This paperwork/red-tape is cumbersome and I've been told for years that I was not eligible for Social Security Disability because "you can still work." Yeh, right...after almost 30 years in software development in San Francisco, I could work in retail because my voice sounded good in the evening, until recently. Obviously, nobody in the SS Administration understands Spasmodic Dysphonia.

I can't work anymore (or talk in the evening either)...thus moving through the government process.

My Labor Day gift to SD'ers (including myself) was to complete all the detailed government paperwork. That SSD paperwork is massive RED-TAPE. The heading on the Internet forms say, "Disability Alleged." Why don't the forms say "Application for Disability?" "Alleged" sounds like a crime was committed.

If other SD'ers who have been through this laborious application process or are planning to do so soon would share their experiences on this thread, we might be able to shed some light as a group and it may be easier on all of us.

Happy Labor Day. SD workers unite! LOL. ;-)

Anyway, don't think I'm quite ready to file for disability. I may try doing some medical transcription. I wonder if you have to be bedfast to get disability! But then, working in a doctors' office, I've seen many patients who don't appear to be disabled that are living on social security and public aid. Some are receiving disability because they are morbidly obese and can't get out of the house to go to a job. Seems like our voice disability should be at least as valid.

Good luck, Lynne! Let us know how it goes for you!

Vici AB

Good for you for *outing* yourself (your real name on the BB). Nice compliment to this community. Obviously, we can't dump gory details of our cases onto the Bulletin Board but it's comforting to know it's OK to use your real name. Difficult in the beginning.

To answer your question, my personal SD case was unique (they all are) because I got a corporate retirement ("early-out-offering") in 1991, not based on my voice but based on the decades I worked for a very large corporation. I lucked out, basically. My voice had gone bad so I figured it was *stress* and qualified for a basic company *downsizing* offering, so I took it. I had SD for over a year prior to retirement but then spent years after that trying to get a diagnosis and hoping my voice would return.

Years later, I had vocal surgery and returned to work in big-business immediately. Same career. Three years later, I had to quit another corporate job because my breathing was so bad that I couldn't walk 5 blocks up a San Francisco hill to my office and sustain the 4-hour commute every day. I've not been able to find career-work since.

I've never been fired or demoted; but, in the 12 years since I developed SD and since retiring from a long career, I've had 12 different employers. In the 21 years prior to that, I had one job/employer. Obviously, SD took its toll, if you look at those numbers. Haven't been able to keep a job. My career is Information Technology (traditionally a young person's career and one which moves people around alot), thus I am always the first person laid off OR not hired or I'm the one who doesn't get an accommodation due to age or voice. It's clear discrimination but cannot be proven.

Over 30 years of work history, I could still talk and breathe ("and work," per the government) up until recently. It's been a 12-year journey (up-and-downhill, re being able to talk/breathe/work with severe SD). Can't do it anymore, with recent developments.

A "sub-support-group," for SD'ers looking into disability, is important. The governmental application process is rigorous and restrictive. You really have to *not* be able to work at all. All of our cases are quite unique and important decisions are to be made so it's difficult to compare but nice to know others who are going through the same process.

Are you sure you want to give notice? I hope this works for you and that you find something else which works. It's so difficult to find a new job, with SD. I was interested in Med Transcription also but decided, with osteo-arthritis in both hands, that it probably wouldn't work due to the keying demands. Best wishes.

From what I can tell, most BB followers have had professional careers impacted by this horrible condition. Filing for disability is not something that any of us would choose to do. Rather it is something that the system may force us to do when we can no longer work.

Your efforts will hopefully help to lead the way for the many ignorant government and insurance companies that do not understand this condition. Your pain will hopefully be our gain as we all painfully learn the do's and don'ts for filing claims.

My personal situation appears to be mirroring yours. I am about 20 years into a professional career that may end next month due to layoffs. If layed off, I don't see a chance of getting back in because of my SD. I feel like I am on "death row" this month as I wait for verdict.

My prayers and thoughts are with you. I wish that I could offer you some first hand knowledge of a SS disability claim, but I can not.

John

AD/SD Massachusetts

Glad to hear from you. Not sure I'm really *spearheading* this as several of us have written about Social Security Disability in the past but, at this time in my life and in my case, I am convinced that I am too disabled to work (or be re-trained); thus, I have no other choice but to file. I expect to get turned down at least once (almost everyone does) but since my Annual Social Security Statement (the read-out that comes to everyone working under Social Security since 1999 three months prior to our birthday) documents 31 years of contributing to the SS System, I have to try.

As is the case with many of us, I've been "disabled -WITH- SD" for many years (over 12, to be exact) but, according to the SS Administration, I had not been "disabled -BY- SD." Because I struggled to work over the years, even though it has been extremely difficult to get or hold a job, I evidently (terminology-wise) was not disabled -BY- SD because I still managed to work.

The end of March this year, something very different started happening to my voice (the respiratory involvement and air-way contriction which makes it impossible to talk or breathe at times and gives me horrible headaches and gagging/choking fits); thus, for purposes of filing, I stated that my disability began on March 29, 2002. Such things as "the date you became disabled" are very important when going through the process. Things truly changed (or I noticed something quite different) on that date. If I'd said my disability started in 1990, when SD began to develop, I'd be up a creek.

In the past - including the four years I've posted actively on this Bulletin Board - I never got the impression the subject was taboo (especially considering that the NSDA, which pays for this BB has links to SS Disability information on their website) but it definitely is one of the most complicated and frustrating subjects we discuss on this BB. Considering a huge percentage of people who post to this Board are not subject to SS Admin Guidelines (including those outside the USA and those who do not have enough quarters/credits), I can see where it wouldn't be a universally-embraced topic. However, I recently met 4 people whose SS cases were approved so I'm motivated to try. And, believe me...I'll keep anyone who is interested posted.

Sorry to hear your story. Yes, we have much in common. I truly was lucky to have gotten that corporate retirement when I did because I would have been laid off also, I'm sure. People were starting to comment on how bad and "angry" I sounded at work, but I wasn't angry at all. But, I've been laid off plenty of times since my SD surgery and looking for a job (let alone holding onto one) has gotten more untenable every year. Now, with absolutely no predictability or pattern to my voice/breathing in the past 5 months, even my friends don't want to listen to my voice so job-searching among strangers is impossible.

Good luck on your personal situation. Please write me off the BB if you want; and, also, thanks for your recent post on Dr. Zeitels' vocal restoration work in Massachusetts. I've been all over the website you gave us. When things are going downhill so quickly, it gets scary. My new pulmonary specialist is putting me through all kinds of tests and then I have to go to a new neurologist and just the idea of being in numerous doctor's offices for months makes me tired. It's like starting from scratch.

I'll be glad to share what I learn. As for now, I've just done a ton of research and yesterday filled out all the Internet forms. I turn in the signed hardcopies to the local office tomorrow and that's when I get the official application form. I'll be buried in paperwork for months, I'm sure. Unfortunately, I hold NO copies of my own medical records so this will be very interesting trying to extricate information from so many sources, including people who don't understand the connection between SD and breathing and all the other things I have. My first suggestion to anyone (who thinks they might have to go through this sometime) is to retain official copies of your own medical records.

I admire your courage to fight through the jungle of disability application paperwork. Please keep me informed of your progress. I do community relations work for a large alcohol & treatment company. There are so many days that the S.D. causes great stress to me in trying to talk at luncheon meetings, make presentations, give tours, etc. Often, I think there has to be a happier and easier way to live with S.D....but one has to figure out how to pay the mortgage. Is it true that you have to be unemployed for six months before you can even apply for disablity?

I was so impressed with your posted questions today (re SD as degenerative) that I went back through some of your previous posts, so I could be prepared to write you on private e-mail. Just found this one, responding to my SSD paperwork thread.

To answer your question, so far I see nothing in my SSD paperwork which says you have to be unemployed for 6 months before filing. The advice in the paperwork is "File as soon as you are disabled." Isn't that fun to determine, when you have SD?? What they mean is...file as soon as you are so disabled that you can't work. I was disabled with SD 12 years ago but *somehow* I could still work off-and-on. Now I can't. It's not like Spasmodic Dysphonia is THERE one day (and clearly diagnosable and you can't work all of a sudden) where it wasn't the day before.

Regarding your case, if you are currently employed (which I am not), you may be dealing with your company's policies and procedures on Short Term and Long Term Disability, in addition to working through the US government process to obtain Social Security Disability. I can't speak with any knowledge on a companiy's policies but it is possible the six month timeframe (or another timeframe) might come in at that point.

If all of this was not so personally painful (in my own inability to talk and survive and pay the bills), it would be a CLASSIC case study in my graduate classes, regarding what we deal with in trying to stay viably employed in our powerful careers. After 7 years of grad study, I earned a Master's Degree in Human Resources Management (Organizational Behavior/Personnel Management) in June, 1991. My SD had started about 6 months earlier (slowly and progressively) and I haven't been able to talk (in order to fully work in my former professional technical career) or use my grad degree since.

With the question you brought up and the ones that many of us are bringing up on this BB, there are excellent case studies right here and we can learn so much from each other.



Thanks Sherry...writing you on your private e-mail.

At the same time, I am struggling daily to hold on to my career in education with the turmoil of SD and affects of botox/etc.....and often wonder where this all is leading. Right now I'm hanging by a thread....but that's not my choice.

A most difficult question is.......how many other jobs are there for people who can't communicate?

So, when the disability folks begin to play semantics with BY and WITH, it's time they receive a real education. Easy for them to talk :)