About this blog

On 7 January 2013, when I was 43 and our daughter 6, I was diagnosed with Motor Neurone Disease (MND), which progressively steals the ability to move, speak, swallow and breathe, and is typically fatal within 5 years. After an initial period of shock and grief and telling family and closest friends, I gradually started going public, including through sharing snippets of our life with MND with friends on Facebook.

Almost 6 years later, after a hairy brush with carbon dioxide narcosis, I made the life-changing-and-extending decision to have a tracheotomy and laryngectomy. I wrote about both of these for my friends, and – because this is an unusual decision in Australia – decided to go public. My friend Julie suggested, and helped set up, this blog with this catalytic post, On deciding to keep living with MND: A triptych

My plan is initially to populate the blog with previous writing and links to public videos etc, cunningly back-dated to when they first appeared to produce a chronological sense of my MND trajectory. I hope this will also be a space for my writing into the future.

For more about me, see: On five years since my MND diagnosis. And being lucky.

I write using the NeuroNode, by Control Bionics. See NeuroNode and MND or Control Bionics

I have been an Honorary Lecturer, School of Health Sciences, University of Sydney University since mid 2014, and a Board member MND NSW since late 2013. This blog reflects my personal experience and views.

Credits: cover photo, and most of the photos likely to appear, are by Densil. Thanks to Julie and Lexi for technical advice to this beginner WordPresser. All technical, aesthetic and content faults are down to me.