It’s a disease where the muscles to walk, talk and breathe eventually stop working.
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But Howlong resident Terry Kneebone takes motor neuron disease day by day, under the care of his wife, Janelle.
Mr Kneebone, who has difficulty speaking, has faced his condition with bravery.
“It is what it is – there’s nothing you can do about it,” he said.
“Once they tell you, you’ve got to go on with what’s going on.
“Janelle is brilliant.”
Mrs Kneebone held back tears as she eloquently described how unconditional love could be - even after 22 years together.
“He keeps me going,” she said.
“Looking after him, making sure he’s happy, making sure what he has left is good.
“Nothing else matters in this world.”
The couple was heartened to watch a fundraiser at the AFL clash between Melbourne and Collingwood at the MCG on Monday, organised by football identity Neale Daniher, who was diagnosed with the disease three years ago.
Nothing else matters in this world.
- Janelle Kneebone on love for family.
More than $2 million was raised for the Cure for MND Foundation which Health Minister Sussan Ley promised the federal government would match dollar for dollar.
But Mrs Kneebone wanted to underline to The Border Mail the work done by separate organisation MND Australia, which provided them with an electric wheelchair and ventilators, which would usually cost thousands.
“Neale Daniher’s doing such a great job fundingraising for research – it’s is really, really needed,” she said.
“But people don’t understand that MND Australia gives so much else.”
Mr Kneebone also praised Albury-based palliative care provider Lutheran Care.
“Even just getting somebody to sit with you while Janelle goes out – she needs time away from me too to go and relax,” he said.
But the couple was doing it tough financially. “Everything has been ripped up from under us – we’re eating into our super,” Mrs Kneebone said.
Yet in the midst of such adversity, the couple has found solace in each other.
“We reflect a lot, we laugh a lot – we try to keep each other happy,” Mrs Kneebone said.
Mr Kneebone added their love had deepened during this difficult time.
“We’re probably closer together now than when we were before,” he said.
