MND 1 Steve 0

Apart from my birthday, when I received the drawing of the boys I have managed to prevent an emotional meltdown for several months, which is quite a long period for me.


An aspect of MND that many people aren't aware of is something called emotional lability. It causes accentuated or inappropriate emotional responses. So it can make you smile or laugh at things which you shouldn't or break down into a sobbing mess over something sad or poignant. The smiling and laughing aspect is akin to getting the giggles. You know you that you shouldn't, but you just can't wipe the smirk of your face. The biggest issue of this for me is when dealing with the boys, as in situations where I am trying to discipline them, it is nearly impossible because I can't stop finding what they are doing, funny. Or if one of them hurts another by hitting them and causes them to cry, my inappropriate laughing sends completely the wrong message to the perpetrator, appearing to condone their actions, while upsetting the other one who is looking for some sympathy. It is this inability to show compassion in this situation which I hate and is potentially the more behaviorally damaging for the boys. Obviously I have tried to explain to them why it happens but it doesn't really help.

The flip side is a less common problem and generally confined to private scenarios in the presence of people who understand. Although there was one occasion around two years ago when I ended up crying uncontrollably in the middle of a Manic Street Preachers concert. They were singing A Design For Life, which apart from being one of my favourite songs and quite emotionally charged anyway, has additional emotional relevance as it was (along with the rest of that album) the soundtrack to early holidays in Wales which were spent walking through beautiful countryside and enjoying pub lunches. So hearing it just reminds me of what we have lost and will never do again, and combined with emotional instability the consequences are inevitable.

But today I had another lapse. I have hardly been out in 3 weeks, so with the outside temperature at a dizzy high of 6 degrees I had hoped to get out for a walk with Tracy and the dogs. I think I have mentioned the increased effort, both mentally and physically, required to get out now. This morning I had wrestled with whether I could manage the outdoor wheelchair and not just end up shivering and shaking with rigid legs and unable to move the joystick. Having convinced myself that I was going to do it, I got my carer to transfer me.


The first problem was a combination of the cold back room and the trepidation of the task, causing my legs to shake. This makes it impossible to push myself up into a sitting position from the the slouched position the hoist deposits me in. To make it harder still, the chiropodist visited last week to cut my toenails. And in order to maximise the time between visits, she cut them very short - far too short and exposed the nailbed. Consequently, anything touching the end of my big toe feels like needles being pushed underneath the nail. As well as preventing me pushing up in the chair it has made being hoisted painful and turning in bed has gone from being incredibly difficult to impossible.

Next, my peg feeding tube has become infected so any abdominal muscle contraction produces a spasm of pain.

The final straw was discovering that moving the joystick right or straight ahead wasn't possible and that I just couldn't muster any more determination to fight everything. Going out is meant to be enjoyable but I knew that today it had been about proving I could do it and defeating the barriers. But I couldn't, and it was that fact which pushed me over the edge. MND won today and I am a terrible loser. It better be ready for the re-match


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