Posted by: David Barton ®
12/13/2005, 23:46:48
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Hello RobbIn my opinion what you are describing are examples of 'dystonic tricks' or 'gestes antagonistes'. You probably already know that SD is a type of focal dystonia (the medical term is 'laryngeal dystonia')- that affects the vocal cords. Other types affect the eyes, neck, hand etc. I used to find in the early days of my SD it helped somewhat to place my fingers on my neck in the voice box area as I spoke. Over time these 'tricks' usually become less effective. They are well-documented in the literature - one of the weirdest ones is that some people with cervical dystonia (neck) find their symptoms disappear when they walk backwards! If you google for 'dystonic tricks' or 'gestes antagonistes' you'll find more information. Here is an extract from the WeMove site about these dystonic tricks: Many patients temporarily suppress dystonic movements or spasms by "sensory tricks." These tricks usually consist of touching the affected or adjacent body parts. Also known as gestes antagonistes, these sensory tricks are a phenomenon almost unique to dystonia; therefore, they may play a helpful role in differential diagnosis. Examples of commonly described sensory tricks include... * Placing a hand on the side of the face, the chin, or the back of the head or touching these areas with one or more fingers may sometimes reduce neck contractions associated with cervical dystonia. Also known as spasmodic torticollis, cervical dystonia is characterized by abnormal movements or postures of the neck and head.
* Applying pressure on the eyebrows or touching skin to the side of the eyes may improve involuntary contractions of eyelid muscles or blepharospasm.
* Touching the chin or the lips, applying pressure beneath the chin, or placing an object in the mouth, such as a toothpick, may reduce dystonia of the jaw, mouth, and lower face (oromandibular dystonia).
* Touching the affected hand with the other hand may help to alleviate writer's cramp.
* Leaning against the wall while standing, pressing on the hips, or applying pressure to the back of the neck may help to alleviate dystonia of the trunk (truncal dystonia).
David Barton (AD/SD, Auckland, NZ)
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Posted by: Robb ®
12/14/2005, 08:23:46
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Hi David,
Thanks for the info. My suggestions do indeed strike me as "tricks," and as I alluded, they're not really working ... I guess I'm wondering what, if anything, works besides botox, as I wait to get in to see a doc. My problem is voice specific, and is definitely a spasm that sounds like the AD type. Doesn't occur when I whisper, so for a while I was whispering a statement to myself first and then trying to say it, but still failing.
Thanks,
Robb
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Posted by: Emily Lim ®
12/15/2005, 00:43:03
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Hi RobbI had a huge phone phobia for the longest time. Then a couple of years back, my husband bought me one of the those phones with built-in microphones from the US and it's made a big difference. Psychologically, I'm more confident when using the phone. As a result, I also "push/force" my voice less, so it comes out better. I also try to break up my sentences into parts so it's easier for the other party to catch. And sometimes it also helps when I explain my voice upfront, as takes the pressure and awkwardness off both sides. And well, thank God for emails! If the discussion/conversation gets too complex, I follow up with email to make sure the message is understood right - extra work, but helps a lot though. Emily Lim
Ab-sd,Singapore
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Posted by: Marilee ®
12/15/2005, 12:35:53
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Robb, I hope you don't have to wait too long to get
in to a doctor, hopefully an otolaryngologist (ENT),
who is experienced with SD and Botox, because Botox
really is the best help for most of us. But it isn't
100%, so we still need our "tricks" to help cope.
I have had adSD and all the other cranial & cervical
dystonias for 5 yrs. now, and Botox gives the best
relief, but there are still "ups & downs".One thing I do when on the phone is sit so I can hold
(support) my head with one hand while talking. And if
YOU are the one making the call, try to do it when you
are less tired, because fatigue or stress of any kind
makes it worse. Keep us posted how you are doing! And just a word to Emily: I answered your post now on
page 2, on a similar subject. Glad to hear from you
all the way from Singapore. I like your thinking!
Hope to hear more from you. Best wishes to all,
Marilee (Indiana, U.S.)
Modified by Marilee at Thu, Dec 15, 2005, 12:37:11
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Posted by: Robb ®
12/15/2005, 19:49:10
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Very true about being rested up. If I'm short on sleep it's certain to be worse. And if I've had alcohol the night before, which can make it better that night but worse the next day, so not worth it.The worst for me is picking up. I've tried deep relaxation, exercise, distraction, but I still get violent breaks in "hello" and, worse, in my own name when picking up. Which makes me inclined not to.
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