You are beautiful, and a brave woman.l this video has touched me. I wish you all the best in your life and anyone who judges or leaves rude comments are so insignificant in their ignorance that they should be acknowledge in no way other than laughing at them..
The videos are all very graphic. but the videos there should not be entertainment from afar. I lived with this for 20 years and then starting taking 750 mg magseium, B complex and calcium and my dystonia which was as bad as theirs is in remission.
I just learned of dystonia and I'm so sorry any human would get it. It takes a brave person to post what you have posted and i respect you for that. Good luck to you.
thank you i have been suffering from this for years but no support from doctors that make me feel like im mad, i never realised this is whats affecting my memory too
Thank you for posting such a beautiful creative video and the encouragement of your comments at the end. They were really moving. I have had dystonia for over15 years so can really relate. My friend is with me and I showed her your video and it helped her understand..I have found Alexander Technique helped me a lot!
I have it too and just found out about atlas orthogonal chiropractic - they move the top vertabrae back into place - check it out! It's the cure for most.
I get this, in me it feels like a compulsion some of the time as well as involuntary at other points. It doesn't happen all the time, just at certain times, certain situations, I only found out that it might be Dystonia today.
Thankyou very much for your video. Very helpful, as we have it it our family too. It always is comforting to understand we are not all alone with what we endure. I will watch for you again!
Brave woman, I came across your video because the muscles on my arms contract , this is the second time actually. I had this on my left arm tricep for almost 2 hours yesterday, did they ever start on your arms?
I feel your're agony and frustrations. After years of being in denail mode, i finally found out that I have dystonia in my neck and scoliosis in my back. Lets just say that it not healthy for my dating life.
I feel you agongy and pain, after years living in denail, I finally found out that I have mild scrolisis in spine and dystone in my neck. Lets just say that it hasn't been fun for my dating life.
You have great courage to put this on here =) wel done .. and to them jerks who cant keep their horrible opininons to there self .. well your just not nice =) .. my mouth does that pulling dwn thing when i yawn
FINALLY! I figured out how to delete all the mean and idiotic comments. Thank you out there the ones of you who put them in their place. I wish i had a life to sit at the computer and do stupid stuff like what they did. idiots. Thankfully I cleaned the comments up:)
cont.. And it is a less risky surgery, like a tiny step. so it has lessened the spasms and the pain but i am noticing i am needing the dose turned up sooner and sooner so i only hope i will hit the right dose and dystonia will calm back down. for awhile i had no storms and forgot for awhile. but now dystonia visits everyday so i am hoping, like i said, i can get the pump to control it.
DBS was the treatment option given to me- and really the only one except just using meds to treat symptoms and botox. I found out about the baclofen pump and since i was dealing with a pain level i could no longer tolerate i decided if the pump slowed my invol. movement maybe the pain over time would lessen.
everyone needs to remember that dealing with the ignorance is part of the cross that is dystonia. your brave for posting these, ShakyAmy. Please let me know if there's anything I can do to help in your fight. God bless.
I was 30,single,going out doing everything you do.Suddenly everything was gone.either in a scooter or wheelchair-suddenly have to ASK for help-ASK for rides when I have a car.Your life can change no matter how much u think u control it.Everyday is different for me. Work is 10 times harder.Walking is 20% because i have a machine in my abdomen and spine which scrambles the signals that made me twitch but ALSO scramble good signals how to walk/how to drive/hold things.if u r a jerk don't post.:)
Seriously- Some of these comments remind me why I keep fighting. I tell anyone I can about dystonia. I may be having a bad day and kids look at me thinking what's wrong with her she's not 80? The ignorant comments on here- you guys just think for a minute. I never was sick. I never broke a bone, had a cavity,or had been to the hospital. In ONE DAY i lost the ability to walk and as dystonia took over my right side I would not be able to breath-or talk-or read-or go out.
I applaud your courage for videotaping and uploading this to the internet. I also suffer from CD and yes, it's a heinous disorder and sometimes the pain makes me so frantic I can't think properly.
I was interested to read your ending "credits" when you said you experience memory loss. Is that common for CD? I also have issues with my STM, but thought it was due to my medication.
We survivors of Cervical Dystonia are among the strongest people anywhere, ever. ^.^
Sorry to hear about your pain.You might look into Rolfing to work on your problem.I say some people get relief by getting their psoas worked out in Rolfing you may want to dod a google search with Rolfing with your condition in the tittle search.
Amy, I too suffer from cervical dystonia. It sucks. I too have had to lean against my chair to stop spasms. Then I started receiving botox injections. I am so much better. I go to Michael Hayes at St. Elizabeth's Hospital in Boston. In my book he's a genius. I hope you find your way to greater healing. God bless.
get well soon Amy I saw your surgery or heard about it... take it easy let your body and soul heal :)
oddsource 10 months ago
You are beautiful, and a brave woman.l this video has touched me. I wish you all the best in your life and anyone who judges or leaves rude comments are so insignificant in their ignorance that they should be acknowledge in no way other than laughing at them..
Serenades420 1 year ago
youre really pretty! :)
Paraprincess1001 1 year ago
The videos are all very graphic. but the videos there should not be entertainment from afar. I lived with this for 20 years and then starting taking 750 mg magseium, B complex and calcium and my dystonia which was as bad as theirs is in remission.
catsalive1 2 years ago
I'm honestly curious not trying to be an asshole, how'd you get tattos
archsage82 2 years ago 10
I had them before I got Dystonia.
ShakeyAmy 2 years ago
I thought you are born with Dystonia. And oh Thats good. 8D
archsage82 2 years ago
very nice video i wish u all the best
kylecorreia 2 years ago 3
I just learned of dystonia and I'm so sorry any human would get it. It takes a brave person to post what you have posted and i respect you for that. Good luck to you.
PIRTEKM3 2 years ago 3
thanks you soo much for posting this
UrbanInkpen 2 years ago
I love this video. I have cervical dystonia, just the neck goes off, but I know what 24/7 is like :-)
I didn't realise it affected memory... Are we all sure of that ?? I thought I just had early Alzheimers on top of dystonia!
julesdownunder 2 years ago
thank you i have been suffering from this for years but no support from doctors that make me feel like im mad, i never realised this is whats affecting my memory too
flirtyraver 2 years ago 11
Thank you for posting such a beautiful creative video and the encouragement of your comments at the end. They were really moving. I have had dystonia for over15 years so can really relate. My friend is with me and I showed her your video and it helped her understand..I have found Alexander Technique helped me a lot!
Theodoxia 2 years ago 4
I have it too and just found out about atlas orthogonal chiropractic - they move the top vertabrae back into place - check it out! It's the cure for most.
lcdc1223 2 years ago
I get this, in me it feels like a compulsion some of the time as well as involuntary at other points. It doesn't happen all the time, just at certain times, certain situations, I only found out that it might be Dystonia today.
jakobtungelund 2 years ago
Are the movements in your neck completely involuntary or are they more like a compulsion? All the best x
jakobtungelund 2 years ago
Thankyou very much for your video. Very helpful, as we have it it our family too. It always is comforting to understand we are not all alone with what we endure. I will watch for you again!
suburbansusie8 2 years ago
You're beautiful.
PandaaaaBearr 2 years ago
Brave woman, I came across your video because the muscles on my arms contract , this is the second time actually. I had this on my left arm tricep for almost 2 hours yesterday, did they ever start on your arms?
sethiroph08 2 years ago
id hate to ask a stoopid question or whatever but ... does it hurt ??
cjacquot2 2 years ago
I think you rock... You are so brave to let people into your life and diease like that... PS that song is great checking for it on itunes now...
Good luck
Pay not mind to the Haters
kirkbern 2 years ago 2
I feel your're agony and frustrations. After years of being in denail mode, i finally found out that I have dystonia in my neck and scoliosis in my back. Lets just say that it not healthy for my dating life.
WilliamVG 2 years ago
I feel you agongy and pain, after years living in denail, I finally found out that I have mild scrolisis in spine and dystone in my neck. Lets just say that it hasn't been fun for my dating life.
WilliamVG 2 years ago
I feel the agony, after years of denial, I realize now that I have mild Dystonia on my neck and Scolisis.
WilliamVG 2 years ago
You have great courage to put this on here =) wel done .. and to them jerks who cant keep their horrible opininons to there self .. well your just not nice =) .. my mouth does that pulling dwn thing when i yawn
xoChloeeox 2 years ago
is dystonia and tardive dyskonesia the same thing or are they slightly different.
i dont know if the medication i take is for dystonia or t.d. its called procyclidine...anybody know?
wikidanbad 2 years ago
Hi Dearest Amy
Im Nene I too suffer from this dreadful
Disorder please feel free to share your pain for i need sharging as well...
your friend
NeneLindo
NeneLindo13 2 years ago
FINALLY! I figured out how to delete all the mean and idiotic comments. Thank you out there the ones of you who put them in their place. I wish i had a life to sit at the computer and do stupid stuff like what they did. idiots. Thankfully I cleaned the comments up:)
Hope everyone is doing well
ShakeyAmy 3 years ago 3
cont.. And it is a less risky surgery, like a tiny step. so it has lessened the spasms and the pain but i am noticing i am needing the dose turned up sooner and sooner so i only hope i will hit the right dose and dystonia will calm back down. for awhile i had no storms and forgot for awhile. but now dystonia visits everyday so i am hoping, like i said, i can get the pump to control it.
ShakeyAmy 3 years ago
Hi Amy I'm so sorry for you having to live with this Disorder. I just wanted to ask you if you have ever considered Deep Brain Surgery. thank you.
netengeargirly2k 3 years ago
DBS was the treatment option given to me- and really the only one except just using meds to treat symptoms and botox. I found out about the baclofen pump and since i was dealing with a pain level i could no longer tolerate i decided if the pump slowed my invol. movement maybe the pain over time would lessen.
ShakeyAmy 3 years ago
everyone needs to remember that dealing with the ignorance is part of the cross that is dystonia. your brave for posting these, ShakyAmy. Please let me know if there's anything I can do to help in your fight. God bless.
orangedrum 3 years ago
I'm sorry you had to read what those Internet idiots say. So I have CD too and I wondered if you have tried botox injections.
laxbro4 3 years ago
I was 30,single,going out doing everything you do.Suddenly everything was gone.either in a scooter or wheelchair-suddenly have to ASK for help-ASK for rides when I have a car.Your life can change no matter how much u think u control it.Everyday is different for me. Work is 10 times harder.Walking is 20% because i have a machine in my abdomen and spine which scrambles the signals that made me twitch but ALSO scramble good signals how to walk/how to drive/hold things.if u r a jerk don't post.:)
ShakeyAmy 3 years ago
Seriously- Some of these comments remind me why I keep fighting. I tell anyone I can about dystonia. I may be having a bad day and kids look at me thinking what's wrong with her she's not 80? The ignorant comments on here- you guys just think for a minute. I never was sick. I never broke a bone, had a cavity,or had been to the hospital. In ONE DAY i lost the ability to walk and as dystonia took over my right side I would not be able to breath-or talk-or read-or go out.
ShakeyAmy 3 years ago
I applaud your courage for videotaping and uploading this to the internet. I also suffer from CD and yes, it's a heinous disorder and sometimes the pain makes me so frantic I can't think properly.
I was interested to read your ending "credits" when you said you experience memory loss. Is that common for CD? I also have issues with my STM, but thought it was due to my medication.
We survivors of Cervical Dystonia are among the strongest people anywhere, ever. ^.^
krazeediamond 3 years ago
Sorry to hear about your pain.You might look into Rolfing to work on your problem.I say some people get relief by getting their psoas worked out in Rolfing you may want to dod a google search with Rolfing with your condition in the tittle search.
john333iii 3 years ago
Amy, I too suffer from cervical dystonia. It sucks. I too have had to lean against my chair to stop spasms. Then I started receiving botox injections. I am so much better. I go to Michael Hayes at St. Elizabeth's Hospital in Boston. In my book he's a genius. I hope you find your way to greater healing. God bless.
linzyarn 3 years ago
I also received botox for about 2 years now for dystonia.......I'm am now in remission although I do still take artane 2 times a day.
colerain777 3 years ago
SO SORRY, i hope u are doing better.
yemmas 3 years ago
There isn't anything funny about dystonia ChubbyNipples.
seattlegirlishere 3 years ago
No, not Dystonia, but if you didn't know she had it you would laugh, or think she was stroking out.
ChubbyNipples 3 years ago