I help him most of the time now to do up his trousers, belt etc and while I am trying to do it Chris's feet won't stop moving, I am saying keep still, but he can't, if he does he will fall, so he does the 'custard dance.' Yes he could and sometimes does sit down, while I help him with these things, but I am just trying to explain what it is like when your core muscles start to weaken because of the motor neurones dying off. He doesn't have the core strength to support his upper body weight so he is more inclined to lose his balance and fall, momentum of movement helps him maintain his balance. I hope that make sense.
He has fallen over a couple of times in the past week too, once at the fashion show, but that is also to do with him being unable to lift his feet high enough sometimes and he just trips up. Chris has ALS which is the type of MND that affects the whole body. His motor neurones are being attacked on all fronts. Whatever type of MND someone has, most all end up the same eventually, being unable to move, talk, swallow or breathe without help. The palliative care nurse came the other day and asked Chris in a round about way, how he feels about reaching that stage one day and Chris just said 'I want to live, I love life'. She seemed a teeny bit surprised at that statement and said people often changed their mind many times about how they will feel, but she doesn't know my husband and I know he wants to fight this demon disease literally until his last breath. Everyone is different though and there is no right and wrong way how to feel about any of this, this is just how Chris feels ...for now.
A neighbour, who owns a classic Jaguar, phoned in the morning and asked Chris if he would like to go out for a drive with him later in the day. Chris said yes and I think he quite enjoyed it. It was good for him to do something different.
I think some people still wonder why I write this blog, why I am so candid and open, apart from my own personal reasons, I just want people to know exactly what MND does to a person, how it changes their lives for ever. How can we expect people to be willing to donate to help find a cure one day and help those living with this disease if we don't talk about it. Chris is not ashamed to have MND, bloody angry yes, but not ashamed. We aren't going to hide away and be embarrassed by it. We have to stand up to this God damn awful disease and we have to shout about it out loud. It's all about spreading MND awareness and this is just our way of doing it.
