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

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

 

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

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

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