#multiplesclerosis

Revisit our first conversation with hopeful DeWayne as he pursued the BEAT-MS trial (S5 replay)

March 9, 2022 — Leave a comment

Warrior: DeWayne Durr
AI: Relapsing-Remitting Multiple Sclerosis
HSCT: scheduled for September, 2020
Superpower: prayer and understanding

How comfortable are you with difficult or impossible situations? How direct are you about the care you receive from your doctors? When faced with the chance of being randomly assigned to receive HSCT, would you feel conflicted?

After DeWayne researched the disease modifying therapies available to him, he chose to clean up his diet and forgo drugs, as he had also researched HSCT and barely missed the chance to be treated by Dr. Burt in Chicago before he closed the clinical trial. Tune in to hear more about how DeWayne advocated for consideration for the BEAT-MS trial at the Cleveland Clinic and the winding path to get there despite other doctors’ opinions, the details of participating in the clinical trial, and COVID. Learn how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.

Tune in and learn more about how DeWayne managed to secure insurance coverage and approval to be the first patient to be treated at Cleveland Clinic off-trial for multiple sclerosis.

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.

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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.

Check-in with Ron along his recovery rollercoaster and be inspired by his positivity and perseverance (S5 replay)

March 2, 2022 — Leave a comment

Warrior: Ron Gabrielli
AI: Multiple Sclerosis
HSCT: 5/6/17
Superpower: Hope

How inspired are you to help others? How important are caregivers in your journey with disease?

After enjoying such an incredible experience at Clinica Ruiz, Ron and his wife have spent countless hours connecting with individuals to answer questions and share support to help people make informed decisions about HSCT. While all Ron cares about is paying forward the support he received in his experience, he joins so many others post-HSCT who question the systems that keep HSCT out of reach for so many. 

Tune in and learn more about the various strategies that Ron has tried out during his three-plus years of recovery, how he managed to check his pride, and all the hope he holds on to as he continues reconciling with the realities of 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 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: 
Tao Patch
Ex N Flex

Reconnect with Chelsey and be inspired to move, live and prosper (S5 replay)

February 23, 2022 — Leave a comment

Warrior: Chelsey Bell
Autoimmune: RRMS
HSCT: 7/11/18
Superpower: Self awareness

How often do you find time to reflect on what works for your body? Have you been able to truly appreciate time with yourself? How does it feel to connect with someone else over commonalities?

Sharing insights to her solo experience getting to Moscow, Chelsey offers so much inspiration for the importance of mindset, taking time to figure out what works, and finding lessons from her younger self, and accepting challenges without holding on to frustration. With updates on her fundraising experience and securing an Alinker to promote her recovery, Chelsey shares an abundance of wisdom and resources.

Tune in to hear more about Chelsey’s journey to Moscow for HSCT and how she is faring after 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 of HSCT locations. 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:
Eye mask
Alinker
Nonprofit: Move, Live, Prosper
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Revisit our chat with Jan-Marie, one of the first to receive HSCT amidst the pandemic (S5 replay)

February 16, 2022 — Leave a comment

Warrior: Jan-Marie Morgan
AI: Multiple Sclerosis
HSCT: June, 2020
Superpower: Patience

How often do you take doctors’ first opinions without questioning? How often do you take time for self-care?

Not only does Jan-Marie set a shining example to approach life with optimism and positivity, she offers insight into what it’s like to research scientific evidence to inform opinion, foster support both emotionally and financially, and gain confidence to pursue HSCT during the COVID pandemic. As a nurse practitioner by trade, Jan-Marie used her training in evidence-based medicine to be informed about her options with disease modifying therapies that ultimately did not work. After finding herself frustrated and hopeless with the progression of her multiple sclerosis, Jan-Marie was introduced to HSCT by a girlfriend and within hours completed the application, and in days secured a schedule.

Tune in to hear more about Jan-Marie’s journey to HSCT, changes to the typical experience in Monterrey at Clinica Ruiz for COVID, and how Jan-Marie is faring the first few weeks post-transplant.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 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:
Calm app

Be inspired and find commonality in John’s appreciation for HSCT (S4 replay)

February 9, 2022 — Leave a comment

Warrior: John Taylor
AI: Multiple Sclerosis
HSCT: September 2019 at Northwestern
Superpower: Appreciation

Have you ever tried to describe the sensation of severe pain, despite knowing that you’re also physically numb? When side effects and risk outweigh the good, how do you make a choice? How do you feel when selected for the chance of a lifetime, knowing others have to miss that chance?

An infographic with the HSCT Warriors Podcast logo and details about the interviewee depicts a man squinting his face in anger or pain, with one eye open and the other eye covered by his right hand which is glowing red as though in pain.

After years of living with symptoms considered insignificant, John finally received a diagnosis of multiple sclerosis in 2010 from his third opinion doctor. While the first disease modifying therapy seemed to work for nearly a decade, just as John began to fear a future with little hope about his new normal, his wife stumbled upon HSCT in time for him to be treated in Dr. Burt’s last cohort before sabbatical.

Tune in and learn more about John’s experience with loss of balance, shooting pains, burning sensations, optic neuritis, and other symptoms that he experienced with multiple sclerosis.

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 immediately.

Resources:
Patient care manuals for post-HSCT
Research articles

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

January 26, 2022 — Leave a comment

Warrior: Graciela
AI: Multiple Sclerosis
HSCT: January 2021
Superpower: value for life

How do you find peace of mind? Do you feel supported by family and doctors? How do you explore purpose in 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.

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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.

Revisit the power of compassion for Jess during myeloablative HSCT in Sydney (replay from S4)

January 26, 2022 — Leave a comment

Warrior: Jess Green
AI: Multiple Sclerosis
HSCT: February 2019 at St Vincent’s Hospital, Sydney – trial by the Kinghorn Cancer Centre
Superpower: Love and compassion from others

When your doctors run out of options, are you ready to suggest a course of action? Despite the scary struggle or the bad times, can you find the goodness? How strong is your support system?

With a relatively quick diagnosis of Multiple Sclerosis after her first sign of an issue, Jess researched treatment options and found her doctors at a loss for how to combat her relapses after she failed three different disease modifying drugs in just two years. She encouraged her doctors to send her records to the team running the HSCT Clinical Trial at St. Vincent’s Hospital in Sydney and suddenly found herself accepted to proceed with HSCT.

Tune in and learn more about the importance of connections, compassio nate caregivers, and the struggle that Jess experienced when she experienced an allergic reaction during the BEAM protocol with Dr. John Moore and Dr. Barbara Withers at Kinghorn Cancer Centre in Sydney Australia.

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 immediately.

Revisit our conversation with Tamara and be reminded, you are enough (S4 replay)

January 12, 2022 — Leave a comment

Warrior: Tamara Netzel
AI: Multiple Sclerosis
HSCT: Dec. 2019, Monterrey Mexico
Superpower: truth

Have you ever been close to a resolution, only for it to slip through the cracks? How long has it taken for you to feel supported by your doctors? What would it look like if you pledged to help just one person get to HSCT?

The HSCT Warriors Podcast logo appears at the top of a woman pictured with her eyes closed, shouting into a megaphone that she is tightly gripping with both hands. A question asking "What if you help others to learn about HSCT?" is placed on her shoulder, above a paragraph to identify the interviewee as Tamara Netzel, who battled the autoimmune disease of multiple sclerosis by pursuing HSCT in December 2019 in Monterrey, Mexico, and revealed her superpower to be truth.

After a long road to diagnosis, the first disease modifying treatment that Tamara tried sent her liver into failure. The second DMT created side effects within the first two doses including bladder problems and damage to her ninth cranial nerve that caused extreme pain over the course of ten months as she fought for answers until she found cannabis to be her only relief. Finally after a third DMT proved ineffective, Tamara found research on HSCT and by connecting with other HSCT Veterans about their experience with Clinica Ruiz, and was ultimately convinced to travel abroad where she found better care than she had ever before received.

Join us in this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation and taking calculated risks to avoid desperation in order to find quality care or sense of belonging in 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. 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 immediately.

Resources:
McDonald Criteria
Wahl’s Diet
CruelConsequences.org
Dateline NBC
HSCT Warriors, Inc. 
IG blondewndrwmn

Listen again to how Craig tapped the power of patience through his journey with HSCT (S4 replay)

January 5, 2022 — Leave a comment

Warrior: Craig Witkowski
AI: Multiple Sclerosis
HSCT: September 2019 in Puebla
Superpower: Patience

Do you find it tough to maintain patience with yourself or doctors? How easily do you find a positive mental outlook? How tightly do you hold hope?

The HSCT Warriors podcast logo frames the top of the image that depicts a strong man waiting at the bottom of a tall staircase, pondering his next steps. The caption identifies the interviewee, Warrior Craig Witkowski, battling the autoimmune disease of multiple sclerosis, who received HSCT in September 2019 in Puebla, and named his superpower as patience.

After being on a first-line drug to hold off initial onset of his MS symptoms, Craig found benefit for a few years until he stopped the medication due to unwelcome side effects, which then caused issues for a couple of years. After changing careers, he spent time without any sign of the disease and then suddenly Craig was blind-sided by an experience while driving that left him nearly paralyzed. Without much of an explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch his disease progression and caused too many side-effects.

Craig researched more about stem cell treatments because his doctors could only offer vague uncertainties and although he found Dr. Burt’s clinical trial at Northwestern, after spending a year fighting insurance to pursue HSCT, Craig learned his disease had progressed, leaving him ineligible for the study criteria. Not willing to give up hope, Craig traveled to Texas for a presentation about Clinica Ruiz and was sold on the possibility that HSCT offered him.

Tune in and learn more about Craig’s unique challenges, fundraising efforts, power of patience, tremendous support of family and friends, and will to find his way to HSCT at Clinica Ruiz in Puebla, Mexico.

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 week 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.

Revisit meeting Ahna and be inspired to heal from the inside out (S3 replay)

December 1, 2021 — Leave a comment

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

aired 10.16.19

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.org where you can find notes from today’s episode, submit ideas or feedback, or connect with the HSCT Warriors, Inc. nonprofit and “Talk to 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 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.