Seven years ago, Paul Kelly was diagnosed with motor neurone disease (MND), also known as amyotrophic lateral sclerosis. Initially, he believed it was “just a temporary quirk” in his movement.
“The idea that I might have MND was far from my mind,” he said.
It wasn’t until he was overseas in India when his symptoms became more noticeable.
“I showed up for my appointment and [my neurologist] announced it — motor neurone disease.”
MND is a neurodegenerative disease, like HSP, that results in a progressive loss of voluntary movement. Since being diagnosed, he has lost the ability to walk and move his arms, and is losing the ability to speak. Despite this, Kelly says there are a lot of positives living with MND.
“The opportunity to re-evaluate my life and life in general … In many ways, I am stronger and more at peace now than I have ever been.”
It’s with this attitude, along with a degree in communications and journalism, Kelly was involved in helping his father run a local government election campaign in Tasmania by using eye-gaze technology.
“Basically, it involves a laser that is able to track the movements of my retina,” he said.
This technology allows an individual to use a computer without a keyboard or mouse, providing freedom, connection, and opportunity. With technology like this, along with Elon Musk’s Neuralink on the horizon, irrespective of the federal inquiry looming, there is a lot of hope and potential in the years to come for people living with neurological impairments and disorders.
