MND patient Neil Dyson says living with the devastating terminal illness is extremely expensive. Photo: PR IMAGE PHOTO

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

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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.

Neil Dyson says the cost of scans, medicines,

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