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
-------------------------------
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
------------
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
-------------------------
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
-------------
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.
