Kirsty Gerlach's motto is "one day at a time".
She's frank about the fact tomorrow could be her last but she's taking each day as it comes.
"I could have pneumonia and that will kill me, I could choke on something any day, or I could eventually get weaker and weaker."
A year ago today the Rotorua woman was diagnosed with the most aggressive form of motor neurone disease - bulbar palsy.
Bulbar palsy sufferers progressively lose their ability to speak, to swallow and eventually to breathe. The life expectancy is between six months and three years from onset of the first symptoms.
For Gerlach it's been a year since her diagnosis but she first noticed signs something was wrong 18 months before that.
She brushed the symptoms off as being down to stress, then became more fatigued and lost weight.
Tests in May 2017 found nothing wrong, but within months Gerlach had to leave work as her speech and fatigue became progressively worse.
On September 13, 2017 she got the official diagnosis and everything changed.
"After diagnosis life becomes very clear when you know how long is left. All the small worries disappear and the important things are relationships and beauty, and they are what you focus on," Gerlach said.
"They said to anticipate months not years. As I hit the one-year mark I am very grateful.
"My days are in God's hands."
In the 12 months since her diagnosis, Gerlach's speech has become more and more slurred, her breathing more difficult and she's become weaker. The disease has not yet affected her limbs.
In the months after her diagnosis Gerlach said she would have liked to have a support group in Rotorua. But she's changed her tune.
"It's such a sad thing. I'm in contact with two other women who have MND, one in the Coromandel and one in South Otago. That's been very nice but it's scary because when I don't hear from them I worry they have died.
"My husband says a support group would be too hard."
A normal month for Gerlach might include a visit to physicians, her GP, and osteopath, sleep specialist, occupational therapist or ear, nose and throat specialist.
They are all people Gerlach considers part of her team.
What is motor neurone disease?
• The name of a group of diseases which cause the death of the nerve cells that control the muscles that enable us to move, speak, swallow and breathe.
• Muscles gradually weaken and waste away causing progressive loss of mobility, speech difficulties and problems breathing and swallowing.
• In New Zealand more than 300 people are living with MND.
• Each week MND will cause the death of two people in New Zealand.
• Symptoms include muscle weakness or cramping, slurring of speech,