I'm not sure what makes me sadder, watching Chris lose the ability to walk and use his hands or hearing him lose the ability to talk.
The voice, it is something we all take for granted. It's how we express ourselves, it's how we communicate. Hearing the voice of others brings us pleasure, from recognising the voice of a loved one down the phone, hearing someone say they love you, or listening to a beautiful song, all made possible with the voice.
Then one day you get this awful disease. It will slowly cause your motor neurones to die, it might start with your legs, it might start with your swallow, eventually it will most likely affect your voice.
Chris's speech started getting slurry quite early on, it is slowly deteriorating and has always been much worse when he is tired.
We've just come back from the first holiday we've had in years. It was good to get away, but as I said in my last blog, I think it was tough for Chris having to be wheeled around, but I also noticed how quiet he was too. Even now we are at home he is still pretty quiet. I asked him if he felt his voice was deteriorating and he said that his head knows what he wants to say, but he can't always form the words. If he takes a deep breath it helps, but that takes effort. I asked him how it made him feel and he said 'out of the ordinary'. He feels very self conscious that he sounds slurry and I think that is causing him to be reluctant to speak sometimes. That and the deterioration in his hands and balance have made him feel quite miserable at the moment.
I don't think anyone who hasn't lost their voice permanently can really understand what it must feel like. I try, but how can I? I can still rabbit on about all kinds of inane stuff, I can sing along to a song if I feel like it, I can shout and get angry if I need too, but just saying a few short sentences is an effort for Chris now.
I know he has been referred to the 'Speech recognition 'people, but I hope there won't be a gap between his speech really deteriorating and something to help him communicate being set up. They said the waiting list is long.
Why does MND have to be so cruel ? Why does it have to be so inevitable? Why did it have to choose my darling husband ? This disease does seem to pick on the truly nice people.
