We are pleased to welcome Linda Franklin Hube, MS, CCC-SLP, and
Dot Sowerby as our guest hosts for the SLP chat tonight, Monday,
April 19th, 2004. They will be addressing the topic of Spasmodic Dysphonia.

Linda Franklin Hube is speech-language pathologist at UNC Hospitals in
Chapel Hill, NC.  She is a clinician in the Voice Wellness Clinic and
in Adult Acute Care.  Her interest in speech pathology and voice disorders
grew from her background in singing and from her own voice disorder,
Adductor Spasmodic Dysphonia, which developed in 1989.  Through regular
practice with voice exercises over a number of years, she has improved
her voice quality and vocal comfort markedly.  Ms. Hube has presented
on Spastic Dysphonia from the speech pathology and the patient
perspectives at regional NSDA and World Dystonia Symposiums. 

Dorothy (Dot) B. Sowerby  is the President of the National Spasmodic
Dysphonia Association (NSDA) Board of Directors. She is the author of
"Speechless Living with Spasmodic Dysphonia", the biography of her
experience with SD.  Mrs. Sowerby is a graduate of Hollins University
in Roanoke, Virginia, where she earned her BS degree with a major in
social work and a minor in education.  She founded the Voice Disorder
Support Group in Greensboro, North Carolina, one of the earliest
spasmodic dysphonia support groups in the world with the help of an SD
friend and speech pathologist Margie Cheshire.   Mrs. Sowerby is a
charter board member of the National Spasmodic Dysphonia Association
(NSDA) and board member for 15 years,  serving as president from 2002
to present.

In 1989, members of a local Spasmodic Dysphonia Support Group in
Michigan pioneered a national organization, NSDA, for people living with
spasmodic dysphonia. For years the organization was strictly volunteer-
based and originally focused its efforts on patient education and
support. The mission of the organization is to advance medical research
into the causes of and treatments for spasmodic dysphonia, promoting
physician and public awareness of the disorder, and sponsoring support
groups for patients and their families.  NSDA has funded several
significant research projects and will continue that effort until a
cure is found.

<Robin> Welcome!  We are chatting tonight with Linda Hube, MS, CCC-SLP and Dot Sowerby about
          the topic of Spasmodic Dysphonia.
<LindaHube> Hi everyone
<Robin> Linda and Dot, please define Spasmodic Dysphonia for us.
<LindaHube> Spasmodic dysphonia -- a condition where the laryngeal muscles spasm during vocal
          tasks.  There are two types: Adductor Spasmodic Dysphonia, the more common type, which
          causes the vocal folds to spasm shut, thus cutting off airflow and the voice, and the
          abductor type where the vocal folds spasm open.  Largely, the result is a strained or
          strangled vocal quality, although in the abductor type the spasms abduct, or open the
          vocal folds, resulting in interruptions in the vocal sound with excessive breathiness.
<DotSowerby> Spasmodic Dysphonia, also known as Laryngeal Dystonia, affects muscles that
          control the vocal cords causing speech to waver, to halt, (Adductor) or be reduced to
          a breathless whisper (Abductor). It is a debilitating neurologically-based voice
          disorder that involves involuntary contractions of the muscles that control the vocal
<Robin> Please give us some background about this voice disorder.
<LindaHube> It used to be considered a psychogenic disorder, due to the variations in the
          symptoms of the voice in individuals with these symptoms (The voice would be better at
          some times than at others). Also, stress or emotional upset can make the voice worse
          and that gave reinforcement to the attitude that it was psychogenic.  But these days
          it is largely considered to be neurogenic.
<DotSowerby> Spasmodic dysphonia was first described by L. Traube in 1871 as a spastic form of
          psychogenic hoarseness. It wasn't until the 1950's that it was found to be neurological.
<Robin> Linda, tell us more about the etiology.
<LindaHube> Oh, boy, that's a good one.  That's what everyone would like to know.
<LindaHube> Research is looking into components of the neurology, especially the sensory
          component and the sensory feedback loop.
<LindaHube> Generally, it has been considered to be a disorder involving the basal ganglia,
          but that's just due to the symptoms that are observed in spasmodic dysphonia.  The
          basal ganglia is involved in control of muscle movement, including the vocal muscles. 
          So, it has been assumed that the basal ganglia must be involved.  The verdict is still
          out about the cause.  Dr. Christy Ludlow is studying sensory components.  Her research
          is quite interesting.  My own personal belief is that some individuals are born with
          the "predisposition" to have their neurology affected and that a combination of
          behavior and neurology is involved.  But that is my personal bias.
<DotSowerby> Spasmodic dysphonia is a form of dystonia, the third most common movement disorder
          following Parkinson's disease and tremor, and as with other chronic incurable
          conditions, coping with anxiety and depression may also be part of living with it.
<Robin> Is spasmodic dysphonia more frequently occurring in females?
<DotSowerby> It appears to be more common in women although it may be because men have larger
          vocal cords and are not affected as severely.  Also they may not seek out medical help.
<LindaHube> I believe that most research has shown that females are more likely to have
          spasmodic dysphonia, but I have seen conflicting research on this.  And you have to
          consider other factors, for example, generally women are more likely to see a doctor
          with any medical complaint than men, and a rougher voice is usually more readily
          accepted in a man's voice than in a woman's, perhaps resulting in less social pressure
          to seek a solution.  So there are likely social components involved in this issue. 
          I'm not sure we can rely on the accuracy of the data for this.
<Ela> Does the otolaryngologist make this diagnosis?
<LindaHube> Well, the ENT does the initial exam and often asks the SLP for her/his opinion
          as well.
<LindaHube> Often it's a team effort.
<LindaHube> I think that's the best approach for this difficult disorder.
<Robin> Who else might be on the team?
<LindaHube> Usually it's primarily the ENT and SLP.  In some clinics a psychologist may be
<LindaHube> For Botox treatment, there is often a neurologist as well.
<DotSowerby> It was really my speech pathologist who lead me on the path to the right doctors
          and she offered great support, and worked with me on many speech techniques. I describe
          my voice as sometimes as like a radio station late at night, it fades in and out,
          sometimes you can adjust the dial (speech therapy) and it helps, other times you let it
          be (relax) and it goes back and forth.
<Robin> Please tell us how spasmodic dysphonia presents.
<LindaHube> The initial symptoms of spasmodic dysphonia can be quite interesting.
<LindaHube> Some folks have initial hoarseness which turns into spasmodic dysphonia symptoms.
<LindaHube> Others find that the vocal breaks begin to appear gradually.  Others find that the
          symptoms come and go, then come to stay.
<LindaHube> Occasionally, there are reports of individuals who have the symptoms go away for
          a time before they return again a number of years later.
<DotSowerby>I have had spasmodic dysphonia about 20 years starting when I was about 50 and it
          came on gradually with a slight catching in my voice which I thought was maybe stress
          but suspected that it was more, in addition to spasmodic dysphonia I have a voice
<Robin> How does one make a definitive diagnosis then?
<LindaHube> The team approach with an experienced staff is the best way I'd say.  David Blalock
          at Bowman Grey says that the gold standard is spectrography.
<LindaHube> That's when a voice sample shows vertical striations on a spectrogram.  But an
          experienced ear is also very useful.  And often a differential diagnosis between
          spasmodic dysphonia and some other voice disorder, such as muscle tension dysphonia,
          has to be made.  Viewing the vocal folds on videostroboscopy during vocal tasks can
          help with this in order to rule out other problems, and to possibly observe spasms.
          However, directly viewing the vocal folds is only one component, not the definitive
          measurement tool.
<DotSowerby> Many people go from doctor to doctor and then finally get diagnoses. Some people
          have printed the information from the National Spasmodic Dysphonia Association web page,
          (www.dysphonia.org & www.spasmodic-dysphonia-support.org/) and taken it to their doctor
          who then is able to diagnose!
<Robin> What are the chief complaints of the patient, usually?
<LindaHube> We often look at a number of components, such as vocal hyperfunction, and do a
          differential diagnosis with spasmodic dysphonia.  For example, we look at voiced and
          unvoiced consonant production with reading passages, spectrograms, voice samples,
          videostroboscopy, etc.
<LindaHube> Complaints are often shortness of breath, strained, strangled vocal quality, and
          tightness in the throat or chest along with vocal fatigue and effortful voicing.
<LindaHube> Sounds a lot like other disorders!
<LindaHube> Often you hear that individuals hate speaking on the phone.
<Robin> Dot, what are the chief complaints of people with SD?
<DotSowerby> It is very frustrating not to be able to vocally express yourself, especially on
          the phone. The loss of a reliable, comprehensible speaking voice is often very
          disabling and isolating. It is not uncommon for those with SD to lose employment, be
          forced into changing careers, and/or to withdraw from social interactions.
<LindaHube> My own spasmodic dysphonia, yes I have it too, started with effort during singing,
          then hoarseness after singing, then hoarseness that wouldn't go away even when I didn't
          sing, and then vocal spasms about nine months later.
<Robin> Linda, what did you think was causing your vocal symptoms initially?
<LindaHube> I thought it was poor singing technique.
<LindaHube> I thought it was my fault.
<LindaHube> That attitude delayed me getting any treatment.
<AdrienneFSU> But is spasmodic dysphonia preventable??
<LindaHube> As an SLP I'd have to say no.  But I have my wonders about that, as a "patient".
<Robin> You have a unique perspective, Linda.
<LindaHube> Yes, I surely do.
<LindaHube> I do think that I have a nervous system that appears to be vulnerable to such a
          disorder.  My own grandmother had spasmodic dysphonia (undiagnosed, but the first time
          I heard a patient with spasmodic dysphonia I thought "There's Grandma!"), vocal tremor,
          and essential head tremor.  Three of her eight children have neurological disorders
          too: Multiple Sclerosis, Parkinsons, and Alzheimers.  It is just interesting to me.
<DotSowerby> I thought I was causing the problem from not coping with stress but I suspected it
          was something more. It felt like a loose wire where there was a connection sometimes
          and not others, something I had no control over.
<dave-gross> Linda-There are several computerized voice therapy programs out there-are there
          any of them you suggest/like?
<LindaHube> You know, I have not used them. 
<LindaHube> At UNC Hospitals we usually use the Kay Elemetrics CSL and that gives us what we
<Robin> Linda, we have talked about diagnosis...tell us about treatment of spasmodic dysphonia.
<LindaHube> Certainly, some folks use compensatory strategies.
<LindaHube> Eg., electrolarynx, breathy voice, amplification, etc.
<LindaHube> Treatment has a few options.  Voice therapy, Botox, surgery,....
<LindaHube> Surgery is not reversible, has higher risks, but some folks have been happy with
          the results.
<LindaHube> If one wants the quicker fix, then Botox is probably the way to go.
<LindaHube> Some folks have reservations about the toxin though.
<dave-gross> Does Botox tx need to be repeated?
<LindaHube> Yes, Botox for most individuals needs to be regularly repeated.
<AdrienneFSU> Is Botox administered every 4-6 weeks? Or does it vary with individual?
<LindaHube> It varies.
<DotSowerby> Botox is the treatment of choice and speech therapy with it helps. I have taken
          botox over a 15 year period about twice a year and it was more helpful at first but
          not as much lately plus the tremor does not respond well with botox and they have had
          to increase my dosage. There is some surgery and one is selective laryngeal adductor
          denervation-reinnervation for adductor spasmodic dysphonia.
<AdrienneFSU> Do people do Botox/ voice tx combo?
<LindaHube> And yes, voice tx with Botox is highly recommended.
<LindaHube> Therapy tends to extend the effectiveness of the Botox.
<Ela> Is there a waiting period after Botox before voice therapy should start?
<LindaHube> Therapy is recommended prior to Botox to reduce hyperfunction, and again after
          Botox treatment, once the voice has returned after the initial period of breathiness
          (with some individuals).
<LindaHube> Professional voice users may want to take it more often then non professionals.
<Ela> What therapeutic techniques have you found to be effective?
<dave-gross> What therapy techniques do you find most successful?
<LindaHube> Good breath management, reduction of excessive vocal and respiratory tension, more
          forward vocal resonance and voice placement.
<LindaHube> But some individuals require total compensatory approaches.  Many do well with
          "confidential" or soft voicing.
<AdrienneFSU> Can you describe that "confidential" tx?
<LindaHube> That's a softer vocal quality, almost as if you were speaking confidentially to
          the person beside you.
<LindaHube> Not a whisper though.
<AdrienneFSU> ok
<DotSowerby> Speech therapy has helped me manage my voice better with support breathing
          techniques, getting my voice in mask and higher range plus using expression. I find
          speech pathologists always look me in the eye which is very helpful, listen well and also
          offer emotional support.
AdrienneFSU> What about laryngeal massage?
<LindaHube> Laryneal massage may help with some individuals who have hyperfunction.  But many
          don't find that helpful.
<AdrienneFSU> I see
<Robin> Linda, what strategies worked the best for you?
<LindaHube> Basically, I offer two approaches: compensatory strategies to reduce vocal
          constriction and improve breath management, and direct voice therapy, in which we try
          to actually reduce vocal spasms, if the individual wants to work that hard.  I have
          been doing it for myself for almost 5 years now and the improvement is quite noticeable.
<LindaHube> It requires a huge commitment.
<LindaHube> I still practice every day.
<LindaHube> Good breath management is important.  I really like the Carl Stough approach to
          breathing.  You can find information on that on the internet.
<Ela> How is this done, Linda?
<LindaHube> Ela, the Stough technique targets more coordinated breathing between the inhale
          and the exhale.  There is more information at the website:
<LindaHube> I find that the individual with spasmodic dysphonia usually has terrible breathing
          patterns, often including breath-holding, or if not breath-holding, then tense
          breathing patterns.
<Robin> Linda, what age is typical for onset of spasmodic dysphonia?
<LindaHube> Onset is usually around middle age, 30 - 50 .  For me it was 39.
<Robin> Linda, what else can you tell us about SD?  What is the prognosis for most people?
<LindaHube> Prognosis for complete recovery is very poor.  Of course, a prognosis is based
          on the "typical" outcome known to medicine or researchers.  Any one individual may
          have more or less success in overcoming this difficult disorder.
<LindaHube> Occasionally someone resolves, sometimes after a Botox injection, sometimes after
          voice therapy.
<LindaHube> But generally it's not good.  Our ENT says with usual spasmodic dysphonia treatment,
          we trade one voice disorder for another.
<LindaHube> Example: Botox makes the muscles weak, and usually the voice is breathier.
          Similar results occur with surgeries, as the breathier voice reduces the adductor
          spasmodic dysphonia symptoms.
<DotSowerby> New research and new speech techniques are coming forth. Speech pathologists have
          always been so helpful to me as I have taken speech therapy for spasmodic dysphonia
          off and on for 10 years plus my speech pathologist also helped me start a support group.
          I encourage speech students and speech paths to get involved with support groups. 
<Ela> How are you doing, Linda?
<LindaHube> As with all folks with spasmodic dysphonia, my voice fluctuates, but I've improved
          so much that I OFTEN forget that I have a problem.  Most folks don't notice I have a
          problem anymore, whereas, previously people would ask me, "Do you have a cold?" or
          "Are you upset about something?".
<LindaHube> It's seldom noticed unless I point it out.
<LindaHube> But I no longer sing publicly.
<LindaHube> I still practice everyday and I notice more vocal breaks if I skip days
          without at least doing some humming to refocus my voice.  At times I work more
          intensively on my voice, with the goal of improving my singing voice as well.  The
          singing voice has also improved, but it still isn't up to par.
<LindaHube> My breathing is GREATLY improved however.  For years prior to my spasmodic
          dysphonia symptoms appearing, my breathing was off, it was uncomfortable.  Now it is
          fine.  But I practice breathing coordination periodically.
<LindaHube> I am a real advocate for direct voice therapy.  But it truly is not for everyone.
<Ela> What do you practice every day?
<LindaHube> I always practice the vocal resonance techniques and forward vocal focus is
          essential.  During practice it is fine to be quite nasal.  Actually, initially, even
          my speech was a bit nasal, so that I could keep a very forward focus to reduce vocal
          spasms.  Humming is a great technique for anyone wanting voice improvement.  Lip trills
          are great to increase flexibility.
<LindaHube> Abdominal breathing is great to review.  My theory is that one never breathes too
<DotSowerby>I think Linda has done real well, most people don't have the persistence to keep
          on with speech therapy and go for the quick fix of botox. I find it speech therapy
          gives me more confidence and with this feeling sometimes my voice comes out better.
<Robin> Linda, your training as a singer and an SLP have served you well!
<LindaHube> Yes, I think so too.  I really pay attention to the subtle components of spasmodic
          dysphonia and of voice in general.
<LindaHube> And it takes a lot of insight into the maladaptive behaviors we tend to develop. 
          It takes time to recognize them and more time and practice to change them.
<Robin> That makes you the ideal therapist for treating spasmodic dysphonia...is that the focus
          of your work now?
<LindaHube> Yes, I see mostly individuals with spasmodic dysphonia.  Some other disorders too.
<LindaHube> We have a busy voice clinic, but our director likes what I do with the these folks.
<Robin> Linda, how prevalent is SD?
<LindaHube> According to the National Spasmodic Dysphonia Association (NSDA), spasmodic
          dysphonia affects approximately 50,000 individuals in North America alone.
<LindaHube> Does everyone know about the NSDA?
<LindaHube> The National Spasmodic Dysphonia Association will have (almost) everything you
          ever wanted to know about spasmodic dysphonia. Their website is www.dysphonia.org/nsda
<LindaHube> It will keep you updated.  And Dot is the resource person for that organization.
<DotSowerby> Also from this site, you can order the Speechless book which tells the story of
          what it is like, from the patients view, to have spasmodic dysphonia.
<LindaHube> Also there are regional patient symposiums throughout the country which support
          individuals and professionals on the topic of spasmodic dysphonia.
<Robin> We have been chatting for nearly an hour...are there any more questions for Linda & Dot?
<Robin> Linda & Dot, thank you so much for sharing your expertise and personal insight to
          spasmodic dysphonia.
<LindaHube> You are very welcome.  It's a big subject!
<DotSowerby> I will be glad to answer further questions any time, if you want to contact me by
<Ela> Thank you for that web site and all of your helpful information.
<dave-gross> Thanks Linda & Dot- its been very informative.
<AdrienneFSU> Thanks for sharing your personal experience too!
<LindaHube> It's my pleasure.
<Kathy> Thank you for your information.
<Jessica> Thank you!
<LindaHube> Goodnight.