Health update Monday 5th November 2018

Yes, it is 5 November and I have not written an update on my health in nearly 6 months. A lot has happened since May and it is time I put my news on here so that my family and friends can stay up to date with how things are with me now.

Today being the anniversary of an attack on Parliament 413 years ago, over the weekend that has just gone I have been hearing fireworks which various people in my neighbourhood have been amusing their families with, but fireworks have never been of much interest to me, so I have not been outside watching them, although I caught a glimpse of one or two through a window.

My motor neurone disease continues to dominate each day, as it will now for the (perhaps quite short) remainder of my life.

After the last of a number of consultations with the neurology consultant in March and April, the next appointment with the consultant was in August, as the standard interval between appointments is now four months. I went in to Frimley Park Hospital in August and updated the neurologist on how the disease was affecting me. The next appointment with her is in December 2018, so after another interval of four months.

I now have carers coming in from one care agency around lunchtime and in late afternoon for up to half-an-hour each time, and I have a carer from a different care agency coming in at 22:00 each night and sitting up until 07:00, before leaving while I am asleep. That is to ensure that the breathing machine does not fail during the night, which could be fatal if I did not wake up and get up, because I cannot breathe without the machine while lying down.

Respironics machine failure

In late August, I did have two occasions when the BiPAP A40 machine went into failure mode. The screen went red except for a message “Ventilator Inoperative” and a quite loud tone sounded, which woke me up. The first time this happened, it was 06:15 on Monday morning, 27 August. The machine was not working to help me breathe, so I had to use the electric mattress lift on the hospital bed to sit up, then take off the breathing mask, after which I looked at the BiPAP machine to see what was going on. I decided that I should try to take a photograph of the machine to send to the respiration practitioner nurse at Frimley Park Hospital who provided the machine. I managed to do that (as you see) and later sent him an email with the photo.

That morning, I did not try to sleep again, and after checking that the machine was plugged in to the mains power so that the battery would be fully charged, I began my day. That evening I decided to use the same machine when I went to bed, as it was showing a full battery, good mains power connection, and it seemed to be in normal working order again. So that night, Monday night to Tuesday morning, it worked perfectly fine. But although it appeared all right Tuesday night, the machine went into inoperative mode again at 03:31 on Wednesday morning!

Again, I reported this by email; and again, after checking the machine on Wednesday night, I was able to sleep right through to Thursday morning without any failure from the machine. But on Thursday I received an email from a lady who is a Specialist Physiotherapist in Sleep and Ventilation at Frimley Park Hospital (her thing said). She told me she was going to drive down from the hospital that afternoon to bring me a replacement BiPAP A40. This she duly did, and she took away the machine which had declared itself inoperative twice. While here, she installed in the bedroom the spare machine which I had been provided with earlier in the year, and placed the new machine which she brought with her in the place where I had been keeping the spare machine until that day.