Sisdailey's Friends

sisdailey's Groups

sisdailey replied to the discussion The ethics of offering cancer patients untested drugs Oct 11

sisdailey replied to the discussion Self breast exams on the out?? Oct 11

sisdailey started a discussion called Sharing with you the way Cancer has touched my life in CancerOct 9

sisdailey replied to the discussion Caffiene and Dystonia - A relationship in Onset of acute symptoms ? Sep 27

sisdailey replied to the discussion Falls and Dystonia Sep 26

sisdailey replied to the discussion Finalizing the Definition of Dystonia Sep 24

sisdailey replied to the discussion Finalizing the Definition of Dystonia Sep 23

sisdailey replied to the discussion ReDefining Dystonia Medical Terms- How ? Sep 20

About me: 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.

Nonprofit or other organization 1 I recommend: The Dystonia Medical Research Foundation

At 9:35pm on August 14th, 2008, English said…: Thank you for the e-mails you send me on a regular basis Sis they are very inspirational and lighten up my day. Gosh I think it has been 8 years since we have known each other and now I finally see you. That has really made my day. At the moment I am going thru a rough time.....my hubby retired from the Navy after 26 years of service and has now been dx'd with PD, just doesnt seem right, but that life I guess. God keep you safe....Jennie *English

At 12:33am on July 28th, 2008, GGMel said…: Hi Sis:
Thanks for your get well wishes. I have started on a new anti-inflammatory medication, and it seems to be working, so far. See my doctor on Wed. of this next week. I never realized bursitis was so painful. I shouldn't complain, as I am very healthy except for my Dystonia. Thanks for your support, my friend:)

At 4:37pm on July 27th, 2008, Libertysnanners said…: Hello Sis,

I am still trying to figure out this sight. I had left a comment not sure where.lol. Thank you for all the emails you have sent me they have been such an inspiration for me.

I am glad i found this site.

Hugs
Karen

At 6:38pm on July 16th, 2008, AnitaM said…: Hey sis!

Thanks and great to hear from you!

At 1:40pm on July 14th, 2008, Paula said…: Hi Sis,

Thank you for commenting on my wall. Like you I have lost many family members to cancer (various different types). My mother died 2 years ago at the young age of 54 to small cell lung cancer. I'm sorry cancer has touched both of our families. I am also a member of the cancer board at WEGO Health. We would love for you to join us. Take care and I look forward to hearing more about you :)

At 8:53pm on July 10th, 2008, GGMel said…: Hi Sis: Look forward to seeing you on here, and once I find my way around, I'll interact with other people and learn more about our disorder and if anything is promised to us for a better future. I know they are working on this all the time, but Dystonia can be so debilitating to some, and that is a very sad thing to happen and see it happen to the ones you love. Have a great weekend, my friend.

Hugs,
mel

At 1:27am on July 10th, 2008, GGMel said…: Hi Sis: I think we know each other, as we have exchanged many emails and jokes on AOL. I finally joined WEGO Health today, but don't know where to go or what to do with this. Guess I'll feel my way around. So glad we have a Dystonia group that seems to be very active and I'm happy to be here. I think this group will definitely be a "go." Hope you are doing well:)

Hugs my friend,
Mel

At 3:37pm on June 21st, 2008, toots said…: Hi Sisdailey, nice to get your message. I halve had Dystonia for olver 25 years with no diagnosis and more and more pain. Of course recieving the wrong medicines that made it much worsed. But finally a neurologist from Erie,Pa. took a video of me to a conferance with him and c ame back with Torticollis and Meige Syndrome or Chorea. But my Chorea was not getting any better with meds given. It was guessed that I may have Wilson's Diease a couple of times but bloodwork showed not. Thank God. And I do. I too have a freind with Blep and cervical dystonia. I have a freind in Pa. with dysphonia. I sure do love having freinds who can understand what I'm talking about having Dystonia.

At 2:49pm on June 20th, 2008, sisdailey said…: Hello toots: It is so nice to meet you. Sorry to hear you have the combination of CD and meige. It took me 2 years to get a correct diagnoses and then was sent for botox. I have a friend who has the same you do. She also has Blep and dysphonia. She gets botox for all 4 things. She is such an inspiration to me. She does not let it control her life at all. I sure am glad you found the right doctor that is familiar with what you have and can administer the botox in the right way so you can get some relief. I hope we can stay in touch. Nothing helps more then a friend to talk about how dystonia displays its self in our lives. SisDailey