For those of you that don’t know, I have had a voice problem called “Spasmodic Dysphonia” for the past 10 years. Back in 1998, when it first occurred, I went to several doctors and they could not help. So after 2001, I just decided to live with it.
With spasmodic dysphonia, the words don’t come out the way I intend them to. They tend to be broken and sometimes very “breathy” or almost silent. I know what I want to say, but can’t say the words in a complete sentence or very loud. When I open my mouth to speak, you never know what is going to come out, or if it is going to come out at all. It is very frustrating. Many times I don’t comment at all on things that I want to talk with people about. Sometimes my voice is almost normal. But many times I almost cannot speak at all. I never know what I am going to get.
One good side effect I have found. I have become a much better listener and I find that I don’t have to comment on every subject (somebody usually says what I wanted to say anyway).
About two years ago decided I would see if there had been any progress in solving my problem. I started to go back to a series of doctors to try to find something that would help. There is no cure, and only a very few people in the world have the problem. Less than 200,000 in the USA, >.02% of the population of the USA. There is not much research or interest in finding a cure, and not many doctors have ever treated a person with the problem.
Botox shots every 3-6 months seems to help some people, but I took one in 2001 and it did not help me at all. The shots have to be targeted to the correct spot in the voice box and the dose level must be correct. The doctors have no idea where to start. All they can do is “hit or miss” and try to get the dose correct. I only took one shot, it made me worse than before, and decided not to go back.
I retired from Entergy Operations Corp. in 2001, mainly because my voice hindered the job that I was doing. My job as the Lead Vibration Technical Specialist involved speaking to a lot of engineers and upper management on a daily basis.
I have decided to try it again, but the doctors want to determine if it will help this time or if it will be a waste of time. During the past 10 years, some medicines have been tried that help some of the suffers, but they don’t work very long and tend to lose all effectiveness after a few months. The Botox seems to be the best fix, and it must be given every 3-6 months. Only a few doctors give the shots. One, that I know of, in Baton Rouge, at Our Lady of the Lake “The Voice Center”. There was one in New Orleans before Katrina, but he moved to Mass. Most people from all over the state use to go to him.
During the past two years I have been to speech therapy three times, group therapy(still going), psychologist and psychiatrist, more than I can remember, at least 4 ENT’s, and several Neurologist, the latest being a “movement specialist”. Each one seems to know a little bit more about the problem and they all want to help. I am determine to find some help from someone.
I had to laugh at myself a few months ago. My new Cadillac CTS has “voice recognition” for several things. The system often get confused when I try to ask it to do something. I want an iPhone, but it has voice recognition and would be almost useless!
Speaking on the phone is almost as bad. Please don’t get upset when you don’t understand what I am trying to say, or I take a long time to finish a sentence. I want to say it normal as much as you want me to hurry up and finish.
I don’t deal with the drive through windows anymore. That just does not work for me when I have to shout at the speaker.
Trying to order a take-out over the phone sometimes get reactions from hanging up on me, to telling me to speak up, or the classic is, “call back, we have a bad connection”!
I belong to the National Spasmodic Dysphonia Association. A small group of people that have the problem. Mrs. Karen A. Feeley has written a book, “Easier Done Than Said – Living With A Broken Voice”. Much of the research was done by Mrs. Feeley and another woman that has the problem. They did research and an extensive survey, sending out questionnaire to over 2700 people. Seven Hundred fifty eight responded from all over the world that suffer with spasmodic dysphonia. It was very enlightening and confirmed a lot of things that I have noticed with myself.