Podcast
MS Understood
Hosted by Clare Reilly · EN
We all know that MS is a misunderstood disease that shows up differently for each of us. Each week an episode will be released that'll share the highs and lows of this unpredictable disease. My hope is that these episodes will shed some light for those who are newly diagnosed and those of us who have been living with it for years. Each week we will chat with someone who has been effected by Multiple Sclerosis, whether that be someone who lives with it, a family member, spouse, nurse or friend.
10episodes
Episodes
Newest firstAll episodes
Love, Adventure & Life with MS with Bree-Arne Manley
Aug 3100:37:58Tap to summarizeCrowd funding - https://www.gofundme.com/f/raise-money-for-a-disability-beach-access-wheel-chairBook- Hope: Fighting Multiple Sclerosis by Bree-Arne Manley Bree-Arne Instagram
Transcribe →Paddy Macrae: Why Irreverent Put Authentic Disability Representation on Screen
Aug 1700:37:46Tap to summarizeIn this episode of MS Understood, I chat with Paddy Macrae, writer and creator of the Netflix series Irreverent. We dive into why he made the powerful choice to include a character living with multiple sclerosis in the show — and how her story challenges the usual way disability is portrayed on screen.Paddy shares his thoughts on the importance of diverse casting, what it means to represent a “true Australia,” and how thoughtful storytelling can shift perceptions in all the best ways.Whether you live with MS, work in media, or just love great TV that reflects real life, this episode is one you won’t want to miss.And if you haven’t already watched Irreverent, add it to your list — it’s full of heart, humour, and genuine representation.
Transcribe →From Set Life to Self-Care: Actor & Filmmaker Cassidy on Living with MS
Aug 300:40:56Tap to summarizeIn this episode, I chat with Cassidy – actor, filmmaker, and content creator – and honestly, this convo was so worth the wait.Cassidy shares how a sudden bout of optic neuritis turned everything upside down, and how that moment ended up being a major turning point. We talk about the shift to becoming a more positive person, discovering meditation, and learning to really take charge of life.We also dig into the shame that can come with an MS diagnosis, the power of doing what you love, learning to say no, and navigating dating with MS.Daisy - https://www.youtube.com/watch?v=JUUbXA4yeLATim Ferguson MS Understood - https://open.spotify.com/episode/3lToMZsyoxJHncL0hRds4T?si=63f3e7a83c694287Hollywoodland Photos - https://www.instagram.com/hollywoodlandphotos/
Transcribe →Cate’s Audacious Life: Bikes, Business & Big Goals
Jul 2000:40:37Tap to summarizeIn this episode, I chat with the incredible Cate. From a wild MS diagnosis to rediscovering her love of cycling, Cate has gone on to ride across Vietnam, walk the Camino de Santiago, and now she’s planning to cycle around Australia.We talk about setting big, audacious goals, how movement has helped her reconnect with her body, and how she’s now using her lived experience to support other business owners living with chronic illness.Cate’s got huge dreams, a huge heart, and a seriously contagious energy. Links: FB page - https://www.facebook.com/profile.php?id=61558880820038Fundraising - https://www.doitforms.org.au/fundraisers/categreen/cycling-for-certainty-Crowd funding link - https://www.gofundme.com/f/d8a3fx-help-me-mind-my-own-business?attribution_id=sl:065b89f8-ca77-409d-9362-ee1b58594267&utm_campaign=natman_sharesheet_dash&utm_medium=customer&utm_source=copy_link
Transcribe →Two Years After HSCT: Hayley Shares Her MS Story
Jul 600:31:13Tap to summarizeIn this episode, I catch up with Hayley, who you might remember from 2022, we spoke just two weeks before she was about to have HSCT. She’s back to share what the whole experience was really like, how she got through it, and why she’s so thankful she went ahead with it.We also chat about the mindset shift that comes with HSCT, how it’s not a cure (and why that’s hard to explain to others), and the huge impact of finding a great therapist. A really honest, down-to-earth convo about treatment, mental health, and living with MS.HSCT trials in Australia with Hayley - https://open.spotify.com/episode/5p02VG78pmWC7Enr8R4WnG?si=e4fe6d6ffce94ad8Instagram - https://www.instagram.com/mswarriorhayley?igsh=YXNqbDI5eG1jcXA5Grief and Multiple Sclerosis with Jo Betz - https://open.spotify.com/episode/3qv85AlHQkeWrSlOUMEOfI?si=3f8697b248914c0a
Transcribe →Where I have been and what’s happening next with host Clare Reilly
Jun 2200:27:19Tap to summarizeIt's been almost 3 years since I last released an episode of a MS Understood. In this episode at my dad, Frank interviews me to share what I've been up to and what's happening next. Things mentioned in this episode:Sex and multiple sclerosis with sexologist Chantelle Otten - https://open.spotify.com/episode/13bTpXdbU1TSiDPOlw5mbb?si=85025db32a964be4Wheelchair Meets Wilderness - https://www.wheelchairmeetswilderness.org/
Transcribe →
Soulful Simplicity and Multiple Sclerosis with Courtney Carver
Oct 2, 202200:39:22Tap to summarizeAfter working in a high powered, incredibly busy job Courtney noticed she had developed vertigo and was struggling to walk in a straight line. After her diagnosis Courtney focused on simplifying and being less stressed, one habit at s time. The thread of simple and stress free are strong throughout Courtneys life. We talk about the line in the sand, the before and after that comes from a chronic illness diagnosis and how it often feels self indulgent to really take time to care for ourselves with out a life changing diagnosis. Courtney’s beautiful book, Soulful Simplicity inspired me to create more physical space in my home to create more emotional and mental space. There’s so many great tidbits throughout this interview, I really hope you find something to take from this episode. Find Courtney on Instagram Find Courtney’s work here Find Courtney's podcast here
Transcribe →A Conversation About Multiple Sclerosis With My Family with Steven
Sep 25, 202200:28:01Tap to summarizeToday on MS understood we chat with Steven. Steven shared a story that is all too familiar, being diagnosed as a young man at 16 and how confusing this can be in the formative years, when being a teenager is hard enough on it own. We talked about what am amazing financial support the NDIS is, and Steven not only receives the support but works for the NDIS and is so grateful to be able to give back. Steven shared with us about the book he wrote for his children, and now it’s a children’s book that can explain this crazy neurological disease. His book is called A Conversation About Multiple Sclerosis With My Family. Conversations About Multiple Sclerosis with My Family by Steven Koutsodontis
Transcribe →HSCT trials in Australia with Hayley
Sep 18, 202200:27:02Tap to summarizeHayley was diagnosed quite quickly, and after having two failed treatments she has been recommended to join the stem cell treatment at St Vincents hospital in Sydney. We talk about the eligibility criteria, why it’s still a trial in Australia, and why it’s such a difficult decision to make. Hayley is going to do a video journal of her stem cell process. I found this such an interesting chat about a different method of treatment available for MS in Australia. Follow Hayley's journey on Instagram Other chats about HSCT: Deciding on HSCT treatment with Victoria What it’s like to have HSCT as a treatment with Shereena
Transcribe →Living with completely invisible MS symptoms with Sarah from Vitality Law
Sep 11, 202200:34:17Tap to summarizeThis episode of MS Understood is sponsored by the Reassess Your MS campaign by Novartis Australia, helping people with MS to monitor their symptom changes and have informed discussions with their healthcare teams. Reassess Your MS Campaign Sarah shares with us about her diagnosis battling with a newborn, an unprecedented pandemic and a new business. Sarah talks about how her career in the law doesn’t always fit with having MS. Sarah talks about being able to define the difference between ‘new family’ tiredness and MS fatigue. Living with almost completely invisible symptoms is a battle in working in the legal profession, from finishing work earlier that traditional legal profession hours, not wearing high heels and working through cognitive issues. Sarah talks about how beneficial is has been to opening her own business and managing her MS. There’s a lot of gems in this episode and I really hope at least one of them lands for you. Find Sarah on Instagram Multiple Sclerosis and Discrimination in the workplace with Catherine Brooks
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