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.
