New Children's Book on SD
Explaining spasmodic dysphonia to children can be difficult. They may not understand why their parent or grandparent's voice suddenly sounds different. Greater Dayton, OH Spasmodic Dysphonia Support Group Leader, Mary Ann Keller, took on this challenge. "My Dad had Spasmodic Dysphonia," tells the story of a young boy learning about the changes in his dad's voice and the impact on their family. More...
Mary Ann's nephew, Matt Klaber, illustrated the book. It is available to order by clicking here. All the proceeds support the NSDA.
Dilbert Creator Scott Adams Shares His Experience with Spasmodic Dysphonia
For more than 25 years, the cartoon Dilbert has amused and entertained audiences thanks to its creator Scott Adams. “After working at Crocker National Bank, my first corporate job, I assumed that all the craziness going on there could not be going on anywhere else,” he said. It wasn’t until he moved to Pacific Bell that he realized everything looked the same. That freed him to create the character Dilbert with the correct assumption that his experience was common to other people. After that, the cubicle-bound engineer working for an unreasonable boss at a nameless company was born. Scott recently published a new book entitled, How to Fail at Almost Everything and Still Win Big: Kind of the Story of My Life. The larger context of the book is how to embrace and learn from failures in order to achieve success, but his struggle with spasmodic dysphonia is the narrative vehicle that brings it together in the book. Scott shared his experience with SD in an interview with the National Spasmodic Dysphonia Association. We are also excited to announce that Scott Adams is an Honorary Board member of the NSDA. In this position, Scott will be extremely helpful in our mission to raise awareness about spasmodic dysphonia. More...
Scott was used to losing his voice. At least once a year, he would have a bout with allergies and laryngitis resulting in this, but in 2005 something was different. It had been over a month, and his voice still had not returned. Concerned, he scheduled an appointment with his doctor and this turned into visits to multiple doctors, MRI scans, treatment for acid reflux and strep throat, and finally a referral to a psychologist. After all, wasn’t it a little “crazy” that he could talk fine to his cat and to himself? The recommendation was valium to relax him, but Scott passed on that option and kept looking. He shared,"That felt wrong. I was used to speaking to large groups, and I didn't feel any more nervous in front of people."
Eventually Scott made the connection to his voice problem with his past issue with his hand, a focal dystonia called writers cramp. After typing in vocal dystonia into Google and hearing "his" voice in a video, he discovered that his problem had a name, spasmodic dysphonia. When he was referred to a doctor who specialized in spasmodic dysphonia, his diagnosis was confirmed within seconds of speaking. Scott tried botulinum toxin injections for several sessions but the results were limited. He later learned that one of his vocal cords was out of alignment which could have affected the response. For him though, there were too many variables with the injections, including dosage and placement. Scott was hoping to find a long-term solution to his spasmodic dysphonia and did not want the symptoms to be masked by the impact of the injections. That set him on a varied path of treatments including acupuncture, diet, certain types of cough syrup, relaxation, speech therapy, but still no definite relief of the SD symptoms.
During this time Scott found an outlet by writing his blog. He said, “The blog became incredibly important to me because you don’t feel connected to the world just because you are listening. You feel connected when you know you have been heard. Since I couldn’t do that in person, the interaction in the blog became hugely satisfying and was important to my survival. I was being understood so that kept my spirits up.” Three years later Google proved most effective again in his search for answers. His alerts had been set to receive updates on “spasmodic dysphonia” and through one, he learned about a surgery in Japan. After discussing this procedure with his doctors, he was led to an option much closer to home. An appointment was scheduled with Dr. Gerald Berke, Professor and Chair in the Department of Head and Neck Surgery at the University of California in Los Angeles (UCLA).
Scott jokes that it took about three seconds for Dr. Berke to confirm his SD diagnosis after he said “he-llo.” This appointment offered a new treatment option, a surgical technique called Selective Laryngeal Adductor Denervation Reinnervation (SLAD-R). Dr. Berke, who pioneered this procedure, laid out the risks very carefully. Worthwhile improvement in voice had been seen in about 85% of the cases, but he warned that 15% did not benefit. That 15% ran the risk of not being a candidate for future treatments. Scott shared, “While that was a scary possibility, the quality of my life was so affected by my inability to speak. I had to take this chance because the alternative was a life I didn’t want.” His surgery was scheduled.
A month later, Scott underwent the operation. “The interesting aspect of this procedure is that it doesn’t penetrate to the inner structure of your throat. He is not ‘playing’ with your vocal cords, but rather rewiring the circuitry of the nerves in the front of the neck,” Scott said. It would take about three and half months until the new nerves regenerated and the voice came back. Scott was trying to plan his follow-up visits and was told, there were none. It either works or it doesn’t, which he found amusing.
The recovery was not easy. Scott said he dreaded feeling hungry because his swallowing was affected for months. He tried to speak during those months, but his brain was still not connecting with his vocal cords. All he could do was whisper. But he was not discouraged, because he kept focusing on the final outcome. And then, three and half months after the surgery, almost to the day, his wife, Shelly said something to him, and he spoke back. In disbelief, she said “You just talked.” And while weak and breathy, it was actually speech.
In the months that followed, his voice steadily improved. Scott shared, “My affirmation at the time was ‘I will speak perfectly’ if such a thing even exists. I had a weak nasally voice before I ever got spasmodic dysphonia, but after the surgery, the quality of my voice was substantially better than before SD.” Dr. Berke hypothesized that he might have had “latent” spasmodic dysphonia all his life, but ended up with a far more functional voice than ever before. Scott concluded, “And life has never been more enjoyable or satisfying. But one of my big motivations for writing this book was that I wrote it, in part, for the person in the middle of nowhere who has lost his voice to spasmodic dysphonia.”
REAL LIFE: Spasmodic Dysphonia and Unemployment
Each person's experience with spasmodic dysphonia is different, yet there are common threads that can connect one another. We have a new feature called "Real Life" written from the point of view of the author. More...
Our first feature is by Susan Reagan (pictured left) talking about unemployment and spasmodic dysphonia. Susan shared, "The process of self-discovery has taken such a long time for me to be truly optimistic and no longer bitter." Read Susan's article on REAL LIFE: Spasmodic Dysphonia and Unemployment by clicking here.
More Funding Available for SD/Dystonia Research
The appropriations bill passed recently by Congress included dystonia on the list of eligible conditions for the Department of Defense (DOD) Peer Review Medical Research Program AND this program received an increase of $150 million over the FY13 level! This increase in funding will allow for more research to be funded and/or for research to be funded at higher levels. It demonstrates the power of advocacy. More...
We also want to recognize and express our appreciation to the late Honorable Bill Young, Congressman from Florida. Congressman Young had been a champion of dystonia and his support of the addition of dystonia to the PRMRP list was so important this year. Remember to mark your calendars for April 8 and 9 for Advocacy Day this year.