Being diagnosed with motor neurone disease came as a huge shock to Neil Dyson.

The second surprise came when he discovered how expensive living with the condition would be.

"We are absolutely being punished, for want of a better word, for being over the age of 65," Mr Dyson told AAP.

If the now 70-year-old had been diagnosed just a few years earlier, he would be entitled to almost $200,00 in extra government funding.

That's because those older than 65 can't qualify for the National Disability Insurance Scheme and instead receive My Aged Care financial support.

The Bendigo resident is grateful for everything he qualifies for but the cost of scans, medicines, gadgets and equipment quickly adds up.

His wife and carer Maree Stanley estimated they spent $28,000 on out-of-pocket costs in 2

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