SD as Neurological Condition

I believe we need to remind ourselves that SD is a neurological disorder, the outward manifestation of laryngeal dystonia, as it were. This was explained well at the Detroit symposium - that SD is the name given to how we sound, but the disorder is actually laryngeal dystonia.

It is easy to be distracted by claims that SD is the result of 'vocal abuse', 'stress', or 'vitamin deficiencies' etc. and that there is something we can do to make it go away because it is 'our fault' in some way. While the "make my SD go away" options such as acupuncture, vitamin B-6, holistic health, magnet therapy etc have their advocates they are of limited or no use in treating cases of 'true' SD in my opinion.

As you say, the current 'fixes' for SD such as Botox and the various surgery options, deal with the symptoms, not the underlying problem. That is why the ongoing research in the dystonia field is so important to us.

I can't recommend him highly enough if you're dealing with a case of SD in this part of the world. My NZ doctors Bren Dorman and Elizabeth Walker are excellent too - Paul Darveniza trained them in giving Botox injections for SD for the first time in NZ in 1991 - I was the first patient.

Let us know how you get on.

See my recent post to Tatiana. Neurological (AND all the related stuff you two describe)!! With 8 cases of Parkinson's and 2 cases of Paranoid Schizophrenia in my recent-maternal genetic line, if anyone tells me SD is NOT neurological, I just about bust up in laughter. That contention is a joke, in my particular case, and others I've become familiar with also.

And, per my post today to Renee, it is my mother (not my father) who has the gene-structure which gave me the neurological make-up which enabled SD; AND, it is also my mother who refuses to admit that and is still in denial over 10 years later. Just as some folks on the BB and in pre-dx are in denial. My mother has enabled me to gain ALOT of practice in people who will not acknowledge SD as a neurological (and real) condition. She and I do not speak and that is sad. She blames ME for my vocal problems and refuses to acknowledge a VERY observable, family-connection on *her* side. Some patients are like my mom. People have to learn and see for themselves. Sure wish I could figure out a way for my mom to walk in my shoes...as well as some patients.

My case (depression and all that related garbage also, as you mention, Narelle) is SO VERY genetic and neurologically-obvious that I think someone should study me as a pure case. Dedo did call my case "classic" though so I guess he hit on it when the other ignorant voice-specialists (for several years) missed completely. And, by the way Narelle (FYI), the major population of us SD'ers in Michigan at the symposium had our cases come on gradually rather than suddenly. Dr. Rolnick conducted a show of hands and 90% came on gradually with only 10% coming on suddenly. You are unique!

If folks want to try everything under the sun (which I did also for over four years) that's their perogative. Since some (secondary) SD cases are caused by toxins, drugs, et al, I figure current patients seeking a solution can try everything the rest of us tried for many years. None of the numerous nine or ten alternative methods worked for me but everyone has to do what they have to do. All bodies and minds are different; and, after all, the docs in Michigan admitted that their diagnoses weren't 100% accurate. If someone has *something* which sounds like SD and isn't, it's probably an OK idea if patients try all kinds of possibilities, just to eliminate possibilities. Their case may not be SD(?). The couple of folks in Michigan who said speech therapy worked for them are probably good examples of bad diagnoses or very mild cases. At least one person probably never had SD in the first place.

To each his/her own. Anyone on this BB at least has the access to all of our deep research and experience and that should benefit all....new and old. It does rile me though when anyone contends that SD is not neurological, if only based on extensive evidence to the contrary for so many of our cases.

Even though the doctor I've got to acknowledge the relevance of SD in my life is in a totally different field than most typical professionals that would do it she DOES have EXTENSIVE experience in developmental delays and differences in children, and by it's very nature, this means a lot in terms of motor development and problems and etc. so she has quite a lot of knowledge and experience with the neurological side of things!!! (I was pretty nervous when I brought it up with her 'cuase of my past experiences, even though she's great, but I figured if anyone's going to understand it/look at the neurological side of things, it'll be her. And once she understood that it happens when I'm not stressed too, she was convinced it was neuro. That was when I felt confident enough to show her the article specifically on SD.)

I am glad you have found this website. The NSDA has truly been a lifesaver for me. Especially after suffering for so many years without a proper diagnosis. I am sorry to hear that you have to deal with Autism along with your SD. I can only imagine how though that could be to handle.

I know having had to deal with such complex illnesses has really helped me to be a stronger person overall and I am grateful for that. Because now I have more sympathy for others who are suffering/disabled.

I hope you don't take this wrong, but it sounds like to me that you are dealing with a lot of anger in coping with your disabilities. I know for me, I have had a lot of angry, depression, sadness, etc. I have come to realize that being angry doesn't help anything, however it is a grieving stage everyone has to go through upon learning you have a disorder/disability. I am glad you have found a place to release and vent some of your feelings. I feel like all of us have had to go through this at one point or time in our life's. Maybe, I have the wrong Idea here, and if I do please forgive me, cause it is not my intention to make anyone feel upset, etc. I only want to help and to vent how I have felt from dealing with SD in the mid life stream.

Why? I like being autistic. I particularly like having the rest of the diagnosis so I have an explantion for why I am different, and can grow in the proper direction appreciating my differences and skills rather than constantly feeling guilty or 'defective' for my difficulties. I REALLY like being able to explain tot her people why I am the way I am and that there is nothing wrong with that! It has made a HUGE difference in my self esteem and sense of self value!

What I hate is having to deal with a world that doesnt' understand, generally has no clue, and generally doesn't care that they don't have a clue and are VERY ill suited to my needs, and is even more resistant to change than I am, and so refuse to accomodate me even in very simple ways, simply 'cause they are 'not normal'. Having been forced for many years (nearly to the point of my destruction) to 'be normal' -not only 'act normal', is the thing that caused the most damage, and is what you should be sorry for, if anyhting. That I was not allowed to grow up learning who I as and being accepted for who I was; that I was continually denigrated and dismissed because I was "not normal". Being forced to be "human' or normal would be the worst existence I could imagine, and I wouldn't wish it on ANYbody it's not natural to. (not saying being 'normal' is inherently bad in itself, but for someone who it does not come naturally to to be forced into that mold IS!!) And I can speak from experience.

You wrote:"I can only imagine how though that could be to handle."

I assume you mean "tough"... so it's a little tricky sometimes, no more so difficult than any other disability that involves variant levels of ability and functionality. I'd rather be this way than any way else!!! In my opinion, nondisabled people are very narrow minded and, to be honest, boring. I really feel they are missing a lot in life not seeing things outside their narrow perceptions of life, and other people.Not that this is confined to only nondisabled people, but they are more likely to possesse it.

You wrote: "I hope you don't take this wrong, but it sounds like to that you are dealing with a lot of anger in coping with your disabilities."

It's not the disabilities I have the anger about; it's the handicaps imposed by a world that doesn't seem to give a damn and is TOTALLY resistant to even LEARNING about differences in people. Particularly when they affect the supposedly 'core' aspects of being human. I am no less a person just because I don't prefer to communicate verbally, and don't see the meaning in most socialization. I do, however, consider it an insult to be called 'human'. "Humanoid" I will accept, but 'human' I find insulting. -Just my personal view. Most 'typical' humans are of the narrow minded, non-disabled type, and I in no way want to be associated with them. Anyways, I'm ranting, and I'll quit now unless anyone emails me privately and asks me otherwise.

Yes, you have the wrong idea about how I view my disabilities, but that's okay, I'm fully capable of correcting that. :) (assuming, of course, you're willing to take int eh new information,w hich it sounds like you are. :) )

Excuse the bitterness you may hear, I've had a particularly crappy couple of years, and only had all of my negative views of humans reinforced repeatedly, especially in teh last year and a half or so. My current landlords are also screwing with my life right now, so I'm in a particularly "cursing humans' mode right now. And of course, they WOULD have to have chosen two weeks before I had to write my deferred final in one of my classes to screw with my life, which put my ability to write it in jepardy repeatedly, which made me VERY angry. I wrote it, and am now in the process of melting down afterwards. Rather volitile mood when it comes to being screwed with right now. (not that anyone here is, but...just saying my emotions are a little hard to control right now.)

I do view the SD and some of the other more recently developing motor problems with more annoyance than the other aspects of my disability/difference/strange neurological make up, mainly 'cause they interefere with my life more, or represent genuine losses to any previous level of functioning, -and may be degenerative, which is scary, and the fact that no one really knows is even more annoying, but I try to adapt as well as possible. Right now I'm pretty upset at the world in general, more specifically the humans in the rold of my landlords 'cuase they are interfering with my ability to have a life,a nd I am REALLY tired of people screwing with my life and not allowing me to HAVE a life. I'm not mad at the disability, 'cause it's just a part of me, I'm mad at the world which is causing it to be such a handicap when it doesnt' need to be if some people would only show a little common sense and common courtesy!!! (and they at least are SUPPOSED to possess these things to a 'typical' degree, sure as hell more than i am, and yet the opposite seems to be the case!!)

anyways, sorry, I'm ranting again, didnt' mean to do that; just...

I am truly Sorry I had the idea about your feeling/disibilities. I have to be honest, I truly misunderstood the word Autism/Autistic. I would appreciate it if you would e-mail be privately lets get to know each other and understand one another more clearly. I apologize to the NSDA Bulletin Board and to You for anything I have said that offended you or your ability.

Most people don't know much about autism, and what they do know is largely mis-information, so all they hear about is the bad stuff. they don't hear about anything else, and most don't even believe high functioning forms can exist. Autism Network International and AutFriends International are two organizations which are trying to change this opinion. autistics.org hosts both organizations webpages. if anybody else wants to see more accurate information from an autistic perspective.

Don't worry about it, you didn't offend me. I was just ranting in general, not at anybody in particular.

I'd like to Welcome you to the BB. I am sorry to learn of your difficulties and I wish you the best. I have heard of Blepharospasm, but I am not that familiar with this term. I have had ADSD for 17 years. I was told I had a functional dystonia when I first began my search in finding a diagnosis for SD. I am still trying to understand all of this and I don't know what to say at this point.

Other than I am here for you and I understand your flustration. I will be glad to help you an anyway I can. I think that some of the others here have more knowledge and understanding on the subject than I do. I know you've come to the right place to gain more knowledge on this subject. Regards, Jan

My (non-expert) opinion is that if your voice is fine then you don't have SD - in other words, the dystonia you have is not laryngeal. However it's entirely possible you might have dystonia affecting the throat, possibly the pharynx, and upper chest and this could affect your breathing. The structure of the larynx itself has very small muscles, and these mainly control the voice. If you did have SD (laryngeal dystonia), you would definitely be aware of problems and effort in using your voice.

Other readers may have an input on this too.

Good luck in your search for answers.

David's "non-expert" opinion cuts straight to the matter. If your voice sounds normal (whatever that is), and more importantly, if it does not require significantly more effort (at least for ADSD ... I don't know about ABSD) to push the words out, you don't have SD.

And that's a good thing.

A web site I found to be very enlightening is http://www.dystonia-foundation.org/nsda. You will find audio samples of both ADSD and ABSD, as well as VERY good multimedia information.

Thanks for again putting out the link.

I have found that the "audios" are much more mild than many of our cases. IOW, many of the cases people will hear in person, if they visit a symposium or get to know SD'ers in person, are MUCH worse than these audios. Mine certainly was. I couldn't be understood at all.

Please support the NSDA (which provides this BB and these services, so that we can meet each other and hear others who sound like us). Send a check or debit your credit card through this link. The organization needs us BB-participants in order to survive.

Education is the first step to a cure.

My voice is now degrading rapidly. Most often my mouth moves and no sound comes out. When sound does come out, its raspy and broken. But I keep trying.

I think there are different causes for SD. Some may well be inherited and some appears to either be caused by or "triggered" by different forms of stress to the body. I was sitting in the first doctors office in Houston who was giving me Botox injections and who had determined my condition and was visiting with another patient who was waiting to get a Botox injection for his SD. He was 10 years old and had gotten hit in the chest by another little league football players helmet in the same place that I was injured. I think the odds of both of our cases not being related to some form of nerve damage or tissue damage and causing SD would be a real long shot. I am thankful for having such a great doctor and for the benefit that am getting from Neurontin. I'm glad you are seeing some benefit as well.
I "appears" that many can relate the first symptoms of SD to a stress to the body and many can't but I seem to be hearing that Neurontin has benefited SD symptoms in both type of cases.

I wonder if the combined effects of the seat belt and air bag caused a trauma that brought on SD. Hmmm?

FYI, it is possible for SD ( and other types of dystonia )to be triggered by a blow to the head or sudden trauma or birth injury. You might want to check in with a neurologist who could run further tests to see if the blow to your head area has caused other problems.

That is so pathetic! The health care system in the U.S. needs an upgrade.

There may be lots of differences in our cases because as Lynne says, each of us are unique, but we all have one rare thing in common: the spasms in our vocal cords. I’ve had catches and breaks in my voice for more than six years, and in many occasions I could barely talk at all. I know what it is to struggle just to be able to say a few words. I hated to record my own voice because it made me cry and feel depressed for a long time. I think I’ve had True SD.

I don’t think we can say there’s a True SD and another that just “Mimic” it or is Just Muscular Tension. What I do believe is that there may be a neurological (genetic) SD and another from unknown origin. At the moment there’s no known cure for neither one of them. There are a few “miracle”, as some of you have called them, cases of recovery from SD, mine included . They may be an evidence of a possible cure. If a cause can be discovered, a cure may be found for some of us, and this is a possibility worth to be researched, additionally to the ongoing research in the dystonia field.

Maybe it is not as important to get better terminology in the future as to get better ways of diagnosing our SD cases and a better understanding of its causes. Only this way, will doctors be able to make more accurate diagnosis, and we will have better treatment options.

I don’t think any of us should blame ourselves or think SD is our own fault. It is sad for me also that in the past, when doctors didn’t know nothing about SD we’ve had to suffer from thinking it was all in our heads. Narelle, I share your feelings about this because I’ve also been told many times to calm down when I knew I wasn’t nervous, just couldn’t talk, and SD also had a strong negative impact on my self-esteem for many years. If you tell me I just had MTD then I should doubt also of my personal and professional abilities because in spite of the fact that I am a speech pathologist I wasn't able to talk for so many years.

I’m now convinced we all suffer from an “invisible” disability as Lynne pointed out, but it may be from different etiologies (origins). Marylin’s experience proves that an underlying physical problem can cause SD, and Don Dunlop chest injury also. There may be another physical explanation (not simple voice misuse or abuse) for some of our SD cases that hasn’t been discovered yet and to it I was referring in my previous post.

I think I’m fighting your same battle and I understand your points of view because I’ve walked in your shoes. I just would like to give back a little of what I’ve have learned in a hard way and explore some other possibilities in search of more answers and a possible cure, that might benefit many of us.

http://news.excite.com/news/ap/010523/17/placebo-effect

They cast doubt on whether there is any such thing as a placebo effect, and feel it is more likely that any improvement in the condition could just be a result of the underlying disorder/disease waxing and waning, or the body taking responsibility for its own healing in a natural way rather than the treatment making any difference.

David