SLP Who Stutters and Has Spasmodic Dysphonia a Personal Journey

About the presenter: Irene Bullard, MS, CCC/SLP, a severe stutterer developed adductor spasmodic dysphonia and vocal tremors after becoming a speech language pathologist. Irene had a successful 32 year career in home health care working with adults with speech, language and swallowing disorders. In the early 1970's, before going back to school to become an SLP, Irene started a support group in St Louis for people who stutter and was involved in the founding of The National Council of Stutterers which later was incorporated into the National Stuttering Association.

SLP who stutters AND has spasmodic dysphonia: a personal journey

by Irene Bullard
from Missouri, USA

My first introduction to speech therapy for my very severe stutter was when I was in the 6th grade. Our local rural school did not have speech therapy so my parents ended up taking me to a university clinic about 60 miles from home. Although my stuttering was not appreciably diminished following this therapy, it was a very positive life-changing experience. I finally found out what was "wrong" with me. I knew I stuttered but did not know what it was, or why I could not speak as other people do. Some of the mystery was gone. I unloaded some of the shame, guilt and fear that so engulfed my life, but it has taken years and years do it to a almost full extent. I had someone to speak to who finally understood. I learned that I was not the only person in the world who struggled with this uncontrollable force that made it impossible to speak when I was with people but I could speak like everyone else when alone. Stuttering was a vexing mystery to me. I learned what secondary symptoms were and began my quest to look less "freaky" when I stuttered. I learned about avoidance and began facing a few more speaking situations even if I did stutter. Most of all it helped me to become more out going, more social. I have participated in many therapy programs since then for treatment of my stuttering and felt that each one aided me in some way.

I had gone through grade school and high school without hardly ever being expected to talk in class. It always happened that at the beginning of the year the teacher would call on me in class but all I could do was to stutter. I so wanted to be able to recite in class but could not do it. I would then be excused and would sit down and struggle not to cry. I would try to smile but the sad muscles in the corner of my mouth would turn down, I could not control it. I hated the spelling bees that some teachers would have. When I was unable to spell a word orally, I was asked to write it on the blackboard. That hurt so much. I never understood why a person who could speak normally was afraid to give a presentation in class. With improved fluency I finally did understand that.

But then came this "voice thing" at age 35 around 1980. I had been working for 3 years as a speech language pathologist and had recently finished a three week intensive stuttering program, the Hollins Fluency Shaping Program. I recall first noticing it when I was walking down the street and I said a casual hello to someone. I was mouthing the right word but no sound came out, it was just air. This had never happened to me before and it was unlike the stuttering that I had lived with as long as I can remember. Soon I was unable to use the continuous voicing techniques as used in the Fluency Shaping Program. I went back to the clinic to discuss the problem with the speech clinicians with whom I had worked, but none of the therapists at the clinic had an answer. I suddenly felt abandoned. I also thought that maybe because this program did not work with the emotional components of stuttering, I had an emotional reaction exhibited in this voicing problem or whatever it was. I then began having difficulty singing, talking when alone, and when talking to babies or pets. This was different than stuttering. This was the now the first therapy that I felt did not help me in any way but just made it worse.

A year later I began seeing a very well respected SLP and we worked primarily with maintaining voicing. I don't recall really identifying it as a voice problem at that time. But with working on continuous voicing my stuttering became less severe at that time.

Then things started getting a little worse. I began having diaphragmatic spasms when breathing. Word endings often came out without sound. Over the 30 or so years since the voice problem began I have seen neurologists, otolaryngologists (ENT's) and speech language pathologists who specialized in voice and stuttering. In 1990 I had my first experience with an SLP and ENT team using a video stereoscopy to look at my vocal cords as I sustained a vowel. The SLP felt the characteristics of the movement of my vocal cords were consistent with a person who stuttered, the ENT felt it may might be spasmodic dysphonia but was not typical, vocal tremors and diaphragmatic spasms were also noted. I was referred to a neurologist as the ENT thought I might have underlying neurological disorder. This doctor diagnosed me with having essential tremors of the vocal cords and felt my voice was also typical of spasmodic dysphonia and put me on Inderol for essential tremors of my vocal cords. He did not see any underlying neurological disorder. The medication did decrease the shakiness of my voice to some extent and the diaphragmatic spasms were lessened. The ENT suggested that botox injections might help but the thought of loosing my voice and having possible aspiration following the botox injections did not look like something I would want as I was trying to maintain my work as a speech language pathologist. Since there were conflicting opinions in regard to the diagnosis I decided I did not have spasmodic dysphonia. This was the beginning of my denial that I might have had spasmodic dysphonia.

Ten years later I conferred with another SLP and ENT who were working together. I went to see this SLP after hearing him speak at a professional workshop in which he was talking about voice problems. I was impressed with him. Another video stroboscopy was done and after the SLP and ENT conferred they felt it was probably spasmodic dysphonia with tremors and stuttering. Again I was fearful of the Botox treatment. I was referred to another neurologist who identified no other underlying neurologic problem and he too thought I had vocal tremors and spasmodic dysphonia.

In 2009 I decided to try the Botox treatment as I was nearing the end of my career and I admitted to myself that I probably did really have spasmodic dysphonia and it was worth a try. Also I became less concerned about missing days at work if I did loose my voice. I called the SLP and told him I was ready to try botox. I was told the doctor was having a botox clinic the next day and could I come in. I was not ready for such a treatment so soon, but I agreed to go. First I was given an injection in only one vocal cord. It showed almost immediate improvement. I went back soon afterwards for an injection in the other vocal cord. This time I lost my voice and was unable to work for two weeks. As the treatment took effect I found it difficult to adjust to the changes in my voice as my voice changed. I had to make adjustments in use of the controls that helped me control my stuttering and produce the best speech that I could.

When my voice did come back I began to realize how much easier speaking was with the benefits of botox. Both my voice symptoms and my stuttering were lessened as sustaining voicing became a little easier.

I have found that using diaphragmatic breathing is the foundation on which to build control. But, that is difficult to maintain when anxious. I have also learned ways to decrease shoulder and neck tension which decreases vocal tension. At times nothing seems to work and I wonder if it is time for another injection. That often seems to be the right time.

Being an SLP may have made it easier to deal with the concoction of speech disorders as I was aware of many techniques to control voice and stuttering. Also I became aware of the best people in the St. Louis area, where I lived, to help me with these problems. On the other hand, being an SLP put a lot of pressure on me to speak as clearly as possible. I adopted a slow rate of speech in order to be more fluent. I worked with adults in home care for over 30 years. At times, patients or their families expressed that they felt I would understand their struggles better and saw me as a role model. I often used the idea that you do not have to be a good speaker to be a good communicator. I truly believe this. At other times there were people who did not think that I could help them if I could not speak well myself. The families of the patient were more critical than were the patients. I somehow connected with the patients well. I retired a few months before becoming 65 as my daughter became seriously ill and I felt she needed my help, but I also knew that dealing with my speech and the increasing demands of the job fully exhausted me. It was time. I had fought the demons and was successful.

When asked to partake in this conference I was told that I have a unique story, that I had an important story to tell. Having SD and stuttering and vocal tremors simultaneously has been a challenge. In some ways having had to cope with my severe stuttering may have made coping with the onset of SD a little easier as I had learned so many coping strategies earlier in my life, especially the emotional coping mechanisms.

As a child with such a severe stutter I felt like I was bursting with the desire to be able to talk, to express my thoughts, to communicate. As an adult I have slowly become a person who can talk. In fact I have upon rare occasions been told I talk too much. I have found my voice, imperfect as it is. I do believe that there are people who do dismiss me because of my imperfect speech but I hardly notice as I have learned in early adulthood that these people often are not the people with whom I want to be involved or they just do not understand.

Strange as it may seem, I recall few instances of people making fun of my speech, and usually it is through ignorance. I always enjoy little children who ask, "Why do you talk like that?" or who imitate my repetitions. The children's parents are often very apologetic but I try to turn it into a teaching moment and explain that I do have a problem speaking and that I stutter. These young children are merely showing their curiosity or doing what young children do as they learn, imitating what they hear.

I do not recall my 8 brothers and sisters ever making fun of me, but I am sure that if they did my parents would not have tolerated it. My mother used to say that God does not give you more than you can handle. In my adult reasoning, I cannot always believe this, but in my heart this has gotten me through many difficult situations and periods of time. My parents were not complainers, but as farmers they demonstrated that even when there were droughts and floods we would be able to endure. A bad growing season on the farm was a problem, yes, but not an insurmountable obstacle. Although not perfect parents, parents who did not know how to handle my stuttering situation, they gave me a strong foundation on which to build.

Now being retired, I am proud of the obstacles that I have overcome. I have faced the challenges and have overcome them. My voice, my fluency will never be perfect but I have learned that communication does not have to be perfect to be good.