News Archive

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! 

2017 Symposium Summary

Over 100 people attended the 2017 NSDA Symposium in Nashville, TN, on Saturday, May 6, 2017. On Friday night, attendees were greeted by the bluesy sound of a slide guitar played by NSDA Support Group Leader Wendy Garrison. That was followed by the sharing of personal stories at the Welcome Party.  Saturday included presentations from SD medical experts, utilizing mindfulness as a tool, and several breakout sessions which focused on living with SD, the impact of SD on family and friends, and abductor SD.    More...

Kevin is the President of Hancock Lumber Company and was diagnosed with spasmodic dysphonia in 2010. Five years after, he published his book "Not for Sale: Finding Center in the Land of Crazy Horse" about his personal experience with SD and how this seeming liability turned out to be a blessing for him. Kevin sold copies of his book at the Symposium with the proceed going to the NSDA. Kevin's book can be ordered hereClick here to read the Symposium summary, and be sure to view the presentations on the NSDA's YouTube channel at www.youtube.com/user/NSDA300. Special thanks to NSDA volunteer Andy Harness for recording the meeting! 

Top left: Gwendolyn Sims Davis, Fred Hosier, Dennis Delgado, Jan Lant, Stephie Mendel, and David Barton. Top right: Group photos of Symposium attendees. Bottom Left: President Charlie Reavis presents Keynote Speaker Kevin Hancock with an award. Bottom center: Dr. Teresa Kimberley, SLP Melissa Kirby, Dr. C. Gaelyn Garret, Charlie Reavis, and Dr. Gerald Berke. Bottom right: Wendy Garrison shares her music at the Friday Welcome Party.


Warren Bandel joins the Board

We are excited to welcome Warren Bandel to the NSDA Board. Having lived with spasmodic dysphonia since he was in 6th grade, Warren is dedicated to the Mission of the NSDA. He has served as an Area Contact Person since the mid-90s. In 2011, Warren attended his first NSDA Symposium and Leadership Day in Orlando, FL. Inspired by the personal stories and the positive experience, Warren's motivation to do more grew.    More...

Then in 2015, Warren organized his first NSDA Benefit Concert in Rochester, MN. This annual event has continued to grow and even travel, with a concert in Mankato, MN. Warren hopes to expand fund-raising for the organization in his new role on the Board. Click here to read more about Warren.

SD Career Corner

Professionally, Dorothy Tannahill-Moran is known as the "Introvert Whisperer," helps people to find career success by providing unique, actionable career advice. Dorothy shares her professional advice but with a twist of her personal understanding of having spasmodic dysphonia." Click here to read her article, "When Your Voice Creates a Roadblock to your Career; Find Another Path. More...

Dorothy also has had spasmodic dysphonia for about 20 years, first noticing it when she was making a presentation to her CEO. "I wasn't nervous but my voice had a definite "warble" to it. It took another seven years for it to get to the point where I knew something was wrong. I guess I'm lucky and grateful that it never occurred to me to do anything differently because of my SD. I have viewed it as just another challenge life has thrown my way but I do acknowledge that for many people with SD, it is a life-altering journey." 

Personal Profile: Dr. Gary Lea

Dr. Gary Lea, a clinical psychologist, wrote about his personal experience with spasmodic dysphonia including treatment with botulinum toxin (Botox®) injections and his decision to have the SLAD-R (Selective Laryngeal Adductor Denervation-Reinnervation) procedure in 2007.  Read his full story by clicking here. More...

He shared, "My counselling clients would, at times, question my vocal spasms, and I would explain that I had a voice disorder, and that it was neither painful nor infectious. My clients seemed to find that explanation acceptable, it never became a big deal and I do not believe that I lost any clients because of it. On the contrary, I was able to draw parallels between my own voice problems and their psychological or medical difficulties, as a way of demonstrating that all of us, sooner or later, are given challenges in our lives that can either defeat us or provide opportunities for self-improvement." Read his full story by clicking here.