Wednesday, November 7, 2007

Dystonia Australia: where to from here?

Thoughts passing through mind about Dystonia Australia suspending operations reflect feelings in response to the initial news of the action taken by the Board of Directors. The organisation, Dystonia Australia, represents our orbit of experiences, provider of educational resources and, our hub of communication and support. Insufficient financial and material support take their toll on any organisation. Australians with dystonia, their family members and indeed our broader community, need to pull together in a coordinated approach ensuring recovery of our organisation.

Recovery from the initial shock of unexpected news is an experience of grief. Initially we may feel numb and bewildered followed by feelings of anger, sadness and a desire to bargain in some way. This is really a subconscious strategy attempting to delay the inevitable, although it has already happened. However, we do come to terms with the situation by finally accepting the change.

The loss of our National Coordinator, Nicola Dawson, is not only the loss of someone many of us have come to love and greatly respect. Nicola remains in mind's eye as the 'persona' of Dystonia Australia. The face to an organisation representing our needs, our fears, our joys, our togetherness, our specialness. Losing Nicola is something like losing a reflection of our self identity.

Where to from here? Due to the geographical vastness of our Nation, it is difficult for many of us to have input into discussions taking place between the Directors of Dystonia Australia. However, we are able to support each other in our own local areas and continue the good work previously accomplished by the National Organisation.

Many support groups start with one person mentioning their need for contact to another person who is in a similar situation. A group is two or more people meeting together. Sound simple? Yes, it can be!

If you are not a member of a local support group and do not yet know any one else who has dystonia, a good place to start is in your treatment clinic. Talk to other people there. Ask someone in your treatment team to introduce you to another person with dystonia. Look up web sites for support group contacts. Enter an on-line discussion forum and introduce your self as a first time on-liner. Email this 'distonic' writer so we can get to know each other. Creative thought focuses our attention on identifying solutions. This leads to wonderful outcomes!

Those of us who belong to support groups are well aware of each others experiences - we find we share a lot in common! Read many of the excellent dystonia sites. You can find them through your search engine. In addition to this article, previous blogs on this site all have highlighted links to informative sites just waiting for you to explore them.

Watch this site for information on our local Atherton Tablelands and Cairns Support Group meeting in two weeks. I hope the ideas in this article are helpful to you. Thank you for spending time here and sharing this space with me.

Sue Bayliss. Cairns, Australia.

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