You, Me & Muscular Dystrophy

Leannes Wheel Life
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Exploring muscular dystrophy one story at a time. Sharing the lives of the wonderful people that make up the muscular dystrophy community in my unique podcast series talking to people, their families and caregivers that live with the many forms of muscular dystrophy. If you or anyone you know would like to be involved in this podcast, I'd love to hear from you. My contact details will be in the notes below and I'm also on Instagram and Facebook under Leanne's Wheel Life.

  1. You, Me & Rare Disease ep. 2 of 2

    3D AGO

    You, Me & Rare Disease ep. 2 of 2

    You, Me & Rare Disease ep. 2 of 2 acknowledging International Rare Disease Day 28th February   On You, Me & Rare Disease episode 2 of 2 we feature insights from Carly Findlay, OAM,  Clare Reilly and Leanne Watson. Their personal experiences with rare diseases of LGMD, MS, Ichthyosis, and Cancer. They emphasise the importance of awareness, community support, and the need for dedicated Rare Diseases Day to foster understanding and solidarity.  GUEST LINKS   Carly Findlay https://carlyfindlay.com.au/hire-me/ https://www.instagram.com/carlyfindlay/   Clare Reilly   https://www.wheelchairmeetswilderness.org https://www.instagram.com/clare.reilly/   Leanne Watson https://www.leanneSWHEellife.com https://www.instagram.com/leannes_wheel_life/    MUSIC Music: Without You by Declan DP License: https://license.declandp.info Free Download / Stream: https://audiolibrary.com.co/declan-dp...Music promoted by Audio Library:    • DAILY No Copyright For You – Without You b...       CHAPTERS   01:05 Introduction to Carly Findlay and Her Advocacy 06:11 Living with Ichthyosis: Challenges and Experiences 10:30 Navigating the Medical System with Rare Diseases 15:07 The Importance of Rare Diseases Day and Community Support 16:14 Introduction to Rare Diseases and MS 18:37 Understanding Multiple Sclerosis 21:18 Living with a Rare Disease 23:13 The Importance of Rare Diseases Day 23:47 Understanding Limb Girdle Muscular Dystrophy 29:22 The Impact of Living with a Rare Disease

    34 min
  2. You, Me & Rare Disease ep. 1 of 2

    4D AGO

    You, Me & Rare Disease ep. 1 of 2

    Welcome to You, Me & Rare Disease episode 1 of 2 – as a special breakout theme to You Me & Muscular Dystrophy to acknowledge rare diseases day 28th of February. We begin this fabulous series with with a discussion with from Nicole Millis, CEO of Rare Voices Australia. Kathleen Benham, Kelly Berger, Avery Roberts and Leah Alstin share personal insights on living with the rare conditions of endocrine cancer, congenital muscular dystrophy, and Frederichs Ataxia. It highlights the systemic challenges faced by rare disease patients, the importance of awareness and advocacy in rare diseases. The following 2 episodes provide great perspectives from fabulous people.  LINKS PER GUEST Nicole MillIS, CEO,  Rare Voices Australia   https://rarevoices.org.au   https://www.instagram.com/rarevoicesaustralia/   University of New South Wales - Rare Disease Education Program - https://www.unsw.edu.au/ Elhers Danlos Syndrome - https://www.ehlers-danlos.com/   Australian Government - Rare Disease Policy - https://www.health.gov.au/     Kathleen Benham, Neuroendocrine Cancer   https://neuroendocrine.org.au   Elhers Danlos Syndrome - https://www.ehlers-danlos.com/     Kelly Berger and Avery Roberts, Congenital muscular dystrophy   https://www.youtube.com/channel/UCwiodJfv-W6ZhMinq4Ft1Rw   https://www.instagram.com/thewheeltalkpodcast/   Leah Alstin, Friedrich’s Ataxia https://www.instagram.com/being_leah/       MUSIC   Music: Without You by Declan DP License: https://license.declandp.info Free Download / Stream: https://audiolibrary.com.co/declan-dp...Music promoted by Audio Library:    • DAILY No Copyright For You – Without You b...     CHAPTERS 00:00 Understanding Rare Diseases 01:11 What is a rare disease? 02:09 The Role of Rare Voices Australia 04:54 Educating medical clinicians 06:39 What is the definition of the term disease? 08:10 Rare diseases day - raising awareness of rare disease to policymakers 12:52 What is Neuroendocrine Cancer ? 14:52 Gaslighting and the need for training in the medical profession 18:16 Impact of her rare disease by Kathleen 20:33 The importance of a rare disease day from Kathleen  24:57 Congenital muscular dystrophy 27:24 Life with a rare disease by Kelly and Avery 27:53 The impacts of rare disease for Kelly and Avery 30:26 The importance of rare disease day by Kelly and Avery 33:40 Friedrichs Ataxia 38:45 The impacts of living with rare disease by Leah

    43 min
  3. Success Doesn't Need to Look Able-bodied

    FEB 15

    Success Doesn't Need to Look Able-bodied

    Avery Roberts and Kelly Berger discuss with passion, humour and thoughtful insight about how they drive, dance and thrive through life with Congenital Muscular Dystrophy.We talk about adaptive driving, making dance history, mentoring, podcasting and more.Kelly and Avery have an admirable strength and energy that you can't help but be inspired by. SHOW NOTES, LINKS & RESOURCEShttp://ladieslivingrare.com/wheel-talk-podcast https://www.facebook.com/TheWheelTalkPodcast/https://www.instagram.com/thewheeltalkpodcasthttps://www.youtube.com/@TheWheelTalkPodcast https://www.tiktok.com/@thewheeltalkpodcreators.spotify.com/pod/show/thewheeltalkpodcasthttps://podcasts.apple.com/us/podcast/wheel-talk-with-kelly-and-avery-podcast/id1836473324

    34 min
  4. Writing as a Tool For Healing: Chris Anselmo and LGMD

    JAN 31

    Writing as a Tool For Healing: Chris Anselmo and LGMD

    In this thoughtful and insightful podcast episode, we dive into the world of resilience and personal growth with the talented Chris Anselmo. Known for his articulate and vulnerable writing and public speaking on overcoming challenges, Chris shares his journey and the lessons he has learned along the way. This conversation is a must-listen for anyone looking to find strength in adversity regardless of your challenge..   Newsletter https://helloadversity.substack.com/   Instagram @hello_adversity   Useful Links https://www.jain-foundation.org   https://rarediseases.org/navigating-adversity-through-writing-an-interview-with-chris-anselmo/

    29 min
  5. Tugba Acisu and CMD

    12/13/2025

    Tugba Acisu and CMD

    Tugba is warm and bright person who shares how she broke out of her self-imposed bubble to live life fully and autonomously while living with congenital muscular dystrophy from birth.  She is now setting and achieving many of her goals, including travel, and discusses what travelling means to those of us who use a wheelchair as an extension of ourselves. This conversation is well worth listening to as Tugba imparts such wisdom as not letting health challenges dictate one's dreams and passions, encouraging others to pursue their goals and to be a voice for those facing similar challenges.   SHOW NOTES and LINKS   Tugba’s Blog MDA https://www.mda.org.au/muscular-dystrophy/posts/tugbas-blog-travelling-to-dubai-with-md   People of Determination Dubai https://legal.dubai.gov.ae/en/services/Pages/disabilities.aspx

    29 min
  6. Unlimited Potential : Joshua Ruff and DMD

    11/30/2025

    Unlimited Potential : Joshua Ruff and DMD

    In this conversation, Leanne Watson speaks with Joshua Ruff, a young man in charge of his life, creatively designing and showcasing his beautiful Henle Gardens while living with Duchenne muscular dystrophy .  Joshua generously shares his journey from diagnosis at age five, his life changing cardiac arrest and the joy and pleasure he derives from his immersion in nature. Joshua has a deep gratitude for his large and supportive family and community. This conversation is full of hopefulness and a humble energy that is truly heartening NOTES AND RESOURCES   https://www.abc.net.au/gardening/how-to/my-garden-path-joshua-ruff/105382674   https://www.instagram.com/henlegardens/   https://www.instagram.com/joshuaruff19/    Chapters   00:00 Introduction to Joshua Ruff and His Journey 02:47 Living with Duchenne Muscular Dystrophy 05:55 Family Support and Community Connections 08:52 Life Changes and Personal Growth 11:55 Gardening as a Source of Joy 14:38 Designing Henley Gardens 17:32 Public Engagement and Community Feedback 20:40 Pivotal Moments and Life Perspectives 23:39 Finding Hope and Joy 26:31 Travel and Accessibility 29:14 Advice for the Newly Diagnosed

    30 min
  7. Grace and Creativity: Tayla and CMS

    11/16/2025

    Grace and Creativity: Tayla and CMS

    Creative and eloquent Tayla Richardson has Congenital Myasthenic Syndrome. A rare neuro muscular disorder that presents quite similarly to many muscular dystrophies and therefore is worth sharing on You, Me & Muscular Dystrophy. Having hundreds of periods of paralysis from her teenage years Tayla shares her unique experiences coping with a new diagnosis, working with the waves of grief, setting boundaries and exploring and honing her creativity. Tayla has an inspirational attitude and great advice to others who may be newly diagnosed or caring for someone in that situation. NOTES AND RESOURCES  MDA – Muscular Dystrophy Australia - https://www.mda.org.au  A Slight Change Of Plans podcast.    https://www.pushkin.fm/podcasts/a-slight-change-of-plans  I Think Therefore I slam Podcast - https://podcasts.apple.com/au/podcast/i-think-therefore-i-slam/id1747139808  The Growing Space.  https://www.thegrowingspace.com.au/  Rare Voices Australia   https://rarevoices.org.au    MORE OF TAYLA HERE  ‘Dandelion Bouquet’ Short film: https://www.focusonability.com.au/FOA/films/3771.html  ‘Amorphous’ Short film: https://vimeo.com/1078856803 Emerging Writer’s Festival Panel: emergingwritersfestival.org.au/event/where-do-you-get-your-ideas/ Sample of spoken word Poetry: https://www.youtube.com/shorts/XmC0YtnRb7w Russh Magazine (poetry) as finalist for Literary Showcase: https://www.russh.com/wp-content/uploads/2024/04/The_string_that_goes_unseen__excerpt_.pdf Article in HireUP: https://hireup.com.au/news/in-the-midst-of-a-pandemic-time-is-precious-for-those/?fbclid=PAZXh0bgNhZW0CMTEAAad6iCIP3gxeHPiEzlcZ4E8ZQtuaqReuDt6fcBZQz_5o1rGFaiRvFKM-Auj3VA_aem_i-pdThP0WQ2w7N2QmEB42g   As a guest on podcasts ‘ListenABLE’ with Dylan Alcott and ‘I think Therefore I Slam’.  https://www.youtube.com/watch?v=WwnICEj1ObU&feature=youtu.be https://podcasts.apple.com/au/podcast/patreon-preview-tayla-richardson-ambiguous-loss-unequivocal/id1747139808?i=1000716533890

    36 min
  8. The Road Less Stumbled: Paul Bugeja and FSHD

    11/01/2025

    The Road Less Stumbled: Paul Bugeja and FSHD

    Diagnosed at age 35 vibrant Paul Bugeja shares his personal journey with Facioscapulohumeral Muscular Dystrophy (FSHD).  In this conversation with humour and enthusiasm Paul reflects on the signs of FSHD that were present in his childhood, the importance of exercise, and how he views his condition as an opportunity for growth rather than an obstacle.  Paul emphasises the significance of embracing uncertainty, finding joy in ‘collecting souls’, his involvement in advocacy organisations while sharing his journey of writing a book about his experiences with FSHD.  SHOW NOTES FSHD Global https://fshdglobal.org Muscular Dystrophy Australia  https://www.mda.org.au Muscular Dystrophy Queensland  https://mdqld.org.au Muscular Dystrophy Foundation Australia https://mdaustralia.org.au

    39 min
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About

Exploring muscular dystrophy one story at a time. Sharing the lives of the wonderful people that make up the muscular dystrophy community in my unique podcast series talking to people, their families and caregivers that live with the many forms of muscular dystrophy. If you or anyone you know would like to be involved in this podcast, I'd love to hear from you. My contact details will be in the notes below and I'm also on Instagram and Facebook under Leanne's Wheel Life.

Information

  • Creator
    Leannes Wheel Life
  • Years Active
    2025 - 2026
  • Episodes
    17
  • Rating
    Clean
  • Copyright
    © Leannes Wheel Life
  • Show Website
    You, Me & Muscular Dystrophy