Posted by: Moderator-JB ®
01/17/2003, 11:10:02
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Bob,Are you just newly applying for SSD or is the process been in motion for a while? The first interview is easy, just answer their questions as clearly as possible. How long have you had BEB and when did you stop working? Glad to have you in the group. More support is available here than likely anywhere else. We understand. Judy (also on SSD)
blkmn36@earthlink.net
--modified by Moderator-JB at Fri, Jan 17, 2003, 11:10:56
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Posted by: Delaine Inman ®
01/17/2003, 11:12:55
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I got my SSD on paperwork and phone interviews and never had to go in to see a doctor or case worker. Have a BEBRF brochure with you to quote and Focus on the Facts: that as of today there is no cure and you are not expected to get better, Botox and surgery are temporary tools that do not cure or eliminate symptoms and wear off, the symptoms wax and wan from one minute or day, you can no longer perform the functions of your job, when you are at your worst you are functionally blind (have that definition in front of you)and describe what it is like on your worst day and you never know or can control when those days will occur. Say that stress and fatigue makes the symptoms worse but is not the cause of the disorder itself. Know that you do not have to see anyone except an expert in the field of BEB and you will pay the difference in the cost to see one rather than see someone they assign who probably is not an expert. Have a list of everything you have tried that has not worked and what you are doing now that still has not allowed you to perforn the functions of your job. Be assertive not passive or aggressive. If they ask questions that are not applicable to BEB say you can't answer it because it doesn't apply to what is wrong with you....ie....can you bend over and touch your toes? Tell the truth about how hard it is to live day to day and how unpredictable your days can be. Good luck. Think positive.Delaine in TN who applied and got SSD in 60 days when I was told by an expert doctor in BEB that "No one gets SSD for BEB", told by others who had applied that it would take 2 years hoping I would give up and quit, told by others that I would be turned down twice and then I'd have to get an attorney.............ALL OF THEM WERE WRONG! KEEP THE FAITH! DON'T GIVE UP!
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Posted by: ANNA FUZIE ®
01/18/2003, 20:45:58
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Well said, Delaine. You're absolutely right... you must be an advocate for yourself in this case. As an RN, I see so many people on SSD that truly are not as impaired as this disorder can be!
Anna in the California desert... (who, despite being 99% better with very little twitching just in the cheek/jaw area, worries everyday, if this will be the day that she gets up can't drive, work, etc...but grateful and ever the optomist).
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Posted by: Patti Miller ®
01/18/2003, 18:44:22
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Bob, I just filed for SSD Dec. 31. I walked in the SS office with all my paperwork and waited for a number and found out I had to have an appt. That was a bummer. I had a choice to come back or do the telephone interview. I made a telephone interview appt and as I was leaving, the guard was talking to us and I asked him which was better and he whispered to come back in. I changed my interview to come back in person. I was in and out in 20-30 min and she said I could get approved as early as May if all went well (not because I came in). Suggestion: if you don't have all the forms in front of you and filled out, if you're like me you'll fumble for words. The forms can be gotten off the internet at www.ssa.gov. For days before my interview, I went over and over my answers to be sure of what I wanted to say and to be explicit and be sure of what I wanted to convey to the person making decisions on my behalf. When the form wasn't giving me enough room, we drew lines in between lines for a few questions. I'm not sure how the phone interview works, but I felt I wanted to see the social worker in case I had to talk to her again. She said she hadn't seen forms filled out so correctly in a long time and said she was very impressed They still sent me a few forms later to fill out, but now I'm in the waiting process. Phone interviews work too, but the most important part is to be PREPARED ahead of time for all the questions. Good luck and let us know how it turns out. Patti in SC watching our little snow melt
--modified by Patti Miller at Sat, Jan 18, 2003, 18:47:43
Modified by at Sat, Jan 18, 2003, 18:47:43
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Posted by: Kathy Pellette ®
01/18/2003, 20:01:43
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Although I don't have dystonia in my eyes, I do in my neck and have for close to 5 yrs. I first applied for disability in the fall of '99. Mainly, at that time, I was recovering from a broken neck from a car wreck wearing a halo. I had just found out about that same time what this awful disease was that I'd had symptoms of for about 2 yrs. by then. I had just started meds for that.
Anyway, I first called ss office and told them I wanted to apply. They sent me forms. A few wks. later, there was the phone interview, which didn't take long and mostly asked about all my employment history and then what was wrong w/ me now plus all about finances ..any car..and everything you can think of they asked.
Anyway, then more forms which asked all the same things only very detailed.
A mo. went by and at that time, I didn't have a lawyer, and I was turned down..they thought I could still work! ha..
Anyway, of course, I appealed that time, then months later, I went through the whole shebang again and was rejected.
Then I knew of free legal help in a city I used to live at. My lawyer actually was not an official lawyer..she was almost about to take her bar exams! Anyway, I gave her a chance. she had enough experience it seemed to know quite a bit. First I met w/ her and we discussed the whole waterworks all over AGAIN.
Well, all this story DOES have a HAPPY ENDING.. after my one visit w/ her, 2 or more mo. went by and then A Hearing w/ a real judge was set up.
As Far As Time Goes By..at this point all this process had been going on for 2 yrs. Luckily though, my neck healed and halo and neck braces came off. But my dystonia was still very bad in my neck.
I Had a Hearing. He saw my twisted neck and tremors. There was also a vocational rehab person who I was told might want to ask me about what kind of work could I do or did I do etc. He never said a word. The judge asked me quite a few questions, but altogether it all came to an abrupt end. Lawyer girl saw this as a good sign.
About 2 mo. went by, I received word, that I was Finally APProved, not only would I get back-pay for mo. I couldn't work due to dystonia, but also for time lost due to my wreck.
Altogether.. a very long time..2 yrs.
After paper work said I was approved, I then met in person with ss folk, a very nice lady. Mainly, financial info. After that, she gave me an estimate of what my regular payment should be and that I would get my first check that very next mo. after seeing her which I did.
Altogether very very frustrating, stressful, tiring, and depressing process, but some folk have to wait even longer fighting for what they deserve.
So My main message to you Is please don't ..DO NOT GIVE UP HONEY!!
I KNOW YOU WILL BE SUCCESSFUL! My heart goes out to you and all the many others out there who want to know and who need encouragement even moreso than me. Botox works very well for me along w/ meds. but I want to know all about all the forms of it. I want to help and learn myself.
Best wishes.. a friend..
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Posted by: Kelly Saffell ®
01/18/2003, 20:29:56
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I left my job as a CPA in Dec 1999 when I was 30 because of my beb. I had a phone interview first and that was followed up by more paperwork. I was denied on the first go round and filed an appeal. That was denied too. In the mean time, I had been approved by my long term disability insurance carrier and they hired someone to help me with the hearing. Basically, I just showed up, and met with a ssd judge, vocational expert and medical expert. The judge had been previously diagnosed with beb and it turned out he had hemifacial spasm. He had surgery and was cured but he knew all about my condition. I was in there less than 5 minutes and had my approval letter in the mail 3 weeks later. I then had a second phone interview to get information about my kids (almost 5 and 7) because I qualified for benefits for them as well. The total process took 18 months. Don't give up!
Kelly in Dallas
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Posted by: Alan Phair ®
01/19/2003, 07:49:09
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Bob, in my case, I never had to have a phone interview or go into the SS office even though it is about 4 miles away from here. They simply sent me the forms when I called the SS Office, got the necessary Doctors to fill them out (I made sure they were in synch with each other) and waited. I was asked to go for another opinion with an Opthalmologist in town who never heard of Blepharospasm but that was OK as I educated him and he wrote a nice report ). Anyway, I got approved on the first go around after a grad total of about two inutes of conversations with SSI people.Is this a follow up phone call to your application? If so, it is probably going to center around what your doctors and yourself wrote as far as you capabilities to work in your current or any job in the future. In my case, I can no longer drive or read and have trouble obviously keeping my eyes open at times. All of these limit my capacity to do most jobs and present liabilities to employers that they do not want to take on. I am sure that everything will go well. Good luck and keep us posted....Alan P.S. I don't think you mentioned whether you are on disability from your current job or not? While this supposedly does not come into play, I suspect that it does...
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Posted by: irene sieger ®
01/21/2003, 19:03:26
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Alan:
what is the email address to get address of other doctors in my area who are neurologist . From the research foundation.Please let me know
Thank you
Irene
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