Category Archives: TBI

Western Blind Rehabilitation Center

Sean was accepted into the Comprehensive Neurological Vision Rehabilitation (CNVR) program at the Western Blind RehabCenter (WBRC) in Menlo Park, CA.  On February 21st we flew to California to get him admitted into the program.  Through the VA’s Caregiver Program, I was able to spend the first week and a half at the blind center with Sean to help him adjust and to observe the program. 
The staff and program at WBRC were impressive! We both felt at ease and Sean settled into his routine.  His day included:  Manual Skills where he learned woodworking, ceramics, leatherwork, and gardening; Orientation and Mobility which offered a refresher on his mobility and cane skills along with training on the TrekkerBreeze; Living Skills focused on cooking, cleaning, and using devices such as the Milestone to better organize his day; Visual Skills emphasized using the Victor Reader Stream for his audio books as well as using proper lighting and scanning techniques; CNVR training instructed him in use of the iPad and his computer, and introduced him to Interactive Metronome (IM).  IM uses rhythm to help reset the brain’s timing and to improve a variety of functions including memory, concentration, and focus.  Sean will be continuing IM therapy at home.
Before I returned home we took the Caltrain into San Francisco for the day.  We went to Pier 39 and took a boat tour of the bay around Alcatraz and under the Golden Gate Bridge.
I returned for the family training portion of the program on May 9th.  We met with the neurologist and with Dr. Cockerham and discussed the results of the MRI.  The high-resolution MRI did detect areas of brain damage on the right side in the frontal lobe, temporal lobe, and deep white matter.  While there is not visible damage in the occipital lobe (visual center of the brain) vision travels throughout the brain and all parts of the brain play a role in what the brain sees.  Sean’s damage is on the right side, and his weak eye is his left since vision crosses the brain while it travels to the back of the brain.  Testing indicates that Sean receives very little visual information through his left eye.  When presented with a light bar approximately four feet long with flashing lights, Sean’s eyes responded automatically to lights on the right side, but did not respond or “jump” to any stimuli from the center of his body to the left.  While there is no clear “x marks the spot” answer, I respect that there are things medical science cannot explain and that the doctors were up front and honest.  The instructors who worked with Sean every day did not find any indication of conversion disorder.  At this time continued vision rehab, such as the CNVR program, is recommended for possible improvement over time.  Sean will likely return to the WBRC in 8-12 months.

Overall, we were thrilled with the program and found the staff, training, and accommodations to be top notch!  HUGE thanks to John and Dan of the CNVR program, as well as to Nikki, Anita, Paula, Matt, Tony, Nicole, and all the nursing staff (and anyone I forgot)!


Western Blind Rehab Center, Menlo Park, CA
Playing Black Jack
Pier 39
Sea Lions at Pier 39
Golden Gate Bridge
Sean made dinner in Living Skills
Watering his garden
Working in the shop with Tony
Graduation with Program Manager John Kingston
Technology Class with Dan



Time Off?

I am more than a little insulted by the comment I’ve heard more than once in the past two months, “Are you enjoying your time off?”  Seriously?  Is that what you think I am doing?

I’m a full-time caregiver.  I resigned my position at school because my husband needed my support at home.   We were fortunate that he could come to work with me and offer his services as a volunteer so that I could keep an eye on him and not leave him home alone.  It was a quick fix, and while he still volunteers when he is able, taking him to work with me was not a long term solution.

Yes, I’m at home.  But guess what?  I am working.  Not only am I providing 24 hour support for my husband, I am the Volunteer Coordinator for Family Of a Vet, an AMAZING non-profit organization that is working tirelessly for veterans and familes.  FOV currently has almost 250 Grassroots Volunteers.  Through our website, facebook page, and social media we reach tens of thousands of people each month!  I am on call around the clock to provide support and resources for our members. The past two months have been filled with late FOV nights, and busy days.  Here is a run-down of what I do:

  • advocate for veterans and families
  • locate and provide resources
  • research
  • moderate group rooms online
  • offer ongoing support to our members online and through email and phone calls
  • manage the “virtual” volunteer database
  • coordinate and host the weekly Caregiver’s Edition of our Life After Combat Blog Talk Radio Show
  • coordinate with staff on projects including our blogs, fundraising, website, networking
  • use social media to raise awareness of veterans issues

I may not be working in the conventional sense, but I’m making a difference in the lives of veterans and families.  I am providing the support I wish I’d had six years ago when we started this crazy roller coaster life of uncertainty.

You may think I’m just goofing off, but actually facebook is my office. Family Of a Vet is a non-profit run by veterans and family members who *GET IT* and are trying to reach out to others who are struggling like us to help and offer support and education.

Shared by Family Of a Vet, Inc., a national non-profit 501(c)3 organization dedicated to helping veterans and their families learn how to cope with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat through real-world, plain language education and resources for heroes, families, and communities.
 
If you know a veteran or loved one that we can help, please encourage them to visit us:
 
On the web – www.familyofavet.com 
On Blog Talk Radio – www.blogtalkradio.com/familyofavet

Update time!

While reading my notes I realized it has been a loooooooong time since I gave any real updates, so here goes!

Sean’s application to the National Intrepid Center of Excellence (NICoE) that we worked so hard to submit this spring was rejected in July because he is not an active duty soldier and does not intend to return to active duty status.  Sean was understandably disappointed, but by the time we found out he was not accepted I already had a new seed planted in my brain.

We applied with the Palo Alto VA in California for their Comprehensive Neurological Vision Rehabilitation program for TBI/vision rehab.  In September Sean had the last of the preliminary exams done and his referral was complete.  The facility is undergoing a move, so his intake will likely take place in January.  This program will provide Sean with a thorough two-week evaluation for all health issues, including vision, and up to eight weeks inpatient TBI rehab.

We are incredibly anxious to get this placement under way.  Seven + months have passed since we began the application process with the NICoE.  I realize it is a slow process, but this is getting ridiculous.

As part of his evaluation we are hoping to get an accurate diagnosis to *finally* determine if his vision loss is due to his TBI.  As I’ve mentioned before, it has been mentioned in his record that his vision loss might be due to conversion disorder.  His primary care doctor and polytrauma doctors do not agree.  The civilian neuro-opthalmologist we saw last spring does not agree.  The VA psychiatrist who completed his neuro psychological evaluation in 2010 does not agree.  However, it seems every doctor who has evaluated Sean for the purposes of his Army MEB/PEB has jumped on the conversion disorder diagnosis.  Several of them believe so strongly after reading his records that they don’t take time to do any evaluations or examinations in the office until AFTER they have defined conversion disorder and tried to get us to say we agree. It is still my belief that they are trying to save themselves money by not addressing the vision loss as physical.

Now, if it turns out that he really is suffering from a conversion disorder, then so be it.  We will continue to attend his therapy sessions and address it.  There is no real treatment or cure.  It might get better with therapy and time, it might not. 

The DSM-IV-TR states that conversion symptoms will disappear in most cases within two weeks in those hospitalized.  Follow this link to read more about conversion disorder.  According to Med Line Plus, conversion disorder symptoms usually last for days to weeks and may go away suddenly.  In December, it will have been 3 years since Sean lost his vision.

So. . . we have some fears about how this will affect us.

Since conversion disorder is not a permanent disability, Sean would not be able to get his permanent and total rating from the VA.  He would not qualify for the adaptive housing grant, vehicle grant, or DEA money for the kids for college.  We don’t know if it would affect his affiliation with the BVA, but hopefully not unless his vision comes back.  He would not qualify to participate in activities with USABA.  It could affect my status as a caregiver since the primary reason he needs care is for blindness.  It will affect his MEB.  He will not qualify for a guide dog.  

All of these issues are workable and I try not to think about them much. 

Sean already has a list of “failures” he works from.  He can’t get his purple heart and has to prove he was injured (again).  He has worked for four years to get his MEB/PEB completed–he can’t serve, but he can’t get out, and the doctors don’t belive him.  He was denied TSGLI because he did not lose his vision within two years of his injury (TSGLI is irrelevant if he has conversion disorder).  Without his permanent and total rating from the VA he cannot use the housing grant to make improvements to the house and he does not qualify for a grant to replace his vehicle.  He had to fight over and over to get his tandem bike approved from the VA.  He has had issues using his GI Bill for his children.  He  had to give up his job.  I gave up mine. 

All of these issues come together in Sean’s head to say, “Your injury is not important to us.”  He says, “I was promised these benefits in return for my service, but it’s their job to review and deny me unless I can prove I deserve it, so what’s the point?”

Well, not a bright and sunny post, but this is what is on our minds.  This fall has been very busy, so we are working hard to get back on a schedule and have some down time.  The good news is the bike was finally approved and after some prodding, it was paid for and ordered.  It will be ready for him this spring!


Who Says There’s Nothing Good on TV?

Extreme Makeover Home Edition–The Hill FamilyActress Glenn Close and the team help build a home for the Hill family.  Allen Hill is a soldier dealing with post-traumatic stress disorder.  Watch the episode online.

Oprah’s Lifeclass: Puppies Behind Bars (as seen in EMHE)

Our America: Invisible Wounds of War with Lisa Ling
premieres Sunday, November 6th at 9 PM central

Our America: Invisible Wounds of War with Lisa Ling sneak preview

Extreme Makeover: Home Edition “Rise and Honor” A Veterans Day Special
Airs 11-11-11 at 7 PM central

Where Soldiers Come From: It Takes a Village to Fight a War

Heather Courtney’s heartfelt documentary about a group of friends in rural America who sign up to go to war is revelatory in its access, insights, and emotional honesty.

Caregiving and TBI

Caregiving for Someone with a TBI: A Unique Experience
Carolyn Rocchio, a mother and longtime caregiver as well as a nationally recognized advocate, author, and speaker in the field of brain injury, talks with BrainLine about learning to be a caregiver for her son with TBI.

Sarah Wade: A Military Wife and Caregiver’s Story
Military wife, caregiver, and brain injury advocate Sarah Wade talks with BrainLine Military about her husband’s injuries sustained while combat in Iraq.

Excerpts from BrainLine’s webcast Caregiving and TBI: What You Need to Know. You can find other segments from the webcast here.


Family of a Vet

FamilyOfaVet.com – PTSD, TBI, & Life After Combat 

Promotional Video for FOV.

**CAUTION: This video contains graphic combat-related images. While it is intended to give people some small understanding of what a year in combat is like, the images may be difficult for some Veterans, etc., to view. If you would like to skip the combat images, go to 3:39 **

FamilyOfaVet.com (Family Of a Vet, Inc.) is a national non-profit organization dedicated to helping heroes and those who love them learn more about coping with PTSD (post-traumatic stress disorder), TBI (traumatic brain injury) and life after combat.

Family Of a Vet was created by veterans and families FOR veterans and families!

To learn more about FamilyOfaVet.com, visit us at:

Our Main Website –
http://www.familyofavet.com

On Facebook –
http://www.facebook.com/lifeaftercombat

On Twitter –
http://www.twitter.com/familyofavet

At our Blog –
http://blog.familyofavet.com

On BlogTalk Radio –
http://www.blogtalkradio.com/familyofavet


Sleep Disorders Associated with TBI and PTSD

No wonder we’re not getting any sleep!

Sleep disorders plague vets with head trauma or PTSD

Sleep and Traumatic Brain Injury

Sean has sleep apnea and restless leg syndrome.  When he is not medicated, he suffers from insomnia and has night terrors and night sweats.  His symptoms are somewhat reduced by medication.  His body twitches uncontrollably in his sleep.