I heard Lupita Nyong'o talk about this on The View. I had never heard of this disease. Seeing the video breaks my heart, but will be so helpful if I ever encounter someone suffering from Spasmodic Dysphonia. It must be terribly frustrating. I'm so sorry for those stricken with this condition.
u would hardly meet someone like us......it's really rare disorder.....and frustrating is very simple word...I personally feel awkward, ambaressed and most of the time depressing....love ur life...god has given u a percise gift, a healthy body
My mother has had this illness for more than 40 years. As someone who has spoken on her behalf for much of this time, I think she would agree that the most frustrating aspect is that people outside of her circle tend to be dismissive and assume she is mentally challenged. One of the best exchanges I witnessed was at her college reunion. A friend said, "Come on, let's go someplace quiet so I can learn your voice." After 20 minutes, she was able to communicate with her without disruption. Understanding and patience go a long way!
My uncle is mentally challenged, and I was diagnosed with anxiety disorders and autism (Asperger's Syndrome), and we both have been treated in a prejudice and condescending way. No matter whether a person is mentally challenged, has trouble or differences with their speech as in this video- and like you said your mother has had for 40 years, has autism, has down-syndrome, has mental illness, has other physical and/or neurological illnesses, or no illnesses or any struggles I mentioned here does not matter. What matters is how we treat each other. Jesus has the same love for my precious Uncle as he has for you and your mother and myself. We need to work on showing that same spiritual love for each other, and for God, and Jesus His Precious Blessed Son, our Savior, and for His Holy Spirit, our Guide and Perfect Counselor.
Remember these are real people. You can praise her performance but maybe don't do it on a video about a real problem people are dealing with. Idk it just seems insensitive.
I had no idea that the adductor type was anything abnormal. I always assumed that various levels of "gravel" in a voice were a typical component of voices. I'm glad research into this condition is being done so those with the condition may eventually be free of the symptoms.
My sister developed this in her sixties. It has ruined one of the joys in her life, singing in church, and it is difficult for her to carry on any long conversation. She has had Botox injected into her throat twice. She said it made her feel like she was drowning.
I too have suffered from this disorder. I had a botox shot in June of this year. I thought that I would be resigned to botox treatments every three to four months. After having the first shot, I decided to pursue an alternative treatment. I thought I could always go back to botox if the treatment didn't work. I went to a functional medicine neurologist in June and had an extensive neurological workup. The cost for this treatment, $8.000.00 is out of network. I talked to the functional medicine doctor who cured my neuropathy. She asked to examine the test results, which were forwarded to her. She then sent the results to a panel of 400 functional medicine physicians who came up with a set of brain balancing exercises to be done three times a day. I;m also seeing a chiropractor who has placed me on a daily regime of balancing exercises. And I get acupuncture once a week. The end result is that I can now talk normally. I can even sing, which is important to me because I conduct music therapy sessions four times a week at a local nursing home. My voice is now normal. I shared this at my church's thanksgiving dinner two days ago and had to watch for the possibility of the waterworks beginning to flow as I spoke. I empathize with you. It's tough to think that every squawk may mean a return to the ENT. I am grateful for botox, even though I don't think I will continue to need it. And I thank God every day for my wonderful functional medicine doctors. Barbara Altman: I have a video on my facebook fan page about this: Hope Shines Eternal. I too missed singing. I got my voice back. Feel free to contact me at 314-962-5324 or at AltmanB@sbcglobal.net
I do understand that feeling, cuz i had it also but I had Surgery in it change my whole life...God is so GOOD, i can take clear and GOOD no Straining Nor struggling
I have this. Please be mindful of people that sound like me. My version is worse it’s close to a whisper. I get hung up on all the time. I curse people out for laughing of trying to imitate me because they think it’s funny. 😔 I’m glad Lupita is bringing attention to it. But in most cases like mine, it’s not neurological. I became this way from an on the job incident, where building construction messed with my lungs and vocal chords.
Dear All my spasmodic dysphonia is cured after suffering for 3 years ...I am not taking any botox..but fully natural supplements by steve zarren.www.dystoniadisease.net/spasmodic-dysphonia.html
I got it a bit over a year ago. A dozen visits to all types of doctors and all they could say was “prob bad acid reflux”. Anyways, this is where my own research has led me. The same research doctors and the news and the govt tell me not to do. I sound exactly like Cathy. The internet is way more powerful than I truly understand. To say this condition sucks is to say the absolute bare bones least. But it’s opened my eyes to a lot more than I could’ve imagined. Good luck on your journey!
an older friends of mine for sure has this. it's not there 100% of the time, it comes and goes. but i noticed it later in her life. she said it "just happens sometimes" and she doesn't know what it is. now i think i can tell her! her voice goes from normal sounding to a breathy falsetto sounding voice like the lady you time stamped and it breaks a lot like when video lady holds a sustained note.
My dad is a realtor and he just got this disease. It's heartbreaking to see him go through this and it's starting to affect his career. I really hope there's cure to this disease in the future.
My aunt has a similar condition of the vocal chords caused by Parkinson’s, Botox injections to her vocal chords every 3 or 4 months allow her to speak normally, she’s a professor so I imagine vocal difficulties similar to your father
I think I have it. My voice is like trembling and shaky. my family and friends say I'm paranoid and it's nothing but when I had a presentation in class everyone thought I was crying. So embarrassing it caused me anxiety I kept doing breathing exercises and thought I can fix it by myself. Why oh why didn't anyone say there is such a condition I'm surrounded by doctors my sister is a med student and I'm a Dentist myself!!! How come no one knew! Just the thought that I had to endure all this time and hear someone call me retarded.
zee24z We have the same problem! >< My voice is shaky and trembling. First I thought I'm just nervous when talking infront of class but time passed by and even though I'm just talking to my sister my voice shakes. I don't know. it also caused anxiety to me. :/
I too have suffered from this disorder. I had a botox shot in June of this year. I thought that I would be resigned to botox treatments every three to four months. After having the first shot, I decided to pursue an alternative treatment. I thought I could always go back to botox if the treatment didn't work. I went to a functional medicine neurologist in June and had an extensive neurological workup. The cost for this treatment, $8.000.00 is out of network. I talked to the functional medicine doctor who cured my neuropathy. She asked to examine the test results, which were forwarded to her. She then sent the results to a panel of 400 functional medicine physicians who came up with a set of brain balancing exercises to be done three times a day. I;m also seeing a chiropractor who has placed me on a daily regime of balancing exercises. And I get acupuncture once a week. The end result is that I can now talk normally. I can even sing, which is important to me because I conduct music therapy sessions four times a week at a local nursing home. My voice is now normal. I shared this at my church's thanksgiving dinner two days ago and had to watch for the possibility of the waterworks beginning to flow as I spoke. I empathize with you. It's tough to think that every squawk may mean a return to the ENT. I am grateful for botox, even though I don't think I will continue to need it. And I thank God every day for my wonderful functional medicine doctors. Barbara Altman: I have a video on my facebook fan page about this: Hope Shines Eternal.
I would recommend anyone suffering with this read M.D. John E. Sarno's book The Mindbody Prescription. I'm reading it due to my RSI, but once you read the book you'll understand why I recommended it! This condition was one of the things he mentions, like my RSI. He had a treatment success rate of upward 90%+ with people considered to be incurable before he passed away this year, meaning symptoms never return.
I guess I should also mention you could find some interviews of him on RU-vid. He specialized in pain, but this voice condition and many other problems are enumerated in the book. It will be well worth anyone's time, since we all deal with what he lectures on, because we're human beings with an unconscious and emotions. Not just machines. It is also the cure to fibromyalgia, tension headache, chronic pain in any part of the body, some tinnitus, various psychological problems such as anxiety, OCD, and depression, and so much more. I have TMS according to his diagnosis, not RSI. He specializes in TMS. Spasmodic Dysphonia is a "TMS Equivalent", since it does not involve pain, but it functions the same. (:
I’ve sounded like this before when I used to hysterically cry as a child and couldn’t pronounce words when someone would ask me “what’s wrong” for example
I’m 25 and just got diagnosed with the abductor version of Spasmodic Dysphonia after 10 years of people telling me I just needed to relax and practice. Got botox treatment last tuesday, so will see in 3 weeks if it works for me. Fingers crossed. This condition is exhausting..
@@johnderat2652 yes it did! I got the treatment twice now. The very first time I started on the lowest doses in my left vocal cord, that didn’t do much. So 6 weeks after I went back and they did the same dose in my right one. People have been telling me I sound better and I can finally ask stuff in stores without people not understanding. I’d say my voice was 3/10 and went to a 5/10 so that’s a win! I’m hoping on a bigger dose next time and hopefully that’ll improve my voice even more. Treatment is (in my opinion) not very comfortable, but doesn’t hurt. And I get pretty out of breath the first 2 or 3 weeks. But so far I think it’s absolutely worth it!
I had never heard of this disorder before. Thanks to Lupita, I am now aware of it. As a consequence of the attention, I do hope a substantial amount of money can be raised to help the people who are affected by it.
I was diagnosed with laryngeal dystonia. The people in these videos can be heard! The type I have is so severe I can barely be heard even if I speak directly into your ear. I can only whisper very low and if I whisper too much I lose my voice completely. I have had this condition over a year now. Botox injections made it worse. Now, I have an extremely difficult time clearing my throat. Thus, just doing that can cause what teeny whisper to go away and a sore throat follows. Sore throat comes if I whisper too much as well. Too much is equal to about 50 words. It sucks bad! I can't call anyone, speak to people when out, yell when I get angry, etc. If I need my husbands attention I clap my hands. Trust me doing this in a public place makes me look like a nut! lol But it's all I can do. Thankfully, my husband speaks for me. No cause is known at this point. I just want to speak again. Even if I could speak loud like the people in this video are, I'd be happy with that. Very happy.
Anyone else feel,out of breathe and like your throat is closing up after watching this. I got anxiety from watching. I'm sorry to the people who suffer from this
This condition is not only stressful physiologically, it is emotionally stressful. Does every vocal dysfunction represent a call to the ENT for a botox shot? Will I have this the rest of my life? Depression often accompanies this disorder. I also had, and I can honestly say had, tremors in my right hand as well as facial tremors. The hand tremor left right after I started the brain balancing exercises. The facial tremors are still there,. However, they happen much less often. Barbara Altman, WWW.hopeshineseternal.com
Hello. I cannot say that I am an expert, but I believe that they are reading the same sentence so that you can hear certain patterns in speech, as well as have a comparison between the different people. Often when comparing speech issues, or accents, or whatever, you want a common sentence so that you can properly compare.
I'm in Australia, struggling to find someone to diagnose me, after listening and doing my own research because I started with a severe stutter, I have compared how I talk to the people on here and I sound very similar but worse than Stephie with the abductor, adductor, tremor spasmodic dysphonia. I'm so glad I've come across this video I was at my Witt's end and I'm close to stopping speaking all together. if you have anymore information can you point me in the right direction
@Lael Gabriel Parayao I was diagnosed with adductor spasmodic dysphonia I get Botox injections which aren't really working. I get 2.5units each side. I have no voice for 3-5 weeks (very soft volume) and then from then until 7 weeks a normal voice and then back to the tightness and forcing words out
@Lael Gabriel Parayao if I could afford the thyroplasty type 2 surgery I would have it done in a heartbeat. But here in Australia it's almost $8000 which I don't have
Why do you feel the need to comment such a thing? That could be somebody's mother. Imagine if she were yours. Would you like someone to share such an insulting thought?
H Y I felt the need because I admire the show adventure time and the people in this video who were brave enough to sit down for this. You don’t know me HY, so please back off! Also, my mother died 3 years ago and people have said worse about her. Bye!
I was originally diagnosed as having acid reflux. I never felt burning. The specialists in Augusta, Ga. along with my new ENT, Dr. Rust from Greenwood, SC diagnosed me with SD.
Yes! I had the same thought. -- And I also thought how interesting these folks sounded - I didn't find it off-putting or anything other than it made me more attentive to what they said. Of course, I have a daughter with disabilities, including cerebral palsy, and she can be difficult to understand sometimes. But I find her charming and sweet and wonderful and the love of my life. Please note: I am not at all prejudiced about her! :-)
I was pron to Bully since grade school. I cant even express my thoughts even I have a knowledge as I was afraid people will judge me once I started to speak. I cant get a proper job even I a a degree holder because of my voice. Can u imagine the life Im living? 😭😭😭
I heard the Spasmodic Dysphonia community are very upset about Lupita’s voice used as Red in the movie. If it weren’t for her performance, and her pointing the disorder out, I would’ve never heard of it. Educating people on disorders that are rare is very important. She’s put a spotlight on an otherwise little discussed condition.
The vast majority of people who have seen the movie aren't going to look into the disorder though, they just think of it as a "scary voice" because that's all its shown to be in the movie. If anything the movie just contributes to stigma against the disorder by presenting it as threatening and horrific.
Now I feel bad for thinking that the voice Lupita chose for Us was just odd and made no sense. Turns out I'm an arsehole for not knowing it was based on a real condition ... Something else to add to the many reasons I'm an arsehole.
i guess most of those who comment here have this illness. Well, me to. I am having this since 20 years old, now i am 32. Most people on the phone think i am 60 years old because of my voice. Sometimes i can speak easier, sometimes i can only whisper. But sometimes my voice clears out completely, i mean it becomes normal, but very rare, maybe 2-3 days in a year, which are the happiest days for me. Itried ol sorts of breathing exercises. I tried all sorts of voice exercises. I have been to a psychiatrist, psychoterapist, phoniator, phonoped, multiple different ones. I tried some psyhotrop drugs, it helped, but very shortly. My voice worsenes a lot with some kind of stress....without stress its better, i can say what i want, but not without the struggle. At least i am not alone with my disorder....I wish health to everyone.
I have been diagnosed with spasmodic dysphonia and tremors, which makes really difficult to communicate on daily basis even with my family,i am stressed about my work career, any advise please😪
i finally searched up why this Broadway star had to leave his show that just opened a few months ago and now I’m crying cause I didn’t know he couldn’t sing any more 😭😭😭😭😭😭😭😭😭😭😭😭😭😭😭
Thank you for this, I'm doing a story with a character with Spasmodic Dysphonia. But I've a couple of questions...Does it hurt their vocal chords, does it depend on the severity? Or is it just a discomfort?
BladesOfMunch Thankyou for understanding the embarrassement, degrading social situation, it is the vowels that stop the word coming out, you just cannot say A E I O U. I hope everyone with this problem reads my comments on Jimmy Rodgers- A Singer Silenced, Don't be disheartened there is that miracle Botox for you, please ask your Throat Specialist. Muriel xx Thanks for posting NSDA300.
I too have suffered from this disorder. I had a botox shot in June of this year. I thought that I would be resigned to botox treatments every three to four months. After having the first shot, I decided to pursue an alternative treatment. I thought I could always go back to botox if the treatment didn't work. I went to a functional medicine neurologist in June and had an extensive neurological workup. The cost for this treatment, $8.000.00 is out of network. I talked to the functional medicine doctor who cured my neuropathy. She asked to examine the test results, which were forwarded to her. She then sent the results to a panel of 400 functional medicine physicians who came up with a set of brain balancing exercises to be done three times a day. I;m also seeing a chiropractor who has placed me on a daily regime of balancing exercises. And I get acupuncture once a week. The end result is that I can now talk normally. I can even sing, which is important to me because I conduct music therapy sessions four times a week at a local nursing home. My voice is now normal. I shared this at my church's thanksgiving dinner two days ago and had to watch for the possibility of the waterworks beginning to flow as I spoke. I empathize with you. It's tough to think that every squawk may mean a return to the ENT. I am grateful for botox, even though I don't think I will continue to need it. And I thank God every day for my wonderful functional medicine doctors. Barbara Altman: I have a video on my facebook fan page about this: Hope Shines Eternal. I too missed singing. I got my voice back. Feel free to contact me at 314-962-5324 or at AltmanB@sbcglobal.net
swan. i have a very mild case of SD and sometimes...on the occasions that it really kicks in, my throat feels strained and aches. Also, I can determine mid sentence what word I will stumble on and often can think of a substitute word or use a stalling technique such as saying "um", taking a breathe and talking as i let the breathe out, clearing the throat etc. HTH
I just heard of this after googling Jeff Pegues' interesting voice. Anyway, it kind of reminds me of when people jokingly imitate elderly people speaking... is it more common in seniors?
Idk what brought everyone else here, but I'm here because I'm about to turn 20 and I've recently found out that what I've had my whole life is dysphonia. And I've never found a single person who sounds like me. No people in this video sound like me either. Idk.
I was just diagnosed with it and I feel like when I get a bit anxious around people bc my voice has became such an insecurity it does make it worse my specialist did recommend speech therapy bc of this
Spasmodic dysphonia is a type of dystonia! Dystonia is an umbrella term for many many disorders that all involve involuntary movements. You can have generalized dystonia which is when many muscle groups are affected, or a focal dystonia like this one, where just one group of muscles or structures are involved. There is also oromandibular dystonia which is involuntary movements of the face, jaw, tongue, cheeks etc. Another word for spasmodic dysphonia is laryngeal dystonia, because it's involuntary movements of the muscles of the larynx. This is from a Speech Pathology grad student. Hope that helps!