But don't label him as "that guy with MND". Like everyone, he's so much more. Businessman, wannabe-philanthropist, ex-sportsman, father, friend, mayoral candidate, marathon runner. Many know him as a former real estate agent, or a handy rugby and soccer player, but these days the 54-year-old occupies himself with his charitable ventures and business interests.
He and son Josh brought international pre-school programme HIPPY, which is aimed at breaking the poverty cycle through pre-school education, to Taupo earlier this year, guaranteeing the shortfall of $15,000 for the first year and forming the HIPPY Taupo Charitable Trust. HIPPY Taupo now has 35 families enrolled, a full-time co-ordinator and two parents as part-time tutors. It is the only one of the 32 HIPPY sites nationally to be run by private individuals on a voluntary basis and it fits with Tony's personal philosophy that education is the most successful way of improving any society long-term.
"It's a full package," says Tony of HIPPY. "The child is teaching the parent as much as the parent is teaching the child."
Earlier this year Tony ran for mayor even though he knew that his health would put people off voting for him.
"I had a couple of close friends say 'look Tony, I like you but I can't vote for you', and that was no big shock. I really like having friends that can be so honest."
But Tony put his name forward for the mayoralty not to win, but to communicate the three main aims he has for Taupo - to embrace the district's smaller size as part of the reason people come here; to do whatever we can to the highest quality we can manage; and establishing clear-cut identities for the district's three towns.
"We have a unique chance to be a 'pure' haven, yet we're not grasping it," Tony says.
"Such a haven would be an even better place to live and would draw more visitors. Queenstown is known internationally. We aren't - but we could be.
"I've lived in Taupo for 30 years and have had this impression from day one.
"Yet we keep on looking for 'big industry' growth which I think is wrong and plain dumb given our natural surroundings."
Tony's career has included running a garden centre, book shops, an office stationery supply outlet, a print firm and two real estate agencies.
His loose life plan was to become financially independent by 50 so that he could spend the second half of his life helping improve the world.
When it was time to put the second half plan into action, he was instead rocked by the diagnosis of motor neurone disease.
He headed overseas to Asia, the Middle East and Africa while his health still allowed and made a point of investigating aid projects in the Third World.
As a long-time World Vision sponsor, he wanted to see for himself how much aid got through.
He volunteered in orphanages in Tanzania and Malawi and saw that while some orphanages were well run, locals pocketed donations at others. In addition, international charities "consume so much of what is donated, by way of large salaries and expense accounts".
So he set up a website, orphanagesmalawi.org, which receives around 40 hits a day and features contact details for orphanages Tony assessed as being run in the orphans' best interests. The website suggests ways people can help directly, by donating or purchasing an item an orphanage needs.
Tony acknowledges that while the only way to make a substantial lasting difference would be to stay and run an orphanage himself, he at least knows now which are legitimate and where children will benefit from donations. The website's aim is to effect "efficient charity", where 100 per cent of the money goes to the children who need it.
Tony says what really struck him when he was working in orphanages in Tanzania was the children's demeanour.
"Those kids were the happiest kids that I've ever seen ... would play together for like four hours and all you would hear around the orphanage for those four hours would be the squeals of delight as they found each other or tagged each other. And you come back here and you're seeing kids complaining about 'I want a bigger whatever'. It makes you realise happiness is relative."
As part of his battle against MND, Tony has been keeping as active as he can. He's always been keen on sport - he played rugby, was an international sevens referee, played soccer and cricket and coached children's sport.
Despite the running accident last year when Tony ended up in the shingle, he decided he should be using his ability to stumble for the good of others with MND.
So he entered the Rotorua half marathon, where he raised $3000 for MND research and awareness which gave him "an incredibly childish high".
Emboldened by his success, he tackled the Orewa half. However, in the intervening month his legs deteriorated so much that despite "flapping my arms everywhere and swinging my hips"he crossed the finish line behind walkers. His stiff-legged gait attracted the attention of paramedics, who bundled him into an ambulance, despite Tony's attempts, through his MND-affected speech, to convince them he was fine. They finally let him go, only for Tony to fall over twice in the shower afterwards, hitting his head both times. He decided it might be time to let the running go.
Tony says, MND is "a big pain in the butt", and the worst thing is the permanent sense of utter fatigue, "of being encased in some large globule of glue", which makes every day frustrating and a challenge.
He refuses to be bowed down, however. "When you look at the bigger picture, really, I'm lucky. There are plenty of people much worse off. On the day of my diagnosis I could've been hit by a truck while crossing the road. I think we're all lucky just to get a shot at life, each day is a bonus."
Tony says the challenge of MND is forcing himself to accept his slowly-descending levels of capability, but the biggest hurdle, when or if it affects his independence, still lies ahead.
"My ideal is to smile to the (whenever) end; and have as little as possible negative emotional impact on anyone who cares for me. As a dad, the least you want to be for your kids is a rock. I'm trying hard to be that rock."