I was diagnosed with Spasmodic Dysphonia in 1995 when I was fifty-seven years old. After my diagnosis I thought whoopee, I can get my voice fixed now, however that would not be the case. Neither Botox injections nor speech therapy helped my Spasmodic Dysphonia. Two more tries with two different ENT's had the same results. My family physician told me – as nicely as possible- I just had to accept my diagnosis and learn to cope with it.
One day our grandson, who was born after my diagnosis of Spasmodic Dysphonia, asked me why I was going to the doctor, I told him to see if I could get my voice fixed. He looked at me and said, "but grandma, I like the way you talk." This turned out to be a precious moment for me.
When I was first diagnosed I thought about what I wanted to say before using my voice. I've learned when I don't think about speaking, my vocal cords don't tighten up and I have a voice.
The first time I tried to order fast food through the drive through, I was speechless. I couldn't get my voice started – I opened my mouth and tried to talk but not a sound came out, my voice froze up. My vocal cords had clamped together and left me speechless. I've learned not to focus on speaking, not to think about what I want to say before speaking and just say it. Now I can order and very rarely have to repeat my order.
Talking to an automated system on the telephone has been difficult to accomplish. Now I'm able to go off in a room alone so I can speak louder where my voice is understood.
When talking to a person on the telephone I inform them of my voice disorder and if they need me to repeat anything to please ask me. Everyone is so kind, which puts me at ease and makes it easier for me to speak.
When I meet people – who don't know of my Spasmodic Dysphonia – I'm now able to tell them of my voice disorder before conversing, making it easier to speak. Before I became bold, I avoided conversations.
Since my diagnosis of Spasmodic Dysphonia my husband has developed a hearing problem and now wears hearing aids. My Spasmodic Dysphonia was very trying for both of us. I've found if I speak in a lower voice, speak slowly and distinctly he can understand me, plus it's easier to get my voice out.
After having Spasmodic Dysphonia, there were two things that surprised me. The first was when I talk in a high voice – (like when I baby talk to my grandbabies or pets), the words flow without any effort at all. If I could train myself to speak in the high tones I wouldn't have the strain on my vocal cords but would sound like Karen on Will and Grace. At times when I'm trying to get my message out, I can do so by changing my voice to the higher tone.
The second thing I found is that I can yell and the words are loud and clear, other times I can speak in a loud whisper and be understood.
When I received the e-mail to write my story about how Spasmodic Dysphonia has impacted my life for the better, I thought – you have to be kidding. How can a voice disorder do that? Remembering the ways I've handled my voice disorder helped me realize how Spasmodic Dysphonia has made me a stronger person who can cope with whatever is given to me, and has indeed impacted my life for the better.
Before having Spasmodic Dysphonia, I took having a voice for granted. Now, I don't and I'm thankful for whatever voice I my have by using my coping skills. I hope the things I've learned and shared will help others with Spasmodic Dysphonia.
Knowing Spasmodic Dysphonia is an incurable neurological disorder, sometime I wonder what causes the disorder. I can only pray that in the near future there will be an answer to my question and a cure or treatment will be found for all who have Spasmodic Dysphonia – so that once again their God given voice may return for them to speak as easily as breathing.
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Personal Experiences
Nancy C. Davis.
