For Maria Minnaard, the first sign something was wrong was in 1979 when her son noticed she was dragging her foot.
She was diagnosed with motor neurone disease (MND) four years later. She says one of the worst things about the disease is not being able to talk.
"They [people] think I'm deaf and dumb," she said.
Ms Minnaard uses a Lightwriter to talk, which has some phrases programmed such as "Hello, how are you" and "thank you".
She also uses email and text messaging to stay in contact with friends and family.
Ms Minnaard does Reiki with some of her fellow Dutch friends, which she says helps both mentally and physically. She said when she laughed it eased the pain.
Her friend and previous carer Susie Thomas said because the disease offered itself in so many ways to different people it could be difficult to diagnose.
She said Ms Minnaard had a slow form of the disease, and so the symptoms were gradual.
Mrs Thomas said Ms Minnaard was "an amazing lady" to have a disability such as MND but still have a "huge" smile on her face.
"She commands an incredible amount of self respect and people love her."
Ms Minnaard, who turns 84 tomorrow, lost her speech 34 years ago - "a long time not being able to talk", Mrs Thomas said. She said Ms Minnaard was reliant on caregivers and was currently with the Enliven Rotorua service.
The home carers came to her house at 6.30am, sometimes did house work throughout the day, and were also there at midday and in the evening to help her eat and get ready for bed, Mrs Thomas said.
Mrs Thomas said Motor Neurone Disease Global Awareness Day was important so people knew about the disease and how those with it were affected.
The early symptoms were what people needed to know about, as the initial signs could be subtle, she said.
She said helping those with the disease maintain their quality of life was important.
"I think people need to just be aware of anyone who is not as well off as they are, and put themselves in that situation and say 'how can I help?'"
It was also important people knew there were support systems, such as a field officer who was associated with the Bay of Plenty branch of the MND Association NZ, she said.
- Visit www.mnda.org.nz for more information on MND.
Motor neurone disease (MND):
• MND is the name given to a group of diseases that destroy the nerve cells which control your muscles and can affect anyone.
• With no nerves to activate them, muscles used to walk, talk, hug, hold, speak and eat gradually stop working.
• The most common type is amyotrophic lateral sclerosis (ALS).
• This year about 100 people in New Zealand will die from MND and 100 will be diagnosed.
• Most will die within two to four years.
• Stumbling due to weakness of the leg muscles.
• Difficulty holding objects due to weakness of the hand muscles.
• Slurring of speech or swallowing difficulties due to weakness of the tongue and throat muscles.
• Cramps and muscle twitching are also common.