The plight of people suffering from spinal cord injuries became personal for Kiama Lions Club in 2018 when one of their members had a fall which made him a quadriplegic.
The situation of Chris English and his wife Bobbie has been made worse by his age disqualifying him from being covered by the NDIS (outlined in our article on 24 June).
Chris and Bobbie were given the responsibility for choosing where $20,000 raised by Kiama Lions to help research into spinal cord injuries should be directed. They chose the Lions Australia Spinal Cord Fellowship and the Spinal Cord Injury Recovery Research Program at the University of Technology Sydney’s Centre for Neuroscience & Regenerative Medicine.
The Bugle had the opportunity to talk with the head of the Centre, Professor Bryce Vissel, when he visited Kiama to find out more about the ground breaking research his team is conducting.
The Centre for Neuroscience & Regenerative Medicine has been established by UTS over recent years to focus research on incurable neurological disorders.
“Our goal is to take the diseases of the nervous system that are currently called incurable – spinal cord injuries, brain injuries, Alzheimers, Parkinsons, MS – and accelerate pathways to recovery,” says Professor Vissel.
“We want to bring what is already known in the world to fruition as fast as possible, to accelerate its movement into a clinical setting to treat patients.”
He has worked on understanding spinal cord injuries for decades, and has gathered a team of international and local researchers to work on ways of accelerating recovery for spinal cord patients.
“When we talk about recovery, we mean some recovery of function that was previously lost,” says Professor Vissel.
“We are looking at recovery to enable the movement of limbs, and regain some control of body temperature control and bodily functions.
“The extent of the recovery will depend on each individual’s injury.”
Spinal injuries sever the connection between the brain and the rest of the body.
“The consequences of spinal injury are even more devastating that most people think,” say Professor Vissel.
“It is also the loss of the ability to control your bowels and bladder, sexual function and temperature control, as well as the danger from spikes in blood pressure.
“The irony is that while those with spinal cord injuries can’t feel anything below the injury, they suffer extraordinary pain despite of that. It is a very real experience, there is nothing phantom about it.”
The good news is neuro modulation technology has already been shown to be able to accelerate recovery for spinal cord patients.
Overseas, more than 40 individuals – some paralysed over 20 years ago – have experienced some improvements in motor function, pain, voluntary movement, bladder and bowel control, sexual control, and trunk stability, thanks to the discoveries of Professor Reggie Edgerton.
Considered the ‘father of modern spinal neuromodulation’, Professor Edgerton shares his time between UTS and UCLA, after Professor Vissel recruited him to the Centre with the goal of hastening the development of this technology in Australia.
Together they have overseen the construction of the world’s first bespoke spinal cord injury recovery facility.
Its position in UTS’ new technology precinct means the spinal cord program has access to experts in engineering, mathematical modelling, complex motion capture technology, computing and robotics, as well as medical science.
But what is neuromodulation, and how will it help?
“After a spinal cord injury, there is still a very small amount of connectivity between the brain and the lower spinal cord in most instances,” says Professor Vissel.
“In a nutshell, a neuro-modulation device can elevate a spinal cord’s receptivity to the very faint signals coming from the brain.”
He likens it to the Parkes telescope amplifying sounds from outer space.
“It lets the spinal cord hear the signals from the brain in a more profound way.
“Once the very faint signals are heard, they work together to increase their ability to hear each other.
“Over time you can get this remarkable recovery. Some people have been able to stand on their own.”
While originally an epidural stimulator was used, the latest generation of devices being worked on by Professor Edgerton will be placed on the skin above the spine.
Professor Vissel expressed concern that Chris English is amongst those older people with spinal cord injuries who are without the benefit of the NDIS for their care.
“I don’t think it was the government’s intention to exclude people like Chris from the best possible care,” he says.
“Apart from the inequity of this age discrimination, without ideal care people end up in hospital more often, which costs the government more money.
“Our Centre will advocate for something to be done.”
Given the success of Kiama’s dementia initiatives, a future issue of The Bugle will focus on the Centre’s work in that area.
Details: To find out more, or to support the Centre’s work, go to Centre for Neuroscience & Regenerative Medicine