Border Community Ice Bucket Challenge | Care a rewarding challenge

MORE people are battling motor neurone disease, with 30 sufferers in our region, says MND Victoria regional advisor Sue Sweeney.

When Ms Sweeney started working with the organisation three years ago, there were about 250 people in Victoria with the disease.

That figure has grown to 360 people, and the cause remains a mystery.

“We’re not sure why that is,” Ms Sweeney said.

“It may be that people are living longer with motor neurone disease, an older population, or there being more referrals because more people are aware of the disease.”

Ms Sweeney, who has a background in palliative care nursing, links sufferers and their families with medical and support services.

Caring for people with the disease is very challenging, she said.

“It’s difficult, it’s hard work, it’s emotional,” she said.

“But I enjoy going on the journey with them and trying to get them as much help as possible to make their lives as easy as can be.”

Patients require a high level of support and equipment like electric wheelchairs, hospital beds and hoists.

MND Victoria recently invested significant money into equipment, but there are still long waiting lists, which is why Ms Sweeney believes the ice bucket challenge is so important.

“There’s been a huge amount of money generated, it’s an amount we haven’t seen before,” she said.

“It’s like nothing we’ve ever been able to generate ourselves, and it’s taken something as simple as throwing a bucket of ice water over your head to get the information out there.

“It’s given people hope, with the money going into research.

“Plus, it’s a fun thing for people with the disease to do, and there really isn’t much fun in motor neurone disease.”