A period of glorious, sunny weather, combined with relaxation of Covid-19 lockdown rules, allowed us to entertain family members in our garden this month. It was lovely to see them, unconfined by a Zoom window on our iPad. Also this month, live golf and football has returned to our TV screens. I even watched a couple of Brighton’s televised games!
And after nearly 3 months of Covid-19 shielding, I had my first venture beyond our front door this month. I had to go to Nottingham’s City Hospital Mobility Centre for fitting and collection of my new electric wheelchair. This one has a lifting seat to help me reach a standing position unaided. Our daughter, Fiona, had ordered some face masks for our adventure, which only arrived the day before. If they hadn’t turned up, she had a ‘Plan B’, to let us have some spares of hers, but one of them did have dinosaurs on it. I’m not sure what they’d have made of that at the hospital!
We have been to the Mobility Centre a couple of times before, when it was bustling with activity. This time, though, it was like a ghost town. We saw only one other patient in the 15 minutes before our appointment, and none at all in the 10 minutes afterwards, waiting for our taxi. The two technicians who dealt with us were kitted out in full PPE, including face masks and visors. The one, who came to fetch us from the waiting area asked if we recognised him with his face covered. I said I did, but it might only have been because I recognised his name from our previous visits.
The new wheelchair is identical to the old apart from the additional feature of a lifting seat. I really only need a few extra inches in seat height to be able to stand up but the chair can go much higher than that. When fully elevated I feel a bit like a tennis umpire! It is very slow to elevate, though. Our son-in-law, Tudor, quipped that it’s the most ineffective ejector seat in the World!
I had an interesting contact from Erica, the local NHS MND Co-ordinator. She had been asked by The National Institute for Health and Care Excellence (NICE) to propose patient representatives for a panel that will be examining MND care and treatment in the UK, and thought of me. I asked her to submit my name for consideration but have heard nothing more as yet.
Physically, my deterioration continues slowly but surely. My hand function is a little worse, now, and my wrists are notably weaker. Lifting the kettle to make my early morning tea has become a two-handed operation. Even manipulation of quite light objects such as my electric toothbrush, or beard trimmer, requires both hands. My walking has also deteriorated somewhat.
Getting to my feet continues to become more difficult so the new wheelchair arrived none too early. And despite recently raising the toilet seat to its maximum height, I’m already struggling to get up again, especially when tired. The same applies to the wheeled chair I use for my morning wash/ shower. Getting up from it without help is now almost impossible. That is only a minor restriction, however, as I need help anyway getting dressed, which always follows my morning ablutions.
On the subject of dressing, I now rely almost entirely on Doreen to dress me. That does have its drawbacks. I know my waistline is less well defined than it once was, but Doreen does seem to believe it to be located somewhere near my armpits. Her vigorous upward heaving of my y-fronts has, on a couple of occasions, resulted in certain parts of my male anatomy spilling out sideways, much to my embarrassment and Doreen’s amusement. It does rather negate the whole point of wearing underpants!