The biggest national event in May was, of course, the Coronation weekend, which included an extra bank holiday Monday. That Monday, coincidentally, was our son-in-law, Tudor’s, birthday so he and Fiona organised a BBQ at our house for family and friends. In what was otherwise a wet weekend, that day was glorious. I had my first visit of the year to our garden and thoroughly enjoyed the sunshine, the company, and watching the children having fun on the trampoline and swings.
The saga of Wheelchair Services’ fitting of head-movement controls on my wheelchair continued this month. They rang to ask if they could come at 10 o’clock next morning, a Friday, to complete the installation. We did point out that the GP was coming at 12.00 but they assured me that it wouldn’t take long. Famous last words! It took much longer than expected. I barely had time for a few trial manoeuvres before the GP arrived. She seemed unperturbed but the two technicians quickly finished and left. It was only after the GP left, too, that I discovered that the manual override, which worked fine during the trials, didn’t work any longer! Wheelchair Services were uncontactable, and they don’t work weekends. We eventually managed to restore manual control but only by disabling the new head controls! And that is still the situation. Not impressive.
In my last blog I wrote about the attempt to improve my head position with a special armchair, but the demo chair wouldn’t go through our doorways. The rep went away to think about it but I doubted anything would come of it. How wrong I was! With my OT’s urging, the supplier combined parts from two of their standard chairs to make a ‘special’ for me. It’s brilliant! Really comfortable and easy to move around. The head support isn’t quite as good as I’d like but Lesley, my OT, might be able to suggest something when she next visits.
As some of you already know, I had a visit this month by Mitch Clark. Mitch was Captain of Haywards Heath Golf Club in 2018 when my MND was diagnosed. Mitch had lost his brother to MND the previous year so had nominated MNDA as the Club’s sponsored charity for that year. He asked me to write a regular piece on ‘Living with MND’ for his Captain’s newsletter, which evolved into this monthly blog. Mitch now has a radio show on Sunday evenings at Ridge Radio. On 28 May, to mark the 6th anniversary of his brother’s death, Mitch hosted a tribute show to his brother and all people living with MND. He asked me to choose 3 songs that have a special meaning for me, which he then featured in his show. For those who missed it, you can download the whole 3-hour show at: https://wetransfer.com/downloads/20f40a5af9a6510826dac298555761a320230531183552/c21365331d53633fec2a184613231fcb20230531183552/aa7c8b (254MB; link expires 28 June).
In my last blog I mentioned my angst about Nottingham Forest’s battle to avoid relegation from English Premier League football. I am delighted and relieved that they succeeded. My second favourite team, Newcastle United, unexpectedly held on to a top-4 place so will play in the European Champions League next season. A good all-round end to the season. Commiserations to those whose teams didn’t achieve survival/promotion/European qualifications etc. I feel your pain!
I was weighed again this month, clocking up 109.7 kg. That’s a reduction of 2kg. It’s probably just a variation in water retention but it has provided me with the ideal excuse to have a few pre-dinner olives or a top-up of wine by claiming that I am withering away!