Ask Kathy M. Archives
A Collection of Questions and Answers from TBI Advice Expert - Kathy Moeller

Topic: Therapy - Cognitive Rehabilitation

Question:

Dear Kathy M.,

I got my brain injury from passing out while I was running (I hit my head very hard on the ground, so I guess I didn't try to avoid the fall). I was in a coma for five days and got about three months of cognitive rehabilitation. I moved to a different state, but my relationship with my boyfriend didn't work out, so I'm basically starting my life over.

I never got continuing rehabilitation and my capabilities seem to be less and less. I've been trying to do research, but cannot find anything documenting importance of cognive therapy, both early on and continuing. I'm at my wit's end. Can you help?

Jane


Kathy's Response:

Dear Jane,

I wish there was more documentation "out there" about the benefits of cognitive therapy, but I have not found very much either. The other problem -- even if you do find the documentation you are looking for -- is getting rehabilitation funded at the level you may need, or for the length of time you may need!

Funding for cognitive rehabilitation is not widely available.

Frankly, you are fortunate to have received several months of therapy. These days (with the insurance cutbacks that occurred in the 90's), many people do not get even this much help. Back in 1991, when I received cognitive therapy, I received five months in a residential setting and then nine more months as an outpatient -- and I needed every MINUTE of it! (the cost was several hundred thousand dollars). Things are very different ten years later. Some of the professional literature the insurance companies use to justify not spending money on therapy actually supports the position that therapy is not helpful!

Self Help

Many of us with brain injury have decided to focus on the practical side of things, which means focusing on what works. We have also found that learning from those who have "walked the walk" helps too.

These days, many people with brain injury (and their families) find that they are basically on their own after their injury, or after rehabilitation terminates. Fortunately, with the internet, many of us network together and help each other using what are called "e-mail lists" (support, discussion and teaching lists). This site has a list of these at the following URL: http://www.tbimo.org/groups.asp#internet

Brain Injury Association (national and state affiliates)

Another important resource is our national association and their state affiliates. You can find a lot of valuable information on their website (Brain Injury Association, Inc.). You may even find the kind of documentation you are looking for. See: http://www.biausa.org/

Almost every state has an association too. State associations can be helpful helping you find local resources. A listing of state web sites and phone numbers can be found at the national site, at: http://www.biausa.org/States.htm

Starting Over

Many (perhaps most) of us, who have had brain injury, find we have to start our lives all over again! If we keep our family relationships, we often need to find new jobs (or careers), or move -- all kinds of things! Even subtle lifestyle changes can feel (and be) traumatic, so it's important for us to get support from our peers.

Support groups come in many shapes and sizes. Some are local; some are in cyberspace. Some focus on recreation and leisure; some focus on work or going back to school. The more you network with others who have had brain injury, the more options you will learn about. A good place to start networking with your peers is on one of the peer support groups (mentioned above). I facilitate a support and discussion list called TBI-WORKING, but there are others.

Abilities Seem to be "less and less"

There could be a couple of explanations for this perception on your part. In my experience, this "perception" often occurs when a person's self-awareness increases (which it generally does several months or several years following the injury). This is ironic, because improved self-awareness is a sign of improvement, but because it also means that we can see our losses, improved self-awareness may make us *think* we are doing poorly. Increased self-awareness (sometimes called "insight") can be a double-edged sword, because it may make us think we are doing worse than we really are!

Another twist is that short-term memory problems can cause us to forget our accomplishments. I wrote in a journal from my early days of recovery, and it never ceases to amaze me how much I accomplished early on -- but then promptly spaced! I now have a separate journal called "Accomplishments" just so I can read back over it and not forget about all the things I've overcome as my journey through recovery continues!

Real set-backs do occur, however. If you acquired a seizure disorder (as some people do, following a brain injury), seizures can cause cognitive setbacks. If you are depressed or are stressed, one or both of these problems can make the symptoms of brain injury worse (short-term memory, cognitive fatigue, confusion, frustation, to name several). If you any alcohol at all, drinking (even occassional or what some people might call "moderate" drinking) can have an adverse effect on you brain and spirit, as alchohol can affect the brains of people with brain injury differently than it did before. Across the board, people who have had brain injury are generally advised not to drink any alcohol at all.

There can be physical problems too (changes in our brain). It would be wise to have your physician rule out any physical problems (or your physiatrist if you have one -- that's an M.D. who specializes in rehabilitation medicine).

Work and School

You did not mention if work or school was part of your "old" life. If you are interested in going to work (or going back to work), your state Vocational Rehabilitation office can help you (all you need to demonstrate is documentation of your disability). Every state has local vocational rehabiltation offices (different states use different names for their agency).

Most colleges have disability offices that can help you too (you can start out with one class and see how it goes -- don't forget to learn about what "reasonable accomodtions" are available to you).

Also, I would strongly suggest that you try to avoid becoming too reclusive. This is often a problem following a brain injury. For most of us, it's important to be "out there" doing things that give our lives meaning and purpose. Especially early on.

"BI-Time"

There is something I call "BI-Time"! It's recovery time in brain-injury terms. It is NOT like regular time other people experience. It is LONGER. It is more effort-ful. It's different!

The good news is that if we honor "BI-Time" and give ourselves credit for all our little accomplishments as we move forward through "BI-Time," we can accomplish much. Besides all the new friends you will make, if you start networking with your peers to find out what worked for them, you will get a sense for what you can do to make your "BI-Time" work for you too.

Hope this helps,
Kathy M.

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