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.
1. What were the things you first noticed which made you realize something wasn’t quite right?
My husband, George, was first diagnosed with essential tremor in 2006 after a urologist operating on his prostate issues found he had a full body tremor and advised him to have it investigated. In 2008, this diagnosis evolved to Parkinson’s Disease and in 2016, Multiple System Atrophy (MSA).
2. How did these symptoms progress? What were his main symptoms?
My husband has since passed away but the following were his main symptoms: blood pressure being either very high or very low, bowel and bladder issues, movement difficulty, trouble swallowing, leading to aspiration pneumonia, speech difficulties, seizures and frequent Urinary Tract Infections, leading to sepsis.
3. What was your husband’s journey to receiving his final diagnosis of MSA? If there were any previous diagnoses he was treated for, how were these eventually ruled out? Could you comment on how this process impacted you?
In 2006 aged 56, he was diagnosed with Essential Brain Tremor. In 2008 aged 58, he was diagnosed with Parkinson’s disease. In April 2016, MSA was finally diagnosed and in September 2018, he passed away due to aspiration pneumonia and sepsis.
4. What was your reaction to receiving a diagnosis of MSA? How has this changed since?
We were initially shocked, but it did make sense as the disease was progressing quite rapidly.
5. At the time of your diagnosis, what was your understanding of MSA?
None at all. I asked lots of questions and Google was my friend.
6. How would you describe the level of awareness of MSA within the medical community and the public? How did this impact you? What sources of information were available for you to further your understanding of this disease?
The awareness of MSA within the medical community and public was very poor. Within the public, when we said MSA, they thought he had MS. Even our GP had to ask me what MSA stands for.
We were at the Kingston Movements Disorder Centre/Hospital. Each time George was admitted to hospital, I had to go through what was best for him with the staff. The main problem I had was when the nurses and doctors wanted to treat him as a normal patient and not as an MSA patient. Unfortunately, the care of an MSA patient is entirely different due to the BP issues for feeding, tablets, fluids etc and needs to be carefully monitored at these times as BP can drop rapidly and cause seizures and passing out.
7. Are you aware of anyone in your extended family who may have had a similar condition or symptoms?
8. What did George’s specialist recommend after his diagnosis? Did he undergo any treatment? Was he started on any medication?
Yes, George stayed at Kingston Hospital for four weeks introducing medication and ensuring no side effects.
9. Was there any improvement?
Yes. There was improvement to a certain degree but as the disease progressed, his BP and movements became a big issue.
10. Did you use any allied health services? E.g. physiotherapy, residential care. If yes, how would you describe your experience?
Yes, we used Physio, Speech and Massage. At first, this was done through Allied Health but when it became impossible to take him out, I arranged for them to visit him in the home. I kept him at home until he passed away in hospital.
11. How has this condition impacted you emotionally and mentally? How have you coped with this?
I would say it was very hard, especially towards the end [when] he could not be left for longer than an hour, so this made going out near impossible for either one of us. Just before he passed away, I had bought a tilt in space wheelchair [for him]. Unfortunately, he didn’t get the opportunity to really use it.
It was extremely hard emotionally, physically and mentally as you knew there was no cure or a halt to the disease and you slowly watched the person become more and more incapacitated and more reliant on assistance. I never knew when I went into his room each morning whether he would be alive or not.
12. What are the most difficult limitations and challenges you face?
I was unable to go out and leave him for any length of time. I believe without the BP issues, life would have been a lot easier for both of us but each day became more of struggle for him and [he became] more reliant on me for assistance. Each time the disease progressed, trying to work around it was a challenge i.e. timing medication as to when was the best time to eat and monitoring how much fluid he had consumed.
13. What are some of the changes George had to make in his daily life as a result of this diagnosis?
He had to make changes to everything: to the time he took his meds to the time he ate and showered. When he was originally diagnosed, I worked out what types of food were ideal, how water and medications affected his BP and put in a plan to try and keep his BP at a level where he wasn’t passing out or having seizures.
14. Was George working at the time of diagnosis, and if so, how did it impact his work?
He worked until 2010. He had to give up as his movements in a warehouse environment were limited and he couldn’t handle the heat.
15. How did his condition alter your relationship with family and friends?
Our family members were aware and had no problems but he didn’t want to socialise as people could not really understand him and they really didn’t know what to say to him.
16. What sort of support systems did you think he needed that he lacked during treatment?
We were quite lucky and had the support of Kingston Movement Disorder Centre who advised and assisted us along the way. However, waiting on support from SWEP [State-wide Assistance Programme] could be quite long. We waited over 12 months just for a wheelchair. Similarly, the Aged Care list was extremely long and had to wait over 16 months after he was diagnosed with MSA before we received a [home care] package. That package was only given to us after the hospital contacted them again advising them he was quickly deteriorating. I needed assistance immediately [as] only then could I access in-home Allied Care for him.
17. Were there any financial burdens that you have faced as a result of this?
There were enormous financial burdens. He gave up work in 2010 due to the Parkinson’s disease, and I [did so] in 2015 as it was no longer safe for him to stay at home by himself.
Once the bladder and bowel problems started, we then had the expense of having to buy products. Although we had a yearly incontinence package of $570, it did not cover anywhere near the actual cost, the cost of the numerous medications, vitamins etc. This could be quite daunting at times. Equipment was also very costly and waiting for SWEP or the Aged Care package to be made available was too long causing more financial strain.
18. Is there anything else you would like to share about your experience?
Unfortunately each person’s journey is different, each individual needs to try and analyse the easiest and best way to live with this horrid disease as it’s relentless. Learn as much as you can about the disease and try to tap into as many services as you can prior to needing them as this could save a lot of time and money when you actually need them.
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