Motor neurone disease: No cause, no cure, no remission
As Motor Neurone Disease Awareness Week kicks off, MND WA ambassador Ross Lyon opens up about losing his mother to the disease and the vital help his family received from the MND Association during the ordeal
That’s the unofficial catch-cry and unfortunate truth behind motor neurone disease, or MND, an affliction in which the nerve cells (neurones) controlling the muscles that enable us to move around, speak, swallow and breathe fail to work normally.
It has gained notoriety in the United States, where it is known as Lou Gehrig’s Disease, after the New York Yankees’ baseball legend who was forced to retire in 1939 after diagnosis. Gehrig died two years later at the age of 37.
Fremantle Dockers’ senior coach Ross Lyon knows the devastating effects MND can have on a person diagnosed and their family.
His mother, Louise, passed away from the debilitating disease in late 2004, just one year after she had been diagnosed.
MND does not discriminate. Lyon’s mother was a fit lady who exercised every day.
No one saw MND coming, and no one could have predicted what would eventuate when the first symptoms surfaced.
“It started in her calf and worked all the way up until she passed away,” Lyon said.
“She went from a fit, active woman, to chair and bed ridden. She couldn’t move her arms or her legs.
“To see her debilitated was insidious.”
After the diagnosis, Ross and wife Kirsten moved in with his mother and father, Maurie.
“I had no children at the time, my dad was in his 70s and my mum was 69,” Lyon said.
While Ross and Kirsten gave all the support they could, bearing the MND burden was not a two-person job.
That’s when the MND Association stepped in to offer their support to the entire family.
Lyon said the guidance and resources MND Association gave were substantial during a difficult time.
“They provided nurses who would come in and help, even in the middle of the night. They looked after mum’s health, but also things like a lifting chair, resources to help my dad cope physically,” he said.
Louise’s final days were incredibly difficult for the entire family.
“By then, the disease was up to her throat, so it was a suffocation, an inability to breathe,” Lyon said.
Despite the pain MND put the family through, Lyon still found a positive.
The disease does not affect the mechanics of the mind, meaning his mother was herself until the end.
“Her ability to talk and communicate and her personality was always there,” he said.
“We had some great talks.”
Lyon’s advice, whether it’s to a person who has been diagnosed, or to people close to someone who has MND, is to cherish the time left.
“You’re fortunate that you can communicate,” he said.
“I remember sharing some Chinese meals and just sitting there talking with mum.
“Enjoy the time, because there’s no time frame with MND. It goes at different rates.”
Lyon is now an ambassador for the MND Association of Western Australia, which is an associate charity partner of the Fremantle Dockers
Throughout MND Awareness Week, beginning Sunday 5 May through to Saturday 11 May, the Freo coach will be doing his bit to promote the Association’s messages and increase the public’s awareness and understanding of MND.
Lyon will wear the Association’s symbolic Blue Cornflower on his collar throughout his media commitments during MND Awareness Week, and the coaching team will each wear one during Saturday night’s blockbuster clash with Collingwood at Patersons Stadium.
The Blue Cornflower is a hardy flower that can withstand extreme conditions, its colour never fading. Much like the values Lyon holds dearest out on the football field, it is a symbol of resilience and strength.
He encourages anyone whose life has been touched by MND to seek out the MND Association of WA.
“Tap into the support and guidance available at the MND Association of WA, because MND is not something you’ve navigated before and you need the advice on what to expect, and the ensuing support.”