DYSTONIAS. Do they impede me in daily life? Am I normal?

The first article highlighted below explains the dystonias, classification, common types of dystonias, pathophysiology, clinical features and testing, and treatment. The second article presents a good explanation of torticollis, now preferably referred to as cervical dystonia. Both offer good reading. You may wish to print off for future reference or save to a file.

http://www.emedicine.com/pmr/topic235.htm

http://www.emedicine.com/neuro/topic377.htm

What about dystonias. Do they impede me in daily life? Am I NORMAL?

Does it matter? You bet it does! What exactly does ‘normal’ mean anyway? A different thing to different people, is my idea. Most dictionaries state ‘normal’ as something meaning, behavior unimpeded by mental or physical disorder. So? Where does that leave us? Fortunately, we do understand each other. Unfortunately, it seems to be only our family and our medical treatment teams who really understand us – and sometimes some of them are not always spot on. Most people outside those categories are not coping too well listening to our speech, getting out of our way in supermarket isles, standing close to us when we get the shakes and nods – especially in a coffee shop or at an auction! How about holding up the line at a busy taxi rank for those of us who need to maneuver like a combination of Elvis Presley and the local rap dance wiz? Especially when some of us with spasmodic dysphonia attempt to quickly tell the people we will only be a moment getting out of their way!

So many of us can relate to living with the various forms of dystonia. It is so much less stressful when we can explain to others about the great things that are happening in areas of support groups, getting to know other people who are as normal as us, and also being able to offer a wide range of accurate information about the dystonias.

My experience of the week occurred in the shopping centre today. I have a respite carer who takes me shopping two hours weekly, allowing my son to have a break and also alerts astute staff at the supermarket they need to get out of my way on that particular day!

Today, in my usual cheery way, I greeted shelf packing staff and offered to put a packet back on the shelf for a young lady who had knocked it as she was getting onto a step stool, ladder thingy. While looking at foods, my carer did not notice my good natured turn of the day. Then, it all happened at once! The girl on the ladder came down with a thump. My carer came running toward me with a look of abject horror on her face. Children ran screeching for their mothers. A supervisor yelling for someone else to come to isle whatever it was. There I was in all my splendor. Spread eagled on the floor. Cartons of every kind of cereal tumbling down from above. Oh dear. It had happened again! Getting the shakes. Doing the head nodding thing. All at the same time as doing the involuntary crab walk waltz towards where I had wanted to go. It all ended in a somewhat dramatic moment of embarrassment. Trying to croak out to everyone that I really was okay just didn’t seem to come out right either! Sound familiar? With pride hurt more than anything else, we finished the shopping and headed for home. I’m sure many of us share embarrassing moments!

Don’t forget, leave a comment if you would like to and have a great day.
Sue Bayliss. Cairns, Australia.