Living with MSA – Liz’s Story

I am 84 and this is the story of a happy unexpected second marriage alongside the development of a rather nasty neurological disease.

In 2016, when I met Mike, the man (who was to become my wonderful second husband) he noticed a slight tendency for me to be wobbly on my feet. I’m not sure when it started but I have never been very coordinated – always as a child being seen as clumsy. I was hopeless at gym, rounders and anything requiring good hand and eye coordination. I took enjoyable refuge in academic things – reading, researching and writing. As an adult I had a long and happy relationship with a much older man, with whom I enjoyed walking with but that was about the extent of my physical prowess! After his death I spent many years on my own. I used to go swimming (not very well) and still do a reasonable amount of walking.

However, the first-time my balance was a real problem was some little time after Mike and I married in 2017. It was a sunny summer’s day, and we had gone for a walk by the cathedral here in Hereford. We always held hands when we were out but suddenly Mike’s hat flew off when a breeze caught it. He let go of my hand in order to catch it and, with my as then undiagnosed balance problem,

I flew over landing up flat on my face – bruised but otherwise unhurt.

My balance continued to get worse and after several falls in May 2020 I saw a neurologist who diagnosed ‘cerebral/cerebellar atrophy commensurate with age; compensatory dilatation of the ventricles; a loss of balance with no particular cause found… really only has gait ataxia’. Not a very helpful diagnosis but a one-way street inasmuch as I knew things would only get worse. And indeed they did.

In April 2021 I had a momentary blackout two days in a row. I went to A and E and had various tests, but no problems were found. In June I fell getting into a taxi; in August I had a collapse in the street. An ambulance was called, and the paramedics checked me over. Not surprisingly my heart was racing but it settled down after a while and I did not go to hospital. There was another episode in September when I blanked out momentarily and fell. Shortly after this had a loop recorder fitted but it was removed a couple of months later nothing having been found. When I saw the neurologist again he diagnosed MSA-C and prescribed Sinemet (12.5/50 mg) 2-3 times a day.

All this time my balance was getting worse. I progressed from using a stick to using a stick and Mike’s hand. About a year ago I began to use a walker and at night I needed to use a walker between the bed and the loo. At the same time life closed down in other ways – I could no longer be a cathedral guide as I couldn’t walk well enough. I used to do research in the cathedral library but by this time, I needed to take the lift rather than the stairs. On my last visit there the lift stopped working between floors and I was trapped on my own for a little more than an hour. Then the library was closed throughout the Covid pandemic. Although the lift was replaced, I didn’t feel confident about using it or about getting about even if I did access the library.

Things continue to deteriorate ~ I now have a commode by the side of the bed, which is a help even though I was initially unhappy about it. And I need a wheelchair when I go out, although I also have a mobility scooter which, because we’ve had such a rotten summer, I haven’t used very much.

I am so lucky to have Mike’s love and support. We have a carer coming in daily, which helps with daily chores and giving me a hand in the shower. We shop online, have a cleaner and help with the garden. I do get low and frustrated from time to time but I love reading, researching and writing so I don’t get bored. I think I am very blessed in my marriage and in having enthusiasms which don’t require me going far afield. I have done a lot of non-fiction writing (have had 4 books published) but I have just signed up for a creative writing course to see if I can develop another kind of writing skill. Life, even with a chronic condition, can still be full of blessings.

Disclaimer: The views and opinions expressed in the member stories published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.

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