MSMS: The Many Stories of Multiple Sclerosis

Colleen Daniels

Welcome to MSMS: The Many Stories of Multiple Sclerosis Here, you'll hear real stories from real people—Australians and occasionally others from around the world—sharing their experiences of life with Multiple Sclerosis (MS). The podcast began with Colleen's hope to build greater understanding of Hematopoietic Stem Cell Transplant (HSCT), by spotlighting the stories of Australians living with MS who had undergone this intense and often misunderstood procedure. What started as a focus on HSCT has since grown to include a range of conversations relevant to Australians living with MS—honest, heartfelt stories that speak to the reality of this progressive disease. By sharing our experiences, we support one another, reduce the isolation that so often comes with MS, and foster a sense of community—while also raising much-needed awareness. The first series of MSMS centres on HSCT—the decision-making process, the challenges faced, and the individual outcomes that follow. In Episode One, you’ll meet your host Colleen and her husband Kel, as they take you on their extraordinary journey to Moscow, Russia. It was there, just 5 years  married and desperate to stop the rapid progression of her MS, that Colleen underwent HSCT. What followed was an ordeal of unexpected challenges—physical, emotional, and logistical. Through it all, Colleen the patient, and Kel her steadfast champion. Their story has been shared in Australian newspapers, radio and TV—but here, in their own words, Colleen and Kel share even more of their remarkable story, behind the headlines.  ---Disclaimer:This podcast is not intended to replace professional medical advice. The views expressed in this podcast are those of the host or guest(s). No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given.Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition.  Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situations experienced before, during or after HSCT - some of which may be disturbing or upsetting for some.   In Australia https://beyondblue.org.au and Lifeline on 13 11 14 or https://www.lifeline.org.au are organisations which provide assistance  - do please look after yourself.

  1. 1 DAY AGO

    When Hope Meets Deception: MS Treatment Scams

    Falling prey to a scam can happen to anyone, but for those living with multiple sclerosis, the risks can hurt more than our bank account. The uncertainty of MS can create vulnerabilities that scammers exploit. It’s important to stay hopeful about advances in treatment — but also to stay informed, so hope isn’t taken advantage of. Note from Colleen: This episode is about helping people with MS avoid falling victim to scams that promise “cures.” While much of what I share in this episode is my perspective, the fact is that scammers do prey on our hopes of overcoming MS and all its symptoms. We do need to remain alert to these dangers. I truly hope this episode helps anyone considering an untested or advertised  treatment. Stay safe. 💛 Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    11 min
  2. 8 SEPT

    What is Car-T Therapy?

    In this episode, Colleen shares information on Car-T therapy. If interested in learning more or potentially participating in clinical trials, resources like the Australian New Zealand Clinical Trials Registry (ANZCTR) https:/www.anzctr.org.au provide valuable information about ongoing studies. Eligibility criteria are specific, and participation in any trial is an important decision that should include thorough discussions with your healthcare team. Notes from Colleen: The information I share in this episode comes from sources that are freely available — I’ve put it together in a way that I hope feels clear and helpful, in order to share, start conversations, and support others in the MS community who may be interested. I am not a medical professional. I mention a couple of studies, one that treated three people with progressive MS using CAR-T therapy. While a very small number of participants all three  saw improvements in mobility, hand dexterity, and resolution of oligoclonal bands (a marker of inflammation in the spinal fluid).  The full article is here: three progressive MS patients show improvement Please remember this podcast is for general information only and should never replace advice from your own healthcare team. Thank you, Colleen Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    11 min
  3. 2 SEPT

    Beyond the stories - let's go ...

    Welcome to a turning point in the MSMS podcast journey! While I'll continue sharing conversations with people living with or touched by Multiple Sclerosis, I'm adding a new dimension - solo episodes, exploring topics that matter to our community and will sprinkle in some possibly different perspective on life beyond diagnosis - beginning with the topic of Diet and MS explored a little in this episode. If you have a story around your MS to share, email msmspodcast@proton.me to arrange time for recording your story for the podcast!  Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    8 min
  4. 11 JULY

    Caregiver to patient – Teresa returns to share her post-HSCT recovery

    Listen as Teresa shares her post-treatment challenges – beginning with a looming cyclone. Despite her husband's careful preparations for Teresa's  recovery, challenges came one after the other. Even with the setbacks, Teresa's journey from caregiver to patient has come full circle, creating deeper connections and understanding along the way. Teresa's story offers valuable insights for others considering HSCT treatment. If this story has reached out to you, your story could reach out to touch, help or support someone else. Just email Colleen at msmspodcast@proton.me Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    36 min
  5. 20 MAY

    Navigating Overseas Stem Cell Treatments : Colleen Shares Her Perspective (a short episode)

    Overseas Stem Cell Treatments for MS  In this episode, I speak from my personal experience of exploring stem cell treatments in the hope of slowing the progression of my MS. I am not medically qualified, so I speak from the perspective of someone who has actively searched for options and tried to make sense of what I found was being claimed. Ultimately I underwent HSCT (Hematopoietic Stem Cell Transplant) in 2017, at that time available in reputable hospitals in Mexico, Singapore, and Russia. Treatments offered overseas today can vary greatly. Some overseas stem cell 'packages' offer other wellness or support therapies eg physiotherapy or acupuncture, alongside the stem cell component. Others combine stem cell injections with added procedures such as vein "unblocking"—I believe that procedure may be CCSVI (chronic cerebrospinal venous insufficiency)—which was trialled in relation to MS around 2013. MS Australia advise on their website that the results of that trial were disappointing:  🔗 MS Australia – Disappointing Results from CCSVI Trial To help those thinking about these treatments, I’ve created a simple infographic with five questions to consider. These questions are a starting point only. There is much to weigh up, and it’s essential to seek advice from qualified medical professionals before making any decision about your health treatments. Many are keen to hear the truth around the various MS stem cell procedures being offered - if you are in Australia and have had a stem cell treatment for MS, and would like to share your story on the podcast please email msmspodcast@proton.me - thank you, Colleen Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    5 min
  6. 25 APR

    Bend Like Bamboo: Simple Joy Leads Amanda From Paralysis To Practitioner

    Amanda Campbell's journey from MS diagnosis to becoming a kinesiologist  demonstrates healing beyond the conventional.  The pivotal moment? An evening with friends and family that ignited possibility and revealed a new  path forward through her MS.  In this episode we hear Amanda's story about her discovery of the relationship between mindset, the nervous system, and physical healing. Now a sports kinesiologist and founder of Bend Like Bamboo, Amanda helps others transform their relationship with chronic illness. Whether you're navigating a health challenge or simply interested in the mind-body connection, Amanda's story demonstrates the human capacity for resilience and transformation. As she puts it, "Flexibility in our mindset impacts everything that matters – our body's ability to repair, how happy and resilient we are, and how connected we feel." Amanda's story might just change how you think about healing, recovery, and what's possible - further information and resources as mentioned by Amanda in this episode can be accessed by visiting bendlikebamboo.com  Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    35 min
  7. 16 MAR

    Beyond Diagnosis: Ashlee and Sava, a couple's story

    Ashlee and Sava's story is one of partners navigating MS together, bringing us what medical textbooks can't – how the disease mixes with parenting challenges, career changes, and future planning. Listeners will hear of this young family's compounded 'complex needs' and learn that rather than dwelling on circumstances, Sava and Ashlee instead share a unique strength – sometimes through shared humour, sometimes through dividing responsibilities based on changing abilities. What makes this conversation unique is hearing both voices – Sava describing his physical decline despite "stable" MRIs, and Ashlee ultimately speaking of her own neurological condition, and evolution into what she calls "a bit of a manager," juggling medical appointments and government supports. Sava's decision to pursue HSCT treatment in Mexico adds another layer to this episode - and we wish him all the very best success! If you can support Sava's journey to Mexico for HSCT please do so through his GoFundMe page  Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    39 min
  8. 12 MAR

    Amy's Whirlwind Diagnosis: from Vertigo to MS in 48 Hours

    A young mother of two, Amy's world turned upside down—literally—when in 2023 an unexpected attack of vertigo and vomiting signalled something wasn't right. When her husband found her sitting on the shower floor in the middle of the night, they both knew something was very wrong. Two years later, with appropriate treatment and unwavering determination, Amy has embraced a second chance at life—one where MS doesn’t define her, but empowers her. Amy's powerful story is an evolution from fear to resilience which portrays hope and possibility for anyone newly diagnosed. Support the show You can join Colleen and other Australians living with MS in this podcast's Facebook group which was originally created to support those interested in HSCT and now exists to facilitate discussion on all issues relevant to MS. Multiple Sclerosis and HSCT Australia - Facebook group PS: I'd appreciate your donation to help in maintaining this podcast - if you could buy me a coffee or two please (donate $5, it's not real coffee! thank you!) - Colleen Buy Colleen a Coffee - thank you! Disclaimer: This podcast is not intended to replace professional medical advice. The views expressed in episodes of this podcast are those of the host or guest(s) and are not intended to replace professional medical advice. No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition. Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situa...

    37 min

About

Welcome to MSMS: The Many Stories of Multiple Sclerosis Here, you'll hear real stories from real people—Australians and occasionally others from around the world—sharing their experiences of life with Multiple Sclerosis (MS). The podcast began with Colleen's hope to build greater understanding of Hematopoietic Stem Cell Transplant (HSCT), by spotlighting the stories of Australians living with MS who had undergone this intense and often misunderstood procedure. What started as a focus on HSCT has since grown to include a range of conversations relevant to Australians living with MS—honest, heartfelt stories that speak to the reality of this progressive disease. By sharing our experiences, we support one another, reduce the isolation that so often comes with MS, and foster a sense of community—while also raising much-needed awareness. The first series of MSMS centres on HSCT—the decision-making process, the challenges faced, and the individual outcomes that follow. In Episode One, you’ll meet your host Colleen and her husband Kel, as they take you on their extraordinary journey to Moscow, Russia. It was there, just 5 years  married and desperate to stop the rapid progression of her MS, that Colleen underwent HSCT. What followed was an ordeal of unexpected challenges—physical, emotional, and logistical. Through it all, Colleen the patient, and Kel her steadfast champion. Their story has been shared in Australian newspapers, radio and TV—but here, in their own words, Colleen and Kel share even more of their remarkable story, behind the headlines.  ---Disclaimer:This podcast is not intended to replace professional medical advice. The views expressed in this podcast are those of the host or guest(s). No story told, view expressed or opinion voiced, written or otherwise shared in any episode of this podcast is to be taken as medical advice, including when related in an episode as a professional opinion or professional advice given.Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health or medical condition.  Content Warning: Multiple Sclerosis is an unpredictable condition and the conversations and stories in all episodes of this podcast will contain reference to MS symptoms as well as situations experienced before, during or after HSCT - some of which may be disturbing or upsetting for some.   In Australia https://beyondblue.org.au and Lifeline on 13 11 14 or https://www.lifeline.org.au are organisations which provide assistance  - do please look after yourself.