Diagnosis: Adductor Laryngeal Dystonia
Role: Bev was one of the initial research volunteers in Dr. Rita Patel’s research into the pathophysiology of hoarseness in voice disorders. Dr. Patel was a recipient of the 2008 New Investigators Research Grant and the 2010 New Century Scholars Research Grant.
Q: How does having Adductor Laryngeal Dystonia affect your ability to communicate?
Beverly: My voice breaks, and it’s difficult to be louder. My voice condition affected my job because I did a certain amount of public speaking. During my career, I spoke at various meetings, and there were some events where I was the emcee. Then, all of a sudden, I found myself afraid to open my mouth because I didn't know what was going to come out. I was always worried I might sound nervous, even if I wasn’t.
At first, I went to a physician and then I went to a therapist because I thought I was going crazy. The physician thought I was just depressed, and we tried a couple of rounds of different antidepressants and all that did was keep me flat. I had no personality. I tried therapy because I thought I was losing my confidence, and the therapy didn't help, in fact it depressed me more. So, I returned to my physician and told her, “I can't project my voice. It breaks.” I broke down in tears, I was so frustrated. Finally, it clicked, and she said let's go to an ENT. When the ENT said, ‘I think you've got spasmodic dysphonia,’ I thought “Oh wow, somebody has a word for what’s happening to me!” I was so relieved.
Q: What sort of obstacles do you face in communicating most effectively? How do these obstacles affect your quality of life?
Beverly: I couldn’t speak. If I did, I would start to sound nervous, even if I wasn’t, and then I would become nervous, and it would just make me not want to talk at all. Think of going to a busy restaurant with a quiet voice and projecting over all the noise. Even when I tried to participate in a conversation, I knew they couldn't hear me or didn’t even know when I was speaking. Eventually, I stopped trying and got left out of the conversations. And that, in turn, became depressing because I wasn’t engaged.
Q: How did you become connected to Rita Patel’s research?
Beverly: When I was in the ENT’s office, she introduced me to Rita and her research project. I had just set up a support group in Indiana, so it seemed it would be a mutually beneficial opportunity. I told Rita, “If you want me, I’m in,” and I think I was her first volunteer. I figured, whatever I can do to help. At first, I didn’t quite understand what she was doing with all of the scoping, but later I did. She's trying to find better assessments, so people can get diagnosed more quickly and not go through what I did.
Question: How do you hope this research will help other people with your diagnosis?
Beverly: Well, I hope it will help pave a way for quicker diagnosis. Every research project moves us closer to a cure. Right now, all we have is treatments. We can treat vocal disorders with Botox, which can be useful in making your voice better, but it wears off. You’ve got to be treated again and again, and even with the surgical procedures, there's no guarantee. But until we find the root cause in the brain, that’s all we have. Eventually, I'm hoping that we can treat all voice disorders in a similar fashion, but we must do the research to really find out where it's happening and why.
Question: What would you say to someone to encourage them to support this type of research?
Beverly: We all have to do our part if we're going to find answers; even if it's not in our lifetime, we have to be a part of trying. Besides donating our time, we also need to support research financially because that’s the best way to communicate about our voices.