Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 i dont have experience with lbd and social security but i was awarded soc sec at 28 due to a newly named bladder disease in 1988. so i can pass on some advice........ first and foremost, soc security always always turns down no matter what for at least 2 times. my ex brother in law, worked for a head injury rehab hospital where most people were vegetables, and even they werre turned down at least 2 times, so dont let that discourage you. i ended out getting an atty but paid for them to do nothing, i did it all myself. so i dont feel like you need an atty, no sense throwing away 1/3 of your initial payment. the first 6 months you are outof work, you are on your onw, you will not get reimbursed for that, but anytime beyond that you should get a check retroactive for that . 3rd, fill out completely every line of the form, my rule was a detailed explanation for each line if possible, after all nothing was a simple yes or no answer ad i figured more info was better. 4th. keep copies of everything of you send, even if you had one from last time, becuase you may need it again, and in the order it was sent in as well. i had a file folder for every mail out i sent in . 5th,getting copies of medical records help but do not pay for it, on the last lines of the soc sec appllication you sign a release of medical in fo to be released and forwarded to them, soc sec does pay the doctors office for copying of records and they will do that regardless of waht you send in. this way they are sure tey get complete records not ones that just support the disability. 6th, dont give up, soc sec logic is if they drag it out long enough, if one can go back to work they will, or people get so frustrated that they just give up, perserverance wins out, be prepared to send in lots of info on lbd. assume that your caseworker knows nothing about lbd, and send in documentation to support your claims for disaility. i was very fortuante that i had a caseworker that loved to learn and read everything i sent in and requested more about my bladder disease. 7th good luck and if i can help in anyway, please feel free to write persoally at LadySmilingAtU@... or thru group, sharon m a smile a day keeps the meanies away!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 donna p and others, i forgot cancer is one of the few diagnosis that give you immediate social security benefits, i am sorry aboutyour niece donna, may knowing that you and your family have a beauitiful 20 year old guardian angel protecting you, make you smile as you remember her. sharon m a smile a day keeps the meanies away!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Ed, Can't speak from the LBD standpoint but, from what I understand, you are usually turned down the first time. My niece died from liver cancer at 20. She got it first try when she applied. Others I have heard of had to appeal. If I were you, I would apply. If turned down, I would keep fighting to get it. Your MD should be able to help. Donna P. > Does anyone have any experience with getting Social Security > Disability for their LO with LBD? My Rose is only 55 and her > symptoms are mild but she can't do RN work anymore. Can we expect a > prblem with SSA? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hello Ed, I don't know exactly how much help I can be, but this is what happened with me and I will try to give you a few suggestions. I was not just having some problems with the paperwrk and due to what seemed to be disorganization of my mind and inability to concentre. There were other problems with the brain itself, but I believe it was my physical disabilities that got me my SSD. I did get it the first time I applied. I could not apply until I had been out of work for 6 mos. I never recieved any type of pay for that with exception of food stamps. My situation and that of Rose were alot different as my motor skills had been so affted and I did not quit work, well actually I still haven't come to think about it. I was just never able to go again as I had become so ill. During those six months I went down hill and rather quickly. I made sure all my Dr.s were aware of the situation and that I was applying. I had been put through some Pscho/social exams along with other tests. All of these to show my disabilities. There was thorough documentation of everything. Now the SSD board said they were noty receiving this documentation and yet my Dr.s said they sent it. Quite a runaround. So SSD picked a Dr. and sent me to her for approval. Goodness I didn't know I was so bad off as she was finding all sorts of what she thought to be neat neurological positives on her test she asked for permission to bring some students in to observe so they would know what it was should they ever see it again. It was funny as I felt she thought she had hit a diamond mine or something. Usually unless there is obvious and gross disability noted you will always have to go back a second time. Since Rose does not seem to have the physical problems that are obviously aware then it will be vwery important that you have accurate diagnostic documentation regarding her mental disability. Just a Dr. saying so will not get it and the disability has to be to the point where she would not be able to hold any job. Be sure ther is lot's of documentation, not only from Dr.s, but from work as well Frequent job changes with similar reasons for quiting or being let go is good. When I started having problems at one place I wentto another as I beleived it to be their problem not mine after all I didn't think they liked me anymore. But when I went to another job and after a few months started having the same complaints about my work I knew then that it was me and something was definitely wrong. Still I pushed it though until physically I broke down as well I wished you and Rose all the luck in the world and lot's of fun and romance for many years to come...Hugs....Patti > Does anyone have any experience with getting Social Security > Disability for their LO with LBD? My Rose is only 55 and her > symptoms are mild but she can't do RN work anymore. Can we expect a > prblem with SSA? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hello Ed, I don't know exactly how much help I can be, but this is what happened with me and I will try to give you a few suggestions. I was not just having some problems with the paperwrk and due to what seemed to be disorganization of my mind and inability to concentre. There were other problems with the brain itself, but I believe it was my physical disabilities that got me my SSD. I did get it the first time I applied. I could not apply until I had been out of work for 6 mos. I never recieved any type of pay for that with exception of food stamps. My situation and that of Rose were alot different as my motor skills had been so affted and I did not quit work, well actually I still haven't come to think about it. I was just never able to go again as I had become so ill. During those six months I went down hill and rather quickly. I made sure all my Dr.s were aware of the situation and that I was applying. I had been put through some Pscho/social exams along with other tests. All of these to show my disabilities. There was thorough documentation of everything. Now the SSD board said they were noty receiving this documentation and yet my Dr.s said they sent it. Quite a runaround. So SSD picked a Dr. and sent me to her for approval. Goodness I didn't know I was so bad off as she was finding all sorts of what she thought to be neat neurological positives on her test she asked for permission to bring some students in to observe so they would know what it was should they ever see it again. It was funny as I felt she thought she had hit a diamond mine or something. Usually unless there is obvious and gross disability noted you will always have to go back a second time. She also told me I was good at masking my symptoms. lol Since Rose does not seem to have the physical problems that are obviously aware then it will be vwery important that you have accurate diagnostic documentation regarding her mental disability. Just a Dr. saying so will not get it and the disability has to be to the point where she would not be able to hold any job. Be sure ther is lot's of documentation, not only from Dr.s, but from work as well Frequent job changes with similar reasons for quiting or being let go is good. When I started having problems at one place I wentto another as I beleived it to be their problem not mine after all I didn't think they liked me anymore. But when I went to another job and after a few months started having the same complaints about my work I knew then that it was me and something was definitely wrong. Still I pushed it though until physically I broke down as well. The more Dr.s you have the more likely you will be to get it. Most people do not get it the first time around so be prepared and just keep reapplying. I wished you and Rose all the luck in the world and lot's of fun and romance for many years to come...Hugs....Patti > Does anyone have any experience with getting Social Security > Disability for their LO with LBD? My Rose is only 55 and her > symptoms are mild but she can't do RN work anymore. Can we expect a > prblem with SSA? Quote Link to comment Share on other sites More sharing options...
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