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Monday, 4 January 2016

No. 272. 'The media and MND.'

Just my own opinions.

There is a controversial story line on the TV soap HollyOaks at the moment, a particularly obnoxious and evil character has MND, as far as I am aware the character's father had it so he knows what is to come and long story short, he is plotting his own demise. I won't get into the controversial nature of mixing a nasty person with MND and whether the right awareness has been raised as I don't actually watch it. I do know that the actor playing the part, Jeremy Sheffield has gone out of his way on Twitter to raise MND awareness and funds for the MNDa.

I am more interested in how a MND death is dealt with in the media in general. I first found out about MND when I was in my teens when David Niven was diagnosed with it. I remember thinking what a horrifying disease it was and how it was really scary. Over the years though the only time I heard about MND in the media was when someone wanted to go the assisted suicide route to end their life. 

I am fully supportive of assisted suicide for those who are terminally ill and of sound mind. Only they know when their life has become too unbearable, but not everyone with MND wants to go that route. 

Chris had the option of having a trachaeostomy to help his breathing and prolong his life. He chose not to go that route after being told it would involve a 3 month stay in a hospital 100 miles from home, plus he personally did not wish to be kept alive in a failing body. He could not get his head around the modern technology that was available to him and his world was becoming smaller and smaller. He was a hands on cattle farmer, he loved the countryside and being outside, he mostly only ever came in to eat and sleep. This MND world he was thrust into was totally alien to him. Many people live very successfully with a tracheostomy, it was just not for Chris. 

However....Chris did not want to die... He wanted to live and he literally fought till his last breath to stay alive. He still felt he had everything to live for, his family especially. We did discuss it and he would not have gone the assisted death route. Having a AND (a natural death order) put in place is not the same thing, he just did not want to be resuscitated come the end.

Casualty kind of dealt with both sides of this coin on two separate story lines. It would be good if MND was ever dealt with again on a TV programme, that it dealt not just with the awful truth of what MND is, but to also show the courage and fight of those who have it and what the whole family goes through and loses and the actual problems and logistics of having a disease like this.

Any kind of MND awareness is good and the past 18 months since the IBC it has mutilpied beyond belief. It would just be good if it could be dealt with in the media in a truly honest way.

All those who have/had MND, including my darling boy, are some of the courageous and bravest people I know.

A programme like HollyOaks is just a soap, they aim to be controversial, I just hope their way of dealing with MND brings more positives than negatives.