When did you first notice symptoms?
I've sung in choirs since I was young and belonged to my college choir. In my adult life, I joined a church choir and was a member of a local chorus. About 20 years ago, I remember saying I couldn't sing anymore. I couldn't project my voice or hold a note for very long. It was very frustrating.
How were you diagnosed?
I mentioned my singing problems to my primary care doctor who referred me to a neurologist who specialized in vocal cord problems. He did a physical then talked to me to find out what I could and couldn't do with my voice. I couldn't speak loudly or shout. Sometimes I needed to shout at my children, and I couldn't.
What did your neurologist tell you about the disorder?
He explained that spasmodic dysphonia is a movement disorder that affects the muscles of the vocal cord, causing them to spasm, which makes my voice break up or sound whispery or drop completely.
What sort of treatment did your neurologist prescribe?
He prescribed Botox injections every three months. I would go into New York City for the treatment. It wasn't more painful than a needle prick. The needle had to be in the exact right place so the surgeon would feel around to get it into the muscle that goes to the vocal cord. The procedure took 10 to 15 minutes. I remember going home and trying to talk to Paul, my husband, and I could only whisper. That lasted about a day or two. I still couldn't sing or shout but I could talk almost normally.
Are you still getting Botox injections?
I went every three months for about five or six years. Eventually, it wasn't doing much good because there was quite a bit of tremor in my voice. [People with spasmodic dysphonia are 25 percent more likely to have a vocal tremor as the general population.] They said it wasn't really working or helpful so I discontinued the treatments. Now I don't take any drugs or other medication or therapies.
Does your voice bother you or prevent you from speaking?
I don't notice I have stops in my speech. I think of myself as talking normally. I don't even realize it comes out differently. I've never been depressed about it, and as a psychiatrist who saw mostly patients with schizophrenia I know about depression. Usually, my husband can understand me, but sometimes he has difficulty. But married couples have difficulty understanding each other, and it isn't always related to speech!