Damian’s Journey – IBM

In her early 40s, my mum began a journey that would alter the course of her life. Slowly, she experienced weakness and overwhelming fatigue, to the point of having to stop work. As she humorously put it, “chairs, stairs, and toilet seats became my worst enemies.” Sadly, as is common with many struggling with uncommon…

It is said that stress plays a large part in auto-immune disease. There were three stressors in my life – the death of my Father, the death of my first dog, and a bad diet. My DM kicked in immediately after Dad died – I was having a swim the day after his funeral, and…

I first noticed the weakness in my right arm in 2015.  Neurologists did tests and thought the problem came from my spine and I even went to see a back surgeon who then sent me back to neurology.  After many more tests I was told I had motor neurone disease and had between 6 months…

Myositis crept into my world…. George passed away in 2017. He was instrumental in establishing the Victorian Support group – he understood, he cared and he made a difference. In addition to his IBM George had a battle with skin cancer and a brain bleed. George would say to other Myositis patients to take special…

My Journey. I was a happily retired 69 year old woman in around September 2019.  My husband and I had just finished a half lap of Australia, from Victoria, through South Australia to the Northern Territory, then across to Western Australia and down the west coast, across the Nullarbor and home to Victoria. I was…