It's a game of genetic brinkmanship, genetic roulette, a game of extreme odds – and there's no earthly control.

Michelle Knox with her breathing machine. Photo: Supplied.

But from beneath her BiPAP – the breathing machine which has become Tauranga woman Michelle Knox's lifeline – she is philosophical.

'I've often thought I would rather have my family with the ridiculously terrible bad genetics that we carry than a perfect genetic line that's dysfunctional.”

She refers to a rogue gene, a gene with an MND-related mutation that's decimated her family – her uncle, father, sister and now her. MND is Motor Neurone Disease – that insidious progressive degenerative neurological disorder.

It leads to the death of the nerve cells – the neurones – that enable us to move, speak, breathe and swallow.

MND is terminal, there is no effective treatment. Michelle's mind remains ever alert, while her body is incrementally closing down.

'I could still do my job but my body won't do what I tell it. You don't lose skills or knowledge – you just lose the ability to tell your hand where to go.”

First her father, Jim Knox, died in 1998 after living with MND for 10 years.

Then Michelle's 35-year-old sister Kim – she died in 2005 after a two-year struggle with MND.

And now 49-year-old Michelle. She says she's two years through a three-year sentence – that's generally the timeframe from diagnosis to the end.

'Sometime in the next month to six months I will pass away. With my breathing it's assumed it'll be months, not years.”

Michelle is being dramatic, but she's not. She's had a lot of time to work through her emotions.

'I am still ordering pre-publish books on Kindle so I have to stay alive to read them.”

Only about 10 per cent of MND is familial – it's affected more than one person in a family. 'We didn't figure it was familial or hereditary until Kim got sick.”

If a parent – a parent such as Jim Knox – has an MND-related gene mutation then each of his children has a 50/50 chance of inheriting that mutation. And so far the odds have been stacked and the reality has been cruel.

What about her two male siblings?

'They are statistically fine. They are planning as if they won't get it.”

This chartered accountant who deals with the certainty of spreadsheets doesn't want to meddle with uncertainty or fate.

But she has never walked away from it.

As a partner in an accountancy practice, Michelle felt duty-bound to advise her colleagues about her demons – that she might get MND and might die.

'You plan your life as if you will live to 100, as if MND won't happen.” But at the same time there's pragmatism.

'But you make sure you make the most of the opportunities that come your way.”

That was Michelle's modus operandi – she seized opportunity. She left school, worked for an accountant, studied as an accountant and then bought into the company. Life was on track and career-focused.

Then one day in April 2013, something positively weird happened – something called ‘drop foot'.

'You can't lift your foot, your toes, to walk. You stumble and trip,” says Michelle. There were alarms bells. 'With my family history anything to do with not being able to move limbs makes you wonder, makes you anxious.”

‘Drop foot' can be remedied with something as simple as an orthotic. But in Michelle's case it was more symptomatic, more ominous.

'You go through a lot of emotions waiting for the neurologists. And you assume the worst.”

And with justification. Because familial MND was continuing to weave its evil.

'I was pissed off when I was diagnosed. Mmmm, more resigned than anything I suppose,” says Michelle. 'And after watching my father die, and after caring for my dying sister, you can either focus on what you have lost or you can focus on what you still have. I chose the latter.”

What she still has is TV. 'I love TV and movies.”

She still has books. 'One every couple of days; romance, sci-fi, paranormal, Christian.”

She still has her friends. 'They have blown me away with their time and effort.”

And she has her Christianity. 'Nothing like a terminal illness to focus your faith.”

And when she eventually passes 'no time soon” she'll going 'somewhere and for something better than this”.

What she doesn't have is mobility. 'If you can't pay for anything or can't feed yourself, you lose the incentive to go out. And I can't do anything for myself anymore.”

And for an astute, driven and fiercely independent individual that must be demeaning. You might feel her frustration but she doesn't want to show it.

Even from her position of helplessness on that chair, that bed which is her life now, she's still in control – still asserting herself. She's impressive.

'There are worse ways to die.” More unbounded positivity from Michelle. 'Like cancer. It's painful with extreme treatments which may or may not work. And Alzheimer's disease removes you from those you love. So life could be worse.”

But from the outside looking in, it couldn't be much worse. In three months Jim Knox died, he lost his wife and the children lost their mother to breast cancer.

'There's a lot of tragedy in this lot.”

As you flick through this story, Michelle will be online posting staff timesheets, tracking the company statistics or tidying business as outgoing treasurer for the National Council for MND.

The head will be fired up, the body will be in shutdown.

There is still business to be done and still life to be lived.

How can you help:

There's a good reason Michelle shared her story with The Weekend Sun – to turn some dollars for the MND Association of New Zealand, which is in charge of advocacy and support of people living with MND and their carers.

On Sunday, September 20, Michelle invites Tauranga to step out so it can continue its good work.

It's holding a Walk 2 D'Feet MND, a 3.2km walk starting at Memorial Park and heading into town, down Devonport Rd to the roundabout and back again.

Similar walks will be held in five other cities – Auckland, Hamilton, Wellington, Christchurch and Dunedin.

Go to walk2dfeetmnd.co.nz to register, or register on the day. And walkers can gain sponsorship for their act here.