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Topics/Discussions to Include in Nov Conference

eegrobert
2 Recommendations

Hello everyone. I am planning a presentation on "Overcoming Anxiety, Frustration, Anger & Depression - Critical Skills to Learn in Brain Injury Rehabilitiation". Although it was originally created to help folks deal with changes following traumatic brain injuries, apparently much of it deals with issues following encepahalitis (and tumors, chemo, PTSD, abuse ...). I would appreciate it if you could tell me about things you have had to deal with, or other issues following encephalitis. Then I can tailor my presentation towards your specific issues. Thanks and I look forward to meeting everyone. I am hopeful that they will be able to post at least part of my presentation on the web (if it is seen as useful to all). Take care.

Bob Hamilton

Explore topics in this discussion:

Counseling Brain tumors Meningitis Penicillin Stroke Meditation Anxiety Traumatic brain injury (TBI) Memory Encephalitis Depression Acupuncture

17 replies

WendyStation

Hello Bob! Excellent idea to request input from folks attending!

Just a reminder that our FACES Encephalitis Conference is set for September 18th through 20th. For more information about FACES, click http://www.encephalitisglobal.org/FACES2009Conference.asp .

kellys_mom

Kelly is looking for suggestions to answer people who tell her, "You look okay."

Linda

eegrobert

Linda & Kelly;
That is the main reason that brain injury (and an medical procedure or infection is a brain injury even though most folks do not look at it that way) is not recognized and understood by lay people and even professionals. If someone says "you look (or act) normal"- if it is someone you think will listen - explain that the brain controls everything in the body. A small hit on the head, an infection or toxic exposure can change everything and make the brain work differently, even though the person looks "normal". A person can look perfectly OK, yet have memory problems, get confused easily, have emotional fluctuations, be sensitive to light or sound, etc. And it may vary from time-to-time. If it is someonw who will not listen or does not count - do not even bother with a long explanation. Just say the brain can be significantly affected with no external signs. Please email me if you would like me to send you some more. eegrobert@sbcglobal.net. Take care and good luck.

Lil

Thank for for a great way to explain we may look normal but we aren't!.

For those of us who will not be able to attend, is there a way that you can share your discussion with us? Maybe a cassette/cd copy (if it can be recorded) or a written summary?

I've only be able to attend one conference and it was WONDERFUL! I cannot afford to attend because I'm not on Social Security Disability. The information I received at that conference was very beneficial because I was not even a year into my survival.

Thanks for considering this.

(Wendy/Ingrid.. maybe one of you could record it??)

Blessings,
Lil

eegrobert

I understand that my PowerPoint presentation probably will be available via this web site. I can email it in advance to those interested - even if you are attanding the conference review of the main points may bring up very useful questions or suggestions. Following brain injury many time it is often very difficult to quickly "bring up" memories and other cognitiive processes; but a small "reminder" can trigger ideas that were not previously easily accessable. If you wish please email at eegrobert@sbcglobal.net and I can send lots of information.

P.S. If they wish to post any of my stuff on the web site please let me know where to send it and I will. Thanks a take care.

Bob

Joey_sMom

1. How can caregivers help survivors "let go" of the anger/frustration caused by their losses?

2. How can caregivers help survivors feel more independent?

3. How can we identify when a survivor has reached the point of needing professional help dealing with the anger/frustration?

4. How can caregivers help survivors move past being fixated on what is wrong or what went wrong?

5. How can caregivers help survivors acknowledge the positive things in their lives?

6. I understand brain injuries can cause symptoms that mirror PTSD while it is not truly PTSD. Is there a difference in treatment or is it treated the same way?

Okay, obviously I have tons and tons of questions but I'll try not to "hog" the entire presentation with my specific issues and just stop here :) I won't be able to attend the conference, but wish to sincerely thank you for agreeing to speak there.

Vicky
Caregiver

muzzamo

I have found books on the topic of Mild Traumatic Brain injury to be VERY useful in recovering from encephalitis.

For those who don't know, MTBI is often associated with car accidents, whiplash, etc but the symptoms are extremely similar to encephalitis afaik.

There were no useful books on recovery from encephalitis on amazon but there were several on recovery from MTBI and they have been very, very helpful.

So I'm not surprised that you have a presentation that applies to both.

curlycanuck

My body overreacts to the emotions I am feeling since most communication is nonverbal many people will then overreact. How do I get them to stop and listen to what I am saying and doing which is appropriate to the situation rather than what they think is happenning.

Lil

I also have problems with my emotions. Not overreacting but just the opposite. When it's appropriate to cry I can not, when I should be very angry, I'm not. Laughter doesn't seem to be a problem. I love good jokes and can laugh when the situation merits it. But feeling sad, down, etc (I can't think of the words I want) I just don't feel them. Last month I attended a funeral of a friend. I knew I should be sad, but there was nothing....no emotion at all. 2 years ago I got divorced after 29 1/2 years.. again no emotion.. I thought about how sad I should be, how upset I should be, even how angry I should be, but there was NOTHING!!

I can sort of rememer that I could cry at the drop of a pin, but no longer. This can be very frustrating!!

Any comments? Any help?

eegrobert

Wow! Thanks for all the very appropriate comments and questions. I will try to give some information here but much of these will be addressed more in my talk and other papers and talks I (and others) have given. I can forward them later if interested.

Let's see - where to start? In many cases a brain injury (I will use that term to include "congenital", "PTSD", medical interventions, infections, etc. because I believe that in many/most cases all are an injury to the brain and look similar in an EEG brain map) will cause a very large change in the ability to control our emotions and "impulses". In the majority of cases we lose control over our emotions and cry much more than before, sometimes over "nothing" (but this is usually something from our unconscious). However, this can also be very fast swings from perfectly calm to furious enough to kill someone over "nothing", then often just as fast back to calm. If confronted the person will often deny the outburst.

As one of our members mentioned this can also result in flattened emotional responses. The important thing to remember, especially for family members, is that NONE of this is done with forethought or intentionally – it is a result of physical injury (usually to the functions of the frontal lobes which control our higher lever brain functions). This is one of the reasons that a number of very controlled studies have shown an extremely high percentage of those in jails and prisons had a traumatic brain injury (TBI).

We lose our “common sense” and often do “really silly things”. I know that prior to my brain injury I was an extremely high performer and very controlled – yet after my injury no matter how hard I tried I could not control previously “simple” or “obviously important” things. Often I tell folks that many of the “dumb” acts that are so popular on “reality” TV shows are done by folks with these types of injuries. If a person has a impulse control problem because of injury, when they are standing in line at a bank (for instance) and see all that money – all they can think of is that they need that for food/housing/?? and they may take some – never thinking that there is an armed guard behind them. Or may blurt out whatever comes into their head without thinking of the effect or consequences. An example of this is where a man says to his wife that her hair or dress is ugly, without thinking that he will be sleeping on the couch and eating dog food for the next week! (Sounds made up but something like this happens all the time with injured folks and can lead to serious problems.)

To be continued. Thanks.

Bob

eegrobert

Excellent comment regarding Mild Traumatic Brain Injury (MTBI). (I often say to professionals that these terms -mild, moderate, severe - are misleading and say that the only person who ever gets a "mild" brain injury is someone else. If it happens to you, it is everything but "mild".)

People do not realize how many things in their life that they take for granted. Usually we think of material things when we hear this, but think of all the “treasure” we have stored in our brains. We have a lifetime of learning, of experience and beliefs (some good, some not so good), and ingrained habits (again some good and some not so good). When the brain is significantly compromised, almost everything changes for us. Nothing is quite like before. I tell folks that a brain injury is the worst disability you can have – you lose your abilities and in many cases your identity. Rehabilitation often requires you to “relearn” and to overcome many negative factors trying to sabotage your "recovery" – often your own subconscious and emotions.

I used a number of publications aimed at rehabilitation for MTBI very successfully in rehabilitation after brain injury. They are especially useful for previously high performers with MTBI. There is a MTBI Workbook (paperback) that is very useful. I am in NY right now. When I get back to TX I'll look over my library (about 1000 publications) and post some that I have found useful in my rehab and in doing therapy with others.

A year ago I started a non-profit (the Center for Brain Injury Education) to fill in gaps in the various private, State and Federal organizations - some of the gaps are huge - there is little coordination or communications. Many of these disconnects are caused by politics, economic concerns and egos. Although the web site is just started, I scanned in hundreds of periodicals/books that were useful and plan to have reviews of each. However, I have been so busy this has just been started and needs a lot more work. I get hundreds of emails and letters every week from folks looking for assistance and do my best to try to help.

Take care and good luck.

Bob

eegrobert

Professional help - when to get it and who to pick. This is one of the easiest yet most difficult questions to address.

First the easy part. If a person has significant brain injury and behavioral/emotional issues a professional is necessary as soon as possible in most cases. One of the tenants carved in stone regarding counseling and therapy is that you do not treat anyone who is close to you (i.e. family member, relative, loved one). This seems strange at first but many years of counseling and therapy have shown this to be good advice. First, they are “too close to the problem” – the crux of the issues are shrouded in years of relations (good and bad) with the other person and are “hidden”. Many important factors are misinterpreted or not seen clearly. A “fresh look” is needed. Secondly, family members are not trained in counseling/rehabilitation techniques and may have improper knowledge and try “lay” rehab techniques that can be harmful. Lastly, the other person is likely not to “pay attention” to what a family member tells them. I have often seen professionals tell clients the same information as a family member has been saying (sometimes in virtually exactly the same words) and have it “take” – whereas it had been previously ignored.

Now the hard part – who to pick. It is very difficult to find a counseling professional who works effectively with brain injury. Usually the first thing that needs to be done is an assessment of the actual deficits and issues that the injured person is having – and it is often not what appears obvious on the surface. Neuropsychologist are the professionals most trained and experienced with brain injury and assessment. They are the ones who usually do assessments and many times are the best source of knowledgeable rehabilitation. A full assessment take one and sometimes two days and is relatively expensive. However, it gives a roadmap of the areas needed to be worked on, tailored to that person, for maximum recovery. However, the rehabilitation offered by neuropsychologists may be quite varied in its effectiveness and understanding of post-injury issues.

Your most useful asset in obtaining the best professional help is knowledge. You need to educate yourself on the possible aftereffects of brain injury (your loved one may have some of these that you are not aware of), various rehabilitation and medical approaches for these, and your resources for medical assistance (carefully review your insurance information, use their resources to help you, look at state, federal and local programs and resources). Then look at the available professionals in your area (or if you are able to travel look at appropriate areas) – but do not be too impressed at the advertisements or “ratings” of professionals, because in brain injury many of these may be misleading. "Interview" potential professionals and programs - prepare a series of questions to probe their depth of knowledge about brain injury. And talk to other survivors and family members, often reachable through support groups. Not all inputs will necessarily be accurate but you can gather good information this way.

One of the most important things to do as a caregiver/family member is to take care of yourself. It is so easy to get overwhelmed and to forget to take good care of yourself. This is critical because you cannot help if you beecome ill. And the more stressed you become the more likely it is you will forget or misinterpret something. Take time for yourself when possible and "get away". Investigate "respite" services in your area if needed - the need for "relief" is finally being recognized and there are resources for this in many communities.

I have talked for hours on this subject so these are just a few comments. Maybe we can address this more later. Thanks for your important question.

Bob

Note that everything that I say herein in my comments is my personal opinion, not medical or counseling advice. Even though I am a counselor and a survivor it is not necessarily correct and may not apply to your situation.

DVirginia

Just a quick comment - I noticed that in the UK and Canada, brain injury organizations are using the term "acquired brain injury" and they are lumping together TBI, encephalitis, meningitis, stroke, brain tumors, etc. in their missions. (Acquired - meaning - you didn't have it when you were born, it was acquired later)

It seems like in the US there are a lot of TBI-based organizations - any chance these orgs will move toward including other acquired brain injuries? Anyone involved or have a sense of that?

Thanks!

eegrobert

I have been fighting those limiting definitions for some time (and prior to that I was saying that "head injury" was not "brain injury" but was ignored for years until, for some reason "they" saw the light and changed the name - but not medically - they often still use head injury).

The sad thing is that if you do a periodical or data search using “head injury”, “open head injury”, “closed head injury” and/or “brain injury” in professional medical databases (I used the University of Texas Southwestern Medical School’s for several months of research) you get completely different results – and all often are just forms of “brain injury”.

I believe that brain injury should include the many variations of it. In many of my professional presentations (usually about EEG) I put up a definition of brain injury as "Any event or series of events that causes a sudden and lasting change in the EEG that results in significant non-transient behavioral changes".

The problem with almost any definition of brain injury currently in use is that the diagnostic used by the vast majority of professionals (all but the very knowledgeable) is behavior – which overlaps any of the Axis I or II diagnoses of the DSM used by counselors and psychologists. A look at the reliability and replicability of counselor/psychologist diagnoses in all but the most severe cases shows that there is not much consistency in their diagnoses.

I have been searching for over a decade for physical markers that can be used along with behavior to diagnose brain injury. So far the only promising one has been the EEG. But not a standard 2-3 lead reading – a 19-23 “brain map” and comparison with previous EEGs of the individual or databases of EEGs of various brain injuries. However, this has not yet become accepted by the medical or counseling community. There is some high-tech research for physical markers but to my knowledge no significant investigation of the EEG by medical organizations.

Thanks for the comment.

Bob

DVirginia

Really interesting stuff. My son had encephalitis at age 6 - he's 8 now. I find that using the words "brain injury" gets me much further in conversations with teachers, counselors, etc. about his residuals than just saying he had encephalitis and trying to explain what that means. It seems like the general public has a better sense of what a brain injury might entail, so I don't have to jump so many hurdles to get them to understand what he's going through.

How can we encourage the use of one term? Or, how can we push brain injury orgs to include encephalitis in their missions? It seems to me that encephalitis could get a lot more exposure if brain injury orgs are more involved. Is that a good thing? what are the pros and cons?

I'm really curious what people think about this...it seems to me that our biggest challenges over the years have been dealing with people who've never heard of encephalitis and its effects. The more info out there the better, right?

eegrobert

Acquired and traumatic definitions are also often used in the US. However, even in those definitions there are many brain injuries omitted (please look over my presentation for elaborations). As far as I can see, the reasons for many of the strict definitions and failure to consider other types of brain injuries is often directly tied to economics – what they are called and coded controls who pays and what is paid for services. I feel that many of the medical and counseling treatments in the US are not what works but what is paid for and by whom. I am a bit prejudiced – I have traveled the world, observing low-tech techniques that “work” inexpensively for chronic issues that require expensive and often non-successful treatment in the US, trained in “non-approved” procedures (acupuncture, meditation, and herbal medicine) overseas, and successfully used many of these in my own rehab.

It is amusing to me that some of the most expensive high-tech medical techniques used extensively in the US (such as transplants, angioplasty, reduction of colon length, multiple bypass operations) have never been subjected to “double-blind studies” and often have statistically questionable effectiveness. Yet rigorous double blind studies are required of techniques that have been shown to be effective over thousands of years in multiple cultures. Both the doctor and patient must not think their treatment is anything other than what they were told experimentally (i.e. treatment or placebo) or an experiment is not “double blind” – many “non-traditional” (actually traditional – modern medicine is non-traditional) treatment studies, started as “double-blind” studies fail because one or both participants realize they are getting the placebo – invalidating the study.

Some of these "non-traditional" approaches are being recognized by “alternative” or “complementary” medical groups in this country, however, the process is very slow. We spend millions of dollars on very expensive high-tech research to “find a cure” for many ailments, but we often spend hardly any money on passing laws or evaluating/enforcing existing ones that reduce injuries and illness (helmet, DUI, seat belt, sobriety checkpoints), and educating individuals on healthy life choices and professionals how to treat many ailments in effective manners without pharmaceuticals. (you can see signs and warnings everywhere about seat belt and DUI - yet enforcement and penalties are sometimes nonexistant in many places).

Much of this failure to embrace other therapies has to do with the Medical-Pharmaceutical Industry, but much also is due to the “rush” we are in – other treatment modalities sometimes take longer than drugs, the “doctor heal me mentality”, and failure to participate actively in our rehabilitation/healing. Following many brain injuries there are no medical procedures to “fix” us as before. All an outsider can do is give suggestions and provide a safe environment – it is up to us to try out various techniques, see what works with us, and revise any negative or unhelpful thinking or behavior that is holding us back (for many time we are our worst enemy).

The trick is to get accurate information soon enough and to stay encouraged.
Thanks

eegrobert

Getting organizations to cooperate is a difficult thing, even if their "mission statements" are almost identical. Sometimes when I get frustrated at the difficulty of getting people to update the teachings and “knowledge” from years ago, I ask the audience “What is the single thing medically that has saved more lives than anything else?” Invariably they respond antibiotics or penicillin. I answer that they are second to having doctors and surgeons wash their hands. I then ask “Do you know what happened to the doctor who proposed that?” He was laughed out of the medical profession and died in a paupers’ prison. In some ways the medical profession is the same today – standing in concrete unless it involves very expensive high-tech “new” things.

As far as the operation of the brain, injury effects and rehab potential are concerned, almost all the “old knowledge” is wrong. Only in the last 5-6 years or so has significant research been done on the brain using fMRI and SPECT equipment that looks at the metabolism of the brain while awake and doing cognitive processes. Prior to that the “knowledge” of the brain came from operations or wounds in particular areas – whatever the person had issues with was assumed to be done in that portion of the brain. Now they have discovered that much of that “knowledge” is false – yet most professionals and teachers still spout that old information.

I believe that the entire “secret” to getting more cooperation in all areas is communications. However, many organizations have internal hierarchy and politics, sometimes with sub-agendas that may not match the actual or perceived mission of the organizations. In over 13 years of traveling the US and overseas, attending and speaking at conferences and trainings, visiting various State, Federal, for-profit and nonprofit groups who proclaim to serve various brain injury populations, I have observed a general lack of coordination, and an unwillingness to share information or embrace good material from other sources; this is true even within larger cities. That is why over the past 14 years I have consistently tried to visit a variety of organizations, gather information and share it with all. The Center for Brain Injury Education was started to enable this to happen.

I wish I had a magic answer to getting better coordination and cooperation. It is needed desperately because the people that are hurt by the current disconnects are the very people who need help the most – injured folks and their families.

Bob

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