Against all odds – Simon Challies

Amongst the names of those recognised in the King’s Birthday and Coronation Honours List of 2023 was local businessman and entrepreneur Simon Challies. Metropol writer Céline Gibson explains why.

Simon Challies says it felt extraordinary and meaningful to receive the New Zealand Order of Merit (for services to people with neurological conditions) because it is such a traditional honour.

“The Honours List isn’t a modern thing, and I didn’t appreciate how much work is involved behind the scenes to be nominated until I received the award,” says the 53-year-old director of BrainTree.

It was in 2006 that life for Simon, as he knew it, was to take a major turn. Always a physically active person, Simon began noticing that around 20 minutes into his usual run, his body would seize up.

“My right side went dead. I would have to stop for a few minutes then start up again.”

Finally, after five years of seeing doctors and specialists, Simon was referred by a physiotherapist to a neurologist. His symptoms had become more apparent, post-earthquake, and six months later Simon received his diagnosis – Parkinson’s disease.

As managing director of Ryman Healthcare at the time, Simon wondered how he could continue in that role.

“I rationalised that I could be run over by a bus tomorrow, and that the diagnosis wasn’t a death sentence. I had to lead the team, so I told them I would continue in the job while I was able to, and the directors were all good about that.”

If being given a Parkinsons diagnosis was the critical moment in his life, ironically it also proved to be the defining moment of change in relation to his career path.
One year after his diagnosis, Simon went to Oregon, to consult with a specialist who was recommended throughout North America as the best person on movement disorders.

“I really wanted information on new treatments available, or what might be on the horizon, and the specialist said, ‘You do realise that the drugs haven’t really changed since the 60s and 70s? It’s still pretty much variations of Levodopa.’”

The specialist then told Simon that the people who dealt best with these conditions ate healthily, challenged themselves physically and mentally, kept up social contacts, and got good sleep.

On realising there was no cure in the immediate or foreseeable future, Simon understood he just had to take the specialist’s advice and make it work.
Once home from Oregon, Simon began thinking about how he could use his business acumen to make a difference for people living with neurological disorders.
“I had a lot of experience in Ryman by that time, but it changed my philosophy on life. In those years from 2011 onwards, I really had a major insight and understanding into the lives of the residents and caregivers. It was a turning point.”

Simon stood down from Ryman in 2017, and in that same year, The Canterbury Brain Collective – a partnership between Multiple Sclerosis and Parkinson’s Canterbury, and Dementia Canterbury – was established.

Simon says the birth of BrainTree (now also home to Stroke Foundation NZ) came from a practical place. The former premises of Multiple Sclerosis and Parkinson’s Canterbury was in a terrible state and awaiting demolition.

“I took the view they shouldn’t be in shoddy premises because people had enough barriers to approaching an organisation or attending classes. It’s the stigma attached to it. From the outset, I wanted an appealing place to come to.”

A huge component of the distinctive vibe found at BrainTree is down to the café.

“The café is the drawcard. The whole principle of this centre is to encourage mental activity, stimulation and social contact, which is why the café is so important.”
The social contact factor isn’t just about the clients, it is also about their partners.

“While clients attend their classes, their spouses/partners can catch up in the café, and they feel connected and have a support network. Living with someone who has a neurological disorder can be challenging. It changes your relationship and it changes your outlook on life, because you don’t know what’s ahead.”

Simon and his wife, Tracey, are parents to 23-year-old Sam, and Simon feels his disability has made Sam more protective of him.

“Sam’s good about it, but I think he probably feels obliged to stay close to us. We don’t want him to feel restricted like that, but I think it’s something that’s almost unstoppable.”

On a personal level, while BrainTree keeps Simon mentally stimulated, he equally values his social life, such as the walking group he joined six years ago.

“Every Sunday we walk Mount Vernon, and every Wednesday we walk Sugar Loaf – top to bottom, rain or shine.”

Simon adds another golden rule for a contented life: “Wine at five is also important!”