So, I went to my 3 monthly MND clinic appointment last Monday. I have had 3 courses of antibiotics for chest infections since Christmas and so I was interested to see what the team thought was the next step. Do I go on antibiotics full time or is there something else?
They thought I should put Audrey back in business part time – get my calories via the PEG tube and “eat for pleasure” – which basically means eating lots of chocolate puddings.
My MND nurse, Rachael, is a brilliant advocate for me; she got straight on the phone to the ventilation unit at the Churchill Hospital and asked if they could see me today – they ended up seeing me straight away. So we popped into the Churchill after the appointment. I went straight in to see the physio and they took the usual measurements – my cough was stronger than last time and they gave me a new gadget – a Cough Assist.
It is basically a fancy pump that pumps air into your lunge to inflate them – and then switches to sucking – to help you do a big cough. It feels like your lungs have been hoovered – in a nice way – leaves them feeling really clear.
Ben tried it and he said it reminded him of the Scream Extractor from Monster Inc. So that’s its new name – or SE for short.
The NHS is fabulous – everyone we meet is so keen to help, solve issues and make this journey more comfortable.
Over the last week – I have been coughing less. I use the Scream Extractor twice a day and it keeps things clear. I haven’t coughed all night since using it, much to Julia’s relief.
It also allows me to take some risks and eat blended food now and again – Saturday the lads from the neighbourhood got together, ordered an Indian take away and blended mine. The beer messed up my voice but it was worth it. A brilliant evening. Mike even did the hot towels!
If you are in to praying – please pray that I’ll not get any more chest infections or coughs.