The House of Wellness

After losing her husband to motor neurone disease, Jane Simpson rediscovered laughter through Daniher’s Drive. This is her story of finding community and purpose in the fight against MND.

When motor neurone disease (MND) came for Jane Simpson’s husband Robert, it was merciless.

It began innocuously enough, with what seemed like an injury from a skiing accident in 2019 that left Robert with lingering pain and difficulty to perform simple tasks.

Unbeknown to them, this was simply a prelude.

Concealed behind countless misdiagnoses was “the beast”, MND, and a year would pass before a correct diagnosis.

“We persisted and pushed for answers,” Jane says, adding there’s no definitive test for MND, so it’s a slow process of elimination.

The drive home from the neurologist’s office after Robert was diagnosed was a silent one.

“We had just received a terminal diagnosis for which there is no hope. We just held hands,” Jane recalls.

Ahead of them was a road neither could possibly predict.

When her husband was diagnosed with MND, Jane Simpson was thrust into an unimaginable role. Image: Supplied

A difficult journey

After diagnosis, the progression of the disease was swift, robbing Robert of his ability to perform everyday tasks while plunging Jane into the role of caregiver.

“I learned very quickly how to provide care for him — from showering him to dressing him, putting him to bed, moving his bowels, learning how to feed him, clearing his throat when he was choking — absolutely everything,” Jane says.

Small triumphs

MND does not diminish mental acuity and, as a heritage architect, Robert had always used his hands, body and mind to draw, design, build and make things.

While MND took hold of his body it did not dull his ability to think.

“He was so bored,” Jane recalls. But Robert refused to give in to MND.

“He loved being an architect and he wanted to finish his final architectural commission. He’d been working on it for six years.

"When he was in bed, dying, he said to me, ‘Have they finished the house?’ And that morning they happened to lay the grass, which meant it was finished. I was able to show him the photos and he just said, ‘I did it, I did it’ and I replied, ‘Yes darling, you did it’.”

Robert passed away just weeks shy of the couple’s 30th wedding anniversary, 10 months after being diagnosed with MND.

Jane is continuing her husband's fight by raising awareness and funds for MND. Image: Supplied

Finding hope through heartache

Determined to make a difference, Jane threw herself into advocacy and support for MND.

She volunteered, led lived-experience groups, started a podcast and took part in Daniher’s Drive, an annual road trip bringing together those impacted by MND to raise awareness and funds for research.

But Daniher’s Drive quickly became more than just a fundraiser for Jane.

Joining the Shady Ladies team last year for a trip through rural Victoria, she found solace and camaraderie among fellow fighters — and her way back to joy again.

“When I was on the drive, I realised I hadn’t enjoyed myself for years,” she says.

“And I was actually laughing and thought, ‘Wow, I haven’t done this for years’. You can’t imagine it — because we’re all together because of MND — but we just laughed and laughed. Honestly, it was the best fun I’ve had in years.”

A driving force

Daniher’s Drive not only raises much-needed funds for MND research but brings the sense of camaraderie Jane experienced to regional areas where MND patients often feel isolated.

“What’s really special about Daniher’s Drive is getting out into the community and hearing people’s stories,” Jane shares.

“When you bring people together who have only one outcome, they can either go into their shell or they can embrace one another. The majority embrace the community and it’s just amazing.”

As Jane prepares to join the Shady Ladies again on this year’s drive, she feels Robert guiding her forward, urging her to continue the fight.

“He’d love what I’m doing and he’d be so proud of me,” she says. 

United by MND

FightMND’s epic annual road trip to raise awareness and funds for the fight against MND will be held from October 10-13.

Form a team with your friends and family, pick your fundraising car and contribute to the fight against MND while having fun.

This year’s four-day road trip travels through Bendigo, Warrnambool and Lorne, in Victoria, and includes community township visits, fun night events and the opportunity to meet new people, many who have been affected by MND. 

This article originally appeared in print, and on The House of Wellness.