I am advocating for a young man who was in a car accident 1 year ago on 1/28/13. He is currently at the Shepherd Center in Atlanta, Ga with a diagnosis of TBI and DAI mild/moderate.

He is in out patient with release date early in March. I will try to summarize what I know about his condition:
1. He is unable to walk. He exercises for an hour or two on a quadriciser, has been doing some walking in therapy, is awaiting surgery to release Achilles' tendons in his feet to help with learning to walk again. What have other done to promote walking?
2. His talking is slow and vocals are not loud. What therapies have been successful for you?
3. His head is tilted and I know there is some muscle stiffness.
4. He has a lot of pain, but I don't know specifically where the pain is.
5. I don't know if he has had any psych tests and what his measurements were.
6. He has vision problems which I believe he is receiving therapy for.
7. This family is desperate for help in advocacy for treatment with insurance company. Does anyone have experience here.
8. How do you keep up with latest technology and therapies for these patients.
HELP!!! Once I get more specific info I will post it but any info now would be so appreciated! Thank you. Beth

Welcome to NeuroTalk. Sorry to hear about your friend.

Georgia has a Traumatic Brain Injury Trust Fund and Agency. You should direct his parents to seek any assistance available there. His condition is more severe that is common here. Reassure his parents that improvements from such a severe injury can continue for years. A friend of mine took 2 years to regain his speech and ability to walk. He lives independently now.

Hi Beth,

I'm not sure what the protocol is in GA, but in CA, when my family thought I needed extra help - we learned from the nurse at my Primary Care Dr.'s Office that all we had to do was ask for it. She called my insurance company and a social worker was assigned my case and followed up consistently.

Unfortunately, the care and treatment I received from them was inadequate - but maybe your friend's insurance company will be better.

Annually, I am called by my insurance company about my asthma and I always complain to them that they don't offer more help for tbi survivors. I am offended because I have lived very well with asthma my entire life and after I sustained an mTBI, they basically did nothing for me in terms of education and follow up (other than the social worker who came to my house once a month for about 4 months - but his insurance may have a better plan).

Anyway, the last time I received my annual call and I complained, my insurance company rep told me that they are working on having a much bette plan for tbi survivors and that they know they lack in that area and that the plan will be in operation very soon.

Anyway, I walked with a walker for several weeks. Walkers are actually light weight. My insurance company provided it for free. His insurance company is probably planning on giving him the PT he needs to learn how to walk again and will give him either a free walker or a discounted one when he needs it.

Your friend is young - try to make the walker "look cool" if you can. Throw some stickers on it, or paint it, or both. Walkers scream geriatrics and even though he is not well, looking that way only exacerbates the psychological problems that come with it IMO.

After he no longer needs to walker, he may move to using a cane.

I also underwent months of speech therapy. I had to look for a good speech therapist - the first one I went to wouldn't believe that English was my first and only language because it sounded like I had an accent and she wouldn't believe my family about it either - my voice and speech were very strange. She kept thinking I was a stroke patient too. If she didn't believe me about what problems I was having then how could she help me?

I went to another speech therapist who helped me quite a bit. After a while, she told me she wouldn't be able to help me anymore - I have "above average intelligence" and she could only take me so far. You friend may hit a wall in therapy too - there is only so much that they can do - but these kinds of therapy can take him a long way. Again, he should be provided these services by his insurance company. Someone should be asking his neurologist for them.

A lot of cognitive therapy was given to me by the speech therapist too - she didn't only cover my speech.

All of this therapy includes a lot of homework. Your friend will have to do a lot of homework that is tiring or the therapy may not be as beneficial.

It may be too much for him to attend both PT and ST at the same time because of all the homework. Discuss the option of alternating therapies with family and neurologist/Dr.'s.

He can have physical therapy for his neck too. Has a Dr. given his neck a proper MRI? Our necks try to protect our brains in car accidents, which is why whiplash is common. If his brain was injured, his neck may have been injured too. (Mine was - many of our necks here were too and neck therapy seems to do us all a lot of good.)

Work on the pain as you can. See what his Dr.'s think about prescribing him some pain killers until he's better able to analyze it and/or communicate about it. Ask the Dr. to help you figure out where it may be and how to handle it.

If he is getting vision therapy he is in good hands.

The best way many of us have found the best kinds of research for recovering from tbi is through Google and then asking for it. I imagine that actual brain injury centers have experts there who are well versed in this sort of thing. See if he can go to one or cold call one.

I learned about some treatments for a certain kind of injury that I wanted testing for and my neuro didn't even know about it! She insisted that the research I had done was impossible. Eventually, I received the testing through another Dr. and it proved that I needed that particular treatment in order to get better and my insurance company has provided it to me and I'm much better than I was now. But my point is that not all Dr.s know everything and even less of them know anything about it if it's "new" or if it isn't exactly within the parameters of their specialty - which is sometimes difficult for us laymen to figure out where those lines are drawn - so ask them, "would this be considered a part of your specialty? If not, then whom should I speak to about this?"

Recovering from a tbi is expensive. But insurance companies have an obligation to treat the patient.

In CA, we have the option to appeal decisions and then take them to the state board of medicine id we don't like the appeal decision. His Dr.'s should have experience with this sort of thing - my neuro wrote an appeal on my behalf for certain testing that she ordered. There are time limits and deadlines - ask the Dr.'s for help. Maybe you can look these steps up online like you can in CA?

And his insurance contract should have it all laid out what the process is too. If they are being unhelpful, maybe contact an attorney to help you in dealing with them? And make sure you log every phone call and conversation, write down the date, the time, who you spoke to and what they said. They may not be dealing with his case fairly and documentation of that will go a long way.