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.
The story of Joanna and her husband
“He initially thought he had a prostate and urgency problem. He also had an undiagnosed sleep apnoea issue which caused breathing issues at night. After encouraging him to see a respiratory doctor he was given CPAP machine which strangely seemed to fix his night time urinary incontinence problems. This delighted my husband because he thought he was getting better. Things improved a bit but he still had problems with bladder control during the day and he began having issues with his bowels. In the meantime, he decided he wanted to help himself, and started a get fit plan. Unfortunately he could only walk for a few hundred metres before he felt terribly out of breath and experienced pain and stiffness in his shoulders and legs. His Dr thought maybe he had a heart problem so he was referred to see a cardiologist. After having a coronary angiogram he was given the all clear. At this time, he had also started to shuffle a bit and his speech had started to become soft. He was having physio to try to help his incontinence and he was also referred to an Endocrinologists for hormone tests. He was aware of his physical changes and started to research what he thought might be causing his symptoms. He shared his concerns about maybe having Parkinson’s with his doctor so he was referred to see a neurologist. The neurologist mentioned a few neurological disorders, including MSA, but assured him he didn’t think my husband had that. He was eventually diagnosed with “Parkinsonism”. Two months later my husband was admitted to hospital for a dopamine challenge. He was not responsive to the dopamine and was diagnosed with MSA.
My husband was 62 at the time of his MSA diagnosis. He was a Logistics Consultant. His symptoms made it difficult for him to work. He never complained about it. My husband was a very proud man.
It was difficult to find any information about MSA when my husband was diagnosed. The neurologist said that there was not much we could do as there was no treatment. He basically just said it was a progressive disease and that in about 6-7 years he would link him up with a palliative care team.
My husband deteriorated quite quickly. He didn’t lose his speech completely but he did find it very difficult to talk. He also had terrible trouble with his blood pressure. A couple of times his friends had taken him out and he had a, what he would call a “plunge” and he would collapse.
He would be taken to emergency by ambulance but nobody there knew what MSA was. He wouldn’t be allowed to go home because his blood pressure was too low. He found that really frustrating.
My husband passed away 18 months after being diagnosed with MSA.
As a carer, If you can find out what services are out there it will really help. We did eventually find a great team who supported both my husband and myself. Try not to be frightened of what might happen. Just enjoy every day because you don’t really know what’s coming. And most importantly as a carer, you need to look after yourself too”
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