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.
What were the things you first noticed which made you realise something wasn’t quite right?
“My husband and I had a small farm [that] we built from scratch. We were always fencing and as it was mostly rocky ground, it was challenging enough without losing one’s footing and landing bottom first frequently. I blamed my boots, purchased new ones only to get the same result. My dogs were often seen fleeing my side because they were scared I would fall on them. In my vegetable garden I was down more than I was up. I also noticed my feet were giving me trouble, they swelled during the day and cramped during the night and early morning.
My first reason to seek medical advice was for my blood pressure which I discovered was extremely high while playing doctor with my granddaughter with a proper blood pressure machine. This was the start of many expensive tests. I developed a slight tremor which was very occasional and later a slight leg drag. My skin was dry, my feet cracked and my mouth felt like I swallowed a blanket. My need to urinate was frequent. I developed constipation and finally I had a major breathing incident with breathlessness leading to an asthma attack like event. At this point I knew I had a problem.”
What was your journey to receiving your final diagnosis of MSA? Could you comment on how this process impacted you?
“There’s lots of ruling out in this process to find the CORRECT ANSWER … you eventually chill on this topic or you would go mad! I was part of a study group and so I had different neurologists examine me. In real terms there is no test that says you have MSA. … I went from Parkinson’s to Parkinson’s Plus to possible Cortical Basal Degeneration to MSA. The process is draining…you don’t feel you can fight when you don’t know the enemy that lurks in your head.”
How would you describe the level of awareness of MSA within the medical community and the public?
“I found that other than Neurologists nobody had heard of MSA. Worse, nobody wanted to know. Others wanted to just simplify it to Parkinson’s. My GP on reading my diagnoses said “How am I supposed to treat something I have never heard of?” I had attended his practice for seven years and then he had consecutive heart attacks. When I booked an appointment with the head partner he informed me he would update my scripts and that I needed to go to Emergency there after because none of the seven doctors wanted to see me. My doctor’s locum took eight weeks to arrive.”
What are the most difficult limitations and challenges you face?
“Well every loss is felt no matter how trivial. The loss’s that stand out for me are:
Losing my license
Losing my job
Accepting and losing my ability to walk
Giving up our farm and the dreams we had!
I used to dream I was running around the farm every night and wake up to the reality every day!”
What sort of support systems do you think you need that is currently lacking?
“My husband has been caring for me for nine years and he has had one day of respite where he drove over night to maintain his one-man business. When my health was such that I could have been cared for easily, nobody offered to relieve my husband. Now I’m deemed high care and not even the respite facilities want to care for me.
I believe that a couple of high care respite facilities in each state should be available to offer professional care.
I think that there should be assistance to get to medical appointments with a support person supplied for those who have no support
I think it should be possible for a group like Lifeline or similar to be responsible to collect medical equipment and re-house it at affordable rates to people with neurological disease.
I think Centrelink need to revise their medical information to include MSA as a disability
The NDIS needs to be made easier for neurological diseases to cope with…our brains are failing and our carers are stressed out.
Education, Education, Education of those working in the medical field”
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