“I just want to get on with living.”

Lynnie’s cat Roxy enjoying a cuddle.

"There's no point getting upset about dying, I just want to get on with living," says Lynnie.

"To some people, it feels like I’m giving in, but it's acceptance. Of course, there are tough days, but I try not to live in fear. Instead, I focus on enjoying my loving husband, wine, and chocolate," she laughs.

Lynnie's speaking up before she loses the ability to, in the hope people get an insight into the 400 Kiwis living with MND – a neurological disease that leads to progressive muscle wasting and weakness because the nerve supply to the muscles is impaired. Eventually, the muscles that help us move, breathe, smile, speak, and swallow stop working.

"I don't want to mourn what I haven't had,” says Lynnie. “I still get excited by pulling on my socks – with the help of a tool, of course.”

Lynnie’s husband Mike follows closely with her wheelchair at Taranaki’s MND fundraiser.

Three people are diagnosed with MND every week. New Zealand has the highest rates worldwide, and experts are working hard to understand why.

Lynnie knows about the horrific side effects as her dad and aunty died of MND 35 years ago.

"When Dad was diagnosed, they told us it wasn't genetic, but in March 2024, I was struggling with pegs when hanging out the washing. Deep down, I knew something was wrong."

After pushing two GPs to send her for testing, Lynnie was eventually referred to a neurologist who diagnosed her with a rare gene that only 10% of MND people carry – one that also results in frontotemporal dementia.

"I've been fighting battles since my diagnosis to hold people to account,” Lynnie reflects.

“It can take eight months to get a diagnosis. Not having a clear path for tests and treatments is incredibly frustrating."

Associate Professor Emma Scotter, who heads her MND lab at the University of Auckland, met Lynnie and some of the other 16 Taranaki families affected last year.

As Taranaki has the highest rate of MND (with Nelson), the local support group invited GPs to a public seminar in the hope that symptoms would be recognised earlier.

“When I was diagnosed there was no way I wanted to see other people with motor neuron disease, but it’s been amazing,” says Lynnie.

“We’re all going through the same experience, so we don’t have to explain ourselves. It’s great to learn practical tips from each other.”

Lynnie’s life expectancy is up to five years, but with the support of five specialists, she’s doing all she can.

"That’s the cruelty of the disease, you just don’t know what the future brings. If you learn to breathe properly, you can extend your life by up to a year!"

Baking is what Lynnie misses the most.

"I get cramping in my hand and can't hold a spoon anymore. My muscles are wasting down my left side, so I get twitching spasms. I'm not in pain, but I get tired and worry about falling over, as I won't be able to get up."

However, Lynnie is adamant she’ll hold onto her dignity.

"I'm a bit of a princess – I love wearing jewellery and getting my nails and hair done. Most people with motor neuron end up wearing track pants as they are easy to get on, but I’m determined to stay in my normal clothes for as long as I can!”

Lynnie has planned her final wishes for her life celebration service and intends to host a living funeral while she’s well enough when the time comes.

"I love a good party, so I want to celebrate with loved ones."

Lynnie is donating her brain to the Neurological Foundation Human Brain Bank with the hope of better treatment and, ultimately, a cure.

Her parting piece of advice?

"Don't live your life with regret. If you make a call, stick with it, and don't blame others if something goes wrong. You always have a choice, so get on with it!"

Listen to Lynnie's podcast https://leavinglegacies.co.nz/pages/podcast