Marion McCabe doesn’t ever resent being one of the 730 Australians diagnosed with motor neurone disease annually. “I sometimes think this (MND) has been a blessing in disguise. I’ve met the most wonderful people,” Marion said.
The ones she describes as her “little rays of sunshine” are her Ballarat Hospice Care team, comprising of palliative care specialist nurses and her bereavement worker Liz Dawson.
“Liz is all about my state of mind, mine and (husband) Andrew’s,” Marion says.
“She’s very attuned and knows me very well. She is very truthful and doesn’t sugar coat things, which I appreciate.
“And she tells me her personal stories, which makes me then want to tell her mine.”
Andrew agrees that Liz has been one of his wife’s main supports.
“She’s been a very good friend to Marion,” he said.
Indeed, even their little dog Milly adores Liz – jumping into her lap for a pat whenever she visits.
Ballarat Hospice Care first came into Marion’s world in late 2014, a couple of years after she was first diagnosed with motor neurone disease after a two-year battle for answers.
“I had developed foot drop and my son, who is a nurse, saw me walking and told me to go to a doctor.
“It took two years of nerve conduction studies, MRIs, all the tests. Mine’s a slow form (of MND) so they have to rule out everything else first.”
Marion had resigned as a public librarian in Rochester before they moved to Ballarat just before diagnosis and she quickly joined a book club, the Wendouree library and had started volunteering at St John of God Hospital.
In fact, when her MND progressed and she could no longer work as a “meet and greeter”, Marion reluctantly tendered her resignation to the hospital head of volunteers Eunice Reynolds.
“But she wouldn’t accept it – I’m still on their books!”
After diagnosis, Marion and Andrew were put in touch with Motor Neurone Disease Victoria, who linked them in with Ballarat Hospice Care.
Palliative care specialist nurses visit fortnightly and have proven vital in linking Marion with a Ballarat GP with a high degree of MND knowledge.
“They were just the most wonderful link between me and my GP. Anything like that, they have been on it straight away.
“I can ring day or night, weekend or weekday, they are just wonderful.”
On the alternate week, Liz visits and has been committing Marion’s life story to paper as part of the Words of Life program.
When she first began using Ballarat Hospice Care, Marion was still mobile and “fully functioning” but had been forced to start using a walking stick.
But in typical feisty Marion style, she got “one with bling” from the Convent Gallery in Daylesford.
“It got a lot of attention, that stick,” Marion said with one of her hearty chuckles.
Slowly she progressed to one crutch, then two, a push wheelchair and an electric wheelchair donated by MNDV.
“Then we ended up buying our own, custom made for me.”
Ballarat Hospice Care has also loaned Marion an over bed table and a princess chair for pressure relief.
Every three months, her Ballarat Hospice Care workers and her other health professionals hold a meeting to discuss Marion’s current physical and emotional needs and she has joined the Ballarat MND Support Group.
Together with Liz, Marion has also done her “five wishes” which is essentially an end of life planning document but which she said had given her a lot of information about the options ahead of her.
Andrew has also attended carer information sessions which he said were very worthwhile.