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Posted by: Incognito ® 04/27/2009, 04:09:54 |
My life has slowly deteriorated from this condition. I've lost so much. Including jobs, relationships... I mean, what the hell else is there to live for if you can't pay your bills, you can't make new friends and everywhere you go that you have to speak and people look at you crazy you have to make up some quick explanation so you don't have to explain what "spasmodic dysphonia" is in laymens. I'm so angry right now and there's nothing I can do about it but cry. I don't have money to get treatment and have no idea how to get insurance to cover it. I search high and low but only grow more aggravated when I run into a dead end and to make it worse its not like I can even voice this to anyone because I can't talk!!! Yea, so if this depressed anyone even more than they already are, sorry but my life is crap because of this condition and I don't know what to do anymore. *smh* Suffer silently I'm young, I'm very attractive (so I think), and I used to have tons of personality. Now I don't want to take care of myself and I realize everyone around me thinks I am some recluse, anti-social loser because I can't participate in normal convos and I get extremely insecure in any type of convo and it READS like I am some shy, scared person. Frustrating?? Beyond. Its painful emotionally and that's worse than physical if you ask me! I can't explain it to strangers because they don't understand. They judge and think you are someone with psychological problems, which, hell... I'm sure I have some now. Lol! Support would be nice, but I don't seem to have any family or friends that understand the weight it carries and so no one seems to offer help to a solution. Maybe I play it off very well. Who knows... Thanks for those who read this rant all the way through... -Incognito Modified by Moderator-LC at Mon, Apr 27, 2009, 17:52:38 |
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Posted by: infenity23 ® 04/27/2009, 19:26:32 |
I completely understand/sympathize....if that's any consolation. I'm also young and attractive (IMO), and this condition has seriously hindered my enjoyment of life. I wouldn't go as far as to say it's RUINED my life, as I still find a lot of joy in certain people, places, and things. But yah, it's greatly diminished my ability to enjoy MYSELF, and for that I think I'll always hold a bit of resentment to...what, fate? The Universe? Who knows. Dunno if you realize this, but alcohol greatly helps our condition for a little while. Not that I'm encouraging becoming an alcoholic, but maybe drink in moderation if you wanna be social in particular scenes? And walk or have a designated driver if you take this advice, as I don't wanna be responsible for advocating irresponsible behaviour. |
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Posted by: Irish ® 04/27/2009, 20:27:39 |
Hi Incognito,
I feel your pain as I have had ADSD for 39 years. Perhaps you might like some pearls of wisdom from an old lady. Your voice is not what defines you. If you find rejection from others, then they are not the right people for you. Look at your voice as a way to help you sort out people for their qualities. You are an individual with many attributes and those are the ones that you should concentrate on now. Play to your strengths, not your weaknesses. Within the SD community, for instance, you will find many wonderful people who are very successful in their jobs and in their relationships. Reach out to them. There are many ways to express yourself other than through your voice.....gestures, writing,art, music, and giving. Find those that are special to you. Also, you may or may not know, there are methods of treatment for SD.....botox, voice therapy, and surgery. I recently had SLAD-R surgery with Dr. Berke at UCLA. He severs the nerves in the vocal cords and transplants nerves to that area. This surgery is only effective with ADductor SD. You have been given a gift in a strange wrapping to be sure, but you will find that your life will unfold in some unusual ways because of it. I can personally say that I have suffered and it has made me a stronger person who is willing to fight for my rights. It has also given me some wonderful and caring friends and it has also educated me in ways I would never have imagined. Irish
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Posted by: incognito ® 04/27/2009, 23:47:16 |
I suppose thats one way to look at it... sorry, Im being very pessimistic at this time in my life. I guess there is really no choice but to except it. |
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Posted by: msdontje ® 04/29/2009, 18:30:41 |
I totally understand your feelings as SD cost me my 30 year career and pushed me to the limits. Be thankful you are young as you can still make adjustments in your life and find a career that SD will not hold you back in. My SD finally took much more and at 62 years of age I can't easily start over. I now try to focus on what I can do...... use my hands..... my mind...... YOU WILL MAKE IT........... turn anger and frustration into something positive........ one thing I do is try to participate in every NIH study I can...... maybe one day they will stop this train..... Hang in there.......... and don't stop talking to others.... Mike |
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Posted by: king ® 05/03/2009, 12:09:12 |
I know how you feel. I get upset when I have to communicate
with my family and they don't understand me. Then I have to repeat myself or I let husband steve talk. I use to be a big talker and then when I got sd it gets me upset. Sd is a movement disorder because the basal ganlia in the brain doesn't work properly it can be caused by injury to the vocal cords, or brain damage. Good luck. |
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Posted by: incognito ® 04/27/2009, 23:45:57 |
I noticed that alcohol helped also. I can talk great when Im drunk. But yea... thats not really good. Im just not feeling good about it right now |
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Posted by: mariaa ® 04/28/2009, 07:00:16 |
WOw, your post really brought up alot of old feelings that I still sometimes have.
Sd does suck I got this when I was in my senior year of high school. I had no idea what it was for years......... Finally I saw a ad in a pennysaver and it said do you have these symptoms, you might have spasmodic dysphonia. THan I found the NSDA and a doctor experienced in diagnosing. Anyway I am now 45. I think my SD is moderate. I have tried speech therapy and botox....nothing is perfect with either therapy. Anyway, yes the wine helps .....but you have to be careful. LIke a glass or two to make several phone calls. Believe it or not I became a teacher with this SD. ITs pretty tough. I am pretty. Its kind of shocking that I look good and sound so bad lol. gosh. but, to this day I cant believe it. I will never really accept it. ANd i say why me?? I dont feel it has been a real gift. IT has made me more understanding of people with disabilities and made me a better listener . I was married have two kids and Im divorced now my choice and dating without a problem. I guess if your pretty that overides the voice lol I dont know. Thanks for venting it helps me to know Im not alone. |
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Posted by: wolfe ® 04/28/2009, 11:43:30 |
Yeah, it does suck. Big time. I've had ADSD for five years now. Days go by when I almost forget I have it, and then the moon changes and I am reminded daily for months that I have it.
On page three of this bulletin board, clear down at the bottom is the link to the essay that won the Share Your Story competition. It reflects what most of us feel on this board. SD sucks, but over the long haul it is possible to cope and even progress. Best of luck to you. |
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Posted by: mt.harrington ® 05/02/2009, 09:43:25 |
Dear Incognito,
Boy do I know how you feel! Been there for YEARS! I've been cursed now for over 32 years. I'm 45. Just recently did I go for the diagnosis with an ENT. (years ago I went and was told to see a shrink!) Now I am receiving speech therapy. The medical community is finally taking me seriously!! GO and GET HELP! Even though there's no cure, helping yourself is loving yourself and we all need that. (for so many years I hated myself for not talking "right") Because you are unemployed, I say, get a job with benefits as fast as you can. Believe it or not, they are out there, even for us! Dog walking? Sanitation dept? Janitor? Bagger at the supermarket? It's not forever, it's to get health insurance that will help you! Or what about state health insurance (like MASS Health? etc.) What's helped me a lot is accepting that my speech problem is NOT my fault. It's a neurological problem. You wouldn't make fun of me, would you? So, give yourself the same courtesy. My speech therapy will not stop the SD, but it is helping me with the compensatory actions my body takes when the SD kicks in (like using muscles in my throat that don't normally help during speech). I have felt so full of hope since getting help. I can't change the SD, but I have been changing my attitude towards it. Be your own best friend! Good luck! |
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Posted by: king ® 05/02/2009, 17:07:41 |
It is movement disorder the basal ganglia in the brain does'nt
function properly. Injury to the vocal cords, and brain damage that controls movement. Your family should understand and be supportive. This condition can happen to anyone. Best of luck |
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Posted by: cdf1007 ® 05/02/2009, 19:18:46 |
Hello I feel your pain, I really do. I suffer from the SD as well and it has been very difficult for me as well to keep doing my job. I work with the public so I try so hard every day not to sound like a freak when I speak, and it is so draining mentally. My first botox shot worked but I sounded whispery and then like minnie mouse for about 2 weeks. After that, I pretty much had my voice back for about 3.5 months. The next 3 were not as successful. I don't know if the dr missed "the Spot" or what. This last one I had a spasm during the injection and my voice has been gravelly sounding some days and skips a lot now. It seems to sound different every day, definately not normal. So, I struggle just like you, it does suck! I am going back on the 7th to try it again, I have to do something, I can't live like this. I am an attractive, ususally very outgoing person as well and this has impacted my life more than I ever would have imagined. You need to try to find the will and strength to get through every day, that's what I try to do. I can't give up and neither can you. Good luck... |
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Posted by: Marilyn ® 07/23/2009, 05:04:51 |
I dont know if you still read this thing, but I completely know how you feel. I am 23, attractive, vivacious, love to be part of everything thats going on, and mostly I love making people laugh and putting smiles on their faces. I was diagnosed about a week ago after(luckily) only 3 weeks of being cooped up inside with my new voice not wanting to go out, talk on the phone, or hang out with friends. I thought when I would finally get diagnosed I would get better and I will just put my social life on hold until then. The shock that I felt when the doctor said my voice wont get better was horrible! (as I'm sure you know) The worst was watching other people talk with SD and I couldnt believe I sound so unattractive like that! I pretty much hated the world and was so scared of the change I would have to make in my personality...I felt like I could not longer be funny, lively, or that likeable. I just cant accept that though! I know its only been a week, but so far I decided to not let this get in the way of me being social (obviously it HAS to a little bit) but if I just pretend like its not a big deal and smile and show my good qualities as much as I possibly can then people generally just get over it pretty quickly... and if they don't then I wasn't never really interested in such a close-minded person anyways. I think the most important thing I have realized so far is that nobody really cares... its a voice problem... its not life-threatening and people will never understand how hard this damn thing is unless they have it. I think you just need a good support system(which you obviously have here) my family has been so good at just letting me bitch and bitch about it and they really convince me that they understand. Knowing that I have that has made it easier to accept it with the people that just wont get it. It would be nice to talk to other people with SD though. I've noticed the days I let it bother me less, the less it bothers other people. I work as a waitress right now and my boss is treating me bad every second he can because he knows he cant fire me over it, but he can make it so i wont make anything more than minimum wage while I'm there which has sucked. Anyways, I've noticed it makes me feel better when I read how other people deal with it so I guess I thought I'd write a novel lol =) If you want to email me its mareich86@yahoo.com. I am trying to connect with other people with SD which has been successful, but I am trying to find people with similar interests as me too(preferably around my age) Marilyn Modified by Moderator-WB at Fri, Jul 24, 2009, 13:21:43 |
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