Shepparton local Maxine Gee has been battling MND for the better part of a year, but hasn’t let that stop her from living life to the fullest.
Hold tight - we’re checking permissions before loading more content
In July 2023, Maxine was diagnosed with onset bulbar motor neurone disease. This degenerative and ultimately fatal condition affects hundreds of Australians every year, and has left Maxine non-verbal.
She said there were some signs, but never expected this to be the outcome.
“My voice had started to be a little slurry in February 2023 and had gradually been getting worse. It was becoming very obvious that something wasn’t right,” Maxine said.
“I miss not being able to join in conversations or just say hi when I see someone I know down the street.
“My brain isn’t impacted, so I still understand everything. I just struggle trying to articulate it all.”
Maxine said when she found out, she barely held it together.
“I finished the Zoom and sat on the floor crying and screaming. I left work, called (my partner) Damien and my good friend Cameron. When I drove home, they were both waiting for me,” she said.
“Damien and I had only met six weeks earlier, so thousand thoughts were going through my head, ‘how long have I got? Will he leave me? How do I tell people’?”
The idea of telling her friends what was happening left Maxine with many thoughts running through her head.
“My tribe of friends were all anxiously waiting to find out why I kept slurring my words,” Maxine said.
“I knew they’d be there for me in whatever capacity I needed them to be, but I have to tell them that I’m terminal. Their best friend is going to die from this, but before I die, they’re going to have to watch me decline.”
The idea of having to tell her family what was going on left her with more thoughts running through her head.
“How do I sit down and explain this to my Dad? He had previously told me how relieved he was that I didn’t have cancer,” Maxine said.
“I was already estranged from my daughters, so I wouldn’t be the one letting them know. But that didn’t stop me worrying about how they would cope with the news.”
On top of that, Maxine’s diagnosis forced her to stop working and give up her career, which she said was hard to walk away from.
“My voice was already slurring, and clients thought I was drinking at work. I’d been in the real estate industry for almost 30 years and had been a senior property manager for over 10 years, and I have so much knowledge and am respected by so many in the industry,” Maxine said.
Simple everyday things we take for granted, such as eating and drinking, have become almost impossible for Maxine.
“I can no longer eat food unless it’s pureed, and I struggle to drink as my throat doesn’t open, and I can’t tip my head back to drink or I choke,” Maxine said.
“I struggle now with my cravings for food. I miss a good pizza or steak or a simple kebab. The simple things are what I struggle with, and I know I have no choice but to get a feeding tube.
“I went to a local restaurant with my family, and as I can’t eat normal food, I asked if my meal could be blended, and it couldn’t.
“Why is it that my meal that needs to be pureed can’t be catered for, but restaurants can cater to vegan and vegetarian people and their way of eating, which is a choice?
“I had to watch my family enjoy a meal because of the lack of understanding.”
But, despite her diagnosis, Maxine is making the most of her life and trying to bring awareness to the deadly disease.
She is participating in The Great MND Relay at Lakeside Stadium, Albert Park, in Melbourne on Saturday, April 27.
It’s different from other relays, as the goal isn’t to beat others, but to try and challenge yourself, fundraise, and make a difference to the MND community.
“I’m in a team with my good friend Snezana. She wanted to do it for me, but I didn’t want to miss the opportunity to share the moment with her, so my partner Damien and I will be joining her,” Maxine said.
“They want us to walk for 251 minutes, as that represents the number of people diagnosed with MND in Victoria in the past year.”
Maxine also went to Canberra in March to catch up with Woz, a fellow MND battler, who rode his lawn mower from Toolleen to Canberra to raise awareness and make MND a notifiable disease.
“I had never met anyone else with MND until I met him, and even though we have different variants of MND, the emotional struggle we have is the same,” Maxine said.
“We know this will kill us, and the consistency is we hate watching our families suffer. He was so inspiring and such a true country gentleman.
“He has encouraged me to have a voice in my words, and I am currently writing a book to help others that are newly diagnosed to know type of things they will go through.
“But I do everything with a sense of humour, so I want my book to be encouraging and funny at the same time.”
Maxine said although her diagnosis is filled with pain and hardships, she’s surrounded by some strong people and has so much to live for.
“I have some really bad days where I get so upset about my situation, but 95 per cent of the time, I feel so blessed that I get to see the world the way we all should.
“Life is too short, and we need to embrace every possibility and every opportunity to enjoy every single day.”
Cadet journalist