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 21^st 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 9^th.  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:

One the web - www.familyofavet.com 

On facebook - www.facebook.com/lifeaftercombat

On Twitter - www.twitter.com/familyofavet

On our blog - http://blog.familyofavet.com/

On Blog Talk Radio - www.blogtalkradio.com/familyofavet

On YouTube - www.youtube.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.

Silent Siren

Check out Silent Siren and the fantastic new program to help veterans with PTSD in times of crisis.

November 21, 2007 began the Hill Family’s journey of learning to survive both the visible and invisible wounds of war. On this day, during his second tour in Iraq, SSGT Allen Hill’s vehicle was hit by an IED. The severely wounded soldier returned home to begin his physical recovery, but soon discovered that the invisible wounds of war would further complicate recovery; Post Traumatic Stress Disorder (PTSD) became Allen’s most debilitating injury.

Post Traumatic Stress Disorder (PTSD) is a mental illness, and like all mental illnesses, it does not affect only the person suffering; it affects the entire family. Allen and his wife, Gina, are now using their experience to help others who face similar challenges. Their dream to help other families find help and comfort in their local emergency response teams becomes a reality with Silent Siren.

Gina Hill

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. 

Beyond the Battlefield--You MUST Read This

"Beyond the Battlefield" is a 10-part series by David Wood of the Huffington Post exploring the challenges that severely wounded veterans of Iraq and Afghanistan face after they return home, as well as what those struggles mean for those close to them.

If you read *one* post on this blog, make it this post.

An average of 18 suicides a day. . . 18 a day. . .

Think the war doesn't affect you? Look around. Do you know anyone who serves in the military? Anyone whose son, daughter, mother, father, brother or sister serves? Is there a military base or Army Reserve or National Guard Armory in your community? Do they go your church? Do your children sit next to theirs in the classroom? Maybe you shop at the same store or eat in the same restaurant. You could be on the same plane home. Look around.

An average of 18 suicides a day. . . it affects all of us.

Sitting in the doctor's office listening to my husband tell the doctor he is feeling down lately and having suicidal thoughts again brings that number quickly to my head. 18 a day. . . How far is he from being another number in that statistic?

If you've never had to contemplate that and the news is the closest you've been to the war, count your blessings! Hopefully, after reading you will be moved to do a little more to help spread the word and save lives.

One mother says, "I gave him to the Army in the best physical condition of his life, and they gave him back to me in pieces." Oh, how true! My husband doesn't have a mark on him, but he is immesurably broken and struggling to hold it together.

Please, read on.

Part 1
Beyond The Battlefield: From A Decade Of War, An Endless Struggle For The Severely Wounded

Part 2
Beyond The Battlefield: With Better Technology And Training, Medics Saving More Lives

Part 3
Beyond The Battlefield: Lack Of Long-Term Care Can Lead To Tragic Ends For Wounded Veterans

Part 4
Beyond The Battlefield: Military Turning To Wounded Vets' Families As Key Part Of Healing Process

Part 5
Beyond the Battlefield: As Wounded Veterans Struggle To Recover, Caregivers Share The Pain

Part 6
Beyond The Battlefield: New Hope, But A Long And Painful Road, For Veterans Pulled From Death's Grasp

Part 7
Beyond The Battlefield: Back Home, Severely Wounded Veterans Wish More Would Ask, Not Just Stare

Part 8
Beyond The Battlefield: Unprepared For Wave Of Severely Wounded, Bureaucracy Still Catching Up

Part 9
Beyond The Battlefield: As Veterans Fight For Needed Care, Long-Term Funding Remains A Question Mark

Part 10
Beyond The Battlefield: Saved From The Brink Of Death, Veteran Keeps Chasing His Dreams


Rebuilding Soldiers Transformed by War Injuries
NPR interview with David Wood
"When you think about it, one of the things that we as a country are learning is that people who are wounded in war are wounded forever,"

You can access more articles and features here Beyond the Battlefield.

Family of a Vet

I have joined the Grassroots Team of Family of a Vet!  This incredible group was started four years ago by the wife of a wounded veteran who was frustrated by the lack of practical information on  TBI, PTSD, and other issues affecting military and veteran families.  The website now has 100s of pages of information and the team is working to distribute information around the nation. 

Since I am new to the organization, I can by no means do it justice by my description.  Please check out the links below and take some time to explore all the information. 

Earlier this summer I worked on the PTSD and TBI Education packet linked below.  I had the opportunity participate in a mock-up of the new VA Caregiver app being developed for the iPhone and iPad.  I am currently researching topics to write new articles. 

The support and friendship at Family of a Vet is amazing!  I feel I have a whole new circle of friends who really "get it" and understand where we are in our lives because they have been there. 

Family of a Vet Website

About Family of a Vet

Family of a Vet's Blog

Awesome handout explaining TBI and PTSD and background on FOV

Free Packets available from Family of a Vet:

Ready-to-use PTSD and TBI information for FRGs

Ready-to-use packet: Combat PTSD and the Legal System

Ready-to-use PTSD and TBI Education Packet for Parents and Teachers

★★★Help a HERO while you SHOP!★★★
To shop on AMAZON.COM, start with this link, spend the same amount
of money, but help us raise money for FamilyOfaVet.com
(money which helps us reach out and support Veterans and
families who are struggling with life after combat!)
http://tinyurl.com/Shop4FOV