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MAY is PSP/CBD Awareness Month Worldwide, two rare and devastating neurodegenerative diseases.

The Butcherbird Sings by Julie Campbell is a story that was born from living with such a disease. It contains Steve Campbell’s legacy – a message to all to never take your health for granted, both mental and physical.

Steve was last in the ‘Independent’ then called the ‘Review’ with his Obituary on June 5, 2013. He had been the Yamba Fair Newsagent from 1992-1999 and then established the Yamba Bookshop in 2001. Julie Campbell, married to Steve for 23 years, has just released her book The Butcherbird Sings which provides an insight into what it is like to live with a neurodegenerative disease that evolves into dementia, a rare and little-known condition, with no known cause or cure. After almost two years of tests Steve was diagnosed with CBD or Corticobasal Degeneration.

It is timely to highlight this story as May is PSP&CBD Awareness Month Worldwide. Both PSP (Progressive Supranuclear Palsy) and CBD belong under the Atypical Parkinsonism umbrella. It could happen to anyone! This is a confronting story of an intelligent family man stripped of all he treasured in life. It is an insightful memoir of love, trauma and resilience that offers help for the thousands of others similarly afflicted, their carers, and families.

Julie’s book is a memoir and as such is her story which explores her early life lessons with ill-suited relationships until she finally finds love with Steve and the ensuing happiness that unfolds with their family of two children … until the diagnosis that no one had seen coming. It continues to reveal what it is like to be a young family facing a disease that is supposed to belong to those with white hair and walking frames.

It is ironic and sad that a man who loved literature would himself become the subject of such a book. It is Julie’s fervent wish that her story can bring connection for others going through this harrowing journey as well as provide a resource of healthy ways for everyone. A further driving force for Julie is to lend a voice to the cause for Dying with Dignity which is yet to pass legislation in NSW.

She depicts the senselessness and cruelty of forcing people to live with degrading degenerative diseases with no prospect of improvement. It is a story that mirrors the plight of many others, an inhumane way of living that we would not allow our pets to suffer. Julie’s story also offers ways of coping post death. It highlights the necessary shift of focus from care-giving to nurturing oneself and the many varied options she pursued.

The Butcherbird Sings is available at NewsXpress in Yamba Fair, (the same newsagency Steve and Julie bought back in 1992), at the Book Warehouse in Grafton, online at badapplepress.com.au and as a kindle/ebook on amazon.com.au

Julie will be contributing a percentage from every sale to foundations who are researching a cause and cure for CBD.

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