"It's a hideous disease."
Lana Hook, organiser of this weekend's Walk 2 D'Feet Motor Neurone Disease march in Whanganui, would know. She watched her mother die of motor neurone disease over the space of five years.
Her mother died in December 2015, aged 64.
"It took a long time for her to be diagnosed, and by then she was slurring her words and had trouble swallowing - she had to eat really soft food. Then she gradually lost her ability to walk or even move. She was bedridden for the last eight months of her life," Mrs Hook said.
"But people with motor neurone disease don't lose their minds. It's a hideous disease."
Mrs Hook will be taking part in Walk 2 D'Feet Motor Neurone Disease in honour of her mother.
The walk - held in Whanganui this year for the first time - will began at 10am on September 25, from the i-Site on Taupo Quay. Registration opens at 9am.
Mrs Hook said the walk is approximately 5km and is on flat terrain along the Whanganui River. Kids are welcome. The walk will be wheel-friendly for wheelchairs, prams and strollers. Leading the walk will be the West Coast Bombers roller derby team.
Participants can register on the day or on the website, http://walk2dfeetmnd.co.nz. It costs $15 per person, with half the money going to support Motor Neurone Disease in New Zealand, and the other half going to Motor Neurone Disease New Zealand to help it continue its work.
Walk 2 D'Feet marches will be held throughout New Zealand.