To my friend Lou whose father, locked-in after stroke, is now suffering from a chest infection:
For me it started with a sharp pain as I was getting pushed back from therapy one day and I just had to tell Jade. It was like a stitch you get when you’ve been running….only I hadn’t been running for a long time!
I just knew something was amiss; so did Jade who reported my stitch to the medical team straightaway. In turn, I was immediately booked in for an X-ray which showed I had a nasty bout of pneumonia. Seems I’d aspirated food or fluid….whichever, something had gone down the wrong way, ending up in my lung. Antibiotics worked (thank God for me!) but they can become ineffective after a while as the patient grows immune….Just something to watch!
Oh and one more thing used to piss me off: I couldn’t fart!! Seriously, I couldn’t pass wind in my wheelchair so gases built up and when they hoisted me (craned me) upwards….well! Talk about Vesuvius! The pong was incredible – it could clear a room with all the drugs I was on!! – permeating through the ward like you wouldn’t BELIEVE, faster than a nuclear bomb! Something else to bear in mind! The build-up of wind gets painful ey!!!
You don’t have the muscles to squeeze!
Apart from that, being in the chair is good for the neck, strengthening it over time – it also helps the back, the chest and obliques. Of course, you can’t just go straight into a wheelchair; you have to build up the time spend in it so your body can acclimatise.
Good for me or not, I hated being in the chair; it hurt my ass (No muscles, see – just bone! Arrrrggghh!) So it was a case of building up gradually to 15 extra minutes a day.
If I think of anything else, I will get back to ya, Meantime, good look with that bloody chest!!
I still remember coughing up too, through my trachea and it was the most disgusting experience ever! Ooooh God! I feel for him and all other LIS sufferers.
Unfortunately, you can’t be there to make this happen, but I hope you get a team of nurses who can go the extra mile like mine, ‘cos you need to be watched in the chair. A few times I fell to one side and couldn’t correct myself, so was hanging helplessly to the left for half hour! It hurt and I couldn’t shout out – I just cried inside and prayed to God for someone to come!!
You can’t be there all the time but, for the benefit of any medical staff reading this, in those early stages I think locked-in patients should be monitored with 5 -10 min checks, even if they’re just a quick head round the door. That’s my opinion anyway. I hope things go well for you!
For more information about locked-in syndrome recovery, check out my book, “In the Blink of an Eye”, available from Amazon.