Help Baz-the-Butcher Get A Bathroom & Raise Funds For MSA

Hi, I'm Jaime, and I'm helping Barry and Nola raise funds for a new bathroom to keep Baz safe at home.

If you know Baz-the-Butcher, then you know Barry Campbell. A very practical, down-to-earth, genuinely good guy. Who, currently is wrestling with a disheartening diagnosis with MSA-C; Multiple System Atrophy - Cerebella, previously known as Olivopontocerebellar Atrophy. MSA-C is a rare, sporadic, neurodegenerative disorder that causes difficulties with balance, coordination, speech, swallowing and autonomic functions of the body - that is incurable. Yep! You read correctly, MSA-C has no cure, has no treatment. Life expectancy is between 6 and 9 years.

At the end of June 2024, Baz received funding from NDIS, after being knocked back the first time he applied in 2023. NDIS is The National Disability Insurance Scheme. It is a scheme of the Australian Government that funds reasonable and necessary supports associated with significant and permanent disability for people under 65 years old. Baz is currently 63 … 18 more months until he turns 65. The NDIS are able to give some support, but there are still significant gaps in his care plan and the future of his wellbeing.

Baz was diagnosed with MSA-C, at 61, in December 2022, after having symptoms for 18 months prior. He is now coming into his 3rd year since his diagnosis, and the effects on his body and his speech, has progressed so rapidly. Totally dependant on using a wheeled walker to move around, unable to stand without support, and his speech is slurred, that at times it is extremely hard to understand what he is trying to say. His ability to do the simplest tasks, tasks that you and I would take for granted, is difficult and is extremely slow. So you can just imagine how frustrating it is for Baz, who once used to be so very active, always on the go, and loving his sports.

Baz has been hospitalised 3 times in the past 2 months due to infections and needing IV antibiotics. And we nearly lost him due to his difficulty with swallowing. But this hasn’t altered his determination to keep moving, and living life on his property. Baz doesn’t drive any more. Instead he relies on Nola, to drive him to and from physio/occupational therapy, and doctors appointments. Barry can no longer renovate the ‘home base’. And therefore, their small home is not nearly as finished as Baz would have liked. He may not be able to build a wall, or lay tiles anymore, but he does get out on his ride on mower to mow the lawn, and the neighbours verges. Uses the mower as a gopher, but only on their 3 acre property.

We need to keep Baz living comfortably in his own home for as long as possible. And to make sure that his life is that of Quality, Safety and Comfort. In order for Barry to safely live at home, the half completed, renovated bathroom (that Baz did himself), now needs to be guttered and redone, so it is wheelchair accessible. Without this new bathroom for Baz, he will have to leave his home and go into some form of care. As Nola - his partner, is unable to shower Baz in the bathroom that they currently have, and for this to be accomplished, we ask for your help, a small donation to put towards Baz’s bathroom. Any support that you can offer, be it a donation, keeping them in your thoughts, or prayers or even words of encouragement, it would mean the world to Barry and Nola.

The past few months have been hard on both Barry and Nola. Facing the uncertain future that they need to navigate, knowing that the financial demands will continue to rise. On going costs of medical support such as physiotherapists, OT’s and speech therapist’s. The cost of fuel to travel down to Albany weekly, and even sometimes, daily. Exploring alternative therapies to help with the symptoms, the aches and pains. A customised wheelchair, ramps, rails and possibly even a hospital bed. It would be futile for me to accurately assess the future financial demands that Barry and Nola will endure and this goal of an accessible bathroom may evolve into a patio, so Barry can have a place to socialise with his children and his extended ‘blended’ family. Or even a kitchen that Baz can access to get a cuppa or glass of water, a biscuit or a piece of fruit cake.

Nola has had to decrease her working hours in order to care for Barry at home, and does not have the time nor the knowledge to complete the renovations herself. Then, you also take in her own battle, with breast cancer and a broken wrist earlier this year that didn’t heal correctly, that she needed surgery. This bathroom is urgently needed. I’m sure that a kitchen and a patio would be an ambition in the future, but the bathroom is the first step to keep Baz safe at home.

Thank you for your valuable time is reading this blog. And thank you to everyone who donates, or reaches out to Baz, keeping him in your thoughts and prayers. The money raised will be used for renovating the bathroom, Barry’s medical costs & any funds raised outside of this will go directly towards research, in hopes to find a cure for any future person diagnosed with MSA.

Barry’s Background….

Baz was born and bred in Merredin. Completed his apprenticeship in Butchering, then moved to Margaret River in 1982. Where he worked in Butcher shops and supermarkets and also owned his own Turf Farm and Beef farm. Barry also helped the local farmers by doing farm butchering. Slaughtering and breaking up the beasts.

Barry had played field hockey throughout his childhood, and continued to play when he moved to Margaret River. He was a representative for the State Country Hockey team, 3 years in a row. He competed with the state country team in Melbourne, Tasmania and of course, Western Australia. Baz played hockey right up until he was 59…. When symptoms started to emerge, and he felt he couldn’t keep playing.

Baz has always been a very social, active and physical person, throughout his whole life. He was a drummer in a band - The Crackerjacks, back in Merredin. He encouraged his own children to love music and taught himself how to play the guitar. Volunteering for the local Bush Fire services in Rosa Brook for many years, as a Captain and a FCO. Coached the kids basketball and both kids and adult field hockey. He played darts, both in Margaret River and Augusta. Barry is known as a joker, always happy to have a laugh.

Baz owned the butcher’s in Augusta for just over 10 years. Every one knew him as Baz-the-Butcher, or blue eyed Baz. Then you had some who would call him ‘Bond’ as many thought he looked like Daniel Craig! He was famous for his ‘Baz Special Sausages’ that had a hint of chilli. These sausages went all over the state of WA. Tourist’s, or semi-locals would purchase a kilo or two before departing Augusta to go home. He cared about his customers, all of them, including the four legged ones, making sure they had purchased the best cut of meat they needed. In 2019, he decided that he had enough of butchering and wanted to take a step back from owning his own business and relax a bit more.

In 2021, Barry and Nola decided they would like to travel Australia. So, they sold the home in Augusta and purchased a property in Mount Barker. This property was to be the ‘home base’. The base to come back to after months on the road. The plan was to work for 3 years and set the ‘home base’ up, then connect the caravan and travel, working here, working there along the way.

This plan, or their dream, came to a crashing holt with Barry’s diagnosis of MSA-C in 2022.

What is multiple system atrophy?

Multiple system atrophy (MSA) is a progressively devastating and fatal neurodegenerative disorder characterised by a combination of symptoms that affect both the central nervous system (which controls how a person moves), and the autonomic nervous system, which controls involuntary functions such as blood pressure or digestion.

The symptoms of MSA reflect the progressive loss of function and death of different types of nerve cells in the brain and spinal cord. MSA is one of a family of neurological disorders known as an atypical parkinsonian disorder. The initial symptoms can be difficult to distinguish from those of Parkinson's disease, and can include:

• Slowness of movement, tremor, or stiffness

• Clumsiness or lack of coordination

• Croaky, quivering voice

• Fainting or lightheadedness

• Bladder control problems

A person with MSA will have increased difficulty with movement and eventually become bedridden. People with MSA often develop swallowing problems that can lead to pneumonia in the later stages of the disease. Currently, there are no treatments to stop or slow the progression of MSA, and there is no cure.

There are two different types of MSA, which are categorised by the person’s most prominent symptoms when they’re evaluated by a doctor:

MSA (MSA-P) has primary symptoms similar to Parkinson's disease (such as slowness of movement, stiffness, and tremor) along with problems with balance, coordination, and autonomic nervous system dysfunction (such as urinary problems, sweating abnormalities, and digestion difficulties).

MSA (MSA-C) is associated with balance and coordination problems (ataxia), difficulty swallowing, speech problems or a quivering voice, and abnormal eye movements.

MSA tends to progress more rapidly than Parkinson's disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin; followed by becoming totally dependent and unable to walk or stand without assistance.

Other symptoms of MSA include:

• Stiffness in the hands or limbs caused by contractures (chronic shortening of muscles or tendons around joints, which prevents the joints from moving freely)

• A posture in which the body leans involuntarily to one side (known as Pisa syndrome)

• Anterocollis, in which the neck bends forward and the head drops down

• Anxiety or depression

• REM (Rapid Eye Movement) sleep behaviour disorder (RBD) - a tendency to act out dreams.

• Other sleep disorders, including sleep apnea