Ross Underwood has written The River Dancer - Living with Parkinson's Disease.
Looking back two and a half decades to when he was diagnosed as having Parkinson's disease, Ross Underwood believes he had two choices.
He could sit and wait to die, or he could live like there's no tomorrow.
For Ross, doing the first wasn't an option.
Last week Ross and his wife Lindy held a launch for The River Dancer - Living with Parkinson's Disease, the book Ross has written about his life, pre and post diagnosis.
Ross' message is simple: ''Life doesn't stop if you get Parkinson's disease.''
He says the book records his own personal journey, as everyone with the disease is different.
''Life doesn't stop, there's a lot you can do - that's the message of the book,'' says Lindy.
While writing the book, Ross says there were times things felt positive, and times they felt negative.
Among the many anecdotes is the story of him simply being unable to cross the road to get to a cafe for about 40 minutes, and the time his grandson, puzzled about why his poppa's head kept moving, held it and said: ''There, I can stop it Poppa.''
''You've got to laugh about things like that,'' says Lindy, ''and we are able to laugh about things like that.
''The book is lighthearted, but it's still there with a message that this is a bugger of a thing that doesn't go away, it's there and you've just got to keep fighting it.''
''I hope people get a good laugh out of it,'' says Ross.
A significant milestone on Ross' journey came in 2017 when he underwent deep brain stimulation (DBS) surgery. Only around 14 surgeries are done a year in New Zealand.
''They do it if the dyskinesia [the uncontrolled, convulsive movements that characterise the disease] gets too bad. Ross kept falling over and was having to crawl to bed,'' says Lindy.
The surgery involved inserting two probes into his brain. The procedure requires the patient to be awake as they need to be able to answer questions.
Now he wears a monitor that stimulates the creation of the neurotransmitter dopamine. Ross says the improvements following the procedure were amazing.
The idea to write the book came from family friend Karen Law.
''I don't know how we got onto it in the conversation, but Karen said 'you should write a book','' says Ross. ''I'd stopped work some time before that, so was at a little bit of a loose end.
''I went away and grabbed a piece of paper and wrote down a few thoughts and it carried on from there.''
That was around 12 years ago.
''I stopped and started it a few times - put it down for a while then come back to it.''
''He was too busy to be fair,'' says Lindy.
He began by making dairy entries about how he was feeling, and called it The River Dancer Diary. He wanted the book to be about both periods of his life - before and after his diagnosis.
''My life as a life is a little bit different to other people's, obviously,'' he says. ''To start with I had a really good run - things were going too well - but then something happened somewhere along the line.''
Ross' brother Des, who had written a family history, got on board and the brothers created a tradition of getting together on Tuesdays to progress the project.
''They were either here or out on the lake fishing and just chatting away - and it became book day Tuesdays,'' says Lindy, ''and that really got it along for a while.''
A very New Zealand story, the early part of the book tells of Ross' days shearing, travel, playing rugby, hunting and his do-it-yourself attitude.
Ross and Des had got as far as they could when, in January 2020, Lindy and Ross bumped into an old friend, Dennis Spence from Wellsford.
Dennis had also written books in the past and offered to help.
''From then on Ross would dictate to Dennis using a dictaphone. [Dennis] would do it all from up north and would collate it all. He came up with a few ideas but was very conscious of not changing what Ross had already written.''
Ross and Lindy have spoken to Parkinson's New Zealand and staff say the book will be a useful tool for them. The book sells for $35 with $5 of each sale going towards DBS research and development.
After last week's launch for family and friends, there will be a public launch at Te Puke Paper Plus tomorrow at 11.30am.
Sidebar:
The title of the book - The River Dancer - is a nod to one of the many nicknames Ross has had throughout his life.
It was given to him by his fellow fishers close to the Kaituna River mouth, where for many years he has been a regular whitebaiter.
Unfamiliar with the symptoms of the disease, they mistook his dyskinesia for dancing to music he was listening to through headphones.
After asking about the music he was listening to while whitebaiting, the other fishers told Ross they had already started calling him The River Dancer.