"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."