Learn more from Jan-Marie along her recovery rollercoaster and find hope (Ep. 78)

Warrior: Jan-Marie
AI: Multiple Sclerosis
HSCT: June 16, 2020
Superpower: Hope

What do you think is happening? How do you advocate for yourself when seeking answers?

Nearly immediately after HSCT, Jan-Marie experienced significant improvements with her balance and walking and knew in her heart that HSCT worked to halt progression. So, when Jan-Marie began experiencing new challenges, pain, and neurological issues at just 5 months post-HSCT, she became very determined to find answers. Although her doctors insisted that the multiple sclerosis had returned, Jan-Marie had a feeling that what she was experiencing was in fact very different from multiple sclerosis. Tune in to learn more about the variety of options that Jan-Marie pursued, from a top-off of chemo to spending a month in the hospital for nearly every test imaginable, including two MRIs that showed no MS-related activity.

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:

Hydrafil Feasibility Study by RegelTec

Talk to a Warrior at HSCTWarriors.org

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

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.

_________________________________

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

Revisit our chat with Jan-Marie, one of the first to receive HSCT amidst the pandemic (S5 replay)

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

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

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.

Learn with Amy as she prepares for HSCT and be inspired to move beyond judgment (Ep. 70)

Warrior: Amy Capel
AI: Multiple Sclerosis
HSCT: scheduled for October 2021
Superpower: Thinking

What is your response to the judgment of others? To what extent do you control your mindset? Are you committed to eliminating negativity?

When Amy was first diagnosed with multiple sclerosis, she not only struggled to understand the disease, she ended up struggling with a storm of negative side effects from the first medication she tried. Having a friend who went through HSCT five years ago, tune in to learn more about why Amy is just now pursuing HSCT, how she is navigating the opinions of her doctors, and how she is committing to making the best decisions for herself and her family. 

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.

Join Leta in her practice to dwell on the positive in life (S2 replay)

Warrior: Leta Krieger
Snowflake: Secondary Progressive Multiple Sclerosis
HSCT: 07-08/18
Superpower: Support from husband and friends

How affiliated are you with your autoimmune disease? How connected are you with your community?

After living with MS for nearly 40 years, when Leta first heard of HSCT while watching the BBC on vacation, she researched it and considered the chance that HSCT could possibly halt her progression. Rather than take a chance on letting her disease run her life, she decided to pursue the quickest course to treatment possible. 

Tune in to learn more about the fabulous care, comfort, and personalized service, and absolve any concerns in hearing more details of the “well-oiled machine” that is HSCT at Clinica Ruiz. Be inspired to treat your diagnosis as an interloper and “dwell on the positive”.

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: 
LetaKrieger.blog
Clinica Ruiz, Puebla
MS Gym
Any List app

Revisit Bonnie’s affirmation of mental health considerations before and after HSCT (S2 replay)

Snowflake: Multiple Sclerosis
HSCT: 7.10.18
Superpower: divine positivity

How thick is the fog on your brain? How clearly are you able to think and plan? When gearing up for a significant procedure, how well do you prepare for recovery? 

After years of experiencing symptoms without answers until finally receiving a diagnosis of multiple sclerosis in 2016, Bonnie experienced heart complications with her first line of treatment that were exacerbated after abruptly stopping her medication. After finding HSCT as an option, she knew she would need to move quickly in hopes to halt her relap

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 noted: 
Clinica Ruiz, Puebla
Aa Maximov Hospital, Moscow Russia
Essential oils
Healthy diet

Revisit powerful insights from Jay’s experience caregiving for his wife (S2 replay)

Warrior: Jay Blankenfeld
Snowflake: MS Caregiver
HSCT: March 18, 2018
Superpower: “Knowledge we could not do it alone”

How do you shift focus from self to other when faced with taking on the role of caregiver? When you ask your neurologist about HSCT as an option for treatment, what is their reaction? Do you have what it takes to construct space for success?

Meet Jay, a proactive planner who made a conscious decision to move past his own emotions to focus on helping his wife navigate her diagnosis of multiple sclerosis and research a best course of action. After learning more about multiple sclerosis, the course of progression, side effects of DMTs, and the scary uncertainties that come with multiple sclerosis, he pushed his wife to understand more about HSCT.

Tune in to hear more about how quickly they moved to pursue HSCT, their experience with Clinica Ruiz in Mexico, strategies for caregiving from abroad, and how Jay was able to create space for his wife and their three children to make their way along the journey of 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:
HSCT.blog
Clinica Ruiz, Puebla, Mexico
Aa Maximov Hospital, Moscow Russia
“So they say” manuscript

Meet Erin and be inspired to find empathy and connection despite feelings of isolation (Ep. 65)

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

Be inspired by Vic’s resolve, despite the naysayers and positive COVID tests (Ep. 63)

Warrior: Vic Bonilla
AI: Multiple Sclerosis
HSCT: Oct 2020
Superpower: unbreakable resolve

Have you ever felt like an observer of your own 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.