MARCH is Brain Injury Awareness Month
Topic: Opinions & Commentaries

This is one heck of a way to start off Brain Injury Awareness Month……………….Recover, QUICKLY????

I love this; we now have reports that indicate the DoD is taking the stance that those who suffer from mild TBI “recover quickly”. It’s not that I disagree with that totally, it’s that, to date, no one yet understands what the long term effects will be of these so called “mild” brain injuries and one “mild” symptom can be totally debilitating! Every time someone makes a statement like this; the ones who don’t recover “quickly”, pay the price!

Larry Scott did such a good job of putting these articles together and I think Larry’s got it right with the title; DoD TRIES TO PUT FAVORABLE "SPIN" ON TRAUMATIC BRAIN INJURY FIGURES –

Vist VA Watchdog to read the full stories; http://www.vawatchdog.org/09/nf09/nfmar09/nf030709-1.htm

General Sutton’s assessment of; “90% of servicemembers with TBI have concussions and recover quickly” has me confused and I’d actually like to know where they are getting their numbers. Every bit of research I have found says that upwards of 60% of patients who sustain a mild brain injury continue to experience a range of symptoms called "post-concussion syndrome," for as long as six months or years after the injury. And other research indicates a higher incidence of other related issues as the mild brain injury, ages;

http://www.time.com/time/health/article/0,8599,1708624,00.html

http://www.neuroskills.com/pr-parkinsons.shtml

http://www.scienceblog.com/cms/mild_injury_may_render_brain_cells_vulnerable_to_immune_attack

 

What is it that drives the AVBI organization?
Topic: Opinions & Commentaries

I was recently asked; what is it that drives you and the AVBI organization? So I thought I would share with you a little story…………

In 2001 when my son was at Walter Reed for the second time; after nearly 10 months of medical treatments, brain injury rehabilitation and therapies, we were waiting for the medical board to make a decision about his medical retirement. My Son and I had met another soldier, Eric, who had also suffered a severe brain injury when his parachute had gotten caught in a helicopter blade during a training mission. I watched this young soldier for weeks, he would dress each morning in his BDU’s and tattered beret to stand in front of the hospital entrance, waiting for the opportunity to salute Officers as they entered the hospital. I asked him one day what he was doing; his response to me, was “manning my post, mame”.

Chris was medically retired in April 2001 and we came home to Florida. Every time I fought for new opportunities for my own son’s recovery, the thought of what had happened to Eric would cross my mind. Chris and I went back to Walter Reed in the Summer of 2002 to visit, and Eric was still there. The results of his brain injury had left him without a mission and the bureaucracy of paperwork left him on Medical Hold in the grips of a system that didn’t know what to do with him. I was furious and broken hearted knowing that this soldier could have been my own son. I couldn’t do anything to help him at the time and yet the vision of him standing in front of Walter Reed haunted me for years. I tried constantly to track him down and find out what had happened to him, but all the information I had led me to dead ends.  So I guess it was because of my constant comparison of how Eric was treated vs. my own son, that I found myself fighting the bigger battles. 

I became a loud and strong voice for better treatment of TBI wounded. I started reaching out to other families in hopes that we could find ways to help one another. I started a web site to try and find the lost soldiers like Eric, because he was the reason I was driven. My son would be ok, I would see to that, but it was the “Eric’s” that kept me up at night. I met many other family members who were constantly searching for answers and I found purpose in sharing the information that I had learned, and together we all found comfort in offering peer support to one another.

This past year, through the AVBI.org web site, I got an email from a rather desperate wife asking for guidance & help. I contacted her and did what I could by using the connections that I had made over the past years to help her, and help her husband. The results from the email and those phone conversations have been rather amazing. I’ve learned that her husband is now a volunteer training service dogs for veterans; he also went skiing, met new friends and seemingly has a renewed and positive outlook on life. Now here is the kicker; her husband, the soldier, is Eric……. Yes; the Eric that my son and I met at Walter Reed…. 

So the reason I decided to tell you this story is to remind you, that there are many brain injured Veterans who do not have advocates and there are also many family members who are tired of fighting the bureaucracy and just don’t know where to turn. So now that I’ve shared this story; I’m asking each one of you to PLEASE pass on the AVBI.org information to everyone you know. AVBI can only be effective if we can find the ones that need us most.

Where does a person turn???.?
Topic: Opinions & Commentaries
An example of how families are left to their own resources…………

 Over recent months I had been very troubled by one particular TBI veteran, one who had been slipping further and further away from becoming healthy, both physically and emotionally. While trying to help this family it came to my attention how few facilities in this Country can handle the compounding effects of brain injury, including behavioral issues and/or combat related PTSD. Although the VA runs inpatient facilities for PTSD, I’m not too sure they can even handle the Veterans who have a brain injury or complex medical issues, when added to the PTSD. BTW: they currently have 3-6 month waiting lists for the PTSD inpatient programs.

 During the process of a few weeks we had numerous intelligent individuals researching, calling, and visiting different rehab facilities to find one that could handle the complex problems of TBI AND PTSD. Sadly we all felt like we’re looking for a needle in a haystack.

 Dealing with a brain injury is difficult for anyone, and rightfully so, but what we have right now is scores of individuals who have served our Country, suffering with complex problems….. and families are left to try and find help on their own. Granted there are new; programs, web sites, organizations and agencies being made available to our wounded each day. But for those who have been wounded prior to these programs being started, they rarely have knowledge of the programs existence.

 Fortunately; the family I’m speaking of, was eventually able to find a suitable inpatient placement for this TBI soldier, but I have to wonder.... how long will it be before we hear of another family who is looking for the treatments that seem rather impossible to find?

Hence the question; where does a person turn?

Veterans Families Seek Aid for Cargiver Role
Topic: Opinions & Commentaries

An article was published in the New York Times on Tuesday November 11^th, and although the article does not portray what some of us had hoped for, it did manage to touch on the subject of caregiver compensation. The full article titled; Veterans’ Families Seek Aid for Caregiver Role can be read online @; http://www.nytimes.com/2008/11/12/us/12veterans.htm

Obviously there is a lot more to the story than what was written, so I would like to share some of my thoughts.

First; the article did not clearly explain the reality of what a difficult situation this really is, nor did it offer the current VA regulations and/or the shortfalls with the implementing of those regulations.

As many people may already know; family members are providing the necessary daily care and support to our wounded veterans. Some veterans are awarded Special Monthly Compensation (SMC) also known as Aid & Attendance (A&A) and that may in fact help reduce the financial burden, but more often than not, this compensation is not awarded or does not completely cover the expenses related to providing quality care.

One side of this story comes from those people, like me, who have had to provide aid, attendance and daily support to a veteran who is incapable of living independently. The regulations for A&A are commonly limited to physical impairments, most of which state loss of use (LOU) or the inability to perform activities of daily living (ADL’s), so veterans who can feed, cloth and groom themselves are not awarded SMC. This is often the case of many brain injured veterans who have cognitive impairments, verses physical impairments.  Interestingly enough, there is a couple of additional questions on the VA's A&A evaluation form that are commonly overlooked, they read; 1. Can patient live alone? 2. Does patient need another in protecting himself/herself from the ordinary hazards of his/her daily environment?  Keep in mind; as in every regulation in the VA, these are left up to the interpretation of a VA evaluator. And just to make myself clear; to date, my son Chris, a veteran who suffered a brain injury and can not live independently, has not been awarded A&A, as we were told by a State VA representative, he was not entitled.

To explain the use of SMC, also known as A&A, I can put it in this simplistic way; the additional award of SMC is provided by the VBA as compensation to allow the disabled veteran the means to pay for the services they can no longer do for themselves, as a result of service connected injuries. A couple examples of how SMC or A&A could be used are; if the veteran can not maintain their own home, SMC affords the veteran the ability to hire someone for those tasks. If the veteran can not travel independently, SMC affords the veteran the ability to hire someone to accompany them.

Another side of the story comes from the family members who are proving 24 hour care. Of all the families I’ve met over the years, the ones that rip my heart out are the families who are providing 24 hour care to a seriously wounded service member. Severe injuries have left many of our wounded veterans incapable of caring for their daily needs, and family members are the ones who are tending to these wounded. Case by case these stories have been told by the media, but I’m not to sure most people get the gravity of what this care entails. Those veterans who have been left with the inability to; walk, talk, feed themselves, or have self control of their bodily functions are at the mercy of those who love them, and in doing so, a spouse, parent or sibling is forced to leave his/her job to provide the necessary care to their loved one. Leaving the entire family to suffer from an adverse economic situations, is just one of the difficulties, most of these family members spend countless hours trying to find good healthcare professionals to help them. In many of these cases finding proper help is impossible and the family comes to the conclusion that they, themselves, are the best option to provide quality care. These family caregivers have developed the critical skills to provide the veteran daily care, but, they have been denied financial compensation for such labor. The alternative to 24hour in-home care by a family member is these wounded veterans would be placed in skilled nursing facilities, which are not only inappropriate for our young veterans, they are very expensive for the VA. One example is the story portrayed, in the NY Times article about the Keil’s, yet another example can be read in the eloquent testimony provided by Anna Frese, about her own family, during Legislative Hearings on H.R. 3051 on Sept 9^th 2008. http://veterans.house.gov/hearings/hearing.aspx?NewsID=299 (Mrs. Frese’s testimony is the last on the page)

The Caregiver Compensation we have been hoping for is totally separate from VBA benefit of SMC, and this is where it gets a little confusing to most. VHA benefits will contract and pay for services that need to be performed for the health and well being of a wounded veteran, yet family members who are performing those same services can not currently be paid by the VHA. These families are not a bunch of ungrateful money hungry people; they just want the opportunity to provide the best possible healthcare options for their loved one. In some cases, the best option is for the care to be provided by a family member, and that’s when we want the VA to recognize that service and pay the family member rather than paying an outside contractor. Not only would the veteran get the care they require, the care would be performed with consistency and dignity in a compassionate and loving way.

The third part to caring for our wounded is the need for appropriate respite care. Current regulations only provide relief, to the caregiver, by placing the wounded veteran in a skilled nursing facility or group home. As in the case of Sgt Ted Wade, the only way for Sarah to get a break from assisting Ted, is for Ted to be placed in an outside facility, at a cost of $857 per day. A reasonable and cost effective alternative would be for the attendant services to be provided in Ted’s home. If Sarah Wade or Tracy Keil were receiving Caregiver Compensation they would be able to hire temporary help and actually have the means to pay for those services in their absence.  

The cost to the federal government (the tax payer) would be much less for Caregiver Compensation than the current costs of contracting professional health care providers to come into the home. And respite care could be hired, as needed in the home, rather than shipping the veteran off to be cared for. This is not only smart business; it’s the best option to provide dignified and quality care to those, veterans and their family members, who have already given so much.

War Veterans? Concussions Are Often Overlooked
Topic: Opinions & Commentaries

 

New article in the NY Times talks of how often concussions are overlooked, yet they continue to use the word “mild”. Personally I’ve always hated the terms mild, moderate and severe, when describing brain injuries because to those who suffer any brain injury, the residual effects can be devastating. The injuries described in this New York Times article are NOT minor, they are major and a prime example that the use of the term “mild brain injury” is an oxymoron.

 Clipped from NY Times article:

………..more than three years after coming home, Mr. Owsley’s days have been irrevocably changed by the explosions. He struggles to unscramble his memory and thoughts. He often gets lost on the road, even with directions. He writes all his appointments down but still forgets a few. He wears a hearing aid, cannot bear sunlight on his eyes, still succumbs to nightmares and considers four hours of sleep a night a gift.

Mr. Owsley is part of a growing tide of combat veterans who come home from Iraq and Afghanistan with mild traumatic brain injuries, or concussions, caused by powerful explosions. As many as 300,000, or 20 percent, of combat veterans who regularly worked outside the wire, away from bases, have suffered at least one concussion, according to the latest Pentagon estimates. About half the soldiers get better within hours, days or several months and require little if any medical assistance. But tens of thousands of others have longer-term problems that can include, to varying degrees, persistent memory loss, headaches, mood swings, dizziness, hearing problems and light sensitivity…………….

Full article can be read here: http://www.nytimes.com/2008/08/26/us/26tbi.html

What’s also disturbing about this article is not one time do they refer to what's being done (or what can be done) to help Owsley, Lane, Woods or the other 33,000 they mention. Sure diagnosing the injury is the first step but then giving them proper treatment and the tools to rehabilitate, should be the next. The DoD and VA are having a hard time taking care of the brain injured patients that come in on a gurney, what’s happening to the ten of thousands that walk in the door?  

Memorial Day: Honoring all our Veterans, who have paid the ultimate price...........
Topic: Opinions & Commentaries

Today, Memorial Day 2008, as our Nation honors those who have paid the ultimate price for their service and sacrifice to our Country, I am reminded that in a place far away from my current home, a new American flag was placed on my Father’s grave. I am writing this to honor him and all the other Veterans who have died as a result of their service to Country. 

It is all very sad to be reminded of those who have paid the ultimate price yet to honor their lives and sacrifice we all must keep them in our hearts and minds, and be reminded of them each and every day...and not just one day a year. These are not just the fallen heroes of past and current wars, but they are ones whose lives were changed because of their time in service. I’m referring to those who may have survived wars, but came home battling the lasting effects. Those who because of; nuclear exposure, Agent Orange, asbestos, foreign soil bacteria’s, or the emotional tribulations of PTSD, were overtaken by their illnesses. These are the ones whose names are not decorated on the walls of our Nation’s monuments and no Purple Hearts were ever awarded. So on this day that we honor our fallen heroes I ask that you not forget these men and women. I know I will not, as one of these men is in my heart forever…..

Capt. Stephen Reed Moore, USAF (deceased)

1941 July 7th Entered Service during WWII, as an Enlisted Pvt.

1956 Dec 25th admitted Walter Reed Army hospital, Died Jan 1st 1957 as a Capt USAF.

75 Senators Stand With Veterans: GI Bill Passes in a Landslide
Topic: Announcements

This proves both sides of the Senate can play nice together and do what's right for our veterans! Well done for a change.................

May 22nd it was announced that, three-quarters of the Senate voted to support a new GI Bill for the troops returning from Iraq and Afghanistan. Following the 256-166 victory in the House last week, the GI Bill has achieved almost unparalleled momentum. A number of Senators actually changed their NO votes to AYE, as it became clear that this vote was going to be a landslide: 75-22.

Read more here on Huffinton Post: http://www.huffingtonpost.com/paul-rieckhoff/75-senators-stand-with-ve_b_103155.html 

 

Bob Woodruff and ABC Follow-up Story
Topic: Opinions & Commentaries

March 20 2008 ABC and Bob Woodruff Report

Why Soldiers With Traumatic Brain Injuries and Permanent Handicaps Are Considered Partially Disabled.

 The printed article can be found here http://abcnews.go.com/WN/WoodruffReports/story?id=4489740&page=1

May 11th 2008 Senate hearings...........Again
Topic: Opinions & Commentaries

I find the following story is very interesting and yet I’m not surprised. Hearings, commissions, reports, and personal testimonies, have been an ongoing thing for years, yet I think we all need to ask; what is REALLY being done?  Yesterday’s testimonies provided by; Peter J. Bunce, Colonel USAF (Retired), Robert Verbeke, and Jackie McMichael, could be a carbon copy of hundreds of stories told before and probably the same stories we’ll hear in the future. Specific details may be different, but over all the stories are the same; Families doing the job that the DoD and VA should be doing.

Tuesday’s Hearing Testimonies can be found here: http://senate.gov/~veterans/public/index.cfm?pageid=16&release_id=11536&view=all

Defense, VA lay out plans to improve health care for wounded soldiers

By Bob Brewin

 Full Article can be found here: http://www.govexec.com/story_page.cfm?articleid=39502&dcn=todaysnews

Top officials from the departments of Veterans Affairs and Defense said on Tuesday that they plan to improve the health care for troops wounded in Iraq and Afghanistan by providing them with "a life map for recovery" that integrates all their heath records into one package and lays out a listing of follow-up services. (Clipped)

 BUT... Here is the key factor of the whole article; “VA did not return calls or e-mails asking when it planned to have the eBenefits portal in operation.” Another words, we (The VA and DoD) all know how screwed up the system is, and we’ve provided the “plans” for what we “plan” to do, but we have no idea how or when we’ll be able to do it! 

The VA and DoD have been “in the process” of merging health care records/systems for years now, but control issues, software incompatibilities and arrogance (about which system is better) have lead to nothing being done.

 Personally, I doubt they are capable of mapping anyone’s life for recovery, for now (and for years to come) the care and support for our wounded will continue to be handled by the families.

A brain injury is not is not always diagnosed or immediately apparent.
Topic: FYI
There are many cases where a person who has sustained a brain injury appears fine, but family members, friends, and fellow soldiers see symptoms* and know that something is seriously wrong with them. This person may have sustained a brain injury that was not diagnosed or is labeled “mild”. It is considered mild because the person may appear normal on the outside. Know that the term “mild brain injury” is a misnomer because the consequences of the “mild brain injury” may be devastating for that individual and their family. These are very difficult situations for the brain injured person because they often know their behavior is abnormal but can’t control it. Yet, others may attribute their behavior to wanton disregard for authority, a flawed character, or in the case of soldiers, may think the person is suffering from Post Traumatic Stress Disorder (PTSD).

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* Symptoms of Brain Injury; Altered State of Consciousness, Loss of Consciousness, Memory Loss - either short or long term memory loss, Headaches, Dizziness, Vomiting, Blurred Vision, Loss / partial loss Sense of Smell, Loss / partial loss Sense of Taste, Loss / partial loss Vision or Hearing, Sexual dysfunction, Speech Problems, Confusion, Fatigue, Sleep Disturbances - inability to fall asleep or stay asleep, or nightmares, Irritability, Depression, Mood Swings, Loss of Anger Control, Anxiety, Inability to Concentrate, Inability to make decisions, Increased sensitivity to light, Increased sensitivity to noise, Increased sensitivity to movement,Decreased intellectual ability, Math abilities affected, Lack of interest or desire to participate in life.