Join Tamara in her journey to HSCT and be reminded that you are enough (Ep. 41)

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

Have you ever been close to gaining 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?

Copy of HSCT Warriors Podcast S4.Ep. 4

After a long road to securing the diagnosis of multiple sclerosis, the first disease modifying treatment that Tamara tried eventually sent her liver into failure. the first two doses of her second shot at a DMT created bladder problems and damage to her ninth cranial nerve that caused extreme pain. Over the course of ten months as she fought for answers, Tamara was introduced to cannabis and found it 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 to kick off national Multiple Sclerosis awareness month with this deeper dive into so many aspects of life with MS and the rollercoaster ride of avoiding stress, treading feelings of isolation, fighting to advocate for yourself, and taking calculated risks to avoid desperation in order to find quality care or 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. 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

Find hope in the power of patience along Craig’s journey to HSCT (Ep. 40)

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 on to hope? 

HSCT Warriors Podcast S4.Ep. 4

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.  After changing careers, he spent some time without any sign of the disease until Craig was suddenly blind-sided by an experience while driving that left him nearly paralyzed. Without much explanation other than progression of his MS, he started on another disease-modifying-treatment that didn’t touch the continued progression and caused additional unwelcome 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 enough to leave him ineligible for the study criteria. Not willing to give up hope, Craig traveled from Chicago to Texas for a presentation about Clinica Ruiz and was sold on the possibilities that HSCT at Clinica Ruiz offered.

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.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.

Revisit HSCT logistics with Jay

Snowflake: MS Caregiver and HSCT Advocate
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?

HSCT Warriors Podcast Ep. 36 (1)

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, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and master 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.

Resources noted:

HSCT.blog
Clinica Ruiz, Puebla, Mexico
Aa Maximov Hospital, Moscow Russia
“So they say” manuscript/documentary

_________________________________

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.

Join caregiver Tamra in finding resiliency to face the whirlwind (Ep. 33)

Warrior: Tamra Minch
AI: MS Caregiver
HSCT: April 7, 2019
Superpower: Humility

Are you able to make time for yourself when caring for others? When faced with the whirlwind of life, what do you focus on? How does resiliency inform your outlook?

HSCT Warriors Podcast Ep. 33 (1)

When her husband was first diagnosed with multiple sclerosis, the whirlwind experience suddenly had Tamra searching for answers and alternatives to the pharmaceuticals that only guaranteed harsh side effects with terrifying probabilities. After learning more and connecting with individuals that had gone through HSCT, Tamra’s husband decided to take the leap and forgo medications to pursue HSCT. 

Tune in and learn more about their fundraising efforts to get to Clinica Ruiz, the turnabout to pursue treatment in Chicago, and how Tamra provides support to others in the HSCT family.

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.

_________________________________

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 launch of AIMS, the world’s first HSCT charity

Snowflake: AIMS Charity, UK
HSCT: MS Caregiver, Alison
Superpower: Dedication

Have you considered the possibilities of traveling abroad to pursue HSCT to halt your autoimmune disease? Are you striving to overcome obstacles like funding or researching HSCT? How do you turn a challenge into opportunity for others?

Copy of HSCT Ep 2-3 Alison Coates

Meet Alison, a caregiver for her warrior husband who was diagnosed with multiple sclerosis in 2010 and experienced significant declines in a short time. Once they determined HSCT would be the best avenue for treatment, they struggled to be accepted to their local clinic in the United Kingdom. After fundraising to pursue HSCT at Clinica Ruiz in Puebla Mexico, they were finally accepted for treatment in the UK and allocated the dollars already raised to begin AIMS; the world’s first charity to support individuals in their pursuit of HSCT.

Tune in to learn more about how Alison came to co-found AIMS, the world’s first registered charity to support UK residents with Autoimmune Disease and Multiple Sclerosis, with an emphasis on HSCT.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. 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.

Resources noted:
AIMS Charity
Symptom Checker
Clinica Ruiz, Puebla, Mexico
Aa Maximov Hospital, Moscow Russia

 

Season 2, Ep. 8: Meet Leta to learn more about HSCT for SPMS and be inspired to “dwell on the positive”

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

How affiliated are you with your autoimmune disease? How certain are you that HSCT might work for SPMS? How connected are you with your community?

HSCT Ep 2-8 Leta

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 wait for the disease to get any worse, she decided to pursue the quickest possible course to treatment.

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, and access the latest HSCT research and resources. 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.

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

#MS, #multiplesclerosis, #SPMS, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #knowyourbody, #dwellonthepositive, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast, #Possibility

Season 2, Ep. 6: Join Bonnie in remembering the importance of both mental and physical wellness

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 medical procedure, how well do you prepare for recovery?

HSCT Ep 2-6 Bonnie

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 relapses.

Tune in to hear more about Bonnie’s journey to Clinica Ruiz for HSCT, and the affirmation that mental wellness is just as important – if not more important – than physical wellness. Join the team of supporters that helped her create connections with a community of support close to home, as well as internationally.

Be sure to visit our website, HSCTWarriorsPodcast.com where you can find notes from today’s episode, submit ideas or feedback, and access the latest HSCT research and resources. 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, Stitcher, 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.

Resources noted:
Clinica Ruiz, Puebla

Aa Maximov Hospital, Moscow Russia

Essential oils
Healthy diet

#caregiver, #MS, #multiplesclerosis, #RRMS, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast, #ClinicaRuiz, #HSCTMexico

 

Season 2, Ep. 5: Meet Jay, HSCT Advocate

Snowflake: MS Caregiver and HSCT Advocate
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?

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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, and access the latest HSCT research and resources. Special thanks to musical genius Billy Alletzhauser for sharing his superpowers to create the soundtrack, edit, and master 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.

Resources noted:

HSCT.blog
Clinica Ruiz, Puebla, Mexico
Aa Maximov Hospital, Moscow Russia
“So they say” manuscript/documentary