Living with MND eased by support network

AN Axedale man diagnosed with motor neurone disease (MND) in February is determined to help others living with the disease in Victoria get the help they need.

Ivor Godsell, 65, said it was a kick in the guts to him and his wife to receive the news barely three months ago, with where and how to access information unclear.

“We’ve always been pretty active and we’ve always incorporated the family in pretty much everything we’ve done,” he said.

“Not knowing what the extent of the diagnosis was and not knowing a great deal about exactly what MND was, my kids were asking questions and I just couldn’t answer them.

“People in our network were exactly the same as me.”

He said he found out about specialist support provider MND Victoria after being signed up by his daughter Penny to take part in last weekend’s Great MND Relay at Lakeside Stadium in Albert Park.

“A few months ago we had no idea that these people were even available,” he said.

“I didn’t know what the difference was between MND Victoria and Fight MND – now I know there is a distinct difference.

“MND Victoria are the ones that support the people affected and their carers and support teams.”

He said while he has only had a very short time with the not-for-profit organisation, the help that has been offered has been overwhelming and uplifting at the same time.

“I’ve gone from having around about four appointments a year with medical people to about four a week – I’ve never had that necessity before,” he said.

“To find all these people who don’t know me from a bar of soap, they appear to be coming out of the woodwork – they’re all so enthusiastic, they all want to be part of my life now.

“To know that there are so many out there that actually give a damn, I can’t recommend them highly enough.

“I never even dreamt of the genuine empathy that these people have, they’re very special in my opinion.”

Find out more at mnd.org.au