Dakusan’s Domain > Archive > Posts > 2008

As regular readers of my blog know, I lost my voice about 18 months ago. Permanently. It’s something exotic called Spasmodic Dysphonia. Essentially a part of the brain that controls speech just shuts down in some people, usually after you strain your voice during a bout with allergies (in my case) or some other sort of normal laryngitis. It happens to people in my age bracket.

I asked my doctor – a specialist for this condition – how many people have ever gotten better. Answer: zero. While there’s no cure, painful Botox injections through the front of the neck and into the vocal cords can stop the spasms for a few months. That weakens the muscles that otherwise spasm, but your voice is breathy and weak.

The weirdest part of this phenomenon is that speech is processed in different parts of the brain depending on the context. So people with this problem can often sing but they can’t talk. In my case I could do my normal professional speaking to large crowds but I could barely whisper and grunt off stage. And most people with this condition report they have the most trouble talking on the telephone or when there is background noise. I can speak normally alone, but not around others. That makes it sound like a social anxiety problem, but it’s really just a different context, because I could easily sing to those same people.

I stopped getting the Botox shots because although they allowed me to talk for a few weeks, my voice was too weak for public speaking. So at least until the fall speaking season ended, I chose to maximize my onstage voice at the expense of being able to speak in person.

My family and friends have been great. They read my lips as best they can. They lean in to hear the whispers. They guess. They put up with my six tries to say one word. And my personality is completely altered. My normal wittiness becomes slow and deliberate. And often, when it takes effort to speak a word intelligibly, the wrong word comes out because too much of my focus is on the effort of talking instead of the thinking of what to say. So a lot of the things that came out of my mouth frankly made no sense.

To state the obvious, much of life’s pleasure is diminished when you can’t speak. It has been tough.

But have I mentioned I’m an optimist?

Just because no one has ever gotten better from Spasmodic Dysphonia before doesn’t mean I can’t be the first. So every day for months and months I tried new tricks to regain my voice. I visualized speaking correctly and repeatedly told myself I could (affirmations). I used self hypnosis. I used voice therapy exercises. I spoke in higher pitches, or changing pitches. I observed when my voice worked best and when it was worst and looked for patterns. I tried speaking in foreign accents. I tried “singing” some words that were especially hard.

My theory was that the part of my brain responsible for normal speech was still intact, but for some reason had become disconnected from the neural pathways to my vocal cords. (That’s consistent with any expert’s best guess of what’s happening with Spasmodic Dysphonia. It’s somewhat mysterious.) And so I reasoned that there was some way to remap that connection. All I needed to do was find the type of speaking or context most similar – but still different enough – from normal speech that still worked. Once I could speak in that slightly different context, I would continue to close the gap between the different-context speech and normal speech until my neural pathways remapped. Well, that was my theory. But I’m no brain surgeon.

The day before yesterday, while helping on a homework assignment, I noticed I could speak perfectly in rhyme. Rhyme was a context I hadn’t considered. A poem isn’t singing and it isn’t regular talking. But for some reason the context is just different enough from normal speech that my brain handled it fine.

Jack be nimble, Jack be quick.
Jack jumped over the candlestick.

I repeated it dozens of times, partly because I could. It was effortless, even though it was similar to regular speech. I enjoyed repeating it, hearing the sound of my own voice working almost flawlessly. I longed for that sound, and the memory of normal speech. Perhaps the rhyme took me back to my own childhood too. Or maybe it’s just plain catchy. I enjoyed repeating it more than I should have. Then something happened.

My brain remapped.

My speech returned.

Not 100%, but close, like a car starting up on a cold winter night. And so I talked that night. A lot. And all the next day. A few times I felt my voice slipping away, so I repeated the nursery rhyme and tuned it back in. By the following night my voice was almost completely normal.

When I say my brain remapped, that’s the best description I have. During the worst of my voice problems, I would know in advance that I couldn’t get a word out. It was if I could feel the lack of connection between my brain and my vocal cords. But suddenly, yesterday, I felt the connection again. It wasn’t just being able to speak, it was KNOWING how. The knowing returned.

I still don’t know if this is permanent. But I do know that for one day I got to speak normally. And this is one of the happiest days of my life.

But enough about me. Leave me a comment telling me the happiest moment of YOUR life. Keep it brief. Only good news today. I don’t want to hear anything else.

As regular readers know, about two years ago I lost my ability to speak. The problem is called spasmodic dysphonia (SD). This update is primarily for the benefit of the other people with SD. Many of you asked about my experience and for any advice. The rest of you will find this post too detailed. Feel free to skip it.

First, some background.

There are two types of spasmodic dysphonia.

Adductor: The vocal cords clench when you try to speak, causing a strangled sound. (That is my type.)

Abductor: The vocal cords open when you try to speak, causing a breathy whisper.

You can get more complete information, including hearing voice clips, at the National Spasomodic Dysphonia Association (NSDA) web site: http://www.dysphonia.org/

The NSDA site describes the two medical procedures that are recommended by medical doctors:

1. Botox injections to the vocal cords, several times per year for the rest of your life.

2. Surgery on the vocal cords – a process that only works sometimes and has the risks of surgery.

What you won’t find at that site is information about Dr. Morton Cooper’s method of treating spasmodic dysphonia, using what he calls Direct Voice Rehabilitation. I just spent a week with Dr. Cooper. Dr. Cooper has been reporting “cures” of this condition for 35 years. He’s a PH.d, not MD, and possibly the most famous voice doctor in the world.

According to Dr. Cooper, the NSDA receives funding from Allergan, the company that sells Botox. Dr. Cooper alleges, in his new self-published book, CURING HOPELESS VOICES, that Allergan’s deep pockets control the information about spasmodic dysphonia, ensuring that it is seen as a neurological condition with only one reliable treatment: Botox. I have no opinion on that. I’m just telling you what Dr. Cooper says.

Botox shots are expensive. Your health insurance would cover it, but I heard estimates that averaged around $2,500 per shot. I believe it depends on the dose, and the dose varies for each individual. Each person receiving Botox for spasmodic dysphonia would need anywhere from 4 to 12 shots per year. Worldwide, Dr. Cooper estimates that millions of people have this condition. It’s big money. (The “official” estimates of people with SD are much lower. Dr. Cooper believes those estimates are way off.)

I have no first-hand knowledge of Allergan’s motives or activities. I can tell you that Botox worked for me. But it only gave me a “good” voice about half of the time. Individual results vary widely. Even individual treatments vary widely. I think I had about 5 treatments. Two were great. Two were marginal. One didn’t seem to help much. And the shots themselves are highly unpleasant for some people (but not very painful).

I’ve heard stories of people who feel entirely happy with Botox. For them, it’s a godsend. And I’ve heard stories of people who had okay results, like mine. Dr. Cooper says that people with the abductor type of dysphonia can be made worse by Botox. I know one person with the abductor type who lost his voice completely after Botox, but temporarily. Botox wears off on its own. It’s fairly safe in that sense.

I can tell you that Dr. Cooper’s method worked for me, far better than Botox. (More on that later.) And you can see for yourself that the NSDA web site doesn’t mention Dr. Cooper’s methods as an option. It doesn’t even mention his methods as something that you should avoid. It’s conspicuous in its absence.

Dr. Cooper claims that spasmodic dysphonia is not a neurological problem as is claimed by the medical community. He claims that it is caused by using the voice improperly until you essentially lose the ability to speak correctly. Most people (including me) get spasmodic dysphonia after a bout with some sort of routine throat problem such as allergies or bronchitis. The routine problem causes you to strain your voice. By the time the routine problem is cleared up, you’ve solidified your bad speaking habits and can’t find your way back. Dr. Cooper’s methods seek to teach you how to speak properly without any drugs or surgery.

Some people get spasmodic dysphonia without any obvious trigger. In those cases, the cause might be misuse of the voice over a long period of time, or something yet undiscovered.

Botox Versus Dr. Cooper
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Botox worked for me. It was almost impossible for me to have a conversation, or speak on the phone, until I got my first Botox shot.

But I had some complaints with the Botox-for-life method:

1. Botox made my voice functional, but not good. There was an unnatural breathiness to it, especially for the week or two after the shot. And the Botox wore off after several weeks, so there was always a period of poor voice until the next shot.

2. It looked as if I would need up to ten shots per year. That’s ten half days from my life each year, because of travel time. And the dread of the shot itself was always with me.

3. The shots aren’t physically painful in any meaningful way. But you do spend about a minute with a needle through the front of your throat, poking around for the right (two) place in the back of your throat. Your urges to cough and swallow are sometimes overwhelming, and that’s not something you want to do with a needle in your throat. (Other people – maybe most people – handle the shots without much problem.)

4. I couldn’t do public speaking with my “Botox voice.” It was too weak to project on stage. People with spasmodic dysphonia can often sing and act and do public speaking without symptoms. That was my situation. Public speaking is a big part of my income.

I used Botox to get through the “I do” part of my wedding in July of 2006. Then I took a break from it to see if I could make any gains without it. My voice worsened predictably as the last Botox shot wore off. But it stopped getting worse at a “sometimes okay, often bad” level that was still much better than the pre-Botox days.

I could speak almost perfectly when alone. I could speak well enough on stage. I could sing. About half of the time I could speak okay on the phone. In quiet conversations I was okay most of the time. But I could barely speak at all if there was any background noise.

Do you know how often you need to talk in the presence of background noise? It’s often. And it wasn’t just a case of trying to speak over the noise. There’s something mysterious about spasmodic dysphonia that shuts off your ability to speak if there is background noise.

As I wrote in a previous post, one day I was practicing my speaking with a nursery rhyme at home. Something happened. My normal voice returned. It happened suddenly, and it stuck. The media picked up the story from my blog and suddenly it was national news.

My voice stayed great until I caught a cold a few weeks later. The cold changed my speaking pattern, and I regressed. With practice, I brought it back to the point where I could have quiet conversations. But I was still bedeviled by background noise and sometimes the phone. Despite my lingering problems, it was still amazing that anyone with spasmodic dysphonia would have that much of a spontaneous recovery. I’ve yet to hear of another case. But it wasn’t good enough.

After the media flurry, I got a message from Dr. Cooper. He listened to me on the phone, having an especially bad phone day, and he said he could help. I listened to his spiel, about how it’s not really a neurological problem, that he’s been curing it for years, and that the medical community is in the pocket of Allergan.

Dr. Cooper is what can be described as a “character.” He’s 75, has a deep, wonderful voice, and gives every impression of being a crackpot conspiracy theorist. His price was $5K per week, and he reckoned from my phone voice that I needed at least a week of working with him, with a small group of other spasmodic dysphonia patients. Two weeks of work would be better. (The hardcore cases take a month.) I would have to fly to LA and live in a nearby hotel for a week. So it’s an expensive proposition unless you can get your insurance to pay for it. (Sometimes they do if you have a referral from a neurologist.)

Needless to say, I was skeptical. Dr. Cooper sent me his DVD that shows patients before and after. I still wasn’t convinced. I asked for references. I spoke with a well-known celebrity who said Dr. Cooper helped him. I heard by e-mail from some other people who said Dr. Cooper helped them.

You can see video of before and after patients on his web site at: http://www.voice-doctor.com/

I figured, What the hell? I could afford it. I could find a week. If it didn’t work after a few days, I could go home.

With Dr. Cooper’s permission, I will describe his theory and his treatment process as best I can.

THEORY
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People with spasmodic dysphonia (SD) can’t hear their own voices properly. Their hearing is fine in general. The only exception is their own voices. In particular, SD people think they are shouting when they speak in a normal voice. I confirmed that to be true with me. I needed three other patients, Dr. Cooper, a recording of me in conversation, and my mother on the telephone to tell me that I wasn’t shouting when I speak normally. It has something to do with the fact that I hear my own voice through the bones in my head. In a crowded restaurant, if I speak in a voice to be heard across the table, I am positive it can be heard across the entire restaurant. Most SD patients have this illusion.

People with SD speak too low in the throat, because society gives us the impression that a deep voice sounds better. Our deep voice becomes so much a part of our self image and identity that we resist speaking in the higher pitch that would allow us to speak perfectly. Moreover, DS people have a hugely difficult time maintaining speech at a high pitch because they can’t hear the difference between the higher and lower pitch. Again, this is not a general hearing problem, just a problem with hearing your own voice. I confirmed that to be true with me. When I think I am speaking like a little girl, it sounds normal when played back on a recording.

(People with abductor SD are sometimes the opposite. They speak at too high a pitch and need to speak lower. That doesn’t seem to be a societal identity thing as much as a bad habit.)

Since SD people can’t “hear” themselves properly, they can’t speak properly. It’s similar to the problem that deaf people have, but a different flavor. As a substitute for hearing yourself, Dr. Cooper’s voice rehabilitation therapy involves intensive practice until you can “feel” the right vibration in your face. You learn to recognize your correct voice by feel instead of sound.

People with SD breathe “backwards” when they talk. Instead of exhaling normally while talking, our stomachs stiffen up and we stop breathing. That provides no “gas for the car” as Dr. Cooper is fond of saying. You can’t talk unless air is coming out of your lungs. I confirmed this to be true for all four patients in my group. Each of us essentially stopped breathing when we tried to talk.

The breathing issue explains to me why people with SD can often sing, or in my case speak on stage. You naturally breathe differently in those situations.

DR. COOPER’S METHOD
----------------------------------

He calls it Direct Voice Rehabilitation. I thought it was a fancy marketing way of saying “speech therapy,” but over time I came to agree that it’s different enough to deserve its own name.

Regular speech therapy – which I had already tried to some degree – uses some methods that Dr. Cooper regards as useless or even harmful. For example, a typical speech therapy exercise is to do the “glottal fry” in your throat, essentially a deep motorboat type of sound. Dr. Cooper teaches you to unlearn using that part of the throat for ANYTHING because that’s where the problem is.

Regular speech therapy also teaches you to practice the sounds that give you trouble. Dr. Cooper’s method involves changing the pitch and breathing, and that automatically fixes your ability to say all sounds.

To put it another way, regular speech therapy for SD involves practice speaking with the “wrong” part of your throat, according to Dr. Cooper. If true, this would explain why regular speech therapy is completely ineffective in treating SD.

Dr. Cooper’s method involves these elements:

1. Learning to breathe correctly while speaking
2. Learning to speak at the right pitch
3. Learning to work around your illusion of your own voice.
4. Intense practice all day.

While each of these things is individually easy, it’s surprisingly hard to learn how to breathe, hit the right pitch, and think at the same time. That’s why it takes anywhere from a week to a month of intense practice to get it.

Compare it to learning tennis, where you have to keep your eye on the ball, use the right stroke, and have the right footwork. Individually, those processes are easy to learn. But it takes a long time to do them all correctly at the same time.

NUTS AND BOLTS
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I spent Monday through Friday, from 9 am to 2 pm at Dr. Cooper’s office. Lunchtime was also used for practicing as a group in a noisy restaurant environment. This level of intensity seemed important to me. For a solid week, I focused on speaking correctly all of the time. I doubt it would be as effective to spend the same amount of time in one hour increments, because you would slip into bad habits too quickly in between sessions.

Dr. Cooper started by showing us how we were breathing incorrectly. I don’t think any of us believed it until we literally put hands on each others’ stomachs and observed. Sure enough, our stomachs didn’t collapse as we spoke. So we all learned to breathe right, first silently, then while humming, and allowing our stomachs to relax on the exhale.

The first two days we spent a few hours in our own rooms humming into devices that showed our pitch. It’s easier to hum the right pitch than to speak it, for some reason. The point of the humming was to learn to “feel” the right pitch in the vibrations of our face. To find the right pitch, you hum the first bar of the “Happy Birthday” song. You can also find it by saying “mm-hmm” in the way you would say if agreeing with someone in a happy and upbeat way.

The patients who had SD the longest literally couldn’t hum at first. But with lots of work, they started to get it.

Dr. Cooper would pop in on each of us during practice and remind us of the basics. We’d try to talk, and he’d point out that our stomachs weren’t moving, or that our pitch was too low.

Eventually I graduated to humming words at the right pitch. I didn’t say the words, just hummed them. Then I graduated to hum-talking. I would hum briefly and then pronounce a word at the same pitch, as in:

mmm-cow
mmm-horse
mmm-chair

We had frequent group meetings where Dr. Cooper used a 1960s vintage recorder to interview us and make us talk. This was an opportunity for us all to see each other’s progress and for him to reinforce the lessons and correct mistakes. And it was a confidence booster because any good sentences were met with group compliments. The confidence factor can’t be discounted. There is something about knowing you can do something that makes it easier to do. And the positive feedback made a huge difference. Likewise, seeing someone else’s progress made you realize that you could do the same.

When SD people talk, they often drop words, like a bad cell phone connection. So if an SD patient tries to say, “The baby has a ball,” it might sound like “The b---y –as a –all.” Dr. Cooper had two tricks for fixing that, in addition to the breathing and higher pitch, which takes care of most of it.

One trick is to up-talk the problem words, meaning to raise your pitch on the syllables you would normally drop your pitch on. In your head, it sounds wrong, but to others, it sounds about right. For example, with the word “baby” I would normally drop down in pitch from the first b to the second, and that would cause my problem. But if I speak it as though the entire word goes up in pitch, it comes out okay, as long as I also breathe correctly.

Another trick is humming into the problem words as if you are thinking. So when I have trouble ordering a Diet Coke (Diet is hard to say), instead I can say, “I’ll have a mmm-Diet Coke.” It looks like I’m just pausing to think.

Dr. Cooper invented what he calls the “C Spot” method for finding the right vocal pitch. You put two fingers on your stomach, just below the breastbone, and talk while pressing it quickly and repeatedly, like a fast Morse code operator. It sort of tickles, sort of relaxes you, sort of changes your breathing, and makes you sound like you are sitting on a washing machine, e.g. uh-uh-uh-uh. But it helps you find your right pitch.

Dr. Cooper repeats himself a lot. (If any of his patients are reading this, they are laughing at my understatement.) At first it seems nutty. Eventually you realize that he’s using a Rasputin-like approach to drill these simple concepts into you via repetition. I can’t begin to tell you how many times he repeated the advice to speak higher and breathe right, each time as if it was the first.

Eventually we patients were telling each other to keep our pitches up, or down. The peer influence and the continuous feedback were essential, as were the forays into the noisy real world to practice. Normal speech therapy won’t give you that.

Toward the end of the week we were encouraged to make phone calls and practice on the phone. For people with SD, talking on the phone is virtually impossible. I could speak flawlessly on the phone by the end of the week.

RESULTS
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During my week, there were three other patients with SD in the group. Three of us had the adductor type and one had abductor. One patient had SD for 30 years, another for 18, one for 3 years, and I had it for 2. The patients who had it the longest were recommended for a one month stay, but only one could afford the time to do it.

The patient with SD for 3 years had the abductor type and spoke in a high, garbled voice. His goal was to speak at a lower pitch, and by the end of the week he could do it, albeit with some concentration. It was a huge improvement.

The patient with SD for 30 years learned to speak perfectly whenever she kept her pitch high. But after only one week of training, she couldn’t summon that pitch and keep it all the time. I would say she had a 25% improvement in a week. That tracked with Dr. Cooper’s expectations from the start.

The patient with SD for 18 years could barely speak above a hoarse whisper at the beginning of the week. By the end of the week she could often produce normal words. I’d say she was at least 25% better. She could have benefited from another three weeks.

I went from being unable to speak in noisy environments to being able to communicate fairly well as long as I keep my pitch high. And when I slip, I can identify exactly what I did wrong. I don’t know how to put a percentage improvement on my case, but the difference is life changing. I expect continued improvement with practice, now that I have the method down. I still have trouble judging my own volume and pitch from the sound, but I know what it “feels” like to do it right.

Dr. Cooper claims decades of “cures” for allegedly incurable SD, and offers plenty of documentation to support the claim, including video of before-and-afters, and peer reviewed papers. I am not qualified to judge what is a cure and what is an improvement or a workaround. But from my experience, it produces results.

If SD is a neurological problem, it’s hard to explain why people can recover just by talking differently. It’s also hard to understand how bronchitis causes that neurological problem in the first place. So while I am not qualified to judge Dr. Cooper’s theories, they do pass the sniff test with flying colors.

And remember that nursery rhyme that seemed to help me the first time? Guess what pitch I repeated it in. It was higher than normal.

I hope this information helps.

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