Does anyone have any experience in dealing with Dystonia?

airhead

DIS Veteran
Joined
Sep 6, 2000
Messages
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A very good friend was having difficulties with speech. He couldn't control the movement of his tongue. This made him sound drunk! He finally saw a doctor who diagnosed Dystonia. Its heartbreaking to hear him try to talk.
The DIS has a wide spectrum of people dealing with all kinds of ailments. Does anyone out there know someone with Dystonia?
 
Hi,

I read your post and am sorry to hear about your friend. I thought I'd let you know you can get a lot of information (or tell your friend) on the world movement disorder website (WEMOVE). You can google WEMOVE to find it. I think your friend may have spasmodic dysphonia which is a type of dystonia (I've cut and paste some info below). I hope he gets the help he needs. All the best, Hannah

Laryngeal Dystonia
Spasmodic dysphonia or SD is a focal dystonia that affects the vocal cords. It usually becomes apparent between ages 30 to 50 and affects women more frequently than men. There are two distinct forms of SD: adductor SD and abductor SD.

Adductor SD is the more common form of this condition and is characterized by contraction of certain vocal muscles that draw the vocal cords together during speech. This causes the voice to have a restricted, strangled, or hoarse quality. Vocal expression is often interrupted by sudden, short pauses followed by abrupt bursts of speech, which may become less and less understandable. In most patients, singing is not as severely affected as speech.

In abductor SD, contractions of certain muscles that draw the vocal cords apart causes the voice to have a breathy, whispering quality. Patients tend to "run out of air" as they attempt to speak and are unable to speak loudly. As a result, their speech may also be difficult to understand.

Symptom onset is typically relatively gradual. Initial signs often include increased effort during speech and the loss of voice control that occurs with emotional stress. The condition tends to stabilize after about 1 to 2 years of increasing symptom severity. Speech may temporarily improve subsequent to sneezing or yawning. In some patients, sensory tricks, such as pressing the hand on the abdomen or the back of the head, may temporarily relieve symptoms.
 
I have dystonia as a result of Mitochondrial disease.... There are many forms of dystonia as the above poster indicated... Anyhow, my particular problem has been effectively treated using Botox every four months... A laryngologist may be the type of doctor that could be helpful with this particular problem. If the actual problem is with his tongue however, I don't think botox would help. Your friend may be effectively treated, so perhaps this information may help him.

Airhead, I just realized you are from Mass. if your friend is also from Mass, I get my botox through the Mass Eye & Ear Hospital in Boston....
 

I have dystonia as a result of Mitochondrial disease.... There are many forms of dystonia as the above poster indicated... Anyhow, my particular problem has been effectively treated using Botox every four months... A laryngologist may be the type of doctor that could be helpful with this particular problem. If the actual problem is with his tongue however, I don't think botox would help. Your friend may be effectively treated, so perhaps this information may help him.

Airhead, I just realized you are from Mass. if your friend is also from Mass, I get my botox through the Mass Eye & Ear Hospital in Boston....


hello chris.

Hello my mum has just been told that she has dystonia, and that botox is a possible treatment for her, but shes worried as hers is in her neck.
Does the botox injection hurt ? & has this still been an effective treatment for you 4 years on?
 


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