Dystonia

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Comment by beka on July 17, 2008 at 4:19pm

T- Shirts ARE Ready. - 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 beka on July 14, 2008 at 10:27am

Welcome to all the newcomers over the past few days. ICU work has not been a pleasant venue the past 3 days. You can read more in the Feelings about Dystonia section.
Do spread the word about this Forum as Robin says. It is not intended to take away from social networking, but has a focus on educating, problem-solving, theorizing etc. about dystonia. So, anyone can join this non-inclusive Forum. Open to All !

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)

Comment by beka on July 9, 2008 at 6:41pm

If you are trying to leave me a message , please send it directly to infoc4d@aol.com ; for some reason the message server is a bit slow today. I have added new topics for discussion and hope that all of you will contribute in some sense. What you have to say is IMPORTANT. What you feel is just as IMPORTANT. You matter. I applaud all of you for taking the chance to join this Forum.
Love to All-
beka

Comment by beka on July 8, 2008 at 11:57pm

The Dystonia Retreat Plans remain only a dream with a few other people. Money is required to implement something like this. But I envision nature, relaxation, colleagueship etc . with others for 2-4 days where flowers abound.

beka
www.care4dystonia.org
Retreat Idea is part of C4D plans for the future.

Comment by Linette on July 7, 2008 at 6:53pm

Hi everyone, new to the group but not Dystonia, have to say its about time someone had this brainwave, what a brilliant idea to have medical reference at hand. Well done all involved, and hello new friends and old friends.x

Comment by beka on July 5, 2008 at 4:14pm

Hi- I am adding the following Medical Disclaimer just to ensure that everyone understands that this is a site intended for education of dystonia online. Do not make any changes with your treatment plan without your physicians' approval. Although I have a strong medical background; don't always assume that I'm correct ! Medicine constantly changes asare treatments, regimens and care.
beka

Medical Disclaimer: The information contained in this Form is for informational and educational purposes only. While it is based on professional advice, published experience, and expert opinion, it does not represent a therapeutic recommendation or prescription. C4D urges you to consult and obtain medical advice from a licensed, trained, and competent medical provider. Any decision to use a healthcare professional-medical care center-clinic listed on this Forum is the sole responsibility of the patient-reader-user. Care4Dystonia, and it's Founder, and this Forum, is not liable for healthcare choices, decisions or possible-actual consequences of medical or surgical therapies chosen, sought or obtained by patients, visitors, and others affected by any form of dystonia on this Forum.

This site is a complimentary site for www.care4dystonia.org in partnership with WegoHealth. Thanks for Joining with great conversation.

Comment by twistedjam on July 4, 2008 at 12:17am

I can only say that ever since I got on board here I am amazed at the source of information!

It sure is a nice home away from home to know that there are people who understand and care on this remarkable website!

Thank you

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