Most Disability Questions Impossible to Answer!!

Discussion in 'Meniere's Disease "Database"' started by dizzjo, Sep 27, 2006.

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  1. dizzjo

    dizzjo One day at a time & baby steps!

    "Most disability forms ask questions that are virtually impossible to answer when dealing with vestibular problems", said a physician who has a vestibular disorder. This was in response to a survey taken last year (summer) by VEDA who had asked for participation in the spring about cumbersome forms and information needed to help SSA representatives in "decision making positions "

    They encouraged the people at the decision making end of things to get the vestibular-disabled person onto SSA disability and subsequent Medicare very quickly, because the condition can rapidly cause other problems, including hearing loss, confusion, de-conditioning injuries and depression.

    If there is a newsletter that was the most helpful concerning the struggles that people have getting disability with vestibular disorders, the Summer issue of 2005 was the one with the information from the input from others.

    I remember asking for input that I could provide from others on the forum and only got a few responses, but submitted only my own information.

    One patient who had been declared disabled by her physician had an attack in the SSA office and had to be helped and could not walk without assistance of the SSA agen, yet her disability request was turned down and she had to go to court. The judge quickly saw that and in 10 minutes determined that she was disabled. This was after the unnecessary length of time separating the initial application and turn-down till the court appearance which necessitated long and lengthy frustration and delay. the member had to travel 45 minutes away for the hearing and naturally could not drive herself.

    Be sure to include in your claim all the problems that are related to having a vestibular disorder/disease. They have 4 symptoms listed for Meniere's and limit their information based solely on those items and it is up to us to inform SSA that there are other problems that we experience.

    List the cognitive aspects of the disease - the brain fog - whatever name you have given it.

    List the environmental issues - the surrounding area in which you work, (for me it was an office but one filled with noise and visual disturbances) florescent lighting which emits not only flickering light rays but a low level noise that we are unaware of that disturbs the vestibular patient. The humm and drum of office machinery, including computers, printers, copiers, phones, calculators, radios, fax machines, movement of chairs the din of movement and people talking, doors opening and shutting, laughter, and all the irritating noises that just added an increase to the hyperacusis, or recruitment (as was my own case) or the tullio phenomenon which precipitated an attack.

    There are emotional aspects of being HOH (hard of hearing), the visual impact of computers, tiles, blinds and lighting are all part of it. There is a great deal of sensory overload in any and most work situations that can hamper your ability to function. That is all added to the stress of the already malfunctioning ears.

    Make sure you make clear the unpredictable fluctuations of the disease. it is impossible to respond to how much time you maybe could work. i could go to work one day and be fine for 2 hours and then the whole impact on my senses, emotions and cognitive functions were overloaded and I was headed for an attack.

    For those having a difficult time going through the process - those who feel they may be close to a disability situation – write to VEDA - get that summer 2005 publication. The SSA got the information, but they are still not using it the way they should.

    SSA does not appear to recognize that typical interactions in a work environment - small meetings of even 2-3 people, long periods of computer work, reading and any form of travel - are typical factors causing vestibular symptoms.

    One claimant said that her Dr. said that possibly she could work for a few hours on a good day, but could not identify which part of the day would provide the 2 good hours and possibly they would not be consecutive, but sporadic, which means that it may take a person 5 or six hours to find a quality of 2 hours of work.

    Drs. refuse to keep testing and retesting patients over and over for something they already have the answers to - the patient is disabled, has Meniere's Disease or another vestibular problem and no amount of testing by more Drs. is going to change the situation for a patient. SSA should accept the determination of the Dr. treating the patient instead of necessitating more and more testing which proves nothing.

    More often than not, it only compounds the problems for the patient by adding unnecessary stress. No one test should be considered critical for a determination, but some determination boards qill continue to keep asking for these. A patient will test different every time a test is run.

    Don't use hearing as a single factor for a disability. Neither should the disability determination be based solely on attacks, or the tinnitus, or the aural fullness and pressure, or the recruitment or the depression, or the cognitive limitations or any other thing. The whole of the disease is made worse by lengthy paperwork adding undue stress, frustration, loss of work, loss of insurance and loss of self.

    I have subscribed to this newsletter for several years and found it on of the most validating piece of information you can have in your possession.

    5 whole pages of information in this one newsletter entitled Government Agency Asks VEDA for Input on Disability Criteria for Vestibular Disorders.

    VEDA members spoke up and were heard. Now the ball is in the court of those who need this information at SSA.

    When filling out forms - take all the space you need to fully inform SSA what you are trying to live with.

    I really feel bad for those who are having such a difficult time and I wanted to get this information to you. I wish you could read all of it online, but VEDA works with subscription and charitable voluntary contributions from others to keep the side up and running and Newsletters going out and other publications.

    Back issues of publications can be ordered online.

    To order -

    I am a member and don't receive anything but my own membership benefits of getting the Newsletter - I just feel that such valuable information is so good and find it very informative and important - and this kind of information and help is not so forthcoming from very many sources.

    I see so many struggling for SSD benefits that it is frustrating that you aren't getting more help.

    I was one of a few who was able to do this on my own and win after the initial turndown. I did have help from the insurance carrier of my disability insurance at work for which I was on (Long Term Disability). He called one day and asked me some questions and sent me guidelines in wording the disability claim. He also connected me with SSA folks for a frustrating 3 way conversation - it seemed to help prove to them how disabling things were for me even from home.

    Anytime you apply for STD and LTD at work, it is generally a requirement that you also apply for SSD. If you are on LTD at work, try to get in touch with the representative there who knows how to work with SSD - they can be very useful.

    I am sorry this is so long. I just want to try to help those who are disabled and who have been supported by that from their Dr. know that there is help regarding emphasis on your disability status. I hope this helps. The whole process can make the applicant even more confused with tedious questions asked over and over again. They should be told this.

    Hope this is useful information to some of you. VEDA is an informative website and has a good publication in the quarterly newsletters they mail out. They cover all balance disorders and vestibular diseases and disorders.

    Good luck going through the process.

    dizzjo ;)
  2. Motor City Spinner

    Motor City Spinner New Member

    Thank you for the info. I'm new to this I still have a hard time beleiving I have this "Menieres" I keep thinking Ill feel better in the morning. You have just described it exactly, that is, what I have been going through.I thought I was having a mental breakdown, I was always a smart person, learned easily. Now I cant make it through a day witout messing up my words I would love to have a clear mind again. I have Meniere's
    loss of hearing, spinning,foggy mind.It really saddens me.
  3. Linda1002

    Linda1002 New Member

    Hi Motor City Spinner and welcome!

    Keep your chin up. It might get worse before it gets better, but it will get better!
  4. gardenfish

    gardenfish New Member

    Motor City Spinner, sometime you WILL feel better in the morning. Truly.

    Joyce, so good that you saved all this.
  5. sparksmith

    sparksmith New Member

    Hey motor city,
    I identify with what you are saying about being intellectual. I use to consider my self and "oratorical genius” my own words. Now I can’t remember my good friend’s names. It is very frustrating. Even on here some times I use spell check if I type too much to see how bad I did.

    Don't give up! GF is right you will have better days. Maybe not as you were but better than you are at present

    God Bless,
  6. marlyn56

    marlyn56 New Member

  7. debin

    debin New Member

    Marlyn, I know what you are dealing with when it comes to helpful information. My ENT is not very personable at all. I am also on the diuretic and he did not tell me that I needed to drink alot of water to flush my system. Also on the low sodium diet which really stinks because you miss the foods you love. I just bought a book to helpout in the sodium levels. GOOD LUCK TO ALL!
  8. johnny pinwheel

    johnny pinwheel New Member

    thanks that helps me out. i'll check into this. i had my hearing in august, still no decision. it seems like they don't understand these disorders at all. my file was being examined by some med expert, i think its just a way to delay things ,which they are good at. meantime i get sick over the frustration and "chase" after being kicked in the butt by this disease. HOW CAN THEY NOT EXPECT PEOPLE TO BE DEPRESSED. this has been going on for a year and a half. i have a 15 year old daughter that depends on me . for 25 years i paid into this crappy system , for what , to be toyed with at the most vulnerable point in my life? it just doesn't seem right. ???
  9. dizzichck

    dizzichck New Member

    I just read through this thread. I have to say I completely agree - the questions are impossible!

    I worked as a legal secretary for close to 20 years, the last job working with a worker's comp lawyer. When I got the forms from SS I opened the (huge!) envelope, looked at all those forms and broke down. They were, for me at least, overwhelming. And I was used to vast amounts of paperwork and bureaucracy. I called a SS lawyer and let them deal with it. The percent of my first check was well worth the initial filling out and filing of paperwork and the subsequent (almost ALWAYS) denial of benefits that has to be contested. Ironically, my denial of benefits came while I was in a psych hospital for the major depression that reared its ugly head after the meniere's took my jobs away from me -- and that fact actually helped me in getting my benefits. Strange world we live in, huh?

    Once you're in the system, that's not the end of it. At least not for me. I get reviewed about every other year. I see that envelope and start hyperventilating. If I ever lost my SSDI that would be it -- I don't have a husband or family to pick up the financial slack.
  10. johnny pinwheel

    johnny pinwheel New Member

    i got a lawyer right from the start. i kind of saw this coming, when my doctor put me out for 6 months from the get go . but still i waited about 16 months for a hearing , in august, still no decision. it really stinks , thank God for family(my folks) or i would be homeless. if i was 2 years late paying when i was working the irs would have charged me a fortune or thrown me in jail. if you are obviously sick and 2 or 3 doctors say so why the hold up? i'm really aggrevated and it doesn't help my condition at all !
  11. DizzyNBlue

    DizzyNBlue Forever Faithful Dumbass

    I've posted this in 3 other threads but hoping this information will be of some help and thought I'd post here to. So It will be seen by as many as possible since this seems to be "Hot" topic.

    This was the first time in my life I had to ask for help as I to was a single mom.

    This WAS By Far The Hardest thing I had to do was walk into the Human Services Dept and ask for help. You see my x skipped out on alimony and child support and I had no family to fall back on at the time. I worked 2 jobs off and on before getting sick, but upon getting sick I couldn't work period.

    But comes a time when we have to let go of "some" of our pride and ask for it for the sake of our kids and our saneness. It does take a load off when you have them to fall back on. Don't be too proud to ask. It's hard I know b/c I did it.

    This was also at the beginning of my illness a time we lived in public housing for right at a year. I never in a million years could have seen myself in public housing, not that I was too good for it. I worked and had a great job, money in the bank, savings account. But had also used up all resources and could no longer work ...

    We do what we have to "To Survive"

    Some links for assistance ........

    just to list a few of the resources on the page Financial Assistance, Low-income, Evaluations, Assistance Programs, and Funds

    Look at just a few of the medical problems I have listed below from the web page that could "possibly" qualify you for SSI. Then go to this web site there's quite a bit of useful info there... hope this answers some questions for many people. There is info on Disability Claims - Information & Resources and Social Security Disability & SSI Disability Claims In All States, Nationwide Benefit Assistance . Information . Resources

    also Most FAQ

    Here are a few medical disabilities that could possibly qualify for Social Security Disability and (or) SSI *

    Depression or other Mood Disorders, Type 1 Seizure Disorder, copd, Emphysema, Hearing Loss or Poor Hearing, Statutory Blindness, Peripheral Field Problems or Other Vision Loss, Bipolar Disorder or Manic Depression, Panic Disorder, head trauma, memory loss, learning disability, epilepsy,chronic fatigue, , anxiety, inner ear problems, meniere's, vertigo or dizziness,

    *- Social Security Disability benefits may or may not be awarded for disabilities due to the above conditions. This information is provided as general information, not as legal advice. The information is not intended to be unsolicited legal advice.

    Note: if you've been disabled and are not able to work for at least twelve months, then you should apply immediately as the social security disability and (or) SSI Disability claims process takes a long period of time to process.

    Best Wishes and Good Luck ....
    normally there's no fee unless you collect, that's how mine went

    I know in my case I got a lawyer b/c I was told I was too young to be on SSI, until "They" saw my condition at the hearing.

    I hope that this information is of help to someone.
  12. thetazzdevil2001

    thetazzdevil2001 New Member

    wow....... this was all almost overwelming( i cant spell LOL ) anywho i am appealing my case now working on my paperwork now, i cry everytime i talk about it , i am only 27 years old have 2 kids one 5 yrs. (boy) and a little girl who is going to be 7 mo. i got diagnosed almost 9 mo. ago my symptoms have just been getting worse it started with hearing loss and not being able to tell were things were comming from, now i get migrane headaches bad ones at times , dizzy to the point that not only do i look and feel like a bobble head but the world feels like it is spinning around me, nausea to the point of vomiting but i never do, and i dont know if that is bad or good sometime i just wish i would i think i would feel better, oooohh and i have pills i have a whole cabnet full , im one migrane pill #3 and it seems to be giving it a good go at takin the edge off but im still having to take the onset pills at least 3 times a day which is the max so im still stuck with a bad headache at least 2 times a day. but try telling the people at the ss office this , they just dont get it, im loosing my mind here , i can tell to, My poor husband. he's a marine ( thank god for that , or else we would be swimming in medical bills right now ) but i will just go off at any givin time, and i forget things is that normal ????? to forget thing ?? dose that go witht this MD ?? And my words they dont come out right when i talk sometimes they get all jumbled up could that have something to do with it ??? I know i get Depressed any time i think about what im missing out on cause i cant get out of bed or we cant go out with our friends , or whatever the case my be, just normal stuff taking a walk even, i just cry , One day just watchin my husband cleaning and cooking supper cause i had a migrane made me just start bawling not just cry but break down , i lost it , i could not handle the fact that he just worked all day long and here i am camped out on the couch ......he gets frusterated cause liek the docs there is not much they can do. sure there is surgery i heared but man who wants that? they sound a bit scary to me ...... if i may ask how old are some of you on here are any of you close to my age??? most of what i read people are like at least in there 30 or 40 before they get MD is that true?? Well i need to get back to paperwork if anyone can think of more to help me please help im on yahoo messenger at chadwick_ramsey , we are just sinking ferther into debt here and need something to get us out and if i cant go a day without having at least 2 or 3 attacks i have no clue how im supposed to get a job so they say...............thanks for reading have a great day, im going to try...........
  13. lighthouse

    lighthouse New Member

    Hi, You are not alone I have the same thing going on. I just had to quit my job. I could not do a days work without haveing attack. When I tell my friends what going on they look at me like I'm crazy. I minute I 'm doing great then the next I can't even walk. It has gotten this bad in the last 6 months. I can't help wonder if I going to end up in a wheelchair.
  14. darkwingedfae

    darkwingedfae New Member

    I have been battling with SSI and SSD for over two years now and have run into these problems as well. My lawyer said Meniere's is one of the hardest invisible disabilities to for the system, for many reasons you have stated.
  15. johnny pinwheel

    johnny pinwheel New Member

    i am having the same probrlem. and this disease is just getting worse. some guy i know just got his he was drunk and fell down a flight if stairs. we are all sick by no fault of our own and get nothing . what gives ? its not evewn fair. ! :(
  16. im2dizzy

    im2dizzy New Member

    I've paid in to the lousy system for almost 45 years. I never have had a job that I was paid under the table. I have only drawn unemployment for 26 weeks in all those years and that is because I was put out on the street after the plant closed when I was 53 where I had worked 30 years. Missed full retirement with teamsters by 3 years. Got a little small bit of a pension out of them. Then went to work and was working on another pension and was 3 years from having a 10 year pension through the gov. and got this *"#!* disease and took a FMLA and was told when I came back if I still couldn't do my job I would have to resign. Well since it was a very physical job and there was no way that I could do it anymore I had to turn a resignation paper in. I mean how do you lift a 60 pound case of copy paper using a cane? It was hard enough to do it before the beast got me. Now, after paying in to the system all of these years there fighting me from getting one penny. I am close to retirement age too, since I'll be 60 in 2 months. Here's the real kicker. I've had 2 dex perfusions and 5 major eye surgerys in the past 7 months and I worked all that time except for the 3 months FMLA. Don't get me wrong I'm not depressed about it but sometimes it's just doesn't seem fair. What a Country!!
  17. feelbizarre

    feelbizarre New Member

    It isn't fair. But once you get turned down is best to get a lawyer! It's a racket like anything else. I had to go to the hearing stage, waited over three years and was approved by the judge within 10 minutes.
  18. I miss dancing

    I miss dancing New Member

    I have had MD for over 2 years now in both ears. This past Sept I woke to find I had total loss of hearing in my right ear. Boy, if I thought my balance was bad with MD, it was nothing compared to what happend in Sept. I now had to use a walker and sometimes even fell with it. I had all the tests MRI and so on only to be told, "we don't know what happened, but it probably isn't due to MD". Great, just great...what do I do now? The answer: file for disability...yep that was the Drs advice! I was about 1 month before I could sit up in a chair at the computer. I thought, I just look up SSD and file online....and then I saw all those pages to complete, I must have cried for 2 days straight. I had just started a new job in FL and was totaly alone, except that a friend just happened to be visiting when I lost my hearing. Bless his heart, what he went through...feeding me, bathing me, picking me up off the floor and on and on! I was totaly humiliated! Lost my job, no insurance, no savings! It was about a month before my family in Indiana could get funds to fly down, rent a truck, pack my belongings and drive me back to Indiana. (my God, 3 days in a car was prue hell) So, now I'm back and was told by SSA that I did not have enough work credits to recieve SSD, I'm 2 credits short....seems the 3 years I spent not working taking care of my Mother screwed me. I did just recieve my letter for SSI and now I will get a whopping $424 per month. I applied for Medicaid in October but still no reply and I'm out of meds. Of course, the depression seems to make the MD worse and that in turn make me more depressed and no one can understand why I just want to end this! I used to be the caretaker of our family, I raised 3 daughters on my own, cared for my Mother, I was the one that got it done. Now, to be reduced to being cared for. They have their lives, so they have to take turns looking out for me. I have to lie about how many times I fall. It would only worry them to know that it's almost daily. I'm so tired of hearing...."just pull yourself together" only makes me feel worse...I don't know how to anymore! Pull myself together, hell I can't even pull up my pants! I'm having a pitty party here and I promise not to do this again, but I had to get some of this out and I'm sorry.
  19. Butterfly

    Butterfly I will learn to fly agian.

    This is a great thread. Thanks dizzjo. I filed for ssd a few weeks ago. I went to the ss office to file and I was there alomost 2 hours. The lady that I dealt with was actually really nice and told me I had a very strong case. She said it will take 4 to 6 months for me to get a answer. Now the waiting.... Im expecting to get denied it seems like most people get denied.
  20. SMRoz

    SMRoz Coast Guard Dizzy! (Ret)

    Good information

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