Published: 11 August 2023
Last updated: 5 March 2024
One of the first things Ian resolved to do after discovering he had motor neurone disease was to convert to Judaism. STEVE MEACHAM reports.
On August 14, Ian, his wife Bianca, and their 10-year-old son Caleb will celebrate what they call Ian’s “tracheversary”.
“It will be four years since Ian had his emergency tracheostomy placed,” Bianca, a former psychiatrist, says. “That saved his life. We consider it his second birthday.
“We aren’t sure yet how we will celebrate this year. We have been busy going out and doing lots of things in recent weeks.”
In December 2016, the then 38year-old - who felt himself reasonably fit and healthy - was diagnosed with incurable motor neurone disease (MND).
Motor neurones are the nerves that control our body movement. With MND, messages from the brain fail to get through to the muscles, meaning that over time speaking, movement and eventually breathing all fail.
Ian, who had also been a psychiatrist, had finally taken himself to his GP, urged by Bianca, after he’d complained he was finding it difficult to swallow because of the build-up of saliva in his throat.
The GP recognised the signs, spotting how Ian’s voice was changing, and sent him to a neurologist specialising in MND.
Ian now communicates mainly through an electronic device, which resembles a child’s Magic Sketch device, writing words with a stylus.
Recalling the diagnosis, he wrote, “It was 10 days before my 39th birthday. My life changed instantly.”
Both Ian and Bianca knew he would lose his ability to move, talk, eat, and draw breath.
According to MND Australia, Ian is one of about 2000 Australians with motor neurone disease. Sixty per cent are male and 58 per cent are under 65. Each day, two Australians die of MND – and two more are diagnosed.
