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 faith on June 17, 2009 at 10:22pm -
Beka,
The poetry you posted is trully precious
you are an angel
thank you
faith
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Comment by beka on May 6, 2009 at 6:48pm -
For ALL :
Butterfly Girl” by Jaylene Johnson:
“Do you only remember the way you used to be
Full of fear and doubt and insecurity
Taking things that people said to build a web around you
Thinking you’d be safe in that place
I know you’re frightened and your wings are frail
But summer’s here and you’ve outgrown your silky veil
The walls of your cocoon have left no room for breathing
So break free
Break free
Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl
Don’t you know (that) you’re a precious miracle
Suffering transformed to something wonderful
All the things that had you bound have only made you stronger
So trust me and fly
Trust me and fly
Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl
Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl
Don’t you know you’re beautiful
You’re beautiful
Don’t you know you’re beautiful”
From the album, “Finding Beautiful”
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Comment by beka on May 6, 2009 at 2:05pm
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"Man is composed primarily of water and as water, flows towards the path of least resistance". I, on the other end, think l am made of not only water but of fire and backbone, and I do not always follow the path of least resistance. Sometimes I discover new ground, sometimes I stand my ground and sometimes I hit the ground.................................and run with it.
Quote by ???
beka
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Comment by beka on April 29, 2009 at 3:36pm
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Phernergan has bad side effects, it can also augment your dystonia.. Zofran is much better without many side effects...
beka
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Comment by BDrake on April 29, 2009 at 2:02pm - More TV awareness this time w/ an interview by Montel on the tv talk show called The Doctors. It airs tomorrow check local listing for the time in your area http://www.thedoctorstv.com/
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Comment by Imove on April 28, 2009 at 7:56pm -
Carol, I can't answer why your dr would prescribe Phenergan and yet the ER gave you Zofran. Both are for nausea. Sometimes one or the other is prescribed for migraine sufferers, to help with the nausea that sometimes goes with migraines. Also, Phenergan and Zofran can 'potentiate' other medications, meaning that Phenergan and Zofran can increase the effect of other meds, so either one could be prescribed to help migraine meds work. Your dr said Zofran really isn't for migraines, because it won't actually help with migraine pain. But it can help with migraine nausea, and it can also help other migraine meds work better. Make sense? Let me know if it doesn't.
~Connie~
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Comment by Lene on April 28, 2009 at 7:41pm -
Hi
I just heard on an Oprah Show today who was featuring Dr. OZ about flesh eating bacteria uck!! that he is getting his own show in September (mid). Isn't that something!! I am sure he will be speaking about Dystonia at one point. I am excited. Lene
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Comment by Carol on April 28, 2009 at 7:28pm
- Why would my Doctor prescribe phenergan when she knows about my compazine dystonia?!? The pharmacist called to warn me that it can happen with phenergan, too. That's why the ER had given me zofran in the past, but Dr said zofran really isn't for migraine. Bah.
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Comment by beka on April 25, 2009 at 11:56pm
- Welcome to new members - and old !! Consider writing a Dear Dystonia Letter. A publisher might consider it as a tool for new and old...Help bring out dystonia as it is for all of you. It varies in many and sometimes vaires according to the day...beka
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Comment by Lori on April 25, 2009 at 8:39pm - Hello I am new to this website and bloging. Right now I am sitting her with a terrible headache which I have been getting for the last 2 weeks. In 1996 I have spasmatic torticollis and received about 4 treatments of boxtox. In 1997 my syptoms started to subside. Now in the last few months my neck as been jerking violently to the right. I fear the torticollis is returning. I feel pain and embarressment. I never know then the jerking will happen and I think it is time to see a neurologist but haven't yet made the appointment. I watched to Oprah show the other day with Rogers on it and realized there is a lot more info out there now then in 1996. Just needing to talk to others with others who can understand. Thanks.
© 2009 Created by Marie
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