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: 17 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
Got " Dystonia Fatigue " ? Are you experiencing it ? 3 Replies
Started by beka. Last reply by beka 17 hours ago.
HAS ANYONE TRIED THIS? "Psychogenic" frustration 12 Replies
Started by Elaine. Last reply by Rebekah Dec 2.
Feeling Like Barbed wire ? NEW PAIN NEWS here ! 1 Reply
Started by beka. Last reply by beka Dec 1.
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 beka on October 9, 2009 at 11:40am -
The first issue of Dystonia Living Magazine has been published. The magazine focuses on practical tips for living and is written by and for people with Dystonia.
You can find it here: http://www.dystomag.com
Great Job- Rebekah !
beka
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Comment by Mo on October 9, 2009 at 12:08am - LENE.. I TOOK XANAX IN PAST. IT WAS NO WHERE NEAR AS BAD AS KLONOPIN. 4-5 DAYS WITHDRAWAL WITH XANAX, 7 MONTHS OF HELL ON KLONOPIN. I AMY GO BACK ON IT, DEPENDING WHAT DR. YOUNG SAYS. I DONT LIKE BENZOS THO. CATCH 22 CATCH 22 CATCH 22
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Comment by Lene on October 8, 2009 at 8:24pm - MO, The only thing!!!!!!!!!!!!!!! that stops my head from trembling is Xanax. I take it if I really cannot handle the shaking any longer....sometimes I wanna just scream!! however the Xanax with relax the head. Just have to be careful cause it is addicting and must be handled with kid gloves. Its really a wonderful med for that. I am on a low dosage. I take primidone for my hands..is a barbituate, however I can write again and do finer things now....
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Comment by Mo on October 6, 2009 at 6:29pm
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beka... it has been far to long and far to long of banging my head not getting anywhere with the local neuro specialists. ty tho. i hate living like this and with this. they dont even have meds design for et, if i have that, but do for dystonia, two they tried did not work and they are pd meds... nothing stops my head from shaking badly cept alcohol and i already been down that road and dont want to abuse it like past...
this is the one area of medicine where i feel they truly havent a handle or many dont have a clue, neurology, with the exception of pd because so many years and resources goes into the research, awareness and dedication of it.
i am just beyond through with this...
mo
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Comment by beka on October 6, 2009 at 5:55pm
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It's been a long struggle for you - Mo. I wish I could find a cure for all movement disorders for everyone and had the answers for all of you. Sighhh...
beka
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Comment by Mo on October 2, 2009 at 8:48pm
- no not nervous. but am hoping my diagnosis is essential tremor. otherwise both options are not on the table. i want this to stop.
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Comment by beka on October 2, 2009 at 8:17pm
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Thanks Mo...Are you nervous ?
Beka
Still at work with a patient climbing out of bed ..Yikes..
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Comment by Mo on October 2, 2009 at 8:16pm
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Gamma Knife video links....
http://nwhgammaknife.org/gamma/videos/Movement_Disorders_300kbs.asf
http://www.losrobleshospital.com/CustomPage.asp?guidCustomContentID=%7B5F51336C-F4DE-4EC1-AE4D-6B276D23F78F%7D
One focuses on movement issues and the other is an overview of all ailments that are treated with gamma knife.
Mo
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Comment by beka on October 2, 2009 at 8:03pm
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Congrats to Lindsay for bringing AWARENESS via the Boston Globe.
Link : http://www.boston.com/yourtown/news/hingham/2009/10/therapy_for_better_movement_in.html
beka ( Stll at work...11 more hours to go..)
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Comment by beka on October 2, 2009 at 8:01pm
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Mo - Good Luck with your appointment with Dr. Young. I do hope it comes with some answers for for you. 26 years is a long time. Please do place links of the videos for all to see on this Wall. And keep us up to date. YOU have not been forgotten. If you are on the sidelines, please consider adding your ideas to peoples' concerns. GET INVOLVED and Support will be returned ten-fold to you by the group.
Beka ( at Work...)
© 2009 Created by Marie
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