Dystonia Neuro Movement Disorder

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Comment by Robin Wood on September 18, 2008 at 9:08am

Thank you WEGO for the cool lil' Badges & Widgets, what a great way to increase the networking capabilites. If anybody hasn't yet gotten theirs, simply look to the right and you'll see the link --->

Robin

Comment by beka on September 16, 2008 at 2:14pm

New Info :
Click to :
http://www.ispub.com/ostia/index.php?xmlPrinter=true&xmlFilePath=journals/ijn/vol2n2/dystonia.xml

beka

Comment by beka on September 16, 2008 at 11:42am

Great Job - T. We all can catch someone out there who knows not what they have had for years !
New Posts and answers updated !
beka

Comment by Thorns on September 11, 2008 at 5:19pm

I was out today at Wal-Mart and met a lady with sign's of dystonia with her head forward and chin on her chest and she could not lift her head. I gave her some information which I carry in my purse all the time and she did not know what she had but had been to a bone specialist, so I'm hoping she will be able to get the right diagnoses soon because she said her head had been like that for a year. I gave her my phone number and I hope she call's so I can send her more information. Thorns

Comment by beka on September 11, 2008 at 7:27am

I applaud our Robin Wood for creating a promotional video. Well done - Robin. I am amazed by the all of the information I have learned here myself. You can watch the video under the What is Awareness Post. Anyone desiring to assist in developing a powerpoint presentation that can be distributed to medical schools , your own doctors, please let me know. I applaud each and everyone of you for being honest, forthcoming, and truly friends.~~~~ beka

Comment by Distoweb on September 10, 2008 at 6:39pm

Hello, kind people from this great place.

This is me trying to share every single detail and experience with other people living with dystonia. I started to live my torsion dystonia when I was about 11. Now I am 43 and I feel I can help other people with my personal experience, my way of facing this illness now and in the past, and so on.

I use to say that, of course, I am not a model of anything, and I also say I trust people who unconditionally help you with an extra bit of understanding (something so really expensive to get these days).

Understanding... maybe the best medicine to deal with.

Moreover, my particular familiar conditons became more difficult than ever when my wife was diagnosed multiple sclerosis. At that moment I knew I had to work harder for her, for our son and, why not, also for other people with this kind of trauma. I hadn’t fallen into depression until then, kind of a miracle, and there had come many other threatens to be faced.

In a simple way, and absolutely far from any interest but showing what I will show you now, I have spent a couple of months designing and developing a web place from which I try to help sharing very carefully the best of me in a practical way and considerating not only medical and physical aspects but social and emotional issues too.

http://webs.ono.com/distoweb

has been recently published (2008 - Feb, 6th.), in Spanish, and since April 9th also in English, for people in USA and other parts all over the world.

Some weeks later some people told me I should have set any image or picture, even one picture of me so that they could “put a face to your (my) words”, those words I had shared very carefully with the best of me. And there I am...

I hope I will reach many patients of dystonia who can find my web useful in their lives.

Please, this webpage is as yours as mine. Do not doubt doing with it whatever you feel it can be useful to other people.

Thanks for being there and work for all of us.

Fernando

Valencia-Spain (European Union)

Comment by beka on September 8, 2008 at 5:05pm

New Posts and Answers added to the Dystonia Forum ! Debate !
Be heard. Ask. Receive an answer. Share a thought and an idea today. Here we come !!
beka

Comment by Thorns on August 30, 2008 at 12:15pm

Happy Labor Day to you all, let's remember all those who have lost their lives in job related accident's and those of us who no longer can work because of dystonia, and wish them well.

Consistent and durable joy is generated
when we pursue a passion
that is strong enough
to carry us past pain,
something so meaningful
and absorbing
that we can ignore
unhappy circumstances.

-Thomas Kinkade
Thorns

Comment by Robin Wood on August 30, 2008 at 10:59am

Happy Labor Day !!! .... I hope everybody has a relaxing and safe weekend. AZ is under cloudy and stormy skys for the weekend, a treat for sure :)

Comment by Rosemary on August 27, 2008 at 7:43pm

Beka: I loved that quote you shared, attributed to Darwin: "It's not the strongest of the species who survive, nor the most intelligent, but the most responsive to change "

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