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Living with MSA: Deb

Updated: Jul 30, 2021

Youth Neuro Australia has conducted a series of interviews with patients and carers afflicted by Multiple System Atrophy (MSA) - neurodegenerative disease that has impacted thousands in Australia. Despite this, there is a lack of awareness both within the public and the medical community. Currently, there is no charity established to support these individuals, and minimal research being conducted due to the limited funding. Through our interview series, we hope to raise awareness to help improve the life of patients and carers suffering from this brutal condition.

Deb's MSA Story:

"I’m 44 years old and was diagnosed with Parkinson’s about 5 years ago. Two years into that I was hospitalised for a week and that’s when the MSA was diagnosed. I noticed my leg was sort of dragging a bit, I had a tremor in my thumb, dyskinesia, the rigidity. I did already have swallowing issues and some urinary and bowel issues. I also got chest pain with it which mimicked a heart attack, and when you get into the ambulance, they haven’t heard of MSA. Then when I do get to the hospital, I’ve had treatment delayed for over an hour before because they’re trying to figure out what I’ve got. And it’s really awkward.

The rareness of it makes it difficult to get help, because no one knows what to do. Sometimes the neurologist would be away, and unless you need to be hospitalised you can’t just go to any GP because they don’t even have a basic understanding of MSA. Today I was talking to the NDIS (National Disability Insurance Scheme) trying to register for it. I told them I had multiple system atrophy and he said, “Oh so you have MS?”. I had to tell him about four times that it’s nothing to do with MS. I’ve learnt don’t ever just say MSA but to say the name in full, otherwise they might think you’re talking about Meat Standards Australia!

The depression is severe quite universally, mostly because it’s so unknown and so hard to get information. It feels like no one cares. I’ve had moments when I haven’t been coping – I’ve rung Lifeline one time and I am on antidepressants, obviously.

Awareness would be huge because that’s half the battle. It still baffles me the complete unawareness of this disease, it’s scary. There’s more people with MSA as far as I know than people with motor neurone disease (ALS)!"

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