Sis's Page
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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 ...
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...
Hi Sis - has the wound healed yet for you ??
beka
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...
Here is a link to an interview she gave that I assume was more recent because of the difference in her symptoms.
http://www.kusi.com/news/goodmorning/62205397.html?video=YHI&t=a
For those of you who did not see Alex the first time she was on The ...
Profile Information
- 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)
- 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.
Hope you are doing well !
God Bless
- At 10:01pm on September 1, 2009,
TWISTEDJAM said…
- 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 ! ! !
God bless
Grace
- At 8:00pm on May 26, 2009,
poetslady2 said… - Hi Sis, I can stand more strighter than before. I have 2 heraring aides. Now, I can hear myself talk.
It sure is good hearing from you.
Mary
- At 12:04am on January 26, 2009,
TWISTEDJAM said…
- Hi Sis !
Hope you are doing well !
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.
I love ya too !
God bless/take care
Grace
- At 4:35pm on January 3, 2009,
TWISTEDJAM said…
- Thanks for stopping by Sis !
So very true !
One of those small words that packs such a strong meaning ...
priceless too !
Glad you enjoyed !
God bless
Grace ( twisting in Toronto Canada )
- At 6:12pm on December 20, 2008,
Lene said… - Sis,
I love instant chat. Would you happen to have yahoo? I think I have windows I just don't use it... But I can set it up...Lene
- At 6:06pm on December 20, 2008,
marie said…
- thanks,ireally need help-marie
- At 6:04pm on December 20, 2008,
marie said…
- thakyou-hope for answers too-lovemarie
- At 5:50pm on December 20, 2008,
Lene said…
- 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
- At 12:32pm on December 19, 2008,
TWISTEDJAM said…
- Hi there Sis !
It's been some time since I was last on here ...
it's always good to be amongst friends who share an open hearted understanding for one another !
I hope you are well !
We are having a very severe snow storm right now in Toronto ...
Canada.
I'm going through mine as well ... botox wearing off slowly ...
was told I have to wait until January 16TH for my next injections !
I'm grateful to God ... it could be worse !
Thinking of you Sis and wishing you a "Very Jolly Christmas" !
And God's comfort and blessings in the new year for you and your family!
Take good care !
Peace
Grace
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