Also, my voice comes out normally when combined with yawning/laughing, for example.

David Barton (AD/SD, Auckland, NZ)

Yes. Absolutely yes. It's one of the most frustrating *things* about our disorder and is quite typical. Nobody understands that but us though. They think we're making it up. At least people I know do.

Thanks for bringing up this subject. It's a good one.

I feel for the SD'ers out there who have no one, though. Especially the ones who have no idea what they have. We have to find them. Awareness and support is everything.

With an outgoing call, the SD person is the one who has to identify themselves. I've never met an SD person who didn't have particular trouble with giving their name, address, phone number.

Gosh, these posts take me back to when I was an untreated case (ie: severe AD/SD, before RLN surgery). These days, it's even hard to relate to other SD'ers because my docs and I have discovered I am unlike any other case anywhere. Yep...I have (or had) extremely severe AD/SD with tremors. Corrected (treated) by surgery? Right...I get used to a whole new routine. With everything in my vocal/respiratory system failing, who knows what is going on or what a voice is?

With all of that in mind, I can relate to what all of you are saying because - as much I can't talk or breathe when I'm at home - I got a major dose of *Adrenalin* last week in Miami, just being around people who understand me. They all said I sounded good, even though I was still suffering from breathing problems and talking over noise killed me and my voice was dead when I got home. My head (headaches due to trying to talk) was dead also.

Once again, we're all different and have to educate the docs because I don't think there is a "medical professional" in the universe who can figure this complexity out. If we can't, how can they?

Also, re some threads on the BB recently (experts?), there were some docs in Florida who were seriously promoting the concept of a patient-doctor partnership. Dr. Mark Stacy, from Phoenix (the Mohammed Ali Parkinson's Clinic) was a huge proponent of patients and doctors as a partnership. As he said...docs are a "vendor of services." Communication, communication, communication. Docs are human too.

As SD patients, we need to go find the docs we can work with. Patients and docs need to understand how FRUSTRATING and erractic our vocal responses can be. By the month/day...and often by the minute. I seriously can not get a handle on any *voice-predicability* these days, with my own vocal instrument.

I've been through the full routine. Untreated, extremely severe case. Treated case. Looked (sounded) good for a few years. Could predict the cycle. And, now. 100% erratic. Can't work. Can't predict. Can't even go out of my house some days without someone with me.

What's normal? I forgot. SD is the adventure of a lifetime. Hang on.

This is my first time on this BB but I have been experiencing the symptoms of AD/SD for a few years and have had Botox injections for about a year. For me, they work pretty darn well. It's just a matter of trying to deal with having a weak voice, not being able to speak over noise, which is really a big change since I am only 25 and used to go to loud bars, music shows, etc. It's been a crazy, crazy time these last few years and i must admit I haven't dealt with it as productively as I might. I am amazed at the courage, optimism, tenacity, and endurance I am reading so much in the postings on here.

Anyways, in regard to the psychiatric thing, I kindof diagnosed myself incorrectly as SD being just a symptom of anxiety. For me, my voice gets worse when I am self-conscious. There seems to be a big element to it of me thinking about it while talking or someone pointing it out or me trying to explain it. Being on the phone is rough and can continue to be so just out of the memory of past times.

I do like though how someone said in here that it's a huge step forward in trying to accept it and learning to not care that I sound pretty damn strange. I am lucky that with Botox I am able to communicate in most regular noise-level situations. I did go though about 8 months where it was very hard to talk at work (a stressful environment) to the point where I couldn't be understood sometimes.

SD is not fun, I must say. There are times when i have nightmares about not being able to speak and the terror that brings. And when you think about it, the voice is the one major thing we have to communicate with others. It's so crazy to have this disease where you are so fearful of using your voice out of the embarrassment, misunderstanding, etc.

But anyways, I definitely am glad I finally am using this BB. I was prescribed Neurontin by my psychiatrist right before I got my first Botox shot, so I'm not certain what each contributed, but it did help. If anything though it made me less anxious and self-aware and I think by removing some of these elements, I just didn't worry about my voice as much. But to be told by a psychiatrist that you have a throat stutter and it's all mental really shook me. I still struggle with it at times in terms of accepting and being open about SD to others.

So, thanks for listening, Happy Thanksgiving, and I look forward to being back on here sometime soon.