Dystonia Neuro Movement Disorder

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Comment by beka on August 26, 2008 at 9:49am

A message from Rosemary _
There is a book out written by Sandra and Matthew Blakeslee (science writers for NY and LA Times, respectfully) that has a chapter/section about Dystonia. In particular they talk about Dystonia as a hyperplasticity. Very interesting and insightful, I thought. Title is The Body has a Mind of It's Own.
beka

Comment by beka on August 26, 2008 at 9:27am

Happy Labor Day to Everyone !

Wild Geese

You do not have to be good
You do not have to walk on your knees
for a hundred miles through the desert, repenting
You only have to let the soft animal of your body
love what it loves
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air
are heading home again.
Whoever you are , no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting
over and over announcing your place
in the family of things.

Mary Oliver

beka

Comment by Karen B on August 18, 2008 at 6:45pm

just wondering if anyone has heard of a link between dystonia and sleep disorders. My 16 year old daughter was diagnosed with dystonia last year when her right foot turned in 90 degrees..she has been on crutches/wheelchair since that time. We have tried Artane, Tetrabenazine(very expensive) and several botox injections-she was cleared for DBS and had her pre op last week....out of the blue we got a call that they had postponed/cancelled the dbs as they would like to do more testing on her. She has very low iron counts and they are wandering about her sleep habits!!! any info wo uld help...we are feeling frustrated(not to mention our daughter)

Comment by nhtom on August 14, 2008 at 11:43pm

Just wanted to take a minute to say thank you to Beka. She has been an incredible inspiration and devotes an endless amount of her time. I know that there are many others here that feel the same way.

Comment by beka on August 6, 2008 at 12:02pm

YES, I'm trying to combine common posed themes in to larger categories as there is an awful lot of information to take in for new peeople, including myself...I read absolutely EVERY SINGLE post, sometimes from work at 3am...
beka

Comment by TwisterG on August 5, 2008 at 7:48pm

In regards to this comment, where do I find the "research post"? Is that one of the 68 discussion forums? Just trying to find my way around :) Comment by beka on July 28, 2008 at 5:12pm
I have combined a few new posts into the research post to try and keep things somewhat organized.

Comment by beka on July 28, 2008 at 5:12pm

I have combined a few new posts into the research post to try and keep things somewhat organized.
Trans-Magnetic Info posted by Joe on the Research Post.

beka

Comment by beka on July 16, 2008 at 8:31pm

Welcome to New Members ! And to Friends !
To maintain consistency, try to keep your post related to the main POST ie. Research Updates etc. You will find an immense amount of information on this Forum. It is not intended to be a social network, but one that promotes, delivers correct dystonia education to those of us afflicted with the disorder. Do not be overwhelmed by all the information, you will learn new and old items. Take time in reading the posts. As time goes on, I will obtain guest moderators to help answer your questions !
To the beach in the morning !
beka

Comment by Robin Wood on July 12, 2008 at 8:48am

Karen You aren't alone in being lost, LOL. I think all us myspacers have had a "getting use to phase".

Speaking of myspacers .. I've got a new motto "Leave No Dystonian Behind". Help me get the word out, if You have a couple spare minutes email those in the group about this Forum and keep posting it in bullentins and blog it too, I did a blog if You want to copy mine. Put a link on Your UTube accounts too.

Where is everybody else from ???

Robin

Comment by karen on July 11, 2008 at 9:58pm

hi everyone..i'm new to the group..i have followed many of my friends from our myspace dystonia group and i'm looking forward to meeting all the others in this group and any information that will help living with this disorder easier.;

i have had torsion dystonia for 24 years..it has pretty much taken over every part of my body..i use an electric wheelchair to get around..so i pretty much live my life sitting on my behind!!..even though dystonia has taken away many of the things that i loved to do..i fight every day to make it thru with a positive attitude..a smile on my face and to hopefully accomplish something..i am pretty much housebound so my friends that i have met online..and especially my friends from myspace group are my link to the outside world and have been a big help in keeping me going..

well that's about me in a nut shell..i'm off to see if i can find my way around in here..hopefully i'll be able to find my way back here!! karen ;0)

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