Posted by: David Barton ®
12/22/2003, 19:46:48
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Hello CathyWelcome to the NSDA Bulletin board - you're now among new friends, and you'll find plenty of information and support here, as well as finding we are interested in reading about your experiences with SD. Ask any SDer if they have problems on the phone, and they will agree it's one of the worst stressors. However SD is not a social anxiety disorder - people who have the voice we call SD, or spasmodic dysphonia, are suffering from a neurological movement disorder called laryngeal dystonia - what happens is that the brain is sending inappropriate signals to the vocal cords. This problem is essentially beyond the patient's full control in a conversation situation. Please don't blame yourself for your SD - although stress makes it worse, and of course because of the SD, social interaction with others is difficult - BUT - SD cannot be put down to stress. It's a neurological condition, just like Parkinsons and MS are. SD is a variable disorder - it can change from situation to situation, from hour to hour, day to day, and over a period of time can get worse or lessen somewhat. A few patients can experience a remission - of sorts. Try to connect with other SD patients nearby - the NSDA can help you with that - I've included their website address at the end of this post. Attend an NSDA symposium if you can - the next one is in Dallas, TX - March 20, 2004. It's a great opportunity to network with others and find out more from the experts. One of the keys to dealing with SD is arming yourself with as much information as you can. Best wishes David Barton
Related link: NSDA Website
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Posted by: Samietooo ®
12/23/2003, 12:03:17
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Hi Cathy. In reading your post to the BB, I saw that you wrote the doctor said you over used your voice. May I ask what kind of doctor he/she is?When were you diagnosed and how long have you had this problem? I'm sorry to say that most of what you described, I've heard before from other SD'ers. And as David Barton said, we have a great deal of difficulty speaking on the phone, in public, etc. As with most things in life, it depends on how we handle SD. In our chat group, Voices, there are many people there, who have somehow managed to overcome the fear of talking (or seem to have), and lead 'normal' lives and are very successful. There are others, like myself, who have let SD rule their entire lives! So much time wasted, so many years!! I applaud you for getting another job, Cathy! That IS a HUGE step in the right direction!! You're too young to allow this to take over your life whether it's temporary or permanent. Keep going Cathy! We're all behind you!!
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Posted by: Richard ®
12/23/2003, 15:08:42
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Hi Cathy,Maybe you have "social anxiety" because you have a speech/voice problem (SD). It's very embarrassing to talk, or to anticipate talking, to people. I have recovered from the reticence to speak, and can talk to anyone, anywhere, about anything. That's a good thing, because I like to talk. Please note, as David says, spasmodic dysphonia is a neurological disorder. It isn't your fault. Best wishes,
Richard Callen
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Posted by: janika_3 ®
12/25/2003, 02:35:10
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Hi Cathy
I can identify so much with what you've been saying. I've only just been diagnosed with spasmodic dysphonia and have spent the last 30 years believing that my speech problems were "my fault" and were caused by a social phobia. For me its a huge relief to know that my speech is something that is basically beyond my control and has nothing to do with who I am as a person. I still feel self-conscious about it and find it very annoying at times, but I also refuse to let it rule my life any more. I also had to change jobs at one time because of my speech and spent years in a job that was ok but I never really enjoyed. I'm now thinking about re-entering the workforce after 12 years as a full time mum and am trying to pluck up the courage to work with people, which is what I really want to do, in spite of my disability. Its a hard thing to do, but I'm finding that if I believe in myself and not let my speech affect my life, then it doesn't seem to be such an issue for others either. I know how much SD can knock back your confidence - I've been there too - but I'd really encourage you to go for what you want in life, just be yourself around others, in spite of how you sound, and you'll be surprised at how much you can achieve. And keep talking to all of us on this BB. It helps a lot knowing there are others out there experiencing the same sort of things, and being able to encourage each other at the same time.
Take care,
Regards
Lyn
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Posted by: Harriet mandel ®
12/25/2003, 22:59:10
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After trying for ages finally got
Dianne Rheems ( I am not sure if I have her name right) broadcasting on the radio....as she talked it was like listening to myself and feeiing all the effort it was taking to get the words out. Obviously, it was time for botox,again......Wonderful woman, if she is gutsy enough to talk to such a large audience guess I should be able to handle the sound of my voice between shots too.
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Posted by: Lynne Martinez ®
12/25/2003, 23:44:34
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Congratulations, Harriet. Listening to others dealing with SD is so important, and Diane Rehm is one of our spokespeople with name-recognition.I forget where you are located. We in the West (I'm in California) cannot get Diane Rehm's WAMU broadcast on the radio, as she is in Washington, DC; but, her shows are also available on the Internet through the WAMU radio-station website, with audio software. Diane has been to two SD/dystonia symposiums - the International Dystonia Symposium in Victoria, BC in May, 1999 (speaking about her book "Finding My Voice") and was also a featured speaker at the huge SD Symposium in Washington, DC earlier this year. She is a captivating speaker who relates very well to an audience. She entertained almost 300 of us in attendance this past March. She's had alot of practice (having interviewed world leaders, etc.) but is also a fellow-patient. Like Robert F. Kennedy, Jr, she has lent her name to the NSDA by being an Honorary Director of the association. In DC, Diane spoke of some of the techniques which help her. Speaking slowly is one. I'm a fast-talker so that technique really defies me. Unfortunately. She has it down very well. I don't know how she does it! Diane's SD Symposium presentation was extremely enjoyable. By coming forth several years ago, regarding her SD, she's educated many of her East Coast listeners who otherwise would be clueless about our disorder. Since she is local to DC, many attendees at the DC Symposium in March were familiar with her. I shook her hand in Victoria (1999) but had never heard her radio show until a year or so ago, via the Internet. You may want to go to the "dystonia-support" website and pick up the full transcript from the DC Symposium. Click on "Symposium Reports" and then DC. Diane's presentation should be in there. She spoke around lunch-time. I'll post the link below. Lots of great information there. Diane and others. --Lynne (AD-SD; Northern California)
Related link: http://www.dystonia-support.org
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Posted by: patricia ®
12/26/2003, 03:58:48
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H Kathy my name is Patricia. I was thirty five when is first started having problems with my speech, and for someone who talks a lot that was very hard. I heard all the jokes from my family, well you finally wore out your voice and the doctors telling me if I would just relax my voice would be fine. At the time this happen I was working in the medical field and the doctor I was working for at the time tried to help but that was 1986 and not too many people knew about SD, it took until 1999 before doctor finally had a name for what was wrong with me. After so many drs not knowing what was wrong I gave up and decided I would have to live with it. Then my brother in laws father was the hospital and my brother in law had a talk with his emt and he wanted to see me. One visit and I had a name for what was wrong with my voice. First thought ok im not crazy then what can we do. Botox worked great the first time but now I’m not sure if I can go through it again, but I have appointment on Jan six at ucd. your letter got to me for the fact that you are so young and I have also change jobs a lot because of sd, anytime I got to a point where they were giving me more contact with phones or too vocal I would leave .I have a good job now not what I though I would be doing but I its a living. Hope this gives you a little insight to what we all go through sometimes I don’t come to this site for months because I think to my self there is nothing wrong with me. Then the Botox wears off lol lol anyway have a merry Christmas hope I helped somewhat
Patricia
Modified by Moderator-DB at Fri, Dec 26, 2003, 04:06:32
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Posted by: Kimberly ®
12/29/2003, 18:36:07
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Cathy,Your story sounds very familar. My SD started when I was 34, two years ago. I understand exactly what your going thru. Today, I had a bad day at work. I just felt like my voice was failing me and was ready to burst into tears. I'm getting close to getting my second Botox injection, so my voice is starting to go back to its "old" self. Nobody said anything to me about how I sound, and actually a friend of mine said that my voice sounded good. I think I'm harder on myself and I think that I sound terrible and really nobody even notices it. I speak better when I don't think about what I'm going to say. If I think about it, my voice is worse. Last week, I had to go to my PCP and he never heard of SD and I had to explain to him what SD was. That was depressing. He told me that I was his only patient and that he probably missed that lecture. I'm glad that I found a specialist that knows about SD and is treating other patients with this SD. We need to live our lives and do not let this disorder get us down!! I will continue to fight this!! Hopefully they will find a cure soon!! Kim
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Posted by: Lambert66 ®
12/29/2003, 22:44:46
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Cathy,You are so very young at age 25 to have this disorder. I was 26 when I was diagnosed with Adductor Spasmodic Dysphonia. In 1989 I was the youngest in my support group. My job at that time was delivering letters for the Post Office. Not much talking required in that job. For ten years I learned to function as a mother to two young children without a normal voice. They grew accustomed to it and until I changed jobs there was no need for Botox treatments. It is difficult to persue what you want to do in life knowing you have a disability. Don't let it get you down or stop you from living your dreams. Remember to make accomodations for difficulties with speech. People are willing to help if you let them. It is your decision to whom and how you explain your speech disorder. Usually I will tell someone when asked by a close friend or coworker that I have a Dystonia. A Nerological missfiring of the muscles of the vocal chords causing uncontrolled spasms. If the person is an aquaintance that is seldom seen my response is usually that I am fighting a cold. Other people in my support group use other tactics over the telephone such as we must have a bad connection. Just something we can have fun with I guess. I am now 42 years old have held a job requiring the use of my voice and am embarking on going back to College to persue an Associate Degree. Don't let SD stop any of you from living a happy life. As far as social anxiety, it is my personal opinion that SD caused your Social Anxiety. Doctors are not Gods and you don't need to believe everything they say. By learning about your disorder you will be armed and then in your own time you can help to educate your doctors. Remember someone out there is the worst doctor in the world. Worse yet someone out there is his patient. Donna
Michigan
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Posted by: Cathy ®
12/30/2003, 11:07:18
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Thank you all so much for your support. I didn't think that I would get so much feedback. My drs informed me that w/SD, people are suppose to be able to sing. I use to be in chorus when I was in high school. When I try to sing w/the radion or on my own, I sound absolutely terrible and I use to enjoy singing. Does anyone else have that problem?One more thing that I would like to share w/everyone. On Dec 24th, I was watching ET. There was a story about a little girl. She was born normal. She started walking and had all her mobile skills. All the sudden, she started to loose her mobile skills. She couldnt' walk, feed herself anymore and was in a wheelchair. Her mother took her to the hospital. The drs could not find anything wrong w/her. Once again the mother took her daughter to the hospital and she said she refuses to let her daughter die. The drs ran one more test. They tested the little girl's spinal cord fluid and the drs found that the little girl was lacking folic acid. Now the little girl is taking a prescribed folic acid from the drs and the little girl is slowly getting all her motor skills back. Is it possible that something so simple like this can be our problem? I will keep praying for a cure. Thank you all again,
Cathy
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Posted by: Lambert66 ®
12/30/2003, 11:43:18
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Cathy,Some doctors think SD is psycological. Like Stutterers they believe you should be able to sing. Maybe in a higher pitch can I sing, certainly my normal singing voice is affected and only after a successful Botox have I been able to sing as beautifully as I used to before SD. There are several people who have SD who used to be professional singers. Most have given it up. My doctor told me to take Folic Acid. I am taking Geritol with 100% Daily supply of folic Acid and still have SD. Donna
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Posted by: mel dubovick ®
01/02/2004, 16:44:00
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I worked for IBM for 36 years before retiring. During the last six years, I had SD. During this time, I was able to stay in my present job and actually got promoted into management of a fairly responsible division position. How did this get accomplished?
1. A very understanding manager who said he "wanted me for my brain, not my voice".
2. Botox shots that worked (more on this later)
3. Prescription drugs that my doctor gave me after I wanted to get off of Botox.You made a statement of not knowing if Botox worked. You should consult further with your Botox doctor/staff. They should have told you that within 24 to 48 hours after your Botox injection, you will experience a breathy voice or even lack of a voice for a short time. If this does not take place,
THE BOTOX SHOT DID NOT WORK. The breathy voice within 24 to 48 hours after the shot is GOOD NEWS for it means the shot worked.
When the breathy voice goes away (different for every person)
you should have a normal or near-normal voice. After this breathy period, I could speak so "normal" that I could give presentations in New York and the people there had no idea I had SD. Someone told me that they totally avoided the breathy reaction to Botox by using prescription drugs. Taking Neurontin combined with Klonopin controlled my SD for a year and a half.
After the 1.5 years, its effectiveness wore off. Now I'm going back to Botox for a year or so. Then will try the drugs again. When you are stressed, your voice will not be as good. There are many ways to reduce stress, too many to mention. I used acupuncture and found it helpful. I'm going to work out in the gym and hope to benefit many ways from that effort. I hope this gives you some encouragement and some avenues to pursue.
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