I'm out of the closet


Posted by Micheal Paulson ® (MICHEAL PAULSON,Micheal Paulson), Mar 17,2002,09:18   Archive
Hello Everyone,
I just got home from a store meeting were my manager announed that I have SD.He read some information that my wife had printed off the web for me.I hope that by letting everyone know what is going on that we will all be able to work together a little better.After the meeting we posted some information in our breakroom for everyone to read.Now maybe they will be able to explain a little better to our customers instead of saying "Mike will help you,but he can't talk".We will see what happens.I want to thank all who have given me encouragement these last couple of weeks,your words of wisdom have been a great inspiration.I hope that I can help do my part and let everyone know that we are all normal people,just challenged by something that even the medical community does not understand.Please keep up the good work.Also like Randa I am still looking for how symtoms started,did antone else completely lose their voice,when did it come back,ect.So far my ENT has recommened botox as a last resort and has me in speech theraphy instead.I have not noticed any improvement yet and still feel alot of this seems to be a mental block in my case.Does anyone else feel the same?Looking forward to our next conversation,thanks for giving me a "voice" to the world.......Micheal



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Re: I'm out of the closet

Re : I'm out of the closet --- Micheal Paulson
Posted by Jan Joiner ® , Mar 17,2002,18:08 Top of Thread Archive
Micheal,

Yes, to try and answer your question, I did/have completely lose my voice time and time again. At least 3 or 4 times a year. With Botox it would sometimes come back, however the longest period of time with good voice after a botox injection was 5 months. And the longest time I was without a voice was 10 months.

Having speech therapy does not and will not cure SD, but it can help, and for a lot of folks it is all they ever do as treatment. Botox is a wonderful thing, but has a number of side effects. Such as, strangulation meaning (Asperation)from thin liquids. Having a Whispery, breathy voice for long periods of time. It is sometimes difficult to find experienced doctors who are trained for certain voice disorders and/or Botox Injections. However, things have changed a lot now and doctors are beginning to recongize these disorders more quickly. And it does take some time get the Botox doseage right for each person. It takes a lot of patients and courage to go through the ups and downs of Botox. I mean sometimes the doctor will miss the correct muscle to inject and this means re-peated injections or not get a good effect to be able to properly help the voice like it should. If you do get the whispery/breathy voice and some asperation of liquids, you can feel pretty confident that he/she hit the right location. And depending on your doseage and severity voice, the whispery/breathy voice might last a month or so in that stage and then good voice may follow. Then again it might not effect you at all are you might go back into spasms. I guess I am just making it difficult and confusing, I don't mean too. I'm no professional or doctor here, Just giving my experiences and two cents worth for what it counts.

If I were still having spasms or if I ever need to, I'd have no problem going back to Botox. It is a very personal decision and everyone has there own opinion as to which type of treatment to pursue. I first choose the less invasive forms of treatment before trying Botox. So for me nothing seemed to work, not even speech therapy. It did help, but I couldn't stand the uncertainty or not knowing what to expect next. If there was something out there that would make me even close to normal again, I wanted it. Nothing against speech therapist, just takes practice and a lot of hard work and deication. If fact I am seeing a Speech Therapist at this time to fine tune my vocal skills and re-train my voice to last for longer periods of time without getting so tired or abusing it.

Hope this helps.

Regards, Jan Joiner - Alabama - ADSD - SLAD'R Surgery 6/01

--modified by Jan Joiner at Mon, Mar 18, 2002, 20:38:57




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Re: I'm out of the closet

Re : Re: I'm out of the closet --- Jan Joiner
Posted by Laurie ® , Mar 17,2002,18:18 Top of Thread Archive
Jan,

I'm a little confused. You list "stranglation" as a side effect of botox. By this I'm assuming you meant to type the word strangulation. In either case, how do you define this side effect? I know people with SD have a "strangled" sounding voice, but I don't understand how it's being defined here as a side effect of botox.

Let me know. Thanks,
Laurie

--modified by Laurie at Sun, Mar 17, 2002, 18:20:49




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Re: I'm out of the closet

Re : Re: I'm out of the closet --- Laurie
Posted by Jan Joiner ® , Mar 18,2002,20:47 Top of Thread Archive
Laurie, thanks for bringing this error to my attention. I did mean to say Strangulation. Or perhaps a better word for this is "Aspiration".

I have modified my post, so please if you don't mind and it is not too long, read it again and see if it makes better since and clears up any confusion. I am sorry, I didn't mean to confuse anyone. Sometimes I can't but the right words together when I'm trying to say something. I agree "strangled" is a totally different descprition or definition. Meaning more of a tighting, almost like you are being choked by someone in the throat. I hope I having totally confuse Michael or any of the others.

Regards, Jan Joiner- Alabama - SLAD'R Surgery 6/01




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Re: I'm out of the closet

Re : Re: I'm out of the closet --- Jan Joiner
Posted by janice yarbro ® , Mar 23,2002,11:43 Top of Thread Archive
I have had the same experience in the work world. I agree that we have to stand firm and educate the public. I have been out of the closet for quite a while. Trying to hide my SD interfered with my life.
I also have encountered problems with other ppl accepting the fact that I have an abnormal voice. I am just glad I have one. It takes a lot of courage to face everyone. I applaud your effort in confronting others with your condition.



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Re: I'm out of the closet

Re : I'm out of the closet --- Micheal Paulson
Posted by karen feeley ® , Mar 18,2002,13:22 Top of Thread Archive
Micheal-

Wow! You are so brave to have just let everyone know like that! I admire your courage. What were people's reactions when they were told? How did your boss take it? How have your coworkers reacted? Please let us know if you notice any difference in their actions/attitudes toward you in the coming weeks.

-Karen




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Re: I'm out of the closet

Re : Re: I'm out of the closet --- karen feeley
Posted by Micheal Paulson ® (MICHEAL PAULSON,Micheal Paulson), Mar 21,2002,22:13 Top of Thread Archive
Hi Karen,
I don't feel like I was real brave,I just wanted my co-workers to understand A little of what I (we) are up againest.I have been back at work for 2 months and there were still quite a few people that didn't know I couldn't speak.Then after being treated very rudely by a supervisor in front of customers I knew I had to get the word out if I am going to continue working in my current position.I will be keeping everyone up on how things are going and promise to share the good and the bad.I have learned so much from the group that I fell I must share my experiences in the hopes that it will be of benefit to someone.Keep in contact please........Micheal



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Re: I'm out of the closet

Re : Re: I'm out of the closet --- Micheal Paulson
Posted by Jean C. Phelps ® , Mar 23,2002,00:25 Top of Thread Archive
Micheal, You have made the biggest step. Its hard to admit, that no you just don't have a cold, no its not laryngitis. Instead this is way I sound, this what Im going sound like and that there is not a definitive cure for this rare and complicated condition. A condition that even though the out come effect is the changes in our voices, we all have or some have different forms, sound all different or not at all. Im in the AB/ category which is not at all. I have found that when I deal with people and they say, WOW, you have a terrible cold, or if I have seen them again and they still not over that cold. I just look them in eye and say, no its not a cold, I have a neurological condition. Immediately there is silence, then most often subtle understanding.

Yes I have had my share, like I most on this board, of rude and hurtful remarks, but I discovered that once I met the dragon head on then it really didn't matter what they said. I stand my ground. However if the comments continue, I remove myself. So far I have lost 4 friends over this, a job, and limited social activity. What I have gain is an inner strength, a better sense of self, and support of the friends that have chosen to be my friends.

As with everything this takes time, but we can get there together.

Jean Ab/sd
Virginia




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