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I notice the other 3 topics on the forum are from 1 year & 9 months ago & 1 year & 11 months ago.
The dips responsive Dystonia topic had a question posted by a member, without one response…..go.to.margot (March23)
My post also on March 23 was for Mandy as she introduced herself on 20 January with screen name of mbraund
Perhaps people who joined this group & have Dystonia should be encouraged to introduce themselves on this forum to promote more conversation amongst themselves & share their issues & chat back& forth.Mandy
I suggest checking out this link for https://www.facebook.com/AustralianDystoniaSupportGroup.
I believe it is a closed group you can join on Facebook.
You might find some support there.No one seems to post on these forums. Does anyone monitor the feedback????
Where might I get support or interaction with others who have dystonia, in my case Meige Syndrome/Craniofacial dystonia.
Feeling somewhat let down by joining the DNA.New to this forum & haven’t seen a lot of interaction or forum posts.
Is there another forum I should be posting to since joining to engage with other people?A query I do have is related to essential tremor treated with DBS.
Is there a support group for people with this, so not specifically dystonia?
thanks. -
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