Why she's my "QW"
 

Some may or may not have noticed my frequent references to QW, my wonderful wife of nearly 29 years. QW stands for "Quiet Woman," a nickname graced upon her by a dear friend in college, way before we married. She was quiet and soft spoken, often to the point you'd hardly notice her presence. Our friend never knew how precient his gentle tease would be.

Several years after we married, QW began having problems swollowing at times. She'd suffer bouts of apparent laryngitis, without any of the usual accompanying cold symtoms. She's go months barely speaking above a whisper, regardless of how she tried to force things.

Repeated trips to a doctor failed to identify the cause of her problem. One specialist even accused her of faking, telling her to just stop this nonsense and talk normally. When another specialist at Henry Ford Medical Center, using an otoscope, witnessed her larynx dangling flaccid, with absolutely no tension on the threads in her voice box, he claimed that she must be doing that on purpose, as impossible as that sounds.

We finally hit upon an enlighted care giver who could put a name to QW's malady: Spasmodic Dysphonia. It's a nuero-muscular disorder, believed possibly to be akin to Parkinson's Disease (we have witnessed, years passing, QW's mother suffering an increasingly severe case of Parkingson's-like tremors, although doctors claim that she doesn't have full blown Parkinson's). It's believed to be genetically transferred, but we have no surviving relatives of my mother-in-law to observe for similar traits. We have no clue whether we've passed this gene to our three children. We pray they have been spared.

There is no known cure for Spasmodic Dysphonia. A current popular treatment is a Botox injection directly into the larynx. This paralyzes the throat muscles for up to two weeks, making swallowing almost impossible. After that, there are 2-3 weeks of relatively good voice and normality. QW refuses to even consider this course. I don't blame her. Besides, treatments cost hundreds of dollars for temporary relief, and insurance companies suck.

There's also experimental surgeries to rerout the nerves to the larynx, with no guarantees of success... you either get your voice back, or lose it, possibly forever.

TO THE POINT::::

ABC News is broadcasting a feature on Spasmodic Dysphonia during it's Medical Mysteries program, this Tuesday, August 19th at 10:00 pm EST (that's tomorrow night, as I type this). The program focuses on Scott Adams, author of the Dilbert comic, and his struggles with the ailment. I'm hoping that they mention some of the other prominent figures who suffer, such as Robert Kennedy, Jr., hydroplane pilot Chip Hanauer, National Public Radio host Diane Rehm, to name a few... and my beloved QW.

We have suffered a lot of social and health related anxiety over the years. I've alerted my large family to watch the program. With all of their love and tolerance over the years, it's obvious that they really can't begin to understand... to relate to... what QW has had to deal with. I'm hoping this program can help.

I'm inviting all of TFP to watch and learn. It's a weird, stressful way to go through life. I'm not the sufferer, just a one-man support group, and my life gets out of whack quite often.

I'll share their web address, and any other info I can to those with an interest:
NSDA: Spasmodic Dysphonia


If nothing else, know that when I refer to my QW, I do so with all the affection I possess.

Thank you. I'll watch with full-attention to better comprehend the affliction.

thanks grumpy..

can it be viewed online?

It is ABC-TV broadcast in the states. I haven't found anything to indicate they'll be streaming it. Here's ABC's online "teaser" though: ABC News: Medical Mystery: Strangled From Inside Out

If they post a video after the initial broadcast, I'll post the link.

Thanks for the interest. A raised awareness may drive research.

I will try and catch this, grumpy, and best wishes to you and your QW in getting through this.

Diane Rehm has spasmodic dysphonia and still hosts her show. She sounds best right after treatments.

Dilbert creator Scott Adams also has it. He's a new agey kind of guy and has his own excercise routine to control it.

RFK Junior als has it.

Been pondering....

Is there anyone here with the technology and the savvy to capture the segment and post to YouTube, or somewhere?

It's way beyond my capabilities.

I was planning on watching that show anyhow, but now I have more of a reason too. :)

I've got it queued up on Tivo. Once there I can edit out the proper segment and post it.

Thanks, Cyn. And everyone who read this post, whether you responded or not, we really appreciate it.

SD is not a physically painful condition. Just some discomfort, and a lot of frustration. We make the best of it. During her worst days, QW communicates with American Sign Language (I'm not that conversant. She and the kids have animated conversations while I sit relatively clueless... there's a "dumb old dad joke in there, somewhere) and a dry erase board. She actually attracts quite a bit of attention when she whips the board out in a restaurant, or at a family gathering. She's a pretty cool lady.

Thank you for sharing this. *hugs*

I watched the show last night. I wish you the best of luck with whatever options you guys go with.

It is uploading right now. I'll post it later tonight when I get home, probably late, if it's too late I'll do it in the morning.
-----Added 20/8/2008 at 11 : 37 : 16-----
ScreenItExpress.com :: primetime - medical QW

Thanks for setting that up, Cyn.

There were interesting stories on that show, though I thought "you make the diagnosis" was a rather lame way to try to hold the audience, with the Olympics beaconing from the channel next door.

The producers have my sympathies. This is tough stuff to present. However, I'm less than thrilled with the way they told the SD story. What they portrayed were actually botox success stories, while in reality, the treatment is not as universally successful as the impression they left. The side effects were ignored, and really severe cases weren't introduced.

It may be my frustration talking, but I don't believe they did any real deep research on that story. I'll watch it a few more times. Maybe my attitude will modify.

I'm grateful for the good wishes, everyone. This has just been absorbed into our lifestyle by now. We've managed to not let this slow us down one bit. Unless something major, besides the botox or nerve surgery, develops, we'll just keep on keepin' on! If you ever meet QW, bring your reading glasses!