It’s surprising how quickly something that was completely alien to you becomes the norm
MSA Multiple System Atrophy
Never heard of the thing have you? Well I know all about it now, I’ve spent a week soaking it up like a sponge. This is what Ma has.
It’s quite rare (bloody woman couldn’t just get something normal could she!) it mimics Parkinson’s early on, hence why she’s been treated for that for 2 years now and there’s no cure. It’s terminal.
It’s a strange thing being told this, I think because we don’t know anyone with it, it’s not on the telly, there’s no celebrity raising awareness of it, it’s an unknown entity. And for me certainly that kinda takes away the ‘terminal’ thing.
It’s like the start of a journey, we don’t know how long that journey will be, I’ve read people can live for anything from 3 to 15 years. And what happens during that time varies a lot. Having said that Ma has deteriorated so much in the last year I think we will be at the lower end of time.
Her autonomic functions will stop working, some already have, some are on their way. Blood pressure control, toilet control, swallowing, speech, mobility, vision. Everything we don’t consciously control. It’s a daunting prospect and paints a grim picture.
I don’t think she fully understands yet. The Drs have told her she has this, but have yet to tell her what will happen, what to expect. That will come soon I’m sure.
I’m very aware that people who know me will be not knowing what to say, and I’m also aware that it’s not what people want to hear about all the time, it’s like a big elephant just entered the room and filled all the space.
It’s quite lonely to be fair, I would always talk to Ma when things were tough and I can’t do that this time. Im hoping blogging may fill the void in some way.
We will see