Vocal Cords
A Context
Dystonia that affects the vocal cords has a profound effect on daily life. It results in a voice that often cannot produce much sound, or a breathy or odd quality to the voice that requires great effort. It affects talking to one’s family, giving vital messages, teaching children or trying to discipline them. It affects shopping, talking to clerks, giving orders at a restaurant or drive through. It makes polite social banter a nearly impossible challenge with neighbors and is challenging in any interactions with authorities.
It interferes with ability to use a telephone even, ironically, when seeking help for the vocal cord problem. For those whose career and income depend on using the voice, it can be career changing, or career ending. Anecdotally it seems to happen with those whose career involves a lot of public speaking- – radio announcers, TV hosts, tour guides, courtroom lawyers, church ministers, and those in customer service who man the phone lines. For singers, the condition can be devastating.
Those with vocal cord dystonia do not visibly have a movement disorder so do not suffer the stigma of a visible disability. However it is an audible disability. Spasmodic dysphonia, or laryngeal dystonia, involves involuntary contractions of the vocal cord muscles, resulting in speech interruptions, breaks or a breathy quality to the voice.
Two types have been identified – abbuctor and adductor. Adductor spasmodic dysphonia, the more common version, happens when vocal cords come together and stiffen, making it hard for them to vibrate. As a result the patient finds it hard to produce sounds. The muscles go into spasms and words get cut off. The voice sounds strangled. Abductor spasmodic dysphonia involves spasms that make the vocal folds open. They cannot vibrate if they are too far open , air escapes from the lungs during speech and the resulting voice sounds breathy and weak.
People report significant challenges socially, including dating and in spousal relationships. The voice produced is sometimes treated by the public as if a joke, and is mocked or people just hang up. At office meetings people with good ideas may hesitate to contribute them and colleagues who notice the problem may tend to overcompensate and finish the speaker’s sentences for them. Those who are asked to speak at a wedding or funeral often struggle not just with the normal stress of public speaking but with making the sounds come out. Patients report that when they are in a stressful situation, and normally would tense up somewhat, the voice becomes even more strained.
Since most in the public have experienced from time to time hoarseness, laryngitis, or nervousness that affects a voice, they may assume that a person with dystonia has one of those conditions. It is common for the listener response to be to get the person to just speak up or to give them a lozenge or to ask them to relax, as if the problem is anxiety.
There may be specific difficulties in saying some sounds. Research has looked at what particular sounds are problematic for the two kinds of dysphonia to understand the mechanics of it. Patients report that they are often misheard. This can create amusing situations or practical frustrations when their name is misheard or vital details like their address, phone number, account number or reason for a complaint. Some patients report problems in being taken seriously.
B. History
1850- Charles Dickens in David Copperfield has one character, Mr.Creakle, who has no voice but speaks in a whisper, suggesting spasmodic dysphonia.
1860s- Ludwig Traube (1818-1876) notices a form of dystonia affecting the vocal cords that he names ‘nervous hoarseness”.
1964 – motion picture entitled ‘Motor speech disorders” (dysarthrias) is made by the Mayo Clinic
2002 – US radio talk show host Diane Rehm writes” Finding My Voice” about her journey with spasmodic dysphonia, vocal cord dystonia.
2018 – Dr. Ludlow and others examine vocal cord dystonia, measure its severity and set down clearer universal guidelines for how to recognize and classify it
2019- Shane Hartline creates a movie about his experience with dystonia of speech, dysphonia, and goes public on April 16, World Voice Day. The film is called ” Cookie: a film about Spasmodic Dysphonia”.
C. What seems useful to study further
1. the mechanics of it
The surveys look at what specific sounds are difficult to produce. what situations tend to be worse, and if there are patterns of time of day, weather.
Since the condition seems more common among those who use their voices a lot , the theory of overuse has studied by some researchers. Most radio announcers and public speakers do not develop this disorder, and some people who do develop it are not public speakers.
2. the variations of it that seem linked to volume
Many report that they cannot speak well above a whisper, but somehow they can yell loudly, enough to rattle windows or be heard across a football field. This oddity surprises nearly everyone. It may be useful to study how the brain message to yell differs or now the muscle response of yelling differs from normal conversation.
3. the variations of it that seem linked to situation
Some report that in nearly all situations they can barely get a sound out. However in crisis, speaking to a 9-1-1 operator they are amazed to hear themselves speak very clearly. Public speaking itself can for some also be a crisis but does not usually improve the voice. Medical crisis calling on an ambulance to come help your child, seems to be a different type of crisis. It may be useful to study in the brain or the vocal cords how those situations operate differently.
Some patients with dysphonia report that they cannot speak easily in nearly any situation, except when they are talking to their dog or a baby. It is not clear if this is a situational difference due to less stress, or due to a difference in intent where the speaker is more of a teacherand caregiver so adopts a mood that shifts the sound production in the brain messaging. Anther possibility is that the speaker when talking to a dog or baby is changing their voice quality slightly on purpose, to a lower pitch, or more playful or ‘babytalk’ mode. This may make a difference in the mechanics of the vocal cords or in the messaging from the brain.
In the complexity of human communication what a person says is only one of many elements of how listeners register another person’s message. Other key parts of it are the warmth of their voice, the pitch which may hint about their gender or mood, the volume which may hint about emotion or their own hearing deficits or confidence. Patients already very familiar with the complex way speakers are judged by their voice, report the challenge of correcting wrong impressions in those areas. These phenomena may provide useful study linking the mechanics of voice and psychology.
4. the variations of it that seem linked to music
Patients often report changes in ability to sing. Some cannot speak well but still can sing. Others can no longer sing. One theory of dystonia is that the first few seconds of any new body position are not painful for those with neck dystonia for instance, but that within about 20 seconds the pain starts and by 45 seconds is so intense that the person shifts position. This constant repositioning, to avoid pain, suggests that if a person were to reposition before that time was up, for instance every 15 seconds, they could escape pain entirely. The mechanism of that theory may be useful to study for a number of implications
-that body tremor is actually trying to reposition very freqnently to avoid pain
-that dancing feels good for people with dystonia because it involves that frequent repositioning
-that singing similarly involves frequent repositioning of the vocal cords
That theory seems to break down however when tremor is itself painful, or when singing is more difficult not less, with dystonia.
Some people with dementia who become nearly unable to speak, somehow can still sing. They often have real problems with memory of where they are, who they are or how to brush their teeth but for some reason can still sit down and play the piano well. The way that music is processed in the brain seems separate from the processing of speech. The fact that music is an aid to memory is noticed in the singing of nursery rhymes, the chanting little kids do of the alphabet, and the use of many ad slogans in song. When there is a problem with speech but not with musical production of the same sound, an area of study worthwhile to pursue might be the location of the brain that processes music. It is also not clear what aspect of music makes it a special situation, whether it is rhythm or possibly pitch.
Some patients report changes in their ability to whistle while others report no changes. This also could be studied. A separate examination of music, rhythm and dystonia is made in a later chapter
5. vocal range, accent, or assumed voice
Many with vocal cord dystonia report that they are not able to speak in a normal conversational voice but they can get sounds out quite well if they on purpose contort their voice
-some find if they speak in a cartoonish voice, it is much easier to say the words
-some find if they fake a foreign accent the words come out more easily
-some find if the speak falsetto the words come out more easily
The mechanics of this type of sensory trick could be studied to determine if the vocal cords are used slightly differently in those situations or if the messaging from the brain is along slightly different paths.
The phenomenon of voice shifting may not be the same for all patients. Some report that their dystonic voice already sounds like they are a cartoon character or on helium. Do they also find they can get a more normal voice if they fake a different character voice?
Many with dystonia who can get a sound out better if they speak falsetto or in cartoon voice, however, hesitate to use that voice because that immediately destroys their credibility.
6. other sensory tricks
People with vocal cord dystonia report other oddities. Several find that the voice which is so hard to produce, loosens up and becomes nearly normal after drinking a few sips of wine. Others find the effect with some brands of beer and many are very knowledgeable about the type of beverage that creates the effect, how many minutes it takes for the effect to begin, and how long it lasts – which is often only for a few minutes.
7. proofs and audio tapes
Some patients have created audio tapes of their voice they find useful to demonstrate how their voice changes. Audio equipment is now sophisticated to study speech- pauses, pitch, volume, rhythm, pronunciation. Some patients report that the testing situation can affect their performance however. Some say that it is only when they forget they are being recorded that the more common speaking challenges are evident. \
8. when it is easier
Many patients have experimented at length with ways to cope, from avoiding background noise, preparing in advance what they have to say, using a voice simulator or phone app to speak for them. Some write down messages to present to clerks, some have a note on their door that indicates they have a voice disorder and some carry a calling card or wear a button to tell people they have a voice disorder. The ways people cope may reduce the stress of a social interaction and may even help with voice production.
D. Comments from patient experience
first signs
It started with slight speech problems that I thought was due to my dental braces
Her voice got tired easily when she was singing
She said that sometimes in her mouth it felt like she was tasting metal
pause, lack of sound
Sometimes for several days I can barely talk
pitch, volume, airiness and sound quality
It seems like I have about 6 voices, each sounding different
It was hard to talk and was like a gasp and a stutter but I don’t have asthma
I sound like a cartoon character
I sound like a frog
I sound like the Godfather
I sound like a character on helium
My speech was slow and unclear. I could not talk properly
effect on daily life
I sometimes have trouble getting words out to start a sentence
Strangers could not understand what I was saying but my mother could
Clerks mishear our names -Stephanie as Bethany, Sharon as Cheri, Jeff as Jack, Aaron as Harry, Shaun as Shannon.
Strangers misheard my name Alice as Atlas. Oh well, I rather like Atlas
My neighbor called me across the street. I used hand signals to answer and she now
uses hand language to talk to me.
They said “All you have to do is show up and say a few words” but that’s
the hard part.
triggers
My voice is worse when I read out loud
Talking in a room with loud background noise is nearly impossible for me
trying to understand it
When you put your finger in a baby’s palm it by reflex closes its little hand
around your finger. A doctor told me that is what my vocal cords are doing
sensory tricks
I can’t talk but I can shout loud enough to rattle windows
E. How to ask
Source of question ideas
patient reports and clinical studies
_________________________________________________________
F. Question categories
symptoms – pitch, articulation, rhythm, volume, quality of sound
daily activities
coping
sensory tricks
G. – Questions asked
surveys 8, 29
H. Results
vocal cords
8 67 voc cord 14 41 85 4
29 5 vocal cord 16 19 82 3
max no. respondents 67
total questions 60
likely type of dystonia – spasmodic dysphonia
percent of all respondents doing survey 67 of 508 or 13%
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1. diagnosis
-Did you have a throat exam before diagnosis?
78.33% Yes
21.67% No (8- 39)
-Have you had an oscilloscopic voice analysis?
46.55% Yes
53.45% No (8-40)
-Have you had a flexible fiberoptic laryngoscopy?
67.21% Yes
24.59% No
8.20% unsure (8- 41)
2. volume
-Is it hard for others to hear you if there is any other noise in the room?
80.33% Yes that seems to be a problem
13.11% No that is not usually a problem
6.56% unsure (8- 23)
-Does it take great effort to project the words so you can be heard?
48.48% Yes, nearly always
43.94% Yes, sometimes
7.58% No (8 -3)
3. pitch
-As you speak are there changes you didn’t intend in the pitch of your voice?
57.81% Yes, often
31.25%Yes, sometimes
10.94% No (8 – 12)
4. speed of speech
-Is your speech slower than it was before dystonia?
50.79% Yes, usually
26.98% Yes, sometimes
22.22% No (8-15)
5. rhythm of speech, delay, pause, gasp, break
-Is your speech broken up, not smooth?
63.49% Yes, usually
23.81% Yes, sometimes
12.70% No (8-14)
-sound production
40.00% When I speak there is a delay in sound coming out
0% I can only speak well if I inhale
0% I can only speak well if I exhale
60.00% My voice gets worse and better unpredictably
40.00% My voice sounds like I am choking
40.00% My voice is tight with gasps and stammering
60.00% My voice is often trembling
20.00% My voice is good at first and then it gets worse
20.00% My voice is choked at first and then it gets better (29-1)
(low number of respondents to this question)
6. breathiness, air, panting
-Is your speech breathy with extra air production?
42.86% Yes, usually
23.81% Yes but not often
33.33% No (8- 13)
-Does your voice sound panting and short of breath?
24.19% Yes, usually
45.16% Yes, sometimes
30.65% No ( 8- 20)
7. effort to speak, fatigue
-Are you exhausted at the end of the day just from trying to talk?
41.94% Yes, most days
33.87% Yes, but only some days
24.19% No (8- 22)
-speaking situations
20.00% I get light- headed if I speak for a long time
40.00% I have trouble singing
20.00% When I sing the pitch goes flat now
60.00% If I push hard to speak, it makes things worse
20.00% If I push hard to speak, it makes things better (29-3)
(small number of respondents for this question)
8. pain
-Do you have pain when you try to talk?
7.46% Yes, always
26.87% Yes, sometimes
64.18% No (8- 1)
9. clarity of speech- slur
-Is your speech slurred?
4.76% Yes, usually
46.03% Yes, sometimes
49.21% No ( 8- 16)
10. ability to emphasize, stress
-Can you stress words the way you want to?
25.81% Yes, usually
62.90% No, often it is hard to do that
11.29% unsure (8- 19)
11. hoarseness, coughing
-Do you often feel hoarse?
48.39% Yes, often
27.42% Yes, but only once in a while
24.19% No (8- 21)
-Is your coughing still normal?
85.48% Yes
14.52% No (8- 27)
12. tremble, stutter
– Would you describe how you speak as stuttering?
15.87% Yes
84.13% No (8-18)
13. sound change over time as speaking
-Do you speak more easily when first waking?
24.59% Yes, usually
19.67% Yes, but only sometimes
45.90% No there is no difference in my speech in the morning
9.84% unsure (8-29)
-patterns of speech challenges
40.00% My voice is better in the morning
20.00% My voice is better in the evening
0% My voice is better in hot weather
0% My voice is better in cold weather
0% M voice is worse when I am at high elevation, in the mountains
20.00% Time of day does not seem to affect my voice
60.00% Location does not seem to affect my voice
20.00% not applicable ( 29-4)
(small number of respondents to this question)
14. sound production – specific sounds, word forming, enunciation
-Do you have difficulty forming words?
2.99% I have trouble arranging my jaw to form the words
17.91% I have trouble with my tongue to form the words
82.09% I have trouble with my vocal cords to produce the sounds
0% unsure
11.94% not applicable (8- 2)
-Do you have trouble saying letter combinations after p ,f ,t ,s ,d, k or h?
30.30% Yes, nearly always
39.39% Yes, sometimes
30.30% No ( 8- 4)
– Can you easily say “He has half a head of hair?”
58.06% Yes
41.94% No ( 8- 6)
-Can you easily say “Taxi”?
66.67% Yes
33.33% No ( 8-7)
-Can you easily say “The puppy bit the tape”?
65.08% Yes
34.92% No ( 8- 8)
-Can you easily say “We eat eggs every day”?
56.45% Yes
43.55% No ( 8-10)
-Can you easily say “We mow our lawn all year”?
49.21% Yes
50.79% No (8-9)
-Can you easily count aloud from 80 to 90?
46.88% Yes
53.13% No (8-11)
-Can you say a long vowel sound ah and hold it easily?
43.55% Yes
56.45% No (8-17)
-saying your name
20.00% I can easily say my name
40.00% I have trouble even saying the letters to spell my name
60.00% When I struggle to say my name people may think I am nervous
20.00% It is so hard to say my name that I invent another name I can say
more easily to give a pizza order
60.00% People often mistake my name when I say it – eg. Merton for Maureen
20.00% not applicable ( 29-6)
(small number of respondents to this question)
-specific sounds
80.00% My voice breaks when I say ‘eee’
60.00% I can easily say “Jack sat on a tack”
40.00% I can easily say ” Sam wants to be in the army”
20.00% I can easily say “We mow the lawn all year”
40.00% I can easily say “She speaks pleasingly’
40.00% I can easily say “We eat olives every day”
80.00% When I say ‘eighty’ my voices goes into spasm
20.00% I have problems saying d or k
20.00% not applicable(29-2)
(low number of respondents to this question)
15. singing, whistling
-Is your dystonia less if you sing?
36.67% Yes
63.33% No ( 8-32)
-Is your dystonia less after you do singing exercises?
8.33% Yes
28.33% No
48.33% unsure
15.00% not applicable ( 8-37)
-experiences, oddities
0% My voice is clearer when I am scared
25.00% I can still easily whistle
75.00% My laugh still sounds normal
0% If I ever had to call 9-1-1 for emergency, my voice was normal
25.00% My voice is better when I laugh
25.00% My voice is stronger when I am crying
25.00% If I yell at a soccer game, my voice is fine
75.00% I have trouble speaking but can still sing well
0% I have trouble singing but I can speak well ( 29-14)
(low number of respondents to this question)
-singing
20.00% Since dystonia my singing range has changed – eg from soprano to alto
40.00% I can no longer sing along to the radio or to myself for pleasure
0% I can no longer sing in a choir
40.00% When I am reading aloud, it helps if I sing the words
40.00% not applicable ( 29-17)
(low number of respondents to this question)
16. daily activities
-telephone use
75.00% To speak on the phone, I make sure the room is quiet
25.00% It is easier for me to answer “Hello stranger” or “Hey”
or “Good morning” than to say “Hello”
50.00% When I answer people say I sound like I was just running
50.00% On the phone people sometimes think I am crying
50.00% On the phone it works better if I use a lower register voice
0% I ask friends to call me at a time when my voice is better eg. in the morning
75.00% During the covid epidemic, using phone consultations with the
doctor has been particularly difficult
50.00% Every few phone calls I take a deep breath
75.00% I get other people to make phone calls for me when possible
0% I have no problems with phone use. (29-10)
(low number of respondents to this question)
–challenging situations
40.00% When I ask a clerk a question, they often mishear or don’t understand me
40.00% When I ask a clerk a question, they often ask me to speak louder
0% People often tell me to clear my throat
40.00% My voice is better when I practise alone than when someone enters
the room
60.00% My voice is better when I practise than when I get on the phone
60.00% My voice is better when I talk to my pets than when I talk to people
60.00% In a restaurant it is hard for the server to hear me
40.00% At drive- throughs I get someone else to speak for me or pretape and
play my order
20.00% I public I more often communicate with a printed sign or gesture
or text message
40.00% not applicable ( 29-5)
(low number of respondents to this question)
17. education, job
-career challenges
20.00% At group meetings, I have felt so awkward that I invented an excuse
to leave the room for a few minutes
60.00% My job requires public respect, like a teacher, law enforcement officer
and the dystonia hinders this
60.00% I talk a lot for my job and the effort exhausts me
20.00% I use the phone a lot at work and my throat is sore at the end of the dau
60.00% Webinars are difficult for me because of my voice
0% Webinars are good for me because I don’t have to strain to speak
40.00% not applicable ( 29-7)
(low number of respondents to this question)
18. coping- notes, preferred words, preferred message length
-actions you have tried, to cope
0% I write down ahead of time what I want to say
66.67% I plan what to say based on words easiest to pronounce
33.33% I carry a sign that says I have trouble speaking
0% I have a sign on my front door that says I have trouble speaking
66.67% If I speak and stop, I just restart expressively as if I had paused
for thought
66.67% I stop and adjust my breathing more often when I speak
0% My voice is better if I sit tall
0% My voice is better if I am standing
33.33% My voice is stronger if I talk loudly and sound angry
66.67% It helps if I speak from my diaphragm like a stage actor
100.00%I choose hobbies that do not require voice ( 29-11)
(low number of respondents to this question)
19. eating, drinking
-Can you still chew and swallow normally?
88.52% Yes
11.48% No (8- 26)
-Is your dystonia less after drinking a little wine or alcohol?
40.00% Yes, for a brief period the dystonia is less
6.67% Yes, for quite a while the dystonia is less
16.67% No, the dystonia is not changed after wine or alcohol
25.00% unsure
11.67% not applicable ( 8-33)
-Does it help if you drink a sip of water from time to time as you speak?
6.67% Yes, very often
20.00% Yes but only sometimes
50.00% No, water does not change the dystonia
20.00% unsure (8- 36)
-Is it hard to be understood when you make an order at a drive- through restaurant?
46.77% Yes, usually
32.26% Yes, sometimes
9.68% No
11.29% Not applicable (8-25)
-eating, drinking and effects
0% It helps if I eat licorice
0% My voice is better if I just had coffee, tea or chocolate
0% My voice is better if I just had a cold drink with ice in it
0% My voice improves after drinking rum with cinnamon
0% My voice improves after a few sips of beer
50.00% My voice improves after a few sips of wine
0% My voice improves after taking peppermint oil
25.00% My voice improves after drinking alcohol or wine but only
for a few minutes
0% My voice improves after I stopped drinking alcohol
25.00% I have not noticed any effect of food or beverage on my voice
(29-12)
(low number of respondents to this question)
20. sensory tricks – shout, whisper, sleep, touch
-Is your dystonia less if you shout?
40.68% Yes
59.32% No ( 8- 31)
-Is your dystonia less if you speak falsetto?
45.45% Yes
54.55% No ( 8-30)
-Is your dystonia reduced or gone when you whisper?
48.33% Yes, very often
16.67% Yes, but only sometimes
16.67% No
18.33% unsure ( 8 -34)
-Do people tell you that you talk normally when asleep?
3.28% Yes
44.26% No
52.46% unsure (8-28)
-odd tricks
33.33% It helps if I touch my throat as I talk
33.33% My voice is better if I smile as I speak
33.33% My voice is better if I grimace
33.33% My voice is better if I speak in baby talk
66.67% My voice is better if I sing in a fake character voice
66.67% My voice is better if I speak at high pitch, falsetto
100.00% My voice is better if I fake a foreign accent. (29-15)
(low number of respondents to this question)
21. covid
-challenges during covid epidemic
75.00% Wearing a face mask makes it harder for me to speak
75.00% Wearing a face mask makes it harder for me to be heard
75.00% Wearing a face mask makes it harder for me to be understood
25.00% Wearing a face mask is comforting
25.00% not applicable (29-13)
(low number of respondents to this question)
22. public speaking -to one or to a group
-Do others understand you better if you speak slowly and look directly at them?
46.77% Yes that seems to help
17.74% No, that does not seem to help
17.74% Others usually understand me without me slowing down
or looking directly at them
17.74% unsure (8-24)
-Does it help if you speak using a microphone?
35.19% Yes
64.81% No (8-35)
-Do you tell people that you have trouble enunciating and ask them to let you
know if they need you to repeat anything?
31.67% Yes it helps if I tell them that
25.00% No I am too shy to tell them that
20.00% No it does not help even if I tell them that
3.33% unsure
20.00% not applicable (8- 38)
-public speaking before a group
40.00% I avoid public speaking because of dysonia
0% I speak in public when asked because those who asked me love me
0% If I speak at a wedding and sound all choked up that seems fitting and
people will just think I’m into my feelings hard core
20.00% It helps if I use a microphone, even a portable one
0% At the start of my speech I make people laugh by doing odd voices
0% At the start of my speech I tell people I will sound drunk or about to cry
but I am not
20.00% At the start of my speech I tell people so they will know I am not nervous
or sick
0% Before I speak in public I take a few well-timed sips of beer or wine
40.00% Not applicable ( 29-16)
(low number of respondents to this question)
-social challenges
0% My voice sounds like a cartoon character, like the 3 stooges or a frog
66.67% People say my voice sounds hateful, like I am in a bad mood
100.00% When I have trouble speaking, people have treated me like
I am slow -witted
66.67% When I have trouble speaking, people have been patient
and told me not to rush
66.67% When I have trouble speaking, people have told me I should
calm down
100.00% When I have trouble speaking, people interrupt me and rush me
100.00% I often don’t bother to say things I’d like to say just because it
is so hard to speak
33.33% If someone says my voice sounds good today, I feel conflicted
about how to answer (29-8)
(low number of respondents to this question)
-other social challenges
75.00% It is hard to get respect from my kids or colleagues if I want to show
authority and speak oddly
50.00% If people jokingly say it is good to know someone who can’t talk much,
I am hurt
25.00% I like to be in a group so that others can carry some of the conversation
50.00% When I have trouble talking, it is worse if the listener is also
hard of hearing
0% I kind of like the way my voice sounds
75.00% I do not like the way my voice sounds
50.00% To seem more acceptable, I have told people I have laryngitis
0% To seem more acceptable, I have lied and told people I just had surgery
75.00% I sorry that in an emergency I might not be able to easily call for help
0% Sometimes the effort to speak is so great that I break out in a cold sweat
(29-9)
(low number of respondents to this question)
23. treatment
-botulinum toxin injections
20.00% The injections are a bit painful
20.00% The injections are not painful
0% During injections the doctor uses a nasal scope
20.00% After injections I am asked to speak to see the effect
60.00% I have not had injections ( 29-18)
(low number of respondents to this question)
-effect of botulinum toxin injections
0% Injections reduced my voice breathiness
0% Injections helped with my vocal range
50.00% Injections helped with my spasms
0% Injections helped with my hoarseness
50.00% Injections helped with my ability to produce sound
50.00% After injections I could speak better
0% After injections I could sing better
100.00% After injections my voice fluctuated for a while
-hoarse, soft, cartoonish
50.00% Injections did not help me
0% Injections made things worse for me
100.00% The effect of injections wore off within a few months
(low number of respondents to this question)
I. Analysis
nature of the condition
87.30% report their speech is usually or sometimes broken up and not smooth
77.77% report their speech is sometimes or usually slower with dystonia
75.81% report they feel hoarse often or once in a while
69.35% report their speech usually or sometimes sounds like they are panting
66.67% report their speech is breath with extra air usually, or sometimes but not often
62.90% report that it is often hard to stress words the way they want to
50.79% report that their speech is slurred usually or sometimes
pitch
Patients report that not only does dystonia seem to change the desired pitch, but intentional efforts to move to a new pitch sometimes reduce the dystonia.
100.00% report the voice is better if they fake a foreign accent
66.67% report the voice is better if they sing in a fake character voice
60.00% report the voice is better when they talk to their pets
57.81% report that there are changes they did not intend to voice pitch.
50.00% report that on the phone it works better if they use a lower register voice
45.45% – 66.67% report the voice is better if they speak at high pitch, falsetto
33.33% report their voice is better if they speak baby talk
When a person ‘fakes’ a voice, there is likely a mechanical shift in the vocal cords, one that does not trigger the dystonia. Singing and whistling usually require a wider range of pitch than does normal speech.
volume
whispering
65.00% report that their dystonia is very often or sometimes less when they whisper.
normal conversation
92.42% report that it nearly always or sometimes take great effort to produce
words so they can be heard
80.33% report it is hard for others to hear them if there is other noise in the room
40.00% say that a clerk will often ask them to speak loduer
yelling
66.67% report it helps if they speak from the diaphragm like a stage actor
48.68% report it is less if they shout
33.33% report their voice is stronger if they talk loudly and sound angry
33.33% report the voice is better if they smile as they speak
33.33% report the voice is better if they grimace
25.00% report that their voice if fine if they yell at a soccer game
The adjustment made to vocal cords or motor messages to create a whisper versus a yell, may not just be volume but other factors. One might speculate that emotional intensity, sharing a quiet confidence or even playfulness may change the brain messaging..
effort
75.81% report they are exhausted at day’s end from effort to talk, most days
or some days
music, singing, whistling
The relationship with music seems inconsistent as has been noted in other surveys in this series
singing now is harder
40.00% report they have trouble singing
40.00% report they can no longer sing along to the radio
no effect
25.00% report they can still easily whistle
singing now is easy
75.00% report they have trouble speaking but can still sing well
40.00% report when they are reading aloud, it helps to sing the words
36.67% report their dystonia is less if they sing
(A separate examination of music, rhythm and dystonia is found in a later chapter.)
coughing, laughing, crying
85.48% report their coughing is still normal
75.00% say their laugh still sounds normal
50.00% report that on the phone people sometimes think they are crying
25.00% report their voice is stronger when they are crying
chewing, swallowing
88.52% report that chewing and swallowing are still normal. Those with neck dystonia often report problems chewing and swallowing, which may be a secondary area of involvement or based on the need to physically line up the jaw and esophagus to eat. Those with vocal cord dystonia do not seem to have alignment problems.
pain
64.18% report they do not have pain when they try to talk
34.33% report they always or sometimes have pain when they try to talk
It was intended that the questions on vocal cords would be responded to only by those with that diagnosis. However it is possible that some respondents with dystonia did the vocal cord survey just to examine if any aspects applied to them. A more specific question would have been useful to clarify effect only for those with vocal cord dystonia.
change over the course of a day
44.26% report they can speak usually or sometimes more easily just after waking
40.00% say their voice is better in the morning
20.00% that it is better in the evening
This improvement in the morning is consistent with other forms of dystonia and suggests that muscle fatigue or emotional exhaustion are factors.
social function
75.00% report that medical consultations over the telephone have been difficult
60.00% report that webinars are difficult
60.00% report that dystonia hinders getting the respect their job requires
20.00% report feeling awkward at group meetings
To adjust to challenges many patients report having made adjustments.
75.00% say they get others to make phone calls for them when possible
75.00 % try to make sure a room is quiet before they speak on the phone
66.67% stop and adjust breathing more often
66.67% plan ahead what words to say based on ones easiest to pronounce
the effect of wine, beer, alcohol
The survey confirms the effect some experience of vocal cord dystonia being reduced or gone after a few sips of alcohol or wine.
25.00%- 50.00% report that the voice improves after a few sips of wine or alcohll
46.67% report the effect lasts for a brief period or for quite a while
This anomaly has been captured on audio tape by some patients. However it is not clear if the effect is independent of type of liquid lubricating the vocal cords.
26.67% report that it helps to drink a sip of water from time to time as they speak
However some patients report an effect of wine or alcohol even specific to brand.
Beer and alcohol are generally considered to have negative effects on health if there is overconsumption. However clinical studies of drinking in general have found greater production of HDL cholesterol, lower production of LDL cholesterol, lower risk of blood clotting, temporarily a drop in blood pressure and in the excess production of epinephrine or norepinephrine produced during stress. It is not clear if those effects are happening here.
Studies of red wine have found less risk of dementia, and lower risk of getting the common cold. The antioxidants of red wine seem to reduce risk of coronary heart disease and to protect the lining of blood vessels. The ingredient of resveratrol in red wine is poorly understood but may prevent blood vessel damage, reduce LDL cholesterol and prevent blood clots. Patients with multiple sclerosis are sometimes advised to take resveratrol for its health benefits.
The long term effects of drinking however seem unlikely to be the explanation for the odd and nearly immediate effect of sipping wine or beer.
specific sounds
The apparatus of speech involves the tongue, lips, teeth, alveolar ridge behind the top teeth, the hard palate or roof of the mouth, the soft palate father back at the roof of the mouth, and the vocal cords. When people speak their lungs push air up past the vocal cords at the top of the windpipe then through the rest of the vocal tract of throat, mouth and nose.
When vocal cords are stretched tight, they come close together, vibrate rapidly and this vibration produces articulating vowels and voiced consonants. With vocal cord dystonia the vocal cords are either stuck open or stuck closed so vibration is more difficult.
The specific sounds most affected were studied.
Vowel sounds are produced with the airway open and the tongue not touching the teeth. lips or roof of the mouth. They rely on vocal cord vibration. Consonants are formed by obstructing this airway slightly and only some of them require vocal cord vibration.
There are 21 consonants. When they are voiced the vocal cords vibrate
b (back) d( day), n (need) z( zone)
When they are voiceless, the vocal cords do not vibrate
p (pencil), t (wait), s( see), ch(chance) f (safe)
Interference with vocal cord vibration then can hamper much sound production.
One would assume that a dystonia of the vocal cords would not affect those sounds that rely mainly on
throat -guttural – k, g
palatal – hard palate (roof of mouth)j, s
velum, soft palate – roof of mouth – d (door ) t (total
lips, labial – p (plate), b, m (mail), w, f, v
teeth, dental- f.v.
tongue -used in all sounds in English
alveolar ridge, behind top teeth) d, s z, l, n
The questions in the survey were adapted from research studies What sounds presented difficulty included:
-p, f t s d k , h
20.00%- 69.69% report problems with those sounds sometimes or nearly always
-low vowel sound ‘ah’ held
56.45% report they cannot hold this sound easily
-the sound ‘ee”
80.00% report their voice breaks to say this sound
-the word eighty and counting from 80-90
53.13% -80.00% report problems making these sounds
The most common letters used in English are in order e, a, r, I, o, t. n. s, l. c The most common sounds used in English are schwa ( as in “the”) and then n, r, t, s, d l, I, k
People with vocal cord dystonia are challenged in mundane speech utterances like saying ‘hello’ and saying or even spelling most names.
60.00% report others often mistaken their name for another name
40.00% say they have trouble saying the letters to spell their name
20.00% say they can easily say their own name
the mechanics of the vocal distortion
Professional singers are very familiar with changing the voice for effect. Some of what they achieve may be useful to study paralleling what is happening with vocal cord dystonia.
-breathy voice – that some people produce when sick or feeling vulnerable has more
breath to it, and is in a lowered whispered volume.
-low notes – vocal cords become thicker and vibrate more slowly, resulting in what singers call a ‘chest voice’
-high notes – vocal cords stretch out, get thinner and vibrate faster, resulting in what singers call a ‘head voice”
-falsetto voice – (which some with dystonia can create as a sensory trick) the vocal cords are not completely closed and the person sings at the top of their vocal range, or just above their vocal break
-belting out sound (which happens during the yell across the field sensory trick) The vocal cords stretch out, get thinner and vibrate faster on the high notes. However the person intentionally uses the power from the chest that is more common in the lower note voice where vocal cords are thicker and vibrate more slowly
vibrato – a slight wavering of the voice where muscles of the singing voice pull against each other leading to a natural tremor. This effect is sometimes augmented if a person pushes against their abs as if giving themselves CPR (a survey was not done if people with dystonia experience vibrato differently but seems very relevant)
-vocal fry – the vocal cords are very loose and vibrate so slowly a listener can nearly hear the air passing through them. This effect happens naturally when people speak after they first wake up or after a long night. The result is a somewhat creaky, froggy voice in the low vocal register, a growly or raspy sound. (people with dystonia often report that that is their new normal voice)
The fact that vocal cords do not just open or close but also thicken, get thinner and stretch may be useful to study in dystonia. Current research seems to focus more on the opening and closing only.
Lived Experience With Dystonia 