MS Understood

Crowd funding - https://www.gofundme.com/f/raise-money-for-a-disability-beach-access-wheel-chair

Book- Hope: Fighting Multiple Sclerosis by Bree-Arne Manley

Bree-Arne Instagram

In 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.

In 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=JUUbXA4yeLA

Tim Ferguson MS Understood - https://open.spotify.com/episode/3lToMZsyoxJHncL0hRds4T?si=63f3e7a83c694287

Hollywoodland Photos - https://www.instagram.com/hollywoodlandphotos/

In 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=61558880820038

Fundraising - 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

In 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=e4fe6d6ffce94ad8

Instagram - https://www.instagram.com/mswarriorhayley?igsh=YXNqbDI5eG1jcXA5

Grief and Multiple Sclerosis with Jo Betz - https://open.spotify.com/episode/3qv85AlHQkeWrSlOUMEOfI?si=3f8697b248914c0a

It'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=85025db32a964be4

Wheelchair Meets Wilderness - https://www.wheelchairmeetswilderness.org/

After 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.

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

Today 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

Hayley 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

This 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