Monthly Archives: March 2011

So You’ve Become a Caregiver? Read On

Nothing Is What I Thought It Would Be: A Reservist Wife’s Perspective

Articles from Military One Sourcer http://www.militaryonesource.com/ on dealing with becoming a caregiver.

When You Become Your Spouse’s Caregiver

Becoming a Caregiver for Your Adult Son or Daughter


TBI and Vision Loss

One hurdle that keeps tripping us is Sean’s limited vision. Many of the doctors, optometrists, and ophthalmologists Sean has seen do not know enough about the relationship between TBI and vision loss. Add to that the overlap between TBI and PTSD and Sean’s case is even more puzzling, especially when seeing a new provider.

Dr. S, neuro ophthalmologist, explained Sean’s vision difficulties like an electrical circuit. If an electrical circuit has a frayed wire, sometimes the wires will connect and the switch will work, and sometimes it will not. The same is true with the electrical pathways in the brain. Microscopic damage in the brain can cause the visual pathways to be disrupted.

One ER doctor at the VA told us that Sean’s vision loss was not likely due to his TBI because the loss would have been sudden, not delayed by two years as, “it just doesn’t work that way.” However, this is not what we have learned through our interaction with veterans and professionals through the BVA. We have met with Colonel Donald A. Gagliano, M.D., Executive Director of the Vision Center of Excellence and heard him speak about the problems associated with TBI-related vision loss.

Dr. Gagliano said more research is needed to determine the cause and proper treatment of TBI. Also, he said that integrated treatment between the DOD and the VA at the Vision Center of Excellence could help TBI patients receive the most effective care.

TBI is a serious condition that often results from improvised explosive device injuries. The visual impact of TBI is sometimes not observed until weeks, months or even years after the blast. TBI can have a major impact on visual quality of life, according to Glenn C. Cockerham, MD.

“Blast injury is the most common cause of TBI in the war in Iraq and is increasingly common in Afghanistan,” he said. “Little has been reported in the scientific literature about blast effects on the human eye and vision.”

The following articles highlight difficulties in diagnosing and treating vision loss due to TBI.

New DoD/VA Center Tracks Increasing Eye Injuries To Improve Vision Research, Care

About 60-70 percent of severe and moderate TBI cases and 40 percent of mild TBI cases include some form of visual impairment, such as nerve damage from concussive events. VCE is looking at capturing reports from the Defense and Veterans Brain Injury Center, which collects intake information on visual issues caused by mild TBI. “Mild TBI is still an enigma,” COL Gagliano advised. “We’re looking at clinical symptoms and maybe some cognitive testing. Some of the blast exposure injuries are injuries to the globe. When a blast wave hits your eye, it causes tissue, retinal, nerve, and zonular injury and we don’t understand it well. It’s like two times the force of being punched. The eye is compressible, so we’re looking at how to mitigate it.”

Vision and Traumatic Brain Injury (TBI) from the Vision Center of Excellence


Benefits on Hold for Vets’ Caregivers Even With New Law

Benefits on Hold for Vets’ Caregivers Even With New Law

Article from the Houston Chronicle


BIAA Adopts New TBI Definition

March is Brain Injury Awareness Month!

BIAA Adopts New TBI Definition

06-Feb-2011

The Brain Injury Association of America (BIAA) is pleased to announce its adoption of a new definition of traumatic brain injury (TBI). Based on the proposal of the Demographics and Clinical Assessment Working Group of the International and Interagency Initiative toward Common Data Elements for Research on Traumatic Brain Injury and Psychological Health, BIAA has adopted the following definition:

TBI is defined as an alteration in brain function, or other evidence of brain pathology, caused by an external force.

The International and Interagency Initiative toward Common Data Elements for Research on Traumatic Brain Injury and Psychological Health is led by a variety of co-sponsoring federal agencies that facilitate scientific experts to participate in working groups developing recommendations for specific common data elements. The Clinical Assessment Working Group is comprised of both military and civilian TBI researchers from across the country, including Dr. Wayne Gordon of Mount Sinai School of Medicine, who also serves on BIAA’s board of directors.
A position statement released from the working group reported that “A clear concise definition of Traumatic Brain Injury (TBI) is fundamental for reporting, comparison, and interpretation of studies on TBI. Changing epidemiology patterns, an increasing recognition of significance of mild TBI, and a better understanding of the subtler neurocognitive neuroaffective deficits that may result from these injuries, make this need even more critical.”

According to Dr. Gordon, “The new definition incorporates the emerging evidence that signs and symptoms of the injured brain may emerge over time.”

BIAA believes this updated definition will better capture the essence of the disease process and the many varying outcomes present in persons with TBI and will reflect more recent research conducted by experts across the country.


Madigan Army Medical Center

Sean was sent to Madigan Army Medical Center at Ft.Lewis, WA the first week of March for an eye evaluation by a neuro ophthalmologist for his PEB.  A lot of travel for a “nothing new” answer.  Oh, how I wish just once there could be an exam where the doctor says, “Oh!  There!  That’s it!”  Definitive answers that would end this search. 

The one thing we were able to take away from this exam is that unlike others who have told Sean since there is nothing physically wrong with his eyes he will “magically” regain sight someday, Dr. G told him that since his vison loss has persisted for more than two years he is not likely to regain that sight.  She also said that etiology doesn’t matter, he has still lost vision.  This gave Sean validation unlike others who have made him feel like he was making things up or it’s all in his head.

With our flight schedule we had less than a day to spend in Seattle, but we still managed to squeeze in some sightseeing with our good friend David Floyd.  He gave us the Pacific Highway tour on the drive from Ft. Lewis to Seattle.  We walked around city center and through Experience Music Project (EMP) before traveling 500 feet up to dine at Sky City in the Space Needle.  It was AWESOME!!  The view was amazing!  360 degrees of city lights and Puget Sound.  The food was incredible!  Best filet I’ve ever eaten, followed by the Lunar Orbiter Ice Cream Sunday.  The company was perfect!  Thanks, Floyd, for showing us your home and spending the day with us.

Roots and Branches at EMP
Sean in front of Roots and Branches
Space Needle
Our good friend and tour guide, David Floyd
View from the top

Thankfulness

I feel that after that last post I need to express thankfulness for our many blessings.  Sean came home from Iraq alive, and all things considered, in relatively good condition.  We have three wonderful children (if you overlook the teenage stuff ha ha!).  We have a home, a car, food to eat, money to pay the bills.  Sean has doctors who care about him and work hard to find ways to help him.  Sean is moving forward with his cycling goals.  I can afford to stay home and care for him.  We are surrounded by family who cares for us. 

I have a tendency to get very dark, but I do see the bright side.  It is hard for me to look beyond sometimes when there seems to be one thing after another assaulting us.

We are extremely fortunate to be here, to be together, to have each other as we learn to live this new life.


Where is That Damn Tunnel?

“Comments:  This family has been under much stress related to PTSD, job, etc.  However, they feel that they are just now getting appropriate services in place and are beginning to see a light at the end of the tunnel.”
–Notes signed by social worker in June 2008

August 7, 2011 will be six years from the day Sean left in support of Operation Iraqi Freedom.

March 25, 2011 will mark the five year anniversary of Sean’s injury.

On May 10th  it will be four years since Sean returned home.

No wonder we’re exhausted and feel like there is no end in sight. . . .

January brought numerous appointments, trips, and frustrations.  Sean had 12 appointments this month, all but two were out of town.  We don’t have anything to complain about when it comes to the quality of care provided by the VA doctors Sean is currently seeing. Our case worker is outstanding. Staff is friendly and helpful. However, in the VA system only certain healthcare needs can be met by our local CBOC (Community Based Outpatient Clinic). For other needs, we are referred to the VAMC (VA Medical Center) in Sioux Falls. 

The travel time is overwhelming (we have put 20,000 miles on since July!!), especially given winter driving conditions and that Sean can’t drive.  Over the years it has taken much time away from our children at home and created extra problems there as well.  It has made it impossible for me to work. 

Another issue we find is that many doctors do not work for the VA full time, so it makes coordinating appointments difficult.  We may have an appointment on Monday with one provider, but cannot see another until Tuesday or Friday as he is only at the VA two days a week.  Or, after rearranging an appointment to coincide with another trip, a nurse will call with a schedule change from the other doctor and we are back at square one.  It’s also frustrating that we drive six hours round trip for a 20 minute appointment as in the case of Sean’s recheck following sinus surgery. 

It seems our best case scenario would be outsourcing the routine things like sinus surgery and colonoscopy to local providers.  For the VA, however, it is more cost-effective to have appointments in-house.  We could go on our own to private providers and submit through insurance, but we have found that using civilian providers without access to Sean’s full medical history creates a monster of its own.

We have been traveling weekly for his PTSD therapy since June.  Sean works well with Dr. CV and I’m able to sit in on their sessions, so we will continue to travel as the benefits outweight the inconvenience.  For February and March they are trying V-Tel (via television screens) so we will meet with her from Aberdeen instead of in Sioux Falls.  It is extremely convenient, however, it lacks the more personal face-to-face feeling.  She will be taking some time off in April and we will reevaluate at that time.  We will continue to travel to see her if necessary because their working relationship is so important to his healing.

Sean has an OEF/OIF peer support group that meets monthly in Sioux Falls.  He enjoys this group as it is a place where he feels he can contribute with advice for newly injured vets.

There is finally a psychiatrist traveling to Aberdeen who will see Sean on a monthly basis.  Nine months have passed since the VA ended their contract with Dr. K and this is the first psychiatrist Sean has seen since.  Scary considering the number of medications he takes that can only be prescribed by his psychiatrist.  Sean and Dr. R seemed to bond right away, so while the VA is still looking for a permanent psychiatrist at the CBOC, Sean wants to continue to see Dr. R even if it means traveling to Sioux Falls or using V-Tel.  I am willing to travel for these appointments as I believe finding someone Sean connects with is a key factor in his success.

In the last month we have visited the emergency room three times for stabbing eye pain and once because he fell and hit his head on the floor.

Sean received a CPAP (Continuous Positive Airway Pressure) machine for his sleep apnea following his sleep studies.  The first two or three nights I don’t think either of us got any sleep as he was constantly adjusting and readjusting the machine and facial mask.  I think the snoring would have been more restful (for me anyway).  When he uses it and can leave it alone, he does sleep without snoring and appears more rested.

Lately, Sean has had difficulty filling his weekly medication containers.  He used to have a system for filling and keeping pills straight.  I have strongly encouraged this as it’s critically important for him to know what medications he takes and when in the event that I am not here to help.  Recently I have noticed he frequently misses his afternoon medications, even though he tells me he took them.  He is also struggling to take his medications at a regular time.  I have started filling his pill containers again and have gone back to reminding him three times a day to take his pills. 

I have used Cozi to set up daily and weekly schedules and reminders.  We print Sean a weekly schedule and I also have reminders sent to his phone via text message.  This would be a wonderful system if he remembered to check his schedule, carry his phone, or read his text messages.  I am now thinking I will need to incorporate a morning meeting where we cover the day’s plans and hopefully work to a point where he can get through the day with minimal reminders.  He wants to be independent.  He wants to get more out of his day, especially with his cycling schedule now in place. 

I recently ordered some books about veterans with TBI and PTSD to hopefully broaden my understanding and feel less alone.  One thing that eats at me is while his behavior and symptoms might be normal, it’s not normal compared  to how he used to be.  As one dear friend in a similar situation said to me, “He is not the man I married.”  OH WOW!!  I have thought that so many many times, and feel tremendous guilt that I can think that way about my husband, but it is so true.  The man I married wasn’t angry or selfish or needy.  He didn’t blow up over minor things or say things to hurt.  He did not put himself above the rest of us.  The toll these years has taken on our family and our marriage is immense.  I know we won’t ever “go back” to the way it was, but I wonder if we will “go forward?”

Somedays, it feels like we are stuck in a relentless game of Whack-A-Mole because something is always popping up–appointments, kids, on and on and on. . . .

Is anyone out out there to shine a light at the end of this tunnel?  It’s pretty dark in  here.