Check-in with Denise about recovery after HSCT to halt stiff person syndrome (S3 replay)

Warrior: Denise Bishop
AI: Stiff Person Syndrome
HSCT: 9/12/17, Chicago
Superpower: empathy

How often do you listen to the voice in your head? How much can you afford to endure? What are your strategies to sort through all that needs attention?

Join us to check in with Denise following her two-year check up post-HSCT in Chicago. Learn more about the unexpected twists and turns along her ongoing rollercoaster, and how Denise faced the fluctuations that led to another autoimmune diagnosis, a traumatic fall, and tragic loss of her grandson. 

Despite all the setbacks she has faced, Denise holds firm to a positive attitude and resilient mindset that is inspiring for any warrior. Tune in, find connection, and share in the sense of community.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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 immediately.

Revisit the power of intention and be inspired by Ahna’s journey with HSCT (S3 replay)

Warrior: Ahna Crum
AI: Multiple Sclerosis
HSCT: April, 2016 in Moscow Russia
Superpower: Shapeshifting

What motivates you to find curiosity in life? Have you ever been let down by a one-size-fits-all approach? How equipped are you to adapt?

After suffering significant relapses from an early age, in her late twenties Ahna found HSCT through her research trying to avoid moving into an assisted living facility. With great determination and a positive mindset, Ahna found Moscow to be a  welcoming, supportive place.

As someone who leaped into HSCT without any doubts, Ahna found the recovery rollercoaster to be quite the challenge. Tune in to find out more about the post-transplant complications that Ahna faced, how she was able to find her own solutions to heal her body, and how she found her passion to become a partner for HSCT warriors along their journeys.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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.

Resources: 

What the Heck Should I eat? by Mark Hyman

Psychobiotic Revolution: Mood, Food, and the New Science of the Gut-Brain Connection by Scott C. Anderson

MS Gym Podcast

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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 immediately.

Revisit Paul’s journey to HSCT and fill your cup with joy (S3 replay)

Warrior: Paul Wheeler
AI: Secondary Progressive Multiple Sclerosis
HSCT: April 10, 2017
Superpower: Dancing

Have you experienced the compassion of humanity? Is your approach to life with disease more of the “cup half empty” or “half full” mindset? Just how full is your cup?

As someone who prefers “research to the nth degree” about medical decisions, Paul weighed the odds of HSCT and determined them better than the 100% chance his disease would progress. Thanks to HSCT, Paul has not only found clarity of mind without the burden of “cog fog” he recognizes that other unexpected improvements he has been so grateful for are not guaranteed. 

Tune in to learn more about how Paul rallied the support of his family and community to help raise money in order to get from the UK to Mexico, including a “really weird” journey made of “a marathon a day” spanning 250 miles in his wheelchair. Enjoy this inspiring story of energetic joy.

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. 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 reach out if you’re interested in sharing your story. We would definitely love to learn how the podcast has helped your journey with autoimmune disease… if you could take a moment to share your story, 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 immediately.

Revisit Brooke’s journey to HSCT in Russia and find your path to normal (S2 replay)

Warrior: Brooke Slick
Snowflake: Multiple Sclerosis
HSCT: May, 2013 in Moscow, Russia
Superpower: Patience

How do you navigate your diagnosis? Would you describe your perspective as positive or negative? How do you normalize your disease? 

After years of experiencing symptoms, Brooke was diagnosed with RRMS in 2006 and cycled through various disease modifying therapies, participated in a clinical trial, and sought alternatives to avoid the risk of developing PML. Despite working full time and distracting herself from the avalanche of symptoms, Brooke found herself transitioning into Secondary Progressive Multiple Sclerosis.

Inspired by the first American “ninja warrior” to receive HSCT in Moscow who blogged every detail about her experience, tune in to learn more about how Brooke focused her attention and perspective on the gifts and possibilities of HSCT. Brooke’s realistic perspective helped her embrace a positive approach and tackle the treatment that worked for her.

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:
MS Gym
Yoga
Aa Maximov Hospital, Moscow Russia

Learn how Rachel managed CIDP before myeloablative HSCT at the CBCI in Denver (Ep. 66)

Warrior: Rachel Gallery
AI: Chronic Inflammatory Demyelinating Polyneuropathy
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 despite significant complications (namely, graft v. host disease) amid the COVID pandemic. With so many helpful tips for mindset to accept support through the tough times, 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.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.

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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:
Colorado Blood Cancer Institute 
HSCT Warriors Podcast

Continue along Joceline’s journey and learn the practice to work-around covid (Ep. 62 part 2)

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.

Join Christy on her way to Monterrey and learn more about the power of connections (Ep. 60)

Warrior: Christy Miller Kuziensky
AI: Multiple Sclerosis
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.

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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:
Clinica Ruiz: https://hsctmexico.com
HSCT Warriors: https://HSCTWarriors.org

Meet Ovi on her way to Puebla and learn what it means to be strong-strong (Ep. 59)

Warrior: Ovi James
AI: Primary Progressive Multiple Sclerosis
HSCT: February 2021
Superpower: Strength, Bravery, Grit, Courage

When faced with adversity, are you able to advocate for yourself? Are you someone who can find gratitude often? What gifts can you share with the world?

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

Welcoming Season 6 and personal growth with Ali Strong (Ep. 58)

Warrior: Ali Roberts
AI: Multiple Sclerosis
HSCT: 11/6/17
Superpower: Gratitude

How often do you set intentions? Are you comfortable stepping into the unknown? How easy is it to consider yourself first?

Our season openers would not be the same without checking in with Ali Strong about her experiences post-HSCT with diet and nutrition, exercise, mindset, wellness, and personal challenges to continue promoting wellness, health and longevity. Check in with Ali to reflect on all that has changed during her experience with HSCT recovery. Join us for this informative, authentic, and engaging dialog that highlights the importance of reaching out for help.

Please share your ideas for upcoming episodes 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 with contact information for HSCT clinics. 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:
AliStrong: facebook.com/pages/AliStrong
HSCT Warriors, Inc.: https://hsctwarriors.org
Genomic sequencing: https://yourgenomicresource.com/

Revisit Dave’s reflective journey through HSCT and gain valuable strategies

Warrior: Dave Carey
AI: Relapsing Remitting Multiple Sclerosis
HSCT: 9/11/17, Chicago
Superpower: Perspective

When you pause to reflect about what has changed during a year, what do you see or feel? If you take time to recognize your own personal successes, have you ever hesitated to share what you find with others? 

Meet Dave, a warrior who tried nearly every treatment available to treat his multiple sclerosis before finally receiving HSCT November 11, 2017 at Northwestern Memorial Hospital. Dave used a cane and experienced regular active relapses before transplant so he was ready for a life-changing event. As he worked to get things in order and prepare for the worst, he ended up surprised when Dr. Burt said to him, “I can help you” without caveat. 

Dave approached HSCT with a commitment to “not fight anything” except his eagerness to get back to normal once he returned home. Listen to Dave’s strategies for keeping a positive mindset, accept all aspects of the process, “take a beat” and embrace the emotions including the difficult, stressful, or uncomfortable ones. Dave’s story will inspire you to “like yourself more,” embrace family and friends, develop an affinity for unexpected relationships, and experience life with a newfound perspective.

Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and produce the audio to make this podcast possible. You can find us both when you subscribe on SoundCloud, iTunes or wherever you find your podcasts.

Take a moment to leave a review because your feedback will help to develop even better episodes, and your ratings will help other people find the show. Tune in next Wednesday for a brand new episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resource: 
Bradberry, T., & Greaves, J. (2009). Emotional Intelligence 2.0. TalentSmart. ISBN-10: 0974320625

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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.