Coping with Speech and Communication - Motor Neurone Disease: A Customer's Overview

Hi, I'm Ian. As a customer of Bluebird Northumberland South, I have been asked to give a little more information, about coping with Motor Neurone Disease (MND).

The condition has two salient characteristics. Firstly it causes deteriorating speech.  Secondly, it rarely affects the intellect. Both characteristics apply to me.

I am perfectly clear in my mind, as to what I want to say. But the MND condition prevents me from properly saying it. This can be both a blessing and a curse. It is a blessing, because I am fully aware of what is happening during a conversation. I can see whether or not I have made myself understood.  If not, I have the wherewithal to attempt - by whatever means are available - to put myself across to the best effect.

It can be a curse, because of the obvious frustration involved when communication fails.  In such cases, I find it best to keep my cool, and to try again.

With Care Supervisor Allison                                            With Care Manager Sue

What other ways of communicating are there, besides actual speech?

I find the Voice Pad an essential tool. I can prepare messages for telephone calls that I want to make, or for expected face to face conversations.

With strangers, especially over the telephone - I find that it helps tremendously if at the start, I play a pre-recorded message saying: 'my speech is bad because I have Motor Neurone Disease. You will have to bear with me'.  The listener usually understands, and the conversation goes at a different tempo. I am allowed time, say to give an immediate reply on my voice pad, to an unexpected question

Then there is E-Mail - another vital tool.  Friends, carers and social workers, give me their e-mail addresses whenever possible. They realise, that with distant communication e-mailing is easier for me than say, phoning.

Then for face to face talks, there are gestures and facial expressions. These can be accompanied by the appropriate voice sounds.  Such communication methods should not be underestimated.

If, during a conversation, I want say something which is complex, I find it best to whittle it down to a simple statement.  Then later, if I feel the need to elaborate on it, I prepare a message on my voice pad, or I e-mail the person concerned.

Generally, I manage to communicate quite well with the Bluebird Care staff. It seems to work best, when they concentrate, face me directly, and try to read my lips.  But weirdly, a carer in another room can sometimes decipher what I am trying to say, and shout it to the carer who is in my presence.

Before carers first visit a client with MND, are they always briefed about the condition - notably that the client's mind is fully 'with it', although the speech may be bad.

Really, the essence of human communication, is putting across your mind to another person's mind.  As long as the message is put across between the minds, that is all that matters. It does not matter what means are used. 'Mind over matter' - you can bypass Motor Neurone Disease.  It is just physical. Mind is King. It is eternal.

'Where there's a will there's a way'. Somehow I'll put myself across - with the help of my voice pad, e-mail, facial expressions and gestures.

Friends and social workers too, are crucial in giving me a voice and in enabling communication. These include of course, the dedicated staff of Bluebird Care Northumberland South.

The above are just my own personal comments. I hope they help.

Ian has also written another blog: How to manage Motor Neurone Disease.

If you or a loved one wishes to discuss some homecare support options with Bluebird Care Northumberland South, please give us a call on 0191 2502244.

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