When I get together with my dystonia support group, I don’t feel alone anymore. We look at ourselves as special . I feel God knew we could face any challenges life throws at us. People who suffer from any chronic illness, embrace it with courage and pride knowing we appreciate every moment of our lives.
Someone is out there for you, you just have to keep trying to put yourself out there because how else will you run into that lovely person someday. Don't give up 😊
Wow this is amazing to see. I have Cervical Dystonia, diagnosed at 22, since I was around 12 years old. When I was diagnosed I was so relived because I thought it was just some twitch i had and deep down I knew it wasn't all in my head (pardon the pun) and they quickly set me up with a Neurologist and a treatment plan of Botox injections evey three months and it has been life altering. Now at 25 I still suffer with neck and shoulder pain but I am so greatful I was diagnosed from my fist ever doctors appointment! I live in Ireland and only around 600 people suffer from it and I am so lucky to live right beside the only Dystonia clinic in the country to actively treat Cervical Dystonia. Thank you for raising awarness and keep up the good work.
Seeing this video makes me feel for people with DYSTONIA. I myself diagnosed with cervical DYSTONIA on 2016. I had DBS. Surgery done. Feel much better after that, tremors are gone , but still in pain. It’s not easy to have pain 24/7.
Hello everyone, I have Myoclonus Dystonia and only can encourage everybody to live their life and embrace it with the people you love! I have it since I was a child. And along the way, I was so lucky for my parents, my teachers, my friends,…! Of course, I had tough times, got laughed at, got called out names,… but one thing is for sure > the good prevailed and will prevail! If you give people a chance and tell them how it is, don't hide, ask for help 99% of people will help - even if they laughed first! I met so many people with a great heart, but sometimes you have to dig a little 😊. Don't be ashamed; your life is precious! Stay strong out there, where ever you are!
Diagnosed with a brain stem lesion after getting an MRI to see why I'm having uncontrollable muscle spasms on the whole right side of my body.. im in the process of trying to figure out whats wrong with me and this video made me feel human again. Prayers to anybody going through this.
Thank you for sharing this. I was recently diagnosed with cervical dystonia and my mom has it as well so seeing these videos really helps me and gives me hope
I like that people are being educated about myoclonus dystonia. As parents we were forced to watch our son being abused by teachers and school staff. He was beaten for breathing according to other parents who witnessed our children being abused. Staff believed that dystonia was an ailment we were making up. There were a few teachers who were open minded but they were held back by the system. We've had to educate Medical staff at ERs, thanks for educating people.
I feel them. It took me like two years of me pushing doctors to diagnose me. It was so dark and emotional and painful. In my case was oromandibular, but affecting also my face and head. I couldn’t eat or speak. In my case Botox and Xanax saved my life. And a very understanding doctor at Stanford.
Thank you for sharing this vid! I can feel the empathy. I am not alone in this fight. I like what the one guy said "Its completely life altering" in a sense that we should be more than what we could formerly do. God bless everyone in this fight !
Can u please tell me .what is the treatment and what type the exercise to do in this condition . because I m occupational therapist I have a patient with cervical dystonia
i started having bad tremors after a bad car wreck. Its been hell for me.I cried constantly. I always get people asking if im cold if i need help the stares. Doctors confused as too whats wrong with me. it freaking sucks and i hate it.I cant do any kind of activities like i use too.i cant dance anymore or take a walk in the park and more. I need prayer and strength to learn how to deal with this.
I developed generalized Dystonia from an antidepressant after I had a cardiac arrest and stroke. I was never informed about the side effects. They just called it the happy pill. I would have never taken that particular medication 😢 due to the issues I still can’t walk without a walker and assistance. I guess covid19 restrictions halted my therapy as well 😞
Iam frm the Philippines, i was diagnoses with dystonia at the age of 66, i had a twisted neck and had 2 sessions of botox injections but unforrunately it does'nt work...i do mild exercise to lessen the pain in the neck and shoulder
Thank you so much for putting together this video DMRF Canada. Everyone lets do our part and share this video to help answer the question: What is Dystonia?
I have Cervical Dystonia. 23 years now. first diagnosed 23 years ago, age 29... No one/Docs really knew what it was. I suffered for years. And I still suffer... I get Botox now. Doesn't work...maybe for the first 15 minutes.
I didn't have to go out to find humiliation, just a visit to the dystonia AGM. It was way back in the days when it was held at the LSE in London. I had a slot to speak. The man with the microphone wanted to hold it whilst I spoke, but i needed to hold it myself in order to control things, and after a while I got my way. Sadly I had become stressed and my speech was all wrong, confusion set in giving rise to a silly mixed question to the board of experts. This caused huge laughter from all present. I was humiliated, embarrassed and ashamed, the same feelings that had caused me to resign from work and shy away from society. I was so self aware and shaky, I left the room, never to return, and that's from people who should know better. I don't think anyone there had a clue of the hurt they had caused me, things I get most days of the week at work and elsewhere. I got my train home thoroughly depressed.
Hi, I have cervical dystonia and spasmodic torticollis. I get a lot is encouragement from this site and am a new member. Keep in touch with your support groups. It helps.
Thank you for sharing your comments in here.. Praying for you all.. My GPS sending me to a neurologist to find out if I have tardive dystonia.. I was feeling nauseated with a migraine (8 months ago) and received an injection of maxalon. The ingredient didn't agree with me this time and next day lots of tics.. I'm lifting my shoulders and shrugging, like the lady in the video above... I feel like I have bubbles under my top lip and a lot of toe flexing and scrunching happening... Do you mind if I ask how you guys became ill with this condition?
Thank you for sharing your comments in here.. Praying for you all.. My GPS sending me to a neurologist to find out if I have tardive dystonia.. I was feeling nauseated with a migraine (8 months ago) and received an injection of maxalon. The ingredient didn't agree with me this time and next day lots of tics.. I'm lifting my shoulders and shrugging, like the lady in the video above... I feel like I have bubbles under my top lip and a lot of toe flexing and scrunching happening... Do you mind if I ask how you guys became ill with this condition?
I have dystonia to I don’t like it because I have a deep brain stimulation and I can’t do nothing I can’t work or play sports or have a girlfriend 😢😢💔💔
Many Prayers and thanks for everyone sharing their pains ❤❤❤❤
When I get together with my dystonia support group, I don’t feel alone anymore. We look at ourselves as special . I feel God knew we could face any challenges life throws at us. People who suffer from any chronic illness, embrace it with courage and pride knowing we appreciate every moment of our lives.
I want to hug all these brave people for helping me feel less alone. Thank you
Thank you for the information. Very very helpful in understanding what my son is going through.
cried seeing this, I have cervical dystonia at the age of 34. I am still single, I am very desperate, but this video helps a little.
Had dystonia aged 7. I was single into my late 20s. I struggled to keep hopeful at times. Keep going. YOU are worth it! X
I too have dystonia since 5 years could not get proper treatment till now I can relate to you
thank you people for letting me see I'm not alone
Someone is out there for you, you just have to keep trying to put yourself out there because how else will you run into that lovely person someday. Don't give up 😊
@@divyak8317 what type of treatment did you get
Wow this is amazing to see. I have Cervical Dystonia, diagnosed at 22, since I was around 12 years old. When I was diagnosed I was so relived because I thought it was just some twitch i had and deep down I knew it wasn't all in my head (pardon the pun) and they quickly set me up with a Neurologist and a treatment plan of Botox injections evey three months and it has been life altering. Now at 25 I still suffer with neck and shoulder pain but I am so greatful I was diagnosed from my fist ever doctors appointment! I live in Ireland and only around 600 people suffer from it and I am so lucky to live right beside the only Dystonia clinic in the country to actively treat Cervical Dystonia. Thank you for raising awarness and keep up the good work.
Seeing this video makes me feel for people with DYSTONIA.
I myself diagnosed with cervical DYSTONIA on 2016.
I had DBS. Surgery done. Feel much better after that, tremors are gone , but still in pain. It’s not easy to have pain 24/7.
Hello everyone, I have Myoclonus Dystonia and only can encourage everybody to live their life and embrace it with the people you love! I have it since I was a child. And along the way, I was so lucky for my parents, my teachers, my friends,…! Of course, I had tough times, got laughed at, got called out names,… but one thing is for sure > the good prevailed and will prevail! If you give people a chance and tell them how it is, don't hide, ask for help 99% of people will help - even if they laughed first! I met so many people with a great heart, but sometimes you have to dig a little 😊. Don't be ashamed; your life is precious! Stay strong out there, where ever you are!
I've recently heard myoclonic spasm, possibly, dystonia from my second neurologist of many, thank you for your inspiration.
@sofasheep I have Myclonus Dystonia Syndrome as well. I would love to meet with someone who has the same as me.
Diagnosed with a brain stem lesion after getting an MRI to see why I'm having uncontrollable muscle spasms on the whole right side of my body.. im in the process of trying to figure out whats wrong with me and this video made me feel human again. Prayers to anybody going through this.
me too
Thank you for sharing this. I was recently diagnosed with cervical dystonia and my mom has it as well so seeing these videos really helps me and gives me hope
Thank you for this video! It reminds me that I am not alone in this journey!
I like that people are being educated about myoclonus dystonia. As parents we were forced to watch our son being abused by teachers and school staff. He was beaten for breathing according to other parents who witnessed our children being abused. Staff believed that dystonia was an ailment we were making up. There were a few teachers who were open minded but they were held back by the system. We've had to educate Medical staff at ERs, thanks for educating people.
@@frankyoung3399 I'm so sorry that your son was abused by the teachers for having dystonia which country are you from?
Brought literal tear to my eyes.
I feel them. It took me like two years of me pushing doctors to diagnose me. It was so dark and emotional and painful.
In my case was oromandibular, but affecting also my face and head. I couldn’t eat or speak.
In my case Botox and Xanax saved my life. And a very understanding doctor at Stanford.
Thank you for making this for us
Thank you for sharing this vid! I can feel the empathy. I am not alone in this fight. I like what the one guy said "Its completely life altering" in a sense that we should be more than what we could formerly do. God bless everyone in this fight !
Amazing video! Thank you for doing this. As an artist, dialogues with this just recently. It's tough but got to stay positive and keep on creating.
😪this describes what I've started to get like in the last month and I can't help it ...God Help us all 🙏💜
Can u please tell me .what is the treatment and what type the exercise to do in this condition . because I m occupational therapist I have a patient with cervical dystonia
i started having bad tremors after a bad car wreck. Its been hell for me.I cried constantly. I always get people asking if im cold if i need help the stares. Doctors confused as too whats wrong with me. it freaking sucks and i hate it.I cant do any kind of activities like i use too.i cant dance anymore or take a walk in the park and more. I need prayer and strength to learn how to deal with this.
The pain bothers me the most obviously the tremors are annoying but the pain stops me from doing daily activities
I can feel you guys! And we must strengthen our self in coping with this kind of disorder.
thank you for your courage and sharing your amazing live experience! This helps a lot!
I developed generalized Dystonia from an antidepressant after I had a cardiac arrest and stroke. I was never informed about the side effects. They just called it the happy pill. I would have never taken that particular medication 😢 due to the issues I still can’t walk without a walker and assistance. I guess covid19 restrictions halted my therapy as well 😞
Hi what anti depressant were you on?
Marvelous 👑👑👑 I NEEDED THIS 🌷🌷🌷 I HAVE GENERAL DYSTONIA...
Iam frm the Philippines, i was diagnoses with dystonia at the age of 66, i had a twisted neck and had 2 sessions of botox injections but unforrunately it does'nt work...i do mild exercise to lessen the pain in the neck and shoulder
This is amazing! Thank you for sharing your stories! May I ask what the woman's name is? The one who participated in ironman?
Thank you so much for putting together this video DMRF Canada. Everyone lets do our part and share this video to help answer the question: What is Dystonia?
I have Cervical Dystonia. 23 years now. first diagnosed 23 years ago, age 29... No one/Docs really knew what it was. I suffered for years. And I still suffer... I get Botox now. Doesn't work...maybe for the first 15 minutes.
I didn't have to go out to find humiliation, just a visit to the dystonia AGM. It was way back in the days when it was held at the LSE in London. I had a slot to speak. The man with the microphone wanted to hold it whilst I spoke, but i needed to hold it myself in order to control things, and after a while I got my way. Sadly I had become stressed and my speech was all wrong, confusion set in giving rise to a silly mixed question to the board of experts. This caused huge laughter from all present. I was humiliated, embarrassed and ashamed, the same feelings that had caused me to resign from work and shy away from society. I was so self aware and shaky, I left the room, never to return, and that's from people who should know better. I don't think anyone there had a clue of the hurt they had caused me, things I get most days of the week at work and elsewhere. I got my train home thoroughly depressed.
I have Dystonia ? Please...Write Something Back / Coment Here ?....Amin
Hi 👋 I have cervical dystonia. What type do you have?
@@wishingonastar75 I have generalized dystonia
Hi, I have cervical dystonia and spasmodic torticollis. I get a lot is encouragement from this site and am a new member. Keep in touch with your support groups. It helps.
Thank you for sharing your comments in here.. Praying for you all..
My GPS sending me to a neurologist to find out if I have tardive dystonia..
I was feeling nauseated with a migraine (8 months ago) and received an injection of maxalon. The ingredient didn't agree with me this time and next day lots of tics..
I'm lifting my shoulders and shrugging, like the lady in the video above...
I feel like I have bubbles under my top lip and a lot of toe flexing and scrunching happening...
Do you mind if I ask how you guys became ill with this condition?
Thank you for sharing your comments in here.. Praying for you all..
My GPS sending me to a neurologist to find out if I have tardive dystonia..
I was feeling nauseated with a migraine (8 months ago) and received an injection of maxalon. The ingredient didn't agree with me this time and next day lots of tics..
I'm lifting my shoulders and shrugging, like the lady in the video above...
I feel like I have bubbles under my top lip and a lot of toe flexing and scrunching happening...
Do you mind if I ask how you guys became ill with this condition?
Dystonia is a side effect of using antipsychotic
I have dystonia to I don’t like it because I have a deep brain stimulation and I can’t do nothing I can’t work or play sports or have a girlfriend 😢😢💔💔
i'm lrning that some dystonia is dopa responsive
I could relate to always being asked are you cold? I just answer yes
I have this all over my body Doctors think i have OMS
एलोपथ मे इसका कोई इलाज नहीं हैँ