Hello Beka:
I just wondered if you have had botox lately. Hoarness, swallowing and weekness can be a cause of what you are going through from that.It sure can be scary when you swallow and it goes down the wrong way. I've had some experience with...
November 24
http://www.american dystonia society.org
Everyone who has dystonia should join this org. Great things will be happening for all of us.
Hello Browneyes27:
I am glad you have getting the MRI done and are now ready to move forward as things are planned.
Lots of love and best wishes, Sisdailey
Hello Rebekah:
I wanted to let you know I read your magazine and thought it was very well done. It was very interesting and you did an outstanding job.
Thank you, Sisdailey
Sorry guys, I did not intend to have a pity party for myself. Like I said, maybe I was just having a tough couple of days and getting sensitive (a couple of my questions from previous went unanswered, and I guess it bothered me a little). Not impo...
onmom; There are support groups in Ontario if you have not tried one of these maybe they will feel a need, I help run the one in Hamilton so if you are interested in sitting in on one of the meetings and meeting others with this disorder you are w...
onmom..sometimes coming to a new place where is so much going on and so many people it can feel a little overwheming..but if you have something you want to talk about..or an answer to something there is always someone who will be happy to talk to ...
Now, why are you having a hard time fitting in ? There is plenty of information on this Forum. Nor are you alone. There always is someone here to help you along, move you along, guide you, support you and Love you. Just as you are.
beka
I was hoping for the same thing, to share with, and ask questions of, those who have something in common with myself. Maybe I'm just having a hard few days, but it really seems hard to fit in. So, I guess my reason for coming to this site it just ...
Our new foundation, American Dystonia Society, plans to address patient loneliness. I know how it feels to feel alone when I was diagnosed. I am drafting an organizational plan to have a peer-to-peer or patient-to-patient mentoring program so no o...
dystonia friendship sharingdystonia friendship sharingThanks Karen for helping me answer this question.
The internet and this wonderful place have been such a blessing to me and i'm sure everyone else that is here..it has brought all of us "lost ...
November 9
I come here to learn and share infromation about dystonia. I am a dystonia patient with cervical dystonia.
I first watched Alex she was on the Doctors show it was all about getting out there in the world and not being afraid of peoples reactions to her movements. I just watched what was shown resently care of Beka posting the sites, it's to bad they ha...
I received this from the San Diego DMRF Support Group- unfortunately they will not publicly provide Alex's contact information.
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Hi All!
For those of you who missed seeing ALEX on “The Doctors” yesterday (10/14), she wa...
In the online health communities I participate in, I'm:
not really sure where I fit yet
More about me (my health interests and reasons for joining WEGO Health)
I've had cervical dystonia since 1992. Take botox A and valium. Since I have been taking botox since 1994 it does not help like it did at first but it still helps with the pain. My balance is also effected by it and I have developed tremors of the head with in the last 2 years. I am still hoping for a cure for this disorder.
My twin grand children Anita and Juanita very close to my heart.
Comment Wall (22 comments)
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At 12:16pm on September 14, 2009, TWISTEDJAM said…
Hello Sis ...
Thank you so very much for your concern ...
it hasn't been easy knowing that my mom's days are @ a end.
Our family has been dealt a very hard blow.
The world has changed for us ... it's not the same!
I dread the days that are coming.
I've been trying to find that poem that you've mentioned pertaining to "Time" ...
can't seem to locate it.
Hi Sis ... It's been awhile since I last wrote to you on here !
I do hope you are doing well !
I just found out my mother has Cancer ( Pancreatic ).
She has been given 4-6mths.
I've read what you have gone through with your family.
I just had to write to you !
I do recall the last time we touched base it pertained to talking with my mom "cause one day she may not be here for me"... by some strange way I really think @ times God talks through us all ! ! !
Thanks so much for commenting on my blog ...
glad you liked it.
I was whacking my brains trying to come as close as I could possibly get to depicting how Dystonia feels.
Maybe my next venture will even come closer ... who knows ?
Sent this to the Dystonia Foundation here in Canada ...
as I would like their opinion on it.
Hi sis..I would like to chat with you about your tremors and what they are doing for that along with you CD. I have the same trouble. I need your e-mail or tell me how to e-mail you. Lene