Updated: Mar 14, 2020
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.
“In 2014, I fell as I turned while dusting in my daughter’s room after a few months of
laughing about being increasingly clumsy and able to trip on a piece of paper. I ended
up with a nasty bruise from my hip to my knee. I’m a Pharmacist, so knew enough to
know this wasn’t normal, so I saw my GP.
When all my tests came back normal I was referred to a neurologist who speculated it might be anxiety, which I knew it wasn’t. By 2016 I was getting occasional urinary incontinence, my voice was getting slurry, and the balance issues were increasing and I could no longer paddle board which I’d been doing at least weekly the previous year. By then, my husband and I were fairly convinced I had MSA because of the symptoms. However, it wasn’t until 2017 when my most recent MRI was compared to my original one to a panel of neurologists that my diagnosis of MSA was confirmed. Apparently, hot cross bun signs could now be detected on the pons as an indication for MSA!
It was almost a relief when the diagnosis was confirmed. We’ve since found out more about MSA but when we first read about it in 2014, despite both working in healthcare, neither my husband or myself had ever heard of it.
I stopped working two and a half years ago. My job involved lots of talking, walking and turning which was getting harder, and I didn’t want to appear “drunk” to those who didn’t know my condition. I stopped driving shortly after that and stopped cooking last year. Now, I’m in a wheelchair full time, and have been since mid 2018. I also miss chatting with friends over a meal. Even as a I look at future communication devices with my speech therapist, I realise they’re great for short sentences, but it is sad to have lost the opportunity of more conversation. Just about everything in my life has been impacted.
So far, I’ve had an attitude of I can’t change anything so I should try and make the most of my time. My husband is now my full-time carer and I have a great support network through him and my friends and church. I have all that I need at the moment.”
Find out more about YNA and MSA at our Facebook page: https://www.facebook.com/youthneuroAU/