After July’s heat-wave, August was much more comfortable although temperatures did once again climb into the 30s. That brought back the problem of sweaty arms not sliding easily up and down the wheelchair armrests, making it difficult for me to move the computer mouse.
The rain we had this month was insufficient to prevent the introduction of water restrictions across much of the country, including parts of Wales, normally one of our wettest regions. Most of England is now officially in drought, but the impact in the UK, has been less severe than elsewhere in Europe. There was a fascinating BBC article (see https://www.bbc.co.uk/news/world-europe-62619397) about features revealed by exceptionally low water levels. These included WW2 ships, sunk in the Danube, still loaded with explosives. More sinister, though, are “hunger stones” at the waterline of rivers during previous droughts, warning that when the stones are above water, hardship lies ahead. One such stone in the river Elbe was inscribed in 1616 with the words “if you see me, cry”.
I did think the recent extreme weather might change the Environment Agency’s thinking on reservoirs. None has been built since water privatisation, 33 years ago, despite a UK population increase of 10 million people. Disappointingly, their recent statements still suggest they believe existing resources can be stretched further; the miracle of loaves and fishes comes to mind.
Previous blogs have mentioned sports stars living with MND (e.g. former British Lion, Doddie Weir) raising money for MND research/support. This month, 34-year-old Gloucester rugby player, Ed Slater, diagnosed in July, completed a 350-mile cycle ride to raise money to cover his treatment costs and support his family (see https://www.bbc.co.uk/sport/rugby-union/62494000). For me, being diagnosed with MND at 66 was tough; the same news aged just 34 must be devastating.
When Covid lock-down started, one of the first things to be cancelled was 6-monthly dental checkups. Even after relaxation of restrictions, I was reluctant to restart them. A simple toffee, though, changed my mind, deftly removing one of my crowns. Our dental surgery is about ½ a mile away, easily reachable by wheelchair, or so I thought! Since coming out of hospital in April, I haven’t been outside the house or garden so ½ a mile was quite a long trip. I was shocked to find that I needed a rest every 100m or so, even though all I was doing was operating the wheelchair’s joystick. The whole experience was quite exhausting but at least I have my crown back!
My new reclining shower/commode wheelchair still hasn’t arrived. The NHS’ supplier insisted they had not had access to measure our toilet (nonsense!), but the same rep turned up early this month to re-measure. Asked by our OT if the replacement could be hurried along, she said she had a very busy day ahead and was about to go on holiday, but she would do what she could. I’m still waiting!
I was surprised this month by a couple of perceptions other people had about MND. One of our visitors thought I had no feeling in my legs. MND affects the nerves which control muscle movement, not the sensory nervous system. I can feel as much as ever in my legs (and everywhere else), including pain and, very frustratingly, itching. As my arm movement has diminished, so has my ability to scratch various parts of my anatomy. I recently asked the community neurology nurse if there was any medication that prevented itching. She looked surprised and admitted it was not a problem she had ever thought about before! Ironically, one of the verbal commands used with my Dragon voice-to-text software, which deletes the last thing I said, is “Scratch That”!!