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Starting a discussion group for Spasmodic Dysphonia: Will you join?

Posted by sguttmann @sguttmann, Mar 25, 2022

I have Spasmodic dysphonia, which is a rare disorder affecting the vocal cords. Only treatment for now is Botox, which does help. Otherwise, I struggle with trying to talk, my voice breaks up when speaking. There are about 4,500 people who are living with this disorder. It can be very debilitating, depressing and frustrating. It affects the muscles in the throat and has a link to the wiring of the basal ganglia. Any help, comments or tried and true self help treatments would be helpful to hear about. Thank you!

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 11 9:07pm
In reply to @vistagan "Hi, I'm in the UK and there is not a lot of information regarding this condition,..." + (show)
@vistagan

Hi,
I'm in the UK and there is not a lot of information regarding this condition,
After searching, i came across this forum, i was diagnosed 4 years ago and i get very frustrated,
I have a strange question, and was wondering if anyone else has had a similar experience,
I have found when i've had a few Guinness {my tipple} i speak with no problems, but the next morning i am back to having the same symptoms,
I find if i can talk with no problem when drunk,, what good would botox do, there must be some other disorder they haven't found,

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Welcome, @vistagan. I'm tagging @sguttmann, @katgallant, @bruceandruth1970 and others to make sure they saw your first post and question.

REPLY
bruceandruth1970 | @bruceandruth1970 | Feb 12 7:58am
In reply to @vistagan "Hi, I'm in the UK and there is not a lot of information regarding this condition,..." + (show)
@vistagan

Hi,
I'm in the UK and there is not a lot of information regarding this condition,
After searching, i came across this forum, i was diagnosed 4 years ago and i get very frustrated,
I have a strange question, and was wondering if anyone else has had a similar experience,
I have found when i've had a few Guinness {my tipple} i speak with no problems, but the next morning i am back to having the same symptoms,
I find if i can talk with no problem when drunk,, what good would botox do, there must be some other disorder they haven't found,

Jump to this post

My Spasmodic Dysphonia was diagnosed in 1983, so there are probably more options now. At that time the doctor paralyzed the left vocal cord. It has left my voice raspy, but there is no problem speaking. I also did some speech therapy and Botox injections afterwards.

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