"What exactly did you say?"

Sound familiar? Yes, indeed. For many of us such responses are commonplace! We need a strong support network.


(To Indigenous Australian readers, I respectfully alert you to my use of a recently deceased person's name in this article. I apologize for any distress that reading this article may cause. No offence is intended.)


When speaking to Peter Seth my 11 year old Grandson on the telephone, I requested he tell his parents that Frankie McIvor died yesterday.

"Yes Grandma, I'll tell them," came the reply. Silence.

"Would you tell them now, please Peter?" I requested.

To my dismay I heard Peter shout out "hey Mum, Dad, Grandma said to tell you right now, some guy called Frank went to Mackay yesterday!"

Hm. Well, my daughter Elizabeth and son-in-law Duncan came to the phone asking, "what exactly did you say?"

Another experience notched up in the life of a spasmodic dysphonic!

I feel so disrespectful when I laugh about this incident but honestly if we don't laugh, we cry!

Dystonia Australia has until recently been the main National support organisation in this country for people with any of the many forms of dystonia. Dystonia Australia has now ceased operations due to insufficient financial and material support.

If you are able to offer support in any way, please email me or leave a message on this site. Alternatively, if you live in Far North Queensland or even further afield, consider attending our local support group meeting here in Cairns on Saturday 17th November at the Cairns City Library, 151 Abbott Street, Cairns. We are meeting from 11am to 2pm in meeting room number 2. You are most welcome. Luncheon provided, no charge.

There are some excellent highlighted links in this article. They will lead you to a better understanding of Australian Indigenous issues, information about many forms of dystonia and, some delightful information and images of Cairns, the Far North Queensland area and Mackay. Don't forget the two links below.

Sue Bayliss. Cairns, Australia. (s.j.bayliss@bigpond.com.au)