“Team Sharon” Strength, Support & Positivity in the Face of MND
30 June 2025
Finding beauty in the everyday — Sharon’s journey, grounded in the simple pleasures of life in Dongara - Port Denison, Western Australia.
When Sharon Johns was diagnosed with Motor Neurone Disease (MND) in 2021, she could already sense that something wasn’t quite right. Her foot had started to drag, her balance was off, and her ability to run had faded. “It was my GP who first really noticed something was wrong,” Sharon recalls. “She took one look at me walking and sent me for an MRI.” Not long after, Sharon received a referral to a neurologist and a diagnosis that changed everything.
Now four years into living with MND, Sharon’s journey is one of resilience, resourcefulness and remarkable grace. From her home in Dongara, she has managed her own support network, coordinates a rotating team of carers, attends peer support groups and even takes part in voice banking — all while staying upbeat and determined.
Sharon finds positivity and perspective in her deep sense of spirituality. “This is my earth journey,” she says. “I draw on my inner strength and on all the life skills I’ve built over the years.” Rather than retreat, she decided early on to make a difference. She rallied her friends and local community to organise two fundraising events for MND WA, raising over $17,000. “All the food and prizes were donated,” she smiles. “It was a huge amount of work — but so worth it.”
Sharon Johns, whose strength and warmth continue to shine through as she navigates life with MND.
Sharon is supported through the Neurological Council of WA’s NeuroCare nursing program and the NeuFriends Coffee Club, a peer support group that meets in Geraldton. These services, she says, have made a profound difference.
Her neurologist, Dr Dev Nathani, first referred her to Deb Barndon, a NeuroCare neurological nurse based in Geraldton. “Deb’s amazing,” Sharon says simply. “She’s helped me so many times.” When Sharon was struggling with stiffness and pain, Deb raised the possibility of Baclofen. “I mentioned it to my doctor, and he agreed. It made a huge difference. She knew exactly what might help. It’s that kind of insight that matters.”
What sets Deb apart, Sharon says, is her ability to bridge the space between clinical appointments — not just offering reassurance but bringing neurological knowledge into the home. “I’ll ask her something, and if she doesn’t know, she finds out and emails me in a couple of days. She follows through. She’s got good knowledge and she genuinely cares.”
That combination — of empathy, expertise and initiative — is at the heart of the NeuroCare program. Delivered by the Neurological Council of WA, it’s a nurse-led, community-based service funded by WA Health that provides specialised neurological support to people in their homes at no cost. For people like Sharon, who live in regional WA, having her neurological nurse and other health professionals come to her in Dongara has eased the pressure of travel and coordination. “My physio, OT and speechie all come to me now — and that’s made it easier,” she says. “Having Deb come to me too has been a huge help. Travelling is very tiring, and this kind of care takes the pressure off.”
Through Deb, Sharon also found her way to NeuFriends, a peer support group that offers practical tips, friendship and a sense of belonging.
“Meeting others with similar conditions has been so important,” she says. “We share ideas. We laugh. There’s an understanding in the room — no one has to explain themselves.”
While Sharon sometimes misses the Geraldton sessions due to treatment or travel, she always looks forward to returning.
For Sharon, allowing people in — from nurses to friends to fellow group members — has been part of staying connected and hopeful. “Be open minded and allow people in to help,” she says. “It’s what makes those small moments — like a coffee by the beach or a good laugh with others — still possible.”
Living regionally adds complexity to Sharon’s journey — long trips to Perth, navigating funding, coordinating care. “It’s like a new job,” she says, referring to the paperwork and scheduling she manages as a NDIS participant. “But I used to be a bookkeeper, so I’ve got the skills. It’s important to me that I do as much as I can myself.”
Sharon maintains a sense of normalcy through structure and humour. Her cupboards are labelled with maps she’s drawn for her carers, and her clothes are colour-coordinated. “I’ve always been organised,” she says. “It makes me feel like me.” Her care team stay connected through a group chat affectionately named “Team Sharon,” and she laughs about testing out equipment. “I’ve trialled everything — I could write a book on what doesn’t work! Team Sharon works really well,” she says. “If someone’s away, someone else steps up.”
But Sharon also speaks candidly about the challenges — especially for others who don’t qualify for NDIS or who face age-related funding limitations. “It’s not fair,” she says. “People with the same illness can be left without the support they need, just because they’re over 65.”
Despite the hurdles and inevitable down times, Sharon remains grounded and philosophical. “There’s always hope, and there’s always care,” she says. “Be open-minded. Let people in. Take pleasure in small things — a coffee by the beach, a drive in the car. Every day is a new day.” It’s this openness — to help, to connection, to joy — that has allowed her not just to cope, but to continue living well with MND.
