Following my last post and the goal to reveal snippets of life with living with dystonia it felt apt to share the first ever post I made on my old The Ups and Downs of being Wobbly in 2013. It only feels like yesterday.
Dopa-responsive dystonia affects all my muscles now including my voice.
The Complicated Business of Talking
I never realised how complicated talking and holding a conversation was until it began to go pear-shaped. To talk to someone many things have to occur:
1, you need to listen and remember what the person is saying
2, you need to think of an answer and the words you wish to use to express it
3, send these words to your voice box, tongue and muscles in your mouth
4, the voice box has to do what voice boxes do and your muscles have to co-ordinate themselves so the words come out.
If any of these stages falter the conversation can become tiring, difficult, frustrating and bizarre. Sometimes only one or two stages of the above partially or completely fail so I can work round it. Other times nothing will work so it’s easier to keep my mouth shut.
I can ask my family multiple times the same question before I will remember it. They must get sick of me asking 5 times whether they would like a cup of tea before I can remember it long enough to get to the kitchen. I would definitely be useless as a waitress. Telephones and having conversations in supermarkets are the worst. I think my brain decides that holding the phone and having a conversation in a noisy place is too hard and it prefers to go on strike.
There are times I know what I want to say. I can even visualise it but the word refuses to come. Good job my family are good at listening to convoluted explanations when a simple sentence would have done. Why say “it’s on the table” when you can say ” it’s on the thing in the kitchen. We sit at it for dinner”. Gestures are good too. My daughter will win at a games of charades with the practise she gets.
Other times, the words are there but trying to get my tongue, voice box and muscles in my mouth to work together is impossible over the stupidist words. Why is it so hard to say peas or beans or yes? At least the long explanations can resolve that obstacle with “green round things” or “red round things”. Again, charades work or you can play a game of fill in the blanks of a sentences. For example, “Would you ____ a cup of ____ ?
If all else fails, you can just be quiet and nod in the right places.
I am so lucky I have a great family who accepts our new way of communicating and they are becoming very good at it. I am lucky I have my trusted yellow ones (Sinemet) which gives my brain a kick start so I can have periods of the day when talking is easy and understandable. In these brief periods, I can do the phone calls I need to make and talk to friends when they visit. I guess, however tiring, difficult and frustrating talking can be, it can make life different and more interesting.