I have had spasmodic torticollis for over 10 years. My head pulls to the right and I also have facial tremors that may or may not be part of my dystonia. I am 59 years old. This disease causes isolation and depression for me. Some people stare at me or glimpse at my condition and this causes the isolation. I get botox about every 3 months which lasts for about 2 months. The muslce contractions are like a burning sensation. However, I do feel lucky compared to other ST people. God Bless you all.
I had not been in here to see it recently and realized they took off the music.. so I added something from the UTube playlist. No longer is it playing Over The Rainbow by Eva Cassidy, but something just as nice! I hope more and more ppl come and view this video.. and bring more awareness to this dibilitating disease! Thanks,everyone!
Thank you,LiL'One! This project was a real journey for me, for I got to know these fabulous people almost as well an my own family. Their stories are inspiring!
You can stop the video with the lower right hand button to read the frames better, and then you can resume watching it by clicking on same button.
Remember..WE ALL THANK YOU FOR VIEWING THIS VIDEO!
I have had spasmodic torticollis for over 10 years. My head pulls to the right and I also have facial tremors that may or may not be part of my dystonia. I am 59 years old. This disease causes isolation and depression for me. Some people stare at me or glimpse at my condition and this causes the isolation. I get botox about every 3 months which lasts for about 2 months. The muslce contractions are like a burning sensation. However, I do feel lucky compared to other ST people. God Bless you all.
sr80311 1 year ago
chris from oregon early onset focal dystonai in right hand at first then to generalized myoclonus dystonia
cathomas3 1 year ago
chris from oregon early onset focal dystonai in right hand at first then to generalized myoclonus dystonia
cathomas3 1 year ago
i hope one day they find a cure for all of you
gangsta22jami 1 year ago
A wonderful presentation! A terrible disease! Thank you for putting it here for all to see
46BlueWhite 1 year ago
i 2 jus recently diagnosed wit cervical dystonia,,,freakn sucks eh,,, i am 28, Cree from Cross Lake, Mb, Canada,,peace to uall n God Bless ;)
bsontom09 2 years ago
I hope they get well
ahalalsuna 2 years ago
great video and great compassion buy you i they all get well
ahalalsuna 2 years ago
Comment removed
bacardee 2 years ago
that little girl in the wheelchair broke my heart
destroyallnerds 2 years ago
A young girl i saw on youtube got dystonia 10 days after she got a flu vaccine. STRANGE????
fettkatt87 2 years ago 2
Great video, Thanks..
evac171 2 years ago
lol smiling eyes
memanwho 2 years ago
there like all from arizona and im i live in arizona =0
SirDefstar 2 years ago
my husband has writers cramp but heis complete denial i am concerned for him thanks for showing it does happen
ijs050892 2 years ago
I had not been in here to see it recently and realized they took off the music.. so I added something from the UTube playlist. No longer is it playing Over The Rainbow by Eva Cassidy, but something just as nice! I hope more and more ppl come and view this video.. and bring more awareness to this dibilitating disease! Thanks,everyone!
Luvslulu
luvslulu 2 years ago
Thank you,LiL'One! This project was a real journey for me, for I got to know these fabulous people almost as well an my own family. Their stories are inspiring!
You can stop the video with the lower right hand button to read the frames better, and then you can resume watching it by clicking on same button.
Remember..WE ALL THANK YOU FOR VIEWING THIS VIDEO!
A DYSTONIA CURE IS OUR PRIORITY..
ONE DAY AT A TIME..
ONE PERSON AT A TIME..
ONE NEW DISCOVERY AT A TIME.
Luvslulu..aka Nana P!!!
luvslulu 3 years ago
So many faces, so many causes, so many types of Dystonia ... all in one spot, way to go Nana P; You did a marvelous job !!!!
ResilientLilOne 3 years ago