News Archive

The Experience and Impact of Reading the "Share Your Story" Entries

More...

By Mary Bifaro,
NSDA Support Services Director and SYS Committee Member

When reading the entries of the NSDA’s “Share Your Story” Contest on our website, I felt a whole gamut of emotions. One of the first feelings that emerged was one of pride in the NSDA, and in the close to 80 people who told their Spasmodic Dysphonia story. I applaud all those who responded to the NSDA’s invitation to let their SD voices be heard. This contest is one of the latest examples of how the NSDA continues to distinguish itself as a patient-driven organization and invite members’ participation in achieving our mission. The “Share Your Story” contest is truly one “of the people, by the people, and for the people” who are affected by SD.

The essayists in our “Share Your Story” contest exhibited a willingness to talk about what they went through on their SD journeys. They discussed their symptoms, how they came to be diagnosed, what treatment options they selected (if any), and the resulting effect on their spasmodic dysphonia voices. They discussed how a diagnosis of spasmodic dysphonia affected their self-esteem and self-concept. They talked about life lessons learned from being a spasmodic dysphonia warrior. They elaborated on the reactions they received from others due to the sound of their voice. They shared the “highs” and the “lows” of their SD journeys.

A common theme expressed by the entrants was that having a chronic physical inability to speak has made them more sympathetic to others who are struggling. They described a humbling loss and a change in their lives. Grappling with the reality of having SD made them summon all the coping skills that they could come up with. Many essayists also related that having SD has made them better listeners. Communication was something that they would no longer take for granted. They were well aware of all the problems they were experiencing in communicating, and they were doing their utmost to make the best of a difficult situation.

Many contestants expressed their gratitude to the NSDA for sponsoring this contest and for the important work that it does. A number of the SD personal stories talked about how much help and encouragement they have received from NSDA support groups, NSDA symposiums, and the NSDA bulletin board. They expressed an appreciation for being in the company of others who understand what they are going through.

The courage and toughness displayed by the entrants of the NSDA’s “Share Your Story” contest is evident. They demonstrate perseverance in overcoming the frustration and embarrassment of not being heard or understood. They show resilience in pushing forward in their personal and professional lives. They make decisions to accommodate their voice impairment. They ask others to work with them so that they can fully accomplish their goals.

After coming to grips with their SD diagnosis, the storytellers demonstrated hope for themselves and for their future. They realized that they are not alone, that there are others going through what they are experiencing. They don’t want SD to define who they are. Rather, they show a desire to rise above the challenges of having SD. They are resolute in their determination to live their lives boldly. They are willing to make changes in their lives so that they can reach their potential.

Some of the writers changed careers and found greater satisfaction in new places of employment. Others found successful treatment which enabled them to keep the jobs they had been doing before SD entered their lives. Others found a place in service to the spasmodic dysphonia community

Some of the contestants sought consolation from their spiritual life or counseling. Some expressed that fellow SD patients showed them how to live with SD. Many essayists were grateful for having a sense of humor to help them get by with their SD voices.

They talked about their disappointments too in the reactions expressed by others. They were surprised that others would think that they were making the problem up or were told that the problem would go away if they would only relax. They related their tales of conflict with insurance companies, with their employers, with their friends and with their family. They talked about battling with themselves over their feelings of desperation, humiliation, shame, and self-blame.

The emotional stories submitted in the “Share Your Story” contest are touching and easy to relate to. I came away from reading them with a strong feeling that “if they can do it, so can I”. These everyday SD heroes have an indomitable spirit. This spirit allows them to overcome their fears and get back up after they have fallen down. Reading these inspiring essays reaffirmed my commitment to stay involved with the NSDA and connected with fellow SD patients. Their stories challenged me to consider making further changes to help me cope with SD. Most of all, the participation by close to 80 SD patients in our “Share Your Story” contest gave me hope to never give up, and to keep on trying.

Spasmodic Dysphonia Featured on ABC's Medical Mysteries Program

More...

Spasmodic Dysphonia: When No Words Come Out
Men and Women Living With Rare Condition Struggle to Speak
By MARY HANAN
Aug. 16, 2008


Scott Adams is the cartoonist who gives Dilbert a voice -- a gift he wishes he could give himself.

"It feels like you're being strangled from the inside out," he told ABC News' David Muir.

That's right -- strangled. Adams said he literally chokes on his own words. It's a strange and isolating condition that began after what seemed like normal laryngitis.

"I couldn't talk normally for over a year," Adams said. "I still don't talk normally."

National Public Radio host Diane Rehm has been stricken with the bewildering condition as well.

"I was sounding so bad," she said, "I thought they must be thinking, 'What is this woman doing on the air?'"

Watch "Medical Mysteries" Tuesday, August 19 at 10 p.m. ET, and go to ABCNews.com during the show for your chance to be the doctor and diagnose a disease.

And the radio host and cartoonist are not alone. Ken Michaels' voice is vanishing also. His wife, Raychene, said his voice sounds tremendously different.

All three say they've spent years searching for an answer and a cure. For nearly a century, the medical consensus was that this type of mysterious loss of voice was psychological. Doctors believed people suffering from it, for some reason, didn't want to talk.

But Michaels and the others say they'd do anything to speak normally again. "Primetime" traveled with Michaels as he visited Dr. Paul Flint, who finally gave him a correct diagnosis.


Spasmodic Dysphonia
"It was obvious when he came in that he had spasmodic dysphonia," Flint said.

About 30,000 Americans suffer from this condition, also known as "strangled voice." Doctors believe it's caused when part of the brain misfires-- the same part that causes Parkinson's disease.

"Spasmodic dysphonia is a neurological condition that affects a patient's voice," Flint explained, "and it does so by creating abnormal tension within the throat muscles when they're trying to speak."

For Michaels, it was a great relief to finally know what was wrong with his voice. But not all the news he heard was good. Flint told him spasmodic dysphonia is manageable, but incurable. And the way he recommends treating it? Of all things -- Botox.

That's right -- botulinum toxin. The same poison used to paralyze facial muscles and erase those furrowed brows and wrinkles can apparently bring back your voice.


Botox
Flint explained that if the shots worked, Michaels' voice would come back gradually. It would never sound exactly the way it used to, but it would be fairly clear and strong, and the treatment should last for a few months. For Michaels, it was definitely worth a shot -- one directly into the vocal chords, to be exact.

Since the effects of Botox are fleeting, Diane Rehm's been getting shots in her neck about every three months for nearly 10 years. And they work well enough to keep her on the air.

About a month after Michaels' first injection, his voice was remarkably different. No more stops and starts. It was a nice, mellow baritone. Even he was surprised at the way his voice sounded just four weeks before.

"I didn't realize I sounded that bad," he said. "That's awful. I think I could see it on other people's faces, though, that they were trying hard to understand me."

Which is precisely why Scott Adams' wife, Shelly, requested he get a Botox injection before their wedding day.

"I wanted to make sure that he was able to say, 'I do.'" She told us. "I wanted to make sure it was clear."

And it was. But Adams wasn't completely satisfied with the results of Botox. He didn't like the sound of his voice with it. Not only that, the effects only lasted about a month in his case.


Beyond Botox
So Adams has been trying other options. Like something called direct voice rehabilitation. It's a kind of voice therapy created by Dr. Morton Cooper that uses humming and breathing techniques to teach people how to speak clearly again.

And though his voice has improved, it's still not back. He told "Primetime" that his voice was in the top 5 percent of its range the day he was interviewed. Adams said he usually has to struggle much more to get his words out.

So now, he's decided to take a drastic "last resort" -- a surgery to re-route the nerves to his vocal chords. It's an operation surgeons have been trying to perfect over the past ten years. There's a risk that it may leave Adams with little or no voice at all. But if successful, it may finally bring his voice back for good. He won't know for months, when the nerves have had a chance to heal.

In the meantime, Adams has discovered an irony in all this. His comic strip characters, Dilbert and Dogbert, are also missing something -- their mouths. But they still have a voice. And he hopes he'll get his back too.


Changes in the Brain Identified in SD

More...

Focal White Matter Changes in Spasmodic Dysphonia: A Combined Diffusion Tensor Imaging and Neuropathological Study

Authors: Kristina Simonyan, Fernanda Tovar-Moll, John Ostuni, Mark Hallett, Victor F. Kalasinsky, Michael R. Lewin-Smith, Elisabeth J. Rushing, Alexander O. Vortmeyer, Christy L. Ludlow

The full article on this study was published in Brain (2008): 131(2), 447-459,

Abstract
Spasmodic dysphonia is a neurological disorder characterized by involuntary spasms in the laryngeal muscles during speech production. Although the clinical symptoms are well characterized, the pathophysiology of this voice disorder is unknown. We describe here, for the first time to our knowledge, disorder-specific brain abnormalities in these patients as determined by a combined approach of diffusion tensor imaging (DTI) and postmortem histopathology. We used DTI to identify brain changes and to target those brain regions for neuropathological examination. DTI showed right-sided decrease of fractional anisotropy in the genu of the internal capsule and bilateral increase of overall water diffusivity in the white matter along the corticobulbar/corticospinal tract in 20 spasmodic dysphonia patients compared to 20 healthy subjects. In addition, water diffusivity was bilaterally increased in the lentiform nucleus, ventral thalamus and cerebellar white and grey matter in the patients. These brain changes were substantiated with focal histopathological abnormalities presented as a loss of axonal density and myelin content in the right genu of the internal capsule and clusters of mineral depositions, containing calcium, phosphorus and iron, in the parenchyma and vessel walls of the posterior limb of the internal capsule, putamen, globus pallidus and cerebellum in the postmortem brain tissue from one patient compared to three controls. The specificity of these brain abnormalities is confirmed by their localization, limited only to the corticobulbar/corticospinal tract and its main input/output structures. We also found positive correlation between the diffusivity changes and clinical symptoms of spasmodic dysphonia (r=0.509, p=0.037). These brain abnormalities may alter the central control of voluntary voice production and, therefore, may underlie the pathophysiology of this disorder.

Lay Summary of Research
Spasmodic Dysphonia (SD) is a neurological disorder characterized by involuntary spasms in the laryngeal muscles during speech production. Although the clinical symptoms are known, the brain abnormalities underlying this voice disorder remain unknown. Using magnetic resonance imaging (MRI) available in most hospitals, no brain abnormalities are seen in persons with SD. However, when some specialized techniques were used, referred to as Diffusion Tensor Imaging (DTI), we found structural brain differences in patients with SD in comparison with normal speakers. This study compared 20 SD patients and 20 healthy subjects using this specialized technique. The connecting pathways in the brain from the cortex down to the brain stem region, where the neurons controlling the laryngeal muscles can be found, were measured on both sides of the brain. In this study, the connecting pathway on the right side of the brain from the cortex to the brainstem showed some thinning suggesting that some of the fibers from cortical neurons going to the brainstem were either injured or losing their myelin covering.

We also studied a brain that was donated by an SD patient and their family and compared it with brains of people who had normal speech. No gross abnormalities could be seen in the brain of the SD patient in comparison with the three controls. However, when we closely examined the region that showed abnormalities on brain imaging with DTI, we found some thinning in the same region—the right internal capsule, which carries fibers from the laryngeal motor cortical region towards the brainstem motor nuclei for laryngeal muscle control. In addition, in regions of the basal ganglia, thalamus and cerebellum we also found clusters of mineral accumulations, which contained calcium, phosphorus, and iron. This indicates that some abnormal processes have occurred in the brains of persons with SD but does not tell us what caused those abnormalities.

This study is important because it is the first time we have found abnormalities that may underlie the development of the voice disorder in persons with spasmodic dysphonia. The next step will be to determine what has caused these abnormalities to occur. Studies of abnormalities in proteins that may have produced the build up of these deposits in the brain will be required to unravel the cause of SD.

SD Research Program Launched and Scientific Advisory Board Appointed

More...


The National Spasmodic Dysphonia Association announced its new research program in 2007. We had a call for research applications for new investigator startup grants or post-doctoral study on research aimed at increasing the understanding of Spasmodic Dysphonia.

These small grants will be awarded to new or established investigators in the amounts of $10,000 and $20,000 per year. This funding usually serves as "seed money" providing the funds needed for preliminary data before generating even greater funding from the National Institutes of Health.

The recipient(s) will be announced after the grants are reviewed and ranked by the new NSDA Scientific Advisory Board and then funding is approved by the Board of Directors. We were pleased to receive quality applications this first round and hope to distribute $50,000 this inaugural year.

To assist in the implementation of the new research program, the NSDA has established a new Scientific Advisory Board.

The Board is charged with:

  • Reviewing the research grants on an annual basis and making recommendations for funding to the NSDA Board of Directors;
  • Advising the NSDA Board of Directors as to the state of research in Spasmodic Dysphonia including what directions should be pursued and possible mechanisms that could be utilized;
  • Stimulating interest in research in SD.


In addition, the Chairperson of the Scientific Advisory Board will serve as chief advisor to the NSDA on all research matters that would further the goals and purposes of the Association and call meetings of the Advisory Board at his/her discretion or upon request of the NSDA Executive Committee.

The following people have agreed to serve on the Scientific Advisory Board:

Christy Ludlow, Ph.D., Chair
National Institutes of Neurological Disorders and Stroke, NIH, Bethesda, MD

Gerald Berke, M.D.
UCLA, Los Angeles, CA

Craig Evinger, Ph.D.
SUNY Stony Brook, Stony Brook, NY

Chris Sapienza, Ph.D.
University of Florida, Gainesville, FL

Carlie Tanner, Ph.D.
Parkinson's Disease Institute, Sunnyvale, CA

This is a major step forward for the NSDA and for the understanding of Spasmodic Dysphonia.

CEU Course Available on Spasmodic Dysphonia

More...

The National Spasmodic Dysphonia Association is pleased to announce its collaboration with WE MOVE on a case study entitled Case Study: The Use of Botulinum Toxin in the Treatment of Spasmodic Dysphonia as part of their initiative The Role of Chemodenervation in the Management of Hyperkinetic Movement Disorders. This case, in addition to four exercises on the foundations of chemodenervation and five other condition-specific cases, may be accessed through the WE MOVE Movement Disorder Virtual University CME Classrooms.

The case study on the use of botulinum toxin in the treatment of spasmodic dysphonia examines the different types of SD, the tools used in the assessment of this condition and the commonly employed doses of botulinum toxin type A in the treatment of adductor-type spasmodic dysphonia. The case was authored by Stephen Bansberg, M.D. Assistant Professor of Otolaryngology at the Mayo Clinic College of Medicine.

This activity is designated by WE MOVE for up to 1.0 hour of AMA PRATM Category 1 credit. WE MOVE gratefully acknowledges an unrestricted educational grant from Allergan, Inc., through which we are able to produce this activity and provide CME credit to physicians.

To participate in this free CME activity, log onto to the WE MOVE Movement Disorder Virtual University CME Classrooms and click on the lesson's title, linked to the activity at www.mdvu.org/classrooms/cme.

About WE MOVE
WE MOVE is a not-for-profit (501 C3) organization dedicated to educating and informing patients, professionals and the public about the latest clinical advances, management and treatment options for neurologic movement disorders. The Movement Disorder Virtual University is the healthcare professional’s source for movement disorder news, resources and educational activities.

Easier Done than Said...Living with a Broken Voice: New Book on Spasmodic Dysphonia

More...

Easier Done than Said...Living with a Broken Voice is a new book written by those who suffer from SD, and professionals who work with SD patients. It is a compendium of shared experiences from within the SD community.

This book is designed to:

• Provide comfort and guidance to those who are struggling to understand spasmodic dysphonia;

• Explain to family, friends, co-workers, and other interested parties the challenges faced by people with spasmodic dysphonia; and

• Bring spasmodic dysphonia to the general public’s attention.

For those who have been coping with SD for years, we hope this book will provide you with some new ideas to address current issues you might be facing. For those who are recently diagnosed or who are still seeking answers to this strange ailment, we hope this book will serve as a useful reference guide as you begin your journey through life with SD. For friends, family members, or co-workers of those with SD, we hope this book will help you to better understand the plight of people dealing with SD.

Author Karen Feeley has been living with SD since 1997 and has been an active member of the NSDA since 2001.


Emily Lim finds her Voice through Writing

More...

Congratulations to NSDA Member Emily Lim who recently published a new children's book entitled The Prince and Pauper Bear. Emily shared, "This story was inspired by my personal struggles of coping with Spasmodic Dysphonia for the past nine years."

The Prince Bear and Pauper Bear is the first story I have ever written. There are parts of me in the wo main characters. Prince Bear was me before I was stricken with the condition, while Pauper Bear resembles me after. Like me, Pauper Bear discovers goodness and kindness from different people and is given a second chance," she said.

Wanting to repay the support and kindness she has received, Emily decided to pay it forward. She has generously donated a limited quantity of her book to the NSDA with proceeds supporting the organization. Click here to order it.

Safety Issues Regarding Botulinum Toxin

More...

NSDA is aware of recent publicity generated by an FDA report and a subsequent petition from an organization called Public Citizen.

We have asked Andy Blitzer, M.D. on our NSDA Medical Advisory Board for his comments from a perspective of how this petition relates to the use of botulinum toxin as a treatment for spasmodic dysphonia. Here is what he had to say:

"The review referred to was done for all botulinum toxins (not just Botox). It was not started because of some new complications just recognized, nor a series of bad results.

The side effects and risk factors mentioned are consistent with the current U.S. labeling for BOTOX(R) and BOTOX(R) Cosmetic approved by the FDA.

Furthermore, as part of its effort to provide critical guidance to physicians and the public on the effects and use of drugs, the FDA recently completed a routine safety report on BOTOX(R) in which it reviewed serious adverse events reported to the FDA through the MedWatch system over the course of more than a decade of BOTOX(R) use, and non-serious adverse events over a year. The FDA's report reaffirmed the safety profile of BOTOX(R), noting that the majority of adverse events reviewed were included in the labeling for BOTOX(R) and BOTOX(R) Cosmetic. Of the few reported adverse events that are not included in the product labeling, none indicated a pattern suggesting a common causal relationship to BOTOX(R) and BOTOX(R) Cosmetic.

The FDA's report is consistent with information received by Allergan's own stringent post-marketing pharmacovigilance program and with our understanding of the safety profile of BOTOX(R) and BOTOX(R) Cosmetic as demonstrated in clinical trials involving more than 10,000 patients, and in clinical practice.

In addition, I think your members might want to know that this is now my 25th year of injecting all sorts of neurologic conditions with Botox (including SD). We have injected literally thousands of people with very few adverse events. This is a better safety profile than most of the other drugs that we commonly use. I hope this information helps your membership."

(From Dr Andrew Blitzer, MD, DDS
Professor of Clinical Otolaryngology
Columbia University
Director, NY Center for Voice and Swallowing Disorders

NSDA recommends that patients follow the usual practice of making a personal decision based on a discussion of their individual case and the related medical treatment with their own doctor.