Thursday, January 25, 2007

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.

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.


Megan Bayliss said...

Well. That would have been a sight! Lucky it was packets that fell upon you and not cans of beetroot. A dreadful experience but, I must admit, I had a laugh at the image of you 1) crab walking and 2) spread upon the floor adorned with breakfast cereal.
Did anyone but your carer come to help you?
It annoys me that when the public see a person with a hidden disability that they often assume the person is drunk.
Surely something else can be done to educate the world about dystonias and spasmodic dysphonia.

Merv Bayliss said...

Sue read you article can not imagine what you have to go through but in true Bayliss spirt you manage and can still laugh about it
I agree with Megan that people should be educate about this disorder
Bayliss family in Heathcote NSW are thinking of you and hope to see you soon

Sue Bayliss said...

Thank you Megan. Funnier things have happened but fortunately, not too often. I believe a woman is more likely to attract support following a fall in a public place than a man. I agree with the perception about intoxication. Unfortunately for men who have a similar experience, some people do seem to assume there may be alcohol or some other substance involved and so are less willing to instantly react in a helpful manner. The best aim for good education is I believe, to get appropriate information into the public arena as frequently as possible. Family support is also a good way of doing this as there is a ripple effect through each person's contacts. Mum XX

Sue Bayliss said...

Hello Merv & co. Lovely to read your comment. Thank you. I often think of you all. David is now in Ipswich but still recovering - after 18 months! Has been a long haul. War service has done a lot of long term damage to those in our family. David is Peter all over again! Darren and Jill are travelling with me to Whitley Bay/Tyneside area for the month of May. Darren makes sure I don't trip up people with my walking stick etc and Jill is going to do all the tickting, passports, customs etc things for us. Be back in Oz on 3rd June. XX

Yvonne said...

Oh what a terrible experience - lucky for your sense of humour which can go a long way at times like those.

You have great recognition and support from your family

I have a wonderful family. Two beautiful grown up daughters and four grandchildren and a close extended family. I lost my husband to cancer in 1998, but I now have a loving partner.

But we of the stoic Aussie and Stiff upper lip upbringing were not encouraged to discuss our aches and pains, which makes for a lot of isolation and lack of understanding when you have a long standing disease which has largely been ignored. I dont see this as their fault, because on my part its been a lot about suffering in silence - you know pain is personal and all that.

But at times Iv'e longed to scream out. Hey! dont you know how much pain I am going through right now. And obviously the answer has to be no, because they clearly dont and I guess thats my fault. Although we all know that long standing undiagnosed pain can be interpreted by others in myriads of different ways. Hence another reason for suffering in silence.

And that also went for every doctor, chiropractor, physiotherapist, and various other specialists, who also clearly could not SEE MY PAIN - over the period of twenty something years that I went undiagnosed and if it werent for my head that one day started to wobble and shake and become obvious to all I probably would still be undiagnosed.

Heres hoping my little story might help others of us out there who are suffering similarly.

Thanks for the links Sue - I have printed them and will read them tonight along with The Spasmodic Torticollis Handbook which I received in the mail today. The internet is a wonderful thing!

Did you receive your copy of twisted yet? I am still waiting for mine.

Sue Bayliss said...

Hello there Yvonne, it is so great to see your comment. Thank you.

Know exactly what you mean about the generational thing - suffering in silence must have been an even bigger thing in generations prior to ours. Thankfully, that has broken down a lot. Unfortunately, there are still barriers there as you and I, along with many others, know only too well!

I feel sad to hear you lost your husband to cancer. Dreadful experience. Good to hear you have found someone to share life with now though. I am one of four siblings, we all had cancer. Two brothers died but my sister and I are surviving cancer. Both of us have had two bouts of major surgery each and other treatments to follow up with.

Families are great, for most people anyway. We are both fortunate in that regard. My extended family is terrific too. Both on my husband's side of our family and on my side of our family. We live in such vastly differing directions that it is hard to see eachother often.

My husband died in 2003 of end stage renal disease and end stage cardiac disease. We all really miss him.

I think the The Spasmodic Tortillis hand book is very good for us to refer to and also for general educative purposes.

Twisted. Have not received my copy yet and am wondering why it is taking so long! If not here by early next week, I will follow up my order.

Thank you for sharing your story Yvonne. It is not an easy thing to do however, I strongly believe that by doing so we can support other people who may be wondering whether or not they really do have something wrong with their body or is it all in their head. Although there is so much information around now about dystonia, it seems many professional people just don't keep their general knowledge up to date. I still have experiences where doctors in accident and emergency centres admit that they have never seen anyone with dystonia and very clearly doubt the existance of the disorder. It is such a destructive attitude towards people who really suffer from any of the distonias. It is only ourselves who can hold medical people who doubt us, accountable for their statements to us and to others around us at the time. I suggest you take your spasmodic torticollis handbook with you to medical, physio, whatever, appointments and show it to those people. This has just given me an idea. Will go do another blog about it.

Hope the suggested articles you printed off are useful. Some may think such information is too academic but I am a firm believer in making information available to all people. It is surprising how many people experience additional growth through knowledge of this kind.

Stay well and stay in touch. XX