MS Understood

Crowd 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

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=JUUbXA4yeLATim Ferguson MS Understood - https://open.spotify.com/episode/3lToMZsyoxJHncL0hRds4T?si=63f3e7a83c694287Hollywoodland 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=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

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=e4fe6d6ffce94ad8Instagram - https://www.instagram.com/mswarriorhayley?igsh=YXNqbDI5eG1jcXA5Grief 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=85025db32a964be4Wheelchair Meets Wilderness - https://www.wheelchairmeetswilderness.org/

When we recorded this interview Reena was in hospital in the process of receiving HSCT treatment for multiple sclerosis. After being diagnosed at 17, Reena was told for years that her MS was mild, even while having yearly relapses, and not to worry about taking medication to help stop progression of her disease. During this episode Reena talks through the process of getting approved for HSCT in England. Reena talks about what it’s like to be going through the HSCT process. And we both talk about how bloody hard it is to live with multiple sclerosis. Deciding on HSCT as a treatment with Victoria

This chat with Brooke was full of so many lightbulb moments for me. We talk about a diagnosis leading to the uncovering of co exisiting conditions. I was activated when Brooke talked about using a wheelchair instead of pushing through. This conversation was a catalyst for my decision to start using a wheelchair. Brooke talks about using medicinal cannabis, and there’s some links to other episodes about MC in the show notes if you’re interested in others experiences. As mentioned in a lot of episodes we talk about the incredible level self awareness and how Brooke had to really take time to figure out who they were after the MS diagnosis. Unmasking is the term Brooke used and I think that is so accurate. Medicinal Cannabis and Multiple Sclerosis with Marianna Gaul Medical Marijuana and Multiple Sclerosis with Matthew “Beardo’ Herakovich Brooke on Instagram

Today on MS Understood we chat with Chris. We talked about the skewed view of disease in the world but particularly when working as a chronic care nurse working with people who are quite debilitated from their multiple sclerosis diagnosis. Living with MS and working in that space is curious and a constant reminder to Chris that is really is a spectrum disease. We talk about the guilt that arises in our relationships of not being able to do what we once did before diagnosis. We also talk about toxic positivity and being in denial after a diagnosis and the importance of finding a good psychologist or therapist after a diagnosis.

On today’s episode of MS understood I chat with Victoria, an English expat living in Hong Kong. Victoria talks about her journey to deciding to have HSCT, how her symptoms show up now and how before she was diagnosed, as with so many of us, her experiences and awareness was only with people who lived with physical symptoms of MS. Victoria’s mum also has MS, so she has grown up with the disease but at the time for interviewing she hadn’t told her mum. Victoria shares with us why she decided to start the HSCT process, what really impacted her decision and why she started to fundraise for her treatment. Find Victoria on Instagram https://instagram.com/hot_m.s?igshid=YmMyMTA2M2Y= Support’s Victorias Go Fund Me https://www.gofundme.com/f/victorias-race-for-stem-cell-hsct4vic

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. 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

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

MS Understood Listener Survey Affirm. Affirmation Cards. A dose of daily inspiration for life with a chronic illness Today on the MS Understood Podcast we chat with Ashleigh Rose, from The A Rose Collective. Ashleigh is a ray of light who shares her MS story on Instagram and her website pretty candidly. Today she shares her difficult diagnosis story. I think story is really important to share how difficult t can be because the initial diagnosis can be such an overwhelming experience and how it's worth finding the team that works for you. Ashleigh chats about how her faith has helped her to accept her diagnosis. We talk about why she started sharing her MS life online, and finding a community of people who understand. Thank you so much for listening to today's episode of MS Understood. You can find Ashleigh on Instagram @ARose, you can find me @Clare.Reilly. The best thing you can do to support this podcast is click follow on Spotify, Subscribe on your other podcast listening platforms and leave a review, this helps others find the podcast. I'm always looking for new guests for the MS Understood podcast, if this is you or someone you know, please send me a message via either of my instagram accounts. In an effort to make sure to have representation I'd love to hear from any members of the lGBTQI+ community, our Black and BIPOC community or any men willing to share their stories of living with Multiple Sclerosis. Thanks again for listening and please share this episode with someone you think it might help.

MS Understood Listener Survey Affirm. Affirmation Cards. A dose of daily inspiration for life with a chronic illness Today on MS Understood we chat with public speaker, resilience coach, artist and medical advocate Justine Martin. We talk about how her life has done a complete 180 since diagnosis, we speak about how art has changed her life, and so much more. I seriously loved her answer to my "what's been the best thing to happen to you because of your MS?', so make sure to stick around to the end of the episode to hear that. Thank you so much for listening to today's episode of MS Understood. You can find Justine on Facebook at JUZT art Justine Martin Artist, and you can find her Australian MS Support Facebook Group at Supporting Each Other With MS in Australia. You can find me on Instagram @Clare.Reilly The best thing you can do to support this podcast is click follow on Spotify, Subscribe on your other podcast listening platforms and leave a review, this helps others find the podcast. I'm always looking for new guests for the MS Understood podcast, if this is you or someone you know, please send me a message via either of my instagram accounts. In an effort to make sure to have representation I'd love to hear from any members of the lGBTQI+ community, our Black and BIPOC community or any men willing to share their stories of living with Multiple Sclerosis. Thanks again for listening and please share this episode with someone you think it might help

MS Understood Listener Survey Affirm. Affirmation Cards. A dose of daily inspiration for life with a chronic illness Today on the MS Understood Podcast we chat with comedian, actor, writer, screen writing teacher and MS advocate Tim Ferguson. He shares about using MS as your gimmick, why he accepted of his MS, how he gets by day to day, why he decided to disclose his diagnosis to the world, why people should employ with with disabilities and so much more. Links mentioned: Tim Ferguson's Book Carry A Big Stick Ep 5. Nina Crumpton Thank you so much for listening to today's episode of MS Understood. You can find Tim on Instagram at @therealtimferguson. You can find me @Clare.Reilly. The best thing you can do to support this podcast is click follow on Spotify, Subscribe on your other podcast listening platforms, and share this episode on your Instagram, don't forget to tag @MSUnderstoodPodcast. Thanks again for listening and please share this episode with someone you think it might help.

MS Understood Listener Survey Affirm. Affirmation Cards. A dose of daily inspiration for life with a chronic illness Today on the MS Understood Podcast we chat with Ardra Shephard who shares her MS story through her blog and Instagram Tripping On Air. Today Ardra talks about how bladder and bowl issues effect her, and how they shouldn't be so stigmatised, about why she shares her life so publicly on her blog and Instagram account, about ableism and expectations around love and marriage and the power of media in changing perceptions of people living with disabilities well as so much more. Thank you so much for listening to today's episode of MS Understood. You can find Ardra at MS_Trippingonair on Instagram ad be sure to check out her blog Tripping On Air. You can find me @Clare.Reilly or @MSUnderstood Podcast. The best thing you can do to support this podcast is click follow on Spotify, Subscribe on you other podcast listening platforms, and share this episode on you Instagram, don't forget to tag MSUnderstoodPodcast. Thanks again for listening and please share this episode with someone you think might help. 14 Valentine's Day Questions about True Love and MS Tripping on Air: My Trip Through Life with MS Video | WebMD

MS Understood Listener Survey Affirm. Affirmation Cards. A dose of daily inspiration for life with a chronic illness Today on the MS Understood Podcast we chat with interviewer, teacher, writer and advocate Astrid Edwards. We talked about her chapter in the newly published Growing Up Disabled in Australia. She shares talks about trusting yourself when you know something just isn't right in your body, she offers suggestions about how we can make studying more comfortable for students living with chronic illnesses. Astrid shares her incredible list of MS related symptoms and how she now refuses to feel shame in relation to her MS. We had such a full chat where we covered so many topics. I'm absolutely sure there'll be something for everyone. Anonymous Was A Women - Fortitude Pain and Prejudice - Gabrielle Jackson Show Me Where It Hurts - Kylie Maslen Growing Up Disabled in Australia - Carly Findlay Thank you so much for listening to today's episode of MS Understood. I hope you enjoyed this chat as much as I did. You can find Astrid on Instagram @_astridedwards_. Don't forget to check out growing Up Disabled in Australia. You can find me @Clare.Reilly or @MSUnderstoodPodcast. The best thing you can do to support this podcast is click follow on Spotify, Subscribe on your other podcast listening platforms and leave a review, this helps others find the podcast. I'm always looking for new guests for the MS Understood podcast, if this is you or someone you know, please send me a message via either of my instagram accounts. In an effort to make sure to have representation I'd love to hear from any members of the lGBTQI+ community, our Black and BIPOC community or any men willing to share their stories of living with Multiple Sclerosis. Thanks again for listening and please share this episode with someone you think it might help.

Today on MS understood we chat with Carol Cooke. Carol like so many of us had a devastating diagnosis story. Through her story it is evident that mindset really is everything. After Carol was diagnosed she had to stop working and she created a whole new life herself. It's really true for Carol that there is a before and after her MS diagnosis. After her diagnosis she created a huge fundraiser that fund the MS Go For Gold scholarship, she became a Paralympian, she's written two books and is an incredible advocate for multiple sclerosis, What I love most about this conversation is the transformation Carol had at her diagnosis and how we can all live a second very fulfilling life after a diagnosis. Carol Cooke Finding Your Inner Gold The Force Within Thank you so much for listening to today's episode of MS Understood. You can find me on Instagram @Clare.Reilly. The best thing you can do to support this podcast is click follow on Spotify, Subscribe on your other podcast listening platforms and leave a rating, this helps others find the podcast.