Tuesday, June 3, 2008

Me, Talking

Okay... the, uhhhh... vain side of me does NOT want to post this. It is hard for me to actually see myself talking, not to mention my hair is flat, I need to go on a diet and where the heck did those lines come from?

Because I have low volume and am "breathy," it may be possible that I am actually a combination. When they scoped it was obvious that the area around my vocal chords is actually spasming and closing shut over the chords. Talking requires a lot of effort on my part and it is as if I am having to speak without breathing. I know there is a lot out there about those with SD not breathing properly and that being a big part of the problem, but... I went for speech therapy with a speech pathologist for several months and she and my doctor both said that there was no point in continuing. I do breathing exercises often... I just can't do it while talking. Trisha has had some success with speech therapy so I am wondering if I should try going back???

I actually stopped getting the botox injections months ago. I have only had two successful injections out of the... gosh, 10-15 that I've gotten. I am getting to where I may try again... or try something different. I don't know. The problem is that no one really has the answer.

video

The squawking in the background is our son's quaker parrot, Paco, the terrorist.

I really had to strain to talk as loud as possible because the camera wouldn't pick up my voice. It isn't that hard for me to speak one on one in a quiet room. The problem is background noise. It takes very little to drown out my voice.

38 comments:

Just Me said...

Brave of you to let go of pride and post yourself.

I can see that speaking is a struggle, but I could understand you, and I think you sounded okay. Yes, I can see where you'd be frustrated in noisy settings.

You're a very pretty lady, too. I wish I had flat hair!

Just Me said...

That's "I wish I had YOUR 'flat hair.'"

OKGardners said...

You are a brave and beautiful person. I could understand you just fine. I'm sure certain conditions make it hard for you to be heard.

Speaking of FLAT (noodle straight) hair ... I made an appt. about an hour ago to get a body wave (not a perm) - so my hair will "do" something besides hang. It will make my daily routine go better and the curling iron won't have to be used so much. You might try a body wave... Just a thought.

Take care of yourself and stay sweet.

Betty in Oklahoma

Just Me said...

I was "blessed" with naturally wavy hair. It's always been on the coarse side.

Now that my hair is turning gray, it doesn't obey any of the old rules. 90% of the time it's going wherever it wants.

I tried coloring it (with one of those gone-in-28-washes types) that covered little of my gray and left my hair brittle and dry.

I am so unhappy with my hair. My daughter's is straight and silky and naturally streaked with blonde.

We always want what we don't have, huh?

MUD said...

Go for your strength. Write often. We have two Cocateils and they drive me crazy when they get to squawking at the birds outside. MUD

Renee in Seattle said...

You sound wayyyy better than I imagined... and I know that you probably don't see it this way, but think of it, you NEVER yell at your children, and that is probably a good thing.

Also, about the posts on the SD listserv, 6 beers does in fact cure SD, and Turettes, and severe acne, bad hair, and tremors, and a slew of other disorders, because after six beers, you just don't care.

noble pig said...

You are a wonderful speaker and a beautiful person. You look and sound great!

Chris H said...

Awww you are so cute! And I could understand you just fine. Good on you for being brave enough to post it.

Trisha said...

You Rock Girl!!!!!

I am so amazed at your gumption with both the recorded talking - which sounds good by the way! - and the video. I think you looked good! Better than I would!

You are a really amazing woman and I am so glad that I "met" you via the blogosphere!

Junebug said...

I think you look and sound so pretty. I am sorry that it is difficult to speak. I know that would be frustrating since it is hard enough to communicate with people and get them to look at you and really listen without adding a speech difficulty to the equation. I am also glad to know that the noise in the background was the bird and not you gasping for breath. Gee! I hope you can find an answer for this.

April said...

Okay, first of all...you are beautiful! And your voice sounds sweet, much better that Diane Reames. I know that was very difficult for you to film. I get frustrated when I lose my voice for a few day, so I can't imagine the battle you take on everyday. I'm glad you explained the bird in the background I was wondering what the??! I sure hope modern medicine can find something to aid you soon.

Laura ~Peach~ said...

I could understand you , but like others I can understand where any background noises or trying ot be heard in a croud or situation could be super frustrating... you are beautiful flat hair and all... thank you for putting that video up :) HUGSSSSSSSSS LAura

AmusedMomma said...

Bravo, brave friend!

I have to tell you folks that background noise does indeed drown out Miss Coffee Bean's voice. I have to go to a quiet room in my house to hear her when we speak on the phone, and I have to concentrate on listening to her. I can imagine her frustration because I know the effort I put in to listening. She has to put in so much more to speak.

But what she has to say is very real, vital and important! And her humor communicates her thoughts in a way that makes things less stressful, more poignant and accessable.

I'm so glad we're friends!

Flea said...

It is so good to see you and hear you! A simple picture just doesn't do you justice. You sound like someone with a very bad sore throat. But you're beautiful! I hope that in returning to some of the treatment you find yourself responsive. :)

Rick said...

Hey Bean, Bean, Bean!!! So nice and interesting to see the video. I agree with the evaluations of so many others, not only do you sound nice, but you look great too. I reserve comments on the hair - I'm no hair expert. I do want to ask if you feel any kind of pain when you talk, and do longer conversation wear you out?

I'm putting a comment on the above post too - want to be sure I'm in on the contest. Then maybe I can make it to level two and three. But... are you going to let the bird pick the winner again?

Alison said...

I am so proud of you....I know that was a leap of faith, and was very difficult. To be perfectly honest with you, I thought your voice would be "worse" than what it actually was...I could understand you just fine. In fact I have a friend who talks like you, I have never asked her why, I think I will now, I am curious!!

Alison said...

Oh...I almost forgot...you are beautiful..inside and out!!

Becky said...

Wow...I miss a day...and boom. You have a zillion things for me to read. :)

I am proud of you for your transparency with all of us. I could understand and hear you just fine...but how frustrating to always have people saying,
"What?"

My stepdad has hearing aids and is often asking me that and it is frustrating for both of us. ;)

You, as April said, are beautiful...and would fit right in with my wacky group. :)

The Maid

Ms Picket To You said...

your truth inspires me.

Kathy said...

Excellent! You are gorgeous and sweet! I could understand you just fine on the video. It does seem like it takes much effort to speak. Thank you for educating me, I had never heard of SD before you explained it on your blog.
(It was funny to hear your little terrorist in the background.)

Jenni said...

I had never heard of this before, though after watching the clip, I wonder if I have met a few people who have it. I can understand how it would be a very frustrating thing to have, but your voice is not alarming or anything to be embarrassed about. It's a wonderful thing you've done to post that clip in order to raise awareness and help other people understand. And you are absolutely beautiful! You have such a gorgeous smile and eyes that smile right along with your mouth.

pam said...

You are stunningly beautiful, I'd give a lot for your 'flat' hair too. Over from Flea, and I too have never heard of SD.

Brenda said...

I know living with this disease must be so difficult. I was so excited to hear your voice though, that it was beautiful to me. And what a knock out smile at the end. Your gorgeous.

Mabunny said...

Congrats to you K.J, for posting this. I kind of understood from what I've read on your blog about S>D, however , couldn't quite think of what it sounded like. Thank you for opening yourself to your blog friends and sharing that with us.
(btw your hair and everything looked just fun), remember we are our own worst critic!

Deborah said...

I agree with what so many others have said...you are beautiful and your voice is lovely and soft. I know it must be frustrating for you, I get frustrated with a yearly bout of laryngitis.
But God has given you a gift in your writing, and your sense of humour, keep using them for his glory!

Dancing Shoes said...

Hello! I'm visiting you from Ree's site!. It's good for us to learn something new every day and today I am appreciative of your video giving me insight on something I had never heard of before.

Natalie said...

The frustration that you live with from day to day must be tremendous! A big hug for you for all that you have to deal with!!!

sheshe said...

Thanks for having the courage to post this. I have generalized dystonia and had Deep Brain Surgery over a year ago. It gives me about 50-60% relief, thankfully, but I still have a lot of movement. It never occurred to me to post a video...Maybe I will consider that so folks can see even better what different forms of dystonia are like and how the neurostimulation can help.
Blessings
Ramona

Paula Yaussi said...

Blessings to you for being so brave. You have educated me! From one flat haired gal to another . . . you look fantastic, you sounded clear and concise, and I couldn't see the lines!

Blessings!

Paula in Kansas

Debra W said...

Hi KJ,

I just watched your video and I wanted to tell you, once again, what a beautiful smile you have. I hope that this week brings lots of attention to your illness. I am so sorry that you have to live with a chronic condition. Like TJ said, it's difficult to understand what those of us who live with chronic illnesses must go through every day.

Big hugs,
Debbie

LGGorman said...

I'm here from PW's blog. You have done a great job with yours- very informative. Thank you for doing this.

I like your hair too!

thislittlepiggy said...

You are a brave and lovely woman. :o)

BOSSY said...

Bossy hopes you raise the awareness you need -- you are awesome.

cza said...

Your hair is lovely, I should have as much volume to my hair as you do :-) Loved the picture of the graduation gown freshly ironed, I have done that myself to a nylon fabric I was sewing. A man who picks up an iron... wonderful.
Just found your blog today and loved the song, My Redeemer lives. Who is the performer? Could that be posted on your blog?

AlaneM said...

I think you sound beautiful but I understand why you don't think so. I can only imagine how frustrating your condition must be.
God bless you for being so brave, that takes real courage!!

lisa marie said...

I was hoping you had a bird too. :) I'm glad you posted the video, I had never heard of this before. Jennis in KS sent me over. :)

Anonymous said...

I just listened to your post, and I think you sounded good. I, too, have ADSD, but my voice is lower and sounds gravelly. It's such a struggle having this disorder and can be very isolating. I think what is so frustrating is that I have two daughters (9 and 11) and they look to me as a role model and it's embarrassing sometimes, especially if they have friends over and the looks on their friends faces when I speak. I think you were very brave to record yourself but I really thought you didn't sound bad and it helps knowing there are others out there and I'm not alone (although I don't personally know anyone with this disorder).

Angela said...

I've been meaning to come and listen to your video...finally did...

Thanks for letting me know that it was your son's bird that was doing that noise because I kept wondering if that was coming from you..(daaa)...

I think this is awesome that you did this Coffee....people need to be aware, know there is this disease out there and help get more funding to support those who suffer from it...((hugs)))