‘She’ll lose control of all her muscles’: The family of Patricia Mills share their heartbreak over rare terminal diagnosis

When Patricia Mills started falling over at work, she went into early retirement – but the devastating true cause will cost her life.

Kindergarten teacher Patricia Mills realised something may not be right when she began falling over children at work.

Worried for the children’s safety, the 60-year-old went into an early retirement after 34 years as an educator.

She, along with her husband of 38 years Steven Mills, then began what would be a year long journey to discover what was wrong.

“We were visiting doctors two to three times a week,” Mr Mills said.

After a year of appointments, in May this year Ms Mills was finally diagnosed with a neurodegenerative disorder called cerebellar type multiple system atrophy – known as MSA-C – a rare terminal illness.

“She will lose control of all her muscles – that is what will cause her to pass away,” Mr Mills said on behalf of his wife, who has little ability to speak anymore.

“A muscle that does something important just won’t do it and she’ll end up passing away.

“Doctors say most people have between six to eight years.”

In the few months since her diagnosis, Ms Mills has lost her ability to write, talk and walk properly.

She will continue to lose function of her muscles until she becomes wheelchair bound, unable to function on her own at all.

Patricia Mills who has been diagnosed with a rare terminal illness called MSA-C at home in Gulfview Heights, SA, Picture: Emma Brasier

“She used to be able to shower on her own once a day, but now it’s every few days,” Mr Mills, who quit his job as a systems administrator to become his wife’s full-time carer, said.

Ms Mills is aware of what is happening to her. She is able to recall the moments she lost the ability to do particular tasks. But thinking about what her future may look like is unbearable.

“I can’t think about it,” she managed to say.

Mr Mills said it is too painful to imagine his wife’s future.

“She’ll be dragged out of bed in the morning, showered by the carers, put in a chair to watch TV all day and do it again,” he said.

The couple say MSA-C is not a well known disorder and have decided to dedicate as much time as possible to raise awareness for the incurable condition.

“The only thing we can treat is the symptoms,” Mr Mills said.

A fundraising walk will be held for Ms Mills on October 28 at Mawson Lakes to raise awareness for MSA-C.

For more information about the walk or to support Ms Mills you can click here.