Simonie

I had a valuable and touching phone conversation with Simonie, whose husband Sid died at home of MND a year ago. She sings in the same choir as a sailing friend of mine near Telford.  The story of her husband's illness has many familiar elements, but also new ones, as MND care has moved on considerably in the last 30 years.  It underlined for me just how taxing is the role of MNDA carer. Simonie had a heart attack afterwards and thinks that the stress of his illness brought it on. I wrote up the conversation and recorded all her tips.

 I emphasise to Sandie that she mustn't overstretch herself in caring for me.  Better to post me off to a nursing home before things get too tough. 

Comments

Post a Comment

Popular posts from this blog

Ceiling Hoist

Image
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.
Read more

Feeding Tube (PEG)

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
Read more

Floppy Head

Image
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
Read more