JB Progress

I recently had a PEG fitted at the John Radcliffe Hospital. It involved admission on a Monday evening, fitting on Tuesday, going home on Wednesday. Sandie drove me to the hospital, which was unusually quiet for us, it being an evening. I was admitted to the Neuroscience Ward in the West Wing into a 4 bed bay. I sat in my chair by the bed for some hours. Prof Martin Turner visited and we had a nice chat. Eventually two nurses came to hoist me into bed, but made a complete mess of it, nearly dumping me on the floor. Eventually they summoned two experienced nurses, who did the job in 10 minutes. On Tuesday morning me and my bed were trundled through long corridors and lifts to Endoscopy. I was accompanied by a trainee nurse, who wanted to witness the operation. After another wait I was wheeled into the operating room. I was lightly sedated, my breathing being compromised, which still made the 15 minute process easy to undergo. I was then moved to a recovery area. My heart rate went up

We visited Respiratory Medicine in the Royal Berkshire Hospital on Monday 10th February, ostensibly to see a physiotherapist. I imagined it would be a session on things such as how to cough better. in fact, it turned out to be a session where they loaned me the two key breathing machines and let me try them out. A BiPap is a machine that connects to you via a face mask. It senses when you breathe in and pumps more air into your lungs than you could manage on your own. It lets you breathe out by yourself. It takes a bit of time to get in control of the machine, rather than it being in control of you. The benefit to someone like me, with impaired breathing, is that it gets more oxygen into your blood and removes more CO2.  Here's a photo of me trying it out:  A Cough Assist machine also connects to you via a face mask. It fills up your lungs with air, then drags it out hard and fast, simulating a cough. Hopefully it thereby drags any phlegm into your mouth. I'm still get

Sandie and I went to the JR on 27th January for my three monthly checkup. I saw Professor Talbot. I raised the subject of having a feeding tube fitted, as my reduced lung capacity means getting it done needs to happen by mid year. He debated PEG vs RIG and JR vs RBH, then said he’d consult Jane Owen. He was in favour of getting on with it. I then saw Jenny Rolfe, at my request. I raised the subject of uncomfortable seat cushions for the power chair. She recommended a Vicair and said she’d send me one. She talked about how it contained what she called “tea bags”, each filled with air.  After that, I saw Thanuja, who suggested using a nebuliser to help shift phlegm.

Sandie drove me in the WAV to Reading last Monday 23rd December for an appointment at the respiratory clinic in the Royal Berks hospital. We got up at 6am, so as to get into town early, parked in the Oracle and had breakfast at Cote Brasserie.  We then walked and rolled to RBH and found the right waiting area. While waiting, I was asked my a smiley nurse for my weight, then a little later for my height. Then they wanted to measure my arm span. All rather odd, I thought, for breathing tests. I later realised that these measurements can be used to calculate lung capacity. Then we went into a room with a breathing machine, where I did everything imaginable and more with a tube that you clamp your lips over. How much air can you blow out?  What pressure can you exert, sucking or blowing? And so on. The strangest was being asked to draw in a mixture of air, helium and carbon monoxide and hold it in for 8 seconds. The upshot is that my lung capacity has reduced from 4 litres to a bit u

MND has reached its tentacles into my neck muscles, causing my head to droop forward. This is a common thing to happen to people living with MND. My first move was to buy a Head Up Collar, that was designed by Sheffield University, now made by  https://www.talarmade.com/products/headup-collar/ You get a velcro collar, shaped like a snood, and a kit of 20 or so plastic shapes, which you stick on the collar to provide support where needed. I later found out from health professionals that this device is not that popular with users and my experience confirmed that. It is complicated to customise and not that comfortable. But better than nothing. I then found that using the power wheelchair with backrest tilted backwards helped the floppy head no end. Then, fitting the headrest to it, with an attached elasticated band round my forehead, found it works very well. So I have stopped using my manual wheelchair in favour of the power one. The photo below shows the HeadUp Collar fitted

I now have a ceiling hoist installed in the bedroom. It's a Handimove hoist that goes anywhere in the bedroom. You can watch videos of it in operation https://www.handimove.com/products/ceiling-motor/ It uses a gadget called a Body Support that holds you firmly, avoiding the need for a sling. So it's quicker and easier to get into or out of. It has two large hooks that go under your thighs and two pads that grasp you round your chest. Here's a photo of it, showing the hoist motor above it. Over a couple of weeks, we've worked out workflows for the main operations: Getting out of bed and dressed Getting undressed and into bed Doing a loo run  It's quicker and easier than doing transfers with a board. It makes life easier for Sandie, particularly with awkward operations like getting trousers on and off. It works well in conjunction with the hospital bed. It's now in use several times each day.