21 Jun Mick Hunt reflects on his brother John’s MND diagnosis and passing
Motor Neurone Disease (MND) is an uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.
There’s no cure for MND, but there are treatments to help reduce the impact it has on a person’s daily life. Some people live with the condition for many years. MND can significantly shorten life expectancy and unfortunately, eventually leads to death.
MND Awareness Week is from Sunday 19th June to Saturday 25th June 2022.
Most of us know a lot more about MND than we did a few years ago thanks to Neale Daniher’s very public battle, but Mick Hunt unfortunately knows just how brutal the disease is after his brother John lost his life in just 18 short months. We spoke with Mick recently about John’s battle with MND which he refers to as ‘the beast.’
John Hunt had grown up locally and later moved away to Geelong, but still caught up regularly with family including brother Mick. It was in August 2015 at a family gathering where Mick noticed something different about John. “John was always a big bloke, bigger than me, but it was almost like his clothes were a little bit big for him and his legs were slightly bowed,” he said.
In fact, one of John’s sons Bart also commented saying “Dad, you told me you were a lot bigger than Mick; you don’t look bigger than Mick tonight, he’s got you covered.”
Later that evening Mick did ask John how he’d been, and he replied he was good, still swimming 500m a day and running his business, Kanga Jack Transport. John was also involved with the Brisbane Lions, particularly involved in their Victorian-based matches. Mick kept checking in, a week later John had a crook shoulder and couldn’t swim. Mick kept at him, checking in.
In November, John rang saying “A bloke with a bow tie and yellow socks has told me I am the one person in the MCG on Grand Final Day,” meaning the 1 person in 100,000 living with MND.
That man was Dr Paul Talman, a specialist neurologist who has diagnosed over hundreds of people with MND. In fact, when John questioned the diagnosis Dr Talman said “I’ve diagnosed 600 people, I have been right 598 times.”
Initially John didn’t share the information widely, Mick was sworn to secrecy. John needed a bit of time to get things in order including selling his business.
During this time John started noticing little things like losing strength in his arms. John’s disease included flail arm syndrome resulting in John being unable to move his arms, yet he could still walk. A PEG feeding tube was inserted to maintain nutrition when eating and swallowing became too difficult for John due to loss of throat muscle strength.
More of John’s family were looped in about his diagnosis around Easter the following year. Members of the family including John and Mick participated in the MND Walk to the ‘G in June.
It was important for John to maintain independence. He kept driving until about 7-8 months before he died.
John started to lose muscle definition on his neck and shoulders. “Every time I saw him, I saw him in a different state, I saw him getting leaner, narrower, and his mind still worked perfectly,” Mick said.
“To be able to talk to him at the end was a good thing. We could have a phone call, have a conversation, so you look at those things and you think there’s a lot of positivity that goes with it.”
John passed away on 26 April 2016, aged 63.
Mick highlighted the need for adequate support for people living with MND. Often complications can arise particularly from trips and falls, but also because of the loss of strength can include difficulty with swallowing.
“Gail, his wife, and their son Bart were just unbelievable. All the way through it,” Mick said.
Keeping busy was one of Mick’s coping strategies following John’s passing. At the time he was coaching the Timboon Demons and that was a welcome diversion.
Mick has been involved in MND fundraising efforts, including raising over $3000 at his business 12 Rocks in Port Campbell.
Mick commends Neale Daniher’s efforts in raising the awareness about MND and the fundraising which directs funding into research about the disease. Former Essendon footballer Neale Daniher was diagnosed with MND in 2013 and co-founded FightMND the following year.
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