Hello everybody,
We still have a Winter Wonderland here. I am rather pleased to report that someone must have been out with a metaphorical pooper-scooper overnight as some of the problems described yesterday have eased somewhat. Most importantly, my swallow seems to have recovered to almost its previous strength although I am now probably super cautious about what I eat and drink. However when sat watching an episode of Green Wing with Louise I had a really intense craving for crisps, not very helpful I know!

Whilst last night was far from settled, I had a couple of extra hours in bed this morning which has left me feeling less fatigued. I’m not sure if the extra sleep is a result of being so tired or the fact that we had to crack into our rescue drug, a form of morphine. This was required to treat a recurring and unusual symptom. Generally what happens is that throughout my extremities I can feel a tremble which proceeds through the length of my arms and legs and up my torso. The strange thing is that this tremble is not manifested physically but must simply be a memory of movement. This is then physically manifested as a powerful and uncontrollable shudder through my neck and jaw which clenches tightly shut. I can only liken it to when you bend down and try to lift something very heavy, like a car! This can and often does last for a number of hours making sleep impossible, until it either subsides on its own or I succumb to the sedatives, as was the case last night.

I thought it might be worth telling you about some of the more unusual symptoms I have experienced.  I am sure that these are not unique to motor neurone disease and are suffered by many paralysed people.  Often times as I sit in my chair, I can feel my feet swinging back and forth below me when clearly they are firmly planted in the foot rest.  On one occasion, I was sat in my chair with the computer on a table cantilevered over me.  Louise was operating the laptop using the little tablet to control the mouse and I could feel in the tip of my index finger every time she moved her’s; every motion and even when her finger ran into the raised edges of the tablet.

One of the strangest symptoms to have occurred thus far is the inability to understand the relationship of one limb to another. When I am covered up it is often impossible for me to determine where one hand is in relation to the other, for example. My fingers can feel painfully curled up when in fact they are perfectly laid upon my thighs. My legs can be crossed as far as I’m concerned but my feet will be a foot and a half apart in reality. While this is quite entertaining when such symptoms initially occurr, you will appreciate how infuriating it is after some time.

I hope the above is of interest to you, particularly as they are less well-known than the condition itself. Rather than overload you now, I will tell you about the joys of nerve pain another time.

On another subject, Oscar is currently enjoying his third outing in the snow with his mum and Granny Rosie. They have gone for a bit of a walk so I’ll give you a full report of how he got on tomorrow. I can however tell you that his behaviour has progressed into that of a stroppy teenager!

Also tomorrow I hope to be in a position to ask your help in raising awareness further, I just need to clear it with a few people first. Watch this space.
All my love,
Neil (slightly more awake) x

Neil’s exhaustion now seemed to take a day of recovery in bed, about every second or third day. Some days when he woke up I could just tell that he would ask me to cancel the Palliative Care Team as he would not be moving from the bed. It seemed to suddenly be part of our routine, just like everything else had crept in, we would look back and some things had become the norm, without us even realising.

The jaw clenching symptom he described here, made him very frustrated, partly because he felt as though it were psychosomatic, as if he was creating the symptom with his mind. I remember him trying to describe it to me and telling me that his jaw was clenched. He would ask me if I could see his neck muscle working the way he describes here, as if he were straining to lift a heavy weight, but there was no sign of it. I think the frustration was born out of the idea the disease was now messing with his mind and playing tricks with his senses, and yet again he wasn’t sure if it was another progression of the disease or a side effect from medication. – Louise (2013)