Family life with motor neurone disease

Michael Cockroft was a 33-year-old dad who'd just built a white picket fence around his young family's Wellington home when he was diagnosed with motor neurone disease – a fatal degenerative condition with no known cure.

Talking is hard work for Michael, whose voice has deteriorated due to MND, but via computer software, he was able to speak to Jesse Mulligan alongside his wife Lara.

It was 2019 when Michael, an architecture graduate, first noticed something wrong with one of his hands.

"I had literally just finished building a 53-metre-long white picket fence around our home when I started having a bit of trouble with my hand, I started to have cramp and tingling in my right hand with a bit of strength loss.

"At the time, given my line of work and with a bit of help from Dr Google, I diagnosed myself with repetitive strain injury from using the keyboard and mouse."

Although Michael's GP treated him for RSI, the hand trouble kept getting worse.

Facing a six-month wait for further testing, he decided to see a private neurologist.

"That was the best 500 bucks I have ever spent. Going private got me an appointment within a fortnight. After I explained all my symptoms and the private neurologist examined me. I am pretty sure he knew what it was, but would not say. I did start to wonder if it was something serious."

A second test involved inserting a needle with a tiny microphone into Michael's muscles.

"That one was uncomfortable. They put needles in my arms, legs, feet, spine, even my neck and under my chin. I thought that one under my chin was the worst until the end when the doctor said, 'Now if you feel breathless at all tonight you need to call an ambulance because there is a small chance that one I put in near your spine may have punctured one of your lungs'."

To rule out cancer, an MRI was also conducted, but Michael says in the days after he was actually hoping for that diagnosis.

"I knew the survival rates of cancer were far better than that of MND. After the MRI came back clear, the doctor would still not confirm a diagnosis. Because of my age, I think the doctor wanted to be sure."

On Valentine's Day 2020, Michael and his wife Lara attended a meeting with his doctor and a team of neurologists who had reviewed his case.

That day, 12 months after his first symptoms, the couple finally learnt that Michael had motor neurone disease.

With the sum of money allocated for his care, he employs Lara: "She is pretty special, and I am lucky to have her."

Although various treatments are available to Michael, he says there is much that helps with his condition.

The best thing on offer is time with his daughter Charlie-Louise.

"She is the reason I make Lara get me out of bed every day … I am the one that does the school drop off, her and I ride shotgun on my wheelchair to school each day."

Michael says his main frustrations with MND come from not being able to play with his daughter and read her stories, but he does get to ride in his wheelchair to the park and watch her play.

Although MND is "a bit shit", there is still life after diagnosis, he says: "Haha, you can even get on the radio."

Lara is hopeful that speaking on RNZ will help inform New Zealanders about a "really horrible disease" that may not be on their radar.

She tells Jesse Mulligan the months after Michael's diagnosis were the most stressful time of her life, but the family have now settled into a rhythm and created quite a happy life.

"It's not ideal in many senses but I suppose you just got to make the best of it. And we kind of just work through the day and get done what needs to be done.  I probably wouldn't have anyone else doing [the caring] … I mean, that's just what you do for the person you love."

Michael and Lara have relocated from Wellington to Invercargill partly to be near Michael's family and especially his "amazing" mother.

"She always comes in and pretty much takes over with anything that he needs and gives me a bit of a break and just kind of focus on our daughter or whatever."

The role of family carer is a "marathon" job you get thrown into and have to learn along the way, she says.

"I wish looking back now that I had asked for a little bit of support. That really took a long time because we're young and we were independent ... I took a long time to learn to just ask for help. So I wish I had done that a lot sooner."

It is complex to juggle raising a young child and also be her relatively young husband's main carer, Lara says.

"It's kind of weird because you go through all those steps of grieving … For those first six months, it was a complete shock. Our life got turned upside down, we moved, we renovated the house to make it wheelchair-accessible for Michael … we had all these huge changes. During that period, it was really hard."

The average age of an MND diagnosis is 65, Lara says, and it took everyone quite a while to get their heads around Michael receiving his diagnosis at such a young age.

Now she has reached a level of acceptance.

"We have to just make the best of a bad situation and live our lives as best as possible, but yeah, we've definitely been to those dark places for sure.

"Unfortunately, in life, you kind of get what you get, and you kind of have to deal with it. We do have moments where it's all very overwhelming … we have moments where it's very confronting, like when he goes to the hospital, when he's given the desk talk by the doctors … those moments are really confronting.

"But you can still find moments of joy and hope and despite all of that, you can still have a really a nice life.

"I'm amazed by Michael's mindset and positivity and that helps for me, as well. I suppose it's proven to me that you can just get through these things, despite the tragedy of it. There's hope in every situation."

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