NATIONAL SPASMODIC DYSPHONIA SYMPOSIUM APRIL 2012 in PHOENIX: REFLECTIONS

Palm trees towering above Old Mill Road in Phoenix AZ

On April 28th, I attended for the first time the National Spasmodic Dysphonia Association's (NSDA) symposium in Phoenix, Arizona.  I arrived a day earlier on a standby ticket, which left a lot of spare change in my pocket.  Suffice it to say, I was the last person to get on board the early morning flight from Toronto Pearson International Airport.  I couldn't contain my excitement at the thought of all the knowledge I would pick up on SD at the event.  I've had adductor spasmodic dysphonia (an incurable voice disorder, symptoms of which include a strained, squeezed voice that takes a lot of effort to push out) for four years now and also developed muscle tension dysphonia as a result of my body trying to compensate for the SD.  I was thrilled at the opportunity of meeting others who were struggling with SD too and was curious to find out what treatments worked for them and how they had adapted to the symptoms of the disorder. 

The symposium was scheduled for Saturday, but there was a meet 'n greet Friday evening.  The mic was passed around in the conference room of the Holiday Inn as delegates and organizers welcomed all of us and shared some of their personal stories about SD and their participation and involvement in the NSDA.  All but three of us were American.  I and one other participant and her husband were the only ones from Canada. There were quite a number of elderly folks in the crowd.  One lady I spoke with was particularly sweet.  Her warmth and kindness was immediately felt. 

The conference got underway at 10 a.m. the next day.  Charlie Reavis, NSDA president, opened the symposium with some inspiring words and promoted the main theme of this year's gathering: "we are more than the SD".  I liked his message.  Throughout the symposium, he was responsive to all the delegates, approachable, and kind.  He also had SD, but because of the belief he had in himself, he didn't allow SD to rule his life.  This was the message he wanted all the delegates to take away with them. 

Charlie Reavis, President of the NSDA, opens the symposium

The symposium continued with an informative lecture by Dr. Gerald Berke, who is the go-to treatment expert for people with SD.  Dr. Berke is known for conducting the Selective Laryngeal Adductor Denervation-Rennervation (SLAD-R) operation, which involves some nerve slicing and nerve connecting.  The nerves involved are the tiny ones that connect to the muscles responsible for AdSD (adductor spasmodic dysphonia).  According to the NSDA, more than 80 per cent of patients responded positively to the operation over the treatment's 15 year history.  Patients have reported that they have not experienced any of the breaks characteristic of AdSD and now live with a functioning voice.  The NSDA stated in its information brochure on surgical procedures that a small minority of patients returned to BTX (Botox) treatment after unsuccessful results with SLAD-R.  Unfortunately, SLAD-R doesn't work for those with abductor SD, characterized by a breathy voice that increases during speech. 

Dr. Gerald Berke, chairman of UCLA Department of Head and Neck Surgery in Los Angeles, developed the surgical treatment for SD called SLAD-R.  He is also a member of the NSDA Scientific Advisory Board.

Important points about our genes and SD were presented by Laurie Ozelius, Ph.D, also a member of the NSDA Scientific Advisory Board.  She said, SD can be genetic, but it was rare to find gene carriers.  However, one carrier can affect others in every generation.  There was a lot of scientific language in the presentation that I had to translate in layperson's terms in my mind.  Still, it was informative and important for us to be aware of the research being done in this area. 

Laurie Ozelius, Ph.D., associate professor in genetics and genome sciences and an associate prof in neurology at Mount Sinai School of Medicine in New York, speaks to delegates about DNA and SD

Christy Ludlow, Ph.D., professor of communication sciences and disorders and director of the Laboratory of Neural Bases of Communication and Swallowing at James Madison University in Virginia, spoke to delegates about the variety of research studies on SD.  She addressed many of the observations we as patients have made over the course of our experience with SD.  Some of these observations included development of social anxiety and depression.  She touched on two of the observations I had made about speech feedback and accents.  Many of the research studies Ms. Ludlow mentioned in her talk can be found at this site: http://report.nih.gov/.

Christy Ludlow, Ph.D., Director of the NSDA Scientific Advisory Board, gives delegates at the symposium the latest research updates

What I've noticed is that the voice functions without breaks as soon as I can hear my voice coming back to me through a monitor as I speak with a mic.  Also, when I put on a fake British or Indian accent for instance (it could be other accents too), the breaks and strain disappear.  Although I can maintain a strain-free voice when I speak with a mic and a monitor (especially when giving heartfelt speeches!), I can't do the same with the fake accents.  It takes a lot of energy to maintain the voice and pretty soon, the cracks and strains reappear.

I have found the same to be true with singing.  Many people with SD have said that singing evens out the voice possibly due to the fact that we're using a different part of the brain.  When I use my head voice, the SD disappears, but the more I sing in that moment, the harder it is to maintain that smoothness of tone because the SD eventually creeps back into the voice.  I feel winded afterwards and completely out of breath.  This is where deep-breathing yoga might be helpful. 

A cashier at the nearby nutrition shop on my street recommended kripalu yoga, the yoga of consciousness that helps release emotional and spiritual blockages while learning different positions.  I think there is still a lot in me that requires some resolution.  Addressing these issues will not magically make my old voice reappear.  I harbour no delusions in that regard, but I do believe I can come to a place of acceptance once I make an effort to heal those old wounds and learn to trust where I'm heading. 

For people who want to be more sensitive to the needs of SD patients, it's important to point out that it is a neurological disorder and can not be cured by eating certain foods, drinking herbal teas, exercising, yoga, relaxing, breathing deeply, losing weight, etc.  I've had so many people tell me that I should just try to relax more, but they have no idea that to tell me so adds further stress and pressure to make my voice sound "better".  The symptoms will come and go as they like no matter what I do.  However, adopting measures for healthy voice production in general such as decreasing sugar and caffeine consumption and drinking more water to keep the voice hydrated are ways to maintain the body's capacity to adapt to the fluctuations in the voice.  This has worked for me.  I find the less sugar I eat in a day (I have a verrrrry sweet tooth!), the stronger my voice feels.  PLEASE NOTE: there is no change in the SD, but the overall positive energy (via good nutrition and a good attitude!) in my body allows me to speak without tiring out too fast. 

After Ms. Ludlow's lecture, we broke for lunch.  The delegates then had further opportunity to speak with one another and find out what treatments worked and didn't work.  Most of them were on the BTX treatment.  Some shared their hits and misses with Botox, for instance, when the doc administering the shot injected a bit too much leaving the patient with a breathy, whispery tone for weeks.  Dr. Berke said, laryngologists should know what dosage is right for each patient.  Some people require more, some less.  It takes time for the body to figure it out.  BTX treatment involves either unilateral or bilateral injections right underneath the thyroid cartilage in the throat.  Dr. Berke said that if patients were happy with the results of their treatment regime, they should stick to it. 

I haven't followed this route due to many reasons, one of which is that I'd have to take a few weeks off from school and work to wait it out until the breathiness after the initial shot of Botox disappears. In short, I won't have a voice for a while.  Another reason and the most important for me is that I need to allow my body to adapt to this change in voice instead of giving it the standard band-aid solution.  As I wrote before, I want to come to an acceptance and understanding of this new voice and give my body opportunities to learn the way it works and make the necessary adjustments.  Maybe later, I might take the medical route, but for now, I'm happy traveling the path of acceptance and challenge.  I'm a journalism student, a community support worker, and a volunteer choir member and I've been able to do all of that work with this voice.  Yes, I've had many challenges and faced some negativity from others, but I find people stop hearing the voice disorder once they hear the belief and the confidence in my words. 

I am in no way criticizing those who have chosen medical treatments.  We must all find what works best for our unique selves and also know when the time is right for medical intervention, and for many people it has been either the BTX treatment or surgery.  I applaud them for having the courage to follow through and choose opportunities to better their circumstances. 

The symposium concluded with husband-and-wife duo, Thomas and Caroline Hofmann, who re-energized all of us with steps to improve our attitude and outlook as SD patients.  They emphasized that all events were neutral and that the way we thought of these events as either good or bad determined our thoughts and feelings, which impacted our behaviour.  They recommended ways to change our lives to eliminate or modify voice usage such as changing our jobs and getting vocational rehabilitation, and using other strategies to assist in voice production: voice amplification devices, educating others and enlisting their help, or using email/texting more frequently to communicate.

Thomas Hofmann, Ph.D., chair of the psychology program at Hodges University in Fort Myers, Florida, and Dr. Caroline Hofmann give an Oprah-esque presentation on improving the quality of our lives with the right steps and the right attitude

Frank Prochaska, Ph.D., the chair of management-emeritus at Colorado Technical University, wrapped it all up when he said, "you can't pursue success. It ensues" as a result of what you choose to focus on along your life path.  He said to avoid hearing ourselves and instead cultivate the notion of seeing ourselves and what we have the potential to achieve.  Very nice ending to an amazing series of informative and inspiring lectures given by people who are committed to the cause. 

Frank Prochaska, Ph.D., advises delegates to "try to fall off the tightrope" in a talk about paradoxical intentions

The symposium finale included a delicious dinner where the remaining delegates and NSDA staff and guest speakers shared their reflections on the symposium and exchanged contact information to stay connected.  I met so many lovely people, all passionately working to raise awareness about SD
and offering one another great support! I feel blessed and privileged to have had the opportunity to meet the other delegates and the organizers of the symposium.  I feel empowered to continue the work to inform and educate myself and others with the knowledge gained from this positive and transformative experience. 

Thanks to the NSDA for existing and organizing a great symposium, and thanks to all the wonderful people I met who shared their personal triumphs, treasures (one of the delegates gave me one of her published works for free called "Everybody's Woman", by Pat Hill, Avid Readers Publishing Group 2012), and also some of the tragedies they have struggled with. 

For more information on the NSDA, information about SD, and upcoming events, please visit: http://www.dysphonia.org/

The sheer beauty and strength of the human spirit continue to defy all odds.  Never give up.  Keep your chin up.  And speak up in ways that help you get your message across.  There are no limits.

That's me enjoying the sights and sounds of Phoenix after the symposium

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