Welcome to C4Ds’ Online Forum !
Welcome to C4Ds’ Online 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 WEGOHealth to offer this online Forum.
My goal in creating this forum is to allow an open, uncensored but moderated BB that covers various topics pertaining to Dystonia, diagnosis, treatments and especially the aspects of care, education, and awareness of dystonia.
I hope you will join me, along with WEGOHealth, in participating in this new dynamic Forum that is meant to serve you, the patient, friend, colleague, survivor of dystonia.
Help Set the PACE : Patient care, Awareness, Collaboration, and Education.
Dedication of this Forum :
This Forum I am dedicating to the following people :
Russ Badger
Richard Duggan
Deb Holton, Esq.
who helped me, personally, set the precedence and move forward with dystonia and Care4Dystonia, Inc. by telling me to “ JUST DO IT ! “.
beka
Response from adriennewegohealth
Welcome to C4Ds’ Online Forum !
Beka, I wanted to welcome you and your community to WEGO Health. I really admire your organization and your mission. Please let us know what else we can do to help.
Welcome!!
Signature
Adrienne Lavidor-Berman
WEGO Health Community Director
adriennelb@wegohealth.com
Response from Ellen
Welcome to Beka and Care4Dystonia!
I’m so glad that Beka has brought Care4Dystonia to this forum, and we’re so excited to be working with her. From the very first Day I joined WEGO Health I had hoped that Dystonia would be given a place here, and I am just thrilled that we can join with Beka and Care4Dystonia to help get the word out about Dystonia as well as support and educate those with that diagnosis and anyone else interested in learning about this disorder.
Beka and I have had the occasion to write back and forth for a while now, and she was kind enough to ask to use some of the things I’ve written on other boards for inclusion in the C4D newsletter. On more than one occasion she has mentioned to me the need for a sort of ‘clearinghouse’ where information and support can be given in a non-proprietary manner for the benefit of Dystonia as a whole. I hope that this forum can help her make that happen, because I know that the most important thing to us all, is helping everyone diagnosed with this condition in whatever way that we can. For each person that may mean something different and where alone we may feel powerless, I think we can all agree that there is strength when we all join together.
Welcome C4D and all visitors, and please join in anywhere that you can!
“Success is a little like wrestling a gorilla. You do not quit when you’re tired -You quit when the gorilla is tired.” -Robert Strauss
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from bekac4d
Ellen -
I’m not so sure I want to wrestle with a gorilla. Dystonia feels like a gorilla at times…
Please post your thoughts, threads of what topics you want this Forum to cover. Join in Today.
beka
Response from Ellen
Beka,
You’re right, Dystonia is very much like a gorilla! The thing is, I am so much more than my Dystonia. It can try to wreck my body, but I will not let it destroy my soul.
It is a constant battle. It wearies me. It frustrates me. It depresses me. It enrages me. It does many things. The one thing I refuse to let it do to me is beat me.
I will NOT let it beat me!
So, I keep on fighting as long as that gorilla is fighting. I will succeed in this life despite what that gorilla does to me. I will succeed because, in fighting the gorilla I am saving not only myself, but my children, and I am more than a mother. I am a Lioness. I will protect my children even to give up my life for them.
Yes, the gorilla fights me, but I will not give up. I will win…
“Success is a little like wrestling a gorilla. You do not quit when you’re tired -You quit when the gorilla is tired.” -Robert Strauss
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from Susy
Hi Ellen and Beka,
I just finished posting something, but I had to respond here as well. I know Ellen from another group we belong to, which is where I first learned about dystonia and realized that I finally had a name for what I’d been experiencing most of my life. That in itself was a tremendous help.
I was wondering what medications, if any, either of you might be taking to address your spasms? As I mentioned in my other post, I am currently taking 300 mg of Neurontin 4X daily, and it’s helped significantly. The spasms still occur, but not with the frequency and ferocity they had before. I must now deal with blurry vision and more mental fog, but I’m willing to make the trade. I’ve had poor vision most of my life anyway, and at least that isn’t painful, aside from the dry eyes, that is!
Thank you both for setting up this forum. I plan to keep an eye on it to see what kinds of input you receive.
Signature
Susy
Response from Ellen
Susy,
I’ve just started a thread asking which medication you find helpful for all of your dystonia symptoms. I encourage everyone to join in! This is a huge issue for most of us, and you might really be able to help someone else there…
You can find the thread HERE
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from Jen
Hi all,
Thanks for starting this forum. I always find it helpful to talk to others dealing with dystonia and chronic illness. I have had generalized tardive dystonia for over 12 years now. I also have severe gestroparesis and small bowel dysmotility and currently can not eat.
You can read more about me and contact me from my blogs:
http://neuronswithdystonia.blogspot.com
http://www.caringbridge.org/visit/jenelle
I hope dystonia isn’t treating you all too badly. Thanks again for starting this forum and I am looking forward to participating.
Hang in there and know that you are not alone.
Peace,
Jen
Response from Ellen
Hi Jen!
I met you a while back on the DREAMS board.
You don’t know it but you have been an inspiration to many people. There are many times I have referred people to your pages and your well-written story so that they can get a better understanding of Tardive Dystonia and Dyskinesia. There is so much misinformation out there. Your story really illustrates and puts a face on this condition.
Migraineurs often are given medications that can cause a tardive reaction, especially in an emergency room situation. When they tell me about reactions I send them to your page and explain to them what may be happening. They are of course told that they are not schizophrenics on meds for years so they won’t have a reaction to them “just this once”. Your story shows them this is not the case.
Jen, I really would encourage you to share your story here so that visitors from other boards, and those not otherwise familiar with Tardive Dystonia can learn what it is like to live with this disorder. We do have a board for mental disorders and Schizophrenia in which there are viewers who do take these medications. I think that you could help them as well.
Thanks for posting here, Jen. It’s good to “hear” from you again.
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
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 WEGOHealth to offer this online Forum.
My goal in creating this forum is to allow an open, uncensored but moderated BB that covers various topics pertaining to Dystonia, diagnosis, treatments and especially the aspects of care, education, and awareness of dystonia.
I hope you will join me, along with WEGOHealth, in participating in this new dynamic Forum that is meant to serve you, the patient, friend, colleague, survivor of dystonia.
Help Set the PACE : Patient care, Awareness, Collaboration, and Education.
Dedication of this Forum :
This Forum I am dedicating to the following people :
Russ Badger
Richard Duggan
Deb Holton, Esq.
who helped me, personally, set the precedence and move forward with dystonia and Care4Dystonia, Inc. by telling me to “ JUST DO IT ! “.
beka
Response from adriennewegohealth
Welcome to C4Ds’ Online Forum !
Beka, I wanted to welcome you and your community to WEGO Health. I really admire your organization and your mission. Please let us know what else we can do to help.
Welcome!!
Signature
Adrienne Lavidor-Berman
WEGO Health Community Director
adriennelb@wegohealth.com
Response from Ellen
Welcome to Beka and Care4Dystonia!
I’m so glad that Beka has brought Care4Dystonia to this forum, and we’re so excited to be working with her. From the very first Day I joined WEGO Health I had hoped that Dystonia would be given a place here, and I am just thrilled that we can join with Beka and Care4Dystonia to help get the word out about Dystonia as well as support and educate those with that diagnosis and anyone else interested in learning about this disorder.
Beka and I have had the occasion to write back and forth for a while now, and she was kind enough to ask to use some of the things I’ve written on other boards for inclusion in the C4D newsletter. On more than one occasion she has mentioned to me the need for a sort of ‘clearinghouse’ where information and support can be given in a non-proprietary manner for the benefit of Dystonia as a whole. I hope that this forum can help her make that happen, because I know that the most important thing to us all, is helping everyone diagnosed with this condition in whatever way that we can. For each person that may mean something different and where alone we may feel powerless, I think we can all agree that there is strength when we all join together.
Welcome C4D and all visitors, and please join in anywhere that you can!
“Success is a little like wrestling a gorilla. You do not quit when you’re tired -You quit when the gorilla is tired.” -Robert Strauss
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from bekac4d
Ellen -
I’m not so sure I want to wrestle with a gorilla. Dystonia feels like a gorilla at times…
Please post your thoughts, threads of what topics you want this Forum to cover. Join in Today.
beka
Response from Ellen
Beka,
You’re right, Dystonia is very much like a gorilla! The thing is, I am so much more than my Dystonia. It can try to wreck my body, but I will not let it destroy my soul.
It is a constant battle. It wearies me. It frustrates me. It depresses me. It enrages me. It does many things. The one thing I refuse to let it do to me is beat me.
I will NOT let it beat me!
So, I keep on fighting as long as that gorilla is fighting. I will succeed in this life despite what that gorilla does to me. I will succeed because, in fighting the gorilla I am saving not only myself, but my children, and I am more than a mother. I am a Lioness. I will protect my children even to give up my life for them.
Yes, the gorilla fights me, but I will not give up. I will win…
“Success is a little like wrestling a gorilla. You do not quit when you’re tired -You quit when the gorilla is tired.” -Robert Strauss
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from Susy
Hi Ellen and Beka,
I just finished posting something, but I had to respond here as well. I know Ellen from another group we belong to, which is where I first learned about dystonia and realized that I finally had a name for what I’d been experiencing most of my life. That in itself was a tremendous help.
I was wondering what medications, if any, either of you might be taking to address your spasms? As I mentioned in my other post, I am currently taking 300 mg of Neurontin 4X daily, and it’s helped significantly. The spasms still occur, but not with the frequency and ferocity they had before. I must now deal with blurry vision and more mental fog, but I’m willing to make the trade. I’ve had poor vision most of my life anyway, and at least that isn’t painful, aside from the dry eyes, that is!
Thank you both for setting up this forum. I plan to keep an eye on it to see what kinds of input you receive.
Signature
Susy
Response from Ellen
Susy,
I’ve just started a thread asking which medication you find helpful for all of your dystonia symptoms. I encourage everyone to join in! This is a huge issue for most of us, and you might really be able to help someone else there…
You can find the thread HERE
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Response from Jen
Hi all,
Thanks for starting this forum. I always find it helpful to talk to others dealing with dystonia and chronic illness. I have had generalized tardive dystonia for over 12 years now. I also have severe gestroparesis and small bowel dysmotility and currently can not eat.
You can read more about me and contact me from my blogs:
http://neuronswithdystonia.blogspot.com
http://www.caringbridge.org/visit/jenelle
I hope dystonia isn’t treating you all too badly. Thanks again for starting this forum and I am looking forward to participating.
Hang in there and know that you are not alone.
Peace,
Jen
Response from Ellen
Hi Jen!
I met you a while back on the DREAMS board.
You don’t know it but you have been an inspiration to many people. There are many times I have referred people to your pages and your well-written story so that they can get a better understanding of Tardive Dystonia and Dyskinesia. There is so much misinformation out there. Your story really illustrates and puts a face on this condition.
Migraineurs often are given medications that can cause a tardive reaction, especially in an emergency room situation. When they tell me about reactions I send them to your page and explain to them what may be happening. They are of course told that they are not schizophrenics on meds for years so they won’t have a reaction to them “just this once”. Your story shows them this is not the case.
Jen, I really would encourage you to share your story here so that visitors from other boards, and those not otherwise familiar with Tardive Dystonia can learn what it is like to live with this disorder. We do have a board for mental disorders and Schizophrenia in which there are viewers who do take these medications. I think that you could help them as well.
Thanks for posting here, Jen. It’s good to “hear” from you again.
Signature
Ellen Schnakenberg
WEGO Health Community Moderator
Headache and Migraine
Replies to This Discussion
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Permalink Reply by beka on -
Welcome to New Users of this Forum :
The intent of this Forum is to give you new information and education as well as allowing you to share your own questions, theories, thoughts, suggestions about various forms of dystonia. I encourage all of you to join this one of a kind new Forum. There are two great moderators for this Forum- Ellen , who has a wealth of knowledge and myself ( Count me out as great ! ). Please let us know if you would like to be a moderator.
beka
www.care4dystonia.org
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Permalink Reply by beka on
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To New Members - Welcome.
Please be aware that this Forum began back in March 2008. Many of the posts contain many informational, good reading multiple threads before the Forum underwent software changes.
Beka
© 2009 Created by Marie
