Troy Berry has lived with MND for the past 28 years, but hasn’t let the diagnosis stop him.
He’s been reliant on a positive attitude and staying as physically active as possible to help stave off the progression of the condition.
“All your independence eventually goes, and you just have to swallow that pill and deal with it. It’s like the weather - you plan for a nice picnic and look forward to it, and just deal with whatever happens on the day,” Troy said.
“A positive outlook and staying fit has helped me keep going, if I stayed at home I don’t think I’d still be here. I enjoy going to bowls and the pub, having friends coming over, or just even going for a drive – it’s always good to go out.”
“I always find myself having a laugh, I just find something to laugh at, even if it’s myself. I find myself in all sorts of situations thanks to my MND symptoms – but you always work out a way to get around it.”
Currently Troy spends each morning and afternoon as a support officer assisting children to get to and from school, and in his free time you’ll find him on the bowling green.
“My MND hasn’t affected my brain, just my ability to move. I’ve been a support officer for the past 13 years and it’s been a pretty good job and quite enjoyable. I talk with the kids and help them by, to make sure they’re ok getting to and from school, assisting mainly primary-aged kids” he said.
“I try to make sure I get out and about as much as I can, and hang out with friends. I’m a regular lawn bowler, so when I’m not at work I’m lawn bowling or socialising, after work go out and try to keep as active as possible.”
Lawn bowls has seen Troy travel around attending competitions, but there’s little time for sightseeing when he and the rest of the team are serious sportsmen.
“I’ve done a few comps in places like Foster, and Murundi. I’ve been playing for the last 16 years, and we’ve also done the Central Coast Pennant, and have made it to Cabramatta for the State Finals. Bowls has also taken us to Kiama – we got to go and see the blowhole,” Troy said.
“I get to do a bit of travelling around with bowls, I do a few tournaments with the boys - there’s usually money involved, and while we haven’t won any of these tournaments we’re very serious about it, there’s not much time for looking around sightseeing,” he laughed.
Troy has also been fortunate enough to do a bit of travelling, heading to Queensland to see family and overseas.
“I’ve visited Bali for the last four years, and just got back from a trip there at the end of 2025. I’ve also been able to visit friends and family – I’ve been to Russell Island where my niece has a place, saw my brother up on the Sunshine Coast, and my best friend lives in Brisbane. I like travelling to warmer places,” Troy said.
Heading to warmer places is about more than a penchant for more tropical locales. Troy explained that having MND means he needs to be more cautious about the temperature of his surroundings as his body is less able to cope with things like cooler temperatures now, due to the progression of the disease.
“Cold weather is annoying for most people, but when you have MND and it gets cold, it’s much harder to use your muscles and joints – for example I need to carry pliers to do up any zips, and I always need handwarmers to get my circulation going. It’s just a matter of making the struggle a bit easier. Unfortunately, there are a lot of things you can’t do in the winter,” he said.
“My body is a lot freer in the summer, though now my hips have been playing up pretty bad and I’m in a lot of pain, so my physio has got me doing a lot of exercises.”
His changing body has brought many challenges, from getting a comfortable nights’ sleep or doing tasks around the house, to planning activities with family and friends.
“My only goal now is to wake up every morning,” Troy said.
“My diaphragm doesn’t work properly any more – when I’m lying down, gravity forces against it – so I have a BiPAP machine. It’s at a higher pressure so wearing it makes me feel like Darth Vader every night. You get used to it, but I reckon I should paint it black,” he laughed.
“You only have one break in the seal and then air shoots up in your eye, if you roll over the mask shoots off, it’s another one of those things you just have to deal with. I got the best mask I can get, but it still wakes me up at night because anytime I’m not getting air in my lungs the machine is going. I get up at 5:30am for work, so I make sure I get to bed with enough time to sleep.”
Having a longer form of MND has meant the changes he’s experienced in his body and physical abilities have been ‘hard to judge - because it goes so slowly, you go to do something then suddenly realise you can’t anymore’.
“MND symptoms did go pretty fast through my right arm, but I can still use my left arm,” he said.
“So there’s a few little tricks I’ve developed over the last 28 years, little adaptions I’ve had to make. I’ve really had to MacGyver things up, working things out as I go,” he laughed.
While he stays as independent as he can, he’s grateful to have a good support network to be there for him.
“I’ve trained my family and friends well, they know if I need help I’ll ask. They’re good with that, and when I do need help, they’ll come over – for example if I need a hand putting a picture up on the wall,” he said.
“A lot of the stuff I can do by myself - you don’t want to rely on people all the time, plus I’ve got to use my muscles as much as I can.”
“John Hunter Hospital fitted me for a leg brace for the foot drop I had, which will help with the muscular dystrophy and atrophy. I just have to put up with it – it’ll end up happening eventually anyway, but I still try and keep myself as fit as I can. I have to use a bowling arm now for my lawn bowls, it’s designed to help with grip – where there’s a will there’s a way, you just have to find the way!”
Troy has been able to get assistance through the NDIS for tackling some of the challenges MND brings, and is thankful for the support MND NSW has provided to him.
“Marnie is my MND Coordinator of Support, she’s been absolutely fantastic,” Troy said.
“If you’re going through MND, you’ve got enough to deal with. So it’s a massive relief to have this assistance from MND NSW for navigating the NDIS - I don’t know what half the paperwork is, Marnie takes care of everything and has been an absolute godsend.”
“I tried doing NDIS by myself when it first came out, but I couldn’t work it out and it was hard to deal with. Anytime I’ve got an issue I just ring Marnie and she does it all for me.”
Aside from the physical effects of MND, the disease can easily have a significant mental impact on those diagnosed. Troy has maintained a positive outlook on life even with the immense changes in life plans and ongoing challenges MND has thrown at him.
“I don’t really plan for the future, my only advice is just don’t give up,” Troy said.
“There’s always the hope that there’s a cure around the corner. One day it will pay off hopefully, don’t just throw the towel in, hang in there as long as you can,” he said.
“It’s hard dealing with MND, you really lose your dignity. I had to grieve the old Troy Berry, and accept the new one.”
“When I was diagnosed with MND, I was in the prime of my life – I ran my own martial arts studio and I was a bouncer until I got sick. But you’ve just got to learn to find different things to enjoy – find even just one thing that makes you happy and keep doing it.”
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