Friday, February 9, 2007

Irresistible femme fatale?

Oh how I wish but regrettably, no. Just a funny voice and a pain in the neck.

Simply, the voice of post treatment phase when living with dystonia. Specifically, laryngeal dystonia also known as spasmodic dysphonia, and cervical dystonia also known as spasmodic torticollis requiring treatment with botulinum toxin injections into the appropriate muscles.

With soft, breathy sounding voice, I returned to the Royal Brisbane and Women’s Hospital two days after receiving treatment for spasmodic dysphonia in the Ear, Nose and Throat Botox Clinic. On this second occasion, I received treatment in the Neurology Department Botox clinic for cervical dystonia. Feeling the effects of bruising and the stress associated with this treatment, it was indeed a good feeling to be heading out of the hospital and off to the airport for the two hour plus trip home to Cairns in Far North Queensland (FNQ).

There has been torrential monsoon rains in FNQ for the past week. Cyclonic weather resulted in wide spread flooding throughout the region and made for pretty harrowing flying conditions. How wonderful that feeling of getting through the door of home sweet home!

Arriving home brought a magnitude of thoughts and feelings to mind and body. No vocal spasms when speaking. However, the tight spasms and broken voice now transformed into soft and sometimes highly pitched sounds that are the confirmation of successful reaction to Botox treatment. Along with that comes the dysphagia resulting in thickening drinks and liquid type foods. This is a small price to pay for ease of speech. Feelings of comfort and relief from painfully twisted neck and tightness of shoulders seems to drape me like a cloak of soft velvet. Yes, it is so good to be home.

Thoughts creep into mind about the need to travel several times a year for treatment. The distance is approximately 3,200 kilometers, round trip. Brisbane is a welcoming city. Medical facilities are available. Transport is excellent. Appropriate services are there. Recreational opportunities abound. There is family support from close family members and also extended family. The needs of people living with dystonia are so much easier to provide for in a city where treatment is available. These kinds of thoughts become temptations to act.

Many people living in non-metropolitan cities as well as rural and isolated areas face difficult decisions about meeting their medical needs and also their social needs. Home and family presents as a pull factor just as the lack of medical services in some geographical areas becomes a push factor in decision making. This may present some people with an experience of personal conflict.

Living with any disability is not just about the disability. The experience encompasses a multitude of factors requiring decisions that would not otherwise need to be made. In relation to dystonia, becoming more aware of this neurological condition and supporting research in your own country will lead to curing dystonia rather than treating the symptoms. Watch out for public campaigns focusing on dystonia during 2007 and consider giving your support in what ever way you can. Many people both now and in future generations will really appreciate your efforts. If you would like to comment, please leave a message. Alternatively, I am happy to hear from you by email at and I will get back to you.

I hope the many links in this article are of interest to you. Wherever you are, I hope your day is full of happiness and joy.

Sue Bayliss. Cairns, Australia.

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