Monthly Archives: November 2011
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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!
Today, on Veteran’s Day (and ending on Valentine’s Day), Family of a Vet is launching The Love Letter Campaign… a campaign to encourage those who love a hero to write a letter sharing their story (where they started, what they’ve faced together, and why their love endures). It’s not just for spouses, but also for parents, siblings, caregivers, and friends. It’s about telling the “rest” of our stories… stories that continue despite PTSD, TBI, and the challenges of life after combat.
Here’s the main page for the campaign: http://www.familyofavet.com/love_letters.html where you can read more about the project and submit your own letter. Please share your story with Family of a Vet and share this post to help us spread the word
My letter to Sean is here Being Loved By You.
|Colonel Herman, Sean Johnson, Colonel Holzhauser|
|At the airport the morning Sean left for Iraq August 2005|
|Receiving Meritorious Service Medal from Captain Vetter|
|SSG Sean Johnson|
|Welcome Home May 2007|
|My Grandpa Harold was Eisenhower’s flight
mechanic and traveled with him during WWII
I hope I didn’t miss anyone. If I did, please send me a message or leave a note in the comments.
Caregiver stress fact sheet from Womens Health
Caregiver stress is the emotional and physical strain of caregiving. It can take many forms. For instance, you may feel:
- Frustrated and angry taking care of someone with dementia who often wanders away or becomes easily upset
- Guilty because you think that you should be able to provide better care, despite all the other things that you have to do
- Lonely because all the time you spend caregiving has hurt your social life
- Exhausted when you go to bed at night
5 Ways to Bring Yourself Back from Burnout by Martha Beck from O, The Oprah Magazine
I believe my stage is “Hitting the Wall.” I did learn that needing less activity and more sleep is normal in this stage–no more guilt!
Relationships and PTSD from the Department of Veterans Affairs
Post-Traumatic Stress and a Traumatic Brain Injury strain a marriage from Veterans Voices
So sad and so true.
Click here to download a larger version of the poster below. DAV Veterans Day 2011 Poster
|Check out the DAV poster and look for the pictures below.|
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
This is a story from American Veteran written by our friend Liesel Mirelli about our friend Dorian Gardner. We had the pleasure to meet them both at the Blinded Veterans Association Convention in Las Vegas this summer.
Finding Hope in a Darker World Story begins on page 34.
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.