Posted by: Barb ®
03/23/2005, 10:15:37
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Hello Chris,
Welcome to the BB. You will find a lot of information that will help you learn about SD on this board. This is a great place to learn along with being able to share your own thoughts and feelings. We all understand what it is like to have SD because we all have it.
You do deserve some sympathy because you are going through a hard time right now. The loss of your voice and knowing that it will never be the same takes some time to get used to. I know when I first found out that I had SD I went through the 5 stages of grief just as if I had lost a loved one. I still mourn my loss every now and then but time has made it a little easier. I hope that time will help you as well.
I can tell you that will be able to function as a father because I can still function as a mother.
I was listening to my daughter telling her friend about my voice and how I could not talk all the time. Her friend said " it must be nice because your Mom can't yell when you are in trouble." My wonderful 12 year old said " I know when she is yelling even if I can't hear her and boy is she loud." I had to laugh because I knew what she was talking about. That morning I had told her several times to clean her room but she did not do it. She kept trying to pretend that she could not understand me so she would not have to do it. After a few hours went by and the room was still a mess I walked in with a garbage bag and wispered okay I will clean it myself. The first thing out of her mouth was stop yelling at me I will do it. You see, she knew the garbage bag meant that if she did not clean her room all of her stuff was going to be put in it. I never would toss it all out but don't tell her that. I learned a long time ago that I could " yell" without ever saying a word.
I wish you the best of luck and I hope you can find something that works for you.
Barb Northwest Ohio
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Posted by: Linda Mott ®
03/23/2005, 12:11:36
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Hi Chris,
Yes we are out here; there are many of us. This is where you will receive, support, understanding, gain a wealth of information, and make many new, wonderful friends.I have had ADSD for 30+ years & I still work as a nurse. I communicate with my children & grandchildren & friends. I have found for me it is easier just to tell people up front what is wrong with me. If I don't do that, I begin to feel very nervous, self-conscious & panicked. I think it keeps people from wondering," what is wrong with her?" Once I tell them I can relax. I also have cervical dystonia so I have the bobbling head ( erratic, jerky movements). I agree with Barb; I also went throught the 5 stages of losing my voice; the same as when you lose a loved one. I was not correctly diagnosed until 2004 & received my first Botox injection in Jan with 60% improvement of my voice. This is where you need to be; educate yourself; read the posts & reach out to all the people that are here for you. May God bless,
Linda
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Posted by: keith ®
03/23/2005, 18:47:01
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Hi Chris:
I have to echo what others have said. There is so much of value to be found on the bulletin board, the most important thing being a great group of people who share something in common. I am a full-time public school music teacher, and was diagnosed with AB/SD last year. It gets quite frustrating, but I'm hanging in there taking it one day at a time. I think having SD made me count my other blessings so much more than I did before. Best of luck to you.
Keith
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Posted by: Mary Bifaro ®
03/23/2005, 20:52:35
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Dear Chris,I agree with the earlier replies to your post. By posting on the NSDA bulletin board, you are well aware that there is a community who understands what it is like to cope with SD. As a pastor, you are in a unique position of being able to raise awareness about SD. Since ours is such a rare disorder, it is important to educate the medical and lay communities. Good luck to you in learning how to cope with SD while retaining hope. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Marilee ®
03/24/2005, 11:50:04
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Mary makes a really good point. Raising public awareness
is our goal if we are to find better ways of dealing
with this disorder and/or finding a cure.I didn't make a living with my voice (I am a retired
secretary/bookkeeper) but I have been a Bible teacher
all my life, and I REALLY miss that. All I can do now is
write cards, letters & e-mail, so THAT is what I do.
I have educated all in my little congregation about all
the dystonias. I not only have SD, but cervical dystonia,
blepharospasms, and meige's as well. None of them had
ever heard of it, nor had my GP or his nurses. But now
they all know and are very supportive!!
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Posted by: Mary Bifaro ®
03/24/2005, 22:13:32
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All of us in the NSDA community can find a way to help us meet our mission. Sending communications is very important and it does help raise awareness. Paying annual dues to the NSDA is also vital as it will help us move forward. There is much work to be done. With all of us working together, we will find better answers for those affected by SD.Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Valerie ®
03/24/2005, 08:43:33
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Hi Chris,
There are plenty of us out here. And believe me, the more research I do the more I realize SD is not such a rare problem. It appears to me that many people go undiagnosed. I, like you, used my voice to earn a living. I taught high school science for many years until I had to leave the classroom due to this condition.A few people will say they know plenty of people that have SD that are "quiet" people and don't use their voices for much. Well, I would like to know who they are and if they REALLY have SD. I pray alot as I'm sure you do.
Valerie
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Posted by: Pastor Chris ®
03/28/2005, 05:09:21
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Hi everyone, thank you all so much for your thoughtful replies. I have just returned from a 1500klm round trip from my home in Rockhampton Queensland Australia to Toowoomba for a Gospel Music Festival. My wife and I were the trip parents to some thirty youth. Boy did I struggle!! I am learning to raise my voice in a wisper! My wife laurel is a great help and has taken on some of the more demanding communication roles. The good news from my congregation is that one lady is a Workplace health and safety officer at power station and has taken the role of my protector and will ensure my therapy is accepted and managed for the best outcome.Has anyone tried the old "warm honey and lemon" gargle, I am tempted to have a go at anything at the moment as I am feeling quite frustrated. I am off to see my doctor in the morning, probably for some more MMMs and Ahhs. Chris
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Posted by: Tommyinme ®
03/30/2005, 22:33:13
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Hi Chris. It appears you and I arrived at this site at about the same time, as I just accessed it yesterday. And yes, there is somebody out here. I've had SD for 19 years, and I suspect that people like yourself who are new to the illness are a little nervous and intimidated by this site. But for me, it's like a home I've finally found. A home full of people who are just like me. For many years I thought I was the only one with this frustrating speech problem. This BB seems to be full of very caring people, and I think I'll be coming here often. I'll be talking to you again, we have much to learn from and to teach each other. Tommy
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Posted by: Mary Bifaro ®
04/01/2005, 12:46:34
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Dear Pastor Chris,Quite a number of members of our SD Support Group have tried various throat remedies - such as lemon teas and herbs. For the most part, there is stress relief but no major improvement to the SD voice symptoms. As far as hearing mmmm's and hhhhh's from health care professionals, how about raising awareness by supplying SD literature? There is alot of information available by contacting the NSDA at its website at: www.dysphonia.org. Each of us can play a vital role in fulfilling our NSDA mission of raising awareness, advancing medical research and providing support to those affected by SD. Good luck to you. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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