LIVING WITH MND - RON'S STORY

Ron, 79, lives in Buderim with his husband Narin. On the 4th of February this year, Ron was given the news that nobody wants to hear, that he has Motor Neurone Disease.

Born in 1946 and adopted at an early age, Ron says he had “the best adoptive parents that you could hope for,” though they were “a bit conservative, as most people were back in 1946.” His childhood was spent between Rockhampton and Townsville, following his father’s insurance career.

Over the years, Ron has worked in “a multitude of jobs, mostly people… people sort of jobs,” from retail and sales to hospitality, where he spent the final 20 years of his work life in Brisbane. He also hosted international students through home stay programs. After high school, Ron joined the old CMF — the Citizens Military Force (Army Reserve) — serving in the service corps, “which involved driving trucks. I love driving… I was in the service core… supporting the troops and the frontline with food and whatever else they need.”

A self-described car lover, Ron says losing the ability to drive has been one of the toughest changes about living with MND. “It’s one of my best joys taken away or two, two of them right, which is a bit sad.” Walking on the beach was another joy — something else he misses. “I used to love walking on the beach and even around the village here. It’s about a kilometre around the circuit of the village.”

Ron first met Narin in Chiang Mai, Thailand, in 2013. They’ve been together 11 years and married for five. Ron speaks “a tiny bit of Thai” while Narin’s family speaks no English, but they get along famously. “There’s a lot of smiling and laughing, but not much conversation. But they’re lovely, lovely people… humble, self-sufficient farming people.”

Ron first noticed something was wrong while walking on the beach at Warana. “The right toe kept digging into the sand and I thought ‘this is annoying.’” His GP suspected drop foot and sent him for scans. At the time, Ron was about to travel to Thailand. “I didn’t hear anything

from her and I thought, ‘oh, that’s good.’” Months later, he began losing grip in his left thumb. By November 2024, after returning from Thailand, his GP referred him to a neurosurgeon. Instead, he was redirected to the neurology team at Sunshine Coast University Hospital. During his appointment, Ron was wearing shorts and the neurologist, (Dr Antony Winkel our new Management Committee member you would have read about earlier in this edition) noticed involuntary, visible twitches in Ron’s leg “He said, ‘I’m sorry to tell you Ron, but I think I’ve just diagnosed you with MND.’ “I sort of broke down.” Ron said of his reaction to hearing the news.

Before his diagnosis, Ron’s only awareness of MND was from a news story about Neale Daniher. “I thought, ‘oh, that’s horrible.’ And that was the first I heard of it.”

Ron’s MND symptoms are progressing, he told us “The main thing that’s happening with me is loss of power in my right foot and right knee. And my left hand is clawing. So walking is very restricted. I use a walker even in the house.”

In his village, Ron says the community has been “very helpful and supportive. It’s probably made people even closer.” Still, falls are a challenge. “Twice in the last two months we’ve had the ambulance come to get me up… So now I’ve just said ‘look just call the Ambos.’”

Ron connected with MND Queensland very early on in his MND journey. “The neurologists suggested I get in touch with MND Queensland. I got in touch and Shelley came out and we had a meeting which was great… She said, ‘We’re with you every step of the way. If you need us.’ So I valued her input.” MND Queensland has provided equipment including “the toilet raising thingy and safety bars and a wheelchair.” Ron says, “They’re very quick, very quick and supportive.” He also enjoyed sessions with physiotherapist Dan. Ron has also completed voice banking with Helen so that he can rest assured that if he loses the ability to speak he can continue to communicate with the use of technology and still sound like himself.

Pictured: Ron and his husband, Narin on a visit back to Thailand.

Ron has volunteered for clinical trials. “I’ve heard nothing back yet.” When asked what else he’d like to see change about the MND landscape Ron said “I think the government should be putting more money into it as well. It seems to be on the increase.”

Well aware that MND Queensland receives no government funding and is a charity, we asked Ron what he’d say to our supporters. “Well, I think if anybody can support them, financially, it’ll be a great boon for the service. I suppose every little bit helps, doesn’t it?” he replied.

When asked what advice he’d give to someone newly diagnosed with MND, Ron responded “Just seek support from MND Queensland. They’re good guys. And don’t hesitate to do what you enjoy doing now… because time is of the essence.”