Dystonia Neuro Movement Disorder
Information
Living with, or caring for someone with Dystonia? Join to share information, resources, and support with others.
Members: 270
Latest Activity: 10 hours ago
Welcome to the Dystonia Forum
Recognizing that many individuals with dystonia, their families and friends need a central clearinghouse for information, updates and news about the rare disorder, dystonia; I’ve taken the step to partner up with WEGO Health to offer this online Forum.
If you're new here, please read our welcome thread and don't hesitate to ask questions!
If you're new here, please read our welcome thread and don't hesitate to ask questions!
Setting the P.A.C.E.: Patent Care, Awareness, Collaboration, and Education
Patient Care:
What do people with Dystonia really want?
Your feelings about Dystonia
Medications available for Dystonia
Does your faith or spirituality affect your outlook?
Awareness:
What is 'awareness' as it relates to Dystonia?
What are we doing wrong?
Robert F Kennedy Jr. accidentally turns attention to Dystonia
Collaboration:
Research updates, clinical trials, and more
Events, support groups , meetings, and conferences
Education:
The genetics of Dystonia
Relationship between Dystonia and eating disorders
Medications
Dating, spouses, and marriage
What do people with Dystonia really want?
Your feelings about Dystonia
Medications available for Dystonia
Does your faith or spirituality affect your outlook?
Awareness:
What is 'awareness' as it relates to Dystonia?
What are we doing wrong?
Robert F Kennedy Jr. accidentally turns attention to Dystonia
Collaboration:
Research updates, clinical trials, and more
Events, support groups , meetings, and conferences
Education:
The genetics of Dystonia
Relationship between Dystonia and eating disorders
Medications
Dating, spouses, and marriage
Discussion Forum
New Issue of Dystonia Living Magazine 5 Replies
Started by Rebekah. Last reply by Rebekah 10 hours ago.
Getting Disability, the Process, the Checks...How toos'. 34 Replies
Started by beka. Last reply by Rebekah 10 hours ago.
Got " Dystonia Fatigue " ? Are you experiencing it ? 7 Replies
Started by beka. Last reply by Rebekah 10 hours ago.
How to GET the I'm Moving Two Series...
Recently I have sent out an immense number of coupons for the book I'm Moving Two. The second book is called I'm Moving On... Are U ? , which takes you on a journey from Arce's office, potential denervation, choices, Myobloc treatments and immunity, climbing the mountainous regions of the turkish Rivera, the uncanny caves of Malta, paved bike German streets in Muenster, ICU work with a movement disorder, and eventual treatment failure with medications; closing out with thoughts about DBS. I do not have any more book coupons remaining. However, you can order both books at :
I'M MOVING ON...ARE U ?? ( 218 pages ) 2002
Order Link : http://www2.xlibris.com/Bookstore/bookdisplay.aspx?bookid=13268
I'M MOVING TWO ( 196 pages ) 2000
Order Link : http://www2.xlibris.com/BOOKSTORE/bookdisplay.aspx?bookid=1254
Recent Review by our Own BDrake :
Beka-
I just finished the book. I must say I've never cried so much in my life. Tears for you, tears for me, tears for so many people. So many emotions were felt during this read. Good emotions to feel...pent up emotions. It's so refreshing to sit there on my chase and read words that have been trapped inside my head..my heart...because I was certain that I couldn't express what I was feeling. You did it! You captured every emotion, every angle, every fiber of what I feel every day! You are an amazing gift! Yes, your gifts were given by God, but you listen...you act.... YOU are a gift from Him...to me and countless others. Thank you so much from the bottom of my heart, from the depths of my soul...Thank you for everything!
~Becky
Dystonia is: Loss of control. Loss of self-image. Loss of self-worth or self-value. Loss of function. Loss of "what was" and "what was to be". Loss of self-purpose. ~Beka Serdans, RN (I'm Moving Two; A Poetic Journey with Dystonia)
Beka's reply - My pleasure to all...
I'M MOVING ON...ARE U ?? ( 218 pages ) 2002
Order Link : http://www2.xlibris.com/Bookstore/bookdisplay.aspx?bookid=13268
I'M MOVING TWO ( 196 pages ) 2000
Order Link : http://www2.xlibris.com/BOOKSTORE/bookdisplay.aspx?bookid=1254
Recent Review by our Own BDrake :
Beka-
I just finished the book. I must say I've never cried so much in my life. Tears for you, tears for me, tears for so many people. So many emotions were felt during this read. Good emotions to feel...pent up emotions. It's so refreshing to sit there on my chase and read words that have been trapped inside my head..my heart...because I was certain that I couldn't express what I was feeling. You did it! You captured every emotion, every angle, every fiber of what I feel every day! You are an amazing gift! Yes, your gifts were given by God, but you listen...you act.... YOU are a gift from Him...to me and countless others. Thank you so much from the bottom of my heart, from the depths of my soul...Thank you for everything!
~Becky
Dystonia is: Loss of control. Loss of self-image. Loss of self-worth or self-value. Loss of function. Loss of "what was" and "what was to be". Loss of self-purpose. ~Beka Serdans, RN (I'm Moving Two; A Poetic Journey with Dystonia)
Beka's reply - My pleasure to all...
New C4D Website News
We have revamped the http://www.care4dystonia.org creating a unique look with easier accessibility to links, information, news, publications, recommended books, blogs, Artistic Forum, use of oral meds, botulinum toxin, DBS, selective denervation and much more.
Check out the new website today !
Check out our Stories of Hope and Newsletter.
We have partnered with the employment site Monster.com , in the area of dystonia awareness, as I continue writing and making the word and condition known to man. You can find the links on the home page of the c4d site.
Check out the new website today !
Check out our Stories of Hope and Newsletter.
We have partnered with the employment site Monster.com , in the area of dystonia awareness, as I continue writing and making the word and condition known to man. You can find the links on the home page of the c4d site.
Comment Wall
Comment
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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
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Comment by beka on July 8, 2008 at 11:57pm
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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.
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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
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Comment by beka on July 5, 2008 at 4:14pm
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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.
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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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Comment by Robin Wood on June 30, 2008 at 11:17am - I'm fairly new to the group but not Dystonia. Now that I am becoming more familar with this fantastic website I thought I'd pop in and say "Hello".
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Comment by Trudy on June 23, 2008 at 3:20pm - I am new to Dystonia and new to this website. I already feel at home here with the amazing individuals. I look forward to being a part and I thank you in advance.
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Comment by beka on June 22, 2008 at 2:59am
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Don't be shy in joining this group. Write from the Heart !
beka
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Comment by beka on June 22, 2008 at 2:57am
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Welcome to new members to this new Educational forum. over time you will find new up dated information. Also do check the www.care4dystonia.org website for new updates on pain, nutrition, DBS, botulinum toxin therapies and more. I will be away until the 4th of July jumping into a pool and resting up a bit, but will be adding pointers to posts. Add your questions, theories, symptoms and descriptions, blogs etc.
beka
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Comment by beka on June 19, 2008 at 3:11pm
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Well, I must say this is turning into a nice success. Please have others join in on this Educational Forum.
Link :http://community.wegohealth.com/group/dystonia/
As Darwin said " It's not the strongest of the species who survive, nor the most intelligent, but the most responsive to change "
beka
infoc4d@aol.com
© 2009 Created by Marie
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