Jeff Grosser

As early as the fifth grade, Jeff Grosser realized that singing would be an important part of his identity. From his early experience in the school chorus through years as a professional singer, he knew “music would be a compelling and determining directive in my life.” What he did not know was that SD would also become a directive in his life, attacking both his singing and his speaking voice.

For 12 years, from the age of 26 through 38, Jeff essentially made his living by playing guitar and singing in nightclubs and colleges in his area. He also directed an adult and children’s church choir and began a piano-servicing business. He recalls weekends when he would get home at 4:30 a.m. and get up again at 7 and go to church. In 1986, while warming up to sing at a wedding, he found he couldn’t “loosen the upper range of my voice. I struggled to gain control in the high notes.” In the weeks that followed, after treatment for “acute laryngitis” and resting his voice, he continued to sing but the problem was getting worse. “Now”, he reports, “it had crept into my speaking voice, manifested by a hoarse jerky quality that slowly became more insidiously debilitating.”

Like many people with SD, Jeff searched for answers as well as treatment. He found the path from symptoms to accurate diagnosis and successful treatment a difficult one. He worked with speech pathologists in Illinois, California, and Texas and, while he was given encouragement, his voice was not sufficiently improved.

A speech pathologist back in the area of his home town first suggested that he might have SD and gave Jeff literature to read about it. Very soon he was convinced that this was indeed his condition. His ENT confirmed the diagnosis—adductor SD—and gave him his first treatment.

While his speaking voice responded to treatment, he realized he still needed to find a way to rebuild his singing voice. He finally made significant progress working with a singing coach in a neighboring city. Although Jeff does not feel he can sing as well as he would like, he says, “My overall voice quality has improved enough that I can function without too much difficulty in most situations.” In stressful situations he concentrates on voice techniques to overcome symptoms. He reports, “This has taken innumerable hours of practice to recognize and make useful the proper focus and position of the voice.”

Recalling his own arduous search for information and improvement and realizing that there might be other people experiencing new voice difficulties, he helped organize the first SD support group in Illinois. This past summer he joined the other members of the SD Support Group of Chicago to celebrate the group’s 10th anniversary. Jeff believes that such a group can be a “lifeline.”

Not only is Jeff active in his own group, but he is also working closely with the NSDA as a Midwest Co-Regional Leader. He recently journeyed to another part of his state to assist a small gathering of people who were trying to start a new SD support group. He says, “It is through our interaction with each other that we can cope with the problems of our common disorder as well as provide information and support to new members who come to us asking, ‘What’s wrong with my voice?’”

Theresa Franks

Theresa Franks, like many others with SD, feels some discomfort in talking about her own specific voice difficulties. She frankly admits that, “I still have this part of me that is embarrassed and ashamed to tell everyone. I would rather have them think I am just nervous rather than have a serious handicap. I would like to be more open about it.” Her willingness to have her story told here proves that she is becoming more open.

From the start of her voice problem when she was a teenager to the firm abductor SD diagnosis at age 42, she has listened to varying opinions and comments from family and friends and the medical community. She has revised her own labeling of her condition. When she was a schoolgirl, she recalls, “I labeled myself a nervous person with a public speaking phobia. I felt it was sort of a secret because I would cover up and avoid public situations as much as possible.” Later, when she became a working woman, wife, and mother, she says, “I then labeled my voice as my ‘imperfect voice.’”

This year, while admitting that her voice problem might be appropriately considered a “handicap,” she explains, “I still want to think of my voice as my imperfection.” Labels aside, Theresa is leading a successful life, currently as saleswoman/advisor for beauty products, after previously working seven years as a chiropractic assistant.

Responding well to treatment and being buoyed by a supportive family, Theresa recently wrote a long article entitled, “My Life Story Regarding SD/AB.” She has shared this with people via e-mail and internet, describing her “years of uncertainty” and hoping to “encourage some other person who may be going through a similar situation. This e-mail and Internet is so wonderful. It is a life-saver to be able to share such a situation as SD with other real people who truly understand.”

While some of us with SD have been fortunate enough to achieve a fairly rapid diagnosis and treatment, Theresa’s long search for answers mirrors the experience of many others among us. She had visited many doctors and undergone innumerable tests. A turning point in her life was a visit to a speech therapist who was head of a rehabilitation unit at a large hospital where she also treated people who had had stokes or accidents which affected their speech.

After completing some tests, the specialist told Theresa she suspected SD and gave her a copy of the NSDA newsletter. Theresa ordered the video What is Spasmodic Dysphonia? to share with her family. The speech therapist also showed her some relaxation techniques and helped her to “accept myself as I was and just continue to go on with courage.” Not too long afterward she found a doctor who specialized in treating SD patients and confirmed her diagnosis and began treatment. Theresa also ordered a copy of NSDA’s 1999 book, Speechless: Living with Spasmodic Dysphonia and felt the stories featured in the book could have come from her own diary. “[The stories in Speechless] have given me the inspiration to write about my own story and the courage to live.”

As part of her coping strategies, Theresa hopes someday to get a phone amplifier and a personal microphone.

Theresa also volunteered a compliment for the NSDA newsletter, saying she looks forward to every issue. “It makes me feel connected, but most of all it gives me hope and comfort.” She concludes her story with, “Here’s to the cure for SD!”

Cheryl Morgan

Cheryl Morgan calls her life with SD a “spiritual journey.” In her 19 years as a respiratory therapist, she has experienced both insensitivity and understanding toward her SD and can recall her own mixed emotions of frustration, resentment, acceptance, and compassion.

She says, “Having spasmodic dysphonia is never easy, and I so much want to reach out to other SD’s to give support and understanding. Part of me wants to be recognized by my peers with SD as someone who wouldn’t give up no matter how tough things got, and who can now stand up with my arms in the air and shout, ‘Hey! Look at me. I’m still around, and I’ve accomplished my goals! All of you with SD can, too!’”

Cheryl’s voice difficulties had a dramatic beginning. “I was 34 years old when I woke up with no speech,” she says. She goes on to reflect that, “It seemed very sudden but, looking back, I realize my voice had been becoming weaker for a number of years.” Her voice became at times “severely strangulated,” and she began wearing a headband microphone and amplifier (as well as using a weak-voice-receiver for her work phone). Certainly these devices helped her cope, but it took a while for her to accept the continual comments about these vocal aides and about her inexplicable voice. She had to adjust her self-image and accept, but not be defined by, her bewildering voice. It took eight years to get a diagnosis (adductor SD) in 1995 after visits to many physicians. What a relief! “You can handle anything as long as you know what it is,” she comments. She began treatment and was pleased with the results, saying, “I feel I have my life back most of the time.”

Communicating with others via e-mail has helped her in rebuilding relationships. She mentions also her “wonderful” Connecticut Support Group. “We are all friends who try to help each other in any way we can by listening to each other, sharing coping tricks, sharing successes and frustrations. We genuinely care about each other and how we are doing on a day-to-day basis.” She feels that people who have been successfully treated can help new patients. She feels the SD Internet chat group also is important. “It’s a good place to share and receive information and to joke around, too—which makes the SD burden a little easier.”

In addition to medical treatment, her own coping includes such diverse elements as prayer, T’ai Chi, chiropractic adjustments, and a supportive and understanding husband. She mentions also “being up front about my SD and my limitations.... it diffuses the discomfort. I realize I need to be the one to teach others about SD by my example. Once people get used to how I cope, they accept this as part of me.” It helps when people invite her to social events, saying, “Just come! You don’t have to talk.” She has learned the importance of listening to people with “silent regard, a gentle touch, empathizing.” Cheryl has noticed that “when people need support for some painful situation, they seem to want to come to me because they trust me. The positive impact our listening can have on others is infinite”.

Cheryl is now Pulmonary Laboratory Coordinator at her hospital and, in addition to working a 40-hour week, expects to finish work on her master’s degree this spring. Sometime in the future she hopes to attend a regional SD Symposium. She is a generous supporter of NSDA and recently rode in a 24-mile bike ride to help raise money for cancer. Her life speaks out.

Diane Piselli

Diane Piselli was diagnosed with aBductor SD with tremor in October, 1999, and is still in the early stages of diagnosis and treatment. It is ironic that her strained voice gives her moments when she feels disabled because her life's work is devoted to people with disabilities. Her voice problems began when she was 15, and, by chance, twenty years later, she stumbled onto the words pasmodic Dysphonia on the Internet. Further web research led her to the NSDA, the E-mail group, and the SD chat room. Armed with information, she visited a knowledgeable physician and finally had a name for her voice difficulty. She shed "tears of joy." Although trained as a special education teacher, for the past 12 years Dianr has been the Director of the Playground for All Children, a large facility designed for children with disabilities. In addition, she has implemented a Pet Therapy program in which therapy dogs visit not only the playground but also hospitals and nursing homes, "for the purposes of sharing love and attention to a population desperately in need of hands-on affection. The smiles on their faces have kept me going even when my voice didn't work." This pet therapy program was profiled in a TV documentary on the ,i>Discovery Channel. Diane is the proud person of five wonderful Registered Therapy/Certified Service Dogs. She dislikes the fact that her voice and arm tremors give the appearance of nervousness, and that she is teased about being the "Voice from Beyond." Her job is semi-secure since she was certified as a person with a disability after contacting the Office of Equal Opportunity and checking provisions of the Americans with Disabilities Act of 1990. Her duties may or may not be changed. "I am a stubborn individual with a mission," she says, "to provide quality programming to people who would not otherwise experience that opportunity. That keeps me going."

Nina Dikin

Nina Dikin probably deserves a red apple as well as a merit award. In spite of 20 years with aDductor SD, she recently earned her degree in education and has become a first grade teacher. “A big success for me,” she says, “was my recent teacher's evaluation by my boss – nothing but support for my efforts and no mention of my voice in any way! I was sure he's aware that I sometimes have problems and knows I use a microphone, but it has not been an issue at all.” This successful career change followed “10 to 15 years in deep frustration, being a secretary who could hardly answer the phone.” For a long time she was a medical transcriptionist. She felt trapped and in a rut and felt her life was on “hold” until she could fix her voice. Her husband suggested she consider that her voice would never be “fixed,” and urged her to engage in all kinds of activities in spite of her voice concern. A teacher himself, he encouraged Nina to become one. Her goal was Special Education, and she first conducted classes for severely disabled adults. Then she was asked to apply as a “regular” teacher for first grade. In her classroom she sometimes uses a microphone, which she calls her “security blanket.” Nina also uses her hands alot. She has diligently practiced voice exercises, and sometimes when on break, she'll walk around humming. Nina has “become very good at picking my words carefully and not talking when I don't have to.” She now realizes, “I don't have to prove my intelligence or competence through fluent speech patterns.”

Kathy Ketcham

Kathy Ketcham's emphasis is also on writing instead of speaking in living with aDductor SD. Her written words far outweigh any speaking imperfections. She can remember her first humiliating voice problems when she was in junior high school. An extrovert and admittedly “a natural ham,” it was hard to have her words mysteriously catch in her throat as if she were choking on them. She didn't want to be labeled “nervous.” How could she give up acting in plays and singing solos with choir? But now, three decades later, she can reflect on being the published author of ten nonfiction books. Her first job after college was in a large office building with 40 to 50 people. Combating the noise, her voice was often strangled and choked, but at that time Kathy had no choice but to assume her voice problem was probably psychological. In her late 20s, she decided to pursue a writing career. Thinking she might have a phobia about public speaking, she wrote a magazine article abut phobia. After a few years she received a contract for writing her first book. It wasn't until Kathy was 42 that she read about her first reference to SD. That was a pivotal moment. She found more information, treatment, and support, and she still remembers a message a doctor left on her answering machine, “The bottom line is don't give up. There is a safe and effective therapy and people shouldn't be struggling to speak.” Although she loved the silence and serenity of writing, she did have to cope with book tours, phone calls, and lunch meetings with her co-authors and publisher. After one panic-stricken restaurant experience, she made a firm decision to insist on finding a “quiet place to eat.” Kathy now looks at SD as “a strange sort of blessing.

I have a special understanding of people who suffer from all kinds of disabilities. I believe, too, that my voice disorder has taught me to be a good listener.”

Terry Tomlison

Terry Tomlison has been facing a similar dilemma, how to continues as a public speaker with an undependable whispery voice. He is a minister and also suffers from the more rare aBductor form of SD. Terry was 34 and employed as minister of music in a large Midwestern city when he began to experience voice problems. “When first diagnosed with SD in 1995, it was devastating,” he admits. He reached the point of almost not being able to speak at all. Terry also reports the “most affirming thing” ever said to him, at a time when he was a senior pastor for a parish of four churches. He offered to resign, so they could have a pastor with a voice, but, he says, “My churches jointly responded by telling me ‘We would rather have you at a whisper than anyone else.’” He recalls his “most fearsome tasks” such as preaching, counseling, conversations in large rooms full of people, having to make phone calls, as tasks of “adventures.” “People who don't know me well don't think I can do it. When I succeed, I get confidence-building feedback.” Terry has not let SD ruin his life; in a sense, he has embraced it. He became not only the leader of a support group, but also a regional director for support groups in seven states. He edits a newsletter filled with personal stories, updates on SD research and developments, and tips for everyday coping such as drinking a lot of water and carrying grapes to “avoid cottonmouth.” Terry uses his sense of humor, not only in the newsletters but in his own life. Often he has reminded people that “we often sound better to others than to ourselves” and that “It's not how you sound but what you have to say that matters.” Personally Terry tries to make full use of his diaphragm when speaking and to keep his pitch up. He recommends the use of imagery… imagine words as water flowing off the tongue as a soft babbling brooks…but says, with his self-deprecating humor, that perhaps as a minister he “babbles” too much.
This spring he is not serving as a minister but is doing something he has always wanted to do — writing professionally. Working with a representative of his state's Vocational Rehabilation, he is writing a book about people with disabilities and the need for improvement in the assistance offered to such people. He is still a voice to be heard.

David Byrd

David Byrd developed SD when he was 31 and was diagnosed within a year with the aBductor type. What an obstacle this was, especially for someone anticipating a life filled with public speaking! He credits a speech therapist for providing him with SD information which led him to an otolaryngologist.

The exciting part of David's story is his getting over this hurdle; he has, in effect, climbed over his voice. In 1994, David was elected District Court Judge in a four-county district, winning over two opponents with normal voices. Soon he was holding criminal and civil court all over the district in front of hundreds of people every week. He commented, “Although it can be quite difficult, I refuse to let SD hinder my vocation.” This positive attitude is revealed in other aspects of his coping: he has sought and read about medical treatments, both customary and experimental, has corresponded with other persons with aB SD, and has become a popular visitor to the SD Internet chat room. His voice has not returned to it pre-SD norm, but he continues to be an active speaker, even appearing on local television and radio. David feels he is doing “the best to live as normal as I am able given the circumstances.” He reports that he has found nothing helpful in “sensory tricks” except for good breath support.
When contacted this spring, David commented, “I am still performing my duties as a district judge and am still speaking in churches and at political and civic events. My voice is certainly not what I want it to be, and perhaps never will be. Most everyone knows my voice and knows that I have SD, but I am still asked to speak fairly often.”