Another month has gone by without me passing beyond the front door. Fortunately, though, we have regular visits from friends and family. We also had some entertainment watching our conservatory roof and windows being replaced. I’d planned to have the wooden frames painted this year but wood-rot was worse than anticipated so we opted for replacement. To our surprise, the three companies bidding for the job were all extremely busy. It seems that, during lockdown, many people have noticed the need for home improvements. Many also have surplus cash which would normally have been spent on holidays etc.
It was time, this month, for my quarterly MND clinic, once again to be a ‘virtual’ clinic. The last one was conducted by telephone but this one would use MS Teams (similar to Zoom). I hadn’t used Teams before so had to prepare by loading the software. Not a problem, I thought. Zoom works fine on our iPad, but attempts to load Teams on it all failed. So what to do next? My mobile phone also refused to load Teams but, fortunately, Doreen’s phone accepted it.
The clinic went well, despite the small screen. The QMC team were delighted to hear that my weight is stable, that I’m eating well, and still enjoying a glass (or two) of wine. My speech, too, remains unaffected. I described my continuing loss of mobility and hand function, and my ‘floppy’ wrists for which I have ‘splinted’ mitts, but don’t wear them much, as yet, as they limit my ability to grip the walking frame. Everything is a trade-off!
I also told them about my diminished breathing as I’m finding it difficult to sit up straight for very long, often relying on my elbows to maintain an upright posture. I hadn’t realised I was doing this until my elbows started to hurt. Standing upright is now difficult without the support of the walking frame. I wondered if this was as a result of spending so much time sitting in the wheelchair, weakening my back muscles, but I was told it is due to a loss of core body strength, characteristic of MND. Not good news. I might soon have to start using the ventilator more during the day.
Earlier this month, my sister, Kate, and husband, Dave, had a short holiday in Scotland, and very kindly brought back a haggis for us, something I really love eating. Doreen likes haggis too, but her first reaction in such situations is to put it in the freezer until she’s decided when we’ll eat it. Normally that’s fine, but our freezer, believe it or not, is the haggis equivalent of the Bermuda Triangle! Over the years, many a brave haggis has passed through its door, never to be seen again.
To save this lovely haggis from a similar fate, I persuaded Doreen we should eat it the following evening, accompanied by the traditional ‘neeps and tatties’ (turnip/swede and mashed potato in English). But next day, Doreen announced we were having sausages that evening, and asked if I wanted chips or mash with them.
“I thought we were having haggis” I replied.
“I don’t have any turnip nor the right potatoes for mash” she explained.
“But”, I said, “You’ve just offered me mashed potatoes with the sausages!!”
So we had sausages with chips that evening. But the haggis was, nevertheless, reprieved from the freezer and eaten the day after. Absolutely delicious!!
Finally, I’m pleased to announce the launch of my new MND Blog website. To see this and all previous blogs on line, go to https://davidsmndblog.co.uk/