This year is drawing to a close, and Christmas is fast approaching. Seasonal activities such as Christmas parties are in full swing and I was delighted to be able to attend Haywards Heath Golf Club’s Christmas bridge party on Monday. Bridge at HHGC is always well supported but the Christmas event, expertly organised by Bob Hall, attracted 60 participants. It was good to see so many familiar and friendly faces, and to receive so many messages of support, but I was saddened to hear that the son of one of the ladies there has been diagnosed with MND at the age of just 50. He has already had to stop working. Life isn’t fair, but that doesn’t take away the sense of injustice when someone is afflicted so relatively young.
Our transfer up to Nottingham has made some progress. We are now registered with a GP there, and following my first meeting with the consultant Neurologist at Nottingham’s Queens Medical Centre (QMC), I had a follow-up breathing test that involved me wearing a recording device overnight, strapped to my chest, and attached by wires to two probes; one fitted over a finger to measure blood oxygen, and the other under my nose to detect breathing. Amazingly, I did manage to sleep wearing all this equipment, and it was all still in place when I had to get up in the middle of the night, but the breathing probe had come adrift by morning so I have yet to find out whether the test provided meaningful information.
My last blog was premature in saying that I’d made my final hospital visit to Brighton for the new drug trial. The hospital in Sheffield, while still prepared to take me under their wing for the clinical trials, can’t (for some unknown reason) cope with me in January. The scheduled hospital visit will have to be back to Brighton. We hadn’t planned to be in Sussex then so we’ve had to amend our schedule. Perhaps it is fortunate that we haven’t yet sold our house in Cuckfield!
The fear that house prices will fall post Brexit has flattened the market in Sussex so we are, for the moment, stuck with two houses, and continue to shuttle up and down the A1, spending time in each. Unfortunately, the stairs in our Cuckfield house are becoming more and more of a challenge for me. Each ascent leaves me in need of a 10-minute rest so something has to change. If we can’t sell the house soon, we’ll have to rent it out until houses start selling again.
As my level of disability worsens, I find myself having to ask Doreen to do things I have always previously done. Managing car tyre pressures is one example. Yesterday, Doreen received instruction on how to use the air dispenser at our local service station. Although she did very well, it was not without incident; but then we’ve all managed to drop the dust cap at some time and seen it roll under the car; or cross-threaded it when we have finally recovered it. The car behind, patiently waiting for us to finish probably added to Doreen’s anxiety.
Coincidentally, our daughter, Fiona, was faced with a similar challenge recently. Her husband, Tudor, developed stomach pains and was rushed off to the QMC for an appendectomy. While he was recovering in hospital, he’d asked Fiona to pump up one of the tyres on their car which had a very slow leak. She’d never done this before so I asked her what pressure she intended to pump it to. “I don’t know”, she replied. “Tudor said to put in 30 pence worth.” I thought about this for a minute or so before asking if he’d really said 30p? Or was it 30 psi (pounds per square inch)? Some things you just don’t learn from degrees in Law and English Literature!!