Living with MND

As many of you know, my mother is dying from MND. Many would use the word ‘suffering’ but I am not sure that that quite encapsulates the process. There is but one end to this. It relentlessly eats away. This is particularly true for the form that my Mother has, Progressive Bulbar Palsy, where time frames are particularly short and each day some slight bodily function seems to be lost never to be regained. In the coming days she is being operated on to have a feeding tube installed; another step on the path. 

There is growing awareness of MND; there’s the MND Association’s campaign using ‘Patrick The Incurable Optimist’ (a good awareness raising technique though I worry about him being subject to media manipulation but thus far it has been excellently managed), the blogs of the likes of Prof D. Mark Cato (an excellent chronicler of how this disease eats away at the body and life from an upper middle class perspective) and blog entries by those who are not directly affected by the disease but moved by it (e.g. ‘Thoroughly Good’). This makes it a little easier and less necessary to explain the ins and outs of the disease, as these people do it far better than I ever could.

In simple terms, the disease stops the functioning of the nerves which tell the muscles what to do. In my mother’s case this is happening in the mouth, throat and respiratory system areas. Eating, drinking and even breathing are becoming hard work. Gradually now she is losing mobility in her limbs – the left foot has a permanent limp and the left hand is less responsive. We suspect the right is going the same way though this is less obvious. She is gradually losing weight and find even the simplest things are tiring and take far longer than they ever used to.

It was hard on holiday witnessing the affects knowing the woman as she was but also inspiring watching my mother fight it day by day:

• The woman who helped me learn how to swim now needs help swimming but is determined to join us in the pool.
• The woman who washed me in the bath as a child, resists us supporting her in the bath, even though occasionally it makes life easier. 
• The woman who used to cook all the family’s meal, only allows Bro and I to help occasionally; we, as her children, are still seen as the ones who need caring for. 
• The woman who would have walked the walls of Carcassonne without thinking now has to do with a tour on a French 'town train' but wants to see the world around her. 
• The woman who seemed to drink a coffee every 20 minutes now takes 20 minutes to manage even half a cup but wants to spend the time chatting with her friends with her drink.  
• The woman who has proof-read nearly every single one of my essays and dissertations, still helps me out with a word for an essay and to shape my thinking on issues. 

You see, though the body works slower, the brain has no problem.  The kindness of the people that we tell and their understanding is astonishing.  Yes, you find the odd company (Barclaycard, Our Burglar Alarm Firm etc.) who badly manage things (and at times ignoring any anti-discrimination legislation) but on the whole one has been impressed with the NHS, with the kindness of colleagues and the thoughtfulness of strangers.  So in another way, we are not 'suffering' this disease but learning to live with it.