Revisit this recent episode with Chris for CIDP awareness month

Snowflake: CIDP (chronic inflammatory demyelinating polyneuropathy)
HSCT: August 14, 2018
Superpower: ability to walk again

Have you ever lingered on the brink of life? Or wondered why diagnosis by exclusion takes so long? How much energy would you have to spin your wheels?

HSCT Ep 2-4 Chris Masters(1)

Meet Chris, a physical therapist familiar with physical movement, injury, and the understanding that when numbness, tingling, and pain consumed his abilities to move, he needed to fast-track some answers. Despite the shuffle from doctor to doctor without diagnosis, once his body completely shut down while driving to work, Chris and his wife knew they had to find their own answers and fully adorn the role of advocacy.

Tune in to learn more about the back-and-forth Chris experienced along his path of diagnosis with CIDP that led him to HSCT, the concern for others struggling to find the right diagnosis, the importance of self-advocacy, and the spirit of hope in sharing awareness.

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:
GBS/CIDP Foundation: https://www.gbs-cidp.org/

Rewind to hear Denise’s experience with HSCT for Stiff Person Syndrome

Have you ever found yourself distracted by concern for the people in your life that are stressed about your condition? Do you question whether the resources you find when researching your condition are of comparable quality to the resources your doctors can access? Have you learned how to embrace the courage to make your own decisions in healthcare? Tune in and revisit the fifth episode featuring Denise’s experience with HSCT for Stiff Person Syndrome:

Copy of HSCT Ep 2-12 Dave

Season 2, Ep. 12: Join Dave to learn strategies for HSCT recovery and hear exciting updates

Snowflake: Multiple Sclerosis
HSCT: 09/11/17
Superpower: New perspective

What is your potential for recovery? Do you have strategies to support your self in recovery? What mindset keeps you engaged? Join us in this last episode of Season 2 and catch up with Dave, learn strategies for recovery, and hear exciting updates!

HSCT Ep 2-12 Dave.png

As his positive outlook on HSCT has carried forward to influence his perspective on life, Dave continues to experiment on how his post-HSCT body will react to the challenges of moving to a different climate, raising a toddler, and changing jobs. Tune in to learn more about the strategies that he incorporates to make time to intentionally support his progress in recovery and wellness.

As Season 2 of the podcast closes with this episode, be sure to listen for exciting new updates about the launch of HSCT Warriors, Incorporated – a nonprofit organization founded by HSCT Warriors to promote awareness of HSCT as a treatment option for autoimmune diseases through education, outreach, advocacy, and personal connections.

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 to revisit an episode highlighting a HSCT Warrior from the first season. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resources noted:

HSCT Warriors, Incorporated

#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #newnormal, #adjustment, #positivemindset, #positivity, #positivevibes, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast

Season 2, Ep. 11: Join Bethany on her 15 year tenure with HSCT and helping others navigate our broken system

Snowflake: Multiple Sclerosis
HSCT: 03/08/05
Superpower: Heightened awareness

When you need a different course of action, how long will you bide your time? How confident are you among judgement, shock and awe? What will be your mindset at rock bottom?

HSCT Ep 2-11 Bethany(2)

Having so many family members plagued with autoimmune disease, Bethany had just run out of options to treat her MS when her mom happened to watch an interview with Dr. Burt. With a ‘must do’ attitude, Bethany confronted HSCT and the public eye with brave resolve. Proclaiming it to be “literally the best thing that ever happened in my life,” you’ll likely be inspired to shed any fears about HSCT when you hear more of Bethany’s journey.

Tune in to hear more about the reciprocity of community, how Bethany continues to promote HSCT and coach others on their own journeys, as well as insights on why HSCT isn’t an option offered by more doctors.

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:
Other HSCT veterans
Facebook groups

#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #advocacy, #selfadvocacy, #advocate, #selfcare, #rockbottom, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast

Season 2, Ep. 10: Get to know Eileen’s positive mindset and learn more about the HSCT rollercoaster

Snowflake: Multiple Sclerosis
HSCT: 01/05/17
Superpower: Knowing you have the rest of your life to look forward to

How much fear do you have when facing uncertainty? How do you adjust when riding a roller coaster? What does normal even feel like?

HSCT Ep 2-10 Eileen

Despite years of debilitating fatigue and cycling through nine different disease modifying therapies, Eileen had a suspicion that someday, stem cells would help alleviate her pain. After researching the possibility of stem cells on her own, she found immediate support from her neurologist to pursue HSCT at Northwestern in Chicago.

Tune in to hear more about her experience of living with MS for twenty years, changes experienced post-HSCT, and learn more about the recovery roller coaster that has been life changing for Eileen.

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:
Yogaglo
Myofascial release

#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #newnormal, #adjustment, #positivemindset, #positivity, #allgood, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast, #DrBurt, #northwesternmemorial, #northwestern

Season 2, Ep. 9: Join Brooke on her journey to Moscow and hear how she was “cradled in care”

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

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

HSCT Ep 2-9 Brooke

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, 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:
Brooke’s blog: https://msslick.com/
Brooke’s book website: www.brookeslick.com
MS Gym
Yoga
Dr. Fedorenko at Aa Maximov Hospital, Moscow Russia

HSCT Warriors Podcast featured on Causepods!

so grateful for the opportunity to share more information about HSCT and the HSCT Warriors Podcast on the Causepods show… highlighting “the use of podcasts to raise awareness for a good cause... Whether that’s a non-profit, charity, medical cause, social justice movement, or anyone looking to create a positive impact in the world, from the local level to the global population.”

Beyond grateful for all the good people who have helped to make the HSCT Warriors Podcast possible, especially my very good friends Billy Alletzhauser and Jill Ross… fellow warriors Ali Strong and Carol Cosme… and of course, all the brave warriors who have taken time for an interview to share their journey with HSCT. It’s not easy to be vulnerable and share personal stories with an invisible audience, yet I am ever grateful to everyone who shares to help illuminate the invisibilities of autoimmune disease, recognize the possibilities of a future free from disease progression, connect through our shared experience, and advocate for an inclusive society.

So glad you’ve joined us!

Be sure to check out my interview and other stories about good causes at Causepods.org and stay tuned for the upcoming episodes of our Season 2, as well as updates about the exciting new venture, HSCT Warriors, Inc. …

In the meantime, be kind. Be well.

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

Snowflake: 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. 7: Meet Marlo, a poster child of courageous resilience with brilliant hope

Snowflake: Multiple Sclerosis and Lyme Disease
HSCT: anticipated by June, 2019
Superpower: knowing her body

How does one come to terms with the brutality of multiple sclerosis? How many disease modifying drugs have caused you significant complications? Do you know what it feels like to live a life without a chronic disease?

HSCT Ep 2-7 Marlo(1)

After seeing too many doctors that wouldn’t listen, receiving a diagnosis at 13 years young, and spending eleven years trying nearly every disease modifying treatment available, Marlo developed inflammation everywhere in her body that led to countless additional potential diagnoses. Having very few memories of her childhood or of positive experiences with doctors, Marlo has persevered with an admirable, courageous, and brilliant sense of hope for the future.

Tune in to hear more about Marlo’s journey with multiple sclerosis and how she is preparing her mind and body to become the first MS patient treated with HSCT according to the BEAM protocol (pending review) at the Dana-Farber Cancer Institute in Boston, Massachusetts.

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:

Dana-Farber Cancer Institute in Boston, Massachusetts

#MS, #multiplesclerosis, #RRMS, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #stemcells, #snowflakes, #superpowers, #knowyourbody, #bodyknowing, #hope, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast, #DanaFarberCancerInstitute, #HarvardAffiliate #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