Traumatic brain injury: Coming home a different person

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Cheryl Lynch,Tracie Lattimore
Tuesday, October 5, 2010; 12:00 PM

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Cheryl Lynch: 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.

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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.

Cheryl Lynch: 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. of individual patient-centered care, should be duplicated and saturated through out the VA and DoD healthcare systems.

Tracie Lattimore: http://www.deploymentpsych.org/training/civilian-practiceIf you are in need of more specific information, please contact us at info@dvbic.org

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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?

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.

Tracie Lattimore: Their continued health care will then be covered by the Veterans Benefit Administration.

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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.

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

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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?

Tracie Lattimore: Thanks,

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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?

Cheryl Lynch: and was able to contact him directly, but our FRC helped coordinate our transportation and the discharge plan.s primary care physician, case manager or FRC.

Tracie Lattimore:

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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?

Cheryl Lynch: AVBI being one of them. This may help get you heading in the right direction.

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 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

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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.

Cheryl Lynch: Thank you for your support.

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Rocci Fisch: American Veterans with Brain Injuries

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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?

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.

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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?

Cheryl Lynch: 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.

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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?

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.

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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?

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.

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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.

Tracie Lattimore:

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Information: What kind of information do you find new members of your network are most in need of?

Cheryl Lynch: s just individuals reaching out to one another and venting their frustrations or sharing their positive experiences.

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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?

Tracie Lattimore:

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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?

Cheryl Lynch: .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.

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Tracie Lattimore: For patient referral please contact Teresa Burke, tburke@dvbic.org. For other questions you may contact us at info@dvbic.orgOur website is www.dvbic.orgwww.brainline.org is also a wonderful resource that is regularly updated with lots of interactive and multimedia material

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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.

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.

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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?

Tracie Lattimore: Please contact us at info@dvbic.org so that I can confirm DoDs current policy regarding this matter prior to responding.

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pre-existing conditions: What is - or should be - the military approach to recruits who have already suffered one or more concussions through sports injuries?

Cheryl Lynch: 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.

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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?

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.

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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.s Washington Post web chat.Cheryl Lynch

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Tracie Lattimore:


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