My Multiple Sclerosis’d brain is shrinking!

One of the technical terms I use to describe MS damage to the central nervous system in my brain and spinal cord is ‘icky’. That covers everything off pretty well. My own sodding immune system is wading into the protective sheath around my nerves and leaving permanent scarring, hardening and damage. Not strategically or predictably. Totally randomly.

My immune system ‘bomb runs’ show up on MRI scans like small blobs of cotton wool or some well-chomped, discarded chewing gum. Icky. Classics lesson for you: ‘Sclerosis’ comes from the Greek σκληρός sklērós, “hard”. (ie ‘hardening’, ‘scars’, ‘ewww’)

Chewing gum and cotton wool on a brain, yesterday

Doubly icky is the knowledge that my actual brain is shrinking. ‘Brain atrophy’ is, I think, the proper term. Happens to us all as we age. Just a little or a lot faster with Multiple Sclerosis.

A ‘normal’ brain is an average of 15% smaller at age 75 than it was at 25. Luckily, due to a typo, I am actually spot on at 25, and not 52 as my birth certificate would have you believe. A ‘Multiple Sclerosis’ brain shrinks significantly faster, apparently. That’s all I need to know and frankly I don’t like it much.

Triply icky is what’s actually happening as a result. And it’s horrible. I don’t know whether it’s the shrinky bit or the scary scarry bit that actually impacts me more. But the cognitive symptoms are as obvious to Mrs W and anyone close to me as my wheelchair, my spasms, or Kate Winslet’s love for me.

Me, age 25 and at peak brain power. Painting Kate Winslet yesterday.

What’s been going on then?

Well I date my first symptoms back to 1992 and I can only think of bladder issues and pins & needles at the time. My long-term memory is sharp. Sharpened even? Wishful thinking perhaps.

Over the following years – I was actually diagnosed in 2007 – all sorts went on brain-wise. I developed a reputation for clumsiness. My bad jokes got worse. My short-term memory played tricks. I failed to recognise faces or to put names to them. Concentration? Dodgier even than my clothing choices. Spatial awareness went out the window and my crappy driving got crappier. I got tired, very tired.

There’s a chunk of middle-aged, able-minded people right now mouthing or chuckling, ‘oh yeah, me too!’. I get that. But please don’t ever, ever say that to me or any other MSer. Or to lots more chronic conditions peeps I imagine. For us it runs deeper. More painfully. More forever-y. More every-moment-y. Heartbreakingly.

See how much I can blame on Multiple Sclerosis? Very cool.

What’s different now then you blithering numpty?

Well, nothing really. I’m more aware of memory issues and that they’re worse. I notice it myself. I see more eye-rolls from my wife and my children. I send myself a ‘To Do List’ every day, but I’ve done that for years.

My effective hours in the day are reduced. The rest of the time I’m asleep. Or dozing. Or dozy. I need to pick and choose what I do with those precious moments when I can claim to be fully functioning. I bloody love my public speaking, campaigning, telly appearances. And meetings where I pretend to be wise and professional. But I know that following these highs, I need to set aside serious downtime.

My ‘filter’ isn’t functioning well apparently. Timing of interjections, comments, bad jokes. That kind of something I’m just not aware of. I don’t like the fact that I may be confusing or at moments upsetting people as I blunder in with my brain-fireworks. I think I just need to filter my lack of filter. Bite my tongue from time to time. Be aware I’m a nightmare waiting to misfire.

What can I do?

To an extent, nothing. It is what it is, a progressive illness.

But daily, slightly obsessive exercise has helped slow some disease progress down. And even reverse the odd muscle previously in decline…

Leo di Caprio exercising in pyjamas, yesterday

My brain can be exercised too. Probably with mixed results but worth a try? Any brain work-out suggestions gratefully received! Hurry up before I forget what I was rambling on about…