Spasmodic Dysphonia's topics - tribe.net

Merry Christmas!

Trisha — Wed, 24 Dec 2008 15:11:04 GMT

Dean-

I just wanted to wish you a Merry Christmas! I havent' heard from you for quite a while and so I hope things are going okay for you.

Trisha

posted in Spasmodic Dysphonia - 0 replies

SD Video on the News in Denver

Trisha — Thu, 03 Jul 2008 14:26:22 GMT

Hey!

If you didn't see it on the ABSD bulletin board, there was a story on the Denver news about SD. Here is a link to it.

http://cbs4denver.com/health/botox.spasmodic.dysphonia.2.761720.html

I thought it was interesting and it is good that word is getting out!

Trisha

posted in Spasmodic Dysphonia - 3 replies

Feedback wanted

DeanSF — Mon, 07 Jul 2008 01:37:53 GMT

Well, I finally wrote up a description of SD for my new SD blog. I would appreciate your input on the accuracy of my description. I know less about ADductor SD than ABductor, so my description of ADSD is briefer. I also don't expect that my write-up is entirely accurate, as it seems that the way in which SD manifests is very individual. My description of ABSD is based mostly on my personal experience, and may not be accurate for everybody.

So, if anybody has the time and doesn't mind checking it out and giving me honest feedback, I'd really appreciate it.

http://voicedisabled.blogspot.com/

Thanks very much in advance, and I hope you all are doing well! :-)

posted in Spasmodic Dysphonia - 2 replies

SD Bloggers

Trisha — Wed, 04 Jun 2008 02:35:46 GMT

Hey Dean and fellow tribe people - check out the fun on the SD blogs for Dystonia Awareness Week - which is this week - by the way. There is a contest at Coffee Bean's blog and a good video of her talking. Arwyn also has a video of her talking. What brave women. Check them out through my blog at
http://inmydreamsicantalk.blogspot.com

Hope everyone is having a good week!

posted in Spasmodic Dysphonia - 4 replies

How is everybody?

DeanSF — Thu, 19 Jun 2008 07:11:37 GMT

Just checking in to say hi, wondering how you're all doing.

posted in Spasmodic Dysphonia - 4 replies

Hi y'all, it's been a while since I've posted here

DeanSF — Mon, 30 Jun 2008 11:19:07 GMT

So I thought I'd repost something I posted elsewhere about my day yesterday, because SD figures prominently into it. The post is between the lines.
---------------------------------------------------
Well, I *did* go to Faerie Village, just before 6pm, and it was crazy, crowded, noisy, annoying, cliquey, and I saw no one I know except my friend Hugh. And it was so loud that I couldn't even talk to him with my mouth pressed against his ear (for those who don't know; I have a vocal cord disorder). I'm normally eager to meet new people, but in this situation, it was impossible.

When it was first created, I thought Faerie Village was supposed to be sort of a sanctuary...calm, in "nature" - some grass and a couple of trees, etc.

I ended up leaving and going to the Citadel, which was very calm, relaxing, and friendly.

Missed Leather Alley; it was shut down by the time I got there.

Oh, and after the Citadel, I bumped into Suppositori Spelling (actually, I *nearly* bumped into a couple of guys who were trying to talk to Suppositori while she was running off down to Truck). She was telling them about her show at Truck, which I had forgotten all about -- I love Suppositori and live right near Truck, so I decided to go there after a brief stop home.

But it was the same deal there: too crowded and noisy; everyone was with friends, I was the only one alone and couldn't talk to anyone. I enjoyed Suppositori's first 2 performances; but they were scheduled with 30 minute breaks between them, and I wasn't going to stand around with no one to talk to for hours to catch all seven performances.
---------------------------------------------------------

I'm still very much a hermit because of SD and the concurrent lack of friends, but here was an example of my making a valiant effort to go out, be social, and have fun on a day that was supposed to be a holiday for me.

My inability to talk at the two noisy events got me down - they got me down more on the crowds than on myself. But it's a very lonely feeling to be standing alone in a crowd, surround by people talking, laughing, smiling, having a good time, and I can't join in because my voice is inaudible. Especially lonely because I am single, and here I was in two places surrounded by other gay men, with no ability to strike up a conversation. Meanwhile, that's what everyone around me is doing.

posted in Spasmodic Dysphonia - 2 replies

Hey Dean!

Kelly Jean — Thu, 05 Jun 2008 01:13:29 GMT

Where've you been?!?!? I hope all is going well.

posted in Spasmodic Dysphonia - 6 replies

so scared of losing my job

DeanSF — Thu, 29 May 2008 18:29:48 GMT

I’m really terrified that I won’t be able to do my job anymore.

Yesterday, two people in a row couldn’t understand a word I said. My manager happened to be sitting across the atrium, and she probably could have heard the first one going on and on, saying “I can’t understand what he said!” over and over.

The next one was an elderly woman, who just pretended she could hear me. She responded to all of my questions by saying “Okay.” This happens to me more and more frequently. I guess that some hard of hearing people are uncomfortable admitting that they can’t hear you. I can’t get anywhere with a transaction unless people understand what I say.

Nearby staff members were observing this but not reacting in any perceivable way. I wonder what they think at times like this, when I, as a supervisor, cannot handle a transaction because the patron doesn’t understand a word I say.

I am so scared of losing my job. I don’t have any resources to help me find another job. My workplace policy is that you have to be able to do the main functions of your job. They are required, of course, to provide accommodations, but only if I can perform the regular functions of my job. The accommodations must somehow help me to do that, and I cannot think of any accommodations that will help people to hear and understand me better. I already have my amplifier, which my job wouldn’t pay for, and which isn’t helping much at this point.

posted in Spasmodic Dysphonia - 18 replies

so angry and alone

DeanSF — Sun, 25 May 2008 03:47:37 GMT

I recently met an online, long-distance friend for the first time. She told me, "I think you make too much of your voice disorder. I could hear you just fine."

Yes, but if she followed me around from day to day, from situation to situation, she would know that sometimes no sound comes out at all. She would know that I cannot start a conversation with a stranger or make small talk with a store clerk. She thinks my difficulty with meeting new people is because I'm "shy". Gack. I'm about as shy as Auntie Mame was sober.

People in California think I'm rude and unsocialable because I can't make small talk. I am alone because I can't talk in the usual places people go to meet new people. I have no support group because I don't have a car, and even if I could make it to the support group, would anybody there be able to relate to a 46 year old single, working-poor gay man? The members are all older, married women. Most of them are retired. They have husbands or children who give them support. Many came from the corporate world and have money. At the very least they have people in their lives they can relate to.

I have no one I can talk to about SD. That's why I started this tribe, but I can't even get people to join or participate.

posted in Spasmodic Dysphonia - 9 replies

affects of voice disorder on social life

DeanSF — Sun, 27 Apr 2008 03:09:11 GMT

SD has had a HUGE negative impact on my social life. My social life is essentially online. This has been unsatisfactory to me, and I am TRYING to create an "in person" social life.

I find it extremely difficult to make new friends now in my mid-forties. A large part of that has to do with having SD and how that has affected me, particularly after my life partner left me. There were other changes going on at the same time, and I lost practically everything: my future career, my family, and most of my friends.

It is hard to start from scratch at 46, especially as I am different in more ways than one.

I wonder what your experiences have been?

posted in Spasmodic Dysphonia - 2 replies