I have a lot of respect for people like this woman. They are brave enough to sit in front of a camera and describe their disability so that medical students like myself can have a better understanding of the disease. I sincerely appreciate what they do, and wish that I could thank them for having the courage to describe something that has severed their quality of life. They deserve one hell of a round-of-applause.
I agree, much respect to this woman. But maybe this is what we should all be doing! I personally feel no shame for my diagnosis and am open to share my experience with dystonia. Anyone on afflicted with this disorder knows there needs to be LOTS more research and awareness. This is a step in the direction. The more of us that expose ourselves so candidly, I believe, the sooner we’ll see those advancements in understanding, identification, proper diagnosis and treatment.
I have been diagnosed with this. I have mild. I know what this lady is talking about... But I am no way as bad as this. This lady has made me understand a lot. NHS are very helpful here with me and thank God for this service and my nurse. My heart goes out to this woman and the students that are understanding this to learn to carry their understanding onto this terrible misunderstood disease.
I live in the US, but listening and watching this lady is like looking in a mirror. Her movements, twists, her struggle with speech, her attempts to forcefully correct her posture and the description of her limited home and social life are so eerily familiar. She even appears to be quite thin and have the same issues with medications that I have experienced. As a fellow Dystonia patient, it helps to hear someone tell your story. Many thanks to for sharing. BJ Kelley
I have cervical dystonia. I wear a neck collar everyday. Usually I use collars that are narrower than a regular wide collar as I find this gets uncomfortable after awhile. But on really bad days I have to use the wider collar as it give more support and lessens the pain somewhat. Sounds a little contradictory but so is dystonia. If I didn't use a neck collar, I would not be able to keep the spasms under any control and the pain would be much worse. Also I do stretching of the neck muscles everyday. Lately things seem much worse (I've had CD for 20 years) and am supposed to have an MRI. But I had a severe claustrophobic reaction to the MRI 18 years ago and am very nervous about doing it now so I might not get it done.
I have segmental dystonia....it's tonic and it was pulling my bones apart until I got surgery in '97. Then, I had to invent my own phys-therapy cass nobody knew what to do here where I live. If I hadn't researched it on my own, it would have killed me. It's no way to live. Tonic is where you have one stuck posture, phasic is the trembling stuff
Rogério de Paula Aguilar I have cervical dystonia too. It hurts so much. botox shots help, get a good neurologist. plus make sure you have complete medical insurance, shots very exspensive, Sue
I have a lot of respect for people like this woman. They are brave enough to sit in front of a camera and describe their disability so that medical students like myself can have a better understanding of the disease. I sincerely appreciate what they do, and wish that I could thank them for having the courage to describe something that has severed their quality of life. They deserve one hell of a round-of-applause.
I agree, much respect to this woman. But maybe this is what we should all be doing! I personally feel no shame for my diagnosis and am open to share my experience with dystonia.
Anyone on afflicted with this disorder knows there needs to be LOTS more research and awareness. This is a step in the direction. The more of us that expose ourselves so candidly, I believe, the sooner we’ll see those advancements in understanding, identification, proper diagnosis and treatment.
I have been diagnosed with this. I have mild. I know what this lady is talking about... But I am no way as bad as this. This lady has made me understand a lot. NHS are very helpful here with me and thank God for this service and my nurse. My heart goes out to this woman and the students that are understanding this to learn to carry their understanding onto this terrible misunderstood disease.
I live in the US, but listening and watching this lady is like looking in a mirror. Her movements, twists, her struggle with speech, her attempts to forcefully correct her posture and the description of her limited home and social life are so eerily familiar. She even appears to be quite thin and have the same issues with medications that I have experienced. As a fellow Dystonia patient, it helps to hear someone tell your story. Many thanks to for sharing. BJ Kelley
I have dystonia I'm 27 , I find in stressful situations it gets bad and my head begins to tremble .
I have cervical dystonia. I wear a neck collar everyday. Usually I use collars that are narrower than a regular wide collar as I find this gets uncomfortable after awhile. But on really bad days I have to use the wider collar as it give more support and lessens the pain somewhat. Sounds a little contradictory but so is dystonia. If I didn't use a neck collar, I would not be able to keep the spasms under any control and the pain would be much worse. Also I do stretching of the neck muscles everyday. Lately things seem much worse (I've had CD for 20 years) and am supposed to have an MRI. But I had a severe claustrophobic reaction to the MRI 18 years ago and am very nervous about doing it now so I might not get it done.
I have segmental dystonia....it's tonic and it was pulling my bones apart until I got surgery in '97. Then, I had to invent my own phys-therapy cass nobody knew what to do here where I live. If I hadn't researched it on my own, it would have killed me. It's no way to live. Tonic is where you have one stuck posture, phasic is the trembling stuff
Hi, my name is Rogério. I hope you are better. I would like to know if you have found something that helped lessen the symptoms. Thanks.
Rogério de Paula Aguilar I have cervical dystonia too. It hurts so much. botox shots help, get a good neurologist. plus make sure you have complete medical insurance, shots very exspensive, Sue
@@suehenderson6949 where are you from I am from India who is suffering from cervical dystonia
@@raajuraaju5156 benzos help
@@tylerpool5464 tell me
@@raajuraaju5156 clonazepam or xanex. I had it really bad but both of these help. But they are addictive so find a doctor if you can.
I tried akineton (biperidon) this is the best