Share Your Story Contest on the NSDA website

I just received notification that the Spasmodic Dysphonia Share Your Story essay contest is now open. For those who are unaware of what this is, the National Spasmodic Dysphonia Association (NSDA) is sponsoring a contest where people were supposed to write about their experiences with spasmodic dysphonia. The theme is:

Having a voice disorder does not mean your story cannot be heard. What if you had the world's attention for 15 minutes? What would you say about SD? Help us share your story with the rest of the world.
We are looking for stories about how SD has impacted your life for the better, what lessons you have learned from having SD and want to share with others, and how has SD made you live your life more boldly?

The link to the contest can be found here: http://www.dysphonia.org/support/personal.asp

Of course, I would appreciate if you could toss in a vote for me :). I am way at the end, though (as Arwyn Yarwood-Hoeppner), as this is an alphabetical list! Curse my choosing to hyphenate my maiden name and married name together! However, I encourage you to vote for any and all that you feel embody the theme well.

Deadline is January 5th, so don't put off the voting too long!

What's going on here?

Interestingly enough, my voice has been good for weeks now. Of course, now that I've said that, I noticed that my throat has tightened up a bit today, but I haven't spoken with anyone yet this morning to verify that it's worse again. The mornings are usually a quiet time, as I am often working before my children wake up, and my husband is either at work (he will often leave before I get out of bed) or he is sleeping.

I had a friend coming over more often lately, and she had commented the other day that my voice is the best she's heard it been for years. This friend of mine I've known since sixth grade, and we've seen each other at least once a year since I got SD in 2003, spoken more often than that on the phone, and definitely a lot more than that this year because we live within four blocks of each other. However, it's still infrequent enough that it's not a daily, or even weekly thing. So, it means something if she notices it, as she's not used to hearing me every day and she takes notice of what I sound like every time.

Normally, I'll have my voice be better for a little while. Maybe it'll be good for a few days, or sometimes up to a week, but then it'll be bad for a while again. I remember, back when I was working retail, that I had a period of time where my voice was barely above a whisper for over a month.

The thing I've noticed lately is that not only have I been able to continue a conversation for well over an hour without my voice cutting out, but I've also been able to yell to someone who is in another room or upstairs. That's a huge accomplishment for me. Now, I haven't done anything different than normal, so I'm not sure what caused this to change. My voice is typically at 40-60% on a given day usually, but I'd say it's been a solid 85-90% lately with just the occasional period of my voice cutting out. My voice has been so good that I've considered doing some extra work on the side, even working with the public.

But then I thought about that. What if I would get a job on the side? When interviewing, would I even want to mention that I have SD? If I did, and I wasn't showing symptoms, then it might seem strange. But if I didn't, and then my voice did (as it would eventually) get worse while on the job, then that could make me look bad for not mentioning something earlier.

I'll probably just look for another job from home or one that doesn't involve much talking :).

Sure enough, my toddler just came down the stairs, and as I was speaking with her, there my voice cut out with, "yes, of course you'll be getting lunch today." Ah well. It was nice when it lasted!

I've discovered MySpace Karaoke...

...and I suck at it. Rock Band, however, I usually do pretty okay with. It's probably because Rock Band tells you what your pitch is, and with MySpace Karaoke you just kind of do your own thing.

One of the interesting things about spasmodic dysphonia for me is that it does not seem to affect my singing too much. However, I overcompensated for my voice cutting out so much, and I became soft-spoken. My friend Julie says that was one of the things she always noted as a trait, though, so I guess I became worse? After having many years in chorus, I can say that it a powerful voice is more suited for singing than a whispery one. Even in chorus I had to project more, so I can imagine the field day my instructor would have with me now.

I used to be okay at singing. I wasn't one of those types that got into jazz choir (we had Swazz at school--swing+jazz), and I was really too shy to really do much in the way of auditioning. If we had a final, I usually took the option to write the essay instead of going for a solo. My voice had been described as "sweet" but it wasn't really anything that would get me anywhere.

Up until recently, I would not sing in front of my husband. I would sing to my kids, but not in front of him. Then we got Rock Band for the Wii. Prior to that my husband had gotten the American Idol karaoke games, and he was always confused at how I could get platinums, and even diamonds, on many of the songs on there--all while he wasn't home. So, a couple of months ago, I sucked it up and sang in front of him while he played the guitar on Rock Band. He thought I was good. Now, I don't think I'm good, but tolerable. At least, I don't make any of my cats yowl in agony. But it meant something that my husband said I was good and he wasn't being sarcastic. This, coming from the guy who said that the thing that he first noticed about me was my voice and what I had to say (prior to getting SD), made me feel a little gushy.

I've considered taking singing lessons when I actually have a disposable income again. I need to build up the power behind my voice. When I can' t hear myself talk over my toddler, I think I need to do something about it. I don't expect to ever get back the range I used to have, but I would expect that maybe I could project better. Projection was something that was focused on with my speech therapist a couple of years back, and I realize that's something I need to work on again.

Back to your regularly scheduled program

I know it's been a while since I said this would be my next post, so here is "Therapy and How I Got a Job."

I went to go see one doctor, who officially diagnosed me with SD in March of 2006, which involved the scope and tearing up the bottom of my tongue. He did some voice therapy with me, which wasn't too extensive and not very helpful. When talking with him and doing some research online, I found out some people with SD have gotten disability and help through their state's vocational rehabilitation center. After finding that out, I set everything in motion.

When trying to get help on the state and/or federal level, things will take a long time. I applied for disability, which I was only trying to get until I could get a job. I didn't have a lot of training in anything, and I already tried retail, as I have talked about here, and it didn't really work well for me. if you can't talk, you are kind of out of luck with many jobs. The way I was trying to get a job was through training through Wisconsin's Division of Vocational Rehabilitation. Your state should have a similar thing. It's involved with the Department of Workforce Development. I had interviews both with Social Security and with a counselor at DVR. At DVR, we set up a plan. I would get training in a field I wanted to be in, and then we would set up a work plan. If I needed it, I could have gotten an amplifier for my voice. I was also to get voice therapy sessions. My plan was to get a job in medical transcription, since at the time I was mother to an almost 2-year-old and pregnant with my second, and most MT jobs can be worked from home. As these services are free to those in need (I was put on the second tier of disability, which is moderately disabled according to them), you are put on a waiting list. Those with the most severe disabilities get help first. I was told I was on a six month waiting list.

While getting help from DVR, I was turned down for disability. This was no shock, but a little disheartening. I applied again shortly after, this time with more information from a different doctor.

In the fall of 2006, I went to a more specialized clinic for SD. Even though these doctors had more experience than my prior one, I was still only the second case or so that they ever had of someone with the abductor type. I was also one of the youngest. My doctor said that the youngest he ever had with SD was 17 or so, I think, and at that time I was 25.

My new doctor was much more beneficial than my last one. The voice exercises worked better for me. It was determined that I had a mild case of SD, and with minimal voice exercising I was able to get it to almost a normal speaking level. This was, of course, when I pushed myself to stop talking in a softer tone. I don't know what happened, and apparently it was subconscious, but over the time I've had SD I've become softspoken, probably to minimize the voice breaking out. You can hear how soft I am in my videos.

Late summer I also I got off the waiting list with DVR. My wait was more like five months instead of six. I was able to get training for medical transcription through a local college, both at the campus and online. This was the best thing for me since I had the toddler and was pregnant. I had to take a break from school because I had the baby in December. However, I did graduate in March, which was ahead of schedule.

I was once again turned down for disability. Once again, no surprise there.

After I finished school, I started applying places. The problem with medical transcription is that everyone wants experience. I didn't have that yet. So, I was able to get help through a job placement specialist. She got me work experience at a local hospital. After a few months there, my boss suggested I work for a company that does work for that hospital, and I've been there since October of 2007.

Effects of sickness and physical factors

This will be a relatively short post, no video. It was prompted today by my visit with my grandfather, who is 90.

My grandfather has been hard of hearing for longer than I've known him, due to his stepfather "boxing his ears" which was a form of punishment that involved hitting both ears (not sure if it was simultaneous or not, but it was done to both sides). Not really a punch--it involves the palm of the hands instead, and hitting the ear like that can cause hearing issues if done just right or repeatedly. So, because of this punishment from his stepfather, he has needed hearing aids, headphones, or whatever else to help him hear in different situations better.

Sometimes he doesn't wear the hearing aids, like if he uses the phone. It's difficult for him to hear an average person speak, but you combine my voice and his being hard of hearing and it's a bad situation. He didn't have his hearing aids in today when I first came over with my girls, so he had to put them in while I was talking to him. Later, my daughters got rowdy, and the screaming was painful when he had his hearing aids in. It's not a good situation for him to be in, and it's a difficult one for me to adapt to.

My voice is softer than it usually is right now because I have a cold. If I have an illness that affects the throat, my voice will generally be affected. This can involve mucus drainage, a sore throat, or even throwing up, which I suspect is due to the stress on my throat.

I can also be affected by something physically hitting my throat. I've touched upon this before. The time when this is most apparent is when one of my daughters will accidentally headbutt me in the throat while picking her up or if I have a cat decide that my throat is a good sleeping place.

Trauma to the outside of the throat can be just as harmful to trauma to the inside of the throat to me. Screaming makes me lose my voice, as it does for many people.

I'm back!

I know I've been gone for a while, but July totally sucked. We had to finish moving out of the apartment, and I had three family members in the hospital that month. At least they were in at different times!

I've made a new video. This video showcases how bad my voice can get when reading out loud. I'll update the rest of the blog in time, but I thought I'd make the video today to do something a little different. It's one thing to write about SD, and another to hear how it affects someone.

I'm #1!

Ok, just a quick post here. I've moved into my new house, but we had a lot of fun because we got hit with the flooding. I actually had about 3 feet of water in my backyard and about 1 1/2 feet above my storm drain at the end of the driveway. So, not only do I have the normal packing/unpacking routine, but I also had to do some flood prevention stuff, too.

Out of curiosity, I googled "spasmodic dysphonia awareness" today, as I was curious what kind of ribbon represents that. It turns out the video in my last post is the first hit on Google. Who would have thought that?

It's Dystonia Awareness Week!

And I've made a quick video. It's not very good, and the audio isn't great, but here you go.

I'm not dead!

I'm just really, really busy. Work has exploded with reports that need to be typed up, and I'm closing on a house on June 4th, so my husband and I have been attempting to pack when we both aren't working. I lost a lot of packing time due to being sick for close to a month. It started out as a cold, then the flu, then I was ok for a few days, and then I seemed to get the flu again. I've been healthy now for close to a week, but I hope saying that didn't jinx things!

I will update with more of what happened when things settle down a little bit here.

Discovering SD

Years came and went, and I knew no more about what I had than when I first started having problems. All I could tell people was that I had a voice problem and I couldn't really talk much.

By January of 2006, I had just gotten back in touch with a friend of mine from high school. We were talking about our lives, and it came up that I was having difficulty speaking. She asked me what it was, and I told her that I quite honestly had no clue. That prompted me to look it up.

I searched the Internet by looking at symptoms. Most sites had a list of similar disorders and conditions listed together, but one stood out in particular--spasmodic dysphonia, specifically the abductor type. I read a bunch of different sites and looked at the symptoms. Everything seemed to click. I was pretty sure that it was what I had.

One of the sites, I can't remember which, had a list of things that people with SD have trouble saying. I was sitting on the couch and my husband was sitting at his computer when I was looking at this list. I read things out loud to him, and told him how I thought that this is what I had, and it had a list of words that I couldn't say. I told him it was ridiculous, though, because I can say pu...and then the word cut out. I was attempting to say "puppy."

I then contacted my former speech therapist and got an appointment scheduled. I told him what I thought I had, and he agreed that was a good thing to check for. After some tests and a ripped tongue later (he held my tongue out so far that the skin underneath it tore), I had my diagnosis of abductor type spasmodic dysphonia in March of 2006, nearly three years after the onset of symptoms.

Next up: Therapy and how I got a new job.

Aftermath and retail work

Even though I feel pretty yucky, I probably won't get around to actually doing a little bit of work yet, so I'll write this up :).

So I quit the job at the call center at the end of May 2003. Because I quit my job, I lost my insurance, and then I couldn't seek further treatment. Looking at my reports later from the doctor showed that I was "noncompliant" but I really just couldn't afford to go. My boyfriend picked up the slack in the meantime. That led to a bit of credit card debt that we still haven't gotten rid of.

I applied at a few places and even had a HR headhunter find me. I made the mistake of being completely honest with what happened at my last job, so I wasn't hired at any of those places. Although I despised working through a temp agency, I felt I had no choice, and I once again joined up with one of them. The problem was, I was making decent money at the call center, and I would have liked to have made that again. And my boss through the temp agency was lazy. She never bothered to even try to find me something, so I was jobless from the end of May to the beginning of August. When I did finally get a job through them, I was making about $3 less than the call center, but it was better than nothing.

The job was where I was typing up insurance claim information. It was a government job, and it was funny because just down the street you could work at a private insurance company where you could make even more than I did at the call center. As such, people really didn't like to stay at the job I was at for long, and really only did because of the benefits. Often, people would work through the temp agency and be hired on later through the company itself. I specifically handled disabilities, so I would type in the name, what the diagnosis was, what kind of aid they were asking for (a wheelchair, prosthetic limb, etc). One time I had a guy asking for a penis pump "to save his marriage." I didn't really have to talk unless I had a question, and overall the job was ok, except for one major reason--my boyfriend had a girl who used to stalk him that worked there. I didn't know this at first, but when I was talking to my him about this girl and how obnoxious I thought she was, something clicked and he realized who I was talking about. Luckily, a family friend said she had an opening at General Nutrition Center (GNC) and I jumped on the job. When I told everyone I was quitting, I explained that I found out that my husband had a girl who stalked him that worked there, and I didn't think it was a good situation to be in. My boss glanced sideways at the girl, and I laughed and replied yes. Everyone understood.

September was when I started at GNC. My boss understood my voice problems, and she made sure that I only used the phone when I absolutely needed to. We were supposed to call out to Gold Card customers to remind them of Gold Card week, but she did all of that herself instead. Subsequent bosses would ignore this.

At GNC, we had many elderly people come in, and many were hard of hearing. Sometimes they would get mad at me if I had a particularly bad voice day and I was talking in a whisper. There wasn't much I could do at this point, because I didn't know what I had. A couple of other customers would whisper back to me when I started whispering, and then laugh afterwards. They didn't think it was so funny when I explained that I had some sort of voice condition. The job itself was easy enough, but dealing with the public when you aren't sure of when you will have a voice is hard.

I went through a couple of management changes because both my boss and I got pregnant while at the job, essentially at the same time, and my boss left on maternity leave for quite a while, where I came back after 6 weeks. It was while I was pregnant that I got married and got under my husband's insurance. During this entire time, though, I was more focused on getting the care for my baby than finding out what my voice problem was. My subsequent bosses didn't care that I was hired with the intent of not really using the phone, so any time I had to make calls out to Gold Card customers, I lost my voice. To this day, I still will lose my voice if I talk a lot.

I spent nearly two years working for GNC, but that was including maternity time off. I quit GNC after finding a decent work-at-home opportunity and because I didn't want to deal with the regional manager anymore, our commission rates went down, and the store was turning into almost all sport supplements instead of a good mix of herbs and sports, and I really couldn't care less about sports. My new job was writing and critiquing online personal ads from home, or anywhere I could access my account. I joined up in November of 2004, just shortly after I had my first daughter, and I actually got work in December of 2004. I quit GNC in August of 2005. At that point, I was making quite a bit more as a writer than when I was working at GNC, where I was essentially making minimum wage most days. It wasn't that I couldn't sell, as I had been proven to sell in the past. As I said, they changed the commission on us, and a lot of business had dropped off over time. Of course, shortly after I quit, the city's minimum wage requirement was raised by nearly two dollars.

Next: Discovering Spasmodic Dysphonia.

Sorry about the lack of updates

I've gotten hit hard with a cold this week, so I've been pretty miserable. Of course, with this cold that means that my voice has been nonexistent much of the time. Lots of fun when you have to deal with house loan drama and make a lot of phone calls.

It's always interesting that when I lose my voice, my toddler asks me "what happened to your voices?" She doesn't quite understand that it's just voice and not voices yet :). Anyway, it's very difficult to explain to a 3-year-old that I just can't talk. I tell her that my voice is gone, and that it's just a voice problem I have. Sometimes she'll whisper back. I'm much more forgiving of a child whispering back to me than an adult who whispers back to me and laughs about it. I'll go into that later with my retail post.

Emotions and fallout

With the last post, I mostly just went over the facts, but not really how I was feeling emotionally.

When I first got symptoms, there was some confusion. I never had symptoms like that before. I had sore throats in the past, but not anything like this.

It ended up progressing to fear and worry for a number of reasons. I didn't know what was wrong, and didn't know for nearly three years. I was afraid that I was going to be fired, especially because of the company being in a poor state financially. I was worried about how I was going to pay for my apartment and utilities when I was only getting in half of my hours and having a lot of money go towards doctor visits.

Then I felt sad, and upset, and just defeated. My coworkers were horrible to me. A couple that supported me I still keep in contact with, but most were just outright mean. What makes them think they have the right to throw out stuff of mine? I never did anything to them. I was a bit of a loner and not really a team player, but I wasn't outright mean to anybody. I didn't really say anything about anyone else. The coworkers I disliked were the ones that were the meanest about things, so I guess the feeling was mutual. My aunt, who also worked in the office, said that I quit because of a couple of the coworkers, and I guess my boss felt really awful about it, but I don't see how she couldn't have figured out that I had to break at some point with how terrible they were to me.

And what's with my boss just rolling over and letting them treat me like that, and actually agreeing with some things? Why would she think I'd want to cut back my working hours by half? She knew my roommate was deployed and I would have to pay for everything myself for a while. I wasn't a bad employee. As I said, I had used up some sick time, but never went over my alloted p.t.o. hours. I had helped out multiple times for company-sponsored events, and since I knew computers better than my coworkers, I made various guides to help everyone out. My aunt blames things mostly on my boss's boss, who my aunt always had problems with. I think my boss just went with the pack and didn't want to stand up for me, which, to me, is just as bad as being one of the instigators.

Eventually, being upset led to anger, an emotion that I'm still not entirely out of today. It's not that I'm not comfortable with or accept where I am today, but unfortunately, I'm one to hold a grudge. My aunt took me around the office once after I had my first child, and I made it a point to let them know that I still had the symptoms (this would have been 2005). Of course, they were a bit surprised, but I hope that they realized that they made a mistake.

To jump ahead a bit, my dad, who can be a little sue-happy, I think, threatened the company with a lawsuit. As SD can be considered a disability, he figured that he could scare the company a bit, as discrimination against someone with a disability is against the Americans with Disabilities Act. I argued that I didn't know it could be considered a disability at the time, and neither did they, so I wasn't sure how well things would go over. Regardless, the threats didn't work too well, as the company had been bought out by a different one, and I'm sure the new company didn't feel they were responsible for something that happened years earlier. I'll go into my thoughts regarding SD being a disability later.

One day recently when my aunt was calling for some glass from a different auto glass company, my aunt caught my old boss on the phone. That stirred up some bad feelings, and that's when my aunt blamed stuff on my boss's boss.

Next up: the joys of working retail when you don't have a voice.

The beginning

I do have a video for everyone! I made it yesterday, but I want to edit it first. I'll try to put it up over the weekend. Right now I'm pretty wiped out. See, we're moving in a couple of months, and so I have to go through the garage, which had many things that hadn't been touched since we moved four years ago. It'll all be worth it,though, because we're getting our first house :). But let's move onto the story.

In spring 2003, I was working at a call center at the corporate office for a local auto glass repair and replacement chain. I had been working there since May of 2002. Earlier in the year I had gotten bronchitis, and I remembered my boss not really believing it till I brought in the doctor note. I had taken some time off over the course of the past year, of course, and mostly that time was used for sick days or personal days that came up unexpectedly, but I never used up all of my p.t.o. I think it was sort of a case of "what, another thing?" because the previous fall I had ovarian cysts, and I recently had taken off a day when I had to rush my rabbit to the vet, who did, unfortunately, pass away later that day. Still, I was a hard worker, and I was usually a top performer, even being name a top CSR for the month of March.

Things were a little rough at that time. Because the company was facing financial hardship, they started laying off people. One of my coworkers had been fired. My roommate was just deployed to Iraq, so I had to replace furniture and pay for everything at the apartment myself for a short time before my boyfriend (now husband) could move in and help me out.

April 3, 2003. I put this down as the start date in my LiveJournal, but I'm not sure if that's accurate. I had remembered that I was quite happy that my voice went out over the weekend so I could rest and get better by the next week.

April 5, 2003. This date sticks out very well in my head. It was a Saturday, just like it was this year. I was just starting a four day weekend that extended into Tuesday, as that was my 22nd birthday. One morning, my boyfriend and I woke up, and we were talking, and my voice...just kind of stopped working. It was fine at first, but then it started to crack a little bit, and I started to speak in a whisper. I thought that was kind of strange, but I thought maybe resting my voice would help. I think it was that Sunday when I had my birthday party. I have a thing for pirates, and that was the theme of the party, which was before (albeit just slightly) the first Pirates of the Caribbean movie came out. We had Long John Silver's on pirate-themed plates and we watched pirate-themed movies.

At the party, I had to explain to my family and friends about my voice and how I didn't really want to talk at the time. As I said before, my friend Shane recommended lemon tea, which he still does to this day. But this felt different. My throat didn't hurt like it did when I had a sore throat from a virus in the past. It didn't even hurt like it does like when you scream a lot at a concert. There was some pain after trying to force myself to talk in a whisper, but the problem itself was not painful.

I went back to work, and it took very little time for me to progress from talking normally on the phone to talking in a whisper. A visit to urgent care, or at the very least, an urgent clinic visit, was done, and it was determined that had just overused my voice. I thought this was strange, as it wasn't slowly going away over the course of time, and I really had no problems speaking just a few days prior. I just woke up and it was gone.

As time went on, though, it was soon realized that I did not have something that could be cured by resting alone. I had various tests done by several physicians, and I went to a Dean Care speech therapist, who started me on some exercises. He assured me that these exercises would help and that I could get over this condition. I saw him just two or three times total during this time period.

Work was getting very nasty. Coworkers of mine were saying I was making up the voice thing to get out of work. Why they thought this, I have no idea, because why would I want to work less when I have to pay double for things? Eventually, my hours were cut down to about half in the call center, and then I worked in the mailroom for a while along with some odd jobs, mostly data entry work. The mailroom was nice because I didn't really have to talk to anybody, and it was relatively low stress. I remember having a meeting with my boss and crying, saying I didn't understand why people were saying these things about me. She said that they've never had anyone experience that before, so it was hard for them to understand what was going on. She was basically making excuses for their catty behavior.

Even though I was just filling in with the mailroom, I wanted to work there. Of course, the day I was going to see if I could just switch there was the same day that they hired a temp.

Things proceeded to get even worse with my coworkers. I could hear them saying things about me while I was on the phone. I had to constantly bring in doctor's notes on my status, and I was seeing doctors at least weekly for the aforementioned tests and speech therapy. At one point, my boss's boss pulled a huge fit about not being able to have some things faxed to her. This was the beginning of HIPAA officially being in effect, and so they couldn't send health documents to open printers or faxes.

My coworkers were horrible, my hours were cut back. I finally quit at the end of May 2003 after my boss said that she could not give me five minutes to rest my voice and do exercises every hour. I remember that one day I had been cleaning up the stuff around my cubicle, but I was not officially gone yet. The next day when I came in I found the rest of my stuff in the trash.


That's it for now. Look for part 2 to focus more on my personal feelings about this situation. I'll see about getting some media up, too.

A minor change

Just updating quick to say if you look at my posts and think, "Oh, but didn't you say you found out you had SD in 2005? It says 2006 now." Well, it did, but I realized I totally put down the wrong year. I found out I had it January 5th-6th, 2006, and wasn't diagnosed with it till that March. So I went nearly three years without a proper diagnosis, which isn't great, but better than what many others have faced.

So, who am I?

Who am I, and why have I made this blog?

I'm Arwyn, and I just recently turned 27 years old. I've been married since 2004 and have two daughters, ages 3 and 1.

I also have a disorder called spasmodic dysphonia, specifically the abductor type, which I have had since 2003 but was not diagnosed with until 2006. While I have this disorder, I am not THE disorder. It does not define who I am, although it does make things a little bit difficult.

The purpose of this blog is so others with spasmodic dysphonia, young or old, the recently diagnosed or those who have had it for years, can see my experiences. Perhaps the reader could relate, or maybe find some useful information.

And what's spasmodic dysphonia?

If you have it, you probably know the basics. But for those readers who don't, from the Wikipedia page:

Spasmodic dysphonia (or laryngeal dystonia) is a voice disorder characterized by involuntary movements of one or more muscles of the larynx (vocal folds or voice box) during speech.[1] Spasmodic dysphonia is often referred to as SD.

My specific type, abductor, involves the vocal cords being pulled apart, which leaves me talking in a breathy, whispery voice. Adductor type, the more common of the two, involves the vocal cords stiffening and being slammed together, and the person talks in a strained or strangled voice. A person can also be a mixed type, having both qualities. Often, singing and laughing aren't affected, and I can definitely say this from experience. Sometimes I will make a squawking sound so my husband knows I have something to say :P.

Spasmodic dysphonia is thought to be neurological, so something related to the brain and nerves versus a structural problem with the larynx. SD typically affects people around 30-50, but as you can see, I've had it since my early 20s (I got it at the age of 21, three days before my 22nd birthday) and one of my doctors said he treated someone as young as 17, I believe. It is also believed to affect roughly 50,000 people, so it's quite rare. Of that number, less than 10% are afflicted with abductor type--so roughly 5,000 people.

Where the confusion lies, though, is what causes spasmodic dysphonia. When I was diagnosed in 2006, one of my doctors stated that some believe it may be related to bronchitis. I did, in fact, have bronchitis shortly before I got spasmodic dysphonia. Some think it may be hereditary. My parents don't have it, nor did my grandparents, so who knows. I have a cousin who claimed that she went through something similar in high school, but she took voice therapy and it went away. In her case, I think it's probably related more to a muscle tension dysphonia, as she does not have problems today, and it sounds like it was a one-time deal.

Is there a cure?

None yet, but there are ways to treat such as voice therapy and Botox. I've never tried Botox, and I don't care to. Voice therapy can work wonders. I can speak in a higher or lower voice and my voice will be clearer, too, but I only use that for extreme circumstances when I can't really do exercises on the spot. You can also see if you can get a voice amplifier, which isn't a way to treat, but a way you can manage a bit better.

Despite what my friend Shane seems to think, lemon tea won't do a thing. He recommends it every time he's around when my voice goes out on me.

Next post: How everything began, and I'll post some sound clips and/or videos.

An introduction

I've been living with abductor type spasmodic dysphonia since 2003. However, I never really kept a separate blog for my experience dealing with it. I've been messaged multiple times on my LiveJournal from others who have spasmodic dysphonia, so I thought it was time to give my condition its own spotlight.

In the days, weeks, months ahead--whenever I feel like it, anyway, I'll go through my old LiveJournal posts and post relevant information here. I'll also continue to update with current happenings related to the condition.

Having just passed my five year anniversary of my getting spasmodic dysphonia, I can tell those who have been newly diagnosed with it or who feel trapped with it this: You can live a productive life with spasmodic dysphonia. I believe that depression and confusion is part of it at first--believe me, I've been there--but there are resources to help you. Be sure to do your vocal exercises, and if you are struggling with finding a job that will accommodate you, see what your local Department of Vocational Rehabilitation (your state should have a similar department) can do.