July was supposed to be ‘high summer’ but, as we know, it turned out to be a bit of a damp and cool disappointment most of the time. However, we had some lovely days and we made most of them. At long last we were able to enjoy our long-awaited Christmas lunch with nearly all the family – just two absentees due our elder grandson being in isolation because of COVID cases in his school bubble. The following day the weather was brilliant as we celebrated Sue’s 65th birthday at a wonderful ‘secret’ party arranged by our dear local friends. On another occasion Sue and I visited Ascott House in Buckinghamshire on a hot and sunny day (with my wheelchair) and, with our immediate family, we enjoyed a wonderful weekend away at Pendley Manor near Tring. Not very far from home, but it had all the facilities we needed for a good break.
My saliva and mucus issues were resolved to a degree and are now more tolerable problems. I have been taking Carbocisteine for mucus congestion for several months, but during a routine consultation with a neurology consultant at the National Hospital, it became clear that my hydration hasn’t been sufficient. In addition to teas and coffees it seems I should have been drinking up to two litres of water a day (and alcoholic drinks don’t count). Water is quite difficult to drink when you have MND so, within a couple of days, I had been supplied with a pump to deliver water via my PEG feeding tube while I’m sitting in a chair watching TV. This is a much easier was of ‘drinking’ and later the pump can be used to deliver food in the same way.
Excess saliva has been treated by taking a small daily dose of Amitriptyline. Primarily this is an antidepressant, but a known side effect is a dry mouth – a good example of a drug being repurposed to do a different job to the one originally intended. The antidepressant qualities are probably quite handy too.
Sadly, my BiPap ventilator remains an object sitting by the side of the bed gathering dust rather than a useful piece of medical equipment. The face mask is unbearably uncomfortable, it leaks around my short beard and moustache, and it breathes too fast for me in a very disturbing way! The neurology consultant said that these issues would be addressed at an outpatients’ clinic, but this is yet to happen.
The major change in function I experienced in July was the continuing rapid decline in my arms and hands. When MND started my dominant right hand was fine as the left declined. They are now both pretty useless and this makes everything so much more difficult. Typing is now a two finger job, I can no longer safely lift a mug of coffee and eating is a potentially undignified process. One thing that has helped though is the delivery of my arm support contraption. It’s an ingenious but simple piece of equipment and makes eating much easier because it supports my arm and then, when I push down with my elbow (still achievable) it raises my hand up towards my mouth. Every person living with MND should have one, however I know that’s not the case and I was fortunate to be referred to the Oxford specialist disability service.