When your life expectancy is severely cut short by a motor neurone disease (MND) diagnosis, time is of the essence.

Around 400 New Zealanders find themselves in this unenviable position every year (around 30 of whom will live in the Bay of Plenty). The Motor Neurone Disease New Zealand Charitable Trust is dedicated to supporting those people and their families by making sure they have everything they need – when they need it.

“There’s no treatment for MND as such,” explains Jeanette Tioke, the MND NZ Regional Support Advisor who looks after patients in the wider Bay of Plenty and Lakes districts. “So we are solutions focused and think holistically about what else is possible. What’s going to enhance your life at the moment? And how do we support that to happen?

“My role is primarily about visiting and interacting with people and their whānau that are living with MND. It’s about providing really practical support and connection with others. Anything that's life enhancing, really.”

Progressive Disease

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.

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.”

Crucial Support

Education is another key role the trust provides, working alongside families, GPs and other health professionals. “Because it’s such a small amount of people affected, GPs don’t often come across MND. And so part of my role is educating clinicians to understand the disease to help ensure patients with MND get the best chance of good interventions and get good support for the remainder of their lives.”

Social connections are also important to reduce feelings of isolation, and helping patients and their families to feel ‘seen’. “Visibility is huge. It’s about somebody’s value on this earth. It’s easy when someone becomes unwell for them to feel like a burden. And the wider whanau often don’t know how to support someone with MND. There’s anticipated grief happening and they’re not sure how to talk about it. We are here to support them all through that journey.”

Funding Boost

As a small charity, the MND NZ Charitable Trust receives very little public funding and instead relies on fundraising and grants. Tauranga’s Croquet Club hosted a ‘Cuppa Tea for MND’ event in July to help raise awareness and money at the same time.

BayTrust has provided $7500 to help fund Jeanette’s role in the region this year – funding which she is very grateful for.

“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 the support that BayTrust provides, people would be left quite isolated so this funding means everything.”