A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Friday 29 May 2020

The way it is

We were meant to be in Menorca this week.

It was going to be the first time we'd taken our daughter abroad; but thanks to Covid-19, we are here and not there.

So, what to do?

a) be grateful we're well
b) accept the circumstances
c) check the weather...
d) ...and confirm the temperature here is EXACTLY THE SAME AS IT IS THERE
e) blow up the paddling pool
f) pull on the swimsuits
g) use our imaginations because
h) is for holiday



:: The way it is by Bruce Hornsby and The Range

Friday 22 May 2020

Fall at your feet

It's all got a bit much this week and I'm therefore struggling with knock-on symptoms.
The only way to deal is with a bath, a cuppa and some lovely music.
Enjoy this week's tune from some superb songwriters.



:: Fall at your feet by Crowded House


Friday 15 May 2020

Lazy

I am in the lucky position (especially at the moment) of being able to work from home.

I work in communications and a lot of it is as you'd expect - sitting at a keyboard typing, hunched at a makeshift desk planning or Skyping into meetings and trying to say something useful.

At the moment I'm in the middle of writing and uploading some online training for a national children's charity. I've been learning some new digital stuff from a very helpful chap at a company in Serbia.

So the work calls have been a little different - usual chit chat about work, bit of weather comparison and then a resume of whatever new Covid-19 announcements have been made in our relevant countries.

Fascinating to see how different places are dealing.

So it's all very positive and very busy - but good heavens I am exhausted. And doesn't my MS know it

Numb hands, permanent hug, terrible balance - they're not new symptoms, they're all very, very familiar. And I know they're rearing their heads to unpleasant levels simply because I'm so shattered.

Really, what I want to be doing now is just being hugely lazy for, ooooh, about a week. Yes, just a week to be utterly and completely and unashamedly slothful.

And then I'll be able to get back into it.  Promise.


:: Lazy by Suede


Thursday 7 May 2020

Green, green grass of home

Covid-19: take precautions, stay safe, avoid unnecessary journeys.

Cat: now would be the ideal time to eat a massive blade of grass, get it trapped round my palate, sneeze it up through my nose, force two non-contact vets trips and require the use of forceps.
Look at my lovely grass trophy.


:: Green, green grass of home by Tom Jones


Friday 1 May 2020

Fire

In order to cheer myself up in the middle of this pandemic, I thought I'd do a wee bit of scrolling through Twitter to find some cat memes.

What I actually stumbled upon, due partly to the organisations and people I follow, was a discussion about something called 'smouldering MS.'

Now to me, smouldering conjures up images of heavy-lidded Hollywood goddess Lauren Bacall. It does not, for example, suggest chronic active MS lesions.

Or so I thought. But my Twitter foray lead me to an article about smouldering MS and my word it's a cheering read.

According to the piece on the MS Trust website, a team of researchers have developed a new MRI technique which makes it possible to capture a type of lesion with a dark rim, which grow slowly for many years.

These lesions can appear regardless of the type of MS or - crucially - whether people were, or had ever, taken a DMT. 

The study showed that "people who had four or more smouldering lesions were more likely to have developed cognitive and mobility problems at an earlier age, have lower brain volume and were more likely to have MS that had become progressive, when compared to people with no smouldering lesions."

Plus, "in a subset of people who had yearly MRI scans for 10 years or longer, rimless lesions shrank over time, but chronic active lesions remained the same size or expanded. Smouldering lesions showed MRI features typical of on-going tissue destruction."

The cheerful conclusion to the research indicates that smouldering lesions are common in MS, are associated with a more aggressive course of MS, cause tissue dame, and (this really is the kicker) occur even in people taking effective DMTs.

So, thanks Twitter, that's cheered me up no end. And also given me some questions for my neurologist whenever it is I can next see him.

Sigh.