Topic: Therapy - Progress in Therapy

Question:

My son had a head injury on September 22, 1998. He was a Number three on the Glasgow Scale. He was in a coma for 4 days, awakened and immediately knew his father, mother, girlfriend, etc. He answered the usual questions and after being in intensive care for two weeks, went in for hospital-based rehabilitation, was there for three weeks and physically recovered remarkably well. We've also been told that he has done very well with his speech therapy.

He is now doing speech therapy twice a week on an outpatient basis for 45 minutes each time. He is extremely fatigued, quite depressed, very anxious and worried, has a lack of insight, short term memory and adjustment issues. He is on Zoloft, l/2 per day. Can you tell us if there is anyplace else we can take him. Is this amount of therapy enough? What else can we do to help him get better?

We realize this is a long drawn out process but we also want to be sure that everything that can be done is being done. We have no way to gauge this except to ask the therapist who assures us that he is doing well. Please help.

Mrs. Edward K.

Dear Mrs. K.,

It's amazing to me that the length of time for rehabilitation is so short these days! I'm curious, was he discharged on the basis of being ready to live at at home again, or because funding ran out? I will guess that the funding ran out, since that is often what happens.

My comment that his rehabilitation time appears to be "short" (perhaps "too short"), is based on the length of rehabilitation I, and many of my peers received, back in the early '90's. Many of us were in full-time residential treatment for several months (24 hour-a-day supervision, with up to 6 hours of therapy sessions per day, structured recreation therapy on the weekends, etc.). Also, when we went home, outpatient treatment would often follow residential treatment, perhaps for many additional months. In my case, and in the case of many of my peers I was in rehab with (with whom I've maintained contact over the years), we needed every minute of it! Personally, I cannot imagine how my life would have turned out if I had not received the 14 months of rehabilitation I got! Especially since it took several years after being discharged to put ALL the pieces together!

Amount of therapy time
If he is only receiving two 45-minute sessions per week, I will venture to guess that this is not enough time to enable him to make as much progress as he could make if he had more therapy, or if he received therapy in a setting where he could interact with his peers! When a person has memory impairment, it's not likely that they will be able to connect what they learn from one session to the next if they only have two sessions per week! Too much time passes between sessions, and they don't have an opportunity to do the "massed practice" they need to internalize new skills.

Conceivably, two 45-minute sessions might be adequate if he has already learned some good information retrieval strategies as part of his therapy, because then he has a way to connect one session with the next, and build on a foundation.

Length of time in "rehab"
You mentioned that he had received three weeks of therapy at a hospital after his injury. Again, this was probably not enough time for him to gain much insight into what was and was not working well cognitively (memory, organization, decision-making, judgment, etc.). Many of us with brain injury are on what I call "BI-time," which is different from "civilian time" (the length of time it takes persons without brain injury to learn something or gain insight). It can take us quite a bit longer to gain insight and new skills.

Now, if you have noticed improvements physically and cognitively in this short period of time, this is a very good sign! He is very early in his recovery process and the progress the has demonstrated to date may be an indicator that much more progress could be in his future!

Fatigue, depression and anxiety
Fatigue is common following brain injury. Also, if he is depressed, this would likely contributes to fatigue too! Anxiety and fear are common, as well, and hopefully he is getting appropriate "talk therapy" to help him with these things (with a counselor who has long-term recovery experience working with persons with brain injury).

The best guideline I can offer for dealing with fatigue is to encourage him to rest when he gets tired, and not push himself to do more than he is able. You can also introduce the idea of taking short breaks during the day (including something I call a "cognitive break"), before he gets totally exhausted. These short breaks seem to extend some people's physical and cognitive stamina.

Memory
You mention that he has memory problems. This too, is very common following brain injury. In my experience, short-term memory issues are most often overcome by learning compensatory strategies and tactics. I assume he has been given a "memory book" and that his speech therapist is helping him use it. If not, this is something you might want to explore. If time is limited, the therapist is focusing more on "memory exercises" than compensation. If so, you might want to suggest that he or she incorporate compensation strategies, as well since compensation strategies will be the most useful to him long-term.

Other strategies
With respect to dealing with some of his troubling feelings, you might want to find out what kinds of strategies the speech therapist is teaching him to use to deal with them (more specifically, what "memory strategies" he is being taught for accessing available alternatives when he feels tired, depressed or anxious). When you know what memory strategies he is being taught, you can then support him by cueing him to use them when the therapists are not available. Also, if you will be his source of support after formal therapy is terminated, please be sure to find out from the therapist how to support him after sessions are over. Unfortunately, this transitional step can end up being overlooked, especially if time and/or funding is short. However, it is important for the person's long-term recovery!

Networking with other family members
As far as places to send him, without knowing more, it would be impossible to offer any suggestions. I will suggest to you what I would suggest to members of my own family if they were in your shoes -- and that is to network with other family members who have "walked the walk." Learn as much as you can, both from people in your state brain injury association and from the internet. The national association, Brain Injury Association, Inc., has a website that lists all the state associations. Their website is: http://www.biausa.org

Support and discussion lists for family members, persons with brain injury and professionals can be found on the Internet (generally, in e-mail list forums).

Other Resources
There are no simple answers, and without knowing more about your son's particular situation, it's hard to suggest anything more specific than this. Just know that other families have "been there" and will have insight and support for you. Depending on your resources (especially if insurance has run out), you may want to look into setting up a home-based cognitive retraining program for him, using laypersons as compensatory skills trainers (teaching him how to write use-able Memory Notes, follow through with tasks and activities, plan and follow though with projects, and the like). Retired teachers or life skills trainer with experience in brain injury or other disabilities, are often a good resource. I've worked with a number of families who have done this (home-based cognitive re-training programs), and they can be very successful!

Another resource may be your state's Vocational Rehabilitation office. If your son worked prior to his injury, and is a candidate for returning to work (either his former occupation or a different one), this may be a source of skills training and funding. Again, family members and persons with brain injury who are on some of the e-mail discussion lists can give you ideas about how to work with different state Vocational Rehabilitation offices.

Plan for the long-term
As many of us know, "rehab" (meaning recovery of function following brain injury), is often a slowwwwww process -- it can take years! Even in the best of circumstances, funding seldom lasts long enough! The family may be the only source of support for the commitment needed to help someone with brain injury achieve their full potential.

Please take heart. If your son made noticeable progress early on, more progress is likely possible in the future! Just find out from other what has worked for them! Hope this helps.

Kathy M.

University of Missouri - Columbia
School of Health Professions
Great Plains RCEP