16 Mar, 2021

Odds and Ends …

Today, for want of anything better – or rather, for want of inspiration – here are a few random bits and pieces in the immediate DP world.

Sunday’s 7am self-administered Covid swab test kit was collected at 11am.  The result came through yesterday morning, 24 hours later. Negative.  So all’s well; I’m self-isolating; and the hospital will send transport tomorrow morning to get me to the Complex Care Centre for the one night sleep study.

Here’s a machine.  It makes one helluva noise.  When they said they were providing a ‘suction device’ to try to clear liquids in the mouth and prevent choking, I thought innocently of the dentist equivalent.  This isn’t that.  It does remove some annoying secretions, though as soon as I remove the tube they flow in again.  But it’s noisy.  And bulky.  And not exactly what you want at the side of the sofa.  But it’s better than nothing.

Yesterday I said the Zoom discussion had over 50 attendees. Numerically that’s still true because now it looks like it was between 70 and 80.  And probably more nationalities than those I listed.  If anyone wants to see it, hover over the ‘Media’ tab in the navigation bar at the top, then click ‘Zoom Talk.

Here’s another machine. It’s a nebuliser.  With a mask over the nose and mouth, or a nozzle up the nostril (I like that phrase), I breathe in micro-drops of saline water.  It’s supposed to ease muscles in the lungs and nasal cavities.  Urgh!  It’s also at the side of the sofa.

In the 24 hours since the Zoom talk around £800 has been donated to the Fund.  We continue promoting that, urging donors to encourage others. And now there’s another initiative to boost the Fund, this time via social media.  It’s the ‘MND Art Challenge’, inviting anyone of any age – kiddies to wrinklies – to share a pic of something creative they’ve made, then to donate something, and then to nominate five others to do the same.  Full details via the link above.

Join me in my daily diet?  One litre of water, six 400ml bottles of Ensure and one 120ml bottle of Procal.  That’s it, every day. 

Yet another contraption expected, though not guaranteed.  Depending on the sleep study on Wednesday they might give me a ‘cough assist’ machine, designed to help the lungs deliver coughs strong enough to clear anything that’s gone down the throat.  Also next to the sofa?  Oh dear!

Finally, as I know you all love to see me, here’s that oh-so-uncomfortable neck brace.  If I’m sitting in a chair with a back rest, the head’s fine.  If not, when I’m standing or walking, it slumps down on the chest.  In the flat I can cope with that but outside, although pavements and road markings and grass are fascinating, it’s also useful to be able to look ahead at people and traffic – wouldn’t you agree?  That’s what the brace is for.

I’ve exaggerated a little.  If you know anyone with MND/ALS, tell them that these things do help. They might not be elegant or easy to use, but they do help.  They’re not so bad.  Thank you.

 

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