Tuesday, November 16, 2010

Ignoring It Won't Make It Go Away!

Hi All!

My name is Trisha and I have ABductor Spasmodic Dysphonia.
(Hello, Trisha)
ABductor Spasmodic Dysphonia is a neurological condition in which the communication between the brain and the muscles controlling the vocal cords doesn't work correctly. This miscommunication causes the muscles controlling the cords to spasm uncontrollably.
There are two main types of Spasmodic Dysphonia - ADductor and ABductor. ADductor is the most common kind of Spasmodic Dysphonia and in this type, the muscles which close the vocal cords are affected. This causes the vocal cords to slam shut making the voice sounds strangled. ABductor Spasmodic Dysphonia is rarer and in this type the muslces which open the vocal cords are affected causing the cords to remain open. This results in a very breathy voice. There can also be a combination of both ADductor and ABductor types as well as the addition of a tremor to either type or the combination of both types.
Currently, scientists do not know what causes Spasmodic Dysphonia (SD) and there is no known cure. The only medically approved treatments are speech therapy and the injection of Botox into the spasming muscles.
Like I said, I have ABductor SD (ABSD). It only stands to reason that I would have the rarest type of SD - what with my being related to Uncle Murphy and all! When ABSD first showed up in my life I was happy. I had my dream teaching job and life was good.
Then, within the space of a month, my voice left me. And I do mean left me. I did not have a voice AT ALL for a little over a year. I struggled through a few months more of teaching before deciding to take a medical leave of absence which turned into a permanent leave of absence from teaching.
I went to speech therapy and became pretty obsessed with doing my exercises (after all, I wasn't working any more so this was basically all I had to do!). I tried the Botox injections twice with very little results.
I learned how to speak on the inhale (breathing in while speaking instead of the normal breathing out while speaking) and became very good at it. I started to build my endurance and suddenly started being able to say a few words normally. That led to even more intensive speech therapy and, after about eight months, I could speak "normally" even though it was very, very quiet. To counter the quiet voice, I wore a personal amplification device everywhere I went so I could be heard.
After about another six months or so, my voice began to get stronger and eventually I could speak without the amplification device! This change led to a real struggle on my part to continue doing my exercises and learning that if I didn't, my voice went into a steep decline.
Currently, my voice sounds pretty normal. In fact, if you don't know that I have a problem and/or you didn't know me before ABSD showed up, you might never think I have a vocal problem at all. Well - as long as I am faithful to my exercises!
Throughout this long process of speech therapy and exercises, I found great comfort in the National Spasmodic Dysphonia Association (NSDA). This is a group of people who have SD and who understand what it is like to not really have a voice. I threw myself into the NSDA and even started a support group with a friend of mine. I made a series of podcasts about living with SD. I tried to help others with SD as much as possible. All of this made me feel good about myself - voice or no voice.
And then.
My voice got better. It got better to the point that many people involved in the NSDA thought that I really didn't have SD. And many of these people told me about their disbelief.
Suddenly, the NSDA felt less like a family of people who understood what I was going through and more like a place where I had to constantly prove myself "worthy" to be included.
The friend who started the support group with me decided she didn't want to help anymore.
I learned that I am horrible at organizing meetings.
My life began to get busier with the classes I am taking to become a certified American Sign Language Interpreter.
It seemed like everything was falling apart.
So - what did I do? Well, I simply tried to ignore everything related to the NSDA.
You may have guessed that ignoring the situation with the NSDA and the support group didn't work out too well. In fact, I am just starting to deal with the results of that now! I am getting emails from people who have SD and who need help. Because I am ignoring things, I am not responding. Not good.
I guess I am going to have to get my gumption up and take care of things. I am going to tell the NSDA that I am no longer going to be involved in the support process. I am going to dismantle the website I had made for the support group. I am going to get out the correct way - instead of just ignoring things.
Now - I do want to make something very, very clear! The NSDA is a WONDERFUL group of people dedicated to making life with SD better for everyone who has this terrible disorder. I have rarely met such dedicated and passionate people. I am going to continue to support the NSDA. It is doing a good job with research and support for people with SD.
My problems with the NSDA are NOT typical and are the result of my freaky situation. If I felt more confident with my own situations I am sure that I could still be a part of this great group. It is very possible that I will become involved again at a later day.
Perhaps this is just not the correct time.
We will see.
Voice Update: Still doing very well. I have Speech tomorrow so we will see what Susan thinks soon!


Mental P Mama said...

Get back to them! You are an inspiration! Let the disbelievers go their merry way....

Coffee Bean said...

Oh Trisha! I am so sorry you feel that way. I can understand though. I am getting such a good result with the botox now that I switched doctors that those who didn't know me before have a hard time believing my case is as bad as theirs... when, in truth, my voice was worse. I and another gal just started a support group here in the Springs. I'm so glad that NSDA brought us together and I hope you know you have been a wonderful encouragement to me!

(((BIG HUGS)))

Anonymous said...

Hello there! I have had S/D for 10 years; around 2004 it changed from AD to AB, and I am the rarest duck of all - AB Mixed, with tremor when I'm really stressed. I am about 98% AB though. I also went over a year with ZERO voice, did not use Botox and have had wonderful success with regaining voice, but it has been a slow process to say the least. I just posted a message on the NSDA board and I am holding my breath about it. I left my email addy for a contact on the board, as I've just started a blog about my journey with SD, in the hopes that what I have learned might help someone else. I am so sorry to hear of your experience with NSDA :( but so HAPPY to hear that you are doing so WELL!Please come visit my blog - I'd love to get to know you :)