[go.to.margot]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1482

Hi Paukapono
Thanks for this post – I wonder if it is for me rather than Mandy?
Thanks for your suggestion.
I have been a member of the Australian Dystonia Support Group for a long time and find it very helpful. I hope you’ve been able to find support there or elsewhere.
I’m on the advisory board for DNA (although not on the organising committee). I thought I should post here myself to see how the posts are going.
I can see that the number of posts is quite small. I will keep this in mind when giving my advice on the DNA advisory board.
DNA is quite new so still setting up so I hope you will hang in there with membership. DNA has an advisory board with some of the best experts in dystonia in Australia (I’m just a patient rep, not one of the experts). At the moment the focus has been on using their expertise to contribute to developing material and information about dystonia such as through brochures, the website and seminars. This information will be used by both patients and professionals.
The DNA activities will develop further over time so I hope you will find it useful to be part of the network as it develops. It is very important to have DNA as a registered group to lobby for support for dystonia.

[go.to.margot]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #1473

Hi there

I’m Margot and I have cervical dystonia. I was diagnosed in 2000. My symptoms first appeared only when playing my instrument at work but then started happening away from the instrument too.
My symptoms became worse in 2009 when an involuntary left turn started as well as my involuntary right turn.
My treatment is regular botox injections and I work part time in admin now because of the condition.
I started tai chi a couple of years ago and have felt like it has improved my quality of life.
I’m quite active in supporting people with dystonia in various groups, although I am keeping some more limits around it so that I don’t get worn out.
I long for the day when some better treatments are found, so I enjoy hearing about new research.

Margot

[Author]

Posts