‘It’s getting harder’: MP Emma Vulin opens up about her battle with insidious motor neurone disease

Pakenham MP Emma Vulin has opened up for the first time about her battle with “the Beast”, motor neurone disease, and says while sometimes things get overwhelming, “there’s still so much stuff to be done”.

Labor Pakenham MP Emma Vulin is speaking out publicly for the first time since her MND diagnosis and the impact it’s having on her life. Picture: David Smith

It’s rare to see Emma Vulin without a smile on her face.

But occasionally things do become too much and she can’t help but “burst into tears”.

Often, it happens at what she describes as “the worst possible times”.

Like recently, when she was in the local news agency buying cards for her 17-year-old daughter and 15-year-old son.

“I decided to go and buy them 18th, 21st and wedding cards,” she said.

“That was really emotional … The worker asked if I had twins, and I said ‘no, I’m terminal’. I was with my sister and we both burst into tears.”

Emma wrote cards for her childrens’ 18th and 21st birthdays, as well as their weddings. Picture: David Smith

Emma Vulin – the MP representing the seat of Pakenham in the Victorian parliament – was diagnosed with the insidious Motor Neurone Disease (MND) in April this year.

MND is a debilitating condition that progressively damages the nervous system and can affect how a person walks, talks, eats, drinks and breathes. There is currently no cure for the disease.

Opening up for the first time about her battle with the “Beast”, the 44-year-old said the disease was rapidly taking over her body.

“It’s getting harder, it really is. I’d like to pretend that everything is absolutely fine but I would be lying if I said that,” she said.

Doctors say it’s impossible to determine how long a person with MND will live because it affects people differently.

Emma concedes it’s unlikely that she will be able to fight the disease as long as MND crusader Neale Daniher, who has been battling the illness since 2013.

“They have said that I have a different type of Motor Neurone Disease than the likes of Neale who has gone on for many years. He’s quite incredible, but I have a different type so mine is quicker. It’s not the quickest type but it’s definitely not one that I’m going to be around for a decade,” she said.

“They’re saying to me they absolutely can’t put a number on it but to be prepared that it’s not a long one, and so we all need to be prepared as a family and get things sorted.”

Emma’s condition has been deteriorating more rapidly than she thought it would. Picture: David Smith

Just five months since diagnosis, the disease has impacted Emma’s ability to use her hands, and now her legs are also starting to deteriorate.

She can no longer crouch, and stairs are becoming difficult, which has forced her to start crawling upstairs at home on bad days.

“There’s all these confronting things that happen regularly which makes me think ‘oh gosh, how fast is it going to progress’,” she said.

“Unfortunately it’s showing weakness in my left arm. My hand feels useless and my upper legs are starting to suffer, so stairs are becoming hard.

“My partner, Matt, will often have to help me get dressed or zip up shoes or put a bra on. I can’t pick up a pot from the stove or really help with the dishes because things slip out of my hand.”

It started with pain in her fingers, which progressed to numbness in her wrist and hands before eventually leading to shoulder and arm pain.

And so began the months-long process of misdiagnosis after misdiagnosis.

“I knew something was happening. I didn’t think it was that severe,” she said.

There is no single diagnostic test for MND, and usually other procedures may be used to rule out other possible causes of symptoms.

Her specialist suspected something unusual was going on, puzzled at how a woman in her early 40s – who’s not a tradie – had developed carpal tunnel in both hands.

They presumed her ulnar nerve – which helps move your forearm, hand and certain fingers – may have been playing up.

She said she will serve as Pakenham’s MP until her body cannot support her any longer. Picture: David Smith

“Right before we were going for surgery to fix my ulnar nerve, another neurologist noticed my hand was wasting and clawing,” she said.

“I started panicking … I think in my mind I thought I had MS.”

When told it was likely MND, Emma called her family – including her children Sienna and Sage – together.

Initially – in true Emma style – she leapt into mum mode and turned her attention to her loved ones, putting her own health battle secondary.

“In my mind I thought – ‘I need to make sure the kids are sorted with their school, I need to make sure my partner has access to bank accounts. I was starting to think about all the practical things – I need to check my will, I need to do my funeral,” she said.

“That was really hard on people because they were saying ‘why are you already doing this?’ And I said I would feel better if I was better organised because at the moment I’m panicking.”

Her official diagnosis came on Thursday April 11. She called Premier Jacinta Allan that night and publicly announced her illness on the Sunday night.

Behind the scenes, Emma was also dealing with the added stresses of caring for two unwell parents – her father was diagnosed with a terminal illness on the same day as her, while her mother has been bedridden for the past 15 weeks.

Emma’s first concern was for her children. Picture: David Smith

All the while, she continues to battle the effects from a stroke she suffered in 2016, when she was just 36.

“With the stroke I was showing improvement week after week whereas this is the opposite. With this, each week I see a decline,” she said.

Despite that, Emma – a CFA volunteer and previously an electorate officer and vet nurse – has kept up her duties as the Member for Pakenham, attending to constituents, community meetings, parliament and other engagements.

She’s vowed to continue in the role until her body decides it can no longer serve her beloved community.

“I’m really, really honoured to have this job. I absolutely love my community,” she said.

“I can stay at home and cry and that’s what I’d do. But I really love being in my community … there’s still so much stuff to be done.

“While I have my voice and while I have my ability to fight, I absolutely want to continue to do the job that I can.”

Originally published as ‘It’s getting harder’: MP Emma Vulin opens up about her battle with insidious motor neurone disease