LOS ANGELES: For Sue Rogers, denial wasn’t a weakness, it was a way to keep living without the weight of what the future had in store.

After years of running small properties in Pittsworth and Millmerran, Mrs Rogers and her husband Noel were getting ready to semi-retire in Toowoomba in 2023, when she started noticing she was struggling to walk.

About nine months later Mrs Rogers was diagnosed with amyotrophic lateral sclerosis in February 2024.

ALS is a type of motor neurone disease which often starts with muscle twitching and weakness in an arm or leg, trouble swallowing, or slurred speech.

It causes nerve cells in the brain and spinal cord to die, affecting muscle movement and eventually affects chewing, swallowing, speaking, and breathing.

Mrs Rogers said she was devastated by her diagnosis.

“The whole world as I knew it just came tumbling down,” she said.

“I knew my whole life from that point on was going to be different.”

Mrs Rogers has been a fashion stylist at Australian company Postie Fashions for more than 30 years, where she would travel to regional areas to sell clothes and host styling sessions, until she started struggling to carry the clothes.

“It wasn’t the clothes that were getting heavier, I was getting weaker and I didn’t realise why I was feeling weaker,” she said.

“I don’t do style sessions anymore because I can’t physically do it.”

She said her work in fashion was such a big part of her life so she continues to help her customers over the phone, even though she’s unable to keep hosting her events.

She said her mobility deteriorated quickly.

“It just happens,” she said.

“All of a sudden you might wake up one day and you can’t straighten your fingers out anymore.

“It started with my left foot and it progressed up to my knee.

“But my doctor said stay active and live your life, so I’ve always tried to live by those words.”

So Mrs Rogers continues to go to exercise physiology twice a week to stay active.

“If you don’t use it, you lose it,” she said.

The average life expectancy for ALS is three to five years from diagnosis and Mrs Rogers said the more she read about her condition the scarier it got.

“Sometimes knowledge is power but sometimes denial works for me,” she said.

“The less you know the better because you’re not worrying about what’s going to happen.

“I’m just not going to live my life thinking about what’s going to happen to me.”

She said it was almost impossible to ignore all the things she used to be capable of but couldn’t do anymore.

“Just basic things of just getting up and going to the toilet or going to do the washing and hanging the washing out, or making a cup of tea, or peeling potatoes,” she said.

“I can’t do any of that.”

Mrs Rogers said the hardest part was not being able to lead a normal life anymore.

“I look at people now and I think how lucky they are and how they can plan things, and go on trips,” she said.

“You take it for granted how you can just do things and now I can’t.

“So that’s the hardest thing, to accept not being able to live my life.”

Mrs Rogers and her husband left their property in Pittsworth to semi-retire in Toowoomba only a short-time before she was diagnosed with ALS and now he is her full-time carer.

“Our nice retirement in Toowoomba didn’t last very long,” she said.

Mrs Rogers said they had plans to travel after retiring and she had always wanted to travel to England but never got there in time.

“It’s one of my biggest regrets that I never went to London,” she said.

Mrs Rogers said she was shocked to find out she had narrowly missed being eligible for NDIS coverage, but because she was diagnosed at 66 she ended up on a My Aged Care plan instead, which cut her funding by $200,000 a year.

“That’s something you don’t know until you’re actually in the system,” she said.

“It’s the same disease, but just happens to be diagnosed at a different age.”

People are only eligible for NDIS support below the age of 65.

Mrs Rogers regularly attends support group meetings hosted by MND Queensland support co-ordinator Kirsty Harris in Toowoomba.

Mrs Harris said she supported people with MND from diagnosis through to end of life and travels to Ipswich, Lockyer Valley, Miles, Warwick, Goondiwindi, and anywhere in between to visit clients.

She said it was a cruel and complex disease.

“It strips away mobility, speech, and eventually the ability to breathe. Yet it leaves the mind sharp, fully aware,” she said.

“This is the part of MND that makes it so devastating that I wish people knew about more, the real and harsh reality of this disease.”

Mrs Harris said through her work she had seen the challenges people with MND face.

“I’ve also witnessed remarkable strength, deep love, and a community that never stops fighting,” she said.

“The hardest part is walking alongside people as they face progressive loss of independence, while knowing how much they want to hold onto the life they know.”

She said many of the people she supported were over 65 and not eligible for NDIS funding.

“Motor Neurone Disease is terminal. There is no cure. Time is short,” she said.

“With the right care and support, people living with MND can maintain dignity, connection and independence.”

The Toowoomba support group is held on the first Wednesday of every month at Picnic Point Cafe.