Asregular readers know, about two years ago I lost my ability to speak.The problem is called spasmodic dysphonia (SD). This update isprimarily for the benefit of the other people with SD. Many of youasked about my experience and for any advice. The rest of you will findthis 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 voiceclips, at the National Spasomodic Dysphonia Association (NSDA) website: 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. MortonCooper’s method of treating spasmodic dysphonia, using what he callsDirect Voice Rehabilitation. I just spent a week with Dr. Cooper. Dr.Cooper has been reporting “cures” of this condition for 35 years. He’sa 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 newself-published book, CURING HOPELESS VOICES, that Allergan’s deeppockets control the information about spasmodic dysphonia, ensuringthat it is seen as a neurological condition with only one reliabletreatment: Botox. I have no opinion on that. I’m just telling you whatDr. Cooper says.
Botox shots are expensive. Your health insurance would cover it, butI heard estimates that averaged around $2,500 per shot. I believe itdepends on the dose, and the dose varies for each individual. Eachperson receiving Botox for spasmodic dysphonia would need anywhere from4 to 12 shots per year. Worldwide, Dr. Cooper estimates that millionsof people have this condition. It’s big money. (The “official”estimates of people with SD are much lower. Dr. Cooper believes thoseestimates 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. Evenindividual treatments vary widely. I think I had about 5 treatments.Two were great. Two were marginal. One didn’t seem to help much. Andthe shots themselves are highly unpleasant for some people (but notvery painful).
I’ve heard stories of people who feel entirely happy with Botox. Forthem, it’s a godsend. And I’ve heard stories of people who had okayresults, like mine. Dr. Cooper says that people with the abductor typeof dysphonia can be made worse by Botox. I know one person with theabductor type who lost his voice completely after Botox, buttemporarily. 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 betterthan Botox. (More on that later.) And you can see for yourself that theNSDA web site doesn’t mention Dr. Cooper’s methods as an option. Itdoesn’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 neurologicalproblem as is claimed by the medical community. He claims that it iscaused by using the voice improperly until you essentially lose theability to speak correctly. Most people (including me) get spasmodicdysphonia after a bout with some sort of routine throat problem such asallergies or bronchitis. The routine problem causes you to strain yourvoice. By the time the routine problem is cleared up, you’ve solidifiedyour bad speaking habits and can’t find your way back. Dr. Cooper’smethods seek to teach you how to speak properly without any drugs orsurgery.
Some people get spasmodic dysphonia without any obvious trigger. Inthose cases, the cause might be misuse of the voice over a long periodof 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 aconversation, 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 anunnatural breathiness to it, especially for the week or two after theshot. And the Botox wore off after several weeks, so there was always aperiod of poor voice until the next shot.
2. It looked as if I would need up to ten shots per year. That’s tenhalf days from my life each year, because of travel time. And the dreadof the shot itself was always with me.
3. The shots aren’t physically painful in any meaningful way. Butyou do spend about a minute with a needle through the front of yourthroat, poking around for the right (two) place in the back of yourthroat. Your urges to cough and swallow are sometimes overwhelming, andthat’s not something you want to do with a needle in your throat.(Other people – maybe most people – handle the shots without muchproblem.)
4. I couldn’t do public speaking with my “Botox voice.” It was tooweak to project on stage. People with spasmodic dysphonia can oftensing and act and do public speaking without symptoms. That was mysituation. Public speaking is a big part of my income.
I used Botox to get through the “I do” part of my wedding in July of2006. Then I took a break from it to see if I could make any gainswithout it. My voice worsened predictably as the last Botox shot woreoff. 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 enoughon stage. I could sing. About half of the time I could speak okay onthe phone. In quiet conversations I was okay most of the time. But Icould barely speak at all if there was any background noise.
Do you know how often you need to talk in the presence of backgroundnoise? It’s often. And it wasn’t just a case of trying to speak overthe noise. There’s something mysterious about spasmodic dysphonia thatshuts off your ability to speak if there is background noise.
As I wrote in a previous post, one day I was practicing my speakingwith a nursery rhyme at home. Something happened. My normal voicereturned. It happened suddenly, and it stuck. The media picked up thestory from my blog and suddenly it was national news.
My voice stayed great until I caught a cold a few weeks later. Thecold changed my speaking pattern, and I regressed. With practice, Ibrought 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 withspasmodic 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 listenedto me on the phone, having an especially bad phone day, and he said hecould help. I listened to his spiel, about how it’s not really aneurological problem, that he’s been curing it for years, and that themedical community is in the pocket of Allergan.
Dr. Cooper is what can be described as a “character.” He’s 75, has adeep, wonderful voice, and gives every impression of being a crackpotconspiracy theorist. His price was $5K per week, and he reckoned frommy phone voice that I needed at least a week of working with him, witha small group of other spasmodic dysphonia patients. Two weeks of workwould be better. (The hardcore cases take a month.) I would have to flyto LA and live in a nearby hotel for a week. So it’s an expensiveproposition unless you can get your insurance to pay for it. (Sometimesthey do if you have a referral from a neurologist.)
Needless to say, I was skeptical. Dr. Cooper sent me his DVD thatshows patients before and after. I still wasn’t convinced. I asked forreferences. I spoke with a well-known celebrity who said Dr. Cooperhelped 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 voicesproperly. Their hearing is fine in general. The only exception is theirown voices. In particular, SD people think they are shouting when theyspeak in a normal voice. I confirmed that to be true with me. I neededthree 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 Ispeak normally. It has something to do with the fact that I hear my ownvoice through the bones in my head. In a crowded restaurant, if I speakin a voice to be heard across the table, I am positive it can be heardacross the entire restaurant. Most SD patients have this illusion.
People with SD speak too low in the throat, because society gives usthe impression that a deep voice sounds better. Our deep voice becomesso much a part of our self image and identity that we resist speakingin the higher pitch that would allow us to speak perfectly. Moreover,DS people have a hugely difficult time maintaining speech at a highpitch because they can’t hear the difference between the higher andlower pitch. Again, this is not a general hearing problem, just aproblem with hearing your own voice. I confirmed that to be true withme. When I think I am speaking like a little girl, it sounds normalwhen played back on a recording.
(People with abductor SD are sometimes the opposite. They speak attoo high a pitch and need to speak lower. That doesn’t seem to be asocietal identity thing as much as a bad habit.)
Since SD people can’t “hear” themselves properly, they can’t speakproperly. It’s similar to the problem that deaf people have, but adifferent flavor. As a substitute for hearing yourself, Dr. Cooper’svoice rehabilitation therapy involves intensive practice until you can“feel” the right vibration in your face. You learn to recognize yourcorrect voice by feel instead of sound.
People with SD breathe “backwards” when they talk. Instead ofexhaling normally while talking, our stomachs stiffen up and we stopbreathing. That provides no “gas for the car” as Dr. Cooper is fond ofsaying. You can’t talk unless air is coming out of your lungs. Iconfirmed this to be true for all four patients in my group. Each of usessentially stopped breathing when we tried to talk.
The breathing issue explains to me why people with SD can oftensing, or in my case speak on stage. You naturally breathe differentlyin those situations.
DR. COOPER’S METHOD
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He calls it Direct Voice Rehabilitation. I thought it was a fancymarketing way of saying “speech therapy,” but over time I came to agreethat 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 “glottalfry” in your throat, essentially a deep motorboat type of sound. Dr.Cooper teaches you to unlearn using that part of the throat forANYTHING because that’s where the problem is.
Regular speech therapy also teaches you to practice the sounds thatgive you trouble. Dr. Cooper’s method involves changing the pitch andbreathing, and that automatically fixes your ability to say all sounds.
To put it another way, regular speech therapy for SD involvespractice speaking with the “wrong” part of your throat, according toDr. Cooper. If true, this would explain why regular speech therapy iscompletely 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 surprisinglyhard to learn how to breathe, hit the right pitch, and think at thesame time. That’s why it takes anywhere from a week to a month ofintense practice to get it.
Compare it to learning tennis, where you have to keep your eye onthe ball, use the right stroke, and have the right footwork.Individually, those processes are easy to learn. But it takes a longtime 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’soffice. Lunchtime was also used for practicing as a group in a noisyrestaurant environment. This level of intensity seemed important to me.For a solid week, I focused on speaking correctly all of the time. Idoubt it would be as effective to spend the same amount of time in onehour increments, because you would slip into bad habits too quickly inbetween 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 oneach others’ stomachs and observed. Sure enough, our stomachs didn’tcollapse as we spoke. So we all learned to breathe right, firstsilently, then while humming, and allowing our stomachs to relax on theexhale.
The first two days we spent a few hours in our own rooms humminginto devices that showed our pitch. It’s easier to hum the right pitchthan to speak it, for some reason. The point of the humming was tolearn to “feel” the right pitch in the vibrations of our face. To findthe 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 ifagreeing 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 usof the basics. We’d try to talk, and he’d point out that our stomachsweren’t moving, or that our pitch was too low.
Eventually I graduated to humming words at the right pitch. I didn’tsay the words, just hummed them. Then I graduated to hum-talking. Iwould 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 vintagerecorder to interview us and make us talk. This was an opportunity forus all to see each other’s progress and for him to reinforce thelessons and correct mistakes. And it was a confidence booster becauseany good sentences were met with group compliments. The confidencefactor can’t be discounted. There is something about knowing you can dosomething that makes it easier to do. And the positive feedback made ahuge difference. Likewise, seeing someone else’s progress made yourealize that you could do the same.
When SD people talk, they often drop words, like a bad cell phoneconnection. So if an SD patient tries to say, “The baby has a ball,” itmight sound like “The b---y –as a –all.” Dr. Cooper had two tricks forfixing that, in addition to the breathing and higher pitch, which takescare of most of it.
One trick is to up-talk the problem words, meaning to raise yourpitch on the syllables you would normally drop your pitch on. In yourhead, it sounds wrong, but to others, it sounds about right. Forexample, with the word “baby” I would normally drop down in pitch fromthe first b to the second, and that would cause my problem. But if Ispeak 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 arethinking. So when I have trouble ordering a Diet Coke (Diet is hard tosay), instead I can say, “I’ll have a mmm-Diet Coke.” It looks like I’mjust pausing to think.
Dr. Cooper invented what he calls the “C Spot” method for findingthe right vocal pitch. You put two fingers on your stomach, just belowthe breastbone, and talk while pressing it quickly and repeatedly, likea fast Morse code operator. It sort of tickles, sort of relaxes you,sort of changes your breathing, and makes you sound like you aresitting on a washing machine, e.g. uh-uh-uh-uh. But it helps you findyour right pitch.
Dr. Cooper repeats himself a lot. (If any of his patients arereading this, they are laughing at my understatement.) At first itseems nutty. Eventually you realize that he’s using a Rasputin-likeapproach to drill these simple concepts into you via repetition. Ican’t begin to tell you how many times he repeated the advice to speakhigher and breathe right, each time as if it was the first.
Eventually we patients were telling each other to keep our pitchesup, or down. The peer influence and the continuous feedback wereessential, 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 callsand practice on the phone. For people with SD, talking on the phone isvirtually impossible. I could speak flawlessly on the phone by the endof the week.
RESULTS
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During my week, there were three other patients with SD in thegroup. Three of us had the adductor type and one had abductor. Onepatient had SD for 30 years, another for 18, one for 3 years, and I hadit for 2. The patients who had it the longest were recommended for aone 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 ahigh, garbled voice. His goal was to speak at a lower pitch, and by theend of the week he could do it, albeit with some concentration. It wasa huge improvement.
The patient with SD for 30 years learned to speak perfectly whenevershe kept her pitch high. But after only one week of training, shecouldn’t summon that pitch and keep it all the time. I would say shehad a 25% improvement in a week. That tracked with Dr. Cooper’sexpectations from the start.
The patient with SD for 18 years could barely speak above a hoarsewhisper at the beginning of the week. By the end of the week she couldoften produce normal words. I’d say she was at least 25% better. Shecould have benefited from another three weeks.
I went from being unable to speak in noisy environments to beingable to communicate fairly well as long as I keep my pitch high. Andwhen I slip, I can identify exactly what I did wrong. I don’t know howto put a percentage improvement on my case, but the difference is lifechanging. I expect continued improvement with practice, now that I havethe method down. I still have trouble judging my own volume and pitchfrom the sound, but I know what it “feels” like to do it right.
Dr. Cooper claims decades of “cures” for allegedly incurable SD, andoffers plenty of documentation to support the claim, including video ofbefore-and-afters, and peer reviewed papers. I am not qualified tojudge what is a cure and what is an improvement or a workaround. Butfrom my experience, it produces results.
If SD is a neurological problem, it’s hard to explain why people canrecover just by talking differently. It’s also hard to understand howbronchitis causes that neurological problem in the first place. Sowhile I am not qualified to judge Dr. Cooper’s theories, they do passthe sniff test with flying colors.
And remember that nursery rhyme that seemed to help me the firsttime? Guess what pitch I repeated it in. It was higher than normal.
I hope this information helps.
