
Reconnect with Mike and celebrate one year of freedom post-HSCT Warriors (Ep. 98)

HSCT Warriors

Play Episode Listen Later Feb 15, 2023 70:45


Warrior: Mike AI: Multiple Sclerosis HSCT: January 17, 2022 Superpower: acceptance and grace Where does kindness hit you? To what extent do you seek grace? How well do you find acceptance? We first met Mike in Season 7, shortly after he found out about HSCT. After battling with insurance and seeking HSCT at different clinics in the United States, Mike considered a variety of factors in his decision to pursue treatment in Monterrey, Mexico. As Mike works to support physical improvements despite spasticity post-transplant and a battle with COVID, he is finding room for his superpowers of acceptance and grace. Tune in to learn more about the ‘hiccups' that Mike encountered and their resolution, as well as considerations for family and recovery. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Connect with Ali and celebrate launching season 10 of the podcast (Ep. 95)

HSCT Warriors

Play Episode Listen Later Feb 1, 2023 62:02


Warrior: Ali Strong AI: Multiple Sclerosis HSCT: November, 2017 Superpower: Acceptance What do you do for yourself that brings you joy? Are you someone who accepts moderation? To what extent do you find balance in life? Check in with Ali Strong to recount her experience finding her way to and through HSCT and learn how she is feeling now at more than five years post-transplant, including her struggles with menopause, disordered eating, and mental health. Join Ali and Zen Jen in discussion about Dr. Burt's latest book and what's to come with the podcast. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Learn more about Dr. Burt's journey with HSCT and his latest book, Everyday Miracles (Ep. 96)

HSCT Warriors

Play Episode Listen Later Feb 1, 2023 40:14


Warrior: Dr. Richard K. Burt AI: Halter HSCT: Pioneer Superpowers: tenacity, resilience, curiosity, compassion, holistic approach With gratitude for time to connect with Dr. Richard K. Burt and celebrate the recent publication of his latest book, Everyday Miracles: Curing multiple sclerosis, scleroderma, and autoimmune diseases by hematopoietic stem cell transplant, we're sharing the following verbatim transcript of this conversation, the first of two featuring Dr. Burt. Tune in next Wednesday to hear more in a second conversation with Dr. Burt. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Reconnect with Graciela along her journey to HSCT in her hometown of Monterrey (S7 replay)

HSCT Warriors

Play Episode Listen Later Jan 25, 2023 48:37


Warrior: Graciela AI: Multiple Sclerosis HSCT: January 2021 Superpower: value for life After initially being told her symptoms were all in her head, Graciela received an apology from her neurologist along with her diagnosis. She was presented with options for treatment including disease modifying therapies and the extreme option of HSCT. When she further explored HSCT as an option, she learned that Clinica Ruiz offered the treatment in her hometown of Monterrey and she immediately connected with family to learn more. Tune in to learn how Graciela kept a positive attitude and mindset to help her take on anger, fear of the unknown, thyroid issues, and covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Reconnect with Heidi to learn how she took back control to pursue HSCT Warriors (S7 replay)

HSCT Warriors

Play Episode Listen Later Jan 18, 2023 54:15


Warrior: Heidi Peterson AI: Relapsing Remitting MS HSCT: July, 2019 Superpower: strength Do you take the time to celebrate in life? How often do you recognize the little victories? Although Heidi was diagnosed relatively soon after her first experiences with early symptoms of multiple sclerosis, the doctor she saw focused more on prescribing medications to treat symptoms she was experiencing and it seemed her MS diagnosis was set aside. After seeking other care that led to identifying additional health issues, she soon realized the tally of prescriptions totaled thirty different medications, including some that should not be taken together. Tune in to learn more about how Heidi regained control of her health care and pursued HSCT in Monterrey, spent six months taking cautions to work through neutropenia, only to return to quarantine due to covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Continue learning the power of mindset along Zarko's journey with HSCT in Moscow (S7 replay, part 2)

HSCT Warriors

Play Episode Listen Later Jan 11, 2023 68:21


Warrior: Zarko Bilal AI: Relapsing Remitting MS HSCT: April, 2021 Superpower: positive thinking When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact? The continuation of this two-part episode reveals even more detail about Zarko's experience with HSCT at the AA Maximov Hospital in Moscow, including how he managed the stress of delays due to covid, how he kept himself busy during isolation, the mindset he embraced, and insights gained during his journey. We are grateful to spend two episodes with Zarko learning about how he trained his mindset in preparation for HSCT and gained new perspectives to carry forward in life post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Revisit Zarko's journey to HSCT and find joy with what is (S7 replay, part 1)

HSCT Warriors

Play Episode Listen Later Jan 4, 2023 51:05


Warrior: Zarko Bilal AI: Relapsing Remitting MS HSCT: April, 2021 Superpower: positive thinking When did you start to figure out the important things in life? How do you overcome fear of the unknown? How do you keep your mentality in tact? After a happenstance diagnosis of MS, Zarko initially held on to the hope that his symptoms would be a one-time hit of CIS. Easy to rationalize because of all the stress he experienced, he recovered fairly quickly and set out on his career path as a new attorney. After a year, the disease caught up with him, and unfortunately he noticed new symptoms that helped confirm his diagnosis. As he consulted with research about the disease and various treatment options, he found HSCT and asked two different neurologists for their opinions. Tune in to the first of this two-part episode to learn more about Zarko's plans to pursue HSCT and how they were delayed by covid. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Reconnect with HSCT hopeful Yavor to learn from his consistency and positive mindset (S7 replay)

HSCT Warriors

Play Episode Listen Later Dec 28, 2022 64:37


Warrior: Yavor Milanov AI: Relapsing Remitting MS HSCT: Scheduled in March 2022 Superpowers: Consistency How well do you attune with culture? Is your mindset one of growth, or is it fixed? How do you navigate your internal compass? After his diagnosis, Yavor felt tired and run-down facing his experience as a new immigrant working three or four jobs at a time. He experienced terrible side effects after steroids and trying an initial disease modifying therapy, so returned home to Bulgaria for a long respite. Rest, reduced stress, and time with family and friends helped reduce his symptoms and after six months, he returned to Canada and began noticing his disease becoming more active. Refusing to accept an incurable disease as his destiny, Yavor made radical changes to his diet and lifestyle to become as healthy as possible. Tune in to learn more about Yavor's experience with the Wahl diet, mesenchymal stem cells in Panama, how he leaned on the discipline of swimming to keep his motivation and disposition positive, and his ability to anticipate (rather than react) to what is on the horizon, including his plans to pursue HSCT in Russia. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Reconnect with Samantha along her journey from Melbourne to Moscow for HSCT(S7 replay)

HSCT Warriors

Play Episode Listen Later Dec 21, 2022 63:00


Warrior: Samantha Lakey AI: Primary Progressive Multiple Sclerosis HSCT: July 5, 2021 Superpower: eating Are you someone who believes in fate? How do you recognize joy in yourself? Only after Samantha endured a full-body seizure and spent weeks in the hospital did she finally receive a diagnosis for symptoms that doctors continued to brush aside, even though she had been struggling with fatigue, insomnia, numbness, nerve pain, and loss of balance, loss of vision and taste, tremors, and more for nearly two years. With the proper diagnosis, Samantha and her family were soon connected with individuals and resources that pointed her in the direction of HSCT, including a personal connection with someone who had been through HSCT seven years prior. Tune in to learn more about navigating the possibilities of HSCT from Australia, Samantha's experience with traveling to Russia for HSCT, and how she is faring just three months post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Revisit Mike's journey to HSCT and be inspired by his humble fortitude (S7 replay)

HSCT Warriors

Play Episode Listen Later Dec 14, 2022 67:54


Warrior: Mike AI: Multiple Sclerosis HSCT scheduled for January 2022 Superpower: fortitude How do you share your diagnosis with others? How familiar are your loved ones with the demons you battle? How do you reconcile your experience with disease? Having received a diagnosis at the young age of 22 after a bout of optic neuritis, Mike experienced reversal of his symptoms after a round of steroids and figured the disease would be manageable. Fast forward ten years and suddenly Mike realized the disease had actually been simmering just beneath the surface and after a severe hurricane, began more noticeably interrupting his daily functioning. After trying a couple of different disease modifying therapies, Mike was introduced to the idea of HSCT in social media advertisements for the Selma Blair documentary, and began exploring it as an option just two months ago. Tune in to learn more about the various ways that Mike has felt supported along his journey despite the questions and concerns that any HSCT Hopeful has also considered. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician

HSCT Warriors
Revisit insights from Jacob's strategies to navigate the journey to HSCT (S7 replay)

HSCT Warriors

Play Episode Listen Later Nov 30, 2022 59:32


Warrior: Jacob Kinch AI Multiple Sclerosis HSCT: October, 2020 Superpower: new perspective Where do you find glimmers of hope? Do you recognize the double-edged sword of multiple sclerosis? Jacob shares so many relatable aspects of his experience with multiple sclerosis, including frustration with doctors, questionable approaches and decisions around treatment, and challenges with paying for expensive medications. Despite his best efforts with disease modifying therapies, the side effects that Jacob experienced made it dark and difficult to live with MS. Once he found HSCT and began researching, he found a glimmer of hope that was strengthened after he connected with someone at Clinica Ruiz to address his pages of questions. Tune in and learn more about Jacob's experience at Clinica Ruiz, navigating travel and processing other peoples' judgments and skepticism, including doctors' and neurologists' opinions. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Reconnect with Cassidy along her journey of over-achieving before and after HSCT* (S6 replay)

HSCT Warriors

Play Episode Listen Later Nov 23, 2022 77:54


*This episode contains content that may be alarming to some listeners, including mentions of suicidal ideation. Please check the show notes for more detailed descriptions and take care of yourself* Warrior: Cassidy V. Chapman AI: Multiple Sclerosis HSCT: July15, 2019 Superpower: Passion for bringing awareness to HSCT To what extent are you an over-achiever? How open are you to receiving support from others? Where do you find family? After being diagnosed with MS her first year of law school, Cassidy was initially able to manage her disease with a variety of disease-modifying therapies. Though building a successful career as an attorney came with compounding stress that caused significant relapses which left Cassidy fighting optic neuritis and blindness, it was the fatigue and cognitive impairments that ultimately led her doctor to recommend she stop working. After waiting 33 months to be approved for social security disability, Cassidy found creative ways to stay afloat while managing her relapses and steroid psychosis. Thanks to the guidance of an eleven-year HSCT veteran, once Cassidy decided it was time to pursue HSCT, she surrounded herself with caregivers. With frank conversation about Cassidy's experience seeking disability about the side effects of multiple sclerosis and its' medical treatments, including steroid psychosis that led to homicidal and suicidal ideation (skip 40:00-42:30 and 1:02:00-1:05:05 if you want to avoid these parts of the conversation), this episode offers helpful insights about MS symptoms to look out for both pre- and post-HSCT. Tune in to learn more about Cassidy's scare at 14 months post-HSCT and how her experience with HSCT has shifted her perspective and her priorities. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Revisit Rachel's journey with CIDP before myeloablative HSCT at the CBCI in Denver (S6 replay)

HSCT Warriors

Play Episode Listen Later Nov 16, 2022 54:58


Warrior: Rachel Gallery AI: Chronic Demyelinating Polyneuropathy Disease HSCT: Oct 19, 2020 Superpower: Empathy Do you consider yourself a lucky person? How often do you receive treatment for autoimmune disease? How layered is your circle of support? After spending nearly a year with strange symptom progression, a neurologist was finally able to diagnose Rachel when IVIG helped to offset some of her most problematic symptoms. After five years of managing her disease with IVIG infusions every two weeks, she found herself facing rapid decline, trying a variety of aggressive treatments including cytoxan and rituxan that failed to help. Tune in to learn more about the clinical trial at the Colorado Blood Cancer Institute (CBCI) in Denver, and the confidence to get through the myeloablative protocol and significant complications (namely graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support, illuminate invisibilities, and adjust to life with chronic illness, this conversation with Rachel offers practical strategies to make it through some really tough moments along the HSCT path. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Colorado Blood Cancer Institute HSCT Warrior Podcast

HSCT Warriors
Reconnect with Erin to find empathy and connection despite feelings of isolation (S6 replay)

HSCT Warriors

Play Episode Listen Later Nov 9, 2022 63:52


Warrior: Erin Schoenlein AI: Multiple Sclerosis HSCT: March 15, 2020 Superpower: energy to help other people How wide is your view? Do you know what it feels like to be well? For how long have you been distanced? Having been diagnosed with an autoimmune disease in high school, Erin is no stranger to advocacy for well-being and the importance of spinning challenges into positive opportunities. Although she did not qualify for the clinical trials in the United States, Erin researched her options and found herself at Clinica Ruiz just prior to the start of the global pandemic. Erin distracted herself from the chaotic stress of COVID by surrounding herself in a bubble of staying focused on positivity and gratitude expressed by others around her. During this conversation with Erin, hear more about how her experiences in Mexico and her quarantine upon returning home helped motivate her to find inclusive ways to empower others. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Sail MS Paavitforward.org HSCTWarriors.org

HSCT Warriors
Continue learning from DeWayne's experience with myeloablative HSCT (S6 replay part 2)

HSCT Warriors

Play Episode Listen Later Nov 2, 2022 50:22


Warrior: DeWayne Durr AI: Multiple Sclerosis HSCT: Oct 29, 2020 Superpower: Confidence How supported do you feel? To what extent do you think about each step that lies ahead? Continuing from where we left off in this two part episode, tune in to learn from DeWayne as he shares more about his experience navigating his return to work, changes with his diet, and considerations for health and wellness while in the early stages of recovery from the myeloablative protocol at Cleveland Clinic. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: www.rooftopprayerwarrior.com www.hsctwarriors.org

HSCT Warriors
Revisit DeWayne's experience as the first patient for MS at the Cleveland Clinic (S6 replay part 1)

HSCT Warriors

Play Episode Listen Later Oct 26, 2022 47:42


Warrior: DeWayne Durr AI: Multiple Sclerosis HSCT: Oct 29, 2020 Superpower: Confidence Are you one to Check-in with DeWayne to hear more about his experience as the first patient to receive HSCT for Multiple Sclerosis at the Cleveland Clinic. With so many details about his experiences with the myeloablative protocol of the BEAT-MS study, including securing insurance coverage, the staff and his in-patient experiences, as well as logistics and details about the time spent after discharge in a nearby hotel, DeWayne shares so many valuable insights, this interview airs as a two-part episode. Tune in this week to hear the details about being in-patient at Cleveland Clinic and logistics for after-care in Cleveland, and next week, join us to hear more about DeWayne's experience with recovery so far. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: www.rooftopprayerwarrior.com www.beat-ms.org

HSCT Warriors
Revisit the continuation of Joceline's journey and a COVID work-around (S6 replay part 2)

HSCT Warriors

Play Episode Listen Later Oct 19, 2022 53:27


Warrior: Joceline AI: Multiple Sclerosis HSCT: soon in 2021? Superpowers: doing nothing How comfortable are you with uncertainty? Are you able to leave the unknown alone? How do you find patience when you find yourself on the brink? Picking up where we left off in this two part episode, tune in to learn more about how Joceline reacted to the idea of incorporating a wheelchair as an assistive device, how she continues to manage her multiple sclerosis as she awaits HSCT, and the practices she has learned through various resources and connections. As a nurse's assistant by training, Joceline continues detailing her journey beyond diagnosis, attempts at treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience with lockdown in the UK while awaiting the Russian border to open. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: HSCT Moscow MS Tripping on Air Instagram HSCT Warriors Podcast HSCT Warriors, Inc.

HSCT Warriors
Revisit Joceline's honest reflections and find compassion for others (S6 replay part 1)

HSCT Warriors

Play Episode Listen Later Oct 12, 2022 54:43


Warrior: Joceline AI: Multiple Sclerosis HSCT: sometime in 2021? Superpowers: doing nothing How do you establish trust in the systems? How many doctors have you fired? How do you find patience when you find yourself on the brink? After initially being brushed off by doctors, once diagnosed with multiple sclerosis, Joceline found she wasn't interested in pursuing medication for what she felt doctors knew very little about at the time. As she chose to pursue a natural course of treatment with Chi Gong, diet, and acupuncture, Joceline offers powerful reflections with the wisdom of hindsight in finding compassion for her younger self, who just wanted to feel ‘normal' despite her diagnosis. Tune in this week to learn how after eight years of managing the diagnosis with alternative narratives and symptom etiologies, Joceline finally experienced her diagnosis-moment after finding a neurologist who appeared genuinely concerned for her well-being. Sharing details about the ups and downs of relapses, rejecting medications, and navigating modifications to walking, working, and support by the NHS medical professionals, this two-part episode offers a wealth of information and insights along the road to HSCT. As a nurse's assistant by training, Joceline shares one of the most detailed interviews about her journey through diagnosis, treatment, and pursuit of HSCT, including sharing her strategies for fundraising and finding patience as she awaits the border to reopen. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Bates Natural Vision Improvement Exercises Radical Acceptance by Tara Brach Ahna Crum

HSCT Warriors
Catch-up with Amy and celebrate her learning journey at nearly one-year post HSCT (Ep. 94)

HSCT Warriors

Play Episode Listen Later Oct 5, 2022 68:48


Warrior: Amy Capel AI: Multiple Sclerosis HSCT: October 2021 Superpower: mentality To what extent are you distracted? Have you ever been on the outside looking in? We first met Amy in Season 7 when she described her struggle to understand the disease and the storm of negative side effects from the first medication she tried. Thanks to a friend who had success with HSCT, Amy was convinced and committed to making the best decisions for herself and her family which meant advocating for herself to pursue HSCT. We last spoke with Amy the day before she met with a new neurologist at Duke University, just days before she was scheduled to travel to Clinica Ruiz in Puebla. Tune in to hear more details about Amy's experience with the clinic, the culture, the physical and the mental components of her journey to HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Check-in with DeWayne after two-years from being the first patient on the BEAT-MS trial (Ep. 93)

HSCT Warriors

Play Episode Listen Later Sep 28, 2022 70:55


Warrior: DeWayne Durr AI: Multiple Sclerosis HSCT: October 20, 2020 Superpowers: gratitude Do you enjoy finding the why? How often do you extend gratitude? As the first person to receive HSCT as a part of the BEAT-MS trial at the Cleveland Clinic, DeWayne has graciously offered great insights throughout his journey, including this update at nearly two-years post-transplant. From the strategies he has pursued to promote healing, to observations about interactions with others, this episode offers an abundance of resources that have helped along DeWayne's journey. Tune in and be inspired by DeWayne's superpower of gratitude and his openness in sharing his story as the first person treated at the Cleveland Clinic on the BEAT-MS trial at the Cleveland Clinic. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: LED light therapy and Cryotherapy at the Chill Zone www.rooftopprayerwarrior.com www.hsctwarriors.org

HSCT Warriors
Reconnect with Allison to celebrate superpowers at eight-years post-HSCT (Ep. 92)

HSCT Warriors

Play Episode Listen Later Sep 21, 2022 60:35


Warrior: Allison Carr AI: Multiple Sclerosis HSCT: December, 2014 Superpowers: hope and grit Are you motivated to give back to others? To what extent do you recognize superpowers in others? How challenging is it for you to be optimistic? As someone who spent nearly twenty years battling the unknown, Allison was surprised to be approached by a stranger curious about her drop foot, and even more surprised when she was finally diagnosed with multiple sclerosis. After battling with insurance to pursue HSCT outside a clinical trial in hopes to avoid the transition to secondary-progressive, and dedicating time to healing her physical body post-transplant, Allison continues to find gratitude and spread hope to others along her journey. Reconnect with Allison (who we first met in Season 3) to learn from her personal, physical and spiritual reflections, and how she is faring at nearly eight-years post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Medical Medium: Cleanse to Heal by Anthony William

HSCT Warriors
Meet Alisha, hopeful for HSCT someday, even if it isn't an option where she lives (Ep. 91)

HSCT Warriors

Play Episode Listen Later Sep 14, 2022 57:51


Warrior: Alisha Daly AI: Multiple Sclerosis HSCT: hopeful Superpower: Resilience and compassion How fair is the playing field in your experience with autoimmune disease? How far have you been strung along before receiving a diagnosis? Despite a severe bout of optic neuritis, it took more than four visits to the emergency room and multiple specialists weighing in before an MRI was ordered to help assess why Alisha was experiencing severe headaches and loss of vision. Although the first interpretation of the MRI was deemed to be a clinically isolated incident and she received steroids which helped alleviate the optic neuritis, within just a few days, Alisha was hit with another attack of pain, floating spots and loss of vision. Tune in and be inspired by Alisha's story of tenacity as she navigates her diagnosis and finding her way to HSCT... someday. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Fundraiser: https://gofund.me/2f1385d6 Instagram: Dirtygyul_

HSCT Warriors
Meet Rebecca at four years post-transplant and learn from her gracious outlook (Ep. 90)

HSCT Warriors

Play Episode Listen Later Sep 7, 2022 70:34


Warrior: Rebecca Katonica AI: Multiple Sclerosis HSCT: November 2018 Superpower: Grace Do you try to explain away that which might be serious? When was the last time you took a leap of faith? After an explosive headache behind her eyes, Rebecca found herself at the eye doctor who ordered an MRI that evidenced lesions and diagnosed her with multiple sclerosis. Insistent that she could still participate in a social event while wearing an eye patch, she began steroids that helped reset her double vision and vertigo. At this time, there was only one disease-modifying therapy to try, which gave her flu-like symptoms. Over her twenty-year experience with MS before HSCT, Rebecca tried all but one medication and ended up losing countless bodily functions until the point she was basically bedridden. Tune in to learn more about how Rebecca, despite having trouble sitting up in the car, successfully navigated the journey to Clinica Ruiz to undergo HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Be inspired by Cecilia's resilience at four years post-transplant (Ep. 89)

HSCT Warriors

Play Episode Listen Later Aug 31, 2022 54:20


Warrior: Cecilia Reyes AI: Multiple Sclerosis HSCT: July, 2018 Superpower: Resilience To what extent has your view softened? To what extent are you learning as you move through life? Do you find blessings and opportunities in the challenges you face? Check-in with Cecilia at four years post-transplant and learn from the many insights shared and be inspired to find a compassionate journey with yourself. From mindset and positive self-talk to diet and exercise, this conversation shines a light on the importance of patience, trusting the process, finding connection with yourself and community, and practicing resilience. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Find motivation from the success of Steve's journey to HSCT in Russia (Ep. 88)

HSCT Warriors

Play Episode Listen Later Aug 24, 2022 67:24


Warrior: Steve Apperson AI: Multiple Sclerosis HSCT: April 9, 2015 Superpower: compassion Is there anything you can't do? How often do you find time for reflection? How often do you have space to go within? After initial symptoms that occurred years apart, when Steve found himself unable to run without foot drop after the same three miles, he consulted with his doctor and after a week, received the diagnosis of multiple sclerosis over the phone. He moved to action raising money and became a top fundraiser for the National MS Society as he found himself researching the possibility of HSCT because he felt worse taking the disease modifying therapies. Eventually deciding to pursue transplant in Moscow, Steve found a majority of his symptoms resolved post-transplant and shifted his focus of advocacy to supporting others and helping more people understand the possibility of HSCT. Tune in to hear how Steve is doing now, seven years-post transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Steve Apperson on youtube

HSCT Warriors
Learn from Elyse about the possibilities of HSCT to halt both Lupus and Sjogren's (Ep. 87)

HSCT Warriors

Play Episode Listen Later Aug 17, 2022 67:34


Warrior: Elyse Meyer AI: Lupus and Sjogren's HSCT: July 2020 Superpower: not afraid to try new things Are you aware of being comfortable? How do you define success? How do you define quality of life? Despite maxing out every possible treatment option, including biologics and steroids, Elyse's immune system was attacked by two different autoimmune conditions. Diagnosed when bloodwork before a medical procedure indicated that her white blood cell count was low, Elyse was stressed throughout testing to rule out other conditions including cancer and HIV. Once the doctors diagnosed both Lupus and Sjogren's, she began a rigorous regimen of medications in an attempt to interrupt the sometimes two-year long flares of rashes, eye and mouth dryness, salivary gland pain, and more. Tune in to hear how HSCT has helped the multiple symptoms that Elyse experienced while battling two autoimmune diseases, whether she faces any side effects from HSCT, and how she is faring now at two years-post transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Celebrate life in 3D with Kristen, nearly eight years post-transplant (Ep. 86)

HSCT Warriors

Play Episode Listen Later Aug 10, 2022 59:08


Warrior: Kristen Kroen AI: Multiple Sclerosis HSCT: January 2015 Superpower: confidence To what extent does stress impact you? How full do you feel life is? How well are you able to put fear aside? As an avid runner, Kristen managed several years of mystery symptoms before receiving the diagnosis of multiple sclerosis in 2009. Despite her aggressive approach with attempting to slow the progression, including solumedrol, rituximab, copaxone, and several other disease modifying therapies, it seemed the drugs had no effect. Kristen found herself slowing each year from running marathons to speed-walking to limping with a cane to a scooter and eventually a wheelchair, unable to hold a fork by 2013. Once she was connected with someone who had received HSCT in Germany, she was convinced. She applied in Italy and Russia and was accepted while she pursued the clinical trial at Northwestern, yet was rejected. Tune in to hear more about how a gracious pilot on a canceled flight helped her arrive at a second appointment with Dr. Burt to be treated on a compassionate care basis, her experience with divine interventions, trust in Dr. Burt through transplant, and how she is faring seven-and-a-half years later with her new lease on life. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Glen Howard meditation and prayer books

HSCT Warriors
Check-in with Ali at nearly five years post-HSCT as we launch our ninth season (Ep. 85)

HSCT Warriors

Play Episode Listen Later Aug 3, 2022 56:10


Warrior: Ali Roberts AI: Multiple Sclerosis HSCT: November 6, 2017 Superpower: Motivation Are you someone who feels your emotions? Do you focus on what can (v. can't) be done? Can you find the present in each moment? The beginning of a new season offers the opportunity to check in with Ali and how she is faring, nearly five post-HSCT. Tune in to learn how Ali is managing menopause, strategies for wellness, navigating shifts in diet, exercise, hormones, emotions, and anxiety. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Dr. Burt's non-myeloablative HSCT protocol (not yet recruiting) will be posted at clinicaltrials.gov - contact him in the meantime by emailing burtrrmstrial@scrippshealth.org Embodiment, fascial awakening, and emotional regulation support offered by Jess Rachel - contact her to learn more by emailing jess4embodiment@gmail.com

HSCT Warriors
Revisit Vic's inspiring resolve and determination despite the naysayers and COVID (S6 replay)

HSCT Warriors

Play Episode Listen Later Jul 27, 2022 61:05


Warrior: Vic Bonilla AI: Multiple Sclerosis HSCT: Oct 2020 Superpower: unbreakable resolve Have you ever felt like an observer of your life? Have you stared down the barrel of mortality? Is the patience you have with others, the same, greater, or less than the patience you have with yourself? Within a few months of being diagnosed with multiple sclerosis, Vic was connected with someone who was transplanted in Russia ten years ago and immediately began researching HSCT. Once he made his way to Clinica Ruiz for his treatment, he and his brother tested positive for COVID and opted to quarantine in Mexico before returning to Clinica Ruiz for HSCT. By this time, Vic's brother needed to return to the US, and thankfully Vic was able to hire a caregiver. Tune in to learn more about Vic's experience with his caregiver in Puebla, his journey with the MS symptoms that caught him by surprise, his extensive research into HSCT, how things are faring nearly six-months post-HSCT, and the unexpected outcomes he continues to enjoy. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Revisit Chloe's inspiration to increase awareness, and stay sane, despite COVID (S6 replay)

HSCT Warriors

Play Episode Listen Later Jul 20, 2022 70:07


Warrior: Chloe Zallen AI: Relapsing remitting multiple sclerosis HSCT: Oct/Nov 2020 Superpowers: self-love Are you able to recognize your limitations? Are you aware of your stressors? As a traveling cardiac specialist with experience at several hospitals, Chloe found herself in an extremely stressful environment with a lot of fear incited by the uncertainties of her MS. When she suddenly had numbness along the entire right side of her body, she began googling her symptoms and weighing the possibilities while awaiting the results of an MRI. Though she received a diagnosis soon thereafter, nearly every neurologist she consulted encouraged the same disease-modifying therapy and after researching the side effects, Chloe opted instead to adopt special diets and a natural path to managing her symptoms. Tune in and learn more about how Chloe found complete relief from her symptoms while away in New Zealand, find motivation to be your own advocate, and how she found her way to HSCT despite doctors' and friends' concerns that she would die. Hear more about her experience in Monterrey and how she was able to stay active and sane despite the global pandemic. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Revisit Christy's journey to Monterrey and learn more about the power of connections (S6 replay)

HSCT Warriors

Play Episode Listen Later Jul 13, 2022 61:49


Warrior: Christy Miller Kuziensky AI: MS HSCT: February 2021 in Monterrey Superpowers: patience and trust in Clinica Ruiz Have you been fortunate enough to find confidence in your big decisions? How has patience served you along your journey? Are you comfortable showing up with no expectations? With arm numbness that led to her diagnosis at the age of 24, Christy experienced some time without many MS symptoms and was doing her best to be adventurous and live a full life. Until she found herself in the outback of Australia for an outdoor teaching experience, hit with a terrible flare and optic neuritis that forced her on a return flight to the US within 24 hours. As an avid believer in the body's capacity to heal itself, Christy spent two decades pursuing natural therapies to treat her MS symptoms, including acupuncture, Chi Gong, tapeworms, and bee sting therapy. Tune in to learn more about how Christy found HSCT and faced her doubts to fundraise her way to Clinica Ruiz in Monterrey. With great tips for narrating her 26 year journey with MS avoiding disease modifying therapies and generating support for her treatment, Christy's journey helps to reinforce the power of networking and sharing connection with others. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org

HSCT Warriors
Reconnect with Ovi on her way to Puebla and learn what it means to be strong-strong (S6 replay)

HSCT Warriors

Play Episode Listen Later Jul 6, 2022 49:48


Warrior: Ovi James AI: MS HSCT: February 2021 Superpower: mindset How well do you navigate self-advocacy? After years of terrible headaches and issues with standing and walking, Ovi ended up losing her job and her home which caused significant relapses that rendered her disabled. As a single mother, Ovi's goal was to focus on the positive and help her son “see the light at the end of the tunnel” even though she struggled to understand everything that was going on as her family chose not to support her. With the support of various shelters and physical, occupational, and mental health therapies, Ovi was able to focus on healing and learning how to better advocate for herself. She eventually found a rheumatologist who was able to see she was struggling with more than fibromyalgia and scheduled the MRI that led to her multiple sclerosis diagnosis. Although this interview occurred the weekend that Ovi was preparing to head to Clinica Ruiz in Mexico, it is airing while she is currently undergoing treatment and could use continued support from our HSCT community. Tune in and learn more about Ovi's journey and how she found strength in being properly diagnosed, and keep such a positive outlook on life and how she turned inward to focus on her gifts in order to actualize the possibilities of pursuing HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Social media YouTube: @ovijames and Instagram: @itsovijames Clinica Ruiz: https://hsctmexico.com HSCT Warriors: https://HSCTWarriors.org

HSCT Warriors
Reconnect with Lynn and gain insights on the nuances of CIDP (S5 replay)

HSCT Warriors

Play Episode Listen Later Jun 29, 2022 105:22


Warrior: Lynn Rogers AI: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) HSCT Hopeful: Superpower: widened lens Have you ever worried about asking people for help when their investment isn't a sure thing? How do you define barriers to treatment for your autoimmune disease? As a triathlete, crossfit-er, and marathoner preparing for an Ironman race, imagine the frustration when Lynn found herself paralyzed after two weeks of testing that led to no answers. Having a career in biomedical engineering with a focus on helping individuals with motor-recovery, Lynn was very surprised to find herself struggling with the same acute neurological issues as her patients. Tune in to learn more about her journey with symptoms that were not “textbook” and how the diagnostic testing not designed to pick up subtleties rendered her borderline, ultimately prolonging a diagnosis. Learn more about Lynn's efforts to find answers and collaborate with her doctors over the course of three years to develop a plan of action that is leading her to pursue HSCT. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Clinica Ruiz https://hsctmexico.com

HSCT Warriors
Revisit Sagirah's commitments in defining success with HSCT (S5 replay)

HSCT Warriors

Play Episode Listen Later Jun 22, 2022 60:48


Warrior: Sagira Ahmed Norris AI: Multiple Sclerosis HSCT: January 2020 Superpower: flexibility Are you someone who prefers to schedule a plan for every detail in life? Do you After first being diagnosed, Sagira found herself more driven than ever to complete life goals ahead of schedule while she was able, including travel to foreign countries to run marathons. Once her symptoms began matching what her doctor projected for her years down the road, she happened upon HSCT by chance while in Europe. After returning home, Sagira did more research and then talked with her doctor, only to be told that HSCT wasn't an option for her, particularly the kind of HSCT that involved leaving the country. Tune in to learn more about how Sagira defined her path to HSCT, the flexibility she gained throughout her experience, and whether she qualified for the Boston Marathon even before her one-year HSCT birthday. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: HSCT Warriors, Inc.

HSCT Warriors
Revisit our chat with Brooke Slick about managing setbacks post-HSCT (S5 replay)

HSCT Warriors

Play Episode Listen Later Jun 15, 2022 61:05


Warrior: Brooke Slick AI: Multiple Sclerosis HSCT: 2013 Superpower: surrender Are you able to surrender to all that seems out of your control? How easy is it for you to allow things to just happen? Revisit Brooke's journey to HSCT and learn more about the setbacks she has faced post-HSCT, (including surgeries for trigeminal neuralgia) but also the influence of mindset, and the inspirations she has found with persevering in her battle with MS beyond HSCT. Tune in to check-in with our dear friend, Brooke and hear more about how she continues to support others along their journey to HSCT and celebrate the gifts of community and service to others. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: The MS Gym Podcast The MS Gym HSCT Moscow HSCT Warriors, Inc.

HSCT Warriors
Reconnect with Felicia and how she fought against the odds and COVID to pursue HSCT (S5 replay)

HSCT Warriors

Play Episode Listen Later Jun 8, 2022 82:03


Warrior: Felicia Merritt AI: Progressive Multiple Sclerosis HSCT: August 2020 Superpower: Feeling invincible Have you ever suddenly realized just how much you were taking for granted? Have you been able to find internal strength? What about internal peace? Shortly after turning 30, Felicia began experiencing vision issues and weakness. Following an intense crossfit workout, Felicia hoped she could laugh things off until she checked herself into the hospital. Her doctors referred her to Ohio State University and once surrounded by a medical team for a few days, Felicia was diagnosed with multiple sclerosis in 2018. Tune in to learn more about HSCT despite COVID and details about the level of detail, treatment and care Felicia received at Clinica Ruiz, and all that she has gained in just the first couple of weeks post-HSCT. Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Revisit our catch-up with Marlo, who persevered despite a super twisted path to HSCT (S5 replay)

HSCT Warriors

Play Episode Listen Later Jun 1, 2022 64:39


Warrior: Marlo Kalb AI: Relapsing Remitting Multiple Sclerosis HSCT: confidence to fight back Superpower: 9.30.19 How will you face the many curves that lie ahead? Diagnosed at just 13 years old, Marlo found herself eager for HSCT after doing research and listening to this podcast. First interviewed as a HSCT Hopeful during Season 2, Marlo shared her journey to become the first person transplanted in Boston. After facing administrative issues, delays, and opinions not favorable to her candidacy, tune in to learn more about how Marlo faced the multiple twists and turns that eventually led her to Clinica Ruiz. Join us in celebrating Marlo's one-year stem-cell birthday and how HSCT has impacted her after spending 13 years living with MS. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Meet Mendo and the positive mindset he embraces, thanks to HSCT (Ep. 84)

HSCT Warriors

Play Episode Listen Later May 25, 2022 52:58


Warrior: Mendo Micevski AI: Primary Progressive Multiple Sclerosis HSCT: June 2021 Superpower: Mindset Are you someone who prefers to live in the shadows? How well do you notice the ‘chalk and cheese'? After years of noticing odd symptoms that doctors could not figure out, Mendo was walking to dinner one Saturday evening when his vision became blurry and doubled in his left eye. The following day he visited a specialist's hospital in Melbourne where the doctor noticed inflammation of his optic nerve, suggested it could be multiple sclerosis, and encouraged him to get an MRI. After receiving the diagnosis in 2005, Mendo was in a bit of shock as he was unfamiliar with the disease, aside from commercials about the medications that depicted people in a wheelchair. Tune in to learn more about the slow decline that Mendo experienced, how he learned that HSCT might be an option for him (though not in Australia), his journey to Russia, his experience during HSCT and returning to quarantine in Australia, and how he is faring and all the differences he is noticing at 10 months post-transplant. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician.

HSCT Warriors
Meet Stacy and learn from reflections as she celebrates her third stem cell birthday (Ep. 83)

HSCT Warriors

Play Episode Listen Later May 18, 2022 64:01


Warrior: Stacy McNall AI: Primary Progressive Multiple Sclerosis HSCT: May 14, 2019 Superpower: being still Are you someone that trusts the process? How do you handle the need to slow down? Are you able to find calm in the storm? As a very active person who “lived in overdrive” as a nurse practitioner and marathoner, Stacy tended to set aside the symptoms she experienced for nearly 18 years before she was diagnosed. During her 14th marathon, Stacy tried her best to get moving but her legs would not cooperate and she finally went to see a doctor. After trying several disease modifying therapies that did not seem to help, Stacy looked further into HSCT while she was hospitalized with a relapse and was successful enrolling in the clinical trial at Northwestern just before it ended. From relapses, to support from reiki masters, to issues with insurance, to reactions during the stem cell transplant including a blood clot, psychosis, and extreme nausea, Stacy seems to have experienced everything along the HSCT rollercoaster. Be sure to visit our website, HSCTWarriorsPodcast.org where you can find notes from today's episode, submit ideas or feedback, or connect with HSCT Warriors, Inc. and schedule time to “Talk with a Warrior”, find the latest research and resources, or explore the world map. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to produce the soundtrack, and engineer the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find podcasts. It has been great to connect with Warriors worldwide, so please reach out if you're interested in sharing your story. We would love to learn how the podcast has helped your journey with autoimmune disease so if you could take a moment, leave us a comment on instagram or share feedback on our website. We hope you'll tune in next Wednesday for another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers. Be kind. Be well. _________________________________ Jen Stansbury Koenig and the producers disclaim medical influence and responsibility for any possible adverse effects from the use of information contained herein. If you think you have a medical problem, please contact a licensed physician. Resources: Reiki Myofascial release Vibration plate