Dystonia Neuro Movement Disorder
Information
Living with, or caring for someone with Dystonia? Join to share information, resources, and support with others.
Members: 268
Latest Activity: 1 day 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
Got " Dystonia Fatigue " ? Are you experiencing it ? 4 Replies
Started by beka. Last reply by Karen 1 day ago.
FLU Season and Dystonia 26 Replies
Started by Cindyrella. Last reply by Rosemary 1 day ago.
HAS ANYONE TRIED THIS? "Psychogenic" frustration 12 Replies
Started by Elaine. Last reply by Rebekah Dec 2.
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
Add a Comment
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Comment by Rogers Hartmann on July 18, 2009 at 1:21pm -
Quick post about PRESS FOR DYSTONIA. In the Dallas-Fort Worth area (the 5th largest market in the U.S.) there will be a feature on Dystonia. THIS Sunday at 10pm news and Monday at 6am-ish. An anchor of NBC Channel 5 came to my family home in Dallas to interview me. Feel free to spread the word to those who live in that area. And it will be on line, as well. They interviewed me, as well as my mother.
Also, two national magazines have asked me to write features for them. I hope to do us all proud.
Rogers
xo
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Comment by BDrake on July 17, 2009 at 8:41am - For all of those who have a twitter account, Wed July 22 we are all going to try to tweet about #dystonia (w/ the hash tag # ) to get it listed as a trending topic. Post information, ask questions, mention how its affecting you...just use the word #dystonia as often as you can...Thanks guys!!
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Comment by MichelleSchwinger on July 16, 2009 at 5:17pm - Has anyone seemed to have Botox not work well, and then move on to a interthecal Baclofen pump? This is where I'm at, and I'm pretty afraid of the idea!
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Comment by Jen on July 4, 2009 at 10:58pm - Thanks to all for all your thoughts, prayers and support!
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Comment by Jen on July 4, 2009 at 10:57pm
- Thanks Canary. I really appreciate your thoughts. I'll be updating about my surgery on my caring bridge site for those who want to check it. You have to sign in to caring bridge first and then you can read and post. http://www.caringbridge.org/visit/jenelle
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Comment by Canary3 on July 3, 2009 at 2:09pm - Dear Jen, You are so courageous! I have learned much from reading your comments,and pray for your quick recovery from your upcoming abd, surgery. God Bless.
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Comment by FelicityNexus on July 2, 2009 at 5:44pm - Beka i really enjoyed the first book I'm moving on and i was able to read the whole thing : ) !!! Thankyou
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Comment by Seafrontanne on June 24, 2009 at 11:50am - I have tried for attendence allowance for nearly fifteen years and have always had to appeal.I am appealing to the DHSS tribunal at the moment for the umpteenth time but so far I have always been turned down.It's about time that Dystonia was taken more seriously because the quality of life is very disabilitating
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Comment by Seafrontanne on June 24, 2009 at 11:30am
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I have suffered with Spasmodic Torticolis Dystonia for any years and receive Botox injections every three to four months.Sometimes I get a little relief from the pain but the condition never seems to get better.It has got to a stage where I cannot go out on my own because I cannot turn my head to the left.I am using crutches around the house and when I do go out I am assisted by my husband.If I did not use the crutches I would be off balance.I am stuck in the house all day long and really do miss the shorts walk I use to take along the seafront.Now I find it very difficult to co-ordinate my legs and they are very weak.
It is good to know that there are others out there with similiar medical complaints.
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Comment by Jenn on June 19, 2009 at 3:49pm
- HEY guys!! deadline has passed. Thanks to all who emailed in about the dopa-responsive news story.. It sounds like it will be a good one :P I'll post the link when its ready !!
© 2009 Created by Marie
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