#cbgd

Isolation is one of Australia’s defining characteristics. It has shaped our natural environment, our culture, economics and our mentality. It is ingrained so deep that it’s influence is sometimes hard to see; it hides, lurking in the background.

It can be ugly and it can be brutal. Sometimes it is protective. It builds character as it strains relationships.

Some people choose isolation. Others have it is thrust upon them. It’s why so many young Australians travel abroad, seeking to embed themselves in other cultures.

Having grown up in Australia, traveled abroad, lived in the US and recently returned, I write about isolation now because I also see it as a defining symptom of corticobasal degeneration, the neurodegenerative disease with which my mum has been battling.

CBD is rare. Research estimates it affects approximately 1 in 100,000. It doesn’t discriminate between men and women. It typically strikes around the age of 60 and on average lasts six years before related complications result in death.

No one really knows what causes CBD, but it involves an overproduction of a type of protein in the brain. This leads to progressive damage to and loss of neurons - the brain cells that send signals to the body.

The brain’s ability to properly connect with the other parts of the body fails. In other words, it isolates the mind from the body.

CBD is a cruel disease with many challenges. The things most people take for granted – walking from your bed to the bathroom, lifting a cup of coffee to your mouth, scratching an itch on your back – haven been gradually stolen from my mum. But its effect on communication is perhaps the cruelest. As the disease has progressed, language and speech have become increasingly difficult. She does not suffer from dementia. Mum knows what she wants to say, but can’t mentally or physically string the right words together.

Essentially, she has been reduced to what she has expressed in the past. Because she can’t articulate what she needs and wants, she is bound to what we know about her; what she likes to eat and when, her favourite tv shows, which of her friends she wants to see, what she likes to listen to, what position in a chair is most comfortable for her, when she needs to go to the bathroom.

Her body is isolated from her mind and her thoughts are isolated from the world. It’s a heartbreaking situation and impossible to imagine how hard it is for her to cope. She is awake, but trapped in what must be some kind of ceaseless nightmare where she is unable to express basic human emotions.

This isolation manifests itself in other people. It’s a pulls family and friends in like a dark wormhole. It breeds frustration, anger and anxiety when strength, patience and calmness are essential.

As her son and a carer, at times I have felt isolated from myself, unable to fully express my emotions. It has been like trying to distill a cocktail of guilt, gratitude, despair and love… things that don’t normally go together so you don’t know how to extract them. This was initially compounded by isolation from the rest of my life, from my girlfriend on the other side of the world to my friends here in Sydney, although I am finding it easier to marry up these two disparate worlds now.

Ultimately, I’m convinced that isolation can make you stronger. It forces you examine yourself and what is important to you. Part of me has always been drawn to isolation as a way of finding truth in an increasingly complex world. It has helped me accept that with love and beauty, naturally comes pain. One of my favourite books speaks to this subject in the form of a travelogue. It’s called The Snow Leopard and comes highly recommended.

There are few support resources for people impacted by CBD, but they do exist. This website includes self-penned case studies from other care givers. A google search will reveal a number of medical publications on the topic. There is also an active support group on Yahoo.

The Rare Dementias: Corticobasal Degeneration (CBD)

Corticobasal degeneration (CBD) – also known as corticobasal ganglionic degeneration (CBGD) – is a rare (occurs in less than 1% of the population) and progressive form of dementia.

The onset of symptoms typically occurs after the age of 60 and the average duration of the disease from onset of symptoms to death is six years.

Although the underlying cause of CBD is unknown, what is known is that…