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

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.

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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
LED light therapy and Cryotherapy at the Chill Zone
www.hsctwarriors.org

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

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.

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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

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

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_

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

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.

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

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

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

Warrior: Ovi James
AI: Multiple Sclerosis
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.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:
Social media YouTube: @ovijames and Instagram: @itsovijames
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

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

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.

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

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.

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

Warrior: Stacy McNall
AI: Primary Progressive Multiple Sclerosis
HSCT: May 14, 2019
Superpower: being still

Are you someone who trusts the process? How do you handle the need to slow down? Are you able to find calm among 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 a 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

Continue learning from Carolyn’s insider perspective with HSCT at Cleveland Clinic (Ep. 82 part 2)

Warrior: Carolyn Deming
AI: Multiple Sclerosis
HSCT: scheduled May 11
Superpower: blatant honesty

Do you ponder problems or possibilities? What is your approach to finding the right mindset? How do you advocate for what you know you need?

Picking up where we left off last week, tune in to hear details about Cleveland Clinic’s transplant care team, facilities and gain ideas for strategies to advocate for the support you need from doctors, especially throughout the HSCT experience.

Tune in to learn more about how “the power of options” has been incredibly supportive for Carolyn, some of the latest MRI technologies at Cleveland Clinic, their reverence for stem cells, and Carolyn’s insider’s perspective. 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:

Carolyn’s blog: Mychroniclibrary.com
Cuddle clone
Matt Haig books