Rotorua's Kirsty Gerlach can still laugh.

At times it may be through tears but it is a contagious laugh, one that allows a glimpse of the formidable woman she is, and not of the disease that is progressively killing her.

Two months ago, and after 18 months of subtle signs that something wasn't quite right, Gerlach was diagnosed with the most aggressive form of motor neurone disease - bulbar palsy - and left in no doubt she would die.

"The first thing I noticed was a numbing sensation in my tongue," Gerlach said. "This was followed by a strange sort of obstruction in my throat and a difficulty in swallowing."


Working full time as an audiologist, a 33-year-occupation, and maintaining a busy lifestyle, she brushed the symptoms off. Then came the fatigue and the dramatic weight loss.

"There was a lot going on in my life, at the time my father was in the process of dying, so I put it all down to stress."

In an attempt to boost energy levels, Gerlach cut out sugar, bread and dairy and promptly lost 10kg.

"I thought it was the most wonderful thing," she laughed. But friends and family were concerned and urged her to see a neurologist.

Tests done in May did not show signs of the disease, leaving the neurologist scratching her head. Gerlach was told her symptoms could be as the result of a viral infection and a second appointment scheduled for six months down the track.

"The dread I felt at that time could not be explained."

Within the five months following the appointment, Gerlach had to take unpaid leave from her job as her speech became progressively worse and patients were unable to understand what she was saying. Fatigue had also become overwhelming.

"Nothing was getting better so, once again, friends and family urged me to go back."


This time the tests were positive for motor neurone. "I had two of my four children and my sister with me and the moment was profound. I knew I was in trouble but the confirmation of something I had suspected came almost as a relief."

From that moment on, any conversation with a specialist has been about dying.

"There is no cure for motor neurone. I take a pill in the morning and one in the afternoon to delay the progression of the disease, the experts tell me it may give me an additional three months."

Bulbar palsy sufferers have a life expectancy of between six months and three years from the onset of the first symptoms. "Doctors are talking in months not years."

Gerlach says she is not in the least bit angry. "I am a Christian and within that, have a framework of knowing my life is in God's hands. I don't feel angry, I don't feel fear, I almost feel an anticipation of what is to come.

"Firstly, if God says he works all things together for the good for his children, then there must be something good to come out of this experience. I am always looking for the good in each day and I always find it.

"Secondly, of course, is the anticipation of heaven. There is nothing sad about that.

"The only sadness I have is that I will not be here for my children and I am preparing for that as best as I can. No mother wants to do that.

"But I would be a liar to say I do not fear the prospect of becoming immobile and struggling to breathe."

In what she describes as a sacrifice of love Gerlach's son, who is a junior doctor, has taken six months of unpaid leave from his medical career to be with his mother.

She is sharing her story to raise awareness about motor neurone and also to tell people in the Rotorua community who know her.

"I was born in Te Puke, my father was a GP there, but we shifted to Rotorua when I was 9. I lived in America for 20 years but we moved back in 2002 and I had an audiology business in Rotorua from 2005 to 2014. I also ran the audiology department at the hospital for some time so there are a few people who know me."

Because bulbar palsy first strikes the muscles used for talking, chewing and swallowing, a sufferer can still walk, drive and be independent. "I'm just half the person I used to be," she laughs.

But the disease has resulted in several emotional moments as she has gone about her day. "I run into people I know and they ask where I've been and whether I'm now a lady of leisure. Some say they've heard I am ill.

"When I tell them the diagnosis, some cry, some hug me and others say they will pray for me. Hopefully this story will help prepare those I know and lessen the shock."

She also hopes a motor neurone support group in Rotorua will be formed. According to the Motor Neurone Association of New Zealand, there are currently 10 people in Rotorua with the disease. At any one time in New Zealand, about 300 people are living with motor neurone.

Tomorrow Walks 2 D'Feet MND are being held all over New Zealand as the main annual fundraiser for MND New Zealand. Half of the funds raised will go towards supporting motor neurone disease research in New Zealand.

One will be held at Tauranga's Fergusson Park at 10.30am and another at the Taupo Bowling Club from 10am.

What is Motor Neurone Disease?

Motor Neurone Disease (MND) is the name of a group of diseases that cause the death of nerve cells (neurones) that control the muscles that enable us to move, speak, swallow and breathe.

With no nerves to activate them, these muscles gradually weaken and waste away. This causes progressive loss of mobility in the limbs and difficulties with speech, swallowing and breathing. The progression varies significantly from person to person.