Posted by: irishlass701 ®
06/20/2006, 12:25:18
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Hi Jayme,
Granted life with SD will not be easy. I'm 61 and my problems started when I was 26-27. What I have found is that you have to be your own best friend. My friends also accept my disorder along with me because they are worthwhile people who understand who I am. That is a blessing. It is easiest if you tell people upon first encounter that you have a voice disorder, because people tend to react negatively to something they do not understand or to something that is unknown to them. Once they know, they will be more accommodating and understanding. There will always be jerks in this world. Just cut them out of your life and carry on. Stand up for yourself because you are NOT your voice. Let your voice work for you and not against you. Patricia
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Posted by: Mary Bifaro ®
06/21/2006, 17:16:42
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Dear Jayme,Welcome to the NSDA bulletin board. I hope that you will continue to interact with fellow SD patients on this excellent forum. Coping with SD is an ongoing process for all of us. Fortunately, the NSDA has been in existence since 1989, and we are not alone in our struggles with this rare voice disorder. Good luck to you, Jayme. Sincerely, Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Barbara S. White ®
06/22/2006, 20:44:25
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Hello Jayme,
I am Barbara and I had AD/SD for about 30 years before I was even diagnoised so went all that time without any sort of treatment. I only found out three years or so ago that I had SD. Botox always worked very good on me with almost no side affects. I used .5 units which isn't much but worked for me. Everyone, of course is different. Please don' crawl in a hole or withdraw from people. Yoou are a unique person and a disability called SD and there are so many of us and we like to help each other. But I do understand your feeling. I went through some of that myself. There are three different ways they do botox. I've experienced two of them but heard of at least three. The one one I had in Sacramento at UC / Davis where they stuck a neddle in my nose to numb it before they put a camera down my nose and watched on a TV monitor as they tried to hit just the right spot on my neck in two places. It was actually quite stressful for a big baby like me. (about 10 minutes) Later I moved and was near LA and had a few botox there. It was totally different. The doctor walked in, two tiny needle pricks in my neck as he felt for the first spot and it was all over. About 30 seconds. I heard someone say they had a needle sruck down their throat through the mouth. Sounds like that might have been what you had. Ugg! Is that the way you had it? Anyway, they do it different ways and sometimes they only do one side one month and the other side the next month. Some doctors are better than others and often it takes a few times to find just the right dose. We are all different. Remember botox is temporary. 4 months is actually a pretty good leangth of time. They usually last 3 to six months. Mine were always about 4 months except before I had surgery I went 6 months so that my doctor could be sure he got the spastic nerve. The surgery was very successful for me but it doens't work for everyone. It's good to investigate different kinds of treatment, but botox is the most populor. Do you have AD or AB / SD or mixed? Mine was AD/SD with tremmors. I have no tremmors, no spasms and no breaks in my voice now but surgery is strictly for AD/SD and unfortunately does not work for everyone. If you choose to ask more questions and ask more questions feel free to email me. gor4me@comcast.net Blessing / Barbara
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Posted by: no_use_for_words ®
06/24/2006, 16:59:04
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i had both of my injections at uc davis. first one was done by dr. kendall, i didnt know what to expect. i had a tube ran down my nose and throat to numb it and then a camera. it was all pretty intense, but quick.the second injection was done by a different doctor at uc davis. that one was kind of a nightmare. she kept missing the spot like 3 times and my throat was pretty sore plus i was coughing up a little blood. the results on my voce were great, but next time i should take a vallum or 2 so i dont get so nervous. im waiting for an appointment in redding with doctor kaplan. i guess hes gonna use some high tech equipment to locate the injection site. forget what its called but it will eliminate the whole camera down the throat hassle. im not sure what type of sd i have. i was told when i was diagnosed but cant remember. pretty sure its ad
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Posted by: hope for a cure ®
06/23/2006, 18:01:57
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Hi my name is Eliza. I am just like you but i am 19. I had it for 8 years. I feel the same way as you. I really don't have any friends.
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Posted by: no_use_for_words ®
06/24/2006, 17:12:49
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hi eliza, its cool to see someone my own age on here going through the same problems. school was very hellish for me. i had a lot of friends during middle school but i went to homeshool my freshman year cause couldnt stand speaking in class. i lost contact with most of them,but managed to hold on to a few real friends. i feel like i would have been a totally different person if it werernt for sd, but ill manage the best i can. i tried college for about 2 months but i had bad anxiety attacks and had to leave. so now im on disablility and trying to figure out where to go from here. maybe online classes would suit me a lot better. dont give up on people, not all of them are cold, the good ones will accept you for who you are. take care.
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Posted by: Linda Cannon-Mott ®
07/02/2006, 08:34:05
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Hi Jayme,
I want to welcome you also. I am 57 & have had adducter/tremor SD since I was 23. Everyone here understands what you are experiencing. After all these years I still get stared at, asked, "What is worng with you.", etc. For the most part I have found people are uncomfortable & don't know if they should ask or simply ignore us. I carry the wallet cards with me at all times & I tell new people I meet that I have a voice disability. This makes everyone including myself more comfortable & aslo will give you the wonderful opportunity to raise awareness. NASD is dedicated to make it easier for all of us with SD. They offer education, awareness literature, & this wonderful forum for us to share our thoughts, etc. Wishing you the best,
Linda
ADSD/1973
Cervical Dystonia/1989
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Posted by: mariaa ®
07/02/2006, 22:31:25
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I have had SD since I was in my senior year at high school. I am now 42. I had no idea what was happening. Everyone thought I was nervous or catching a cold.
I wasnt diagnosed untill I was about 26 years old.
I believe from what I read, each persons SD is different, like the degree of difficulty or the type AB or AD.
One thing we have in common is the challenge.
We all have been through good days and bad.
When you have a bad day, remember, a good one is coming soon!
There are people who love us, like our families and friends.
Remember that. And remember that its important for you to be ok, and try your hardest to manage, because others need you.
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Posted by: claudias ®
07/03/2006, 01:55:07
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Hi Jayme.
You're right about this forum being an amazing resource. I'm so grateful that I can get in contact with people like you who I can relate to. Being 19, I've been really scared about my future: if I'll be able to manage a career, if I'll ever get married, if I'll ever have children and if I do how I can be able to teach them to talk, and much more. I am also in a severe depression over losing opportunities and friends. If you ever feel a need to talk I'd love for you to contact me. I love to listen. Where in California are you from? I'm from Ca too!Claudia
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Posted by: no_use_for_words ®
07/08/2006, 09:02:03
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hey claudia, it is nice to relate to someone in my age group going through the same troubles.this disorder makes it hard for us to meet our expectations. the world demands so much from us, but im never sure how much i can give. i also feel like i miss a lot of opprotunities because my voice holding me back.its easy to avoid many important social situations.its hard to find good jobs that im comfortable with, so right now im just floating along unguided. im thinking about doing something for the forest service, maybe i can go out and talk to trees for a living lol.
so what part of california you from? i live in mount shasta, a small but beautiful town north of redding. i love this place but to many people know me and im not always in the mood to talk to any of them. i hate avoiding people but sometimes i just feel the need to.
im a very social person deep down,but my voice holds me back so much that i just shutup and let others do the pointless yapping.
anyways, im just blabbin on and on. if you ever wanna email me my address is purplestarguitar
@indiemail.com
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