Stephen's story
I have MSA-C, a rare neurological condition that came on in my early 60s, primarily caused in my case by the shrinking of my cerebellum, although there is a more common form (but still rare, 1-3 in 100,000 people) which looks a bit like Parkinson’s Disease. MSA stands for Multiple Systems Atrophy as, like many neurological conditions, it is degenerative (in my case the cerebellum, which controls messages getting from the brain to the relevant muscles, is likely to continue shrinking) and it can affect multiple systems in the body. The autonomic systems, such as digestion, bowels, bladder, blood pressure etc are also affected, although people can experience a range of different symptoms. Fine motor movement, such as handwriting, are often the first to be affected, as it was with me.
I first began to notice some strange symptoms in 2014 such as night sweats, violent dreams and deterioration of my handwriting, although they were a puzzle to my GP and I. My walking and balance also deteriorated, I no longer felt safe riding a bike and was awaiting an Ear Nose and Throat specialist’s appointment when I had a TIA/warning stroke in mid-2018. I was hospitalised and had a number of tests including an MRI scan. This revealed the shrunk cerebellum but I did not fully understand the serious significance of this at the time. I attended the stroke clinic a month after the TIA and this was explained to me; however, no referral was made by the stroke doctor.
I asked my GP for a referral to a neurologist but as it looked likely that I would not get to see the neurologist who visits our local hospital for at least three months (it was actually nearer nine months before I saw him), I travelled six hours on the bus to consult a neurologist privately. As he consults to more than one hospital within the same health area I live in, he was able to gain access to the MRI scan results. With reading the scan plus his observations, he was able to give a diagnosis of probable MSA-C, although the only way to confirm this is by a post-mortem autopsy as there are no definitive blood or other tests for MSA.
Since this diagnosis in October 2018, I have seen a speech therapist at the local hospital and had several visits from occupational therapists and members of the physiotherapy team, and seen the visiting neurologist twice (I did not see him in 2020 due to the Covid-19 pandemic but have kept in touch with his nurse at the local DHB). Getting information, advice and care is difficult as most GPs have never dealt with MSA and even my neurologist has only seen 3-4 cases of MSA in his 30+ years of medical career. It took me over a year to find out that Parkinson’s NZ nurse-educators covered MSA too and am in regular contact with our local nurse-educator who has been able to provide some advice and advocacy.
I have also joined up to several MSA groups on Facebook and other platforms. Despite these being mostly contributed to by patients and their family members rather than medical professionals, and being mostly run by people from overseas where the health and welfare systems are very different, these have been very helpful. Note that at this stage there are no medications that are proven to slow the deterioration and devastation caused by MSA but some symptoms can be dealt with by various medical and pharmaceutical interventions.
I have also explored a variety of alternative approaches in New Zealand and overseas, and take a variety of herbal supplements daily along with medication which my GP hopes will prevent further strokes.
Through several of these patient groups I made contact with Defeat MSA Alliance in the US, where more research has been done and has a much larger number of MSA patients due to having a bigger population. We have recently formed an organisation known as Defeat MSA Down Under to cover New Zealand and Australia and headquartered in Melbourne, Victoria. We have registered trusts in both Australia and New Zealand, with three NZ resident trustees and two overseas members. I am the patient advocate on the NZ trust and we’re in the process of forming alliances with other groups including Rare Disorders NZ and raising awareness of MSA amongst relevant medical professionals. See our website Defeat MSA Down Under and our Facebook page.
I attended the Fair for Rare NZ petition handover at Parliament on 24 March 2021 as in my own experience of not having clear pathways of diagnosis, treatment and care, has led me to waste a lot of precious time and energy on navigating our health system. Others in our MSA community have lost the ability to speak (a common issue with MSA) which makes this journey even more intolerable.
I do not qualify for a Community Services Card to date. To this point I cannot access any government-funded support services, as I am relatively mobile and independent and considered not sick enough for any in-home support, despite having a serious life-shortening condition, experiencing some autonomic symptoms, having walking and balance issues, am easily fatigued and at present live alone. I go to the gym most days, have weekly acupuncture sessions, receive two hours of home help each week, take a daily dose of CBD oil and have a St John medical alarm, all of which I fund myself at a cost of around $550 a month.