You, Me & Muscular Dystrophy

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 Findlayhttps://carlyfindlay.com.au/hire-me/https://www.instagram.com/carlyfindlay/ Clare Reilly https://www.wheelchairmeetswilderness.orghttps://www.instagram.com/clare.reilly/ Leanne Watsonhttps://www.leanneSWHEellife.comhttps://www.instagram.com/leannes_wheel_life/  MUSICMusic: 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 Advocacy06:11 Living with Ichthyosis: Challenges and Experiences10:30 Navigating the Medical System with Rare Diseases15:07 The Importance of Rare Diseases Day and Community Support16:14 Introduction to Rare Diseases and MS18:37 Understanding Multiple Sclerosis21:18 Living with a Rare Disease23:13 The Importance of Rare Diseases Day23:47 Understanding Limb Girdle Muscular Dystrophy29:22 The Impact of Living with a Rare Disease

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 Robertsand 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 GUESTNicole 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 Ataxiahttps://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...   CHAPTERS00:00 Understanding Rare Diseases01:11 What is a rare disease?02:09 The Role of Rare Voices Australia04:54 Educating medical clinicians06:39 What is the definition of the term disease?08:10 Rare diseases day - raising awareness of rare disease to policymakers12:52 What is Neuroendocrine Cancer ?14:52 Gaslighting and the need for training in the medical profession18:16 Impact of her rare disease by Kathleen20:33 The importance of a rare disease day from Kathleen 24:57 Congenital muscular dystrophy27:24 Life with a rare disease by Kelly and Avery27:53 The impacts of rare disease for Kelly and Avery30:26 The importance of rare disease day by Kelly and Avery33:40 Friedrichs Ataxia38:45 The impacts of living with rare disease by Leah 

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

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.. Newsletterhttps://helloadversity.substack.com/ Instagram@hello_adversity Useful Linkshttps://www.jain-foundation.org https://rarediseases.org/navigating-adversity-through-writing-an-interview-with-chris-anselmo/  

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 MDAhttps://www.mda.org.au/muscular-dystrophy/posts/tugbas-blog-travelling-to-dubai-with-md People of Determination Dubaihttps://legal.dubai.gov.ae/en/services/Pages/disabilities.aspx

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 hearteningNOTES 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 Journey02:47 Living with Duchenne Muscular Dystrophy05:55 Family Support and Community Connections08:52 Life Changes and Personal Growth11:55 Gardening as a Source of Joy14:38 Designing Henley Gardens17:32 Public Engagement and Community Feedback20:40 Pivotal Moments and Life Perspectives23:39 Finding Hope and Joy26:31 Travel and Accessibility29:14 Advice for the Newly Diagnosed 

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/1078856803Emerging Writer’s Festival Panel: emergingwritersfestival.org.au/event/where-do-you-get-your-ideas/Sample of spoken word Poetry: https://www.youtube.com/shorts/XmC0YtnRb7wRussh Magazine (poetry) as finalist for Literary Showcase: https://www.russh.com/wp-content/uploads/2024/04/The_string_that_goes_unseen__excerpt_.pdfArticle 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.behttps://podcasts.apple.com/au/podcast/patreon-preview-tayla-richardson-ambiguous-loss-unequivocal/id1747139808?i=1000716533890 

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 NOTESFSHD Global https://fshdglobal.orgMuscular Dystrophy Australia  https://www.mda.org.auMuscular Dystrophy Queensland  https://mdqld.org.auMuscular Dystrophy Foundation Australia https://mdaustralia.org.au  

In this conversation, Leanne speaks with the delightful Shae Mankey about her experiences living with Facioscapulohumeral Muscular Dystrophy (FSHD). They discuss Shae’s career transition to Accessible Accommodation, the impact of childhood disability on her dreams and future aspirations. Shae speaks about the decision not to have children and her love for her husband, family and dog, ending with great advice for those newly diagnosed with muscular dystrophy. SHOW NOTESAccessible Accommodationhttps://www.accessibleaccommodation.com/ The Accessible Group – Facebook https://www.facebook.com/groups/accessiblegroup   

In this conversation, Leanne and her husband Gary Watson discuss the profound impact of Leanne's neurological muscle wasting disease (LGMD) on their marriage and lives. They explore themes of resilience, adaptation, and the importance of communication in navigating health challenges. Gary shares insights on the unpredictability of life, the lessons learned from their journey, and the hope he finds in the goodness of people. They also touch on the significance of self-care for caregivers and the role of technology in their daily lives. 

In this episode of 'You, Me and Muscular Dystrophy', host Leanne Watson speaks with Kate Johnson, a mother navigating the challenges of raising a child with Limb Girdle Muscular Dystrophy (LGMD). They discuss the journey of diagnosis, the emotional and practical challenges of parenting a child with a degenerative condition, and the importance of community support. Kate shares insights on family dynamics, sibling relationships, and the need for self-care as a caregiver. The conversation highlights the resilience of children and the hope that can be found in seeing your child happily surrounded by inclusive peers, as well as the importance of advocacy in navigating the healthcare system.  

In this conversation, Cerys Davage ( YouTube@unbalanced with Cerys Davage) shares her personal journey with Limb Girdle Muscular Dystrophy (LGMD), and what LGMD means to her beyond the physical. How her love of teaching, music and performance has shaped and enhanced the community and supports she has around her. Cerys exudes warmth, humility and wisdom in this enlightening chat with Leanne.Show Notes & LinksUnbalanced Podcast Instagram. https://www.instagram.com/unbalancedpodcast/Daniel Ferguson LGMD foundation. https://dffoundation.com.au/LGMD awareness foundation. https://www.lgmd-info.orgCure lgmd2I Foundation. https://curelgmd2i.com

 I very much enjoy Kalvin Hopper ‘s articulate and unassuming discussion of life for a sporty man in his mid 20s with facioscapulohumeral dystrophy (FSHD). He speaks candidly about acceptance, community support, and finding joy in activities like tennis and creative outlets. Kalvin also reflects on pivotal moments in his life, including his advocacy work through YouTube, and offers advice for those newly diagnosed with muscular dystrophy.LINKShttps://www.youtube.com/@dudeability 

In this conversation, Leanne Watson speaks with Linda Williams, a mother and primary caregiver to her son Harrison, who has Duchenne muscular dystrophy.They discuss the challenges and realities of living with DMD, including the impact on family life, the importance of advocacy, and the need for better accessibility and support systems. Linda shares her journey of navigating the healthcare system, the housing crisis made worse by lack of inclusively designed homes, and the emotional toll of caregiving, while also highlighting the joy and hope that can be found in family and community support.Links to resources. Harrison's pages are:  Instagram: @harrison_and_duchenneFacebook: facebook.com/harrisonandduchenneTikTok: @harrisonandduchenne                          Other links:Carers QLD.  https://carersqld.com.auMuscular dystrophy Queensland    https://mdqld.org.au Facebook 'Duchenne Australia - Support Group' https://www.facebook.com/groups/820692598018113/

How does a music loving, car enthusiast become a published author and an active disability advocate ? Brad Miller shares his aspirations, inspirations and wonderful advocacy work and what it means to live with Becker muscular dystrophy from a young age. We covered many topics such as the importance of creative outlets and community, bullying, anxiety, car racing, music and much more in this 10 question chat. I really enjoyed my time with Brad as I hope you do as well.#bmd #musculardystrophy #beckermusculardystrophy

Welcome to You, Me and Muscular Dystrophy—a series where we ask 10 questions to people impacted by the many forms of muscular dystrophy, uncovering how our diagnoses and journeys can be both different and yet deeply connected.In this very first episode, I hand the mic to my daughter Amy, who turns the tables and interviews me. She kicks things off by asking: “Who are you, and what’s your connection to muscular dystrophy?”I share my story as Leanne Watson—a mother, grandmother, and advocate living with adult-onset limb girdle muscular dystrophy. Over the past 20 years, my diagnosis has reshaped my life and led me into disability advocacy through blogging, podcasting, and even public radio broadcasting in Geelong. Amy reflects on my journey as a now freshly-turned 60-year-old, noting both the life I lived before disability and the challenges and redefinitions that came after.Together, we talk candidly about life before and after diagnosis, how my younger self imagined adulthood, the privilege of experiencing many milestones without barriers, and the profound changes disability now brings to daily life. With honesty, humour, and love, we set the stage for future conversations with others in the MD community.

In You, Me and Muscular Dystrophy I will ask the same 10 questions to various people that have some form of muscular dystrophy or are caregivers of someone with muscular dystrophy or otherwise move in the muscular dystrophy world. Together we can provide a sense of community and support for people in all the stages of the dystrophy journey and for others to understand how they can support us. Also providing an understanding to those who are interested in how we can and do embrace joy, and live with hope and curiosity.  This is a show about real people living their best life while experiencing progressive physical deterioration with a unique and rare disability . I hope you enjoy it and would love your feedback. My contact details will be in the notes below and I'm also on YouTube, TikTok, Instagram and Facebook under Leanne's Wheel Life.