So, legions of adoring fans, I haven’t written for a while. ‘Lesions’ of adoring fans, if you know your MS stuff and like a bad pun. The complaints at my deafening silence have been flooding in. Not really. Am not sure anyone has noticed. Hey ho! I have lots of draft blogs which are nearly there, honest…
Writing and thinking is therapy anyway, and probably stimulation for my foggy brain. ‘Cos that’s what it is. Foggy. Cloudy. Hazy. As if I were simultaneously a brain forecaster for Mark Webb and for UK weather. I can confidently predict more mist and storms to come. With rare but glorious clear spells.
Look at me sat in a wheelchair and you guess, correctly, I have the teeniest of ‘challenges’ with my legs. As well as vertigo and balance as it happens. Look at me speeding, in relative terms, off to the loo and you suspect I have bladder issues or worse. And yes, the giveaway is in my blog’s title. And my choice of underwear.
Talk to me for long enough – or on a regular basis – and you might just start to notice stumbling in my speech; a lost line in conversation; a brief glazing over. Even on the nights that don’t feature tequila. Close friends and family are aware and quietly fill in the gaps. I see my poor long-suffering wife and children roll their eyes as I repeat a story or ask the same question for the umpteenth time.
The brain mess aspect of MS is almost impossible to explain, and I rarely try to. When I do, I am invariably met with the response ‘yeah, that happens to me’. As if what is happening is just the same for all us middle-aged fogeys out there, with or without a chronic illness of the central nervous system…
Anyway, below is a sliced-through image of a brain under attack from Multiple Sclerosis. Or more accurately a brain under attack from its own, befuddled and confused immune system. Brought on by MS. I think. See the growing cotton-wool-esque lumps of white spreading through the brain? (and more auto-immune bombardment is happening down the spine as it happens). Well over the decades I’ve collected lots of blobs of that ickiness.
And wherever MS has done a bombing run and left scarring (‘Sclerosis’ is Latin for ‘hardening’), some nerves in my body will not be getting a clear signal. Or any signal at all. The ‘faulty wiring = damaged nerves’ analogy to explain how instructions to my limbs don’t get through is a good one. But it’s less easy to simply explain the mess my brain and thinking processes are in…
The ever-helpful https://www.mstrust.org.uk site breaks out the following grey matter challenges: Memory; Word Finding; Concentration and Attention; Information Processing; Visuospatial Abilities; Planning and Problem Solving. I think I can claim the full set, yay! I’ll try to explain my own flavour of fogginess.
Memory. Shocking short term, poor mid-term. Clear, almost accentuated long-term. From one sentence to the next, one conversation, one misplaced-in-the-house set of whatever’s, I often just haven’t a clue. And as to ‘mid-term’ my children and my wife can get away with murder if they claim to have told me something or ‘done something’ already. Mine not to reason why… I remember speaking at a conference, and coming up with three clear points to make. Got to the third, had totally lost the thread. I made a bad joke and quickly moved on. Cringing in front of 500 people.
Long-term memory can stay clear please. Especially if I am to finish this book I keep talking about. I just need to deal with the concentration bit. (See below)
Word Finding. This one has crept up on me. Once upon a time it was ‘onomatopoeia’ or ‘pterodactyl’. Now it can be ‘dog’ or ‘purple’. Every missed word I’m conscious of is just a bit painful, but whilst my brain is struggling in a significant way, it is also very clever at finding workarounds to get the message across. Woof! Physios often tell me my body has also found clever ways of functioning in a cheaty kind of way without the help of certain sets of muscles. Super sneaky!
Concentration and Attention. Sorry, what were you saying? Ah yes. Concentration. And attention. And concentration. Never a strong point of mine as I breezed through young life thinking only of beer and rugby and girls. But now it is bloody awful. This blog alone will have taken twenty brief visits before I come close to publishing it. A paragraph here, a sentence there and I’m off, fascinated by the wall in front of me or the distant call of a biscuit. Focus? That is definitely one of my lost words! Every so often I can sense all the ‘cotton-wool-clouds’ parting and I rush to do something useful and productive. Each time this occurs I have no idea how long that particular gift of a gap will last…
Information Processing. Two areas of pain here. Firstly looking, staring, squinting at a graph or a presentation which once I’d have easily produced myself at the drop of a slide projector. Now? Haven’t a scooby doo. Just as with word-finding, I can almost see what I need to grasp. But it’s just beyond that bit of cotton wool in my brain, never to be passed. I can’t understand. Just can’t. And secondly when the long-suffering Mrs W explains something that has happened or something that needs to be done. Sorry, darling. She may as well tell the cat, for all he cares.
Visuospatial Abilities. This one is über-weird. And I guess it is one of the reasons that over the years and umpteen assessments by neurologists, physios, MS Nurses and assorted other gurus, I have been asked to reach out and touch someone’s finger and bring it back to my nose. And to repeat it. Basically, I think, my brain can’t interpret what it sees as well as it should. Notably distances and speeds. Hurrah. Not only do I stumble anyway because, you know, MS. But also because I misjudge door frames. Where exactly a chair is. When I’m going to get there. Exactly where the fork I should pick up is. You’ll interpret it as me being clumsy. So there, I have an excuse for being fumbly crap. Phew. Doesn’t stop Mrs W tutting every so often though. Crash! Slam! Bam! Oops! Sorry! Life with me is so peaceful. If I use this skill wisely though, it’s a wonderful excuse to grab hold of my wife out of the blue. 20 years married next week and still fancy her pants.
Planning and Problem Solving
The final one. I write a ‘To Do’ list every day. Partly because of the memory thing (see above), lots because I really can be bloody awful at planning now. Once upon a time, organising a conference for a thousand people, or indeed our wedding, was something of a doddle and part of my remit. Now planning anything major like say, going away for a night, or going out on the spur of the moment brings me out in a cold sweat. The mist descends and Mrs W calmly takes on yet another responsibility. I feel utterly helpless in these moments. I can almost see those bloody lumps of wool in my head holding up cruel little ‘Stop’ signs as I try to stumble my way through to achieving something even minor.
So there you have it . ‘Cog fog’ we call it. Cognitive Dysfunction the clever people do. I remembered complicated words! Whoop whoop. My Cog Fogginess is, I understand, unlikely to get too much worse too quickly. Which is nice.