My new birthday is July 1, 2019 when I underwent DBS surgery (asleep for 7/1/2 hrs.) not only for dystonia but more importantly my Spasmodic Dysphonia...It was like being strangled all of the time. No one could understand me. I could no longer be understood on the phone and was fearful to ask for help shopping or going through a drive up window for fear of some ignorant person saying "I cannot understand you" and I'd leave crying. As soon as I tried to speak my vocal cords shut and I had to use what air I had to get out as many words as I could. Even sleeping was interupted and it wasn't until I received a CPAP machine that I noticed I slept all night and no longer woke up choking on the excess phelgm that my spastic vocal cords produce. It would take until 3 p.m. everyday (2nd dose of a handful of drugs) as well as clearing my throat just to get rid of the phelgm. At 61 yrs. of age, my holistic measures were at an end. I was maxed out of meds and just wanted to sing to my grandchildren and run afterthem. Success, immediately when I woke up from surgery, the strangulative hand of dystonia was gone.....Slowly, I began to use my spastic right arm again. I could feel my legs for 1st time in 25 yrs., and had no feet pain since way back then. I should have done this sooner and highly recommend it. The benefits to my whole body complete to amaze me. Even before my battery as turned on. So glad I had it done....Never give up....Never give in and never let anyone tell you that it's all in your head......Good luck to all & I hope that my story inspires just 1 person.
@@tammycarter6813 Hi, just wanted to share this video with you. It's enlightening. Watch his other videos too. ua-cam.com/video/AWweTJhlI9M/v-deo.html God Bless!
I am self dx with Adductor Spasmodic Dysphonia* it’s really hard on my bad talking days and I get upset when people say, “ I hope you get well”...I also hd excess phlegm and I’m CONSTANTLY clearing my throat... now I’m wondering if my weird sleep patterns have anything to do with it.
@@vjcarter4657 Yes most people with spasmodic dysphonia dont realize that your not sleeping well until your dr. orders a sleep study. Couldn't believe difference. Fount out tongue spasms closed my airway many times during sleep. So i was diagnosed with sleep apnea recd a cpap machine & finally slept in full REM state all night & no longer had the extra phlegm to spit up all day. Please check out all avenues. We don't need to suffer. WE JUST NEED TO BE OUR OWN BEST ADVOCATE...stay 💪
My name is Melissa and I'm from Trinidad & Tobago. I was diagnosed with SD approximately 7 years ago. Thanks for uploading as I continue to do research on SD.
Very informative... I hope many are improved. I was able to find a permanent path back absent of botox after being initially diagnosed by 2 physicians in summer and fall of 2019!
I think i have sd. I first noticed when i was pregnant at age 26. Gradually started noticing breaks in my voice airy choppy and hard to pronounce curtain words. also feel that if im aware of it. It gets worse.
Bеst Musсle Building Fооds: Еat ТТTТhеsееee Foods То Build Musсlее Мass Fast Read here now => twitter.com/a91eeee33e304b75b/status/742668391975096320 2015 NSDА Sуmpоsium Voicе Тhеrару Tесhniquеs for Sрpрasmоdiс Dysрhoooniа and Trеmor
THEY ALL HAVE THE CAUSE AND THE FIX WRONG.(I'm a medical and voice consultant.......email me to get the REAL DEAL......EMAIL ME AT: steveeone84@gmail.com)
I am sorry, but I have to call this presenter's rationale and ethics to question. There is no LASTING therapeutic cure for SD. Voice therapy is not efficacious. There are "tricks" that may temporarily divert or distract the pattern (the novelty effect), but once the novelty wears out and disinhibition takes place, the problem is back to baseline. I think it is unethical to mislead patients and take their money. I do not see any benefits in her suggestions or "exercises. The SD participants seem to be more on the ball than she is.
Everyone of us with SD & DYSTONIA is different. Mine is hereditary& we have about 15 people out of 80 that have ALL DIFFERENT SYMPTOMS & ALL DIFFERENT TREATMENTS. IT'S NOT 1 SIZE FITS ALL. KEEP TRYING NEW THINGS UNTIL YOU FIND WHAT WORKS FOR YOU...I HATED IT WHEN FAMILY OR DRS. SAID NOTHING COULD BE DONE. I SAY FIND ANOTHER DR. GOOD LUCK. 👌 KEEP GOING
This the best video I have yet seen on how to understand and manage my SD. Thank you so much.
This is a fantastic video for SD patients, thankyou NSDA300
My new birthday is July 1, 2019 when I underwent DBS surgery (asleep for 7/1/2 hrs.) not only for dystonia but more importantly my Spasmodic Dysphonia...It was like being strangled all of the time. No one could understand me. I could no longer be understood on the phone and was fearful to ask for help shopping or going through a drive up window for fear of some ignorant person saying "I cannot understand you" and I'd leave crying. As soon as I tried to speak my vocal cords shut and I had to use what air I had to get out as many words as I could. Even sleeping was interupted and it wasn't until I received a CPAP machine that I noticed I slept all night and no longer woke up choking on the excess phelgm that my spastic vocal cords produce. It would take until 3 p.m. everyday (2nd dose of a handful of drugs) as well as clearing my throat just to get rid of the phelgm. At 61 yrs. of age, my holistic measures were at an end. I was maxed out of meds and just wanted to sing to my grandchildren and run afterthem. Success, immediately when I woke up from surgery, the strangulative hand of dystonia was gone.....Slowly, I began to use my spastic right arm again. I could feel my legs for 1st time in 25 yrs., and had no feet pain since way back then. I should have done this sooner and highly recommend it. The benefits to my whole body complete to amaze me. Even before my battery as turned on. So glad I had it done....Never give up....Never give in and never let anyone tell you that it's all in your head......Good luck to all & I hope that my story inspires just 1 person.
What is DBS surgery and where was that done? I have been suffering since 1983 and I'm willing to try anything!
@@tammycarter6813 Hi, just wanted to share this video with you. It's enlightening. Watch his other videos too. ua-cam.com/video/AWweTJhlI9M/v-deo.html God Bless!
I am self dx with Adductor Spasmodic Dysphonia* it’s really hard on my bad talking days and I get upset when people say, “ I hope you get well”...I also hd excess phlegm and I’m CONSTANTLY clearing my throat... now I’m wondering if my weird sleep patterns have anything to do with it.
@@vjcarter4657 Yes most people with spasmodic dysphonia dont realize that your not sleeping well until your dr. orders a sleep study. Couldn't believe difference. Fount out tongue spasms closed my airway many times during sleep. So i was diagnosed with sleep apnea recd a cpap machine & finally slept in full REM state all night & no longer had the extra phlegm to spit up all day. Please check out all avenues. We don't need to suffer. WE JUST NEED TO BE OUR OWN BEST ADVOCATE...stay 💪
@@vjcarter4657 totally resonate with this - the worst is when people try to finish my sentences, VERY frustrating!
My name is Melissa and I'm from Trinidad & Tobago. I was diagnosed with SD approximately 7 years ago. Thanks for uploading as I continue to do research on SD.
Check this SD voice video out. ua-cam.com/video/AWweTJhlI9M/v-deo.html God Bless.
Very informative... I hope many are improved. I was able to find a permanent path back absent of botox after being initially diagnosed by 2 physicians in summer and fall of 2019!
How? Can we chat please.
This video is so great
I think i have sd. I first noticed when i was pregnant at age 26. Gradually started noticing breaks in my voice airy choppy and hard to pronounce curtain words. also feel that if im aware of it. It gets worse.
Great discussion on the benefits of direct voice therapy in addition to Botox for SD symptoms.
Bеst Musсle Building Fооds: Еat ТТTТhеsееee Foods То Build Musсlее Мass Fast Read here now => twitter.com/a91eeee33e304b75b/status/742668391975096320 2015 NSDА Sуmpоsium Voicе Тhеrару Tесhniquеs for Sрpрasmоdiс Dysрhoooniа and Trеmor
@@mdmuntakimtalukder3223 Check this voice video out. ua-cam.com/video/AWweTJhlI9M/v-deo.html God Bless.
i think i have this disorder ihope you help me
THEY ALL HAVE THE CAUSE AND THE FIX WRONG.(I'm a medical and voice consultant.......email me to get the REAL DEAL......EMAIL ME AT: steveeone84@gmail.com)
17:29-26:06
I am sorry, but I have to call this presenter's rationale and ethics to question. There is no LASTING therapeutic cure for SD. Voice therapy is not efficacious. There are "tricks" that may temporarily divert or distract the pattern (the novelty effect), but once the novelty wears out and disinhibition takes place, the problem is back to baseline. I think it is unethical to mislead patients and take their money. I do not see any benefits in her suggestions or "exercises. The SD participants seem to be more on the ball than she is.
Check this SD voice video out. ua-cam.com/video/AWweTJhlI9M/v-deo.html God Bless.
Everyone of us with SD & DYSTONIA is different. Mine is hereditary& we have about 15 people out of 80 that have ALL DIFFERENT SYMPTOMS & ALL DIFFERENT TREATMENTS. IT'S NOT 1 SIZE FITS ALL. KEEP TRYING NEW THINGS UNTIL YOU FIND WHAT WORKS FOR YOU...I HATED IT WHEN FAMILY OR DRS. SAID NOTHING COULD BE DONE. I SAY FIND ANOTHER DR. GOOD LUCK. 👌 KEEP GOING
We have to be our own advocate. Who else know our bodies better?? No one. DBS was finally my cure...
I find drinking alcohol reduces the symptoms. Only we cant be useing that as a daily option