When Barry Campbell — known to many in Mount Barker as “Baz the Butcher” from his years of work in the local community — began to slur his speech and stumble occasionally, his partner and carer, Nola Hopper, feared he might have had a stroke. That was back in 2022. “His speech had become really slow,” Nola recalls. “We thought it might have been a stroke, but the scans came back clear.”
The couple faced a lengthy wait to see a neurologist in Perth, involving long drives and significant out-of-pocket costs. After months of uncertainty, further tests finally confirmed the real cause: Multiple System Atrophy (MSA-C), a rare, progressive neurological disorder marked by a distinct “hot cross bun” sign on MRI scans.
Navigating a Rare Diagnosis
The diagnosis explained Barry’s troubling symptoms, though having a name for the condition didn’t make it easier. MSA is often described as having features of Parkinson’s and Motor Neurone Disease combined — a confusing picture for patients and families, and one that remains poorly understood.
Barry and Nola soon learned how rare the condition is — affecting only around five people in every 100,000. They also realised that Barry’s history of vivid dream enactment, known as REM sleep behaviour disorder, had been an early warning sign. “He would act out his dreams — running or kicking in his sleep,” Nola says. “Back then, we had no idea it was connected to something like this.”
Looking back, Nola reflects that if they had known what the signs meant, they might have done more before Barry’s mobility declined. Sharing this information now, they hope, may help others learn about the condition and recognise the warning signs — so people can seek neurological advice and get support earlier.
Condition Spotlight: Multiple System Atrophy (MSA)
What is MSA?
Multiple System Atrophy (MSA) is a rare, progressive neurological disorder. It affects movement and balance (motor system) as well as involuntary functions such as blood pressure, heart rate and bladder control (autonomic system).
How rare is it?
MSA affects around five people in every 100,000, with symptoms usually beginning in the 50s or 60s.
Types of MSA
- MSA-P (Parkinsonian type): Parkinson’s-like symptoms such as stiffness and slow movement.
- MSA-C (Cerebellar type): Problems with coordination, walking and balance.
Common Symptoms
Symptoms vary between people, but often include:
- Problems with balance and coordination
- Stiff or slow movements, similar to Parkinson’s
- Dizziness or fainting when standing (low blood pressure)
- Bladder urgency or incontinence
- Sleep disturbances, including acting out dreams (REM sleep behaviour disorder)
- Changes in speech and swallowing
Why early recognition matters
While there is currently no cure, earlier diagnosis means better planning, access to therapies, and more time to adjust before mobility is lost.
The Battle for Support
Receiving a diagnosis was only the beginning. Accessing services and funding through the NDIS quickly proved to be another challenge. Their first application was denied and had to be resubmitted with additional evidence. It was completed with the assistance of the Neurological Council of WA’s Community Neurological Nurse, Charlotte. “We had to go back and get the neurologist and GP to re-write everything, just so it matched,” Nola explains.
Even once approved, the plans often struggled to keep pace with Barry’s rapidly progressing condition. At times they ran short of funding for continence products, were unable to secure all the equipment recommended by allied health professionals and are still waiting for additional support worker hours to be confirmed.
“It feels like a full-time job,” Nola says. “I’m constantly on the phone, chasing things up.” The process has been draining, particularly alongside her own work and caring responsibilities. Nola recalls, “At one point, someone even told me to put Barry in hospital or quit my job. That was hard to hear.”
The financial pressure adds another layer. Barry currently travels from Mount Barker to Albany up to four times a week for hydrotherapy — a routine that is tiring, costly, and heavily reliant on NDIS support worker hours and mileage payments. Nola points out that more practical, cost efficient local solutions — such as access to a hydrotherapy pool closer to home — would make a huge difference.
For Barry, physical activity isn’t optional. Exercise helps maintain muscle strength, mobility and quality of life — every session matters. Yet the time and energy spent navigating systems and logistics often overshadows the moments they would rather devote to simply living life.
The Weight of Care
Nola works three days a week at the local bank while also managing Barry’s daily care, appointments, medications, and their three-acre property. Much of her energy is consumed not in caring for Barry directly, but in navigating the systems designed to provide support. While those services are vital and valued, the process of accessing and coordinating them can be overwhelming. “It’s like having a second job — advocating, sending paperwork, chasing calls,” she says. “It leaves so little time for actually living well.”
For Barry, the hardest part has been losing the things that once defined him — sport, the ability to move easily, and the freedom of camping and caravanning. Simple tasks like walking or bending down are fraught with risk, and the sports he once loved are out of reach.
Music is a source of enjoyment for Barry. Talking about songs and past gigs brings back memories of moments with friends where music brought people together. Singing along and listening still lift his spirits, and Nola encourages him to keep that connection alive.
Support That Makes a Difference
Amid the pressure, a service that stands out is NeuroCare, the Neurological Council of WA’s nurse-led community program. Their Community Neurological Nurse, Charlotte, provides not just clinical oversight but vital moral support. She reviews Barry’s progression, checks medications, follows up on referrals, and makes sure nothing is falling through the cracks.
“Charlotte’s amazing,” Nola says. “She remembers what Barry could do last time, compares it to now, and gives advice. If she doesn’t know the answer, she finds out and gets back to us. She’s even helped us work through medication changes.” For Nola, Charlotte is more than a nurse — her support makes her feel less alone in the fight to keep Barry’s care on track.
Day by Day
Barry and Nola lean on each other in different ways. Nola admires Barry’s even temperament and his ability to take life one day at a time. Barry, in turn, credits Nola’s persistance. “She never gives up,” he says.
Behind their humour and determination, however, lies the reality of a couple managing a heavy load. Regional living brings extra challenges, and navigating services requires energy that might otherwise go toward enjoying life and small daily pleasures.
Barry’s advice to others with MSA is straightforward: “Keep active. Do what you can. Take each day as it comes.”
Their story is less about easy inspiration than about tenacity — showing the strength required to live with a rare condition while making the most of the support that is available. And amid the strain, there are still moments of joy: music, friends, and gratitude for the connections that make a meaningful difference.