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?

img_0165

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

Season 2, Ep. 4: Learn more about CIDP with Chris

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

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/

Season 2, Ep. 3: HSCT Caregiver and AIMS Charity co-founder, Alison

Snowflake: AIMS Charity, UK
HSCT: MS Caregiver
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?

HSCT Ep 2-3 Alison Coates(2)

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

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #warriors, #HSCTWarriors #HSCTWarriorsPodcast #podcast #autoimmunedisease, #RRMS, #MS #multiplesclerosis, #lupus, #scleroderma, #cidp, #type1diabetes, #stiffpersonsyndrome, #rheumatoidarthritis, #symptoms, #aisymptoms, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers #aimscharity #AIMS, #clinicaruiz, #hsctmexico, #doctorruizargüelles, #doctorruiz, #symptomchecker, #improvement

Season 2, Ep. 2: Katie’s Hope Journey

Snowflake: RRMS
HSCT: Chicago, scheduled in March 2019
Superpower: walk with God

Where do you find confidence to move forward? How do you take the reins and find the right mindset? Who do you consider to be family?

HSCT Ep 2-2 Katie(1)

Join us along Katie’s Hope Journey and learn from this interview with our first HSCT Hopeful. After spending 9 years battling multiple sclerosis, Katie found the mindset and the communal support to tackle HSCT head on. Despite her roller coaster of seeking insurance approval, the denial that led to fundraising and efforts of advocacy, Katie is now scheduled for pretesting and if all goes well, to undergo HSCT in March, 2019.

Tune in and learn strategies for fundraising, answers to lingering questions, and how connecting with other HSCT veterans helped Katie build genuine excitement for 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:
Personal blog: Katie’s Hope Journey to end her MS
End my MS blog: by Anna Wise

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTWarriors #HSCTWarriorsPodcast, #warriors, #podcast, #autoimmunedisease, #RRMS, #MS, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers

Season 2, Episode 1: Update with AliStrong

Snowflake: RRMS
HSCT: 11/6/17
Superpower: Gratitude

Where do you find gratitude in life? Are you just surviving in life, or are you thriving?

HSCT Ep 2-1 Ali

Tune in for updates from Ali Strong and find out what our first HSCT Warrior has been up to since her first interview. Find out more about the healing that Ali has experienced, her training and research to grow her #alistrong business, and get inspired to shift from just surviving to thriving.

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.

almost there…

… and so grateful for the space to create Season 2!! While we’ve been busy in the recording studio, we’ve also been working on a new logo and are excited to be near ready to launch our new season with a new look. We hope you stay tuned and if you find a moment, share your feedback… what has been your favorite episode so far? Is this one of them?

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?

hsct ep 04 dave

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 for Dave’s strategies to keep a positive mindset, accept all aspects of any process, “take a beat” and embrace emotions, including the difficult, stressful, and 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

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

recording still in progress…

Can you get comfortable with letting go of expectations? We invite you to revisit Episode 3 from Season 1 to learn from Chicago resident Ellie, while we continue preparing for Season 2… stay tuned as we hope to release new episodes in February 2019!

hsct ep 03 ellie(1)

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 another episode, highlighting another HSCT Warrior. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Resources noted:

HeartMath: https://www.heartmath.com

Jiyo: https://jiyo.com/home

YogaGlo: http:www.YogaGlo.com

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

 

Revisiting

Have a listen to Episode 2 of Season 1 while we await our second season… thanks for your patience, and thanks for listening!

hsct ep 02 dustin

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. Until then, be a snowflake and embrace your superpowers.  Be kind. Be well.

Hosted by: Dr. Jen Stansbury Koenig aka “Zen Jen”
Tags: #HSCT, #HSCTwarriors, #autoimmunedisease, #RRMS, #HSCTsnowflakes, #HSCTsuperpowers

recording in progress…

… we are continuing work this month to record new episodes reflecting some exciting new journeys. We hope you’ll join us in revisiting episodes from Season 1 while we await Season 2. Thank you for your patience!

hsct ep 01 ali

Be kind, be well, and stay tuned!

Calling all warriors…

invitation

As we continue working on new episodes, we are looking to talk with more autoimmune warriors, caregivers, and others – affected by or interested in – the haematopoietic stem cell transplant (HSCT). If you would be willing to share your experience with HSCT, we would love to talk with you!

Reach out to schedule an interview with Zen Jen today!