News Archive

NSDA Blog: Dystonia Advocacy Days

On March 19 and 20, members of the NSDA will again be in Washington D.C. representing spasmodic dystonia as part of the Dystonia Advocacy Network (DAN).  This is a grassroots group that “represents a single, powerful voice on legislative and public policy issues which impact the dystonia community.”  They will visit Capitol Hill and connect with Senators and House Representatives about policies that impact individuals and families of those with dystonia.  This event is the dystonia community’s opportunity to make its collective voice heard throughout the halls of Congress and it is always well attended by individuals with all forms of dystonia.  More...

The DAN continuously works to adopt and advance a legislative agenda which raises awareness of dystonia, educates policymakers about dystonia, addresses patient care issues, and moves research forward.  Of primary importance is funding the important research of the National Institute of Health (NIH).  They have helped researchers make immense progress on spasmodic dysphonia in the past few years and it is important that NSDA contribute our voice and the voice of our members to Advocacy Day because we all want a cure.  Advocacy has become part and parcel of how the government makes informed decisions. With tax cuts and changes impacting the 2018 tax year, it is important that policymakers are informed of the impact that they will have on nonprofits and the team representing DAN will insure that dystonias stay relevant.

NSDA Blog: Advice from CEOs with SD-Embrace It!

Recently, we interviewed two CEOs with SD, Kevin Hancock from Hancock Lumber and Jaime Schmidt from Schmidt Naturals.  In both interviews, the focus was on how SD has impacted their individual leadership styles.  We asked the question, “what advice would you give to someone living with SD?”  We were was surprised to get the same answer from both Schmidt and Hancock…”Embrace your SD”More...

We can all understand the expression, but what does it really mean?  I often use a thesaurus to really understand the intrinsic meaning of a word so here’s some of the other words that can be used in place of embrace:  hug, include, incorporate, accept, welcome, support, adopt, enfold, comprise, take on.  It’s interesting that those are some of the same concepts that I would also include in the concept of self-love.


I am a realist. The unexpected diagnosis of SD probably threw your life out of balance. It likely impacted you emotionally, professionally, and in your personal relationships. There’s no doubt that you felt at least once or twice or a million times, that things were worse for you. But I have noticed a theme from the folks with SD who participate and contribute to the Association (NSDA), they all express some sort of acceptance of their SD. And that acceptance forces them to think differently about the events and circumstances of their lives. Schmidt admits that she plans business travel and speaking events around her Botox® treatments.  She didn’t quit doing speaking engagements, but she has had to adapt.   

So as usual, I went to Google for help on this topic. Here is some advice from a few of the over 4 million Google results on self-love with a disability.

·         Find and make great friends. There is a saying, “friends are the family you choose.” The good ones will offer support and accept you just the way you are.

·         Focus on your strengths not your weaknesses. Don’t dwell on what you cannot do, think about what you can and enjoy doing, then do it more often. Imagine the confidence you’ll build when you’re repeatedly successful.

·         Don’t measure yourself against anything else, not even YOU before YOU had SD. The problem with measurements is that there’s always some that fall below the baseline. Don’t compare, it’s your normal that all that matters.

·         Don’t be so hard on yourself. You are already an extremely strong person. You solve problems most people cannot, you know how to adapt, you know how to live with SD.

·         Connect with people. People will be curious about your voice, even if they do not say anything. Once you tell them about your disorder, they will admire you, listen more closely when you speak, and whether you realize it or not, you will become an inspiration. 

·         Find a supportive community. There are support groups with people who have SD, just like you. Find one on the NSDA website.

Embracing something can lead to growth, helping you experience life in a new way, with a new perspective, that can transform your life in ways you never thought possible. And Hancock admits, “In losing a piece of myself, I found a better me”.






Benefit Concert for Spasmodic Dysphonia

Our Savior's Lutheran Church, in Sun Prairie, WI, will host a benefit concert at 3 p.m. on Sunday, Feb. 18, to benefit the National Spasmodic Dysphonia Association (NSDA).  The concert is part of a series of fundraising events featuring Warren Bandel and the Classic Brass Quintet.  Bandel starting having symptoms back in sixth grade.  In high school he received a diagnosis of spasmodic dysphonia (SD a neurological disorder that impacts the larynx and affects a persons speech.  While the disorder is not life threatening it is life altering and there are approximately 50,000 who suffer from it. More...

Fast forward many years and Warren now serves as a board member for the NSDA and knew he wanted to do more to help find a cure.  Using his love of music to make a difference, he held his first benefit concert in 2015.  He has since added more concerts including the one on Sunday and has other scheduled in Rochester and Mankato, MN.

The first for 2018, will be held Sunday, Feb 18 at 3:00 at Our Savior Lutheran Church, 550 Lincoln Dr, Sun Prairie, WI 53590. Admission is free, but a freewill offering will be accepted to benefit NSDA.  If you're nearby, we hope to see you there.


NSDA Blog: 30 Years of Spasmodic Dysphonia Treatment and Research

Drs. Andrew Blitzer, Mitchell F. Brin, Kristina Simonyan, Laurie Ozelius, and Steven J. Frucht (all pictured above), provided a review of over 30 years of experience and research studies involving patients with laryngeal dystonia (LD). This paper, recently published in The Laryngoscope, summarized what has been learned and why it could be important to the diagnosis, treatment and maybe a future where LD is controlled. More...

Included is what has been learned from over 25,000 botulinum toxin injections for the treatment of LD symptoms, what we have learned from brain imaging, and an update the sodium oxybate study. Dr. Blitzer, as one of the pioneers of treating spasmodic dysphonia with botulinum toxin, shared some of his insights in the summary. Thank you to all of the contributors for their dedication to gaining more understanding about this complex voice disorder! Click here to read the summary. Click here to read the full paper.

NSDA Blog: My Story: Carolyn Bolz’s first Toastmaster Meeting

In our January 5 blog, we wrote about resolution making and using this time to work on some aspect of your life impacted by SD. I ran across this article from a couple of years ago in which Carolyn Bolz recounts the first day she attended a Toastmasters meeting. Toastmasters are an international organization with over 350,000 members trying to improve their speaking and leadership skills. They offer a supportive learn-by-doing environment that allows people to achieve their goals at their own pace. Every Toastmaster journey begins with a single speech. This is the story of Carolyn’s first Toastmaster speech with SD. More...

Have you ever done something that made your heart race and your palms sweat? That’s how I felt when I attended my first Toastmasters meeting. Since I have different forms of dystonia, including spasmodic dysphonia, I was worried about how the group members would react, especially if I ended up giving a speech. When I went to my first Toastmasters meeting, I drove halfway there, made a U-turn, and came back home. Facing a roomful of strangers and possibly having them stare or make comments about my dystonia symptoms caused me to feel anxious and self-conscious. The following week, I decided to try again.

This time I was able to drive to the real estate office where the Toastmasters meeting was held. I walked into the small auditorium at the back of the building, and then took a seat. A dozen men and women were milling around, talking with one another. All I knew about Toastmasters was that it was an organization where members gave speeches. Since I am self-employed and work at home, it seemed like a good place for me to socialize for an hour each Thursday afternoon. I also was curious about the speeches. Before my SD and other dystonia symptoms had worsened, I worked as an elementary school teacher and was used to talking in front of a group.

When the Toastmasters meeting began, the club president introduced the members who had assignments that week. This included the Timer, the “Ah” counter (who kept track of the number of “ah”s and “um”s in each speech), evaluators, and others. I was mesmerized as I listened to the first speaker give an introductory talk about herself. As she walked to the podium and again after she finished her speech, everyone applauded. The member who evaluated her presentation was kind and encouraging.

“Does anyone else want to speak?” the club president asked. “Our other scheduled speakers weren’t able to come today so we have plenty of time.” Without thinking, my hand shot up. “May I give an introductory speech?” I asked in my raspy voice. “This is my first time at a Toastmasters meeting, but I’d like to participate if it’s okay.” The President looked surprised, but nodded. I walked up front and began telling about myself. I enjoyed sharing with the group even though my head started bobbing, my right arm trembled, and my voice became squeaky and very weak. I paused a moment, took a deep breath, and then finished my short speech. On the way back to my seat, I appreciated the audience’s applause. I could tell by the smiles on the members’ faces that I had done well. The club President remarked how impressed he was that I had given my first speech without any preparation or notes.

At the end of the meeting, the members voted for Best Speaker, Best Table Topic (impromptu speech), and Best Evaluator. “Carolyn, you won the blue ribbon for today’s Best Speaker!” the president announced. I gasped as everyone applauded. I felt grateful that the club members had been able to look past my unusual voice, tremors, and bobbing head to concentrate on my speech instead. After the meeting, I joined Toastmasters. I was happy that I had not let SD and my other forms of dystonia keep me from taking a chance and trying something new. In fact, I went on to represent my club at the district level and won the 1st place trophy for best Table Topic (impromptu speech).

NSDA Blog: Patient-directed manual therapy may minimize symptoms of SD

Manual therapy and its potential benefits have not historically been used on disorders thought to be influenced by soft tissue tightness, neural tension, and responses to changes in autonomic tone. Myofascial release (MFR) however has been shown to be a safe, hands-on technique that involves applying gentle and sustained pressure to help reduce symptoms of dysphonias.   More...

In the case of SD (spasmodic dysphonia), the practitioner relies on the patient to help direct the treatment by applying slow and gentle palpitations throughout the neck region, attempting to locate areas that replicate familiar aspects of the patient’s own SD symptoms. In essence, they are trying to replicate the symptoms without the patient ever having to speak, in an attempt to pinpoint the area in the neck that needs treatment. Once identified, the practitioner targets that area with manual therapy to help alleviate symptoms over time.

MFR therapy is a slower and less abrupt form of intervention and should not be painful. The treatment does not work for everyone. However, if during the evaluation, the initial treatment shows promise, the patient should experience symptom improvement within 3 sessions. Once the evaluation is complete and treatment has started, the patient is provided with stretching that they can do at home to augment the sessions with the therapist. These stretches are intended to be performed as a part of ongoing treatment program by a trained and licensed manual therapist.

The great news is that a growing number of practitioners have received MFR training for the evaluation and treatment of SD and related dysphonia conditions. (A list of over 200 trained professionals can be found here.) Each person suffering with SD is different and the appropriate treatment option is as individualized as their symptoms.

That’s why it’s important that the NSDA continue to deliver messages of hope and treatment alternatives. To get a complete list of SD treatment options, check out our website.


NSDA Blog: Creating Your Best Year Ever

Living with Spasmodic Dysphonia (SD) can impact all areas of your life.  We would like to encourage you to use this new year as a new beginning.  By assessing each area of your life and creating a plan to impact each area can help create a more positive outlook on living with SD.  That’s why we are sharing a simple worksheet on building a new year’s resolution that centers around enhancing your life as it relates to SD. Download it here.   More...

But let’s be honest.  New year’s resolutions often go to the wayside once life gets in the way.  In fact, one stat says that says that 80% of those who make a resolution will have given up by the first week of February.  Since we want you to have a great 2018, we decided to scour the Internet for advice on how to make and keep those resolutions.

Billionaire Richard Branson writes down his resolutions.  Whether on paper or in your phone, the act of documenting a resolution helps it stick better then thinking it.  Include short and longer term goals and then check them off when completed.  It’s important to celebrate the little wins and feel that sense of accomplishment.

Tony Robbins, a business and life coach, goes a step further. If you want a resolution to stick, you need to have a clear and concise plan.  It needs to include what you want to accomplish, why you want to do it, how it will be accomplished, and tools and resources that you need to make it all happen. It’s also important to review the goal every day to enhance your spirit of renewal.  

According to Popular Science Magazine, make sure your goals for 2018 are concrete enough that they can be broken down into smaller bite size pieces.   It is hard to feel accomplished when a goal is abstract.  Also, pair your new goals to something that happens automatically each day. Like maybe you do voice exercises every day while in the shower.  The act of showering every day is already a habit, so connecting the voice exercises to something you’re already in the habit of doing will help it stick.  And don’t forget to connect the completion that new daily habit with a sense of accomplishment.   Celebrate that sense of accomplishment.

Former Google career coach, Jenny Blake, offers a method of writing down your goals for the year and really pinpointing what’s important.  Check out this quick video.

According to the New York Post, resolutions present an opportunity for self-improvement. Try to set a tough goal, but provide yourself with the ability to slip up without penalty. This means that in the event that you go off course, you can get back on track and not be discouraged by the occasional slipup.

And finally, here’s some advice from us.  No matter what happens to your resolutions, remember, you’re wonderful just the way you are.

Reaching New Audible Heights: Scott Adams

In our most recent issue of our newsletter, Our Voice, we featured an article about Dilbert creator, Scott Adams.  In it, he talked about his desire to record the audio version of his new book, Win Bigly: Persuasion in a World Where Facts Don’t Matter. Like so many with spasmodic dysphonia, Scott lives with SD and the impact it has on his voice. Although Adams experienced great improvement in his symptoms after his Selective Denervation-Reinnervation surgery in 2008, he still struggled with the anxiety of relying on his voice and demanding so much of it.   More...

Scott did not have to narrate his book, after all, there are many professionals who could have done the audio just fine.  But let’s face it, performing it himself was more desirable for the marketability of the book. His publisher believed that it was worth a try to have the book read by Scott, even if they had to scrap it halfway through. So he agreed to try, and, like so many with SD, experienced the concern that goes with having to communicate verbally. In the end, Scott completed the audio book within a schedule of four hours of continuous reading per day over the course of four days. While he felt fatigue in his voice after each recording session, it recovered overnight.

Scott's message is one of hope for those living with SD. He lives with the disorder, got a treatment that worked for him, and tackled a major achievement. It’s like a Rocky movie for SD. For the full story, check out the article in the newsletter on page 3 by clicking here

Read the latest issue of "Our Voice"

The latest issue of the NSDA newsletter, Our Voice, is in the mail, but we are so excited about this 28-page issue that you can READ IT NOW! This newsletter is packed with updates on research, treatment, stories of success, and highlights of the NSDA Support Network. This is our gift to you for your continued support of the NSDA. Share it with your family and friends, too!  More...

New Awareness Materials

New Awareness Materials

The NSDA is excited to introduce some new tools help raise awareness about spasmodic dysphonia. A new button, awareness cards, and visor card for your car are available. Click here to order the new materials!    More...

This button is a creative way to let others know about the spasmodic dysphonia. It measures 1.75" x 2.75" and was designed by Andrea Butteworth who has SD. Andrea shared that the goal of these buttons is help many feel more confident and open the door for conversations about our unique vocal disability. Click here to read Andrea's story.

Explaining that you have a voice disorder can help make a situation less stressful. Three new business size cards provide an easy way explain to others about spasmodic dysphonia and raise awareness. These are designed to keep in your wallet and show people to help explain why you might be having difficulty talking. For cards to give to people to explain what spasmodic dysphonia is, order our 3-fold card.

This visor card (5.5” x 8.5”) will help explain what spasmodic dysphonia is, especially in stressful situations. Special thanks to Deb Lindsey who suggested this idea to the NSDA.

Click here to order the new materials!