Updated: Apr 16
Youth Neuro Australia has conducted a series of interviews with patients and carers afflicted by Multiple System Atrophy (MSA) - a 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 inadequate support for these individuals, and minimal research being conducted due to 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.
“My reaction was to Google it when i left his office and was shocked to read that there is
no cure or treatment for it and I am going to die from it.”
In the winter of 2016, Phil was having trouble with his left hand - numbness and restricted movement. He went to the GP and was told it was Raynaud’s Syndrome but after 2 weeks it was no better. Phil saw another GP who suspected a minor stroke, and had some CAT scans and a MRI. A neurologist said the scans were clear, and diagnosed Parkinson’s Disease instead.
“Symptoms didn’t really progress until July 2018.”
After collapsing multiple times over several months in late 2018, he visited his neurologist again who said there was nothing else Phil could do or take. He sought out Professor David Williams, and after a couple of checks, Phil was diagnosed with MSA in December 2018.
“At the time I had never heard of it and everybody I have told is the same. … I don’t think there is a lot of awareness of the disease.”
Phil attends a Parkinson’s support group in Victoria, and they have given him an information pack about MSA which he has found informative. He is currently starting physiotherapy for strength building exercises. Phil finds that his medications assist him with his comorbidities, as well as maintaining his functions which have been impaired by MSA.
“I don’t think it has really sunk in yet because I can still do everything for myself but I have had a few good crys.”
Find out more about YNA and MSA at our Facebook page: https://www.facebook.com/youthneuroAU/