Advertise on podcast: Let's Talk MND

In this episode, Peta Hardy, an Occupational Therapist who specialises in MND, and shares insights on how occupational therapy supports individuals with MND. She discusses assistive technology, home safety, and the importance of a multidisciplinary team to improve quality of life.

In this mind blowing episode, Dr. Amanda Wright and Dr. Lyndal Henden discuss their recent research findings that MND has a 7 times higher prevalence in areas of in Western NSW, compared with the rest of the world! We explore incidence rates, genetics and environmental factors, and the challenges of rural healthcare.  They share insights into ongoing efforts to improve data collection, diagnosis, and care for rural patients.

What happens when you live with MND far longer than expected? In this special episode, Phil Camden, John Hanley, Matt Stickland and Peter Chambers come together to share their experiences of living with MND over many years. They talk openly about what keeps them going, what they’ve learned along the way and the different ways they’ve adapted to the challenges MND has brought into their lives. We explore the importance of mindset, staying connected, finding support and making the most of each day. There’s honesty, humour and plenty of insight as they reflect on the choices, routines and sources of strength that have helped them continue moving forward. It’s an uplifting and thought-provoking conversation about hope, resilience and longevity — and about living, not just surviving, with MND.

Adam Dowling is living with SOD1 MND, a rare genetic form of motor neurone disease. In this episode, Adam shares what it means to discover your MND has a genetic cause — not just for you, but for your family and future generations. He talks about genetic testing and counselling, navigating conversations with his four children, and his treatment with Tofersen. Community has also become an important part of Adam’s journey. Connecting with others affected by MND has given him support, understanding and a desire to use his own experience to help others. “Connecting with others in the MND community has been invaluable. I want to share my journey and help raise awareness about the disease.” Adam’s story is about genetics, family, treatment, community and hope — and choosing to keep living life fully.

In this episode, I’m joined by Sarah Shuttlewood, who shares her family’s journey following her father Peter’s diagnosis with MND. Sarah speaks openly about navigating MND from a daughter’s perspective — the shock of diagnosis, supporting her children through their grandfather’s illness, and the challenges of living hours away from her parents. It’s an honest conversation about changing family roles, respecting independence, and finding the balance between wanting to help and allowing someone living with MND to remain in control of their own life.

Professor Tom Oxley In this episode, I’m joined by Professor Tom Oxley, CEO and co-founder of Synchron, a company pioneering brain-computer interface technology. We discuss how Synchron’s Brain Computer Implant is helping people living with Motor Neurone Disease regain independence by enabling them to control digital devices using only their thoughts. Tom explains the latest clinical developments, what the future holds for brain-computer interfaces, and why this technology has the potential to transform the lives of people living with paralysis. #BrainComputerInterface #Stentrode #ThoughtToText #CommunicationTechnology #AssistiveTechnology #MND #MotorNeuroneDisease #ALS #Neuroscience #DigitalInclusion #Independence #Synchron #TomOxley #LetsTalkMND #Podcast

In this episode, I’m joined by Marlene Lewis and her daughter Nicole to share the story of their husband and father, Shane Lewis, who lived with MND. Together, they speak candidly about the realities of living with MND in regional Australia, where accessing specialist care can be incredibly challenging. They also discuss the additional barriers faced by people diagnosed over the age of 65 who are ineligible for the NDIS. Shane made the courageous decision to access Voluntary Assisted Dying, and Marlene and Nicole generously share their experience of the application process, including the difficulties created by living in a regional area where even video medical appointments weren’t readily available. Above all, this is a conversation about Shane himself—a much-loved husband, father, mate and all-round great bloke. This is an honest and important discussion about love, loss, inequity, and ensuring every Australian living with MND has access to the care and choices they deserve.

In this episode, Todd Johnson shares his personal journey with MND, the challenges of diagnosis, and his passionate advocacy for improved care and innovation in the sector. Todd is also the Chair on MND Victoria Discover insights on care gaps, technological opportunities, and how community and collaboration can make a difference.

Gary Suntup is a deep thinker, he is a psychologist he shares his personal journey of losing hobbies and passions due to health issues, exploring how this impacts identity and self-understanding. He also discusses his practice of radical acceptance.

Jeff Jenkin and Sarah Rigg are a young couple with small sons. Jeff was diagnosed with Bulbar and Upper limb MND in August of 2024. 3 months after he qualified as a Pediatric surgeon. This heartfelt interview with Sarah Rigg and Jeff Jenkins explores living with MND, diagnosis journey, advocacy efforts, and maintaining hope and humour amidst adversity.

Joseph Skewes and Bec Francis are the co-founders of Curalysis, a lived-experience-led digital health platform being built by people living with neurological conditions.. Joseph lives with MND, and Bec lives with refractory epilepsy. Curalysis is built around a simple belief: people living with complex neurological conditions are already generating valuable day-to-day health data, but too much of it is fragmented, unstructured, or lost. The platform helps people track symptoms, function, interventions, and changes over time, with the aim of identifying patterns, improving personal insights, and building richer data to support better care, treatment, and research. Joseph and Bec are currently fundraising to support the next stage of development, including ethics, compliance, and clinical trial preparation. They are also seeking a research collaborator institution to explore how Compass can support people with MND by improving the sequencing and personalisation of information and care navigation. For more context, you can read about the Compass prototype here: https://curalysis.com/blog/theres-no-map-for-this You can also support or share the Curalysis GoFundMe campaign here: https://www.gofundme.com/f/two-founders-two-diagnoses-one-platform-help-us-prove-it

The conversation covers Professor Dominic Rowe's work with MND, the Riverina research findings, the increase in MND mortality and its environmental factors, the controversy around placebo use, the importance of understanding the cause of MND, environmental factors and clustering, the significance of making MND a notifiable disease, and the funding and operations of the MND clinic. The conversation delves into the challenges of healthcare delivery and funding, emphasizing the importance of clinical trials funding and the need for empathy over sympathy in patient care.

The conversation delves into the importance of family storytelling and the impact of active listening. Bill shares his personal journey, motivation, and the art of understanding people. The exploration of life stories, memories, and the legacy for future generations is highlighted, along with the impact of tough love and parenting. The reward of family storytelling and engaging future generations in storytelling is emphasized, along with insight dinners and personal stories.

The conversation covers Nicole's personal identity, professional journey, involvement in the MND community, participation in charity events, running marathons for MND, fundraising, coping with community involvement, and future marathon plans. It also highlights the impact of MND on regional areas and offers advice for children of MND patients.

The conversation with Aaron Hintala revolves around the themes of hope, identity, the impact of MND diagnosis, faith, community support, and resilience. Aaron's unwavering hope and faith, along with the compassion and support from his community, have been instrumental in his journey with MND. His identity as a husband, father, and surfer has been redefined, and his resilience is evident in his ability to find alternative ways to continue enjoying the ocean despite physical limitations. https://www.instagram.com/als_and_us?igsh=MWxjdGV5d2Z3dmR0cQ==