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Elizabeth is invited to attend the 2009 NSDA Symposium in Charlotte, NC, on April 4 to accept her award for this contest. We thank all who participated and voted in this contest! Share Your Story Top 5 Winners
We thank all the authors who submitted their story:
My Life with Spasmodic Dysphonia From the time I was an infant my life was music. My mother sang when I was tucked into bed, she sang or whistled during the day while she worked around the house, and I was singing with her as soon as I found my voice. I sang as I grew up-in Sunday school, in church, in school, and then I started playing the viola. I ended up majoring in music, singing in any group that was available and playing in orchestras. My husband was in the army and we traveled to Africa and to Belgium and I sang or played wherever we lived. When we retired, I taught elementary school music. While singing in a madrigal group, I had the first signs of Spasmodic Dysphonia-and that was the last time I was able to sing. Suddenly my life seemed to be one without music, but I had the opportunity to help form a community orchestra, and continued with my music with a different voice. About that time, my grandchildren began to arrive-I ended up with five grandsons and a granddaughter, but I couldn’t sing the songs that my children had heard and it nearly broke my heart, but I could play the songs and still share with them. I missed teaching, but was the assistant conductor of a youth orchestra, and found that my voice was not the handicap that I expected it to be. I was hesitant to take control of a rehearsal at first, but one day found myself in front of the orchestra with no backup conductor. I got the attention of the group and simply said that I had a voice problem, but if they were quiet I would do the best I could. They were wonderful, they listened carefully and we managed just fine. I even started a training orchestra of less experienced players. I had a new way of making music, and it was very satisfying. My husband and I had a store about this time, and I would help at the counter. I had customers react to my voice as though I was mentally retarded, deaf or mute. One person said “Tell her that I said” while I was standing right there, others would call back to my husband for help rather than having me wait on them. Most of the people were patient and very understanding. I suddenly realized how it feels to be different from other people, and since that time I have gone out of my way to react in a positive way when I am with someone who is handicapped in any manner. I have learned that if I have a positive attitude about myself, my voice is not nearly the problem that it could be. I volunteer at our local visitor’s center and manage to communicate just fine. When I meet someone new, I may say that I have a voice problem, but I don’t let it become an obstacle. I have learned a great deal from our support group, although I can’t attend often. It helps to realize that other people are coping with the same problems. Arthritis has made it difficult for me to play the viola anymore, but my daughter decided that I should learn to play the hammered dulcimer so, at the age of 75, I started playing a new instrument. I have met some other women who have dulcimers sitting in their closets, because they don’t know how to play them, so I am trying to get a small group of women together so that we can learn together. In the meantime, I am enjoying the challenge of learning a new instrument and am sharing this with everyone that I can. back to top Elizabeth J. Bachini Thanksgiving 2004 is the last time I remember having a normal voice. My family and I had just eaten, and my father sat down at the piano, calling for me to sing while he played. It was my senior year at Holy Cross, and I faced a daunting honors thesis and workload. A long-time vocalist, I did not have time for singing anymore. That Thanksgiving, however, I enjoyed a brief return to music, and my voice was sweet and clear. My throat got sore that winter, and its hoarseness persisted. My voice soon morphed into something beyond hoarseness, something strange and inexplicable. An avid participant in class, I found my teachers and peers commenting on the perplexing, persistent “scratchiness” of my voice. Not only could I no longer sing, I was lucky to get through a sentence without my voice shaking and cracking. I was diagnosed with SD shortly thereafter. I chose to ignore it. Some days were better than others, so I often thought it would disappear or I would simply muddle through. I finished my thesis and presented it publicly, even despite my voice. I dated, graduated, partied, and landed a job like many other twenty-two year-olds, even despite my voice. I explained my vocal problems to my friends with a sense of casualness, never fully disclosing the extent to which the loss of my normal voice began to erode my confidence and sense of self. Hoping to pursue a career in law, I worked as a paralegal at a Boston litigation firm. I quickly recognized my voice was a serious impediment there. Frustrated, I started Botox injections and rethought my legal aspirations, yet I also began to realize the capacity of my own inner strength. I will never forget one conversation with a partner at my firm, a woman I very much admired. One evening, she asked me bluntly, “What is the deal with your voice?” I proceeded to tell her about having SD. This esteemed veteran of Boston’s legal world then expressed her admiration for a strength I had not yet realized I possessed. “To have something like this at your age, and you just keep going,” she said. Since then, I have led my life to prove her statement true, to become the “survivor” she described. I have kept going. I did not go to law school, but I did not surrender my ambitions. In fact, because of SD, I approached career decisions far more thoughtfully than I would have otherwise. I reflected on some humanitarian work I did in Africa, and reaffirmed the importance of my ability to research and write. I thus went back to academia to concentrate on U.S-African affairs at Georgetown. I wanted to write about a topic that meant something to me, about the consequences of history and the potential of positive change. My life has been rich since I lost my voice. I fell in love, fell out of love, relocated, and got my Masters. I have left classes humiliated by my peers’ winces at the sound of my voice; and I have walked back in, raised my hand, and participated anyway. I have struggled in job interviews; and I have earned the respect of influential academics and Washington professionals alike with my ability to write, my passion for my field, and even my ability to communicate well with others in spite of my vocal imperfections. I have bouts of profound sadness over this condition; and I have bouts of profound appreciation for the fact that I understand the importance of health and tenacity in a way many young people do not. Now twenty-five, I look at the next several decades of my professional life with more optimism than fear. It is a professional life that I still approach with great ambition. I do miss singing. Often, I will hear a great song and open my mouth to sing, and then abruptly realize I cannot project sound as I once did. My dad often forgets too. He still provokes me to sing, and I have to remind him that I no longer can. I suppose that is the small sacrifice I will have to make for finding a strength I did not know existed within me. It is a strength I sometimes wish I did not have to summon, but one which sustains me and pushes me ever forward. back to top Shelly Barnes I was diagnosed with Adductor Spasmodic Dysphonia in the spring of this year. I had been struggling with sounding different for at least two to three years prior to my diagnosis. My sister would ask me if I was crying when I talked to her on the phone. The quality of my voice deteriorated to the point that ordering coffee at a drive thru window was nearly impossible due to the breaks and strain in my voice. I finally came to the conclusion that I had to actively seek some kind of treatment when I began working in the court system under the direction of the Chief District Court Judge. My job involves improving outcomes for children in foster care by implementing training of stakeholders in the process, as well as constant interaction with lawyers and judges. I knew that if I constantly sounded like I had stage fright, it was going to severely impact on my work performance and effectiveness in my job. I now undergo Botox injections. While I have achieved some good results, I remain breathy and my voice is very soft for several weeks after treatment. I am working with my doctor to shorten the side effects but still maintain a reasonable period of good voice quality. Thank God there is a treatment option. But I would like a cure. Few people understand how frustrating this disorder is, including my own family. I recently was treated with exceptional rudeness at a major chain of coffee shops and I am working to get the behavior changed. I was told when I drove up to the window with a written order and cash for my order, I was holding others in the drive thru line up and being inconsiderate. I was really embarrassed to have to verbally explain this to the clerk at this particular store, and it was obvious that I would not have been heard. So, now I am advocating with upper management that a sign be placed somewhere that special assistance will be offered for those who have speech and/or hearing problems at the window itself. Until there is a cure, I will continue to advocate for those of us who must struggle to be heard. Maybe I will have an impact for others of us who have multiple disorders like coffee addiction and spasmodic dysphonia (smile). back to top Linda Barnette Instead of writing an essay about my experience with AB Spasmodic Dysphonia, I have written a poem. For many years I was an English teacher. During the last few years of teaching, I had difficulty communicating but persevered. When I retired in 2003, I ran successfully for a seat on the local Board of Education. The poem shows my feelings about what I can contribute to the children in spite of my severe case of SD. A Voice Found On the surface I am a person without a voice, straining to speak, to communicate, to get people's attention. It would be easier to retreat into the silence, but I have a mission in this world which fate will not ignore. Though the physical is only a whisper, my spiritual voice is strong. It speaks for the weak, the disabled, the gifted. for all the children. IN ITS SILENCE IS ITS STRENGTH as it shouts for justice and equality for all. It is a voice found, a voice for all the people. back to top Bernadine Barrow SD and Me My story began the summer I turned 14, when, following a routine tonsillectomy, I could no longer speak normally. I was left with this weak, shaky, crackey voice and nobody could explain why. I returned to my doctor who had no answers or treatment; it was dismissed as “my imagination” or “nervousness”, and that was pretty much that. Of course, two or three months earlier, when I auditioned for our high school drama club and was accepted, I didn’t have this problem. Why, all of a sudden, now? What had happened? The year was 1951 – Spasmodic Dysphonia hadn’t been heard of yet, let alone Botox injections. I spent the next four years of high school living with my “funny” voice, struggling to be heard, never quite knowing what would come out when I tried to speak. Fortunately, I went to a relatively small school, was well respected by my peers, excelled at my studies and was popular. Needless to say, I didn’t get any leading rolls in drama club, but every now and then I had a line or two. I was a very good pianist, so I provided all the background music and accompaniment, which kept me involved enough that I was able to earn my membership in Thespians, just like all my friends. I graduated at the top of my class and gave the valedictory speech to my 163 classmates, the faculty and all our families and friends in my weak, strangled voice. I made it!!! I had done well, in spite of my “funny” voice, and this was only the beginning!! On to college, where, once again I enjoyed popularity, many new friends, did well academically, was invited to join a sorority and all was well. Dealing with SD continued to be an issue, but I continued to rise to the challenges as necessary. I assumed leadership roles in the School of Home Economics (my field of study) and in my sorority. I dated, met the man I was to marry, graduated, got a job, got a good job and lived a happy life just like “normal” people did. No one ever seemed bothered by my voice, except me. When I asked family or friends how they tolerated my irritating voice, the usual response was that they hardly noticed – my voice was “me.” I went on with my life, raised my children, participated in all the usual community activities, entertained frequently, etc. I’m a naturally gregarious person, so I never shied away from social situations. I continued to be active as an alumna in my sorority, again accepting a leadership role, representing the fraternity in many situations that required speaking before a group or talking one-on-one with strangers. I obtained a Real Estate license and worked in that field for several years, in spite of the fact that telephone conversation was frequent and, as with all SD sufferers, extremely difficult. I never thought about SD causing me to live my life “more boldly,” I just did what I had to do to compete. Probably because I was stricken with this disorder at such a young age, I tolerated it better than those for whom it came on later. It was all I knew and I dealt with it. It never occurred to me to not participate just because it was difficult. About six years ago, either my SD was worsening or I was becoming weary of coping. In either case, I decided to finally seek treatment. I saw Dr. Berke at UCLA and received my first Botox injections. Within a day I was speaking in a breathy whisper, which lasted much longer than I had expected - nearly six weeks. However, when my voice did return it was a miracle!! No more cracking – I sounded normal!! I could not believe my own ears. It was like being born again!! My self-confidence, which had been seriously waning, soared. Life was a little easier. About two years into my treatments, I discovered an SD support group in my area. What an amazing experience to attend my first meeting and find others who sounded just like me and who understood the trials and tribulations of living with SD. This group continues to be a mainstay of my existence and I love them dearly. Life is full of challenges and choices – that’s what living is all about. It’s how we handle these trials that makes the difference – do we react or respond? One’s answer is what separates the winners from the losers. back to top Elly Bath Today, I turn back the clock…..It is 22nd of April 1999. My partner I and leave Australia for a journey of a lifetime. A trip around the world! I will never forget this most spectacular experience. I was 45 at the time and had just sold my bridal boutique. I wanted to see the world while young and fit enough to do so. The adventure began in San Francisco, next the Canadian Rockies, then New Orleans, Miami, the list goes on. My partner and I were greedy for adventure and managed to fulfill ten months with so many memorable occasions. We hiked when ever we had the chance. I still see the most awesome full moon rising. We were camped on the side of a hill. It was our last night on the Inca Trail, to Machu Picchu in Peru. Another perfect picture was the sun twinkling off the virgin snow as we hiked to Torres Del Pane in southern Chile. We had six fabulous months travelling through South America and another three months touring through Europe. Seeing the Egyptian pyramids was a dream come true, but that December I was beckoned home for the birth of my 3rd grandchild. No way would I miss this for the world. The nomadic lifestyle had to come to an end. While settling back into life, I decided to stay away from fashion for a while. Latin dance teaching fulfilled my evenings and my days were spent helping a friend renovate his house. I had all my own power tools as home renovating was a hobby of mine. It was at that time, I had an accident with my circular saw and big chunk was taken out of my knee. Ouch! Do as I say not as I do. Two weeks later, I fell down a flight of stairs and hit my head. It was not long after that the coughing and chocking began. Here it comes… the dreaded SPASMODIC DYSPHONIA. Friends were asking: “Have you had a stroke or something?” “Why are you crying?” “Do you have laryngitis?” “What is the matter with you?” “Are you sick?” “Listen! I don’t know I might have caught tuberculosis in South America or something.” Voice therapy was so frustrating. That’s when I decided to go to the snowy mountains for the first time alone. I loved to snowboard and thought I wouldn’t have to speak to anyone. That weekend I cried a lot. I wrote a letter to Mort Cooper, a voice therapist in the US about my possible condition. With his humming technique, I was able to stall proper diagnosis for some time. I was in denial, but finally gave in to Botox in November 2001. I have to say, there is nothing good about having this disability, even though good has come out of having it. Learning to deal with the humiliation of how people treat you. Some simply do not have the patients to wait for your words to come out. I have to constantly repeat myself and explain to people why I am not in the mood for a chat. Those that know me as being very outgoing find it hard to accept my request for quietness. “Elly, what’s up?” “You’re not yourself.” NOW THE GOOD PARTS Since having SD I have made many new friends, learnt to feel comfortable travelling alone, become fiercely independent and have a better understanding of others. These are the rewards that have helped my personal growth immensely. I am now 54 years old. Since that special day in April 1999 I have witnessed the birth of five grandchildren from two beautiful daughters and my fashion career has re-blossomed. The highlight for the last 3 years has been working for Alex Perry, one of Australia’s top fashion designers. My incredible overseas journeys have continued .Reaching the summit of Kilimanjaro was the most physical .Europe with my friend Rosie was the most relaxing trip. Dancing Salsa in the streets of Cuba had to be the most fun!! Becoming the first white “Luo tribe” family member in the remote village of Karangu Lake Victoria Kenya, would be emotionally, the most rewarding time of all. To help and spend time with such beautiful people is a privilege. They are in my heart forever! Today, I wait quietly to see which way the wind blows. I am truly blessed. back to top Norton S. Beckerman After 8 years of speaking in a high pitched strangled voice with excessive blinking and hand tremors, I was diagnosed by 3 different doctors as having Spasmodic Dysphonia (SD). They each told me that it was incurable, but manageable with B-toxin injections. I took a regime of B-toxin injections for 4 years. There was a period of time after each injection when I could only speak in a whisper. This typically lasted 2-3 weeks, but after taking a B-toxin injection and not being able to speak above a whisper for 5 weeks I decided that it was time to learn more about my brain, and what was causing my “nervous disorder”. My timing was perfect. A tremendous amount of brain research had been funded throughout the 90’s, and a large number of studies were coming to fruition. The corroborating information that these studies revealed about the human brain was astonishing. Fascinated, and still looking for something that would lead me to an explanation of my SD, I just kept digging. Ultimately, I concluded that, although my SD may have been classified as a nervous disorder, it was actually a “Learned Speech Dysfunction”. I had unknowingly taught myself to speak in a high pitched strangled voice. It was my voice, I reasoned, that produced my excessive blinking and hand tremors. With the support of my neurologist and a speech therapist I terminated my injections, and started a program to teach myself how to speak all over again. I did, however, continue my research. I found myself devoting most of my time to researching and learning about the brain, and how it is affected by what we do or, as it turns out, by what we don’t do. Today, 3 years later, I speak in a deep rich voice, my abnormal blinking is gone, my hand tremors are almost gone, and I’ve regained my self-confidence. SD turned my life upside down for about 13 years, but as it turns out the time invested was well spent. It was as a result of my SD that I began learning about the brain as we know it today. It was SD that opened a fascinating world to me. It was SD that put me on a path of social contribution that has energized me in a way that I have never known before. Memory loss, loss of other cognitive functions and ultimately dementia seem to be a primary concern of people over 50. They’re scared because they accept memory loss and dementia as a normal result of aging, and they don‘t know how to prevent it. As it turns out, people do not have to remain hostage to the fear of losing their memory, losing cognitive function or being afflicted with dementia, regardless of age. In fact, they can improve their memory and cognitive function, again regardless of age. It is important that we, as a culture, understand that as we age we have much more control over our memory and other cognitive functions than we previously thought. People need to know what is necessary to maintain, and even grow, a healthy brain, regardless of age. SD led me to my research, and my research has led me here. I couldn’t be any more of a believer than an ordained minister, and like an ordained minister, I want everyone else to understand and believe. My efforts began by developing and teaching a mental exercise course under the auspices of Sr. Programs at the Arlington County, VA community centers. I continued by talking to my classes and making presentations about brain health. Arlington County started a Brain-Health committee under the auspices of Sr. Programs with the objective of education and support. Now, Arlington County actively embraces and supports brain health as a critical element in the quality of life of their citizens. Being part of this experience has been like opening a door to a very dark closet packed with people that want to come out. I know that I’m not the only person trying to get this message across, but I feel that I am a significant part of the movement, and it was SD that led me here. back to top Iris Bland I am 66 years old and live in the UK. My story began (I forget exactly) but about 5 years ago. I had a bad cold over Christmas and having just recovered caught another cold and lost my voice. It came back croaky and never recovered. I was scared to go to the doctor for about a year as I thought I may have throat cancer and did not want to know!. Eventually I plucked up the courage to go and had antibiotics for a week which did nothing. My GP then referred me to a consultant who prescribed antacids as he thought acid was burning my vocal chords. A friend said to me “you need not go as I know what he will say, he will say I cannot understand a word you are saying, come back when you can talk properly”!! We all laughed at that. After 9 months on these antacids with no improvement he looked into my throat and said the vocal chords needed draining. I had this operation a few weeks later full of hope. However, it made no difference to my voice. I then had speech therapy for several months with a wonderful speech therapist who did everything she could to help me but to no avail. Eventually I was diagnosed with ADSD and offered Botox injections. After the first injection I had a very quiet, husky voice for about 4 weeks and then my voice returned. I was over the moon. Everyone loved my sexy, husky voice and we had fun talking. I have just had my 8th injection which did not work so I am off back for some more in a few weeks. I know the muscles are very tiny and sometimes they miss the spot but I have a wonderful surgeon who is as disappointed as I am when it does not work. He wants it to work as much as I do. Having said all this I must say that SD is only a very small part of my life. I work in a Primary school in the offices and have never been off work with my voice problem. I explained to all my friends and colleagues what the problem was and handed out the 3 fold leaflets I ordered from the NSDA and once everyone understood what was wrong they were all very supportive. I answer the telephone, talk to the children and these days no-one ever mentions my voice even when it gets bad before an injection. It is no big deal to me. It certainly has not changed my life. I lost my parents a few years ago, my mother with Alzheimers and my father with chronic asthma. Having looked after them both and seen how they suffered I will feel very fortunate if SD is the only thing I have to cope with myself. I have a great family who have helped me through all this and my son emigrated to Oregon in 2005 before SD was diagnosed and I was croaking very badly. My husband and myself went to his wedding the same year and I said to him “after we have gone home everyone will be saying “don’t the women in England talk funny” After my first Botox I telephoned my son and he said how great to hear you nagging at me again!! I think there are lots of people with very serious illnesses and disabilities who would be glad to have just SD. I am the same person I have always been – I just sound different. My life is good, I have a wonderful family, wonderful friends and as long as I can say “I love you” to them the SD will just have to get on with it. I will pay attention to it every few months when I need another injection. Other than that I will ignore it and enjoy the good life I am fortunate to have. back to top Joan Bonfanti Shannon OK, I’ll admit there were moments when I considered socking people who painted a rosy picture about the whole SD thing. But, although I occasionally have a relapse, somewhere along the way I’ve changed. I sometimes think back to the time before my official diagnosis and realize how far I have come on this road. I have so much sympathy for the person I was then, and for everyone out there feeling that way at this very moment that sometimes I wish I could reach back in time to my younger self, and reach out to others who are wearing her shoes now, and comfort them. This is what I would say to them: My life is good. I am not defined by my SD, and there are many things that I have received because of it. Work: will not be an easy road for you, but you will be proud of what you accomplish, even if others are not fully aware of how hard your struggle is. When I found myself in a “challenging” situation, about to present to a group or having to think on my feet by having another vocabulary word at hand in case the first one didn’t want to come out, or just at the end of a long word-filled day, I conjured up Ginger – Rogers, that is. You know, the woman who did everything Fred did but backwards and in heels - because that’s how I felt a lot of the time. I worked hard to do the best job I could, and I believe because of that, I was promoted twice after acquiring SD, becoming the first female executive in my company. Good work is rewarded, and you have a lot to offer. Employers are thrilled to find people who are thoughtful, dependable, thorough, creative, problem solvers, confident, and able to connect with others in a variety of ways. These qualities trump SD in their minds almost every time. If not, you would probably not want to work for them anyway. Treatments: there is hope at the end of all that testing, all the run-arounds and second and third opinions, and the experiments with alternative medicine, acupuncture and stress reduction – for me it was Botox. I fought it for so long, and was so afraid to try it, that I could have wept after my first shot several years ago when I realized how ridiculously easy it was. It is not a perfect solution – my voice is never perfect, even with Botox, but it takes away a lot of the struggle to communicate. It has made me more humble and empathetic. I listen more than I used to. It is gift to be a good observer. I’ve learned to find humor in the world. I don’t sound great over the phone. I sometimes choke on my words when talking to people face to face. I cannot hide this condition, so I just plug away and get on with life. And the world has not ended. The people who loved me before still love me. Most everyone else understands and if they don’t, I can educate some of them and ignore some others. When I meet people who have disabilities, or who look or act differently, I relate to them and have found that my world has opened up. It grounds me and puts things in proper perspective. So many people in this world struggle far more with other situations than I do with SD. I’m more flexible. I’ve learned how life throws surprises at you that you adapt to. Of all the things I could imagine might happen to me, this was not one of them. But it was just one of many things that as that old true cliché says made me stronger. This included much larger things like helplessly watching people close to me die. And just as SD played a role in making me stronger and helping me move ahead, it’s also helped me to follow my heart in getting me back into art, my original passion, after 20 years in business. I think I am a better artist now because of it. This is what I learned that I want you to know: Life is short but it’s wonderful. SD adds another dimension to who you are. It teaches you things you would never have learned without it. Don’t let it limit you in any way. I’m proud of you. Step out into the world. Go. back to top John Brenner It will be nine years next month that those both dreaded and welcomed words, "you have Spasmodic Dysphonia" were heard. Dreaded because I thought that I would lose the ability to support my family, help raise my kids, and lose my life as I knew it. Welcomed because I had gone several months seeing doctor after doctor with no one really knowing what was causing my voice to fail me. Was it psychological or really some physical condition that I had? Was I going to die? What a relief to know that I had a real medical condition and while there was no cure there were some options for treatment. And oh yeah, it was not going to kill me! After getting some great treatment from Doctors (Zietel and Franco) and Voice Specialists at MGH and Mass Eye & Ear, I soon knew my fate. Cried a little, asked why me, and then decided that I wasn't going to feel sorry for myself. Life is too short and focusing too much time on something that I could not change was just wasting time. I searched the internet to learn all that I could about the disease. Utilized the NSDA website to learn from the “experts,” those that had already been dealing with this horrible condition. Quickly learned some of the 'tricks" of how to best use the phone, what things to avoid, and how to deal with the never ending question "what is wrong with your voice"? I still hold the record for the most "colds" in one year at my company! This horrible condition has impacted my life for the better in several ways. First, I have become a great listener. It is amazing how many people (without SD) love to hear themselves talk (I was guilty of this before SD). Often just took a second or two for a breathe and started yapping. Didn't care what others might have been saying as long as I got more words in. Now I need to be more selective when I talk and how much I say at one time. My SD has been on the more milder side so I can usually say things in shorter bursts and sound fairly "normal". This has created some great new friendships for me as people open up to me more as they know I will listen to them. It also helped me to believe it or not become a much better interviewee. Instead of blabbing on during interviews, I now ask great questions and work in points that I heard the interviewer raise during our talk. I am more direct and concise with my answers, which employers seem to welcome. My writing has also greatly improved (I guess this contest will be the judge of that!). I use email at work a lot more these days, but have also written letters to the editor that have been published. I really enjoy writing and have found this newly developed skill has opened doors for me in the workplace and also helped to build some new friendships. Maybe some day I will take up writing for a living, but for now just happy to have developed this great skill. Lastly, I use humor where ever I can. I find it takes the focus off of my voice and puts people at ease. I often say now that I have some of the best looking vocal cords from my Botox shots (wrinkle free anyway!). Laughter helps to drown out some of the unpleasant sound to my voice which helps me to forget at times that I have this condition. I am a survivor. I have kept employed in my Finance & Accounting field for most of the past nine years and have made more real friends who value my friendship regardless of how I sound. One of my close work friends has lost the hearing in one of her ears. We have some interesting discussions when it gets a little noisy and I can't be heard, not that she could probably hear me anyway! I am also the proud parent of two teenagers. My son is getting ready to find the college of his dreams. Both of them have turned out great. They escaped (at least from me, sorry dear!) a yelling parent. We were able to build a close relationship as they know that I usually can't yell at them. I can listen to their problems and offer them some advice without usually prejudging them. SD is not something that I would ever choose to have nor would I wish it on anyone, but it is not the end of the world. I will never be the life of the party (never really was before SD) and often have to repeat myself in crowded places which can be frustrating. However, with a little planning and understanding family and friends and oh yeah those Botox shots, it is something you can overcome. back to top Marj Brown My SD (adductor, abductor, tremor, and spastic palette) presented itself after my husband, two children, and myself moved 600 miles to a new community. That was in 1977 and I was not diagnosed with SD until 1986. My life was turned upside down. For 8 long years I floundered, looking for a diagnosis and, hopefully, a treatment for this unusual condition that had me. I frantically went to a variety of medical doctors, multiple speech therapists, and other non-conventional treatments. Nothing changed. Working as a secretary/receptionist seemed out of the question, but I was not willing to let this dysfunctional voice get me down. I entered college hoping that there would be a breakthrough regarding my puzzling condition. I would never have gone back to college if it weren’t for SD. Through a counselor at college I was diagnosed with SD. “I had SD, but it did not have me.” With SD I earned at degree in Liberal Arts at the age of 46. With SD I finished my graduate units and became a certificated teacher for the state of CA. With SD I was hired as an elementary school teacher out of a pool of over 200 applicants. With SD I had a successful teaching career for 19 years. With SD I was named “teacher of the month” and recognized in our local newspaper in 1999. With SD I was named “educator of the year” in 2007 out of 400 other excellent teachers in our school district. With SD I successfully raised two wonderful children. With SD I have been married for 43 years. (Kudos to my husband.) I have also been lucky enough to participate in two different research studies at NIH. I have flown across the US to participate in the genetic study there. During one of the visits, I stopped in Michigan and picked up my 97 year old Mother along with my sister and we all flew to Bethesda, MD. We all participated in the genetic study with Dr. Ludlow. (By the way, my sister and Mother were diagnosed as having a mild case of SD.) The second study that I participated in ( along with 19 other SD participants) was with Dr. Simonyan. A detailed MRI was taken of my brain and according to the current issue of OUR VOICE they found unusual deposits of minerals in the brains of those with SD. I chose to participate in these research studies even though I was working full-time and had to travel from one coast to the other because I want to do anything I can so that some day soon there will be a better understanding and possibly a cure for this debilitating disorder. What lessons have I learned from having SD? It taught me acceptance because I had to come to a point that I had to accept the fact that my “normal” voice was gone. I had to work with what was dealt to me. It made me more accepting of people who are “different.” People who deal with a disability have more compassion than others. It taught me to be brave because I was embarrassed by my “weak, shaky, very unusual voice.” I had to face people who could not understand me. That takes courage. It took courage to continue with my conversation when their faces were full of sympathy and confusion. They weren’t listening to what I was saying, but thinking, “What is wrong with this lady? Is she going to faint?” In fact, I now step forward and introduce myself to others and tell them about my disorder. Otherwise people are reluctant to come over and talk to me. It taught me defiance and determination. In order to survive and have a quality life, I had to resist the easy way to deal with this disorder and that was to retreat and not go out into public and not interact with others. I chose to be determined. Determined to beat this condition and come out on top. I was not going to be a victim. It taught me to be flexible and patient. I could not do some things we take for granted, like talking on the phone, like going through a drive-through. I had to be flexible when in a hurry I had stop the car, get out, go in and give my order in person. I can not be understood to this day in the drive-through. I can not just pick up the phone impulsively, but I have to write out what I want to say and then when my husband has time, he makes the phone call. As an educator, I could not take the “teacher’s edition” and just teach from it. I had to be flexible and develop lessons that would spotlight visual and tactile modalities and not auditory. It taught me to be thankful. Thankful that I had SD so that I could be an example to my students, to my children, grandchildren, and others. They could see first-hand that we all can have problems, but problems need to be used “as a guidepost, not as a hitching post.” It taught me the virtue of openness. This was one of the most difficult for me. I had to be willing to be open to friends and literal strangers. When the lady at the DMV gives me a recipe for a gargle because she thinks I have laryngitis, sometimes I would just say, “thank you.” And sometimes I would openly educate literal strangers about this personal disability that has me struggling to communicate. It taught me to be tough. As a child I was quiet and passive. This disorder taught me to be tough. I felt that the choice was to be tough and land on my feet or sit in the closet and suck my thumb. This disorder can suck your confident from you. I had to be tough. back to top O. G. Bruce Fall is a beautiful time of year in the Midwest. The green foliage of summer has turned to brilliant shades of red, orange and rust. Asters, and chrysanthemums are in full bloom and the air has an exhilarating crispness. It is also a time to experience colds and hoarseness. At first, I was slightly hoarse every week for a few hours at a time. This was because of the weather change and the fact that I was over-using my voice. As the weeks stretched into months, it became apparent that , this condition might be something else. As time went on, it became very difficult to communicate. I felt a blockade had built up in my throat and in order to get the words out I had to push each sound over this barrier. My granddaughters were young and loved to hear a story. As delighted as I was to read, it seemed every story had names such as Ariel , Alladin, Eric and such. (Vowel sounds had become impossible.) I found that I was turning to my painting rather than play bridge, shop or carry on a conversation with friends. The telephone became next to impossible to use. Several times when I had some speaking to do and did not feel I could do it, I found that I had such an adrenalin rush that the words flowed out. It was time to find help. I had developed another focal dystonia(benign essential blepharospasm) over five years earlier. Never did I dream that I dream that I might also have Spasmodic Dysphonia. Since I was active with the BEB support system, I had met several doctors around the country, who were treating Spasmodic Dysphonia and they gave me counsel. My problem has become very manageable with treatment. I do receive Botox injections. My doctor works very closely with me, to avoid a long period of “Minnie Mouse voice” shortly after the injections and, also, get my injections soon after I feel my voice is struggling. The National Spasmodic Dysphonia Association is close to us a our telephone or computer. A website is available, including a chat-room. Find out if there is a Support Group in your area and attend the meetings, you’ll be glad you did. My family and friends have been so supportive because they understand the problem. I may never enjoy voice messaging or automatic customer service lines. My words may not come easy but, with the help I have, I’m grateful for each day. back to top Sarah Bruce I was sitting there next to Alex, reading the school newsletter out loud to her, and laughing with that belly laugh which aches. A word or two slipped by, as if the wind stole their sound and all I could feel was breathless. I was in year 11 at the time. Full of too much hope and pride, confident for feeling young and beautiful, confident for having beautiful alliances. It’s a messed up world and we all are damaged, but me? Not me. “I think I’m getting sick” I said, as I wiped the tears gently off my check from laughing. “Yeh, it sounds like it” She looked at me and smiled. My memories don’t drift or turn like the pages in a book. These ones zoom past like cars, and I grab a glimpse which leaves me feeling shaken. The colors and the noise and the gust of wind, it lifts my skirt and tangles my hair. I feel embarrassed, like a four year old, I feel defenseless. The zoom speeds up I’m standing in front of two classes and three teachers. I’m doing my English speech and every third word or so is slipping away. I sound nervous, beyond nervous. I sound horrible. The faces stare at me and the walls fall in. I push through and somehow make it through the 10 or so minutes. The confusion is beyond comprehension and I was shocked at everything. A week or so later I manage to get to the doctors. He diagnoses me for laryngitis and what people call instinct sits well in my chest. I knew he was wrong. Full stop. Have you ever feared answering the phone because you know that for some reason, you can’t seem to say the word “hello”? Ever stopped going to the movies or restaurants because the venue might be noisy and you can’t talk over the sound? Everyday was an absolute struggle for that first year. At that stage I couldn’t string two words together, literally. I somehow went through and managed to smile, but it festered inside me and I dreaded so much going to class incase a teacher asked me to read. I thought I was weak, I thought I was crazy. Not once did a tutor approach me. They watched me struggle and go from an inquisitive kid with too many questions to an inquisitive kid with none. They rolled their eyes when I said I couldn’t do it, like this great student was all of a sudden a hassle. My HSC year dragged me into an obsession with drawing lips. It’s all I drew, even for my major artwork. Mammoth drawings where these black lines fell out of them like alive hair, they dragged to the floor, sometimes with blood. I drifted into the background at lunch, dug my head in a book or a drawing and shoved the music into my ears. No one asked me if I was okay, they just kept on with their lives and it suited me at times. I never told a soul about the pain until I stood outside the doctor’s office three years later. Mum turned around and grabbed me, I couldn’t even stand. One day in summer, the letters “AB SD” were scrawled across a letter to my General Practitioner. I searched Google for something, anything, just a little bit of light to clear my mind. I remember crying when I heard the audio on the NSDA website. It’s a strange feeling finding comfort from a stranger’s voice, but he sounded like me and all I could do was feel relieved. It’s hard to explain I guess, just Imagine walking. Everyday it’s an automatic process. But with SD sufferers, every single step is hard. And with every step sprawls a million questions. Will it work? Will I fall? Will anyone see me? Will it hurt? And most importantly, why? My falls have left me with scars, reminders of this struggle. Every single step, of every single minute, of every single day. These days the words float out. Speech therapy worked beyond a miracle and the Botox injections, although frightening, gave me a certified strength. Yet above all treatment, being diagnosed was the cure. And the rest, you pick up I guess. Adapt and overcome right? If I could offer any advice, it’d be to the friends and family of those who might have SD. Please, do not let the symptoms rest in the back of your mind. Do not tip toe around it because you are afraid to hurt them. Feeling alone is one thing, but feeling ignored is another. Strength builds from fear and in the spur of any moment you can either flee or fight. I have learnt to be patient and to choose my words wisely. To finally listen to what others have to say, and I mean genuinely take time to pay attention. It’s a funny concept but you can hear a lot in silence, so I beg you to take advantage of this gift, practice your words and find your strength and weakness. Teach what you have learnt and learn from those who have experienced. You will grow, you will understand and you will one day find pride in your own abilities. It’s a cycle and we all have a story to share. This was simply mine. back to top Janet Buehner I read your invitation to ‘tell my story’ how Spasmodic Dysphonia has impacted my life for the better! They have to be kidding, I thought to myself! They have not been beside me in the store when the clerk asked for my address and I was so uptight over what kind of noise would come out of my mouth that I forgot it! The clerk turns around to her co-worker and says, “She forgo her address!” How easy to melt into tears. Impact for the better! I tossed “My Voice” publication aside. That’s not for me! Not long after I received an e-mail message saying the dead line had been extended. I began to search my memory thinking maybe I have had some positive associations with SD. I had been teaching school for about 15 years when I noticed in the teachers’ lounge I was having a bit of a problem getting words out. Prior to that I had been teaching adult Sabbath School class every week and I had developed a bad cold that seem to have affected my throat. I kept clearing my throat and apologizing for my voice not cooperating. That was the beginning of the SD onslaught! I made the usual ‘rounds’ to the voice specialists. One told me to pitch my voice lower… but she really did not know the cause. I was also sent to a doctor who specialized in allergies. He wanted to give me enough thyroid medicine to make my thyroid stop functioning…the guinea pig route. Hmmm, no thanks! You know what they say…if ain’t broke, don’t fix it! As time moved on my voice became less manageable. Lady in my church referred me to an Ear, Nose and Throat specialist in Cincinnati. I was hoping he would help me get an early retirement but when he listened to my voice he said it wasn’t bad at all. “Eventually,” he said, “you will lose your voice completely.” I didn’t want to hear that…I didn’t go back! Then I was referred to a speech therapist in Dayton. That is where I was diagnosed with SD. He told me that my voice should level off, which was far better than ‘you will lose your voice altogether!’ He worked with an ENT surgeon who gave me Botox injections until they were no longer effective. My voice has gotten progressively worse with a few good days interspersed here and there, for which I am grateful. Isn’t it too bad that we take this wonderful gift that God has given us as if it is ‘part of the package’ and we never, ever expect to lose it? The gratitude comes too late for those of us who now have a condition that leaves proper pronunciation of vowels and consonants impossible – even for teachers who used to teach phonics! A good sense of humor helps cope. I walked into the bank shortly after having a botox injection. One of the vice presidents, accompanied by a client, greeted me and my husband quickly said, “She is not allowed to talk, she just had a shot.” The client quickly asked, “Where do you get those shots? I want one for my wife!” Also, I’ve learned to listen! I listen to others when they talk and have found out you can learn a lot by just listening! I am part of a very verbally active Sabbath School class. With this ‘whispering disease’ it is difficult to make yourself be heard. I have resorted to raising my hand and in my loudest voice say, “Wait, it is my turn!” After the class one day, one man said to me, “Janet, you are like B.F. Hutton. When you talk people listen!” For those of you who don’t know, that was a TV commercial where in a multitude of voice, when B.F. Hutton talks….everything gets very still! That is exactly what happens! When I throw my little ‘my turn’ into the mix it gets very quiet and every eye is on me. It almost makes me forget what I wanted to say! Despite the strained voice I am still me. My personality is still the same, my thoughts, my hopes and my ambitions are the same. And I still do have a voice. It may be different than the voice I started out with, but it is still there. I am determined to let my voice be heard, one way or another. back to top Jerry Carter I don't think anyone who has made it to age 60 doesn't look into the mirror every now and again and say to themselves "can that be me"? What happened to my hair and to the young man that used to live so boldly in that mirror? Living with SD can at times evoke the same reaction from those of us who have this disorder when we hear a voice message that we have left. We hear our words from our minds the way everyone else sounds and you hear the words that come out with confusion and at times shock. I have had some problems with my voice for the past 30 years. As a sales representative, I have to use my voice in my trade; and, as with so many things in life, my voice problems have gotten worst as I have gotten older. I wouldn't go into all the treatments, tests, injections, that I have gone through trying to find a cure. I have been told by several doctors and speech centers I have Adductor SD but Botox injections and speech therapy doesn't work for me. I know the theme of this story is to be on how my voice disorder has impacted my life for the better. I guess I could start by saying I have had a great opportunity to meet a lot of nice doctors and speech pathologists; and, I have done my part to support the health industry in the Southeast. Last week I did something that I used to do all the time and that was to use the microphone and talk to about 100 people about the company I represent. I just started off by telling them quickly about my voice disorder and I joked that losing the hair was more traumatic that losing the voice. It was a very nice presentation and I felt great about it. Actually I have always been a good speaker but just have a bad voice. I tell most people when I first meet them quickly about my disorder and joke that it is not contagious (my voice now sounds like I have a bad cold all the time as my body is using my fault folds when I speak). Having this disorder makes me appreciate all of the gifts that God has given me in my life including my wife, my family, my dog, my career and even my strange voice. You know, when I call one of my accounts that I haven't spoken to in years I NEVER have to tell them who is calling. They never forget this voice. When I talk to my clients like last week, I can hear the room get more silent as they are listening to hear what I am saying more closely. As long as I don't let this disorder bother me then others will get my message. This disorder also makes me be more focused on what I really need to say and clients appreciate that more than most sales people understand. I am very proud to say that when the founder of the company that I represent retired earlier this year he told me that I was the best sales representative his company has had in the 27 years they have been in business. Compared to what so many others have to deal with in their disorders and sicknesses, I feel my voice disorder is not that bad and I guess this is the voice God wanted me to have. However, I'm still a little ticked off about the hair deal. back to top Bessie Cherry How Spasmodic Dysphonia Has Impacted My Life For The Better My career in television broadcasting began in 1996 at age 18. With “a typical broadcaster’s personality,” which was the exact quote my boss used to describe my natural communications inclination, I had literally “talked” my way through the doors of the local cable-com station while I was still in high school. After a few months of selling commercial “ad-spots” and also appearing in them, my boss gave me my first shot on-air. My assignment, incredibly, was to cover President Bill Clinton’s campaign tour for re-election! Stationed in the press box with the major networks, I chatted with those I considered “famous” broadcasters—ones I watched nightly on the 10 p.m. news! My heart pounded as I introduced myself for the first time as a local anchorwoman! Broadcasting from the press stands in downtown, “small town”, Tennessee, I realized I wanted to be a journalist forever! I still accredit that day as the most exciting day of my life! After graduating high school, I enrolled in a communications program at an accredited university nearby. I continued working for the station part-time, hosting a Sunday show. When I began losing my voice to abductor spasmodic dysphonia in 2000, it seemed to be the most traumatic loss that I could’ve ever suffered at that particular time in my life. Adjusting to this rare life change, I felt like I’d lost it all. I lost both my broadcasting and academic careers. Even worse, I lost hope. I cried to God many nights, asking, “Why did I have to lose my voice?” Little did I know that what seemed to be my most crippling limitation would in time condition me to be a more effective humanitarian communicator, place me in an alternate sequence of my beloved field and open doors of opportunity beyond my wildest dreams! Communicating by telephone was impossible; I was forced to conduct my business by either email or letter. Writing became my most effective form of communication. It became my voice. Soon, I realized that writing must be in God’s great plan for my life. In 2004, I went back to college and began writing for the campus newspaper. I loved it! Seeing my name in print made me just as proud as being asked for my autograph during my days on-air. Just before graduating in 2006 with a degree in news editorial/print communications, my internship leader asked what was wrong with my voice. I told her, “I have a voice disorder but it’s much better these days.” She said, “You know, there’s a famous writer who also lost her voice for many years before regaining it; her name is Maya Angelou.” Eager to learn more about her, I immediately looked up her biography online. No words could ever describe how I felt when I scrolled down the page to find that Maya Angelou and I share the same birthday: April 4! At that moment, it felt like God was winking at me, ultimately reinforcing my life purpose and answering every “why” I had ever whispered concerning my voice loss. Gigantic plans for my writing career were surely to come! (I’ve often been quoted saying, “Broadcasting was my first love. Writing is my true love!”) Recently, I learned that some of the most effective communicators in the world battle SD—namely, Diane Rehm, a famous radio broadcaster in Washington; Robert Kennedy, Jr., a prominent environmental lawyer in New York; Martha Grimes, an award-winning European mystery novelist; Scott Adams, creator of the Dilbert cartoon series; and last but most certainly not least, Darryl McDaniels, most widely famed “DMC” since the twenty year reign of the legendary rap group Run-DMC. Partly because of the undeniable, unspoken brotherhood that exists among those who battle SD, I landed what many would consider an “interview of a lifetime” with Darryl McDaniels. He granted ME a national, initial exclusive interview concerning his latest quest to clean up rap music for our youth. I wrote and published the exclusive and DMC appeared on the cover of the first issue of my newspaper, released in August 2008. I’m now in the process of “pushing” the article to every communications medium throughout all 50 states. You never could’ve told me when I first developed SD that one day it would be the very reason that I’d write for celebrities, nor could you have told me that I would be as honored as I am today to share in this battle with some of the most effective humanitarian communicators in the world! back to top Nancy Cook I got Spasmodic Dysphonia in the year 2000, but I never went to the doctor until 2003 when it was diagnosed. I didn't pay much attention to what was happening until people started asking me what was wrong with my voice. I just told them I had laryngitis and/or allergies. Work became increasingly difficult, as I am a high school counselor and had to speak a lot to parent groups. Talking on the phone was particularly difficult (thank God for email). The first lesson I learned was self-acceptance and honesty. I finally told the school administrators I couldn't talk to large groups anymore. They didn't get it, but heard my strangled voice, so they let me be, though they weren't too happy. In addition, since I didn't feel I had a voice at school anyway, in terms of influencing the administration about anything, I quit trying to change what I couldn't change. I eventually accepted the fact that they didn't want to hear what I had to say, so it was a useless battle. So, the second lesson I learned was "to choose my battles wisely, choosing struggles that bring about personal change, rather than overly idealistic efforts that lay beyond the scope of 'my' influence." (Body and Soul magazine, October 2008). SD has also made me feel a solidarity with people in the world who feel they have no voice. The third lesson I learned was to listen. When I was a kid in school, I always got in trouble for talking. Even today, one of my friends tells me I talk to much! What SD has taught me is to talk less, and listen more, that listening is one of the greatest gifts a person can give. I have been pushed into listening more because talking is such a strain. I've learned to listen to my body, to my spirit and to others more intently. Moreover, I've learned you can listen but not really hear. As a counselor, I thought I was a good listener, but when I could still talk, many times I was listening without really hearing. I've learned a lot from SD, and I'm content. I began Acupoint Nutritional Testing this year, and have learned I have a cold virus in my vocal cords. I am also going to a chiropractor. My voice is still strangled often, but I am feeling totally healthy and energetic. Self-acceptance, honesty, wisdom, compassion, understanding and empathy, these are the gifts I have received from SD. Of course, it would be nice to have my voice back, but it is not that important to me now. back to top Nancy C. Davis I was diagnosed with Spasmodic Dysphonia in 1995 when I was fifty-seven years old. After my diagnosis I thought whoopee, I can get my voice fixed now, however that would not be the case. Neither Botox injections nor speech therapy helped my Spasmodic Dysphonia. Two more tries with two different ENT’s had the same results. My family physician told me – as nicely as possible- I just had to accept my diagnosis and learn to cope with it. One day our grandson, who was born after my diagnosis of Spasmodic Dysphonia, asked me why I was going to the doctor, I told him to see if I could get my voice fixed. He looked at me and said, “but grandma, I like the way you talk.” This turned out to be a precious moment for me. When I was first diagnosed I thought about what I wanted to say before using my voice. I’ve learned when I don’t think about speaking, my vocal cords don’t tighten up and I have a voice. The first time I tried to order fast food through the drive through, I was speechless. I couldn’t get my voice started – I opened my mouth and tried to talk but not a sound came out, my voice froze up. My vocal cords had clamped together and left me speechless. I’ve learned not to focus on speaking, not to think about what I want to say before speaking and just say it. Now I can order and very rarely have to repeat my order. Talking to an automated system on the telephone has been difficult to accomplish. Now I’m able to go off in a room alone so I can speak louder where my voice is understood. When talking to a person on the telephone I inform them of my voice disorder and if they need me to repeat anything to please ask me. Everyone is so kind, which puts me at ease and makes it easier for me to speak. When I meet people – who don’t know of my Spasmodic Dysphonia – I’m now able to tell them of my voice disorder before conversing, making it easier to speak. Before I became bold, I avoided conversations. Since my diagnosis of Spasmodic Dysphonia my husband has developed a hearing problem and now wears hearing aids. My Spasmodic Dysphonia was very trying for both of us. I’ve found if I speak in a lower voice, speak slowly and distinctly he can understand me, plus it’s easier to get my voice out. After having Spasmodic Dysphonia, there were two things that surprised me. The first was when I talk in a high voice – (like when I baby talk to my grandbabies or pets), the words flow without any effort at all. If I could train myself to speak in the high tones I wouldn’t have the strain on my vocal cords but would sound like Karen on Will and Grace. At times when I’m trying to get my message out, I can do so by changing my voice to the higher tone. The second thing I found is that I can yell and the words are loud and clear, other times I can speak in a loud whisper and be understood. When I received the e-mail to write my story about how Spasmodic Dysphonia has impacted my life for the better, I thought – you have to be kidding. How can a voice disorder do that? Remembering the ways I’ve handled my voice disorder helped me realize how Spasmodic Dysphonia has made me a stronger person who can cope with whatever is given to me, and has indeed impacted my life for the better. Before having Spasmodic Dysphonia, I took having a voice for granted. Now, I don’t and I’m thankful for whatever voice I my have by using my coping skills. I hope the things I’ve learned and shared will help others with Spasmodic Dysphonia. Knowing Spasmodic Dysphonia is an incurable neurological disorder, sometime I wonder what causes the disorder. I can only pray that in the near future there will be an answer to my question and a cure or treatment will be found for all who have Spasmodic Dysphonia – so that once again their God given voice may return for them to speak as easily as breathing.back to top Susan “Teri” Davis Twelve years have passed since I developed SD. It was at a time when it was unknown to the older ENT's and doctors. I was in my fifties. I had just lost my father and trying to help my mother adjust in a state far from mine. I worried a lot and came home with stress. My voice started to wavier and I told myself it will go away. After six months my husband said go to a doctor. I decided to go to an ENT. He gave me the throat scan with a tube down my esophagus and other tests. His report said there was no problem, so why not try speech therapy. After six months of voice correction I told myself this is of no help. I secluded myself in self pity. Several months later my face became numb and my hearing was starting to diminish. I went to an ENT surgeon, specialist. He was a young oriental doctor who had a new practice. He examined me for an Acoustic Neuroma. I asked if it was related to my voice. He said no, but may I give you a voice test. He tested me and said you have Spasmodic Dysphonia. At last a answer to what it was. After surgery for the tumor I lost my hearing in my left ear and I heard my voice in a different way. I sounded terrible. I started searching on the internet under voice disorders and found SD information from several hospitals and a local one near me that had another young doctor who was an ENT with knowledge of SD. I went to speak with him and he informed me of so much and specialized in SD. I started the Botox injections with him for several years. He had formed a support group at his hospital, please come. I attended. I was surprise at the number of SD people there were. The ages were from 30-70. The stories were unbelievable. After several years I feel secure with my problem and adjusted. I have stopped the Botox and learned to speak slower and tell people I have a voice problem before we talk at length. On a recent cruise a young woman I spoke with at dinner said my voice sounded like hers. I told her my story and related her to the SD website. Thank you for making this known to the doctors and public. Your newsletter is informative. The new ENTs seem to know more than the older generation. I think it is due to your exposure. I am in my upper 60's and go out in public with no self consciousness now. Please keep up your wonderful work. back to top Janice Dedrich My story begins when I was 19-years-old, which was 35 years ago. I began to notice something was wrong with me when others started bringing it to my attention with comments like, "why do you talk that way", "are you crying", or "what is your problem". Gradually, not a day went by that I did not hear this. I started to notice more the difficulty I was having with speaking. I also noticed that drinking alcohol helped me speak better, but the next day my spasms worsened. I could have very easily evolved into an alcoholic because of this condition. I didn't want to talk, because I felt I sounded like a freak, and I slowly withdrew more into myself. My self esteem was at an all time low. At 21 years of age, I went to the Mayo Clinic where they took all kinds of tests and concluded that I needed a psychiatrist. I agreed and I was placed on a lot of medication. I tried the medications for awhile, but I knew in my heart that this 'thing' in me was real and not psychological. I could not control it and it was not just something that I had imagined. I became angry and started telling people that I had cancer, in order to stop their comments. At 22 yrs. old I started college, but soon dropped out due to a virus. The virus temporarily took the sight of one eye. Leaving college behind I fulfilled my childhood dream of becoming a hairstylist. I found that to be extremely difficult. Talking with my clients and trying to sell them on products with this awful tremulous voice. While I was trying to figure out my career path I trained in Shotokan Karate, which gave me a great sense of freedom to express myself without words. Karate helped me to dispel my anger and frustrations, which were about my self and my voice. I trained hard, competed in tournaments, and I achieved my first degree black belt. This gave me a sense of belonging in that I could be good at something despite of my voice. Consequently, it boosted my self esteem BIG TIME. As the years went by I became bored with hairdressing and stumbled upon the profession of Occupational Therapy. I hesitated at first, fearful of all those speeches I would have to give to get my degree. Deep within I brought up the tenacious side of me and enrolled in the program. At 34 years old iI was diagnosed with spastic dysphonia and I also graduated with an A.S. degree. A weekend program opened up where I could get my B.A. as an Licensed Occupational Therapist. I enrolled while working as an assistant. These programs opened my eyes to people with various disabilities and diseases. Taught me how to treat them and give them a sense of hope and dignity to return them to an increased level of independence. I felt that having spastic dysphonia gave me an edge at the saying, "I know how you feel." As a result, others would tend to open up more to me allowing them to feel more connected to me, there therapist. I learned to have more patience and compassion and to know there is always someone out there with something worse than having spastic dysphonia. I started getting Botox injections from an ENT here in Tucson when I was about 41 years old, but was discouraged as he did not work with me on the dosages, and I would loose my voice for a whole month. This was more frustrating than the actual spastic dysphonia so I discontinued this. Eight years later I met another ENT who had worked with me on my dosage of botox. He also will numb the area prior to the injection per my insistance, and now does this for all of his patients. Because of my own experience and my training, I have been able to recommend others afflicted by a dystonia to see a neurologist and have educated them on the effects botox. After they receive the injections, I may see them and work with them so they can function better in their activities of daily living. I have met others with spastic dysphonia who have been frustrated with trying to find out what is wrong with them. I have been able to educate them as well and refer them to the correct specialist in the field. I now feel more in control of my self and my life, and I have become a much stronger and compassionate person, and I love the profession I am in. back to top Carol Doles My journey with SD has been an emotional roller coaster. At this point in my seven year ride, I can truly say that I am a better person for having the disorder, but I have not always felt that way. In the beginning, I was misdiagnosed for more than five years. During this time, I felt like my voice problems were caused by something that I was doing to myself. I felt helpless. I stopped interacting with anyone outside of my family and close circle of friends unless absolutely necessary. I developed a very real fear of interacting verbally. I stopped using the phone and enlisted my family to do as much of my talking as possible. Upon receiving my diagnosis, I was relieved to have an answer, but devastated to have this answer. Growing up, I wanted to teach and help others understand their intrinsic value. I began my pursuit for a degree right after high school, but took some time off to stay home with my children. After twenty years, I obtained my bachelor’s degree and began working in my dream job. I loved teaching and felt like I was making a difference in the world. As my voice worsened, and I received my diagnosis, I felt like it was the end of my world. My identity was totally intertwined with my voice. I didn’t know who I was without it. Over the next two years, I discovered a new me, one who still has value and can contribute. I have learned important lessons about priorities and have developed a heart for the hurting. Now, I make an effort to take the time to help those who are struggling. In my classroom, it may be that child from a broken home where the parents are so busy surviving that the child has been pushed aside. In the community, it is the older man who has developed a condition where he is hard to understand, but still has the desire to share in conversation. My journey with SD has included lots of tests and doctor visits and waiting for answers. I have discovered the importance of having someone care about your journey. I now reach out to others and let them know that I am remembering their pain and uncertainty, and am praying for them. I used to view trials and adversity negatively and totally missed the truth that they are opportunities for growth. Trials are opportunities for me to discover a new depth in my relationship with God and learn things about Him and myself that could be learned no other way. Trials are opportunities to strengthen and encourage others who are facing similar trials and need hope that they can still have an abundant and fulfilling life in the midst of the adversity. My trials have motivated me to search for knowledge and truth. I have discovered that although painful and difficult, circumstances don’t define my life or determine my emotions. It took me a long time to make these discoveries. I want to help others find joy much quicker and will begin leading a women’s study on dealing with life’s adversities in January. This past summer, something wonderful happened. I inquired about attending an SD support group. There were none in my area, but the NSDA asked if I would like to start one. I asked all of my family, co-workers, and friends at church to begin praying. I told them that I had a paralyzing fear and would not be able to lead a group, but that I really felt like I had to give it a try. One of the steps in the preparation was to find a place for our meetings. We had great difficulty securing a location, and I had to make phone call after phone call. Before this, I didn’t make phone calls – period. I actually enjoyed making the phone calls. I was able to tell so many people about SD. With each step of the process, the fear of speaking began to disappear. We just had our first support group meeting, and I loved interacting with the attendees. I was so energized and excited that I came home and made many more phone calls to tell everyone and anyone who would listen about the wonderful blessing of our group. I feel blessed to have SD. Without it, I would have missed so many wonderful experiences and meeting so many wonderful people. back to top Karein Druyon In 1984 I had to drop out of choir because I could no longer hit the notes I used to. I have a great ear for music and that was my first indication that my voice was changing. Little did I know that it was going to be a lifetime challenge. My voice disorder became distinctly noticeable, so much that my peers started teasing me. It sounded like a digital phone with a bad connection. You could only hear bits and pieces of what I was saying. After a few years of wrestling with my voice, I convinced my mother to take me to an EENT. To no avail, he indicated there was nothing physically wrong and advised my mom seek other help. My intuition told me that it was physical and I trusted that for years to come. Four years later—still no answers. Sometimes I thought I would sooner have had a diagnosis of throat cancer than to just not know. I often went home completely frustrated from social gatherings like dances, restaurants, concerts, etc. My voice lacked volume and clarity so conversation was difficult at best! It was in college that a friend one day handed me a quip from Ella Wheeler Wilcox, ”There’s no chance, no destiny, no fate, that can circumvent, hinder or control the firm resolve of a determined soul.” That saying gave me strength to be a contribution to other people’s lives, and not worry about what I lacked. I left school to serve my country by joining the ranks of the Army paratroopers and being the only female in my permanent duty station! Up to this point I always avoided jobs that required me to be on the phone. One of the hardest things for an SD patient, next to child birth, is talking on the phone! However, the position I landed during Desert Storm was a phone job-- calling companies to let them know how many soldiers they were receiving that week. My voice worsened with the stress of war, lack of sleep, and dealing with impatient, uncompassionate men on the other end of the phone. That was my breaking point. I emotionally struggled through each day only to find myself on my bed crying myself to sleep. I had to dig in again to see if I could find answers about my voice. The speech pathologist at the Army Womack Medical Center on Fort Bragg was my saving grace. She gave me more hope than I could have ever asked for, but in the same breath more discouragement. “You have a rare voice disorder, Karein. It is called abductor spasmodic dysphonia. There is no cure for it, and speech therapy won’t do a lot for you. They do have a new drug that they are trying on SD patients. Right now there is only one place in the United States administering it.” So, in 1991, I laced up my jump boots, tucked my hair back under my beret, and exited with a new found strength. In 1994 I moved to Arizona and found an EENT surgeon who was trained in administering Botox into the vocal chords. In 2007 I had a type 11 thyroplasty surgery with a hopeful 70% to 80% voice quality increase. To the dissatisfaction of my surgeon and my own painstaking disappointment my voice didn’t change much at all. Every three months I get an injection to try to keep my voice smooth. It is difficult enough trying to parent four children as well as teach children with Autism when you don’t have a nice loud “teacher’s voice”. I can’t teach the conventional way, so I have to modify instruction and group size. I teach small groups only or one-on-one. My students have learned to listen, and I have learned to communicate. My own children, on the other hand, have learned one thing for sure, and that is; you better come running when mom whistles! All four come running, even if only one is needed. I can get them home from down the street, have them find me in a store or locate them in a stadium full of people. I may not have a powerful voice, but I have power in my whistle. My voice has taught me to be resilient, laugh, adapt and overcome, and boldly take on any challenges. It has taught me compassion, patience, acceptance and love. Most importantly, it has taught me how to whistle! back to top Laura Felix When thinking about my life with Spasmodic Dysphonia (SD), a seashore comes to mind. Most specifically, there is a high tide today. I am standing there on the beach and letting my hurt, my pain and my feelings of inadequacy be washed away. Remaining in my life are the treasures that years with SD formulated and refined, including the knowledge that in my weakness, God is strong. The year was 1988 and a group of 6th graders, including myself, were assembled in the hallway of our elementary school practicing for a class play. My role was a rather important one, given to me by teachers who believed I possessed the capabilities to perform it. Life changed forever when during a practice my words would not come. The laughter rolled in sounding like the cacophony of a taped track from a sitcom, something that seemed funny but was not. The medical professionals began their assessments. “Idiopathic” became a word that as a 12 year old, I now understood yet did not wish to comprehend. It was most definitely psychogenic, thought the professionals. “Psychogenic” was another word I did not wish to comprehend. In my soul, my young girl’s soul, I knew for a fact that my SD, then nameless, was not related to any tragedy from my past. Meanwhile, my parents guided me with grace and encouraged me to persevere. Junior high and high school were years of voluntary exile. A gregarious person by nature, I retreated and only spoke in school when I was able to whisper, had my parents help me with telephone calls and would cry if anyone told me to “just relax and take a deep breath.” Relaxing did not rescue my speech from its prison walls. Still, a diagnosis eluded me, yet a caring counselor helped me cope with my emotions and I began seeking solace through my prayers. College brought forth my miracle. An angel lived down the hall in my dorm. She had SD too and had been diagnosed. “You have SD,” she stated with certainty. Still grasping for an understanding of this assertion, I found myself at the Purdue University speech clinic where this new friend made an appointment for me. With the help of Dr. Vicki Hammen and Barbara Solomon, the course of my life changed forever. Nights were now spent reading everything I could about this new diagnosis, studying the speech mechanism, writing letters and trying to integrate myself into this new pool of knowledge. Promptly, my college major was changed to speech language pathology and a vow was made to change others’ lives the way speech pathologists changed mine. It is a career I still embrace. Eventually one of my letters was published in the newsletter of the National Spasmodic Dysphonia Association. In that publication, my contact info was provided and two women with SD entered my life, both of them in West Lafayette, home of my university. We started a support group and Dr. Hammen became our advisor. We soon left the halls of Purdue and held meetings at one another’s homes as family. This family was also able to reach out to another woman with SD who shared her suicidal thoughts when she responded to my published letter. Her life too became full of promise and hope. In addition to meeting my inspirational support group family, true love found me in the form of an adoring and supportive husband. He participates in support group meetings and even educates his friends and colleagues about SD. We have two children and they too stand behind me as they know their mommy “just talks like that.” Our 5-year-old son says “God made my voice special” and he is correct in that assertion. Acquiring SD so young was a blessing in disguise because my life has been built around it. The choices I have made come directly from SD as it is at the center of my very being. Currently a contender for Mrs. Colorado, my aspiration is to make it to nationals as Mrs. America, taking my message across the country, teaching school children about tolerance of differences and raising awareness for SD and other communication disorders. The girl who could not perform in the school play is now center stage with renewed strength, purpose and determination. Thank you, SD, for making my life count in this world. It is indeed “the best of times,” as the great Charles Dickens penned. The “worst of times” is behind me. back to top Kathy Fletcher It all started back in 1987. After many months of doctor visits and being out of work, I was sent to Duke University in Durham, N.C. While there I saw a great doctor, Dr. Richard Kenan E.N.T. who has since passed away. I was so thankful to be finally diagnosed, but sad at the same time. I went from a very sociable/confident person to being very scared to be around people. We take our voice for granted until we don’t have one. It was so hard to have to think about what I was going to say, before I spoke. I went back to Duke for several months for speech therapy without success. I was getting very discouraged. After more speech therapy, the doctors discussed with me about having a left laryngeal nerve resection. My speech therapist didn’t feel very comfortable with the botox injections at that time. Also, insurance wasn’t covering the treatments as they are now. The day I went back to Duke to discuss the surgery, turned out to be the saddest day of my life. My twin sons left to go to the beach with some of their friends, to celebrate graduation. One of my boys got killed in a freak car accident on the way down. My speech therapist had to break the news to me in the office. I thought getting diagnosed with this disorder was bad, but it didn’t come close to what I was feeling that awful day. That was back in May 1991. By the grace of god and my will to keep trying, I went back to Duke that same year, and had the surgery. The surgery went well and I got to go back to work. I went back to school in 1995 to get my L.P.N. license, and have been working as a nurse up until now. I still have times when I am stressed or fatigued that the spasms want to return. And at times I still get very depressed knowing I am not the person I used to be. But I have a lot to be thankful for. I have learned in life to take what it brings me. I sit and listen to what God says, and try to put the rest behind me. Each morning I get up and ask Him to help me make it through the day, and each day he does. Sometimes life is not good, and He didn’t promise it always would be. For years I have been trying to hide from this disorder and I have really never talked about it much to other people. I think back to when I was first diagnosed. How wonderful it would have been back then to have a support group to encourage each other. I recently signed up to become a support leader in my area to try and help other people that are dealing with this disorder. I contacted the southeast coordinator for NSDA and he has been very helpful. It will bring me great joy to be able to help others dealing with this disorder and to give back what God has given me, the courage to go on. back to top Kim Fragetta I have a magic wand. I discovered this treasure at a souvenir shop while on vacation. It is blue and made of plastic. When I push the small heart shaped button, it lights up and plays music. My magic wand cannot cure spasmodic dysphonia, but on days when my voice is tired, breaking up, tremoring or more strangled than usual, it lets my students know that I need their attention. It is one of the tools I use to make the best of a challenging situation. (I also have a wooden train whistle to keep things interesting.) Other tools include: botulinum toxin injections, acupuncture, e-mail, assertiveness, humor and the love and support of family and friends. My students have taught me that communicating is more important than voice quality. They are very accepting and understanding which keeps me going. I don’t recall when I first noticed the changes that were taking place in my voice, but I do remember ignoring what I was hearing for a long time. My family and career kept me very busy so it was easy to put off seeing a doctor. As a teacher, I needed my voice and the thought of not being able to speak was frightening. I also feared that it was cancer, because cancer had taken my dad when he was only 45 years of age. Eventually, I could no longer ignore what was happening. I grew tired of being asked if I were ill. My mother did not recognize my voice when I left a message on her answering machine. But what prompted me to take action was when a student asked me why I always sounded as if I were about to cry when I talked. My first appointment was with my nurse practitioner. She gave me a thorough physical exam and when my blood work came back fine, she referred me to an ENT. The ENT scoped my throat and didn’t find anything, so I was referred to a neurologist. He mentioned the possibility of ALS, Parkinson’s disease or multiple sclerosis. After my MRI came back normal, I was sent to a speech therapist. She didn’t know what was going on with my voice and wanted me to return for therapy, but I did not. What to do? I learned that second and third opinions aren’t enough. I called a friend who lives in Florida and is a Speech Pathologist. We talked for a long time and she told me about a rare condition, Spasmodic Dysphonia, and recommended that I make an appointment at Syracuse University Hospital. That is where the mystery was solved and I was diagnosed with spasmodic dysphonia. It wasn’t a terminal illness! The only place that I truly love being the center of attention is in my classroom. I am a private person and I am not competitive, so the thought of sharing my story in a contest did not appeal to me.( Although initially, after receiving my diagnosis I was relieved and found myself sharing my journey with family, friends, colleagues and my church.) To “go public” on a larger scale, was not something I felt driven to do. But recently that has changed. Last spring a retired school administrator asked if I would be willing to talk with her friend who was experiencing some voice difficulties. The minute I heard the woman’s voice on the other end of the phone, I was quite certain that she had SD. I told her what I had gone through and as we ended our conversation, she told me that she was going to continue with the medication that her doctor wanted her to try first, and that she would let me know what happened. About two weeks ago she called to let me know that she eventually went to Syracuse and was diagnosed with SD. She is a lawyer and needs her voice for work, so we share many of the same challenges and frustrations. Knowing that by sharing my situation with others, I may have helped someone, has led me to “enter this contest”. So now it is time for “each one to teach one” through word of mouth or by pressing computer keys. After reading this, please pass it on so others become aware of SD. Suffering in silence is not the answer. My name is Kim Fragetta and I have spasmodic dysphonia, but spasmodic dysphonia does not have me. back to top Pam Gallagher I am a technical trainer with a global communications OEM and living in Northwest Indiana. My brother Kevin was diagnosed with adductor SD a few years earlier so I had some idea of the phonation variations associated with the disorder. I was in Mountain View, WY conducting a two day training course when I noticed my voice was being cut off especially when I was trying to produce vowel sounds. I didn’t think anything of it as it came on so subtly and was so gradual that I didn’t even consider that I might have SD. I didn’t sound quite like my brother as his phonation was very abrupt and obvious. I believe I had an upper respiratory infection as my sinuses were killing me and it was winter. I flew home and it was then after having this problem for a couple of weeks that I considered that I might have SD. I called Kevin and he didn’t think I had it, I believed I did at this point. I made an appointment wit Dr. Robert Bastian who as it turns out, is a leading expert in SD. I was on my way out of town and met with Dr. Bastian who scoped me and made the diagnosis of abductor SD. He explained the disorder and I was administered my first Botox injections, and noticed improvement with the next two days and was amazed. I speak for a living so it was essential to have a treatment plan, or I would have had to find a new occupation. I can really tell when I need my injections as I notice it harder to breathe and I get tired along with the signature vocal chord spasms. I know I am lucky as I have insurance and can get my Botox. My brother on the other hand had two surgeries performed by a Dr. at Mayo in Phoenix that to my estimation were total flops and wiped out my poor bothers life savings. Kevin incidentally, does not have insurance. I think it would be a tragedy to have this disorder and not be able to get treatment because the cost is astronomical for the un-insured. The NSDA should have a fund established to help those who cannot afford treatment to give their voices back. I count my self very fortunate. back to top Deborah Gelfand My name is Deborah Gelfand and I have spasmodic dysphonia/dystonia for the past 22 years of my life. I am 49-years-old. I was diagnosed by Dr. Mitchell Brin at Mount Sinai in early 1990s after a long battle with psychiatrics, neurologists and a number of other specialists that thought that it was all in my HEAD! I had an abusive childhood as well as an abusive marriage. I am the youngest of four sisters and no brothers. Both my parents had to work to provide shelter and food for us and my mother had to go back to work as soon as my sisters were old enough to babysit the younger ones such as myself. There was no words such as, “I love you” spoken in our home. I don’t know why til this day. I know for myself I never felt love throughout my childhood years and adult years. I remember at age 15, I was walking home from a friend’s house and noticed that my right leg was paining me so much that I was limping my way home. This was the onset of dystonia I was told by Dr. Mitchell Brin several years later. When I got married and had my second child – my voice started to malfunction. I was surprised because I wasn’t sick – just physically, mentally and emotionally abused by the man I married. Getting a divorce was out of the question because he didn’t want to let me or my children go. I ended up in a shelter for battered women for a while until he found us and took me back and treated me worse. My voice became worse and worse until it hurt to even speak. I went to an ENT, neurologist, psychiatrist and they all said that nothing was wrong with me. Then, I began to whisper and nobody could hear me. I wanted to work but who would hire a person who wasn’t audible? I felt sorry for myself and tried to hurt myself – but didn’t for the sake of my children. I didn’t want them to be raised by an abuser! I hated the phone! When it would ring I would tell my kids to answer it and tell whoever it was that I was unavailable. When my husband would come home from work, he would demand his supper and if it wasn’t ready he would start yelling on the top of his lungs. My kids were always afraid of him but wanted his attention. He never bonded with them – never bottle fed or changed their diapers. Never went to their school plays – but yet they wanted his attention. So, during this terrible ordeal that I went through, I lost my mother and my husband was heartless to say the least. A few weeks later, I read an article in the paper about voice disorders and my eyes lit up! As a result from reading the article, I went to a support group in Manhattan at Mount Sinai for people with speech problems. Of course, I went with my then husband who mocked me all the way going to support group from Brooklyn to Manhattan. It was a one hour trip from hell! I dried my tears when we got there and welcomed with opened arms by Midge Kovacs and Adrienne Simons. I didn’t feel alone or isolated anymore. There was a temporary treatment for me called, “Botox” and supposed to work very well with people with SD. I was skeptical at first and then after four meetings, I scheduled an appointment. with Dr. Brin and had my first Botox injection and felt on top of the world! I had a voice again! I felt very lucky and fortunate to be part a wonderful support group. They were “my family” and I was part of theirs. My children didn’t recognize my voice and my husband was shocked. Eventually it wore off and I took another one and many more after that. I met wonderful people at this support group and so amazed of how many people like me who are going through the same torment, agony, frustration and sadness over this disease with NO cure – only a temporary one. It makes us stronger if we stand together as one. May God bless all of us that face challenges like these! back to top Eileen Giddings Living with Spasmodic Dysphonia A friend of mine at work betrayed me. I confronted him and he threatened me. I informed my employer and I was not believed. I had to work with this person very closely every day. I stopped talking to him and the tension in the office was VERY bad. After a couple of months, my voice started to change. I whispered a lot in the office. Then people would ask me if I had laryngitis. It happened gradually, but my voice was very tight and strangled. Because of this emotional stress, it had triggered spasmodic dysphonia. I didn’t really know what it was at first until I saw Dr. Morton Cooper, speech therapist, on Oprah. Without knowing, he gave me a diagnosis from the TV. Speech therapists and doctors did not know what was wrong and could not cure me. I could no longer sing in the church choir. I knew it was from stress, so every day I would wake up and say to myself; “Today I am going to be calm and I am going to talk normally,” Of course, that never happened. My mother was very concerned about my voice problem. She was not very pro-active about her own health and hated to make phone calls about her own problems but one day, she called a local Hospital and got the name of a doctor who could help me. I went to the doctor and he gave me Botox. The first treatment was OK: a little breathy, but wore off. The second treatment 6 months later was awful. It was too deep and I could not swallow anything for 3 – 4 weeks. Having hypoglycemia and having to swallow pills, etc., this was not good for me. Actually it was torture. I was left having to eat warm liquids and suffered with head aches, dizziness and tiredness. The third treatment was OK. The fourth treatment was too deep and I could not swallow again. That was about 4 years ago. I have not had Botox since. I have since left that company and for the past two years have been looking for an office position. I am 57 with a voice disorder. I am listed with 16 employment agencies. I feel that the minute they hear my voice, no matter what my experience, they will not hire me. My voice is VERY BAD on the phone. People ask me if I’m OK? One time a person thought I was my husband’s mother. Talking to a voice activated answering machine is impossible. Some people ask me to spell things on the phone if they cannot understand me. That makes me more nervous and my voice worse. Even though I have this disability, I am very persistent. If I have something important to say, I will say it. I don’t dwell on my voice problem unless I feel discriminated against because of my job search, but it is their loss if they do not hire me. I find that some professionals who are trained to listen to people do a better job understanding me such as health care professionals. I have been to a couple of support groups. My voice is better than some and worse than others. Out in my regular life, I have only come across two other people with the disorder. The most important thing I have learned is to be more understanding of people with disabilities and that I cannot control everything of my own body. I also have cervical dystonia. My neck pulls my head to the left. I guess you would say it is mild. Most people do not notice it but I fight all day to keep my head straight. The worse time for me is at bedtime. I have to take muscle relaxants to help me get to sleep. I am also noticing when I am writing my hand will jerk and my letters on the paper are messy and crazy and not neat. And when I am brushing my teeth, my right hand will jerk around. I have not had this diagnosed, but I feel it is related to my other two dystonias. Well, this is how I live with dystonia. My husband has hearing loss and I cannot talk, so between the two of us, it is like a comedy team. You know, even though my voice is awful, I could have worse problems. back to top Adrian Go I was in medical practice until the 1990's. Gradually during history taking, the patients kept staring at me, followed by the same questions again and again, "excuse me?" Also my dictated reports came back with blank spaces. I then noticed that I was stuttering and that I was exposing myself to liability for medical malpractice. I retired in 1999. Went to consult multiple ENT doctors, was told that I had spasms of the vocal cords, cause unknown, and that the treatment was Botox injections. I decided to wait as I knew that it wouldn't kill me right away. My voice never returned to normal. This has caused a severe psychological blow which is now permanent. Telephone conversation is very difficult, face to face conversation is also not spontaneous. Currently I use my remaining life span with manual work for volunteering jobs. back to top Concetta Griffin I am falling down a deep hole of blackness. I can not stop myself. I feel I'm smothering. What is happening to me? I need to wake up from this descent into sadness. However, as much as I struggle, my nightmare has gripped me with its tenacious hold and there's no going back to normalcy. I wake and find I am still living the nightmare. It's name is Spasmodic Dysphonia and it just won't go away! It began when I was singing in my car one spring day in 2005. I just couldn't hit some notes. My voice would crack. Several months later something was invading my voice. At first it was a mild nuisance. It started to impact my job as a telephone operator. My doctor thought perhaps it was nodules, allergies, etc. After several months of tests and a visit to an ENT doctor, a diagnosis of SD was arrived at. What a strange condition. I had never heard of it before. I didn't like the prognosis. There was no permanent cure. What on earth was happening to me? What did I do to deserve this? Why is it so hard to talk as I push out my words? Why when I cry, laugh, speak emotionally, whisper and yawn, my voice comes back temporarily? Of all the forms of SD why did I end up with abductor, the rare form of the disorder which is the most difficult to treat? Angry questions with no real answers. For the next year, I tried speech therapy that didn't prove helpful. As my voice got worse, the big guns were brought out, Botox! The gold standard of treatment, albeit, temporary. I had high hopes it would answer my prayers. My voice would make a miraculous improvement and all would be well again in my world. I could resume working and socializing. After 6 treatments the conclusion: it was not working. Hopelessness, frustration and anger set in. Why me? My nightmare had arrived. During 2006, I cried rivers of tears at work and at home. My close friends and family knew I was hurting, but didn't know how to help me. I lost my job and life took on an oppressiveness. I was no longer like everybody else. I was ashamed and embarrassed of how I sounded. I could no longer express myself intelligibly or eloquently. I didn't want to socialize as people would look at me with pity, telling me gently not to try and talk, that it would get better and when would it be fixed. I was down to a whisper, using e-mail, avoiding phone calls and writing my conversations in noisy environments. Even ordering or asking for instructions was sheer torture. The loss felt profound and the sadness overwhelming. I had to take a grip on my life. I reached out to others in the SD community as well as other disabled people, started a support group, sought out counseling for my depression and learnt everything I could about SD. I tried to meditate, to find a higher purpose, a semblance of meaning. I craved peace of mind to the chaos of my journey with SD.. Eventually a degree of acceptance started to occur. I felt my life could go on though it would not always be easy. In the summer of 2007, my voice made a tremendous improvement. I don't know if it was due to some speech therapy or a remission. It lasted for almost a year, but started to deteriorate again in the summer of 2008. It's been a blow. I'm back on the roller coaster of SD. I feel the old emotions welling up. I struggle with all my being to get hold of this new reality. This condition is so unpredictable. I do not know where it will take me now. At times like this I say to myself the serenity prayer: "God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference." I cannot change my SD. I can accept its challenge with courage. I will not fall in the abyss, but try to rise above it. Potent words for a disabling condition that takes away my voice, but not my spirit. One day I will be able to sing again! back to top Jesse Hart Never Give Up In the spring of 2000 I began to lose my voice. Initially I thought that it was the result of laryngitis or some kind of throat infection. I went to see an ENT. After looking down my throat with that horrible thing that goes through your nose, he then referred me to a speech therapist. I became incredibly confused. I had always considered myself to have a decent vocabulary, and, at the time, I had been speaking for about 32 years. I mentioned this to the ENT and he didn’t seem to care. I arrived at the speech therapist a couple of days later and, as we were talking, he instantly recognized what he called spasmodic dysphonia. I had never heard of this and neither has Microsoft Word according to the squiggly line below the word “dysphonia”. I was then referred to a specialist in my area that performed Botox injections. For the next 7 years, I fought with this incredibly frustrating disorder. For me, Botox injections lost their effectiveness after each one and after the sixth one, the results were reversed. After the injection, I lost my voice for a month and then my voice lasted for 3 weeks. After that I gave up on conventional Botox and decided that I was just going to live with it. That didn’t last long. I found out later that I was never going to give up. My speech continued to worsen. I was unable to talk on a cell phone or place an order in a restaurant. I flew to the UCLA Med Center to have denervation/renervation surgery. This had no effect. I saw a specialist at Washington University who suggested speech therapy. I suggested false chord injections. He didn’t go for it. So I went to speech therapy a couple of times a week for several weeks. This also had no effect. I flew back to the UCLA Medical Center and had a laryngoplasty. This just gave me a deeper scar. I determined to not give up. I met an otolaryngologist that worked in the same organization with the physician that administered my first Botox injection. He, an internationally recognized speech therapist, and I discussed my idea about injecting the false chords. They both agreed and I began this therapy. It worked. But much like traditional Botox, there was down time. Unlike my experience with traditional Botox, my voice did become stronger. One day in July of 2007, I received an email newsletter from the NSDA. There was a link to the message board. For some reason, I decided to click on it. This is the first time I had been to the bulletin board. The first post I saw was from someone that said something about “Anyone try this medication?”. I read the post and I learned about a drug called Artane. I thought “What the hell. I’ve tried everything else”. I contacted my new and much appreciated otolaryngologist to discuss. I looked up the drug, read about the side effects, and took this information with me when I went to see him. We both agreed that the side effects were minimal. I told him that I had absolutely NO expectations. We discussed the dosing. I went home and took my first dose. The next morning I woke up and, though a little weak, I could speak. During this time, I became very knowledgeable in the specialized field that I work in. My role went from coordinating to leading to project management. I even became project management certified. My salary increased exponentially. I did all this without a voice. Though frustrated, I learned to adapt. My writing skills became enhanced through email. I learned to schedule one on one meetings in quiet rooms where my whispers could be heard. I insisted interviews for new positions face to face where I could sell my skills and the focus would not be my voice. In the beginning, a friend joked the reason this happened was God’s way of shutting me up. I did have a way of always expressing my opinion. When SD became a large part of my life, I learned to only speak when absolutely necessary and people listened. It has been a year and three months since I have been able to speak. Being in a professional position, I know now exactly when to speak and when to keep my mouth shut. back to top Susan Hasse About 11 years ago I started noticing that my voice got very strangled sounding when ever I was nervous. It got worse and one day my daughter was watching a "talk" show. They had people on with unusual voices. She called to me and said this lady sounds just like you!. That is when I knew I wasn’t just nervous that what I had was real and had a name. The diagnosis was confirmed by several doctors and they began Botox treatments. The first shot I had made me lose my voice almost completely for about a month. Then my voice came back more strangled than ever. I had more Botox treatments, maybe 10 or more, and only one worked. The doctor advised to just live with it. I had to quit my job as an occupational therapist because the patients could not understand me plus it was physically stressful on me about one year ago I was diagnosed with an autoimmune disease they gave me two kinds of medications for it. And the one kind made a dramatic improvement in my voice. I no longer struggle as hard to get words out, however I am sometimes hard to understand. To me my voice sounds almost normal but to others it does not. People can not believe how improved my voice is. back to top John Hatfield I was diagnosed with Spasmodic Dysphonia in 2002. I am a 39 year old male, and the disease has recently progressed, and the quality of my voice is deteriorating. In 2002, I was a five-year veteran of the Los Angeles Police Department. I was working in one of the most violent neighborhoods in America. Speaking on the radio became difficult, and I sounded as though I was nervous for the most routine situations. Needless to say, my peers took advantage of giving me a hard time. I met with Dr Berke at UCLA and he diagnosed me. He advised of the Botox treatment, and I willingly accepted any treatment that offered me a chance to get my voice back. Without researching the treatment, I soon realized that I had made a major mistake. I was in court, trying to testify to juries, I was in foot pursuit of criminals, and my voice was weak, I sounded like a mouse. It was so embarrassing. A gang officer was supposed to be so strong, but my voice was so weak. I kept the diagnosis from everyone, I thought that some how, some way, it would disappear. I discontinued Botox treatments and dealt with the disease. Over the following years, my voice caused me numerous uncomfortable situations. I remember one instance when I was in traffic court. I wanted to convey to the Judge that the driver that I had cited was guilty. I stood before a court full of police officers and those that were disputing their citation. My voice sounded as though I was afraid, stumbling to find the words, even though I knew exactly what I intended to say. I lost the case because I couldn't speak properly. My peers looked at me as though I was a rookie as I exited the court room with my head hung low in disgust. In 2004, I became the center of an international police incident after pursuing a car theft suspect. I used force, and the incident was being videotaped by the numerous helicopters above. Reasonable minds came to different conclusions about my actions on that day. This is not the forum for me to try to articulate my actions. My case was high profile, and I had to articulate my actions in court. Admittedly, I was very nervous for the proceedings, and that only made my voice worse when I spoke before the panel. I remember my lawyer asking me "what the hell is wrong with your voice". I had to explain a disease that no one had ever heard of. I lost that case, and at 37 years old, I was out of a job, and out of a voice. I went back to school, and I am very close to becoming a registered nurse. I love serving the public, and especially those in need. Unfortunately, this career requires a voice too. During my clinical experiences, I have struggled to communicate with my patients. I sound like I'm a scared little kid when I try to provide patient education. I spoke with my primary physician, and he referred me to an ENT doctor. That doctor advised me that my voice was like this because I have polyps in my nose. When I tried to educate him about SD, the incident became heated, and he blew me off as though I was a fool. After a battle with my new insurance company, I was allowed to see Dr Berke again last week. I got my second Botox injection, and my voice sounds like a mouse again. I still keep my disorder to myself, and pray to God that I'm able to get my voice back. Working in the medical field has taught me that medical problems can be so much worse than this. I never complain, and I keep my head up. I could go on and about how this has affected me. I have no desire to be considered for the contest, I just wanted to write about my voice for the first time tonight. back to top Diana Hause My Story In the early part of 1992 I was in the middle of a divorce which I really did not want to be going through. It was a very stressful time for me, but mostly just heartbreaking, and I had experienced life enough by then to know that I would eventually get over it. About 5 months after the divorce finalized, I noticed that my voice started shaking. It was a tremor-like shake that made me sound like Katherine Hepburn in her later years, suffering from Parkinson’s disease. At first I wasn’t too concerned about it, thinking that it might just be some sort of “bug” that would soon go away. Well, it didn’t go away, and I soon became concerned as my clients ( I’m a realtor) were starting to question me about my voice, constantly asking me if I was all right. I could tell now that this “voice thing” as I called it, was not readily going away so I started visiting ENT specialists, speech therapists, and even therapist therapists, all to no avail. None of them knew what was going on with me and I went home undiagnosed for almost 2 years. One therapist even told me that I merely “needed to calm down”. Yeah, right. One day, during an unrelated Dr’s visit at the Straub Clinic in Honolulu, an ENT specialist heard me and told me that he was pretty sure I had Spasmodic Dysphonia and that I needed to see Dr. Brian Liu, who specialized in this voice condition. I was elated beyond words and made an appointment with Dr. Liu right away!! During my initial appointment, the doctor probed, did some voice tests and then told me he was certain I had Spasmodic Dysphonia but that there really was no cure for it at that time – only a treatment of the symptoms. He explained that the treatment used by most of his patients was botox injections to the vocal cords which temporarily paralyzed them, thus prohibiting them from coming together and causing the tremors. I was just so happy to have finally found someone who could help me that I was open to anything. I started the injections without hesitation. Of course it was scary but the alternative was not an option any more. In 1998, I met my present husband and moved to Madison, Wisconsin. I continued the botox but found that I required higher and higher doses for satisfactory results. It appeared that my body was becoming resistant to the Botox and the ineffective injections was taking a toll on my emotions as well as our pocketbook. After about 3 years of that struggle, I went online to search for alternatives to the Botox treatments. My research led me to a surgeon named Dr. Gerald Berke at the UCLA Medical Center. Dr. Berke specializes in a procedure called deinnervation/reinnervation of the nerves to the vocal cords. . In layman’s terms, he cuts the existing nerves to the vocal cords and replaces them with another set of the patient’s nerves. After thorough research on Dr. Berke and his specialized practice, I scheduled a visit to UCLA Medical to have the surgery on April 3rd 2007. My voice now sounds perfect and I have absolutely no regrets! Everything went without a hitch and I thank Dr. Berke every single day for “giving back my life”. It wasn’t until after I got my voice back that I realized how much the Spasmodic Dysphonia had lowered the quality of my life. Where once I was a bubbly and outgoing person, I had retreated inward and became a homebody unable to create new relationships. I now am a member of several social groups and have resumed my real estate career full speed. I wanted to find some way of spreading the word of my wonderful experience and am happy to have found this opportunity to do so. back to top David Hedley In October 1997 I made a phone call at work to a colleague. I opened my mouth and could hardly get my words out. My God, what has happening. My immediate fear was a stroke, but I was functioning correctly, I was fit and well I could only put it down to some kind of virus maybe I had picked up. Maybe it would disappear as most things do given a couple of days. But from that moment onwards I struggled to talk. It was worse on the telephone where I found I was straining to be heard. I could whisper, sing, talk in a falsetto voice (nope don’t think I’d get away with that down the pub) but couldn’t talk with my natural voice. It was two years before I was given a correct diagnosis. My speech therapist had suspected nodules on my vocal chords which he operated on. This in fact made my problem worse. After two or three other minor exploratory operations I gave up hope. It was two years later that I discovered the condition of Spasmodic Dysphonia on the internet and realized that this could well be what I may well have. I returned to my therapist who immediately disagreed with my self diagnosis no doubt not wanting to lose face. However, after much persuasion from me I got him to administer botox which he performed in an operating theatre with a camera up my nose and down my throat to assist in where he was to put the needle. I was unaware at the time how much more simple it could be performed by someone with experience and was in fact a five minute procedure with little or no stress involved. The procedure was to some degree a success. I experienced a breathy voice but a voice that seemed to eradicate the tremor and my voice seemed smoother albeit far from perfect. The good voice lasted about six weeks but my medical insurance company were not going to be very happy with me if I started claiming over £1,000 every three months. So Botox shots on a regular basis were totally out of the question as I simply couldn’t afford them. It rapidly became awkward and embarrassing at work. I bluffed my way through for much of the time but presentations and meetings became more and more difficult. I could only blame my lack of voice on colds and flu for so long. I had recently been promoted in my job but suddenly found people losing interest at my inability to keep their attention for more than a sentence or two. My new boss who had recently arrived from Australia a couple of months before I developed the condition and who had initially taken and instant liking to me slowly but surely became different and I knew that because of my inability to perform normally that my days were numbered. It was in August 2000 when I lost my job after 27 years of loyal service with the same company. I have the 25 year gold service watch to prove it. A rang a good friend of mine who had also been a client for many years and explained that I wouldn’t be playing golf with him in my ex firms golf day. “Ex firm” he repeated “I don’t believe it how could they do that to you. Come and see me on Saturday for a chat” I duly went to meet him where he not only offered me a job put he was so keen for me to join him that he offered me a partnership. I bought into the company. I managed to bring a lot of business with me and we have grown the firm incredibly over the last eight years. My personal circumstances have not only improved but I discovered a Botox clinic funded by our National Heath Service scheme we have in the UK which is free. They say that every cloud has a silver lining and I wonder where I would be now, probably just plodding on until retirement doing an average job for an average days pay. I now own half of a thriving company which employs 70 people, runs 30 trucks and has allowed me to tour the world as my passion has always been travel. I have visited China, Thailand, USA, Canada, Cyprus, Crete, Greece, The Arab Emirates, Italy, South Africa and several islands in the Caribbean. I have also had tremendous support from my friends and family particularly in those dark, early days and although I realise that there is no cure have learnt to live with this most frustrating, debilitating condition which has largely gone unrecognised in the world in which we live. back to top Pat Hill Life with SD has taken many turns over the past thirty-eight years. I have learned from it and so have others who know me. At the onset of SD, I learned or thought I learned to cope with SD both privately and publicly. I first had to feel comfort within myself and then I could deal better with the public. I never came to accept my SD because I didn't want it, but I learned to adjust to it by using speaking and non-speaking strategies to make my life easier while communicating, like avoiding certain words, substituting words, using body language or gutteral noises, speaking softly or speaking in short phrases. I learned to trust people who were open to me and I excluded people who were close-minded. I became an educator of SD so people would better understand the disorder. I found out that when I opened up, others did too and shared their problems as well. In that, I found that I was not alone. I also became more compassionate towards others with disabilities and found myself reaching out to them more readily. SD has helped me live my life more boldly in making me a more passionate person about things that truly matter in life, caring, compassion, speaking up, and becoming active in what you believe. It has also made me an advocate for myself and my rights as a citizen and a contributing person in our society. I have grown strong in this regard and have assumed leadership roles because of my determination not to take a backseat when people are suffering or there are injustices in our world. Since my surgery for adductor SD, I have learned and am still learning that I have truly been my own worst enemy in dealing with SD. I developed phobias about interacting in public, fear and hatred of using the phone, fear that I wouldn't be accepted socially, and isolating and insulating myself from others. I am now overcoming those things that I imposed on myself. So in summary, I'd say that I have evolved because of SD. I know that if we don't fight for ourselves, how can we expect anyone else to do likewise. I have taken leadership roles at work, in the community, and in my own personal life. I now know my strengths and limitations in the face of adversity. Most importantly I'm not going to lay down and feel sorry for myself. Currently I'm on a track of self-improvement to correct how hard I was on myself and to help find a cure for SD and help others know their worth, because we are NOT SD and it is not what defines us. back to top Ed Hird When I was ordained twenty-six years ago, I had no idea that my very life-line, my ability to speak, would be tragically stolen from me after only half a year of ordained ministry. The condition is called Spasmodic Dysphonia. It was caused by a rare viral throat infection which happens statistically to one in five million people, something like winning the lottery in reverse. Spasmodic Dysphonia causes the vocal chords to over-adduct (over-shut) on a spasmodic or intermittent basis, cutting off words or parts of sentences. Spasmodic Dysphonia is not caused by stress, but sometimes is more noticeable under stress. Twenty-two years ago, I had surgery at Vancouver General Hospital (VGH) by Dr. Murray Morrison in a successful operation that allowed me to speak again and go back preaching after being off for a year. The words of Paul meant so much to me during that year’s sabbatical: Keep your head in all situations, endure hardship, do the work of an evangelist, discharge all the duties of your ministry.” (2 Timothy 4:5) My GP thought that I would never preach again. I refused to believe his assessment, as I had received a strong word from the Lord Jesus that he would be restoring my voice. On May 25th 1982, God answered my prayer through Dr. Morrison cutting the left laryngeal nerve of the left vocal chord, which stopped the adducting/shutting of that chord. As the right chord still over-adducted/over-shut, it balanced out. After my surgery, my voice was free of the spasms, but was initially much quieter and more breathy. This successful surgery was still proving effective until August 2003 when I developed laryngitis that wouldn’t go away. To deal with the laryngitis, I took nine months of helpful speech therapy with Margy Smith, a very gifted speech therapist on the North Shore. She took me a long way along the road of recovery, but finally my otolaryngologist (ear, nose & throat specialist) Dr. Murray Morrison recommended that I take the Botox treatment to loosen the over-tightness of the vocal chords. Dr. Morrison's investigation showed that my left laryngeal nerve had re-enervated or regenerated itself and thereby contributed to an over-shutting of the vocal chords once again. This was the reason for my susceptibility to laryngitis over that year. The over-shutting of the vocal chords is like a door continually slamming shut. After careful research, prayer, and reflection, I went ahead with the Botox treatment that Wednesday at VGH. It took about 5 minutes! The Botox treatment by Dr. Murray Morrison allowed a fine-tuning of the benefits of my previous 1982 surgery. The Botox was injected into both laryngeal nerves, thereby loosening the vocal chord shutting (adducting) on both sides. When I told people that I had a Botox treatment, some people assumed that I was worried about middle-age wrinkles! But in fact Botox is primarily a medical therapy to deal with a range of dystonias, including vocal chord spasming. My wife and parents were thrilled by the elimination of the spasming through the Botox treatment. The Botox treatment lasts for four to five months, and then is redone by Dr. Morrison at VGH. It initially over-loosens the vocal chords a bit, with the result that my voice is somewhat breathy and quieter to start with. Over the next few weeks, the vocal chords gradually tighten again, resulting in a less breathy, less quiet voice. I am so grateful to God for advances in modern medical science that help people like me in such practical ways. I am so grateful to God for people like you reading this book, many of whom I know have been praying for me. I have had several people specifically pray recently: “Ed Hird will not be silenced”. I am very happy with this new medical step. It is so exciting to be able to speak freely without being cut off in mid-sentence. Doctors make a difference. Prayer makes a difference. There is no competition between medicine and prayer. They fit together, hand in glove. Thank God that prayer and medicine can be best friends. Thank God that he restored me so that I could preach the Word, in season and out of season! back to top Vicki Hodgson I am a volunteer Area Contact for the National Spasmodic Dysphonia Association (NSDA www.dysphonia.org). Spasmodic Dysphonia is a specific form of an involuntary movement disorder called dystonia that affects only the voice box. To hear voice samples of the disorder visit http://www.dysphonia.org/spasmodic/symptons.asp . I have the more common Adductor type where speech causes abnormal involuntary excessive contraction of the muscles that bring the vocal cords together affecting the air-flow through the vocal folds. My condition first manifested in the 1980's. Initially I lost the mid range in my voice, along with the ability to sing professionally. Over the years I always felt awkward when people suggested I sing as I had done previously because for some unknown reason I couldn't utilize my full range anymore. I missed singing very much and had to resign myself to it being something I could no longer do. Fast forward to child bearing years and I was self conscious that other parents might think I was uninterested in cheering for my kids at their sports events. The truth was if I tried to project my voice, it cracked badly and I choked on the words. Mid-life came around and the condition worsened considerably. It got so I could only whisper and people thought I had a cold or throat infection that hindered my speech. I was constantly being asked if I was sick, I endured jokes about my "throaty sexy voice" and many a well intended remedy was offered to no avail. When it became painful and exhausting for me to speak and it was so evident that other people expressed growing concern, I knew I had to seek an answer and hopefully treatment. With an estimated less than .2% of the population in North America having this rare disorder, it would take doctors, specialists, numerous tests, exams and psychiatric evaluation over a period of more than 2 years to at last uncover the cause. I underwent allergy and reflux testing and treatment, throat scopes, MRI, barium swallow x-rays, speech therapy and psycho analysis during that time. After the diagnosis 3 1/2 years ago, it became apparent to me that continuing in the highly stressful job I was in and enduring the discomfort, inconvenience and daily reminder of this debilitating condition was only depressing me. I left a lucrative corporate career in retail and went into a business for myself where I could direct my environment. Through 4 annual treatments (Botox injections into both vocal cords) I am able to manage the condition as presently there is no cure. With every treatment there are 3 stages, the initial weak whispery voice (when I can easily choke on my own saliva), a period of having a clear normal voice, then the deterioration and return to spasming of my vocal cords before the next injections. It has been 3 years, I've opened a 2nd store, my confidence has blossomed and I'm using the voice I found to make a contribution in my community through volunteerism. I'm a Director on the Board of Tourism for Richmond BC, I'm on the Leadership Counsel for our Church, I'm a member of the Steveston Village Tourism Committee, a sponsor for the Richmond Nite of Hope (a fundraiser to aid the fight against Breast Cancer) and an Area Contact for the NSDA. As an Area Contact my role involves providing support, encouragement and resources to individuals newly diagnosed or suspected of having SD. I'd like to help raise public awareness, to remove any doubt of the credibility of those with the disorder and to reach out to individuals who may be in need of support. I'm proof that it can herald a new beginning and lead to greater rewards. back to top Francie Hornstein The Voice Thing Unlike most other people with Spasmodic Dysphonia who may take years to get a diagnosis, I knew immediately what was wrong with my voice. Both my mother and older brother had SD. My mother lost her voice in May of 1968 in her late 40’s. Doctors told her she had a “hysterical conversion disorder”, a diagnosis given mostly to women. In my mom’s day, there was little solace for people with SD. She referred to her SD as, “this damn voice thing.” Three years after my mother’s diagnosis, when my brother Bennett was in his early 30’s, he began having periods of difficulty speaking. It was clear when we talked to him on the phone that he was developing SD because he sounded just like my mom. My own SD began in 1978 when I was 30 and had bouts of a quivery voice. I can’t say that having SD is any kind of great gift from the universe. I’m not one of those “thank God I got SD” kind of people. I have good days and bad days with my voice. At my worst, it takes a massive amount of energy to get my voice out and even then, it’s a strangled, distorted sound. Other times, it isn’t too bad, though I don’t think I ever have a normal voice. Sometimes I feel as if the more I want my voice to work the worse it sounds. But my mother and Bennett were both role models for how you can live with SD. In their day, there was no Internet. I don’t think either of them ever talked with anyone else who had SD. It was our own family thing. Today, Internet chat rooms and bulletin boards provide immeasurable support, information, and good humor. Those of us with SD love the Internet and e-mail where our words can fly off our keyboards with much greater ease than in speech. I saw my mom and Bennett get on with their lives without a lot of self-pity. Neither of them shut themselves off from social, family or work life. They just did the best that they could. I know SD from both sides. I know the feeling of discomfort sitting next to my mom or brother at a noisy restaurant. The choice was either to limit conversation with them because you know it was hard for them to talk in that environment or to engage in conversation with “What?” “Could you say that again?” “Sorry, I didn’t hear you.” Now, I’m that person who someone has to sit next to at the restaurant. The penalty for not engaging in this challenging conversation is social isolation for the person with SD. Bennett was a public defender and I’m a medical social worker, both jobs that require a lot of talking. After Bennett lost his voice, he began writing all the appeals to the Nebraska Supreme Court for the Omaha Public Defenders Office because there was more writing and less talking. But he continued to make oral arguments at the court and you can bet all of the state Supreme Court justices knew about Spasmodic Dysphonia. He even argued a case before the United States Supreme Court with his SD voice. So now I follow the example Bennett and my mother set for me. I love my work and won’t let the SD limit me. And, I need the income! I’ve learned to adapt by telling clients and new colleagues that I have a voice disorder and that they should feel free to ask me to repeat something if they can’t understand me. This clears the air right from the start. Otherwise, I find that people wonder or worry about my voice instead of listening to what I have to say. I know that my voice is sometimes hard to listen to. But I appreciate my friends, family, colleagues and patients who stick by me and listen past my voice to what I have to offer. I don’t want to minimize the burden of having Spasmodic Dysphonia. Talking is exhausting. Having a strange, strangled sounding voice can be a barrier and a put-off. Being in the world with a voice disorder, like any other visible or audible disability can make you a bit of an outsider. But the important things in life are still with me: family, friends, work, food, books, music and more. It’s all still pretty good. back to top Helen Hunting As I approach my 78th year, I would like to reflect upon 27 years of living and coping with Spasmodic Dysphonia. I find it easier now that I have put aside the anger, depression, and frustration that I felt originally, and have accepted a lifetime of change. The keywords ‘It could be worse’ have been my mantra. Soon after my 50th birthday, I gradually started finding words that would catch in my throat (mainly vowels). I strategically began substituting ‘bad words’ with ‘good words’…example, instead of anthem, I’d say song. Even our pets were named Jill, Joy, and Snoopy. This deception went on for a long time, and since I was only fooling myself, I finally confided in my husband that I thought I needed help. I literally went from one physician to another. The very best ENT’s that our sophisticated medical community had to offer, and still no diagnosis. All I heard was stress, allergies, I should see a speech therapist, stress, try bio- feedback, etc. etc. Finally I took the bull by the horns and went to Mayo Clinic in Rochester, Minn. It was there in 1983 that Dr. Arnold E. Aronson diagnosed my condition as Spasmodic Dysphonia. I was genuinely thrilled to have a name for this monster that had been stalking me, but also deeply disturbed by his comments that there was NO treatment, NO cure, and that it would probably get worse with time… cause unknown. Now came the mental adjustment. How was I to cope with this the rest of my life? I was young, we had a daughter in High School, two sons in college, and my husband was a furniture manufacturer executive. I was a homemaker, enjoyed sports, and was deeply involved in volunteer work. As my voice became tighter, I avoided talking on the phone…it was embarrassing and exhausting. I would shop in different store locations to avoid running into anyone I knew, and if I saw a familiar person heading towards me, I would duck out of sight. What I had become was a recluse. When we went to a restaurant, I would order my food in a grunting manner, whereby all, and I mean ALL, the neighboring tables would turn and stare. I have learned the plight of the handicapped first hand, and have a genuine respect for those afflicted. This behavior went on for two and a half years. I really got to know myself like I never had before. I possessed more self- discipline than I had ever dreamed of, and an amazing amount of patience. Reading and handiwork became my vocation, mixed with tears and self-pity. I tried desperately to keep my attitude and spirits up, however, being a social person, I began losing the battle and began to buckle. I put in a call to Dr. Aronson at Mayo Clinic and told him that I needed a good psychiatrist or a miracle… I was at my wits end. He said that a Dr. Herbert Dedo in San Francisco had just developed an operation to relieve this situation. (RLN - recurrent laryngeal nerve section). I jumped at the opportunity, and in the October 1986 I went to California and had the operation, which was a huge success. Just imagine how delirious I was to be able to speak normally. This lasted three wonderful years and then my voice began to tighten up again. He recommended a CO2 laser thinning of the paralyzed vocal fold. Once again we traveled to San Francisco. The surgery was the morning of October 17, 1989 at the UCLA Medical Center, and the major earthquake occurred at 5:04 p.m. that evening (another story). We evacuated and haven’t been back since! The laser treatment sustained me for a year or so, and then the advent of Botox injections came to my rescue. Dr. Mitchell Brin at Columbia Presbyterian NYC, followed by Dr. Andrew Blitzer at St. Luke’s-Roosevelt Hospital NYC, have been my mentors since 1991. I continue to have Botox injections approximately every three months with good results. To summarize my life with SD…it has been a humbling experience with a great many bumps in the road. Certainly a time for self examination and character building. I do believe I’m a better person as a result. I am more sensitive and sympathetic to other peoples needs. It’s been my cross to bear, not fun at times, but “It could be worse.” back to top Alyce M. Jacoby I thought it was just a case of laryngitis. It took two years of misdiagnosis, speech therapy, and frustration before Dr. Victor Vermuelen in Columbus, Ohio told me I had a chronic and permanent condition called Adductor Spasmodic Dysphonia. That was the summer of 1991. I remember the moment very clearly. After sticking a fiber optic camera up my nose and down my throat and having me make vowel sounds that came out as radio static, he asked me if I could sing! So I sang an acceptable rendition of Happy Birthday to him. He nodded knowingly and then told me I had a condition called Adductor Spasmodic Dysphonia—it was chronic and permanent. There was no known cure. I was in shock. There was, he said, a new treatment offered in some parts of the country that involved getting injections of Botox directly into the vocal folds. Since I’m needle phobic, I knew that would never be an option for me. . . But desperate people do desperate things. I couldn’t talk to my grandchildren on the phone or read them stories when I was with them. The microphone I used in the classroom just wasn’t doing the job. It was becoming increasingly difficult to make myself understood. I think my family was as frustrated as I was. My daughter in Texas called to tell me that there was a Dr. Stephen Schaeffer at the medical center in Dallas who treated SD by giving Botox injections through the neck and an excellent speech pathologist Susan Shulman, who specialized in post-treatment therapy. So, I girded up my loins and went to Dallas. It was a surreal experience. I was taken into a dimly lit operating room illuminated only by the numerous equipment screens. I was then wired up from head to toe to monitor my heart rate and get a picture of my throat. I practiced deep-breathing relaxation techniques as the doctor and his team guided the injection directly into the vocal folds through my neck. I made it through without fainting. The rest is history. I was speaking with my daughter the next day on the phone when she said, “Mom! Your voice!” To me, it was a miracle. I could say “salami” and pronounce all three syllables. I have since had almost fifty Botox treatments. After I experienced a scary series of three injections with no results, and worrying that I had developed an immunity to Botox, I went to Dr. Stewart Adam in Dayton, Ohio. He injects through the mouth and has devised for me a successful pattern of uneven injections. I have been going to him ever since with fantastic results. It is well worth the 90-mile trip from Columbus to Dayton. He has a bright office, an interactive technique, and he actually makes me laugh during the procedure--quite a difference from my first experience. I’m retired now. I’m happy and contented. I get my injections about three times a year and keep up with the research and educational opportunities offered through NSDA. I can’t over emphasize the benefits of attending national conventions. They are empowering; and, doubly beneficial if you have family participating and supporting you. I’ve discovered that the more proactive I am, the more confident I feel. In 1996, I participated in the intensive three-week Precision Fluency Shaping Program at the Eastern Virginia Medical School. It has helped me immensely. When my voice is at its worst, I can make sound; I no longer feel helpless. I believe this is a big part of my mental health. Recently I attended our first SD Support Group meeting here in Columbus. As I listened to the participants tell their stories, some in extremely halting tones, I realized how much we have to offer each other in stories of courage, example, and support. Thank you for the opportunity to share mine. back to top Richard C. Jenkins I lost my voice around Labor Day 1994. All I could manage was a whisper. A throat doctor found bumps on my vocal cords. These were “contact ulcers” from vocal abuse. He said he could shave them off—Six weeks recovery period without voice-or shrink the bumps with drugs. I chose drugs—strong cortisone for a week. No help there. The bumps were gone but I still couldn’t talk. Panic set in; I am a trial lawyer but cannot talk! How would I ever do my work? Panic lasted perhaps a year. Meantime I concentrated on muddling through as best I could. I noticed that I was contorting my face and neck while trying to speak above a whisper. That’ll never do. I decided to smile when trying to speak so as not to distract others. It helped me too. I didn’t speak any better, but I felt better about it! Then I got to thinking: the hell with talking anyway! I want to sing! I found an opera coach—Robert Wayne Turner of Virginia—and took lessons for six years by long distance telephone, about an hour early every morning, plus one repetition later that day with the recording I had made earlier. Result: not bad. After two years or so, my 1% voice got 2% or so. After that, there was little improvement. I could sing some, but not speak much. My dear wife died in late 1999, and I quit lessons. I did no vocal therapy for a year or so. In 2000, I was diagnosed with “classic” abductor spasmodic dysphonia. The doctor said treatment of AB with Botox was “a little tricky.” Translation: all but impossible. I resumed with my own rehab program—about an hour a day of scales with voice and guitar. After several years I could speak some. Estimate: about 5% of normal. This is small change, but it was big for me! I could speak well enough to do some business over the telephone. I continued trial work, but with a big change: I planned and prepared far more carefully, because I could not say it several times till I got it right, as before. Of necessity I made everything as brief as possible. This increased the force and drama of what I did get across, which I did not foresee. Results: 1. Listeners paid better attention, because I was hard to hear! 2. The points I made carried more weight, because they were a surprise! The psychology of this is remarkable. Jurors and judges are somehow, for some reason, relieved to see a lawyer who cannot speak well. Go figure. Maybe they feel less threatened. Maybe they feel it will be over quicker. How does this all work? At least one friend, with another vocal disability, suggested it was pity. I was skeptical; people aren’t that ready to feel sorry for others, much less cut them any slack because of it. So what gives? I call it “flying trapeze syndrome.” Everybody’s been to a circus where trained daredevils fly through the air between trapezes. What’s your attitude? You hope they don’t fall, but if they do, you sure want to be there to see it! And when they don’t, you are relieved and clap. The same is true for those listening to somebody who has trouble speaking. You want to be there in case of failure, and may even half expect it, but are relieved when it doesn’t appear. More, the auditor’s expectation is low when hearing one who speaks poorly. Subconsciously, the auditor feels the IQ of a poor speaker must be lower. So when one struggling to speak makes a point with even marginal humor or validity, credit is magnified. There are other more mysterious factors at work here. One example. I appeared to give oral argument on a client’s sentence in federal court. I worked hard to get my presentation down to about 180 seconds—it’s easy, but bad luck to bore your judge. I had good points, briefly and forcefully made. I had it memorized and written out. I began by saying, “Since I do not speak well, I have a sheet to aid the court in following my argument. May I approach?” Granted; he accepted my sheet. Then as I spoke, the judge pointedly ignored my sheet, leaned forward concentrating all his attention, determined to hear firsthand what I was saying!(Sentence: one year one day in federal prison for stealing and belatedly returning $100,000+.) Frederick Nietzsche said, “Whatever does not kill you makes you stronger.” Strange to say, SD-AB has made me stronger—but given the choice, I’d have gladly skipped it. back to top Steven H. Jennings I am now 44 and have had SD for 20 years however it was not diagnosed until 1999. I could never put into words how much SD has affected my life. The ups and downs of my voice has helped me realize that life has its' good days and bad days. We have to deal with problems the best we can. Finding and knowing good friends is the primary lesson I have learned from having SD. I have learned how patient a good friend can be as I went years when people could not understand me on the telephone and eventually I became somewhat of a recluse. To my amazement most of the people that "put up with me" never lost faith in me and were ecstatic when I was diagnosed as treatable. Unfortunately, some people are not as patient and we have to accept that and move on without harboring a grudge. I also know now that it is easy to take things for granted. Your next breath is a miracle when you think about it and we definitely take the ability to walk and talk for granted until it is taken away from us. We have to be thankful for what we have and realize that we should help other people in need as often as we can. Having SD has forced me to live more boldly because I know everyday will be a challenge. Even though Botox is a miracle for SD patients there is never two days in a row when our voice is the same. But having the strength to stand up and face the challenge and not give up has made me stronger. I wish I could say it has made me more outgoing but like most people with SD I tend to be too introverted at times due to the anxiety of not knowing how my voice will be and/or how strangers will respond. Having SD is definitely a life altering experience. But like anything else you can take a situation and make it work or you can make it the worst thing that ever happened to you. I get strength from reading how Jim Valvano stood up to cancer and swore he would never give up. That is my message to people with SD. Life is worth living and experiencing so do not ever give up enjoying what life has to offer you. back to top Judith Jensen It was back in the fall of 2001. I worked for a retail shop/restaurant chain as a retail manager. I started noticing my right eye was twitching quite constantly and then, my voice started to change, sounded strangled. I was fired by my employer. I tried to find another retail management position but my voice just didn't do me any favors. I took odd jobs and then got back into manufacturing (what I did as a youngster). I went to a temp staffing agency and got a job with a prominent computer company and a couple of months later, was hired on full time with the computer company, and then I had insurance benefits. I researched the internet, also John Hopkins Institute website, and I came across a description of what I could possibly have. I had a doctor's appointment with my allergist and told him what I came across and he said my voice sounded like I might have SD but he referred me to Vanderbilt Voice Center in Nashville, Tennessee for further evaluation. Sure enough, I was diagnosed with Spasmodic Dysphonia. I started Botox injections back in the fall of 2004. My last injection was back in February of 2007. I am learning to deal with SD. It can be debilitating at times and also frustrating. I was at the point of taking my social security income because employers wouldn't give me a chance to be the manager I once was. I am very thankful though, to have had an allergist's referral, for listening to me and then for the wonderful group of folks at Vanderbilt Voice Center. I have a new employer now where I have to wait awhile because of my pre-existing condition. I do have my good days and my bad. I don't do drive-throughs at fast food places or banks or talk on the phone (only to family and friends who know me). I do get scared to talk in public because I am tired of the looks I got in the past when I would speak. If I have to speak, I don't speak loudly. I have found that if I raise my voice, that's when my voice breaks. I drink lots of water to coat my throat so it doesn't dry out. I have found that soda tends to get the strangled sound started. (That's a good thing...I love my Coca-Cola, but I have cut that back to maybe 4 Cokes a week, if that). I am single so there are some things that I miss. Like having a companion who could be there for support, to be my voice coach, to help me to talk more and maybe break through this disorder. I do not go out, just "window shop" online, but when I write back to a possible companion, and I upfront about SD, well, I never get a reply back. I would love a relationship where my companion/friend would be my guide through my good days and bad, and to be there with his shoulder to cry on when I have had a really bad day with my voice....although, it would be a good thing, because I can whisper sweet nothings in his ear. What guy wouldn't enjoy that...ALL THE TIME! back to top >Jane Keller-Gordon I thought that I was nervous. I was 19, a pre-med student, and was terrified to speak in front of a group. I never felt that way before. I forced myself. Every class I put three check marks at the top of my notebook. One-by- one, I crossed them off, but every word was a struggle. I earned an MPH in epidemiology instead of going to medical school. That was great – I loved my field. For 12 years I worked for a major corporation. I hummed to myself before I answered the phone. I avoided speaking in front of large groups. I did well, but would have done better if I had a voice. During those 12 years, I earned an MBA in marketing in a part-time program. Somehow I managed to change jobs. Somehow I managed to navigate the world of agencies, television commercial production, and trade shows. Did anyone notice my voice? I still didn’t know what was wrong. I met my husband when I was 34. At first, he thought that I really liked wine. Now he knows that I was relaxing my voice. When I was seven months pregnant with our second child, I learned the truth. I was being checked out for severe hives at Mass General in Boston. An observant post-doc noticed my voice. She asked me to meet two researchers who were studying a rare vocal disorder. They examined me. They knew right away. “You have spasmodic dysphonia,” they said, “It is not your nerves. We can treat you with Botox injections.” They changed my life. My son was born six weeks too soon. I could barely speak. Having a Botox shot meant that I had to stop nursing. It was hard decision, but I chose the shot. It was miracle. It’s now 13 years later. I’ve accomplished a lot, but can’t help thinking that I might have reached higher goals with a better voice. It’s hard to be a leader without a voice. I’ve been lucky that I’ve been able to speak through my keyboard. I’ve had only 15 Botox shots in these 13 years. There have been years when I’ve had no shots, and years when I’ve had them every three months. There have been long periods when I’ve struggled with my voice. People asked me if I was sick. I couldn’t order coffee through a drive-in. I’d ask my children and husband to speak for me. I want to stay on track with shots, but it’s hard. Once I pulled the doctor’s arm as he was injecting me. Now I take valium before the shot, and the whole process is better, but the weeks of post-shot whispering are brutal. I feel like Eve, with two faces. There’s the version who struggles to speak, and the version who would call anyone of the phone, anytime. Why don’t I chose that better version all the time – I’m not sure. Having spasmodic dysphonia is really hard. So here’s the best part. My beautiful red-haired sixteen-year-old daughter is an unbelievable singer. She’s a soprano, with a four-and-a-half octave range. She has a huge voice. So I get to live through her a little bit. When I see her sing in a show, or with an a cappella group, for a moment, I think it’s me. I think, if I didn’t have this disorder, maybe I’d sound like her. But then I remember - I don’t. back to top Kay L. When someone asked me, "how has having SD affected your life for the better", it caused me to do some great soul searching, to weed through any negative thoughts and instead, pull up the experiences that have enriched my life since being diagnosed with SD in 2001. Actually, the funny thing is that in a way, I asked for it (SD). I had spent precious time gossiping with friends about friends. Then one day, my words, hurt someone that I loved very much. I prayed for God to teach me to keep my mouth shut. To think before I speak. A week later, I lost my voice after getting bronchitis. It was never "normal" again. I got what I asked for. Silence. From that, so much goodness has poured out of me and I am a better person. Now, I choose my words and conversations more carefully, more thoughtfully. I have learned patience when I thought that I had none. Through this gift of patience, I have become a better wife, mother, sister, friend. I now make time to volunteer and take time to help others with disabilities. Through doing this, I feel like, I myself am reaping great rewards. It warms my heart to help others. Strangers often ask me if I have a cold (because of my voice), I used to say "Yes...something like that" because I didn't want to put them in an awkward positon by explaining that I have a chronic condition. I didn't want them to be embarrassed. Because of SD, I have learned to be more thoughtful of other people’s emotions. I am not as easily knocked down by negative people or negative comments. I am stronger. My life has been enriched by taking every chance that I can to spread my knowledge of SD to other people, doctors and friends. Speaking of friends...if friends are treasures, my treasure chest is overflowing with new friends. The fellow SD friends that I have made while waiting at doctors offices, attending support groups and at the NSDA Symposium are the greatest gift of all. I finally feel like I fit in. It is a great feeling. These people have so much strength. I wondered, do they even know that they have SD? Of course they did, but they still burned trails, worked jobs, held their heads up, and carried on. I was finally done feeling sorry for myself. Wow, what a happy feeling that was. Going to the annual symposium was like coming home at Christmas.. The room is full of men and women who are filled with hope and joy. I used to think that when my husband joked with his friends about having the only wife who doesn't yell at him (because I physically can't) that he felt like a lucky man. Now I realize that maybe it is me who is lucky. Through having SD, I have learned wonderful traits and made great friends, I have learned to truly listen to others, and to choose all of my words like they were the last. Because, they might be. But now they will definitely be meaningful and kind. back to top Denise Leto Fifteen years ago, I was diagnosed with spasmodic dysphonia. Since then, I have discovered more poignantly than ever the joys of shared experience, deeper levels of awareness and compassion, and the need for a time-tested, creative and thoroughly resilient approach to my professional and personal life while negotiating daily experiences with a voice disorder. Without my realizing it at first, I fell into a kind of retreat and withdrawal from the professional and social realm. It was as though I drew the curtains down in the house of my voice in order to grapple with the “betrayal” of that particular shelter, to redefine and reshape it, and to understand it from the inside before I could fully venture out and embrace the external world again. It is through this experience that I gained an insight previously unavailable to me; that the form of voice, both spoken and written is ultimately and profoundly commanded by the inside no matter what it sounds like on the outside. What I see and think, how I interact is everyday altered. I have a different idea of verbal exchange, its limitations and possibilities are more apparent. For example, when I call, say, the utility company to inquire about a bill, the permutations of the conversation can range from tedious, to uncomfortable, to hilarious, to empowering. It may take 15 minutes just to convey accurately my name and date of birth. I may have a kind person on the phone or someone impatient. I can feel awful that it was a difficult conversation, or I can explore what worked and what didn’t and how in future situations I might position myself and my voice in such a way that the onus of frustration is transitory and thus does not reinforce a negative self-image. I am not my voice and neither am I my voice’s limitations. Nevertheless, it is through speech that we often make our first impressions and dysphonia has a way of wreaking havoc on those impressions. Yet SD is sometimes wiser than I am in its detachment from normative judgments. We all know that first impressions are often false, but in our vulnerability, they take on great meaning. But SD does not create the pejorative reception of halting speech. SD assigns no value. It just is—and though it can be the harbinger of emotional pain or the reason for disruption, it is itself neither friend nor enemy. It is a neurological blip on our spoken reality. The gift of communication when I talk with you and you talk with me is still intact. SD has made that more real; it has given it a heightened importance, not less. The person at the utility company had no idea of this most tender and private discovery of mine. To them, it was just another phone call. And that is exactly how it ought to be at its best: simultaneously just another phone call and a potential epiphany in the constant give and take of SD. SD’s unpredictable results give speech a second dimension, that is, silence. It is often assumed that silence is erasure, that the characteristic architecture of experience is verbal. But this is an unfortunate assumption; it presupposes that to participate in the world, one has to occupy consistently the role of fluid speaker. Yet conversation is an equal interchange—both the listener and the speaker must open to more nuanced levels of communication. I have learned to work with that feeling of erasure when I speak and am not heard. I have a new, albeit sometimes fraught relationship with that which is most important: acceptance. Before SD, I was a teacher and a poet who gave frequent public readings. I no longer teach but I am a Senior Editor at the University of California, Berkeley, I run my own free-lance editing business, and was recently an artist-in-residence. I give public readings rarely and shy from certain events. Yet when I contemplate where I was and where I am today I see a trajectory that though transformed is viable and whole. It is my unique trajectory. It may not look like how I thought it would, but it is richer than I sometimes realize. Language production is not something that just happens; it is something we can shape, even if the neurology behind its changing form is a constant. If speech and language are at the origin of our social world then imagination is its beacon. Our voices, in their great, unbounded expanse and wonderful variance, are its true shelter. back to top Sherry Lewis My name is Sherry Lewis. I'm 49 years old and I live in Waynesville, NC. My voice started breaking about three years ago and by the first of 2007 I could hardly speak at all. I was a Vice President and top mortgage loan consultant in the Western Region for Wachovia Bank and I had a second career as a bluegrass singer. I was with Wachovia for 29 years and had to take disability in July of 2007 due to Spasmodic Dysphonia. I could write a whole story on my ordeal about just trying to get diagnosed, not to mention the horrible reality of loosing my job and never being able to sing in public again. I am now taking botulinum injections at Vanderbilt University Medical Center in Nashville TN, but my talking and singing voice has never been the same. The positive thing I have taken from this experience is that you can get so tied up in work that you forget to love and live. I dated my husband for ten years before I finally agreed to marry him on July 7, 2007. He is the love of my life and he goes to all my botulinum toxin injections with me since I really hate needles. I am now a housewife to the Assistant Fire Chief of Waynesville NC and I've never been happier. My aunt is 83 years old and also has Spasmodic Dysphonia. I talked her into having Botox and she just had her first injection. We are waiting on results. back to top Gearlene Lilly My voice started fading in the year of ’84. I was constantly asked if I had a cold or laryngitis. I was a little hoarse and didn’t think much about it at the time. When I went to the doctor for a physical, somehow my strangled choked voice came up. He sent me to an ENT to make sure I didn’t have a growth. Later I went to a second ENT only to get the same results. I was pleased there was no growth but my hoarseness continued. A couple years passed and during that time I kept going through questions and diagnosis by family and friends. My aunt was concerned that I may have a tumor like a relative I’d lost whose voice sounded like mine. My boss was telling me I was yelling too much over the loud factory noise and was straining my voice. Friends were telling me to drink warm liquids. My husband was upset with all the doctor visits and no results. A couple more years passed and I decided to try yet another ENT specialist. All three specialists had recommended speech therapy. At one time I had such a nice voice I was even asked to join the choir. Since I never had difficulty “speaking,” I didn’t accept their advice. Now though, I felt no one wanted to hold conversations because my voice was so unpleasant. I wanted to avoid groups and being in a position in public where I’d have to speak. I was convinced God was punishing me for not using my voice when I had the chance. Being the church clerk, I found it most difficult to read the church minutes. I recall one time I read so poorly the pastor had to complete my reports and explain I was having trouble with my voice which was so embarrassing. He just didn’t know what to say. I felt I’d hit the bottom and things couldn’t get any worse. I even talked to the pastor about giving the position up. It also affected me at work giving me difficulty with leadership. Somehow God gave me the strength and courage to hold on. This was a small part I could give God since I wasn’t gifted with many talents. A deacon explained to me God was not a punishing God. After living with this for almost eight years and believing I’d be like this the rest of my life, God started working in my life. While driving to church one morning, little did I know for me this was the beginning of a miracle. The theme for this “friendship” Sunday was come dressed as you do for work. We all wore name tags stating our occupations. I always sit in back of the church but this Sunday God placed me up toward the front. During the fellowship hymn, I turned around to shake hands with a guest of a dear lady. Her name tag read “Voice Therapist”. I made a comment to her that she was who I needed to see. After the services while talking she said “you really do have a voice problem.” She sat up an appointment with a speech pathologist. I had tests on machines and voice analysis. The pathologist explained my condition, which was spastic dysphonia. Another appointment was scheduled at the Cleveland Clinic for a second opinion. Basically, the same tests were performed. I was told that surgery was performed on severe cases but mine wasn’t severe enough for surgery. Not too mention that the drug Botox (though now popular in cosmetic circles) was expensive and rarely on the medical scene at the time. I thought the door was closed again. A friend later gave me a copy of Prevention Magazine. In it was an article on Spastic dysphonia, which the pathologist earlier had explained. I was referenced to write to Michigan, California, and New York for more literature. Rick Johnston from Michigan wrote me and personally invited me to their support groups. My husband and I got dressed and ready to leave one morning when I realized I had no idea where we were going. I called to get directions. It would be quite a drive for a meeting on hypnosis, so we decided to wait till the next meeting. I believe this was God’s doing since the following month ended up having the highest attendance and most doctors ever present for a meeting. The media attended and later I was even included in an article! The doctors were also returning from California with the latest research from the first National Spasmodic Dysphonia meeting! For the first time, I was also hearing people speak like me. I learned a lot from this and similar meetings. “My heart was pounding as I was minutes away from getting my first injection of poison. Yes, a toxin called Botox that’s injected into your vocal cords and helped so many regain their voice allowing them to speak almost normal again.” There were only 11 centers across the U.S. giving these injections. I felt confident that the center in Michigan was the most knowledgeable. This helped me relax as I received my first injection. I have 2-4 weeks of breathy voice from injections and they last 4-6 months for me. In God’s timing, he opened many doors and after eight years of searching he lead me not only to help but my own voice miracle. back to top Maria Marmaro The journey of Spasmodic Dysphonia has affected my life in so many ways. I never thought that it might be a blessing or that meaning may come of it. I work as a teacher with the autistic population. A large majority of the students in my building do not talk. They use picture symbols to communicate. The children I work with are very sensory and do not like loud noises. They cannot process when someone is speaking to them to much. They get very upset when they are frustrated because they can't express their feelings. I feel a sense of empathy for my students like no one else because I understand their frustrations in not being able to communicate. When I talk in a low voice, they are soothed. When I talk less, they are able to understand my words. How ironic that I ended up working with students who can not talk. I do understand their frustrations to communicate freely. I appreciate their acceptance of my voice after I had my Botox injection in my vocal chords and my voice is hardly above a whisper. I feel for the fact that when someone talks to them too much and they can not answer and it is frustrating for them. Spasmodic Dysphonia has made me an empathetic teacher who has made a difference with the autistic children I work with. And that is a blessing. back to top Sabrina Marshall Living in the Shadow of My Voice Maya Angelou once said, “People let you know who they are, and when they do you better believe them.” At the time that Spasmodic Dysphonia impacted my life, I was going through a divorce, raising my children, and trying to finish school. If I had to paint a portrait of this disorder using words, the words would be choking, cracking, breaking and falling apart. I told myself who I was, and I had to believe in me. Unfortunately, going through a divorce can be a difficult experience; it was a daunting task for me. To illustrate, I was married for fifteen years; my ex-husband called me on the phone and said that he was ending the marriage. Uneducated and unskilled, I had to pick up the broken pieces of my life; meanwhile, my hoarse and crack voice embraced me. I ignored the sound because surviving became my first priority. I knew that I had to provide for four children and keep a roof over our heads. My adversities made me stronger. In addition to facing the stigma of a divorce, I had to play the role of mother and father to my children. I had to be that strong voice to steer my three sons and daughter in the right direction. Although I had a weak voice, I had to pick up the phone and make important calls. I had to attend teacher conferences; on the other hand, my ex-husband told the children that I had throat cancer and I did not have long to live. The children were devastated. My mother intervened, and I saw a doctor. Finally, I was diagnosed with Spasmodic Dysphonia. This experience gave me more strength. Equally important, I dropped out of school in the tenth grade. I decided to go back to school before my marriage ended. I earned my GED; then I started attending college with SD. I had promised myself that I would not dropout of college like I did in high school. There were many challenging moments. For example, I took part in a play, and one of my peer stated that she did not liked the sound of my voice; besides I had many oral presentations to do. I persevered. One of my proudest moments took place when I walked across the stage to received my Bachelor’s Degree in Special Education. To sum up, living with Spasmodic Dysphonia is not easy. I have faced many challenges, adversities, and barriers. Although my voice still crack, break, and crumble up, I have not allowed my life to be scatted into pieces, I know who I am; I believe in me; I know where I want to go. Most of all, I know that my SD voice would always be with me like my shadow. back to top Rebecca Mason Having a medical condition and not knowing specifically what it is can be extremely frustrating. Although I visited a general practitioner, a therapist, and a hypnotist, neither one could tell me what was wrong with my voice. Finally, someone ventured a diagnosis when my speech pathologist said: “You have Spasmodic Dysphonia.” My reaction may have appeared normal even though I had no idea what she meant. Yet I finally had an answer to the “strained voice” mystery and could begin to deal with my condition. This continuing journey has lasted several years and, although bumpy at times, I can truly say it has been the greatest growth experience of my life. One might ask how acquiring SD can be possibly a good experience. The only way I can explain it is through the scripture “...power is made perfect in weakness.” Through battling SD, I have truly become a stronger and better person. I imagine that SD changes people because they become self-conscious about their voice. In my case, even before acquiring the condition, I was reticent. My thought thus became “Great, I was a reserved speaker before SD happened; now what do I do?” What I did was learn. The first lesson was that we are not our condition. Prior to getting SD, I tended to judge people based on their physical condition or characteristics. I would see someone without eyesight and think of him or her as a blind person. Now, I am much more open-minded and will perceive that same person as simply someone with many abilities who cannot see, or, in other words, other-abled. The distinction may seem minor to some people, but I think the way we perceive and label others is extremely important to their dignity and our moral development as a society. I try to share this message with as many people as I can. Fortunately, as an elementary school teacher, I can relate my message to students when the opportunity arises. One way is introduce students to famous people who had overcome physical limitations to achieve greatness. Some of the examples I have used are Helen Keller and Jim Abbott, a former baseball superstar pitcher who had one hand. The second lesson learned is that challenges make us stronger and willing to take more chances to overcome. Not long after getting SD, I was invited to a Toastmasters meeting. Even speakers with normal voices are terrified of getting up in front of an audience so you can imagine how I felt. Despite the fear, I knew that if I could overcome this particular challenge, then talking to people would be much easier. After a few meetings, I garnered the courage to deliver an icebreaker and tell my story. After I spoke, one of the members told me that he admired what I had done and even called me his hero. Buoyed by the audience reception, I went on to deliver nine more speeches to earn the Competent Communicator Award. In fact, I won the Best Speaker Ribbon nine of the ten times. In addition, I learned a valuable lesson: your voice is only part of the communication process. Presently at school, I am often asked to present information to the administration and my peers. My quivering voice is no longer a consideration as I realize that the less attention I pay to it, the less concerned I am about what others may think about my voice, resulting in a greater focus on the message. Another lesson was that sharing my story with others was beneficial. For example, in my profession as an art teacher, I always share my story with the students. Surprisingly, children are much more accepting of differences than adults. I believe that when students internalize at a young age the lesson that people are all different and that diversity is strength, then they become better human beings and citizens, creating a better society. Their reactions have also inspired me. One example is the fourth grader who said that his career goal was to become the physician who finds a cure for SD even though he presently is unable to pronounce Spasmodic Dysphonia. Living with SD can be challenging. There’s always the concern in the back of your mind that your condition is getting worse, that you may lose your voice completely, and that others are judging you. I have learned, however, that if you focus on having a positive attitude about your condition, there will be untold benefits that may seem hidden at first but become manifest during the process. back to top DaNita Brady McClain I May Have SD (Spasmodic Dysphonia) But it Does Not Have Me! Noted life coach and author, Iyanla Vanzant stated, “A set back prepares you for a comeback.” This phrase best describes the plight of my experience with Spasmodic Dysphonia. At the age of nine, I could stand before my classmates and deliver a presentation that magically and hypnotically drew them into my world. Perched on the edge of their seats and hanging on my every word, they anxiously anticipated my next statement. I was in “the zone” and loving it. I never imagined that I would take ill with flu-like symptoms and submerge speechless. I wasn’t really speechless because I did have a voice, but as my sixth grade teacher described so crudely --it shook like Jell-O. Who knew my life would take this turn and that I would wrap myself into a self spun cocoon of silence? Apparently no one; not even the doctors that would offer erroneous diagnoses over the next three decades. But fret not on my behalf, at the age of 40, I finally got a correct diagnosis and treatment that propelled me from setback to comeback. From a cocoon of silence emerged a butterfly that eloquently flutters through presentations and speeches with no indication of vocal dysfunction. Once I received an accurate diagnosis and treatment, I relished in new found confidence and set loftier goals, like pursuing a bachelor’s degree at Spelman College. In 2003, (at the tender age of 47) I received a degree in Human Services and graduated with Latin honors--magna cum laude. Four years later, I landed a job in (guess where) the Office of Public Relations/Communications—how ironic is that to evolve from a non-communicator to a Communications Assistant? In August 2007, I joined Top of the Hill Toastmasters and I stumbled upon a passion for delivering informative and colorful speeches. Upon delivering the Icebreaker--my first speech, I had a flashback from “the zone” experience that I basked in during my elementary school days. Before me sat an audience in total awe with what appeared to be looks of interest on their faces; smiling and even laughing when I delivered unpredictable punch lines. I had managed to harness their attention and hold it for the entire time frame to qualify (five minutes). As the timer turned flipped the switch and the green light came on to alert me of the five minute qualification, I began wrapping up my speech just like I started it--with a powerful yet amusing statement. Once I was seated, I felt a sense of relief that took a back seat to my feelings of emancipation and empowerment. Although I realized I had the audience’s undivided attention, I wasn’t sure how the evaluation process would go. Much to my surprise and pleasure, I received rave reviews. The voice that I thought was hoarse and weak—was perceived by the audience as soothing and inviting. I was even advised by the evaluator to seek employment as a radio quiet storm hostess. In the end, the accolades continued as votes were taken to elect the best speaker of the day. My competitor, a second level advanced Toastmaster, was excellent, so I really did not expect to defeat her. Once the votes were tallied, the announcement was made and who do you think won? The SD defeater won by a landslide. After many years of self induced silence, embarrassment and creative attempts to avoid conversation, I have emerged from a disability to ‘speak ability.’ The words that were stifled over the years have marinated at the base of my throat and are now flavorfully flowing forth to empower me and anyone else who cares to listen. I no longer perceive SD as a hurdle but I embrace it as an experience that propels me toward my purpose and opportunities that never cease to amaze me. So look out Toastmasters, the caterpillar has evolved and a butterfly has emerged with words eloquently fluttering from her wings. I have much to say and through my speech I eloquently parlay, So lend me your ears as I conquer my fears. And if you observe closely the perfect me you can’t help but see, I may have SD but it does not have me. back to top Priscilla Merrill Choked Up in the True Sense” If I had one wish along this amazing journey of living with spasmodic Dysphonia, it would be to shed some light about living with this strange disorder with the general public. I also love to help comfort others as they grapple with their diagnosis and whether or not to endure the “knife in the throat” to have a better voice. The “SD Diagnosis” is much like menopause. It’s a retrospective diagnosis and hard for most of us to pinpoint the time it started. It’s similar in its nonlinear roller coaster ride of a range of emotions and feelings. Anger, frustration, tears. Repetitive Nightmare Dreams where you are in danger and can’t scream. I wish I had kept a journal! What I recall is a gradual gravelliness to my voice. I sang in the church choir for 30 years and suddenly, my perfect pitch was gone. I could think the notes (still do!) but could no longer hit them. The cracking, spasm seeped into my normal voice. After a long drawn out workup for reflux, ENT, Primary care shaking their heads, I read Diane Rehm’s book, FINDING MY VOICE. There was my AHA moment. I researched, took the train from New Hampshire to Mass General and had my hunch validated with the fiberoptic crystal ball down my gullet. I found that hard to swallow! Joni Mitchell’s song haunts me: “Don’t it always seem to go that you don’t know what you’ve got till it’s gone. They paved paradise, put in a parking lot.” Can’t sing the song any longer but I can hum it and whistle it in my head. When I hear young people abusing their voice, screaming loudly, I think, don’t take it for granted. It’s like hearing a ghost, listening to old home movies. I’m essentially the same person but my voice markedly different as if it belonged to someone else. In silent songs, our souls sing through our hearts. Silence is Golden but we can feel all but Rich. I’m a Family Nurse Practitioner so I use my voice constantly. My patients tell me I’m a rare gem in our bustling chaotic healthcare system because I honestly listen to them and let them do much of the talking. Perhaps in my own illness, I’m a better healer to self and others. I am blessed to have a sense of humor. This has made the path much easier. I have long thought of T-shirts as fundraisers for SD to my retorts in my head when well-meaning folks say the wrong things. I’m now numb to the barrage of comments. The anger has turned to laughter and I’ve learned to laugh at myself lovingly. I’m a tougher bird thanks to SD. I seem to have sprouted a gentler heart at my center. I think before I speak and make sure my words are well-worth the effort it takes to splurt them out on the tough days. Thanks to Botox, many are unaware most of the time that I indeed am the proud owner of a rare voice disorder. I’m sure others can relate to these comments and could add more lines to our T-shirts: “No, it doesn’t hurt.” “Nope, no cure, but thank God for Botox!” “Yes, it’s very tiring.” “No, I’m not trying to imitate Woody Woodpecker or the RoadRunner.” “No it’s not heartburn, but Yes, it can make your heart burn in other ways.” “No, I don’t have a cold.” “No, I didn’t get it from yelling at my kids.” “No, my family doesn’t love it that I can’t talk or yell.” “No, I’m not nervous…or about to cry…or a smoker…or a boozer…or having a sex change operation.” “It hurts when you hang up on me when I can’t speak loudly enough for you to hear me. Listen Up!” “No, my favorite perfume isn’t SPEAKEASY” “No, I don’t get Botox anywhere else and yes, sometimes I wish my doc had Parkinson’s so he’d wiggle his hands and touch up my wrinkles at the same time!” So now, almost 10 years into the journey, I can “say” SD has transformed me in ways that I could never see coming. It’s not all valley, there are indeed some peaks despite the hardships. May you love yourself in the journey and be joyous in the discoveries SD will reveal. Shirts Happen but life goes on. Walk the Talk and get involved to find a cure! back to top Beverly A. Meyer The Paths I’ve Traveled to Find My Voice The day is remembered so well. As a College Admission Counselor, a long day and night was spent with high school visits and a college fair. That night, having flu-like symptoms, I noticed a change in my voice. Probably laryngitis, I surmised, but it did not go away. I visited an ENT specialist and after complete examination and test, he said he felt it was spasmodic dysphonia. In disbelief, I sought other opinions…..especially since I seemed able to continue in my position. When the spasms occurred I used the excuse I had a touch of laryngitis. Being a humorous person, I laughed a lot and found that aided my speaking voice. My husband, being very supportive, traveled with me to California in search of a cure. I learned to speak on a higher pitch. However, it just wasn't a normal sound and there was no speech therapy help in maintaining that pitch when I returned home. Turning to Botox was a God-send, especially since it remained effective up to six months. It seems like I have been on Botox for approximately eight to ten years, but time flies so, it could have been longer, or shorter. I maintained my position as Senior College Admission Counselor, obtained my Masters in Religious Studies with a concentration in Pastoral Ministry, presented a Marriage Workshop Program at our parish, and upon retirement, was elected to the Education Commission at Church, ultimately becoming the Chairperson. Recently I received the Catholic Kolping Service Award, all of which, emphasizes that you need not be “silent” just because your voice decides to change. Recently I came across an article regarding acupuncture. Why not try it? Botox seemed to be losing its effectiveness. Four months seemed to be my limit of relatively good speech. A group had gone through an acupuncture trial with fairly good success in 2001. Looking back, they did not accepted patients on Botox, so that had eliminated me at the time. The doctors who headed the program had moved to Florida. One of the doctors I contacted was very supportive. She encouraged me to seek speech therapy in conjunction with the acupuncture. I looked for a physician/acupuncturist who was familiar with adductor spasmodic dysphonia who studied at UCLA. I prayed and believing in prayer, the presenter at a financial seminar which my husband and I attended asked if I had spasmodic dysphonia. He told me about his wife who practiced in that field. She was a family physician for ten years prior to going into acupuncture and studied at UCLA. Another God-send! At present I am using acupuncture and it is helping. I am cautiously optimistic. Also, I have just begun speech therapy. The question was asked, "Would you go back to Botox?" My answer, “I am always open to new avenues, which does not mean I would not retrace my steps. I would travel whatever road that leads me to either improvement or cure for my voice!” back to top Lynn Miller When I was 13-years-old, my voice faltered for the first time during an oral report in school. People sometimes are nervous about public speaking, but that wasn't the case for me that day. I had been the lead character in school plays and loved to read in front of the class: NO FAIR. I was confused about why my voice was breaking off and trembling that day. After school I remember mentioning it to my mother, who said, “You were probably a little nervous” and shrugged it off. My voice was still normal around my family and friends. From that point, my voice began acting strange once in awhile. By the time the next school year began, the undiagnosed SD voice problems were in full bloom. I was terrified to speak aloud in the 8th grade classroom. Rude boys made fun of my voice and imitated me aloud to mock me whenever they saw me. A couple of them rode the school bus with me and told the others on the bus how I sounded in the classroom! That day was probably the cruelest moment of my life's experience. I spent the remainder of my school years avoiding public speaking and even changed my major to Art because I would not have to talk in those classes! College? No way! I was glad to be finished with the classroom experiences. I ended up becoming a Mail Carrier who works outdoors; away from people and telephones! My embarrassment about my voice caused me to withdraw into a "Don't ask/ don't tell" shell of avoidance about voice issues. I never asked doctors about the voice because I did not want to talk about it ! In 1991 the Sunday newspaper focused on health problems. I happened to spot a tiny article about Spasmodic Dysphonia that described the symptoms and told of the Botox injections at nearby Mayo Clinic Scottsdale. The very next day I had my husband make several phone calls to the numbers listed. I had a fear of using the telephone. The happy ending is that I was diagnosed with Spasmodic Dysphonia and I finally knew what was wrong with my voice. Hooray! The Botox injections help smooth out the breaking off voice, but do not help very much with the tremor I also have. Some days I almost sound normal and that is a huge blessing from God in answer to years of prayers! back to top Lisa S. Milligan Having SD has impacted my life for the better, and I am writing to encourage others with SD to help see this problem as an opportunity and not a set back. When I first was diagnosed with SD I was so relieved and happy I almost cried with joy. For several years, no doctor could tell me what was wrong with my voice. I was told I was stressed out; I was given tests, I took medication, but NOTHING worked. When the speech therapist I was seeing showed me a video about SD I was stunned. Others? Like me? The biggest impact losing my voice had on me was the way other people treated me. I am so used to being told “to go home and have a cup of lemon tea and honey” at the bank, or “you poor thing you sound terrible” at the drive through, or “Are you ok” on the telephone from those who do not know me. I used to get angry and frustrated; but now I realize how many caring people there are in the world. The first time I had a Botox injection, I left the next day for a scheduled family reunion in New York City. I had no idea after that shot I would not be able to talk at all. Luckily for me, I suppose, my three children found great humor in this situation and were happy to talk for me; especially when it came to ordering dinner! The worst situations turned into blessings. I was asked to audition for the graduate degree speaker at my school’s commencement ceremony when I earned my masters degree. I auditioned and the judges loved my speech about “overcoming obstacles”. They told me I was a finalist and I had to audition one more time. When I came back, there was another speaker there, a man, who had not been to the prior audition. They picked him, as they told me, because “His voice projection was so much better’. I was devastated, because I thought the speaker was picked based on his or her meritorious grades. Apparently not. But, out of this experience, I found the SD website and the caring people on the discussion board. If I had not gone through this rejection; I would never have met these wonderful people. Another lesson I have learned is; having SD has made me a better person. I can relate to people with different disabilities and see their perspectives. As a teacher, my students can all hear me, even though I speak softly. I have taught them that louder does not mean smarter. And, actually, they listen more carefully to me. Sometimes a student with a speech impediment will open up to me after I say to them; “You know, sometimes I have a hard time talking too.” This breaks the ice and they open right up to me. It was Coach Lombardi who once said: “Everybody can like somebody’s strengths and somebody’s good looks. But can you like somebody’s weaknesses? Can you accept them for their inabilities? That’s what we have to do. That’s what love is. It’s not just the good things.” This has become my creed. I know the people in my life can accept me and my broken voice and I live more boldly. Sometimes my own children tease me and say they think its something I can control; because I can sing and laugh. But I’ve taught them through my life’s experience’s how everyone has a weakness. It takes courage to overcome a disability, especially a weird one that barely anyone knows about. So, through my experiences, I have learned how to love and accept people's inabilities. As a special education teacher, I model acceptance and feel more compassionate for the difficulties others face. Every day I step into my classroom, there are 75 students I can, if nothing else, teach them this lesson. So, what a gift I have been given. I have the opportunity to lead and model, and I do not honestly think this would have been the case had I not lost my voice. back to top Catherine Morrow Having SD has had a huge impact on my life and it is not all bad. My career as an optometrist has been adjusted to work around this inconvenience. My voice started to give me problems in February of 1999. I spent the next 18 months trying to find an answer to why I was having so much trouble talking. The first ENT told me there was nothing wrong and the next one diagnosed me with acid reflux. I also made the rounds to an allergist, my family physician and then finally to another ENT who knew right away that I had SD. Just knowing that there was name to my problem virtually brought me to tears. Then hearing that there was treatment was even more exciting. I spent several years getting Botox injections and I was very successful. I even worked with several speech pathologists who were of minimal help. Several things have it possible for me to gain the control back. First, I went in to practice with my husband who is also an optometrist. In March of 2007 I quit seeing patients and took on managing the office. I found that knowing what I was going to say would really make my voice catch. With spontaneous thought, the words come out much smoother. The other thing that botox helped me with was the breath control. Relaxing the diaphragm and not forcing my voice makes it easier for people to understand me. I have been Botox-free for 2.5 years. There are still times when I get spasms, but I can get it under control. I have also learned that words that start with vowels are more difficult and I will find a way to get around those words. Keeping my voice soft and breathy has lots of advantages. People think my voice is sexy and people really have to pay attention to me when I talk. I don't see this as a disability but as an inconvenience. Would I like to have my normal pre-SD voice back? You bet I would. But if my story can help someone else then it has been worth the effort. back to top Sandra Nelson< When I first was diagnosed with SD, I thought my life would end. I had been an investment banker in downtown Boston and communicating with others was part of my every day routine, unlike some people. I was mad at all the doctors for not diagnosing me sooner. I had been left to struggle on my own, embittered every day with uncertainty and having to bear the teasing of my coworkers: "She sounds like she's crying!" "What is freako trying to say this time?" Needless to say, when I came in to tell them I had a neurological disorder, they sure were eating their words! I screamed as loud as I could, "So I wasn't just crazy! I was diseased!" Well, from this day forward, I decided to take charge of my voice. No, I wouldn't allow people to make fun of me anymore. I told them, I will talk when I can talk, and when I can't, my computer will be my voice. And so, when I purchased my talking computer, she became my most trusted friend and saved my career. I still notice snickers from time to time from my coworkers when they hear "Sally" report my findings, but this computer has given me the voice that SD took away from me. My life will never be the same, and I would be lying if I told you I was happy I had SD. I am not. Why did this happen to me? What did I do wrong in a past life to curse me with this? But it is my lot in life, and if I don't want to come back as a cockroach next time around, I need to make it work for me. The support group I attended once was filled with sadness and negative energy. But the moment I pulled out "Sally" and she spoke to them with uplifting words of hope and computer verbiage, the light in the room changed. Everyone wanted their own "Sally." And while not everyone is a banker who can afford such high technology, that is something they aspire to have one day, and I encourage them to take up a second job in order to get it. "SD doesn't have to make you lazy!" I have "Sally" yell at them. And when she talks, they do listen. In fact, everyone does. When you walk around in the city or look at the stranger sitting across from you on the train you might think, “gosh, they have it so easy, no weird disease, no SD, no worries.” Life is just not fair. But maybe it is. Maybe getting SD or another weird disease helps us see what is important in life and leads us to look for creative solutions to overcome obstacles. It makes us find our Sally. And makes us realize that the small obstacles in life are not worth worrying about. Where my co-worker may worry about her dress being wrinkly in front of the partners or her broken high heel that fell down the drain on a street corner, I just smile. This is my lesson. This is what I have learned. This is how SD has changed my life for the better. It has given me confidence and it has put life in perspective. It has given me a voice. A computer voice, "Sally," and that is a voice people listen to like no other. back to top Sherry Overholt After several years of endless doctors and diagnosis, I was told I had spasmodic dysphonia. What a relief to be able to put a name to something that was making me feel so inadequate. Little did I know how this diagnosis would change my life forever. In 1992 and with a great deal of hope, I endured laryngeal framework surgery that ultimately failed. That is when I began my journey with Botox. What a feeling to be “normal” again! Of course that feeling was not permanent and gradually my voice would begin to break. People would endlessly ask what was wrong with me and why I was sick so often. After explaining my disorder, they would give me a sad face, dismiss me or just make rude, hurtful comments on how bad I sounded….as if I did not already know. The next time I would see them, they would ask the same question! The very thought of not listening to people resignated with me. I have learned how special it makes people feel when you really listen to them with your head and your heart. Almost everyone has some kind of “disorder” and we must learn to be more tolerant and forgiving. Learning to live with spasmodic dysphonia has opened my eyes to a world that is not perfect, but can be filled with kindness, acceptance and being genuinely concerned enough to listen. back to top Jerry Panik Voices for the Voiceless With that strange sounding voice, we look around to see whom else is in the room; turning around to see it yourself that is speaking to family members, co-works or new acquaintances. Suddenly you discover it is coming from your own mouth how shocking and embarrassing it was to have this happen to me on the verge of induction to the military in January 1971. The first time I noticed this voicelessness I tried to say the word "Hoyle" but nothing came out my good friend that was with me just sort of laughed as I did too. As luck would have it my draft lottery number, 18 was coming to the front of the induction line that vast "Military Complex" early that January with this new distressing revelation of stress (that would be my voice). In basic training my new found "voiceless" was a difficult situation with screaming of the drill instructors and the usual harassment involved in military basic training. I was thinking why I didn't go to Canada with the rest of the "cowards" of the Viet Nam era. That said, I was willing to serve my country regardless of the voice problems and the Air Force did not seem to mind either as they needed more bodies to fill their quotas. After serving in the "war to end all wars" in Alaska with the "fecal matter" being scared out of me in the "war" against the "Hawk" also known as the Alaskan winter my voice problem was never diagnosed until I was stationed in Japan with the ENT doctors and speech pathologists stating it was "stuttering." Wrong! Another diagnosis was a mental disorder wrong again, from Walter Reed Army Medical Center speech pathology and ENT. Good fortune struck however with the miraculously discovery if I got intoxicated my voice quality vastly improved as sergeant of mine astutely observed. True but it seems the military and civilian authorities don't care much for drunken sailor syndrome as a treatment for personal voice problems. Another fine speech therapist and ENT doctor in the military medical service decide to inject valium into my throat ending with no voice at all for two days; wrong again. Returning good fortune truly came to me in 1974 when I meet my wife and she did not even mention my voiceless attributes but she gave me comfort although she enabled my voice problems by speaking for me when I should have spoken up for myself. With age and the anger of being the brunt of mocking and jokes I learned to "speak up" as it were for myself to confront those folks. Truth be told I was bigger than most of the people that mocked me also may have been an advantage in my favor as I confronted those wretched scoundrels. As time flies by and the older we become It seemed I found the same diagnosis in the Veterans Medical Service trying to make sense of my voice condition; again speech therapists for the VA gave me stuttering exercises to practice and the result was still the same no improvement in the quality of voice production and the social impact on my family was getting more isolationist; we would general just visit family members. In 1996 after not seeking help from speech pathology I decided to go to our medical provider Kaiser Permanente in Fontana California. There the speech therapist made the diagnosis that I was looking for as "spasmodic dysphonia." Hallelujah and Amen at long last I had the answer to my voice disorder after decades; the fact of known brought great relief just knowing I was indeed not crazy or a nut case. Right away the pathologist got me into Botox injection treatment at their ENT clinic at the Hollywood Kaiser Facility. There at that hospital I started treatment for the newly discover diagnosis of "abductor spasmodic dysphonia." Although the treatment was difficult with scopes down my nose to the throat at long last we knew the source of my anxiety. Because treatment of Botox did not have much of an impact on the quality of my voice production and the fact that a syringe was broken off in my throat, resulting in emergency surgery, I had stopped treatment for the disorder but I at least knew the source and found comfort know medical research and treatment are continuing and maybe someday they will find a cure and we will find "voices for the voiceless." back to top Paula Pettersson nee Fletcher I first noticed my voice tremoring, as a teenager when reading out aloud in front of the class at secondary school, in England. I had butterflies in my tummy, felt very nervous and hated my voice when asked to read in front of people. My writing was also wavering when I was in a stressful situation. I had no idea then, these were the first signs of dystonia. The spasms in my larynx started when I was 19, when training in Allied health at a teaching hospital in London, UK. The day I started treating patients my voice went spasmodic. I had no knowledge of Dystonia, nor Spasmodic Dysphonia, so was very worried about my condition. I saw my GP who had no idea what was wrong. He sent me to specialists and I had a few tests. Over the next 4 years, I saw ENT specialist, neurologist (Sir Roger Bannister), psychiatrist, psychologist, speech pathologist, acupuncturist and a hypnotist who was a medical doctor. This was in the mid- seventies and no diagnosis was given except for nerves!! I finished my Diploma and worked in London for a year before setting off for Australia. I settled here, and later married, Alf and had three lovely children. I got on with life despite my weird voice, and just thought I had to put up with it. My husband was the first person to suggest I had SD, when watching a TV program called Good Medicine in 1997 by the presenter Simon Reeve. His father had SD, also a TV presenter, so he did a very informative show on this rare condition, not many people knew about. I was out and he said to my daughter, I think that's what Mum's voice problem maybe. Alf gave me the fact sheet on the Good medicine show and rang the Sydney support group president, Cynthia Turner, the next day. She told him to get me a referral to see Dr. Blackie, neurologist at John Hunter hospital, Newcastle, NSW, close to where I live. I finally got to see him and yes he thought it was SD.I had to see an ENT specialist and Speech Pathologist to have the final diagnosis, Spasmodic Dysphonia. Next visit was the Botox clinic under Dr. Blackie, accompanied by my husband. Yes, the Botox worked, I was husky for a few weeks then my voice was normal for 3 months, oh what Good Medicine .I have been having the Botox for 11 years, with good results. However, just recently my swallowing has been a problem. I am having tests at the moment. I was also getting bad writer's cramp towards the end of my working career when writing numerous reports, another form of focal dystonia. Just after I retired in 1999, I started to notice my neck starting to twitch .I saw Dr. Blackie for my laryngeal Botox, and he diagnosed Cervical Dystonia caused by a medication I had been taking. The diagnosis was much quicker than SD, only a month. Thank goodness, as The torticollis may have been far worse, as I have Botox for the neck also, which has been good So every two months I'm having Botox to one part of my body. Not for my wrinkles or my writer's cramp. I have changed hands for writing, as it was too hard with my dominant hand to write legibly. We have a small social SD group in Newcastle, NSW and meet up for a coffee and chat. We hear similar stories to mine and compare our results with Botox, although not everyone has it. Good Medicine saved me from a far more difficult and frustrating life. Good friendships have been formed with SD in common. I am not alone with this rare dystonia, as I once thought I was. back to top Gwen Pongracz My Abductor spasmodic dysphonia developed after I had surgery. It began gradually with a strange feeling in my throat which my family physician dismissed. As time went on, I began running out of breath when I would talk. I thought I had a problem with my lungs and went for many tests. Tests for tuberculosis, emphysema, asthma, lung cancer, etc. But nothing was found. As time progressed, not only was I running out of breath, but also my voice began to break. Off I went to an ENT who checked me for post-nasal drip, allergies and acid reflux with no conclusive evidence of any of these. With no answers for my condition I was told my problems were due to stress. And I can tell you by that point I WAS stressed. Because I had now had the problem for about five years – two of which I could barely speak – making getting a teaching job or almost any other job very difficult. Around this time, I was working in the camera and film department of our local Kmart. One day when I was alone in the department, the phone rang. Usually I didn’t answer the phone because no one could really understand me. But fate stepped in that day. As I answered the phone, the man on the other end said, “Do you mind if I ask you a personal question?” Having worked with the public for a long time, I was a little hesitant to say yes because you never know what kind of question you might get. But he asked me if I had a problem with my voice. And I was thinking, “Isn’t it obvious?” but I just said, “Yes.” He told me that I sounded just like his wife and that she had struggled with her voice problem for twenty years but had recently been diagnosed with spasmodic dysphonia. He said she was getting treatments and they were helping her. He gave me the name of a local doctor who was familiar with SD and also told me about Dr. Blitzer in NYC who gave his wife her Botox shots. He also gave me the phone number of the NSDA. I called the NSDA and got an answering machine. I really didn’t want to leave a message on an answering machine because I sounded so bad but then realized that everyone who called them probably sounded bad! So I left my message. When I received the literature from the NSDA and read all the symptoms, I was so relieved to find that I was not alone and I was not losing my mind! After getting my treatment and getting my voice somewhat back to normal, I decided that I wanted to speak to other SD patients. I started a support group in my area and we began promoting awareness so that other SD patients would not have to wait as long to be diagnosed. SD has brought me into contact with wonderful people and given me a larger purpose for my life. It has given me a new appreciation for people with disabilities. But it has also given me a sense of how blessed I am. SD is not going to take my life nor will I let it take over my life. back to top Sharon Sheppard I feel my story is no different, or at least near the same, as many of you. I was 34 when I started with, what I thought was prolonged laryngitis. I went to a ENT doctor and was told it was the way I was speaking,, he first sent me to a speech therapist , after working with me six months said she was sorry, but she couldn’t help me. I went to another ENT doctor, this time I was told it was nerves. He prescribed Valium!! To think about that today, 22 years later I still get furious. I went on the drug for a short time, and let me tell you, this is one reason SD needs to be better known. I had adverse affects from the drug which contributed to my divorce. I was becoming more and more withdrawn, my self esteem was totally shot and I was having a hard time functioning in my job, which was sales of all things. I moved to a different city, due to my divorce, and was now in a travelling sales job. At first, I could get by as long as I was in front of the customer. I had moved away from all of my family and was finding it increasingly difficult to keep in touch with them by phone. I went to another ENT doctor who wanted me to try the valium treatment again. I am to this day appalled by so many Doctors who are so quick to prescribe this for lack of any better ideas. I refused and he suggested a psychiatrist. Needless to say, I was at my wits end at this point. I had to get one of my coworkers now to make my appointments on the phone for me. My Mom would call and say, “I know you can’t talk so just listen and make a noise”, I still get tears when I think of this. I started trying to think what kind of job I could do with no voice, sweep street’s for the city?? Of course that would mean an interview. I really don’t believe I would be a sane person today if it had not been for a phone call from my Mom about six months after my move. She told me she was watching one of those “Health watch” segments’ on a morning show and quote “They’re other people like you!! (She was so excited), it’s call Spasmodic Dysphonia.” I had my coworker make me an appointment with the last ENT doctor I had seen. I told him about this condition, he said, “Well, I have heard a little about it, you would need to be tested, I said WHERE!!! Send me. It still amazes me I had to be the one to suggest this to the doctor (and you can bet he charged me for the appointment). I went to Bowman Gray in Winston Salem, NC, was tested and was confirmed to have SD…..funny thing to be excited when your told you have a condition, but I was ecstatic, I now knew I wasn’t crazy! My first Botox injection was 2 weeks later…18 years later, I still have the injections about 4 times a year. I opened my own sales company and been in business 18 years! My life has been wonderful since my four year ordeal, many years ago. I have recognized Five SD persons in my travels and have helped them in finding treatment. I do believe SD is more recognized that it was 24 years ago, a lot having to do with the internet, but it still saddens me to know there are a lot of people with this condition that haven’t been diagnosed properly and may be on medication that is destructive to them and their loved ones. We need to do all we can, now that we have the means to let our voices be heard, to spread the wonderful “WORD.” back to top Bob Stanton My name is Bob Stanton from Northeast Pennsylvania. Thirty-nine months ago I began to experience what I thought to be laryngitis. When it went into the third week I made an appointment with a throat specialist. That began an odyssey through no less than five such specialists and twice to an endocrinologist. I got almost as many opinions as there were doctors. The gasping reached its peak about two months after the start of the problem. I went to a local ER and was given an exam that included an EKG. I was gasping so frequently the nurse practitioner curtly told me to stop the gasping so she could complete the test. If I could have stopped I would not have been there. The first solid clue I got was on ABC's program that dealt with SD. I later downloaded it and gained more insight into the problem. Once I learned that there was no cure I accepted that and decided there was no further need for our local experts. SD is certainly a problem for me but since the gasping has quieted down somewhat I can live with it. In fact I get some enjoyment out of reactions of people who inquire about my laryngitis. When I tell them I have had it for years they are astounded. Fortunately for me I am retired. Had I been still employed by Hughes Aircraft as a regional salesman it would be a different story. You know the old saying about the man who cried because he had no shoes until he met a man with no feet. back to top Serena Steele Joy: “To experience great pleasure or delight.” The word “Joy”… a tiny group of letters that evokes incredibly strong feelings in my mind. During my 48 years of living there had been only a few moments I could honestly call “joyous”: my marriage: the birth of my two beautiful daughters; and the “rebirth” of my family after several years of hard times. Perhaps some of the most intensely joyous experiences I have ever had occurred within the past two years. These were on the day a neurologist, Dr. Harriet Fellows, diagnosed me with Spasmodic Dysphonia (SD), and the months that followed when I received my first Botox injection. Anyone who has suffered with SD knows how devastating this condition can be. In my case, I was born with a Cleft Palate, which was repaired as an infant. My voice was always different sounding, but I never had trouble speaking until I was 14 or 15. My voice, for no apparent reason, began trembling and cracking. It often was an effort to make myself heard and understood. Hearing myself on tape one day in the middle school, as we read poems aloud, was turning point in my life. As an adolescent with low self esteem, this experience was just enough to destroy what little confidence I had. I became an introvert with only a few close friends; I rarely dated in school. Each day in class seemed an eternity. I was angry and depressed. I expressed myself in art and creative writing, but almost never spoke aloud in class. I ached inside with all the words I wanted to say and the ideas I longed to share. After high school, I was accepted into nursing school, and graduated as a Registered Nurse three years later. I made it through school saying as little as I possible could. Neither my teachers nor fellow students ever spoke about my speech difficulties causing me to feel further isolated and depressed. I was a good nurse in spite of, or because of, my disability. Through the years, beginning at age 15, I searched repeatedly for help for my voice problems, and was diagnosed improperly over and over again…sinus problems, improperly repaired cleft palate, overuse of decongestants, allergies, and my favorite, stress! As a RN, I had never heard of SD, nor met anyone who had a similar sounding voice, so I soon began to wonder if I was, in fact, a neurotic. Throughout my marriage and raising my children, I longer to participate in community and school activities, but did not have the courage to do so. I continued to battle depression on and off for years, and my voice seemed to worsen as I got older. My latest job as a visiting nurse became more difficult. It involved much verbal interaction and heavy phone contact. By the end of the day, I was exhausted mentally and physically from straining to be heard and understood. My jaw, neck, and shoulders ached from the exertion of forcing my voice. I was frequently mistaken for an “old lady,” or a very ill person on the phone. I envisioned having to leave nursing for good – my livelihood and my love – because I could no longer function as I needed to. My depression deepened. Then two years ago, a blessing in disguise occurred in the form of writer’s cramp which suddenly attacked my right hand. I began having debilitating spasms that could curl my hand into a claw whenever I wrote for any length of time. The nursing profession is notorious for the huge amount of paper work it requires. Not only was I becoming unable to communicate verbally, but I also seemed to be losing my writing skills as well! However this latest problem did prompt me to see a neurologist. Sure that I had multiple sclerosis or a brain tumor, I explained my systems to yet another doctor. After listening to me speak for few minutes, the neurologist astounded me with her opinion. She believed I had Spasmodic Dysphonia. This was a new and frightening diagnosis, but when I read a description of this condition from a copy of a seminar on SD, I knew immediately that she was correct. It described my life with SD perfectly. I wept as I sat there in her office, and cried again as I drove home that day. These were tears of relief, and release. They were tears of joy also – at last I was able to find out what was really “wrong with me”! After an MRI and a CT scan, which ruled out any brain abnormalities, I drove to Boston with my husband for the first visit with Dr. Charles Norris, Head of Otolaryngology, at N.E. Deaconess Hospital. After a brief workup, I agreed to try the initial injection of Botox into both vocal cords. In 1994, after over 30 years, I spoke for the first time without a tremor, crack, or strain in my voice! Within two or three hours after receiving the Botox injection, I was again experiencing one of the most joyous moments I had ever known! Even though my voice was breathy sounding, and I had very little volume for two to three weeks, I thought I had the most beautiful voice in the world! I suddenly loved talking on the phone – people even mistook me for one of my teenage daughters! My own mother did not recognize my voice. My husband thought I sounded sexy, and complete strangers responded to me more positively to me on the phone. The “new me” is enjoying life more, speaking my mind, sharing myself with others, and generally finding more joy in everyday things than I ever thought possible. The Botox, combined with speech therapy, and a mild antidepressant, are enabling me to love myself again. The SD Support Group in my area has also been a positive and comforting place. For the first time, I am meeting others with SD. I admire their courage, and have come to realize, thankfully, that my form of SD is not as severe as it could be. We are all encouraged to speak at the meetings, and share our experiences, successes, and difficulties. At our last meeting I met a new friend, Cheryl. We briefly shared some of our similar experiences with SD.SD hesitantly stepped closer to me, and gave me a hug. It was such a simple gesture, but, like the tiny word “joy” it made my heart fill with gladness. back to top Iris Miller Stetson On December 21, 1999 I was diagnosed with a severe case of spasmodic dysphonia (SD). Due to this condition, I first lost my ability to speak normally when I was around twelve years old; at the time of my diagnosis I was fifty-one. Struck with SD just before starting high school, I was very scared, lost and confused. As a teenager there were constant situations that induced a sense of shame and a lack of confidence around my speech. I became obsessed with it, and the belief that my inability to speak normally was my greatest weakness. It was natural that being unable to communicate would create constant frustrations, but I was also angry. I felt robbed of opportunities and aspirations. My dream of becoming an actress was now gone. In spite of all of this, I still believed in myself. And, in time, I realized that I was not robbed of everything. Although an inability may close some doors, I saw that it might also open others. I did not have a choice about how I spoke, but I could choose how to deal with the challenges it presented. It was in my hands to decide how I wanted to feel, and who I wanted to be. To rid myself of the negatives that had built up inside of me, I needed to stop focusing on my speech and pay more attention to other qualities. In my twenties I spent a lot of time working on building a positive attitude, and reminding myself to be grateful for all that I had. I learned that it was actually easier to be optimistic. Harboring anger and dwelling on negative emotions exhausted me, and took the fun out of life. Additionally, I became more aware and thankful for supportive friends and family, and being able to hone some of my non-verbal skills. Ironically, even though I could barely speak, I was a great singer. Developing this gift gave me some amazing experiences, like singing in the San Francisco Opera chorus and performing as a Flamenco singer for almost twenty years. When I reached my forties, the negative voices of my youth were gone. I was happier and more appreciative of everything, free of the sadness that I had always connected with my abnormal speech. The task of rebuilding myself had taken a long time but I felt empowered and renewed. I was finally operating with a healthy attitude, a strong awareness of my blessings, and something else that seemed to have naturally developed along the way – a passion to share the best part of myself with others. After my diagnosis, I was told that I would need treatments to help me speak for the rest of my life, and that I would lose my singing voice. I was crushed that I could no longer sing, but I moved on with the hope that I would quickly gain the ability to speak. It took me more than two years of therapy and treatments to learn how to speak almost normally again, and another five years to feel comfortable at it. After my speech was good most of the time, I finally realized and accepted that, no matter how well I speak, I am speech disabled, and that is okay. Not only did this acceptance embolden me, but it also pushed me to do something I had wanted but was unable to do as teenager: learn American Sign Language (ASL). In my late 50s, I began studying ASL, and now I am embarking on a career with the Deaf. I am passionate about this work that employs both ASL and my newly found gift of speech. Again, I feel renewed. These days, I can feel when my voice begins to fail me and I need another treatment. This used to alarm me, but now I smile a little when it happens because it reminds me of all the ups-and-downs I have encountered, and how I got to be the person I am today. Perhaps SD was not my worst curse, but my greatest gift. It forced me to try and improve myself, to keep going when I was ready to give up, to realize and have the courage to use my strengths, to never stop believing in myself, and to accept myself for all that I am. In the end, having SD taught me how to cope with whatever life brings, and treasure every glorious step along the way. back to top Susan Stockman My name is Susan Stockman and I have Adductor Spasmodic Dysphonia. It was very difficult accepting the diagnosis of SD after 3 1/2 years of searching for a diagnosis and cure. Being a business executive, teacher, trainer, group facilitator, and life coach for most of my professional life a diagnosis of SD felt like a death sentence. I perceived SD to be the death of my job, my social life, and the death of my ability to communicate with everyone important in my life including my children. The 8th doctor who examined me prior to diagnosis (a gastroenterologist) told me that "he had done all the tests he could and that he was giving up". He told me to prepare for a life without a voice. I was 42 years old. Three months later I was diagnosed by that same doctor's friend. I would not have found her had it not been for that gastroenterologist that gave me that devastating prognosis. Fate sometimes works in mysterious ways. In going to a NSDA medical conference, after diagnosis, I wanted to meet other people to hopefully inspire me along my journey with SD. The woman sitting to my left was voiceless and communicated with the help of her daughter who could lip read. The woman on my right was on SSDI and had learned to speak by sucking in air. Terrified is not a big enough word to describe how I felt about my voice-death prognosis. What I didn't know was that my best teachers were the people I was living with, not those at the conference. That understanding had yet to come. My three children all have Type 1 diabetes. I have helped them through some hard times growing up; the journey is still not complete. Living with people who have life threatening diseases gives you a whole new perspective on life with a disability. They, along with my life partner, were my teachers. I learned from them that SD was an inconvenience, not a disability. I learned that when your heart sinks because you can't order your own cup of coffee after Botox it's a momentary issue not a life long one. I learned that most people are willing to help someone in need albeit answer the phone, get someone's attention, order a meal at a restaurant, or communicate by email instead of voice. I learned that I am not my voice; my voice is a part of me. I learned to love myself and my new life with their love and support. It's funny how the world works in that way. I help you; you help me. At work I learned that a soft voice is soothing to the listener and people in need, often my colleagues, are drawn to my voice when I'm under the affects of Botox. I've learned that my friends don't mind having lunch at my house rather than a restaurant so that they can hear me and we can have a two way conversation. I've learned to talk with my hands and my eyes much more effectively. I've learned to sing Happy Birthday like Marilyn Monroe and laugh when appropriate about my breathy voice. I worried I would not be able to say “I Love You” to my kids. I learned that "I Love You" isn't said with 3 words. It's said in all sorts of ways. I've learned to forgive my imperfections and love my new vocal gifts. I've learned that other people change their energy when they speak to me; most of the time they seem more calm after our engagement. I've learned that what I say is more important than the tone and volume of how I say it. I've learned at work that a microphone isn't an embarrassing thing to use and that I am as functional, if not more, today than I was 7 years ago. I'm not as scared about my future, sometimes I still have my moments. With thought and consciousness I engage myself in my life to the fullest extent. I time my life out a bit more, primarily around my Botox shots, but take advantage of my vocal time outs and use the same time period to take better care of the rest of me. SD has invited me to put more balance in my life. It has also given me a new perspective on people with disabilities, which I would never have achieved without personally experiencing one. I love my life and accept my SD inconveniences. Having an enormous amount of love and support from the people in my life helped me heal. If only each person struggling with dysphonia or dystonia would have the same, our lives would be so blessed. SD is not a vocal death sentence, it's the beginning of a new journey and relationship with our voices. One we will learn a great deal from. back to top Alice June Thompson While living in Vermont in 1998ish, ‘it” suddenly happened. You know, the “crackling” sound. Oh my...what was that? Must be a mistake, a weird thing that was a "freak occurrence". WRONG! The local ENT doc said I had acid reflux and to stay away from chocolate. WHAT? No way. When I moved back to Martha's Vineyard about three years later, "it" was getting more frequent. For several years, my second income was singing in church at weddings and funerals. What really concerned me was, as I was singing a solo, I hit this note that was out of nowhere, off the charts and way off key. YIKES! How embarrassing! (Even the group leader turned around and gave me this look of "What the heck was THAT?") I knew something was really up because I had no control over the "sour" note. The Vineyard has limited services and no voice specialists, but there's an ENT doc that visits once a month and I met with him. He referred me to another ENT in Quincy, MA who said that I might have Spasmodic Dysphonia (SD). I asked him to repeat what he said and what does this mean? (At least I found out there's a name for "it".) He referred me to the Voice Center at Mass General Hospital in Boston. I spent the day with the docs and techs taking a battery of voice tests. (I must say, I had hope that my voice would become "well" again....that I would get my voice back.) Meanwhile, I remembered this woman living on the Vineyard who's voice sounded similar to mine. We met for dinner and I had this sense of belonging just talking with her about our common malady. I realized I wasn't alone. WOW! Someone else knew how I felt, understood when I said I was grieving the loss of my voice and that I was depressed. We talked about the different ways people respond to our voices: "I can't hear you." "Please speak up." "You poor thing, do you have laryngitis?" "You sound so sexy!". "How long have you been sick?" One day at a time I'm choosing to live in the solution. I have to laugh because I did so much talking prior to SD, that I think God wants me to do more listening. Anyway, all we really want is a "good listening to". This journey has given me more compassion for others. Gratitude is so much more a part of my daily life. After a lot of prayer, research and questions, I'm getting up the courage to have Botox injections. The closest doctor is in Boston which is a full day trip between the ferry, bus and walk to the doctor's office. But hey, I'm worth it, and so are YOU! I am truly grateful to have found the National Spasmodic Dysphonia Association and appreciate the opportunity to tell part of my "story." back to top Jinny Thompson MY STORY…dedicated to all the daily warriors I exist in a world far different from the one I had imagined for myself…not a bad one, just different. I teach saxophone in Brown County, Indiana. My students know I sound funny, but they don’t seem to care. Most of them care about their own lives, which is as it should be at their age. But I also believe that, inherent in my teaching, is a lesson of compassion for others, and this more subtle “voice” may be the one that they use, along with their musical skills, as they become mature adults. A junior high student asked me if I thought that she was different. I told her we are each different. It is how we use our differences that counts. I grew up in a world that was not so different, in a small town in the 60’s, where I made good grades and received prizes for saxophone performance, and ultimately a college scholarship to study music. My mom attended an honors program when I graduated from college, where, as she loved to remind me, the speaker predicted that half of us would fail in life, that being a good student was not an assurance of later success. Like a curse that seemed to follow me, I floundered for several years. But, living in Chicago with my husband, Mark, I finally found my place. Kelly Services sent me to work for a celebrity violinist in town for whom I handled the phones, booking his engagements for corporate events, weddings and concerts. When my employer relocated to the suburbs, Mark encouraged me to begin my own business in the city, which I did. For nearly 20 years, it enabled me to meet the most wonderful people – musicians and clients – and, although financially I was never a huge success, I had discovered my niche. Then my voice faltered. Telephone communication had always been more difficult for me than face to face meetings. I could be more animated in person and I loved the contact with people. Maybe for years I was stressed when talking on the phone. I would practice phone conversations before making calls, and do breathing exercises before picking up the receiver. When I began to break up on the phone, it felt like something had interfered with the natural rhythm that occurs between breathing and speaking. Although I could still blow a saxophone, I had pulmonary function tests, which, of course, showed nothing. I decided it was “all in my head”, which was actually true, only it had nothing to do with my imagination. I was approaching 50, and I had heard much older people talk like I did. I felt old and vulnerable. Several tests and a few years later, I was diagnosed at Northwestern University Medical Center with spasmodic dysphonia. About that time I attended a dystonia conference in Chicago. Never again would I feel sorry for myself. I have tried Botox twice, but, perhaps because of the additional complication of a tremor, I have not been happy with the results. I have learned, as most SD patients do, to speak in short sentences and to choose my words carefully. I guess you could say we think on our feet! There is always much I wish to say that I cannot. I felt in the beginning that I had lost myself. I could not convey the very core of my essence anymore. On the occasion of Mark’s 50th birthday in the year 2000, we discovered a log cabin in the Hills of Brown where we decided to shift our fortunes. We had grown up not too far away and wanted to be closer to aging parents. Mark was able to continue his job, and I, having given my accounts to a musician friend in Chicago, wondered what life had in store for a person with a damaged voice. A call from the local band director settled that. I began to volunteer, teaching 7th grade beginners; then, although I never intended to do more, I became so attached to them that I have followed them through their high school careers. This year I have 30 students. I “play” a lot with my kids. I feel that an example is better than a vocal explanation anyway. They have taught me to better understand my life. Sometimes they are not focused and cannot play well. I stop them, take a deep breath, and ask them about their lives. We talk – or I listen – and when we come back to the music they play beautifully. If I listen well, I can hear all of the emotions that make up our universe in their voices. And I am at peace, for I believe that now I am one of those students who succeeded. back to top Linda Van Den Brink This is so great that I can tell the world about me living with SD now for 25 years. My name is Linda, born December 23, 1951, in Holland. When I was 18, I moved to San Dimas, California, and got married and had two wonderful children. In 1983 when I was 32-years-old, from one day to a other my voice was GONE. Just like that. No warnings. It was the biggest nightmare off my life. I could not call my family because the voice was gone. I drove myself to the hospital, and wrote down for the doctor what my problem was. He looked at me like I was mad. My children and husband also thought I had lost it. Nobody knew what the problem was. Some doctors told me just do not talk for a couple of weeks. Nothing helped. After a while I got so bad that I decided to go back to Holland, and return to my mom. Maybe she would understand me. My cousin helped me with my divorce papers. SD ended my life in the USA for me and my children and dog. When in Holland things did not get better, maybe worse. In Holland also nobody knew what was wrong with me. My children were upset because I took them to Holland, and too top it off they couldn’t communicate with me. It took 10 years to find out what was wrong with me. It happened the day that I was watching TV and some Dutch talk show came on. That is the day my life turned around. There was a woman talking about her self, and she had the same symptoms as me, also she said which doctor to go to. Right away I went to see him. They made a tape of me talking. He said you have spasmodic dysphonia. Still I couldn’t believe it. He was the first one to give it a name. In this country I was one off the first ones to get the Botox shots. Thank you god they helped me so much. Every four months I go there. No, it’s not perfect but for me it is. By the way, my kids went back to the states and doing well. Also I have a granddaughter. You know what is so funny, I still do not like talking on the phone. So sorry for the mistakes in my writing as it took a week to write this letter since I have to write in English but it’s so worth it. I hope it helps somebody out there. You guys are lucky; Holland only has one doctor to do the Botox shots. When it comes to that, America is so much better. Yes, I am in the wrong country once again. back to top Estelle Waslosky In March of 2008, Dr. Stephen Goldman, the speech pathologist, who has been there since the beginning of my Botox experience, reminded me that I had a Botox anniversary; this was the twentieth year since my very first shot. I am not sure how many years I had had spasmodic dysphonia without knowing what it was; nor did anyone I had gone to for help know what it was. The tremor started sometime in the seventies. I had a cold which seemed to turn into laryngitis. When it didn't go away, I started my round of doctors: family physician, ear, nose and throat, neurologist, speech pathologist, acupuncturist, and psychologist. Actually, my best advice on how to cope came from the psychologist who asked me what I told the kids in the classroom about my condition, and I said, "Nothing." I just go on as I always have. He said. "Why don't you tell them about it? I thought about it and did. I told the classes and their parents on back-to-school night. I told them I didn't know what this condition was called, but it seemed to be here to stay. It was not life threatening nor contagious, but it certainly was a major annoyance; however, I believed I could still be an effective teacher. I taught for 18 years with my pre- botulinum voice. In all that time, I only had one student whose parent requested that her child be transferred to another class. I transferred to the high school level. I enjoyed the change; however, it was getting more difficult to talk I needed to work and couldn't really think of anything I could do that did not require a voice. I heard that Dr. Dedo in San Francisco was doing surgery on one vocal chord which stopped the tremor. I went to see him, but I felt uneasy. Friends of mine discovered a doctor in Los Angeles that they said was the doctor for the stars and insisted I go to see him. I did and he advised me to wait. He said, "As long as you are teaching, and I don't know how but you are, wait a little longer. I think there is something coming along." Not too long after that, A friend of mine who lives in the East sent me an article from the Health Section of the New York Times. The article was about a break through in a condition called Spasmodic Dysphonia. I wrote to him; he wrote back and said I sounded like a prime candidate. I was fortunate that UCSD was one of the three universities testing this new procedure. I went, was accepted in the trial program, and have been thankful ever since. I am grateful to the excellent doctors who have treated me over the past 20 years, especially to Dr. Lisa Orloff with whom I was with the longest. My favorite story is about the reaction to my first botox shot. I had it during spring break and did not tell anyone at school what I was going to do, First period began: I started to talk. I saw the kids looking a each other, and finally one young man raised his hand and said, "What happened, Mrs. Waslosky?" I told them, and I think they were as elated as I was. When they went to their next class, they told their respective teachers "Go to Mrs. Waslosk’s class . Ask her to talk." I had a steady stream of visitors the rest of the day. Right up there with my wedding day and the birth of my children, I think that day is etched in my heart. As I read this over, I realized I wrote about my history of living with SD, but I I did not specifically answer the questions on how SD impacted my life for the better, what lessons I have learned, and how SD has made me live my life more boldly. I am not sure that SD has done those things. I loved speech and debate in high school. We won the 1948 Massachusetts State Debate Award. I still wish I had that voice, but I did learn the importance of family, friends, and coworker/friends who were there for the whole cycle: before, during, and after SD. SD has been a part of my life for almost 35 years. I've coped with it and learned from it, but the best part was receiving help for it. back to top Brian Watts This amazing journey began without any warning at the age of 44. I am in the banking profession and my wife and I were in the process of opening her an antique store. So dealing with the public daily both in person and on the telephone has always been a major part of my career and life. It started initially as light hoarseness and eventually got worse. People on occasion as I remember when it first started would sometimes tell me on the phone, “Hey I know who you sound like, Bill Clinton”. Well, soon those comments stopped as the hoarseness progressed and became worse. Even on occasion my family doctor would say, “Man sounds like you’ve got a bad cold.” I would have to correct him and explain that really I don’t know what I’ve gotten and need his help. After trying allergy shots weekly for two years with no results, and trying acid reflux pills regularly for close to a year I visited my ENT and explained that I have tried everything I know and that has been requested by other doctors. I recall him mentioning in the past the option of Botox injections. He said that before trying Botox he would like for me to try one last thing, speech therapy. Every week for 5 months I would take off of work and travel out of town to a speech therapist. After it became evident that these sessions were not working, the speech therapist had my records reviewed by other doctors. She met me one day and explained that she has tried everything she knew, and after consultation with other doctors in her group she request that I go back and visit my ENT, take her records and notes for his review. By now I was getting more frustrated and tried daily to not let it show. Customers at both the bank and while working at my wife’s store would occasionally pull me off to the side and say “Hey, you really sound rough, how long have you had that cold ?” Or the clincher is “ Listen, you really need to have that looked at because you might have throat cancer.” Boy, let me tell you, after hearing that one two or three times, you can really sleep well at night. Then you really look forward to the next person calling you off to the side to ask you about your voice. However, I do have to commend my employer at the bank for working with me through all of these various doctors visits. Periods where I know they had to be getting frustrated with my voice. But they never showed it if they did get frustrated. My job involves several meetings weekly with other employees and departments, besides meeting with customers both in person and via the telephone. Yes the thought did cross my mind several times while on this journey that they might cut me loose or possibly reassign me to another department. But they didn’t and they allowed me to continue with my job while I searched for an answer. My wife also deserve credit for helping to nudge me along to go see another doctor once one door seemed to close with no answer. For without her support and encouragement I may have given up and just been content to live with a rough hoarse voice that on many days people had trouble understanding what I was trying to say. The ladies at the drive-through restaurants really hated to have me pull through and try to order. I would say, “Can you supersize that?” and they would answer back “Say you want a sundae with that ?” Face it, we all have to try and find some humor in life’s journey. The answer came five years later as a result of a referral from my ENT to the Emory Voice Clinic in Atlanta. Dr Johns and Eadie Hapner of Emory examined me and verified that I had Spasmodic Dysphonia. They suggested I try two Botox injections. The results are amazing. Yes I have a period of breathiness for one to two weeks after the injections, but then I do start to get my regular voice back. Family, friends and everyone at work are amazed at the difference that it has made by taking the Botox. I would encourage anyone with persistent hoarseness or a rough voice, consult their ENT and have test done to determine the nature of the voice disorder. I am thankful that through this journey I have found the answer. The shots may only last for periods of 60 to 90 days, but it is well worth it. There really is help. Don’t put it off. back to top Lee Webster Life begins at 30. Suddenly, your voice starts to skip. Occasionally. Certain words do not make it all the way out of your mouth. You think it is nothing. Then (maybe a few months later?), every time you pick up the phone, more words are skipped. They are like hiccups. People start to ask if you if you're sick. 'Do you have a cold?' they inquire, sympathetically. You start to say "No", but only "N--" comes out. Silence. People don't know what to say. And you don't know what you can say. Your husband thinks you are fine. "Haven't you always talked that way?" he asks, sympathetically. “N--,” you answer, because now the hiccups happen even when you aren't on the phone. Are you crazy? You're beginning to think so. One otolaryngologist looks down your throat and says you are fine. No signs of cancer or anything bad, it seems. You are crazy, you think to yourself. Finally, after years go by, and when you can barely speak, and you're miserable, and you just know that something is wrong, you get referred to a better otolaryngologist. You walk into his office and he says: “Sounds like spasmodic dysphonia.” Yes! Finally, somebody gives you a NAME for it! You get the information that was missing. You get the Botox shot and.... You can talk again. You can speak your mind! You don't have to shorten every sentence in your head, and think about which words will come out easier, and avoid other words because you just KNOW that they won't come out because --- now you can TALK! You can order dinner at a restaurant. You can make doctors appointments over the phone! You can go back to work...You can communicate. Now, looking back: Without that missing piece of information, life was miserable. But you've learned that you've got to keep looking for the answer -- you've got to keep searching until you find it. back to top Steve White It’s been a saga. It's almost eight years now. I was a Senior Vice President of Pharmaceutical Operations for a major Pharmaceutical Company. When it started I noticed a very intermittent lose of voice. I remember asking my physician during a routine check-up and he brushed it off as a sinus problem. Several speech therapists later, GERD drugs and self-imposed abstinence from alcohol and coffee my strangled voice became who I was. I moved on to Botox with mixed results after a frustrating few weeks of recovering my voice at all. I took a foray into a few alternative approaches with hypnosis, bio feedback, psychoanalysis, yoga and a general dedication to healthy life style, all the time plagued with my strangled voice. Most recently I became a patient at NIH, volunteering for a few clinical trials and getting Botox at the tax payers expense. A vivid memory of hearing the "experts" come back after an examination and conferring on my symptoms with a definitive diagnosis. "You have adductor spasmodic dysphonia". All along there had been a lot of denial and frustration and hope that I could will my way out of it. I have spasmodic dysphonia...I have spasmodic dysphonia. It still doesn't seem real. Why me? I think about how my life has changed since spasmodic dysphonia. All the time spent contemplating when I will have to talk. Fear of cocktail parties. Repeating my request for a diet coke to myself so when the flight attendant gets to me it comes out intelligible. Unable to really give my son that "lecture" about life and what's important. A growing feeling of isolation. Looking at people who are chatting and laughing with envy and remorse. And then acceptance. Seeing people with ailments and wounds and personal issues that tell me to work with what I have. Develop strategies to make it work. I've also met a lot of great people fighting through this just like me. My speech therapist and support group have been great. These are people who can relate to the same things as me. I can be with them and relax and feel accepted. I also see that I'm not even as bad off as some of the others who manage with grace and poise. It's been a long journey but with the love and help and support of friends and family I'll be OK. back to top VaLoy Woods Hello, my name is VaLoy Woods, I live in Mesa, Arizona, for the last 6 years or so. I moved here in 2003 and by the fall of that year my voice was very broken up. Hearing only parts of my words and thinking that is was some virus or laryngitis, I had no Idea until I seen a specialist in the spring of 2004 that it was SD. My doctor new in 10 seconds of talking with me and told me that he listened to Diane Rehm’s radio station for a long time and new before she did that she was effected by SD. Watched her show go off the air and her coming back on. He told me on a scale of 1-10 that I was a 9 and probably had both kinds, abductor and adductor of SD. Was one of the worse cases he had seen. Referred my to Mayo Clinic and Dr. Bansberg and I went and seen him. He told me the options and I chose Botox treatments. Starting at every 4-5 months for the first 3-4 years to now I can go as long as 5-6 months. My family took along time learning and understanding exactly what it is and never hearing of it before it took a lot of explaining over and over especially to elderly grandparents. My partner and I have been through so much in our lives besides my SD, and he has been able to see the effect on my life, and though not verbally, he supports me and my plight. I try to learn what I can about it and what I see on news, internet, and e-mails from NFSD, I am so grateful it does not happen to more people. It is a hard thing to live with, and causes great self-esteem problems and depression in your life. I have a number of other health issues and I have an Idea what may of caused my SD. It really could have been a number of trauma incidents in my life. I am in my 40's and being a woman I am the perfect person for its normal people it happens too. My story is not bold and positive things have not happened because of it. In fact my life is very strange and confusing as to why my decisions and where I am in life is the way it is. I won't go in to that because it is negative. I can say it was a real eye opening experience and is just another constant reminder that you have no control in life what happens to you. I do wish the best of all effected by this menacing thing. And admire all that continue to make the best of things and push for the funding for research, make sure the education goes on, and does anything that they can contribute to helping all with anyone affected by it. I pray it won't happen to my children or grandchildren. back to top Arwyn Yarwood-Hoeppner We all have dates that stick out in our minds. On a global scale, those who were around to experience the news of the assassination of John F. Kennedy, the fall of the Berlin Wall, and the terrorist attacks of September 11, 2001 are unlikely to forget them. On a more personal scale, a person may clearly remember the events on the date of a wedding or a birth of a child. April 5, 2003 is one such date for me. That is the date that I lost my voice. I remembered speaking to my boyfriend, now husband, one morning after we woke up. I thought it odd that my voice was cutting out, yet I had no cold symptoms or any pain while speaking. That was the Saturday before my 22nd birthday, and I had a birthday party planned that weekend. I had told friends and family I was not going to talk much in hopes that my voice would come back. Yet, in the days following, it never did. At that time, I worked in a call center. I had coworkers accuse me of making up the illness to get out of work, yet they knew that I had a roommate that had been recently deployed to Iraq and that I had to pay for the apartment by myself. My hours were cut back, and I constantly had doctor appointments to try to determine was my voice problem was. Due to the toxic work environment, I quit my job, and remained unemployed for a few months before finding part-time retail work. Retail was not much easier, and I remember times when customers would walk out or whisper back to me when I would try to talk to them. I started my job without insurance, so I was not seeing my doctors anymore about my voice. A couple of years went by with my husband and I struggling to make ends meet, and my late friend Ann asked me what my voice problem was. I never got an official diagnosis, and she inspired me to see what I could find. I finally found my answer: spasmodic dysphonia, specifically the abductor type. I remembered telling my husband about one word that people with the abductor type had difficulty saying. I said, “This is ridiculous. I can say the word pu—" and then my voice trailed off. The word was “puppy.” They say that names give you power over things, and that phrase definitely applied here. Now under my husband's insurance, I went to the same doctor I saw years earlier to get diagnosed. I told him my concern was that it was spasmodic dysphonia, and after some tests, it was confirmed in March of 2006. Since my diagnosis, my life has radically changed. Now having a name for the disorder, I went to my state's Division of Vocational Rehabilitation to see if I could find some work that I would be able to do. I was able to get training in medical transcription. From there, I did a work study, and eventually landed my first full-time job in since I worked at the call center. I had been speaking to my father around the 5th anniversary of my getting spasmodic dysphonia earlier this year. I really had not looked at it in a positive way until he mentioned how much I had accomplished since I had gotten spasmodic dysphonia. Since that time, I got married, had two children, went back to school, and got a well-paying job. At the time I was speaking to my father, I was in the process of getting my first house, which I moved into in the summer of 2008. Today, I continue to look at getting spasmodic dysphonia in a positive fashion. Although I had documented my experiences before, in spring of 2008 I was inspired to write a blog dealing solely spasmodic dysphonia, encouraging those who have it to not give up, but instead look at options available to them. Despite the fact I am notoriously shy in public, I created some videos that I posted on YouTube and my blog featuring me speaking, further getting the word out about the disorder. I know what it is like to be at your lowest from this disorder, and I hope that my efforts help provide others with the support and encouragement they need. back to top Please note: The NSDA does not endorse any of the medical treatments mentioned in the essays and editorial content belongs to the author. NSDA is not responsible for any errors. |
