April is very much a transitional month in the UK calendar. Only a month ago I was writing about the worst snowfall of the winter but, as I write, the sun is shining, and we are only 7 weeks away from Midsummer’s Day. In sport, we have had the first golf ‘major’ of the year (The US Masters), the domestic cricket season is well under way, while the football season is reaching a climax that is a growing source of angst, with my beloved Nottingham Forest mired in a tight relegation battle.
The month began with my quarterly online MND clinic. Unfortunately it coincided with the junior doctors’ strike so my consultant was absent, helping out on the wards, but the clinic was still just as useful as normal. I wasn’t berated for my rising weight; in fact they were quite delighted that I am still able to eat and drink almost normally. The main focus was on my failing neck muscles and my consequent drooping head. That led to a number of actions.
As a direct recommendation of the clinic, I bought an L-shaped pillow, something I’d never heard of before. While I’m in bed it acts like a book-end, stopping my head from flopping over to the left, where it always wants to be these days. Very effective. Somewhat less effective is my new neck collar. The soft sponge collar I was given when my head started drooping worked well and was reasonably comfortable but, as the problem worsened, it provided insufficient support to keep my head upright. I now have a new stiffer collar which is functionally better but at a significant cost in terms of discomfort and reduced mobility, making head control of the computer more difficult. I am trying to use it for a time every day, hoping I’ll get used to it but I’m not sure I ever will.
In another attempt to improve my head position, Lesley, my OT, suggested a special armchair, incorporating head support, and on wheels so I can be moved from room to room. She came here with the supplier’s rep, who brought along a demo chair. It was indeed very comfortable but, sadly, with me in it, it wouldn’t go through our internal doorways. This puzzled me: How had the rep managed to get it into the bedroom? The answer was folding arms which made the chair narrower for storage and transportation, but they couldn’t be folded with me in the chair, nor could they be easily removed. The rep took some measurements and went away to think about it. We’ve heard nothing more from him so I suspect the problem is intractable. A pity.
Towards the end of the month, Cuckfield Tennis Club, where I was a member for many years, held an event in aid of MNDA. It originated last year when CLTC was celebrating its 100th anniversary. The All England Lawn Tennis Club (aka Wimbledon) invited Cuckfield LTC to send 6 representatives to play other similar clubs on the hallowed turf of Wimbledon. There, they met Dan Bloxham, the Head Coach at the AELTC, who agreed to come to Cuckfield where, watched by CLTC members, he coached the ladies team for an hour. Afterwards, Dan entertained Club members in the bar with stories from “behind the scenes” at Wimbledon. The event raised over £400 for MNDA.
Lavern, one of my lovely team of carers, returned this month from a visit to Jamaica. She very kindly brought me a 200ml bottle of strong Jamaican rum (63% alcohol!), warning me not to drink it neat. That evening, I asked Doreen to make me a Rum & Coke as a pre-dinner drink. Finding some ice proved a bit of a problem so my drink arrived just minutes before dinner. It tasted beautiful but very strong, and with so much of it left, I decided to do without my usual glass of wine. That night, I slept well. Next morning, I spotted the rum bottle and realised how much of it Doreen had put in my previous evening’s drink. It’s a good job I didn’t have wine too or I might have slept for a week!!