As of this coming Friday (10/28) I am three years out from my accident. My TBI includes damage in several areas of the brain, but what I struggle most with is executive functions. While I was a very successful corporate professional, and LOVED working, now I can't even focus/concentrate/use my memory well enough to play a Bingo card. I've been tied up in the SSD application/appeal process for two years now, and hopefully have another hearing coming up. According to my attorney, the problem appears to be that they think I am faking. Today I spoke with my therapist about all this. He said that if he did not know me, and was reviewing the situation objectively, he would see a normal-looking person who is eloquent, and that for him that would translate into an employable situation.
How in the world do I get around this? Anybody have thoughts? I was thinking that if I could come up with research documentation showing that LOADS of TBI patients appear and speak normally, this might help. Where could I get this? What else? I'm so frustrated - our financial difficulties are so dire, we are looking at filing bankruptcy. One last important note - if after I get the therapy I still need it turns out that I can work, NOBODY will be happier than myself.
Exactly my story. We need to do more in this area, sharing more of our details, but also documenting key areas.
mary lutz said:
I can relate to what you are saying Cheryl. The emergency room sends you home and tells you to come back if you get worse?? worse in what way?? They tell you to expect a headache for a few days, etc. I was all banged up so a couple of days later in a lot of pain all over. After a week, I could not breathe and went to my family doctor. They did a chest xray and blood test that would indicate a blood clot. They ordered a lung scan for the next day. The next day my doctor called me and said I had a broken rib, partially collapsed lung, and the lung scan showed a blood clot in my lung. Then they ordered a ct of lung, and I did not have a blood clot.
It made me question what else the hospital missed the first time. Later I discovered that damage can be going on weeks later. They did not tell me not to do anything. I kept going to work. Before I knew my rib was broke, my daughter graduated high school and I carried 20 cases of pop and did a bunch of work-all the while thinking I was a weakling sissy while my body was screaming to stop. I felt really let down by the health profession.
After 3 years I settled with the store that caused the accident. Thank goodness it was all on a video. However, they intimidate and starve you out until you settle. I thought that if there was some financial relief of that stress, I would be able to heal better. I am sorry to say that it has only made it more clear to me that the issues I have are not stress. I ended up with 4 yrs salary in a settlement because the injuries are so difficult to prove and I had fibromyalgia and herniated discs prior (already damaged). Even though I got my masters pre tbi with a 3.8 gpa. I did not know it-but I discovered my attorney also did not like to go to trial and preferred to settle.
Now I am discovering that tbi can lead to other things such as altzheimer, parkinson, I forget what else. I guess I am still a little angry about the lack of support from all sources for mild tbi. I have since been told that if there is swelling weeks following injury, testosterine can prevent further damage. Since mild tbi patients rarely get further testing, the opportunity is lost.
Sorry for rambling on,
Mary and Cheryl, thanks for the great points and more food for thought. Seems like there are some patterns here. FYI, I was in the hospital more than four weeks and they missed a pretty significant problem with my cervical spinal chord. My TBI isn't mild, and I was in a coma for four days. I even have a big dent on my forehead. Still, they think I'm faking. For each hearing, I've told myself to make a list of issues and take it with me, but of course it doesn't get done. I'm hanging a lot of hope on my next (final, probably) hearing. ANY tips those of you who got your SSD approved would be appreciated. I suspect in my case it boils down to who I got for a judge, so I may have to go out on a limb to get this thing approved.
ok, here is another point. in court i found out that the insurance company's attorney can lie about us to see if we are faking it. Really, that is torture, and reason for breakdown and most mis-understood by non brain injured people, as we are crazy first, and injured second or not at all. i think if we could actually make a difference would be to help pass legislation that certain tactics toward injured brain patients can be a violation of the ADA - American Disabilites Act.
Ok, so the fact that yours was NOT mild, Lisa, only further proves the point that discrimination is going on. Arg. I have heard about this before, someone with a significant bleed showing up on CT right after the injury, and then a year later when the bleed is gone, everyone figures the damage is gone and the person is fine. I've also heard about people with neck and spinal cord damage that they find on scans and evaluation, and they don't do anything about it.
You would think that your inability to make your own list of symptoms would help you prove your darn point, but nope.
It IS about the judge, and it is also about the lawyer and the expert witness assigned to your case. My mother is an expert witness in SSD cases, and I have even consulted for her on a TBI case. I hate to say it, but I am the one who helped qualify a man with mild TBI who my mother was not going to vote in favor of. His medical records supported his need for benefits, but the MD testifying against him was a bully. I gave my mom the technical knowledge she was lacking (I'm trained as a speech-language pathologist, which is why I have that knowledge), and she qualified him in a heartbeat. But without talking to me, she would have likely denied him just like the people who are denying you.
Do you have a recent Neuropsychological evaluation? They can document things like how you can't write lists about your own symptoms and all your other executive function impairments AND your other injuries. I also can't write down my symptoms in one sitting and have to email my doctors constantly adding symptoms that I forgot I had. My SSD applications are probably literally unbelievable because the symptom list is different every time.
What state are you in? I will look up some resources for you to get someone who has heard of brain injuries to get on your side and fight with you, not against you.
I agree with Debbie. Technically, we are part of a "vulnerable" population, and there are protections in law enforcement and legal actions that should protect us. We need someone to include us in the definition of "vulnerable" and train lawyers and judges that their sneaky tactics are harmful to us. Good call, Debbie.
DO YOU HAVE A LAWYER ? SS PAYS HIM , YOU DONT , NOTHING WENT GOOD FOR ME TILL I GOT A LAWYER , GOD BLESS KEEP GOING
This post from the CDC mentions that 43% of people are disabled after severe TBI. That's a large percentage.
From Brain Injury Association of America. If you click on the link for TBIMS Research Return to Work after Brain Injury there is some info on studies about return to work.
3. My favorite is: http://www.biausa.org/biaa-position-papers.htm
Click on Conceptualizing Brain Injury As A Chronic Disease . This paper is a goldmine of information on chronic and persistent difficulties in the brain and other body systems after TBI.
Thanks again all. Cheryl, those are some wonderful (though unfortunate) stats and I will use them.