My daughter is suffering with cervical dystonia that Botox for some reason isn’t helping. We are in search of @home treatments like the massage technique you were talking about that I can do on her. Can you please let me know what the tool is called that you used for your dystonia? And any other useful information you have on how to use the tool would be much appreciated!

Jesus Christ, our Savior, Loves you all Always. ❤ ✝️

Please help

I have a hard time breathing in when I sing and speak for years. I think this is what the Dr said I had. When I sing, sometimes my voice breaks and doesnt reach the notes. Frustrating and scary. \○/ Jesus ✝️

Very clear explanation, even for me, easy to understand (I`m Dutch so I compliment for talking not too fast and very understandeble)

Vielen Danke ❤

Good afernoon sir my husband suffer ganeral dystonia started july 2021 can I ask you if you have foundation to helpping this kind of illness to cure please help us I cann't afford to support for medication.

Can I ask you sir if you have foundation to help of those who suffer in this kind of illlness my husband suffer general dystonia I can'nt afford @ thats why I ask help please

My husband suffering in this kind of illness started july 2021 up to now can I ask if you have foundation to help people can'nt afford to pay in tjis kind of sickness if ever they have please my husband please. Thank you very much

Hello my husband suffering this kind of illness he suffered general dystonia in 4 yrs up to now thats why I try to msge your page @ he need help if you have foundation please help my husband dystonia europe to cure this kind of sickness thank you so much.

Horrible pain whole body parts 😢

Neurologists here won't even see me and say there's nothing they can do. My doctor has tried.

What about the dystonia seizures?

Why did Rose laugh?? Not kind at all!!!

Dystonia is a word that is part of my world every minute of every day since Parkinson's diagnosis. Took 4 yrs to get there because I don't have a tremor. My neck and shoulders blade muscles are in constant pain. Very limited in life at 50. Carbidopa levodopa helps tremendously. I feel this professor is talking directly to me!!😊 Thank you for information.

Great advice, thank you! I am still waiting to see a neurologist, but from everything I've read I'm fairly sure I have CD. So this gives me some direction to work with, in the meantime.

I have generalized dystonia, including gastrointestinal dystonia. It took 20 YEARS to get to a Neurosurgeon who explicitly works with movement disorders. Please don't take this wrong, but your video made me feel better that my dystonia does not affect my eyes. (Yet.) I pray you are getting exceptional care.😊

I have a hard time taking a breathe when I sing and speak. I've sung for many years. I'm so sad 😞 I have a hard time reaching notes I once did

What medications cause dystonia? Can Sertraline cause dystonia?

Hi, I can't find an option in the dystonia type selection while signing up on the app.

I went to so many doctors, some even suggesting the inability to control my mouth movement was in my head. After approximately two years of horrible suffering I was finally diagnosed, and began getting injections from a movement disorder neurologist. My hope for people currently misdiagnosed is that there is more attention brought to this particular type of dystonia so they don’t have to endure what the rest of us have gone through in the initial stages of this disease.

Dziękujemy za wszystko czego dokonałeś dla innych chorujących na dystonię. Tak mi przykro, że już nie ma cię z nami. Odpoczywaj w pokoju ❤

My hands cramp when I clean or cook sometimes flares up when I'm trying to write or type but its usually just cooking and cleaning mostly. I had an emg and nothing shown on my right arm or hand. Dr said something was wrong with my left elbow but because it happens equally in my left and right hand she wants me to do an mri but I can't afford one right now.

Ja, leider ist es so. Meine Spitzname in der Arbeit - "Wackeldackel" 😅

I have throat dystonia. No one is listening. I've had this for 16 or maybe 17 yrs. I have quit breathing multiple times. I wish someone would listen to me. This is not anxiety. They keep giving me anxiety medication. Where these meds are awsome, they do not help. I just recently found. A. name. Alcohol helps very much.i do nor like drinking. I wish someone would listen. I've starred to quit breathing when I sleep. I wish.someone would listen. I just want someone to listen

I really would like to know what it is exactly what you do with this tool. Rubbing one neck muscle? Does the tool have a name. Is there a video with those exercises? Thank you for your story.

I started this yesterday, I pray it works ❤

Waking Famagusta

superb summary!

You need to talk about medications that people have taken from the doctor like Metronidazole ,that causes Dystonia in people ,also could be genetic!

Why you didnt explain mechanism of development od dystonia? Why dbs helps, why should be dbs of gpi not thalamus?

I’m very curious what your thoughts are on “serial casting” for foot dystonia. My daughter was recently diagnosed with generalized dystonia and doctors have done 2 rounds of serial casting on her feet. Both times have disabled her completely. First time took at least 6 months to learn to walk again. This time she has yet to walk since I demanded they remove the casts. Starting Botox injections next week then they want to continue casting her feet. I don’t want this at all. But I need a dystonia doctor to confirm my belief that the casting is making her dystonia worse.

I went to 35 medical professionals, including 4 speech therapists and 8 neurologists. I diagnosed this myself after 4 1/2 years. It is only treated correctly by a movement disorder neurologist specializing in dystonia such as at northwestern in Winfield, Il. Dr. Gera gopal. The general and even a couple movement disorder neurologists had no clue. Good luck to you!

I’ve have lower limb Dysonia one foot and leg had it since 12 I thought it was normal and only started research it cause it has increased in episodes that it takes place it randomly happens when I lay down or sat down….. but I’m not aware of it being related to Parkinson’s I need to ask my doctors cause I always thought this was normal infill I started having contractions 2-3 days and my toes curl and fold on top of eachther

Tellement difficile

hardly ever included with fibromyalgia and never treated for the pain with actual pain medication. Treated with literally anything else is a wide open doorway to patient abuse by undermedicating the patient. its cruel behavior by NPs and PAs to ignor patients pain.

This is weird!!!!

There is no help

Torso and legs left side

Definitely anxiety

Head trauma

What about dystonia seizures?

I’ve been living with this condition for 35 years now. Initially I saw a gp who dismissed me as being a time waster. That put me off ever seeking help. I have brief respites from it very occasionally. No apparent reason why, but in those times I no longer feel like a freak. I have noticed that the less at ease I feel with someone, the harder it becomes to speak. If I get really anxious I can barely speak at all. As a result, I shy away from people and situations in order to avoid the embarrassment and shame I feel, and the more negative attention it gets the worse it becomes. It’s a catch 22 and I can honestly say it has held me back from being the person I know I am inside. Funnily enough, I am a professional saxophonist and sing backing vocals in bands. I imagine speaking and singing use different parts of the brain. Is there any organisation in the UK that anyone knows of who I might get in touch with? If so, please drop me a message. I live in hope 🙏

That was really helpful. I am so glad Helga found some relief.

❤❤❤❤❤❤ gorgeous

Parkinson disease🤢 is a very terrible illness, my Dad suffered from it for 19 years until we finally got a help and a medicine from Dr Madida that truly works that helped treat, cure and reversed all his symptoms completely💯…My Dad is well again...

Sadly though with dystonia there are no family or friends as nobody believes you have it. As well as the doctors.

Hi dr hi whean tell because my problem neck problem after surgery scoliosis my posters new my head cramp and muscle vekenas full body go to poster back normal how can do dr.ples pls help me.

DYSTONIA Is a divestating disease, I rather die than having this problem for the rest of my life

I have cervical DYSTONIA, very very painful, it’s horrible disease 😢I did deep brain surgery, didn’t help my pain, but my tremors stopped.