In New York

In New York

Wednesday, 21 January 2015

Dying Without a Voice

Dying Without a Voice

On the 27th January, the All-Party Parliamentary Group (APPG) on motor neurone disease (MND) will launch a new report into access to communication equipment for people living with MND. What the MND Association say:

“We expect the report to show the shocking truth: people with MND are dying without a voice.”

What they are asking us to do:

“Please join our online flash mob and help us make a lot of noise about this issue. This online flash mob will help us raise awareness of MND by harnessing the power of Twitter and Facebook, sharing the same message with lots of people, all at once.The more people who sign up, the louder our MND voice will be!”

I signed up today. This campaign has got me thinking. It’s not just about communication at home and in social situations. So many MND patients in hospital are being failed by the NHS, because when they are admitted, they don’t have access to the technology which will allow their thoughts, wishes and feelings to be communicated to staff. Think of when you are in hospital, perhaps unable to leave the bed unaided, all you have to do is press the bell for a nurse to come and you can tell him/her what the problem is, what help you need, how distressed you are feeling, that you need more pain relief or that you need to go to the toilet. The MND patient without a voice must rely on his/her carers for this and even then, they may get it wrong, or they may not be there. 

Please sign up and add your voice.

Roch's Voice

It’s got me thinking, too, about Roch’s voice. He can still speak after five years with MND. He may die and still have his voice at the end, but there are no guarantees. We both fear a day when he can no longer speak.  I have lost count of the number of family carers who have told me that the worst loss for them was when their relative lost the power of speech. One woman, whose partner is living with MND told me,

“We have to argue via email!” Another, five years after the loss of her husband to MND, had tears in her eyes when she said,

 “It was dreadful when I knew I would never hear his voice again.”

When I was pregnant, Roch got into the habit of reading aloud to me at bedtime. In the early hours of labour with both Kate and Tom, he read to me to distract me. We continued this reading habit for years and nothing delighted the children more than when Daddy read to them.  Sometimes his chosen reading material would be the book he was currently reading himself, which more often than not would send them off to sleep in minutes! However, he did read ‘The Lord of The Rings’ to Kate when she was nine, thus happily fostering a life-long passion for Tolkien. Tom, I remember was the lucky auditor of ‘Ender’s Game’ by Orson Scott Card (which recently made it onto the big screen). Beatrix Potter had had her day by then.

Recently, Roch has begun to read to me again a little at night, but only if his voice isn’t too tired. He doesn’t like anyone to read to him, although I have offered. I think it’s a bit of struggle for him to speak with the ventilator mask on but I’m usually asleep fairly soon (especially if it’s American Civil War memoirs). We’re just trying to make the most of his voice, while he can use it.
If he does lose his voice, we hope that he will have access to the new Eyegaze technology so that he will still be able to communicate. I know he fears an admission to hospital sometime in the future, bereft of communication devices, unable to speak. 

Timing is crucial in MND. There can be a six week delay in receiving communication equipment. That could mean dying without a voice. So this campaign means a lot to us.

Please sign up and add your voice, too.