Making the best of it: Greg’s story

At first, Greg thought it was a heart attack or a stroke. In 2019, he was lying underneath a train performing maintenance, as he had done every day across his long career as a fitter machinist when he experienced what felt like an electric shock down his neck and one side of his body.

“My left arm went really numb and sort of half-dead, and I thought ‘I’m having a heart attack or a stroke.’ It dissipated very quickly and I felt alright,” he recalls.

“I went to the change room and it hit me again, twice as badly. I jumped on my scooter and rode home – in hindsight I probably should have called an ambulance, but I thought I’d go to the doctor the next day.”

Within 24 hours he was in hospital for a series of tests, after which he was misdiagnosed with transverse myelitis. 

“Two years later I still had two very numb hands, terrible back pain and two very numb feet. At one point I could hardly walk, and I knew something was seriously wrong. I went to another neurologist and he said, ‘you’ve got primary progressive MS, you’ve got to get to hospital right away.’

“He emailed the woman who is now my professor, I had a two-hour interview with her and she got me onto medication right away. I get infusions monthly and I’m doing quite well.

“They said if I’d worked a desk job, I could have ended up a quadriplegic. But because I worked such a physical job, it presented itself early before it did a lot of damage.”

Greg was referred to MS Plus, where he engaged with a peer support group for people aged 55 and over living with MS. The group meets regularly at the MS Plus Lidcombe Wellbeing Centre.

“It was really good because I’m interested in hearing other people’s cases and telling my own story. It’s a fascinating and different journey for everyone,” he says.

Greg was also shown the Lidcombe Wellbeing Centre and was impressed by the facilities available to people living with MS and other neurological conditions.

Adjusting to life with MS has been something Greg says he is fortunate to navigate alongside his wife, children and grandchildren.

“I have a work schedule at home where I’ll clean the pool, or fix the leaking tap, or tend to my veggie garden and they’ll be my jobs for the day. I can do 20 or 30 minutes before the pain grows to the point where I need to lay down for an hour, and then I go again.

“At first, I had the mindset ‘why me?’ I was working towards a really good retirement, we spent all our time at home with our kids, family and friends. My wife had to give up her job to look after me and her support has been amazing.

“But now, I think it’s the cards I’ve been dealt. Life changes, we’ve adapted to it and we make the best of it we can. I always say that I’m blessed to have a very good life.

“You really learn about life and people when you get very sick, and I have met a lot of beautiful people on my MS journey that have true empathy and care.”

Connect with people who understand

Living with MS can feel isolating, but you don't have to navigate it alone. MS Plus Peer Support groups connect you with others who share similar experiences, offering understanding, encouragement and practical insights. Find a group that's right for you: https://www.msplus.org.au/support-services/connecting-with-your-community/peer-support