This is a short one. The illness is progressing, in the sense that it’s even more difficult now to eat, drink, swallow and speak. When the throat finally stops working, no food or liquid will go down. It won’t be fun. Three options: a dash to Dignitas; or a hospice here in London for the same reason but taking much longer; or syringing food, liquid and general nutrition through a tube directly into the stomach – and I don’t have the tube. I’ve mentioned it before: it’s called a PEG – a percutaneous endoscopic gastrostomy tube.
A week ago however, very reluctantly, I told the National Hospital that I’m prepared to have the operation for the tube to be fitted. I’ve delayed and delayed, really agonising over it and wondering whether it’s worth it. Day-to-day life is difficult already and the voice is disappearing, so to add another complexity – managing the mechanism – could just add a greater burden. Anyway, we’re going ahead. 3 or 4 days in hospital sometime in the next 4 – 6 weeks. Understandably the hospitals have other priorities at the moment.
But there’s something else. With the mouth and throat muscles mostly numb and paralysed it was disturbing to find that the toes were starting to lose all feeling – numb, less control, ‘frozen’, like permanent ‘pins and needles’. And it has spread, across the top of the feet and up to the ankles and slightly beyond. Walking flat-footed, slapping the feet down. Not exactly Charlie Chaplin but you get the idea.
In a previous talk with the consultant she’d said that MND generally moves contiguously from one group of muscles to the next group nearby, but there are exceptions: it can suddenly start somewhere else in the body. As a result here I was again, singled out, one of the minority where the illness jumps to muscles much further away, in fact as far as it could possibly go – from the throat to the toes. Was this a pincer movement? Muscle paralysis moving downwards from the throat, and upward from the toes? Not pleasant.
Until yesterday, that is. A 45 minute zoom session with the specialist. She went through all the advantages of having the PEG. Can’t say I’m totally convinced but I’ll give it a try. Then she moved onto the feet and the spreading numbness.
It’s not MND/ALS, she said. It’s Common Peroneal Nerve Palsy, a version of what we used to call “Housemaid’s Knee”. And it might have been caused by my 5 months of lockdown and shielding.
Seems it’s perfectly possible that I’ve been sitting with legs crossed for long periods. And I think I have. That would have created extra pressure on the nerves around the knees which then affected the toes and feet. She said that in most cases it goes away when the individual takes more exercise and doesn’t sit cross-legged.
Well, that’s good news and very welcome. Next Thursday a physiotherapist will be visiting so I’ll get him on the case also. And I guess that’s an official sanction to get out and walk, walk, walk. And no more leg-crossing. How interesting.
That’s all for today. From this Housemaid, good cheer!