I wrote a brief piece about how MS-related balance issues present, for people who don’t suffer from it but care for and/or love people for whom it’s an issue to try to explain in as much detail as possible how it is.
A few people said they really enjoyed it and found it useful, and a couple of them suggested mailing it to the MS Society, so here I am.
I quote the piece below, and grant the MS Society a non-exclusive, perpetual licence to reprint and edit it in any media. Credit is appreciated (Dave Williams, [email protected] mailto:[email protected]) but not required.
My hope is that it helps people, in any case. As I say, credit appreciated but not required, and you can edit as necessary. I’d be grateful if you could let me know anything you decide to do with it, but again, that’s not required.
I'd like to use your attention for a moment to ask that people don't underestimate what "balance issues" means. I understand that to many this will be like teaching you to suck eggs, but I wrote the thing and thought it was a decent summary that others might find useful, and there are probably carers out there who might find it useful.
For about a year now the world has been permanently spinning because of lesions on my cerebellum.It will be for the rest of my life, the damage is done and won't get fixed. In fact, it'll get worse as more lesions appear and my brain gets increasingly scarred. It's not reduced over time, I've just learned to protect myself a bit more and to avoid things that make it worse.
The other day, I fell over from standing completely still.
The world shifted sideways, and I reflexively compensated, as anyone would if for example you were on a boat or plane and it suddenly took a turn or capsized; the response came, as it always does, before having a chance to process it on any conscious level. If the world had shifted, I would have then kept standing.
But it hadn’t.
So I operate on false information and respond to something that doesn't exist, and end up on my arse. The number of times I've injured myself is pretty hilarious at this point, I've got multiple inches-deep gashes in my legs from falling on things made of metal.
I'm not looking for thoughts and prayers here, but I do want people who don't experience it to try to understand how radically crippling it is.
Anyway there we go, it’s all yours.
Cheers!