Maxine was diagnosed with the degenerative brain condition motor neurone disease this year.
Maxine wants to be positive about the time that is left.
For a while, she could not utter the words.
“I can now say ‘I have MND’ and not cry,” she said.
The former property manager has had to relinquish her job, as the illness has attacked her throat and tongue and affected her ability to speak.
It’s a cruel aspect of the disease that she is alert and thinking clearly but unable to express herself clearly.
Maxine has suffered the indignity of being refused service at a pub because the staff thought she was drunk, and she has had to explain her illness to a police officer at a traffic stop, who was suspicious of her speech.
She spoke to The News to promote the Daniher Drive, a fundraising campaign for research developed by AFL legend Neale Daniher.
“I want to raise awareness. If people don’t talk about it, people won’t be aware of what it is,” Maxine said.
And she feels for her friends who have been distressed by the diagnosis but stand by her. Her partner got to know her only a short time before the diagnosis but continues to support her.
Maxine sometimes makes light of her situation and tells me she is planning her funeral so that it is done “my way!”. “I told my friend: don’t stuff it up,” she said.
Although she often plays down her feelings, she has moments of pure anguish. Sometimes, in the darkness of night, she says out loud: “I don’t want to die.”
Maxine was hit by the disease last year. At first, she was told it may have been a stroke. Then, she saw an ear, nose and throat specialist. Finally, she underwent a range of tests (there is no single test for MND) before receiving the crushing diagnosis.
Maxine says she doesn’t want people to pity her but wants to be treated as she was before the diagnosis.
She will attend a fundraising dinner on October 13 in Shepparton for MND, in a campaign dubbed the Daniher Drive. The dinner is already booked out.
People wanting to donate can go to https://fightmnd.org.au/
What is MND?
MND stands for motor neurone disease. Motor neurones are the nerves that control our body movement.
With MND, something goes wrong with the motor neurones, and the messages from the brain stop getting through. This means the muscles that enable us to move around, speak, breathe and swallow fail to work normally.
As the nerve cells slowly stop working, muscles gradually weaken and waste. No two people experience the exact same speed and pattern of weakness; therefore, each person living with MND should be cared for in a way that best suits their needs.
– MND Victoria.
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