My name is Anthea and I’m a full-time carer for my husband Jason who was diagnosed with motor neurone disease eight years ago.
MND is a progressive neurological condition that slowly takes away his ability to move speak and eventually breathe.
Being a carer is both rewarding and exhausting, and one of the biggest lessons I’ve learnt is this ‘no’ is a full sentence. You don’t need to justify it, explain it or feel guilty. Protecting your energy means you can keep showing up for the person you love.
This carers week, I want to acknowledge all the unpaid carers out there. You are not alone and what you do matters.
As a carer for my husband, who has lived with motor neurone disease for 8 years, my advocacy is driven by both lived experience and a deep commitment to improving support for families like mine.
Every day, I see the challenges that MND brings, not only to the person diagnosed but also to those who love and care for them.
Sharing our story during Carers Week helps raise awareness of the invisible load carers carry and highlights the urgent need for greater understanding, resources, and coordinated care.
Through my advocacy, I’ve worked with MND Australia’s lived experience network, MND NSW, FightMND, the media, as well as politicians to amplify the voices of carers and people living with MND. I contribute to research, policy discussions, and community forums to ensure that decision-makers and health professionals hear firsthand perspectives.
By bringing together personal experience and professional skills, I strive to help shape solutions that make care more compassionate, responsive, and effective.
Carers Week is an important opportunity to remind the community that carers are not just providing practical support, they are advocates, companions, and champions for those they love.
My hope is that by sharing my journey, others feel less alone, and that together we can drive meaningful change for all carers across Australia.