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:
Warrior: Dave Carey
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!
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:
#MS, #multiplesclerosis, #autoimmunedisease, #HSCTsnowflakes, #HSCTsuperpowers, #snowflakes, #superpowers, #newnormal, #adjustment, #positivemindset, #positivity, #positivevibes, #advocacy, #selfadvocacy, #advocate, #HSCTforMS, #HSCTWarriors, #HSCTWarriorsPodcast, #Podcast
Warrior: Bethany
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?
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
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?
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
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?
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
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?
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
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?
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
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?
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
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?
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
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?
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/
HSCT Warriors Podcast 