Living Awesomely with MND: Practical, Person-Centred Strategies in Integrated Care  from a Lived Experience Perspective

Background: Too often, ALS/MND is seen only through the lens of decline. But what if care could be reframed-not as preparing someone to die, but empowering them to live using strategies focusing on integrating allied health, care team and personal resilience and mindset tools?

In this presentation, Leanne Sklavenitis-former fitness professional, international speaker, and ALS/MND advocate-shares her lived experience of navigating life with ALS/MND through innovative, coordinated, and compassionate allied health care. Diagnosed in 2017, Leanne has since lost the ability to walk, move her arms, and speak. Yet she continues to choose purpose over prognosis, working closely with her allied health team and her community to live fully and meaningfully.

 

Approach: Leanne will highlight practical, person-centred examples showing how integrative care supports have maintained her independence, dignity, and hope. Drawing on more than eight years of lived experience, she will share creative solutions to demonstrate the power of flexible, coordinated care.

She will also reflect on the role of mindset, routine, and goal-setting in fostering resilience and purpose when physical ability is diminished. With warmth and honesty, Leanne challenges assumptions and reminds us that when integrative care is personalised and compassionate, it doesn’t just treat symptoms-it transforms lives.

 

Results: Throughout Leanne’s eight years of lived experience she has coordinated her own care team of fifteen carers, gathered a full allied health team, building her own working community, whilst continually improving her own resilience and mindset to live a full life with purpose.

This combination of support includes

 

People as partners in health and care:

Leanne encourages health practitioners, carers, and family to work together toward her common goals. She has learnt that there is an overlap in care and it’s important for practitioners to work together and share thoughts and ideas for her rehabilitation.

Leanne has taken control of her own care, making all decisions on how she wants to live life.

She has created tools for professionals and carers working together which highlights overlapping areas for collaboration, how each professional’s role relates to goals and a shared timeline and progress tracker.

 

Resilient communities and new alliances:

Leanne is actively involved in numerous MND committees and research which gives her a sense of purpose and keeps her connected within the community

This presentation shows how Leanne has created a unique and powerful integrative community encompassing researchers, allied health, and carers alike.

 

Implications: By sharing her experiences over the last 8 years of living with MND, Leanne shares many lessons and has proven how to live an awesome life despite her enormous challenges on a daily basis. Many inspirational take home strategies will be shared for the benefit of all who attend.