Some friends have contacted me in the last two days, concerned that I might not be coping especially as I live alone. To reassure everyone, some notes:
It’s 3 minutes’ walk to my excellent GP, who will visit me if needed. 2 minutes’ walk to a pharmacist I’ve known for more than 20 years and who delivers medication to the door of my flat. Waitrose is two minutes’ walk away. For many years I was chairman of the local area’s residents association so am well-known and can call on a number of neighbours to help, especially the couple who live beneath me whom I’ve known for almost 30 years. I have a bracelet with a red button which when pressed will summon the emergency services, who have special access to keys. Another bracelet which tells anyone that I have MND and that “I may be at risk with oxygen”. Therapists ZOOM or visit masked. Documents are held in a known place: Powers of Attorney, Advanced Direction to Doctors and others. Two wall phones will open the front door of the house and the door to my own flat, remotely.
I can only take liquids. The NHS provides full-nutrition bottles of liquids in neutral and various flavours. I should drink at least six a day, and there are probably 150 of them under the bed. A friend gave me a food mixer of such power that it turns anything into liquid – shepherd’s pies, lamb hotpots, you name it. A friend does most shopping for me. A friend gave me weighing scales, replacing my 30-year-old ones. A friend takes care of the roof garden. I’m well looked after.
So that’s the externals. Regarding the body, the lungs do well on the level – I can plod round the parks. Stairs are becoming tiring but I recover after a minute or two. The three S’s are still the main physical problems: Speaking, Swallowing and Saliva. Speaking is almost at an end, so the future audible voice will probably be tapped out and articulated by the phone or the iPad. Swallowing is almost at an end and is more and more precarious – hence the real need for a PEG feeding tube – but I’m mostly coping with the liquids so far. The saliva difficulty is because the tongue is almost completely paralysed and cannot direct the saliva to the throat, and the throat doesn’t automatically swallow, so it builds up in the mouth. Because the lips are mostly paralysed and numb, out it comes, down the chin and onwards – very irritating especially because I can’t feel it. There have been some coughing fits, normally triggered by something in a liquid meal, or liquid or saliva touching or in the windpipe, and occasionally I’ve been close to pushing the wrist button, but so far I’ve managed to clear it. Weight is down from 90 to 75 kilos but it seems to be stabilising there – and that’s a bit heavier than when I was rowing, aged 20. I dislike taking sleeping tablets but these days I often do take them, and there’s no doubt that they help.
Until recently friends and neighbours could visit and I could visit them. Now it’s much more restricted so only one or two do come in, but I’m lucky: temperamentally I don’t get lonely and I’ve not got depressed.
So life is not at all easy and the future isn’t that rosy, but right now there’s a lot in place to help me, and if the PEG operation with a general anaesthetic does go ahead, and if it proves successful in relieving me of the swallowing problem, then there could be a real improvement in daily living. It might also liberate me from the saliva build-up which is currently triggered, Pavlov-style, by the anticipation of eating and drinking.
This will not slow down the movement of the illness. The Enemy Within continues to flex its muscles by paralysing mine, but I’m hoping that energy levels, socialising, and perhaps even travel, will return once the mouth and throat are relieved of the constant battles of swallowing and saliva control. But then there’s the virus of course. Unlike most people, I’d almost forgotten that!
Anyway, be reassured. Thank you.