IPH Health 23rd May 2018
My motor neurone disease continues to dominate each day, as it will now the (perhaps quite short) remainder of my life.
However, I have identified four other problems or annoyances that may or may not be related to the MND. That is, some of them may be partly provoked by side effects of how MND is changing the way I live daily life. At least one may be causally related in some way as yet not identified by medical science, although how or why would be (by definition) unclear.
- Almost total loss of my senses of smell and taste
- Only ever getting very poor sleep at night
- A continual runny nose and tickly cough that has now persisted for two months
- Widespread itching for no apparent reason, across my back and on other areas of my skin
Almost total loss of my senses of smell and taste
Origins: I noticed this effect as long as two years ago (I think, if not three), and by the end of 2016 when I had a cold for a couple of weeks I thought it might be an effect of that. However, the cold went completely by spring and yet I still found I was not tasting food as I had done before. I told a friend and she wondered whether I might have zinc deficiency. Without researching the point at that time, I bought a bottle of Tesco vitamin C plus zinc and took the recommended one a day for a long time with no effect on my olfactory senses. So it predates the main onset of MND in September 2017.
- I cannot smell scents like perfumes (Eau de Cologne, after-shave ...), food flavourings such as vanilla or almond essence, or bad smells such as clothes that need washing.
- I cannot taste much in food, even if I add what would normally be a great amount of flavourings such as vanilla or almond essence;
- I cannot taste anything much gingery in bought ginger cake, or any of the sweetness in dollops of sugar icing on the top of bought iced cakes like the little ones (called muffins) from shops.
Causes: It was unlikely to be related to any dietary zinc deficiency, because as Wikipedia says, that has many other possible effects. Yet it would seem to be unrelated to MND unless sense nerves are affected as well as motor nerves, which would be a major fact for the science of it.
So the cause of this is a mystery. It is very upsetting because it removes most of the pleasure to be got from any food and drink. However, although I have not gone tasting nasty things looking for trouble, a few experiences of sharpness suggest that I would still loathe the things I have loathed for 50 or 60 years: tomato, vinegar (so ketchup), beer, mayonnaise, etc.
Only ever getting very poor sleep at night
Experience: For the last few nights I have gone to bed and settled as well as I can on the hospital bed I now use, and then lain awake for an hour or three without any sign of starting to sleep a bit. Or did I doze for a few minutes? I felt no sign of it. On Tuesday night 22nd May, to be able to be up in good time to go to my surgery appointment, I went to bed at 21:45. I had my breathing mask on and the light out before 22:00. However I was still awake at 01:00. I spent this time in a continual struggle to find any position in which I was comfortable for more than a few minutes. I woke at 05:30 and suspect that I had slept for scarcely more than 4 hours. I could not get to sleep again, as I struggled again until 07:30 when the little alarm clock that I had set beeped.
Causes: The respirator machine makes relaxing breathing a struggle; and that is needed because of what MND does to destroy muscles that operate lung function (breathing). Also the MND makes arms and legs weak so that they ache with tiredness just from ordinary movements — even just pulling the duvet into position to get warm, and arranging clothes that one is wearing in bed to sleep in to smooth out wrinkles. This aching is continual.
A continual runny nose and tickly cough that has now persisted for two months
This necessitates continual drying of breathing routes with paper tissues, and soothing of tickly cough with Jakemans menthol sweets. The last time I shopped (with my brother taking me there), I bought 15 bags of Jakemans — 5 of each of their three flavours.
I admit that you might ask whether all those menthol sweets affect my senses of smell and taste. However, I had lost those senses long before I had to start sucking Jakemans to prevent me having to cough slightly but almost continually after the start, on 24th March. (It began in the small hours of Saturday morning after I had been at Frimley Park Hospital on both Wednesday 21st, for CT scan, and Thursday 22nd, for the second EMG for detailed MND diagnosis.)
Widespread itching for no apparent reason, across my back and on other areas of my skin
Other than on my back, I get random itching at places round my waist, or on one arm or the other, at odd moments during the day and night. Does everybody get this? Maybe. The problem for an MND sufferer is that weak arms, hands, fingers can make it nearly impossible to scratch to relieve it. For a long time I have used a long smooth-edged carving knife to scratch my back, simply because one cannot reach the area with fingers. Or I use a 40cm strip of hard wood. But my weak hands find holding these a problem; and they struggle even to scratch (say) my tummy just at my waist band.