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
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 NOTES
Accessible Accommodation
https://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.
LINKS
https://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_duchenne
Facebook: facebook.com/harrisonandduchenne
TikTok: @harrisonandduchenne
Other links:
Carers QLD. https://carersqld.com.au
Muscular 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
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.
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.
