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'Like I'd been ripped off': Life after a Parkinson's diagnosis at 41

From ABC Australia · () English

Summarized and contextualized by DistantNews.

At a glance

In-depth Named sources Context piece
  • Hayley Milne was diagnosed with early-onset Parkinson's disease at age 41, a condition typically affecting older individuals.
  • The diagnosis significantly impacted her life, forcing her to stop working and affecting her memory, balance, and ability to perform daily tasks.
  • Parkinson's disease is the fastest-growing neurological condition globally, with Tasmania experiencing high rates.

Hayley Milne was diagnosed with early-onset Parkinson's disease a decade ago, at just 41 years old, challenging the common perception of Parkinson's as an "old man's disease." The diagnosis came during what she describes as the busiest time of her life, raising three young children while working.

It was like it'd been ripped off, most people get it in their 60s, 70s, 80s and then I get it in my 40s, where you're still having to do everything, it's the busiest time of your life.

— Hayley MilneDescribing her reaction to being diagnosed with early-onset Parkinson's disease.

"It was like it'd been ripped off, most people get it in their 60s, 70s, 80s and then I get it in my 40s, where you're still having to do everything, it's the busiest time of your life," Milne said. The neurological condition's symptoms, which began in her mid-30s, have progressively worsened, affecting her tremors, balance, memory, and leading to significant anxiety and depression.

I have tremors in my head and my hands, my legs freeze, my balance is terrible, I don't have much of a memory.

— Hayley MilneDetailing the physical symptoms of her Parkinson's disease.

Parkinson's disease has reshaped Milne's future, forcing her to stop working and impacting her ability to perform simple tasks like driving or writing. She described a period of intense isolation due to the emotional toll of the disease, eventually finding a way to cope by accepting the changes and moving forward.

For quite a few years I was very isolated at home because the anxiety and depression was horrific that I didn't like leaving my safe place.

— Hayley MilneExplaining the emotional impact of her diagnosis.

Tasmania, Australia, is experiencing some of the highest rates of Parkinson's disease in the country, which is also the fastest-growing neurological condition worldwide. Local resident Peter Longman also shared his experience, detailing how the disease has turned his once active life "completely upside down," making even simple actions like getting out of a chair difficult. His wife, Daphne, described the pain of watching the disease "steal" the active man he once was.

It's turned it [my life] completely upside down from the simplest thing that I used to do.

— Peter LongmanDescribing how Parkinson's disease has affected his daily life.
DistantNews Editorial

Originally published by ABC Australia. Summarized and contextualized by our editorial team with added local perspective. Read our editorial standards.

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