Confusing replies on YouTube

From time to time, I will check what posts have shown up on my YouTube videos (the ones also posted in this blog) to see if there are any comments that I should respond to. The last two comments left were related to stuttering. One guy asked if people have psychological effects from SD. He said he didn't think it was such a big deal, as he is a stutterer, and some people who stutter feel afraid to go out into public and even commit suicide. I was a bit baffled about what kind of response to give. First of all, I found it incredibly offensive he was playing the "my problem is worse than yours" game. I've been a stutterer, too, but not nearly to the degree that some people are. I still stutter occasionally. Although I found the original comment a bit inflammatory, I politely explained to him that perhaps before assuming that SD isn't "a big deal" he should read stories from people who have it. I explained that it is an incurable neurological disorder that is considered a disability. His following reply was "Yeah, you're right. this is a big deal, compared to stuttering, since you guys can talk and we can't correct? (rolls eyes)." I'm not entirely sure he even listened to this particular video, at least all of it, because my voice cuts out terribly while I am reading the book. Sometimes we can't talk. I have my husband order for me when we go out to restaurants. I try not to put myself into situations where I can't be heard, like a concert.

A second person made a comment about stuttering. He was not nearly as aggressive. He asked if stuttering was a symptom, and he said he didn't know why people make a big deal about SD, as people who stutter have hard times too. I explained that no, stuttering is not a symptom. What he is hearing is my vocal cords being pulled apart, but I have had issues with stuttering in the past. I also stated that people aren't making a big enough deal out of SD because it's very little-known.

I shouldn't be too angry about this, but I just don't understand making posts on videos about how much worse your disability is than the person who posted the video. Does it matter? Not once did I claim that stuttering wasn't a problem. However, it's a problem faced by many more people than SD (millions compared to about 50,000), and it is something that is a well-known issue. SD is not, and the point of the videos was to bring awareness.

My voice is so-so right now. I'm over my cold, so I don't have that bothering me as much. I did make another video, which I will be posting here soon. Followers of this blog already know much of this information, but those who have only seen my videos do not. I guess you can view the video as a kind of refresher.

Well...

I'm just about over my cold, but yesterday was the worst my voice has been in months. I sounded like a boy going through puberty! My voice was all over the place. It squeaked, cracked, and cut out all night. Normally my voice doesn't have too many issues. I have a mild case of SD, and it is usually pretty good. Yes, I talk in a softer voice to accommodate the breaks, but overall it's okay. But yesterday was the first time in months that it cut out constantly like that. Hopefully it's just as a result of the cold and not because it's actually getting worse. Only time will tell.

Update time

Thanks to all who voted in the NSDA Share Your Story contest! Congratulations to the winners!

I've been pretty MIA from this blog for a while, I know. I tend to go absent during the holidays anyway, but my husband's grandfather died on December 26th, then recently we've all been sick with colds here. The cold has, of course, had an adverse effect on my voice. When I have been able to talk, I've had a very low, weak voice. The cold is mostly gone now, but I've still had a really scratchy throat.

I've recently taken a job doing in-home parties on the side. It shouldn't be very often, but I've been concerned about how my voice will hold up sometimes. However, as long as I don't really stress about it, I think I should do fine. A friend of mine has noticed when I go to the gym my voice gets worse. I assume this is due to the extra stress put on the throat by breathing harder and more frequently. She also noticed when I get emotionally stressed it my voice cuts out more. I knew about the latter, but I never really thought about the former.

Otherwise, I don't really have a lot to update with. I'm not going to speech therapy, I'm not getting Botox shots or anything...I'm just doing basically the same thing I have been for a while. Which is good, I suppose. Don't need the boat rocked too much :).

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.