Category Archives: vision loss

Blinded Veterans Share Stories at ARVO Conference

IMG_4606

Blinded Veterans Association Operation Peer Support participants Matt Slaydon, Shianti Lee, Tom Zampieri, Tim Hornik, Sean Johnson, Steve Baskis, Glenn Minney, and Don Gagliano

IMG_4610

Terrell Davis, former Denver Broncos running back, spoke about the impact of traumatic brain injury

In May Sean and I attended the Association for Research in Vision and Ophthalmology (ARVO) national conference in Denver, Colorado. Sean was one of three veterans who represented the Blinded Veterans Association’s (BVA) Operation Peer Support on a panel addressing traumatic brain injury and vision loss.

These veterans shared their personal experiences with brain injuries sustained in Iraq and Afghanistan and how their vision was ultimately imapacted. They were joined on stage by researchers and medical professionals who have extensive experience with brain injury and vision loss.

Former Denver Broncos running back Terrell Davis spoke briefly about his experience with TBI due to his injuries on the football field and the impact on his life. He encouraged participants to continue to research brain injury, especially for military service members.

Throughout the weekend we attended other sessions to learn about ground-breaking research and life-changing technology.

To learn more, folllow these links:

Brain injuries get closer look at Denver conference

http://www.thedenverchannel.com/lifestyle/health/brain-injuries-get-closer-look-at-denver-conference

Vision and Traumatic Brain Injury in Veterans and Athletes

http://www.arvo.org/Annual_Meeting/2015/Program/Vision_and_Traumatic_Brain_Injury_in_Veterans_and_Athletes/


I’m melting!

I’m tired, therefore, this post isn’t up to par.  I’m including it simply to satisfy my compulsive need to tell the complete story in chronological order.

Ohhh! You cursed brat! Look what you've done! I'm melting! Melting! Oh, what a world! What a world!

Ohhh! You cursed brat! Look what you’ve done! I’m melting! Melting! Oh, what a world! What a world!!

After nearly seven years (long, incredibly frustrating years), Sean officially retired from the US Army Reserve on February 11, 2014. Hallelujah!

A process that consumed our lives for many years…a bittersweet ending for a soldier who dedicated his life to serving his country…a relief for his wife who has grown weary of fighting systems that should be designed to help.

So, while the Oz saga from Ft. Riley has played itself out and the Wicked Witch has met her demise (if you’ve been following our blog, this makes sense, I swear), it was not without getting in a final jab. I was required to become Sean’s legal guardian in order for him to “obtain any and all retirement benefits during his lifetime” due to an incompetency ruling.

Recap:

March 2007- ineligible for medical board due to “unexplained physical symptoms” (undiagnosed PTSD and TBI)

July 2007 – PTSD diagnosed

December 2007 –  TBI screening

March 2008 – TBI diagnosed, medical evaluation board (MEB) initiated

April 2008 to January 2010- nooooooothing……

January 2010 – testified before House Committee on Veterans Affairs regarding “Seamless Transition” between DoD and VA systems

February to May 2010 – multiple appointments

June to November 2010 – multiple complaints to get MEB paperwork completed

2011 – mostly nothing……

<insert intermission>

January 2012 – OOPS, case was terminated in June 2011 (Ft. Riley claimed we missed a deadline that we were not informed of, we were not notified that the case had been terminated)

June 2012 – records sent to Ft. McCoy to start new MEB under IDES

<insert theme from “Jeopardy”>

February 2013 – records arrived in Ft. Carson

March to May 2013 – repeat all examinations, tests, and paperwork from 2010 as it was all expired

June 2013 – MEB NARSUM sent to Physical Evaluation Board (PEB)

December 2013 – PEB rated 100% vision loss due to TBI, and 70% PTSD

January 2014 – notified that due to incompetency statement in NARSUM a legal guardian would need to be appointed, POA was not sufficient for payment/benefit purposes

February 2014 – officially medically retired

Bout damn time.


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