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October 5, 2010

12:01
P.M.

Traumatic brain injury: Coming home a different person

Total Responses: 19

About the hosts

About the host

Host: Cheryl Lynch

Cheryl Lynch

Cheryl Lynch is the founder and executive director of American Veterans with Brain Injuries.
Host: Tracie Lattimore

Tracie Lattimore

Tracie Lattimore is special advisor to the director of the Clinical Affairs Defense and Veterans Brain Injury Center (DVBIC).

About the topic

Cheryl Lynch, mother of a traumatic brain injury (TBI) patient and founder and executive director of American Veterans with Brain Injuries, will be online Tuesday, Oct. 5, at Noon ET to discuss her Web-based peer support network for American war veterans.

Joining Lynch will be Tracie Lattimore, special advisor to the director of the Clinical Affairs Defense and Veterans Brain Injury Center (DVBIC).

The Cost of War: Traumatic Brain Injury

Photo Gallery

Q.

Cheryl Lynch :

I’m Cheryl Lynch, the mother of an Army veteran who suffered a brain injury while in the Military. After meeting other veterans, who had suffered a brain injury, and their family caregivers I was compelled to share our knowledge and experiences and started the organization American Veterans with Brain Injuries (AVBI.org). I'm here today to answer any questions you may have.

Q.

VA?

How in the world will DoD and the VA be able to hire enough doctors to handle the huge influx of TBI, PTSD and all of the other long-term effects of fighting in Iraq and Afghanistan? There just don't seem to be enough of these doctors, even in the private sector (via Tricare) to handle the volume.

A.
Cheryl Lynch :

I’m sorry I don’t have a better answer for you but I am hopeful that with programs like Dr Williamson's at NNMC we will see an increase in physicians pursuing neurological psychiatry and psychopharmacology as a specialty.

 The care being provided at NNMC on the TBI/mental health unit is what all of our brain injured veterans & servicemembers need & deserve. In my opinion, the 7East “model” of individual patient-centered care, should be duplicated and saturated through out the VA and DoD healthcare systems.

– October 05, 2010 12:04 PM
A.
Tracie Lattimore :

The DoD has a number of systems in place to help bring on additional providers and also support the education of civilian providers within the community.  The Defense and Veterans Brain Injury Center (DVBIC) works with the Center for Deployment Psychology (CDP) to help train civilian providers.  The CDP offers courses and resources appropriate for military and civilian providers caring for patients with TBI and/or PTSD.  Please see their website for more information  on programs that are currently available.  http://www.deploymentpsych.org/training/civilian-practice

If you are in need of more specific information, please contact us at info@dvbic.org

– October 05, 2010 12:49 PM
Q.

Taking Care of TBI Vets

Letting you know first of all how grateful we all are to your son and all the vets who have sacrificed so much for our freedom.That said, do these vets, or TBI patients in general, need someone to take care of them and help them with daily tasks of life? What will happen if caregiver passes away or is unable to continue care for patient? Will military pay for their care from now until death?

A.
Cheryl Lynch :

Thank you very much for your kind words. In general, most of our veterans who suffer a moderate to severe brain injury will in fact need the assistance of another for many years, if not for a lifetime. There are many variables as to how much assistance is required; some need assistance with every function for their daily activities and for others assistance is required for cognitive difficulties or safety in the community.

Your questions are the ones family caregivers ask everyday. I think we all hope that eventually we can help increase our loved ones level of independence, or at least know that we have put the right supports in place that their recovery will continue if something happens to us. Medically retired veterans are entitled to healthcare insurance and VA benefits for life.  

– October 05, 2010 12:10 PM
A.
Tracie Lattimore :

During the acute stage of injury, the service member (SM)  will receive their care at Military treatment facilities and the VA polytrauma centers.  Once they have recuperated and are outpatients, the SM's care will be taken care of at MTF's, Military clinics, civilian clinics and/or veterans hospitals and clinics.  Each SM's care will be determined by their individual needs.  If they need assistance with activities of daily living they will receive that care at the appropriate facility. 

If a SM is severely injured and needs full time care, an individual care plan is developed with a team of medical and social service professionals.  A Federal Recovery Coordinator will be assigned to that SM and follow that service member for life. Each individual care plan will be reviewed regularly and if the loss of a family caregiver occurs, the FRC will coordinate the change in care with the medical and social service team.

If a service member is severely Injured and unable to remain on active duty due to injuries, they will be medically retired and receive a disability rating with the Veterans Benefit Administration.  Their continued health care will then be covered by the Veterans Benefit Administration.

– October 05, 2010 12:52 PM
Q.

Veterans with Dystonia

We at the American Dystonia Society are trying to reach out with support to vets who have dystonia as a direct or indirect result of combat-related TBI. We have at least 7 documented cases. Can our organizations work together to serve this segment of Americans who have made a great sacrifice? You can contact us via our Web site at www.dystonia.us.

A.
Cheryl Lynch :

I would be happy to post information about your organization on the AVBI.org web site.

– October 05, 2010 12:12 PM
Q.

CranioSacral therapy for Traumatic Brain injured patients?

Is there any research going on, or is anyone who is getting CranioSacral therapy for traumatic brain injury reporting positive clinical results? I have seen a number of concussion and post car accident head trauma clients improving significantly with fewer drugs and thus fewer side effects. Any others out there working with the soft touch modality?

A.
Tracie Lattimore :

I am unaware of any data on this.  If you would please send your question to us at info@dvbic.org, we will look into this for you.  Thanks,

– October 05, 2010 12:15 PM
Q.

DoD/VA Traumatic Brain Injury Care Options

My spouse served in Afghanistan and Iraq. He suffered a severe brain injury in an IED attack and is medically retired from the Army. He's had behavioral and emotional issues since the injury. At best, it's draining. At worst, I fear for both our safety. DoD and VA providers have tried to help. I do not feel the resources available to him within the VA system are appropriate ones for his situation though. Because he is a veteran I thought we had no choice of doctor or hospital. TRICARE is unable to pay for most of what he needs. I would like another opinion and to know other treatment options. None of his case or care managers have told us about the program at NNMC. How did you learn about Dr. Williamson? How did your son get the option to seek care at a hospital other than your VA Medical Center? Did his team suggest he go there or did you ask to go? Do I need to make a request to go there for another opinion?

A.
Cheryl Lynch :

It was actually because of a chance meeting, by a friend, that I learned about Dr Williamson and the program provided at National Naval Medical Center. I was fortunate in the sense that I had Dr Williamson's information  and was able to contact him directly, but our FRC helped coordinate our transportation and the discharge plan.

I would suggest you seek a referral to Dr Williamson and the TBI/Mental health program at NNMC. You can request a referral through your spouse’s primary care physician, case manager or FRC.

– October 05, 2010 12:16 PM
A.
Tracie Lattimore :

Please contact Teresa Burke, tburke@dvbic.org.  She is the DVBIC care coordinator at our HQ office in Washington, DC.  She will be able to help enter your spouse into our program and assist in coordination of care within the DoD/VA systems. 

– October 05, 2010 1:07 PM
Q.

Resources

Cheryl, If I am a family member of a veteran with a TBI, specifically a newly diagnosed one, where is the best place to find out information. What services is the VA ready to provide?

A.
Cheryl Lynch :

There are many programs available to your veteran, but it’s important that you take advantage of one of the case management services to help you navigate the system. Case management can be provided by either the FRC program or the DVBIC. It would also be beneficial to you and your loved one to connect with some of the veterans organizations,  AVBI being one of them. This may help get you heading in the right direction.

– October 05, 2010 12:25 PM
A.
Tracie Lattimore :

For basic information on TBI, I would recommend a number of websites:

www.traumaticbraininjury.org - (look for info within the family caregiver curriculum- specifically the first section on understanding TBI)

www.brainline.org - It is a great interactive website.

www.dvbic.org

Please also contact our care coordination program to ensure that you are taking advantage of all the resources available to you.  Teresa Burke, tburke@dvbic.org, would be the best contact point for our care coordination program.

Other non-urgent questions can be sent to info@dvbic.org

– October 05, 2010 1:10 PM
Q.

Richmond, Va.

Thank your son (sorry for that assumption, the article says 'veteran' so it could be your daughter) for his service. I will always keep the health and benefits of our veterans who protect my freedom in mind at the voting booth! My husband goes to the VA and I think it's very well run considering the size and problems of the population they serve. Thank you for your work.

A.
Cheryl Lynch :

Thank you for your support.

– October 05, 2010 12:25 PM
Q.

Treatment Options

Have you heard anything about the use of either progesterone or deep brain electrical stimulation to treat those who've suffered blunt force trauma or bleeding on the brain leading to deficits in cognition, language and emotion/energy?

A.
Tracie Lattimore :


David Wright from Emory University has a funded multi-center trial for
progesterone in severe TBI to be given within four hours of injury.
Brooke Army Medical Center in San Antonio will be a site in that trial
that the Defense and Veterans Brain Injury Center (DVBIC). This study is
specifically for moderate and severe TBI. That trial is ongoing with no
published results at this time. In regards to the question on deep brain
electrical stimulation, I dont have any immediate answer for you. If you
will send us an email at info@dvbic.org, we will be happy to try and
find out more information for you.

– October 05, 2010 12:30 PM
Q.

Life Skills coaches - Cheryl

In the article and video, it was mentioned that John Barnes has been able to utilize a life skills coach as a "prosthetic device" to assist him in many different facets of life. Is a life skills coach something your son has utilized? In your work with AVBI, do you hear from veterans and families that this type of program is a tool that could lead to better long-term outcomes?

A.
Cheryl Lynch :

I think it needs to be understood, that no one should use TBI as an excuse, but merely the cause of behavior that needs to be relearned. In the case of my son, John Barnes, and many others who have suffered a brain injury, relearning socially appropriate behaviors may take months or years and it can’t always be learned in a clinical setting. Utilizing a life skills coach or someone that can teach these behaviors in the community are very helpful and does seem to improve long term outcomes. To date my son has not utilized a LSC. John Barnes is one of the few that I know of that has had the opportunity to receive this type of assistance.

– October 05, 2010 12:32 PM
Q.

How long?

Cheryl, my fiance was diagnosed with TBI nearly seven years ago, and I'm comfortable with where he is right now, but I'm afraid that his condition will deteriorate. In your experience, do things stabilize eventually, or do we need to be prepared for other changes?

A.
Cheryl Lynch :

My son did very well for many years, however it seemed the more he recovered in some areas, mostly physically, the more difficulty he had with behavior and emotional issues.  I think the important thing is to be aware that their can be changes as time goes on and be prepared in advance to seek attention, if things go array.

– October 05, 2010 12:36 PM
Q.

TBI in previous wars

You don't hear much about TBI in discussions about World War Ior II. Is it because the syndrome was not understood back then, and vets were on their own to suffer through it, or is there something different about the nature of the combat in the current war that makes it more likely for soldiers to be afflicted by it? Have there been any studies to look at whether troops in WW I or II suffered TBIs more frequently, less frequently, or at about the same rates as modern troops?

A.
Cheryl Lynch :

AVBI recieves many applications for our medical alert tags & ID cards from veterans of all previous wars, it seems all the public awareness has increased the opportunity for many of these older veterans to finally get the help they need.

– October 05, 2010 12:42 PM
Q.

Long-term support

Thank you for the work that you do. As a TBI patient myself (civilian), I know how frustrating it can be to still struggle daily even though I appear and even test normal. I struggle in ways that are difficult to test, e.g., mental endurance needed for a full-time job, mild but exhausting dyslexia, inability to focus, low-grade depression not helped by drugs, etc. Have you found the VA to accept and support the not-so obvious difficulties veterans face long term after TBI? I've found it very difficult to find resources to learn how to cope, despite sympathetic neurologists during the acute phase of my TBI.

A.
Tracie Lattimore :

These TBI cases vary greatly.  I would suggest that you start by reviewing some of the latest information out there on www.brainline.org, www.traumaticbraininjuryatoz.org, or our website www.dvbic.org.  You may also want to look into your state brain injury association. 

– October 05, 2010 12:43 PM
Q.

Information

What kind of information do you find new members of your network are most in need of?
A.
Cheryl Lynch :

Veterans who have suffered a brain injury and their caregivers are often left with a feeling of isolation; through our forum and chat room we hope to reduce that isolation by gaining a sense of friendship with others who understand. It’s not scientific by any means, it’s just individuals reaching out to one another and venting their frustrations or sharing their positive experiences.

– October 05, 2010 12:45 PM
Q.

DVBIC - assist with referrals?

Tracy, Does the DVBIC maintain a database or list of treatment facilities around the country that can be possible options for service members or veterans living with a mixture of complex diagnosis (ie: TBI, PTSD, other physical injuries, substance abuse, behavior issues, etc)? I have been to the website and see the two facilities that are located on the East coast, but those two options may not be practical due to distance or the right fit for a certain veteran. Is DVBIC aware of other programs around the country that are similar to Dr. Williamson's and if so, is there a way for these veterans to receive assistance in getting a referral?
A.
Tracie Lattimore :

Yes, the best way is to contact our care coordination program.  Teresa Burke, tburke@dvbic.org, is your best point of entry into our system.  Questions that are not urgent can also be directed to info@dvbic.org.  Our system of care coordination is regionally based for the purpose of having experts that know the best resources within a specific region.  Once you are brought into the care coordination program your case will be transferred to the RCC within your specific region.  If you move to a new region we simply transfer the case to our appropriate staff member. 

– October 05, 2010 12:56 PM
Q.

Greatest lesson and greatest hope

Cheryl, As a caregiver and advocate, what has been your greatest lesson learned over the past 10 years? Also, in regards to veterans living with brain injury, what is your greatest hope for the future?
A.
Cheryl Lynch :

I think the best lesson I’ve learned is to remove three words from my vocabulary. The 3 words “you need to” makes everything else unheard. It’s something I share with most the caregivers I meet.  Most brain injury survivors, especially proud military veterans, don’t want to be told constantly “you need to”.

 

My hope is that my son will continue to thrive and reclaim a quality of life that will supercede what the injury did to him. I also wish this for all the veterans I have met over the years.

– October 05, 2010 12:58 PM
Q.

Tracie Lattimore :

I would like to put up a couple of key resources that are available regarding TBI. 

For patient referral please contact Teresa Burke, tburke@dvbic.org. For other questions you may contact us at info@dvbic.org

Our website is www.dvbic.org

www.traumaticbraininjuryatoz.org is a great site that has current information on TBI.  Check out the family caregiver curriculum on that website.  It is a new resource that is free to download and covers introduction to TBI, understanding effects of TBI and what you can do to help, becoming a family caregiver for a service member/veteran with TBI, and navigating resources. 

www.brainline.org is also a wonderful resource that is regularly updated with lots of interactive and multimedia material

 

 

Q.

Chesterfield

To me the worst part is when soldiers have trouble getting their disability status. I hate that they have to fight to get a modest check for losing their earning ability in service to their country.
A.
Cheryl Lynch :

I agree that sometimes the disability rating process is way to long and cumbersome. At least now the new schedule of ratings for the residuals of TBI are more reliable than the older system.  

– October 05, 2010 1:02 PM
Q.

Previous concussions

As the parent of a young man who suffered several sports-related concussions while in high school, but seems to be doing all right now and who wants to serve in the military -- what advice do I give and how will the military approach his application?

A.
Tracie Lattimore :

I would like to ensure that we give you a helpful and accurate answer to this question.  Please contact us at info@dvbic.org so that I can confirm DoDs current policy regarding this matter prior to responding.

– October 05, 2010 1:03 PM
Q.

pre-existing conditions

What is - or should be - the military approach to recruits who have already suffered one or more concussions through sports injuries?
A.
Cheryl Lynch :

I won’t provide an official answer but surely if someone is considering entering the Military and they have a history of concussions they should make sure that it is discussed openly and well documented.

– October 05, 2010 1:05 PM
Q.

TBI

Cheryl, recently I have read about veteran's with TBI not receiving the purple hearts they are entitled to. How do you feel about this, and what can we do as a community to help these veterans?

A.
Cheryl Lynch :

I do know that there have been recent articles about this very subject and the regulations are quite clear as to who should be awarded a Purple Heart. I surely hope those who meet the criteria get what they have earned. As an organization we direct veterans who require help to organizations that are assisting veterans with the appropriate paperwork.

– October 05, 2010 1:13 PM
Q.

Cheryl Lynch :

If you or someone you know suffered a brain injury while in service to country, please visit the American Veterans with Brain Injuries web site at http://avbi.org. On line applications for the AVBI medical alert tag & ID card are available through our web site and we would love to have you join us in the live chat or on the forum.

Again, thank you for your participation in today’s Washington Post web chat.

Cheryl Lynch

Q.

Tracie Lattimore :

Thanks for all the great questions regarding TBI and care of our Service members and Veterans.  If we did not answer your question fully, or if you have additional questions, please contact us at info@dvbic.org.  I am also available to assist in any way I can.  My email address is tlattimore@dvbic.org.  I would also like to say thank you to all the Service members and their families for the sacrifices they have made for our country. 

Q.

 

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