Motor neurone disease is a cruel condition that afflicts dozens of Bay of Plenty residents each year – now BayTrust is providing financial support to help sufferers make the most of life before their bodies shut down.

Motor Neurone Disease New Zealand Charitable Trust will receive $7500 to help fund their Bay of Plenty-based Support Advisor, Jeanette Tioke.

She works with patients, their families, GPs and other health professionals to help those with MND get the best medical care, equipment and emotional support following diagnosis.

MND mainly affects people over the age of 60 and life expectancy can be as little as 2-5 years as symptoms often progress rapidly.

Motor neurons deteriorate and die, causing muscles to weaken which eventually leads to paralysis and the inability to move, talk, swallow or breathe.

Former All Black Norm Hewitt died of MND recently, as did former Rotorua Trust manager Tony Gill.

“My role is primarily about visiting and interacting with people and their families that are living with MND,” Jeanette explains.

Motor Neurone Disease New Zealand - Jeanette Support Advisor. Photo supplied.

“It’s about providing really practical support and connection with others. Anything that’s life enhancing, really.

“I’m committed to helping people live a good life and getting what they need, when they need it. And also thinking beyond that - lifting expectations, making everything count.

“Without this support that BayTrust is providing, people would be left quite isolated so this funding means everything.”

Jeanette says initial symptoms can include muscle weakness and people starting to drop things.

“Possibly slurring, swallowing, chewing difficulty, fatigue… sometimes there are cognitive or respiratory changes.

“It often just starts with people having little falls or suddenly the dexterity of their hands starts to change, but everything else is okay. It builds up over time.

“There’s no one test as such and that’s the nature of a neurological condition. It's such a complex disease that affects multiple areas and has multiple symptoms.”

With the right equipment and therapies in place, people can maintain their quality of life and remain mobile as long as possible.

The trust works to help connect patients with an appropriate team of clinicians to help monitor their health and organise whatever support is needed.

Powered wheelchairs, ramps, grip and holding aids, communication technology, sit-to-stand chairs, ventilators and feeding tubes may all be eventually required, and MND Support Advisors like Jeanette can help sort out funding applications and access equipment as quickly as possible so people are not languishing on DHB waiting lists.

“It can be a lengthy process so the quicker we can start the ball rolling, the better as MND patients don’t have the luxury of time.”

BayTrust CEO Alastair Rhodes says Motor Neurone Disease New Zealand Charitable Trust is the sole provider of support and information to MND sufferers in Aotearoa.

“They are a small charity but doing vital work, helping people access physiotherapists, speech therapists, occupational therapists, counselling, and all the equipment necessary to make life more comfortable.

“The emotional support that Jeanette provides to Bay of Plenty families cannot be underestimated. They are less isolated and more informed thanks to her face-to-face visits.

“MND NZ receive next to no government funding so we’re pleased to be able to help support them financially so Jeanette, in turn, can keep supporting our community.”