Adductor Spasmodic Dysphonia
I have this rare disorder. Adductor Spasmodic Dysphonia. ASD for short. Sounds like the name of a grunge band from Seattle. My friend Jaxon calls my disorder "dyspeptic paprika". Close enough.
Basically this disorder is a screw-up between the brain and the vocal chords causing a strained or strangled sounding voice often with vocal breaks. Bobby Kennedy Jr has this disorder...You know who he is: Kennedy family, environmental lawyer...hello?
The first time I saw RFK jr speak on television about a year ago I was devastated. I couldnt watch...the poor guy was grasping desperately for words to express himself. The sounds were so labored it pained me to watch. Now my voice is worse than his....but I have no self-pity and other than the fact that my dating life now sucks worse than ever, I dont really care. Jaxon makes fun of me which hurts a little, but what the hell. Of course I am an easy target these days....I sound like Marge Simpson after helium. This disorder hasnt really kept me quiet, although I've already begin wonder what its like to beg for sex in sign language.
On the other hand, Im otherwise healthy and grateful for that. The disorder started slowly. First time I saw the ENT Dr. my voice was near normal. Despite that I was lucky and got diagnosed after I got the "up your nose with a rubber hose" camera treatment. Thats where they put this mini camera up your nose and then down your throat to watch your vocal chords. Talk about youtube. Woo. If you ever have this procedure done, a bit of advice: "don't swallow". Those cameras are expensive and a little hard to digest. Also the Doctors office really doesnt want them back after you recover them. "What do you mean you won't take it back? it still works fine."
Given the fact that this disorder started slowly and was episodic in nature...you know good days and bad days, I took the traditional American approach to treatment. I call it the disinterested girlfriend dealing with horny boyfriend approach to medical treatment: "ignore it and hope it goes away".
I read through a lot of the literature. Lots of articles with big words. Very little of it made sense to me. I mean I sort of understand the medical literature....but it just didnt resonate with my experience.
The medical literature says that this is most likely a neurological disorder originating in the basal ganglia area of the brain. In other words its a movement disorder like Parkinsons. The medical literature also says there is no known cause and no known cures. Botox injections in the throat help. Needles putting toxic poison in my throat?????? What?? Nooooooo, Im not doing that. No way. They say surgery helps sometimes. Now here is where I get really confused. The theory on the surgery is that the vocal nerve is damaged, so the damaged nerve is severed and a healthy nerve is attached. But I still have moments especially as soon as I wake up in the morning where my phonation is near normal. I can talk okay. If the nerve was damaged, how can I have near normal moments? What happens during sleep that causes the nerve to temporarily function correctly upon awakening. Or what happens during the day to cause the nerve to stop functioning? And can those processes be augmented or inhibited as the case might be? Hmmm?
My intuition tells me that the nerve may have some damage, but its the brains reaction to the damage that causes problems. Once the voice begins to have problems, the brain sends a stronger and perhaps longer signal to the vocal chords to compensate for the weak voice. In this case the brain although well-intended is doing the exact opposite of what needs to be done....the brain needs to send a weaker and shorter signal to the vocal chords. The longer and stronger signal cause the vocal chords to slam shut and produce no sound despite the brains intentions.
So all this leads me to step 1. Im going to try and find a competent biofeedback provider with some expertise in this disorder....hopefully some expertise.
Well...let's see what happens.
Here is a vid of me speaking...Don't ask me why the vid is sideways. My phone is smarter than I am and a little bit insubordinate. Hopefully future vids wont have the same problem.
Basically this disorder is a screw-up between the brain and the vocal chords causing a strained or strangled sounding voice often with vocal breaks. Bobby Kennedy Jr has this disorder...You know who he is: Kennedy family, environmental lawyer...hello?
The first time I saw RFK jr speak on television about a year ago I was devastated. I couldnt watch...the poor guy was grasping desperately for words to express himself. The sounds were so labored it pained me to watch. Now my voice is worse than his....but I have no self-pity and other than the fact that my dating life now sucks worse than ever, I dont really care. Jaxon makes fun of me which hurts a little, but what the hell. Of course I am an easy target these days....I sound like Marge Simpson after helium. This disorder hasnt really kept me quiet, although I've already begin wonder what its like to beg for sex in sign language.
On the other hand, Im otherwise healthy and grateful for that. The disorder started slowly. First time I saw the ENT Dr. my voice was near normal. Despite that I was lucky and got diagnosed after I got the "up your nose with a rubber hose" camera treatment. Thats where they put this mini camera up your nose and then down your throat to watch your vocal chords. Talk about youtube. Woo. If you ever have this procedure done, a bit of advice: "don't swallow". Those cameras are expensive and a little hard to digest. Also the Doctors office really doesnt want them back after you recover them. "What do you mean you won't take it back? it still works fine."
Given the fact that this disorder started slowly and was episodic in nature...you know good days and bad days, I took the traditional American approach to treatment. I call it the disinterested girlfriend dealing with horny boyfriend approach to medical treatment: "ignore it and hope it goes away".
I read through a lot of the literature. Lots of articles with big words. Very little of it made sense to me. I mean I sort of understand the medical literature....but it just didnt resonate with my experience.
The medical literature says that this is most likely a neurological disorder originating in the basal ganglia area of the brain. In other words its a movement disorder like Parkinsons. The medical literature also says there is no known cause and no known cures. Botox injections in the throat help. Needles putting toxic poison in my throat?????? What?? Nooooooo, Im not doing that. No way. They say surgery helps sometimes. Now here is where I get really confused. The theory on the surgery is that the vocal nerve is damaged, so the damaged nerve is severed and a healthy nerve is attached. But I still have moments especially as soon as I wake up in the morning where my phonation is near normal. I can talk okay. If the nerve was damaged, how can I have near normal moments? What happens during sleep that causes the nerve to temporarily function correctly upon awakening. Or what happens during the day to cause the nerve to stop functioning? And can those processes be augmented or inhibited as the case might be? Hmmm?
My intuition tells me that the nerve may have some damage, but its the brains reaction to the damage that causes problems. Once the voice begins to have problems, the brain sends a stronger and perhaps longer signal to the vocal chords to compensate for the weak voice. In this case the brain although well-intended is doing the exact opposite of what needs to be done....the brain needs to send a weaker and shorter signal to the vocal chords. The longer and stronger signal cause the vocal chords to slam shut and produce no sound despite the brains intentions.
So all this leads me to step 1. Im going to try and find a competent biofeedback provider with some expertise in this disorder....hopefully some expertise.
Well...let's see what happens.
Here is a vid of me speaking...Don't ask me why the vid is sideways. My phone is smarter than I am and a little bit insubordinate. Hopefully future vids wont have the same problem.
posted by Sonoma Blue at 1:26 PM
7 Comments:
Get the botox shots !
Once the right dose is determined you will find some normalcy in your speaking patterns.
Michael, I am a medical student and I also have ASD. I've had problems with it for 3 years but currently my spasms are mostly under control. Like you I've noticed the episodic nature of this disorder, and this observation is not uncommon in focal dystonias including those affecting other muscle groups. I think this is explained by the fact that we use numerous different neural pathways to control the same muscles depending on the context. For example, we use a certain pathway to control our vocal cord muscles during normal speech and an alternative pathway for different vocalizations like singing. Stress and fatigue also affect the integrity of these pathways which is why your voice might be better after you wake than later in the day. Anyway there is probably some overlap and redundancies among these different pathways and I did have some success trying to train my brain to use these other intact pathways in my normal speech.
But the most effective treatment for me has been Botox shots. I was also hesitant to try this but it really is very safe. It's used cosmetically at a total dose of up to around 100 units. A lethal dose is estimated to be around 3000 units. For ASD the typical dose is around 0.5 to 2 units per side. The only downside is that for 1-3 weeks after your shots your voice will likely get pretty weak. Then you should have a pretty clear voice for 4-6 months. Not all ENTs have much experience with this given it's rarity so try to find someone with specific experience in treating voice disorders. You'll likely have to try a couple different doses to find the optimal one for you to minimize the initial weakness and maximize the effective period.
I really hope you find a treatment that works for you. It's an awful disorder but I think it cam be managed pretty well if you know all your options.
JL,
Thank you for your comments and support. You have articulated far more clearly than myself the possible reasons for the episodic nature of the disorder. Of course that only serves to reinforce my desire to try biofeedback as the the initial treatment.
My real issue with botox is that it seems to mitigate the desire to find a cure....Ive read articles by Dr Christy Ludlow of NSDA and ultimately I dont think she is interested in a deeper understanding of ASD or finding a cure...all I hear are platitudes rather than a burning desire to find cures....she talks a good game but I dont believe it.
While its a perversion of logic, In my mind getting Botox means that you are giving up and accepting the disorder can only be treated rather than cured. I cant do that...not yet...I cant give up. I wont give up. Not now and not anytime soon.
By the way, I hope my little blog was at least an entertaining look at ASD.
There is a SD group on Facebook....and you can find me on FB with the user name sonomablue.
Thanks again.
just wanted to be sure you are are aware of our organization, the only one in the world that deals with SD. If you will email me can send more info;
dsowerby@aol.com
National Spasmodic Dysphonia Association
300 Park Boulevard, Suite 301
Itasca, IL 60143
Phone: 800-795-NSDA (6732)
fax 630-250-4505
E-mail: NSDA@dysphonia.org
NSDA website:
www.dysphonia.org
I completely understand your concerns about giving up but I think the distinction between treatment and cure becomes irrelevant if the treatment can provide a level of improvement that is acceptable to you.
Also, given that there are no widely accepted cures for SD, you're essentially choosing between a very good "treatment" (validated and covered by insurance) and questionable "cures" (unvalidated and therefore you must pay out of pocket).
With that said, I'd be very interested to hear whether biofeedback ends up helping you. Though I feel that I've found a solution that works for me, I like to keep an open mind.
My main point is that there is a great option for you out there, so don't suffer with SD longer than you need to. Speech is so habitual that one could make the argument that the longer you spend with your SD voice, the harder it will be to break away from it.
Good luck with your search, and keep us updated!
I tried speech therapy with three different therapist over two years. I tried Botox on three different occassions with no benefit. I had pretty much given up, but decided to give the Mayo Clinic a shot. I had a consultation and evaluation, and an adjustment in the dosage and administration of Botox. I know have my voice and my life back.
Michael, read up on what Leon Fleicher did/ is doing to deal with his focal dystonia. Biofeedback does help-he tried all sorts of things, but the botox helps him a great deal. Also since it has to do with your vocal cords have you read about Alexander Technique-esp. because you are better with a long period of relaxation and change in posture and body movement. Anyway he is back to performing and sounding better than ever.
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