Saturday, July 11, 2009

SD on Saturday

Hi All!

For those who are regular readers, I am going to go into my background with SD again so you may just want to skim this post. I might get some more interesting stuff going at the end.

Okay - here we go!

In January of 2007 I was diagnosed with Spasmodic Dysphonia - ABductor Spasmodic Dysphonia to be specific. This is a neurological disorder which affects the larynx. Basically, the muscles which control the vocal cords are told by the brain to spasm and those spasms either hold the cords closed (ADductor SD) or hold the cords open (ABductor SD) depending on which muscles are spasming. With either kind of SD it is very difficult to talk.

ADSD spasms make the voice sound choked and strained. ABSD spasms make the voice very breathy and faint. Both kinds are very difficult to live with and very, very frustrating!

When I was diagnosed, I had basically no voice. I could whisper because, interestingly, whispering doesn't involve the vocal cords much, if at all. I was teaching and had to quit because the stress of trying to keep everything together with no voice was just too much for me and was making my voice that much worse.

Luckily, I met a very experienced speech therapist, Susan, who has worked with quite a number of people with both types of SD. I began going to see Susan at least once a week and became obsessed with the exercises she gave me. I was determined to do absolutely everything that I possibly could to try to regain my voice. After all, I didn't want to look back in ten years and regret not doing something to help my condition.

Because the outlook for me regaining any "normal" voice looked pretty grim, Susan had me begin speaking on the inhale. Speaking on the inhale seemed to be the only option I had at the time for being able to speak at all. I practiced this very "different" method of speaking with focused determination and became pretty darn good at it. In fact, the people who know me the best said that I was starting to sound pretty much "normal."

Surprisingly, while working on developing my endurance while speaking on the inhale, I noticed that words would "pop out" normally once in a while. This led to a shift in the focus of speech therapy to strengthening my "normal" voice. Apparently, speaking on the inhale which involved the vocal cords in a different way than "normal" speaking tricked my brain into letting my vocal cords work normally!

After many months of speech exercises done with my usual obsessive focus, my speaking voice is about 97% of normal. Thank God and Susan!

Despite the fact that my voice no longer sounds like a typical ABSD person most of the time, I still do have ABSD. If you stress me out or get me talking a lot to wear out my voice, it becomes more apparent. I struggle with unvoiced consonants and have breaks in my voice once in a while no matter what I do. Speech exercises and laryngeal massage is a constant reality in my life. If I "fall off the wagon" and don't do my exercises, my voice suffers. If I do my exercises like I should, my voice sounds good.

I record a podcast called Learning to Live With SD. Its purpose is to help others with SD. My listenership is small since this is a very specialized content podcast. This blog was originally started to help spread the word about SD. I am active in local SD events and co-lead a SD support group. Advocating for SD is very important to me.

If you or someone you know has SD and wants to "talk" about it via email or even by phone, let me know. That is what I like doing.

Recently, I have gotten two different emails from people who don't know me but who have SD. It is so rewarding to know that I can help people in some way. Both of these ladies found me via the internet and I am excited to start a dialogue with them.

Even though returning to teaching doesn't look like a good possibility due to the amount of speaking involved, I am keeping busy with advocating for SD. Most people have never heard of it and I want that to change.

Thanks for reading my SD background. I just wanted to get it out there again.


Voice Update: My voice is very tired. It is sounding pretty good but I notice more breaks with those darn h's and p's. Also, I just don't feel like talking too much. It is taking too much effort again. I need Susan to come back and give me a good going over. I will ask one of the other therapists to help me out this coming week when I am at work but . . . I like Susan the best!

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