Pin Cushion or Guinea Pig?

This week we will be in Sioux Falls at the VA for a series of tests, aka poking and prodding.

Sean will have Pulmonary Function Tests (PFTs), a series of different breathing tests due to persistent sinusitis and repeated bronchitis along with a pulmonary sleep study.

CT scan of his sinuses, audiology evaluation, and an exam by ENT.

A colonoscopy and endoscopy.

Compensation and Pension review with mental health to evaluate his PTSD. 

Compensation and Pension review with optometry to evaluate his vision loss.

The C and P exams will be used to determine if Sean qualifies for a permanent and total disability rating.  The frustrating part for him is that these disabilities are already established and they are asking him to prove that he still has them and deserves the higher rating.

His reward for enduring all this will be a hunting trip.  We will meet up with my dad on the way home so they can go deer hunting in the Black Hills for the weekend.  No deer for Sean this year as he didn't apply for a license, but he will go along for the male bonding.  They always seem to have a wonderful time. 

Some of you may be thinking, "Is it really a good idea for a blind man to fire a weapon?"  If Sean applies for a license he just needs to designate a shooter to be with him.

Now, off to pack.

Fetch My Ruby Slippers, Toto

Back to Kansas does not make me a happy camper.

As usual, it rained all the way there.  Why does it always rain when I drive to Kansas?  Yet it beat the 40-60 mph winds on the way home accompanied by snow and icy roads the last hour and a half of the trip.  We drove down on Monday and home on Tuesday. 

All that for a 15 minute appointment.  You heard right. . . 15 minutes. 

The final NARSUM was reviewed by an MEB lawyer who believes that Dr. M's statements will be disregarded as 1) they don't match with his own interview notes and 2) the notes from Dr. H's neuropsych evaluation will be included.  Good news!

Five conditions were deemed to be permanently aggravated by service: postconcussive syndrome, irritable bowel syndrome, posttraumatic stress disorder, major depressive disorder, and vision loss.  The PEB will receive the MEB's findings as well as all of Sean's military medical records to make its disability rating for each condition.

He also recommended further testing for Sean's continued shortness of breath, recurrent sinus problems and nasal cysts, the loss of sensation in his hands and feet, and his neck pain. 

Which brings me to the trip.  At they lawyer's request an appointment was made with a doctor at Ft. Riley who does not work with the MEB, but does independent reviews and makes recommendations.  The appointment took literally 15 minutes.  The doctor came in, said hello, and handed Sean his report.  He had read the lawyer's requests and used Sean's medical notes to refute each one.  He did not ask Sean any questions or do any type of examination.  Seriously?  He could have done that by phone. 

He did recommend that Sean follow up with pulmonary tests due to his burn pit exposure and that he have his sinus cysts reviewed again.  He also thought Sean should have additional nerve testing for his loss of sensation.  But the kicker is:  he recommended Sean have it done at the VA with his primary care physician, not through the military.  So, he needs follow-up but. . . . . it's not our problem.

The lawyer has now drafted a new request that the army be responsible for the additional testing rather than just writing it off.  If his rebuttal is accepted, we may very well be going back to Kansas (I keep humming, "If I only had a brain."  Can't help myself).  Or, they may allow us to do the tests locally which means I'll be arranging the tests with doctors and Tricare. 

If not, the packet goes to the PEB which may or may not request the testing, and again their decision can be rebutted. 

There’s no place like home! 

There's no place like home!

There's no place like home!

R & R

In October our family took some much needed time for rest and relaxation.  We went camping with friends at Roy Lake, SD.  Sean went fishing and caught 3 trophy-sized bass!  Since it was mid-October the weather was chilly, but sunny.  We played games, toured historic Ft. Sisseton, and walked around the lake.  It was wonderful to have both our girls together before Erin moved to Minneapolis (again).  Sean said it was the most relaxed he has been in a very long time. 

Sean with his 18 1/2 inch bass

Keeley and Erin jump for joy (to be camping with their parents, I'm sure)

Touring at Ft. Sisseton

 

Walking along the lake



Melissa and Sean

Getting the campfire ready for s'mores

Be Careful What You Wish For

Well folks, we have been wishing that Dr. M would complete his notes for the NARSUM so the MEB could progress to the PEB phase.  Today, our wish came true.  The notes are done and doctors' signatures are being collected.  By Thursday we will have the final draft to forward to Lawyers for Warriors for their review.  This is good news!

Can you sense the "BUT" coming?

The neuro psychological report from Dr. M conflicts with the testing completed by Dr. H at the Black Hills VA last April.  Although both doctors found evidence of chronic PTSD, anxiety, and depression, they have differing opinions of Sean's character.  While Dr. H found Sean to be sincere and putting forth his best effort, Dr. M cannot rule out malingering and lack of effort, in fact, he states he is unable to accurately rate the testing due to Sean's exaggeration of his symptoms and their severity.  (In case you're wondering, I do have Sean's permission to include this).

Are you kidding me?? 

First, Sean has had two neuro psych evaluations done by the VA since 2008 and both are closely aligned.  It is puzzling that the third battery of tests conducted by a military provider would come out differently.

Second, anyone who knows Sean knows this is a load of crap!  Sean is the most decent, honest, morally upstanding person I know.  He does what is right because that is just what should be done.  Although there have been many issues due to his PTSD, they are symptoms and not what is at his core. 

Third, Sean LOVED being a soldier.  He used to say they would have to kick him out of the Army at age 60.  He would have gladly deployed 10 more times and done his duty to his country.

Fourth, Sean LOVED the fire department and his career there.  He was developing the Hazardous Materials Team and working to improve the department in every way.  He would not willingly give that up in order to "fake" an illness and obtain benefits from the government.

I could go on and on, but you get the picture.

Purple Hearts Elusive For Traumatic Brain Injuries

Another interesting article from NPR.

Purple Hearts Elusive For Traumatic Brain Injuries

Sean has been working with Senator Johnson's office for over a year to push through his request for a Purple Heart.  His first application, after hitting many snags while traveling up the chain of command (ranging from persons reviewing the application saying the event in question never took place to some saying he did not deserve the award) finally came back this spring with a letter stating that while he met the criteria for receiving a Purple Heart due to a mild TBI, the board would not be awarding it.

Sean received a letter last week from Senator Johnson with a response from the Chief, Congressional and Special Actions for the Army Review Boards Agency which states that due to an overwhelming caseload, Sean could expect a response no sooner than 12 months from now. 

Once again, an example of how our military leadership fails its members time and time again.

Football's Brain Injury Lessons Head To Battlefield

From NPR.  Studying concussions in football players may help the military treat TBI in soldiers.

Football's Brain Injury Lessons Head To Battlefield

"It makes me a little mad. People are like, oh well, you seem fine. Well, you know, I'm not. It's not like I'm missing a leg. But I'm missing something that I can never get back."

- Jake Mathers

I LOVED this quote, as did Sean.  It really sums things up!!

Veterans Sound Alarm Over Burn-Pit Exposure

NY Times article regarding burn pits in Iraq  Veterans Sound Alarm Over Burn-Pit Exposure

Burn Pits Action Center

Photos of the burn pit in Balad while Sean was stationed there.



The sign says "No Dumping"



Appointments, Appointments, Appointments!!

Currently we travel to Sioux Falls once a week to meet with a psychologist for PTSD.  In about a month he will start a peer support group for PTSD which meets once a month, also in Sioux Falls. 

Recently Sean had an ENT appointment for recurrent sinus infections.  As a result he needs to have a CT scan, follow up ENT and an audiology appointment. 

As part of the compensation and pension claim Sean submitted for permanent and total disability he will need to be reevaluated for TBI, low vision, and PTSD.  While he was told to bring his test results and records from all the appointments he had this past spring for the med board, he was also told that any non-VA provider's evaluation would not be given much consideration.  Instead of a neuro opthalmologist, he will see an opthalmologist.  Seems like a step in the wrong direction to me. 

Sean will also be scheduled for a colonoscopy and endoscopy due to continued issues with his digestive system. 

And as if those weren't enough, he will be having some bloodwork and pulmonary work (not at all sure what this entails as I missed the appointment and he couldn't remember) due to continued shortness of breath.  His primary care doctor suspects some of this is due to the burn pit exposure in Iraq. 

It's hard to look ahead when we keep coming back to this.  He might be able to have a couple appointments in town, but for many we will travel to Sioux Falls.  The first week of November we will be there for three days, but at least we were able to group them instead of driving twice in one week. 

I complain, but Sean has to go through all the examinations.

Sean is doing quite well and most of his symptoms have stabilized over time and with medication.  We are both pleased and encouraged by his progress.  He took on several adventures this summer and explored new opportunities.  Now when people ask, "How is Sean doing?" it feels great to say, "He's doing really well!" 

Frustrations

If you've been playing along at home you will not be surprised to hear that Dr. M. has not submitted his notes for the final NARSUM for Sean's MEB.  We heard mid-week that he was back from his leave (I personally hope he went somewhere warm and tropical) and the hospital commander had instructed him to have notes completed and turned in by Friday, a deadline set by Congresswoman Herseth Sandlin's office. 

Crossing fingers that it got done and we will receive beginning of next week.  

Once that step is complete, we will receive all documents and notes and have seven days to review them with assistance through the Lawyers for Warriors program.  Everything is reviewed with a fine-tooth comb and changes, rebuttals, or appeals are added.  From there it moves to a  Physical Evaluation Board (PEB) at Ft. Lewis, Washington where all evidence is reviewed and a decision is made regarding his disability rating and he is released from the Army. 

While the PEB has timelines within which to complete this review and rating, it can easily go the way of the MEB and stretch on indefinitely.  I would like to say we are feeling positive about this process and looking forward to a swift resolution, but. . . .

On another frustrating front, we have the VA, specifically the VBA (Veterans Benefits Administration), to contend with.  For the past four months they have reduced Sean's monthly benefit.  We went into the office in August and were given paperwork to resolve the error.  We have been in two subsequent times to ask about the status, and have gotten conflicting answers.  The first lady said it was processing and the money owed would be deposited mid-September.  The second lady (after the money was not deposited) told us that Sean's file was out of the office and nothing had been done on the claim. 

We know that his file is back in the office now, so maybe he will get his back pay with his October benefits pay before they owe for five months.

Cycling Clinic

Captain Mike Willman and Stoker Sean Johnson getting set for time trial in the velodrome

Sean and Mike during hill training

The Group

Sean and Mike at road time trials

Riding in road time trials

Road time trials

Following road time trials--exhausted!

Sean and Mike

Power testing

In September Sean attended a week-long cycling clinic for paralymic hopefuls in Colorado Springs, Colorado.  Training included 15 mile bike rides in the morning and again in the evening around routes in the Rocky Mountains.  They rode up, down, and around winding hills through beautiful scenery. 

Sean learned a lot, improved his technique, and made many friends.  The trip was rewarding and  fun in spite of the grueling training schedule.

He learned pack-riding techniques for riding with a group, track training in the velodrome, road techniques, drills for speed and endurance.  He participated in time trials which compare the rider's time to national standards as well as 3 K and 12 K racing.

Sean's goals following the clinic are to continue to train and improve in order to advance through the next four training standards to reach the national team standard for the paralympics.  He plans to attend future clinics and hopes to participate in upcoming races.

His long-term goal:  to become a paralympic rider.

October is Blind Awareness Month

October is Blind Awareness Month!
White Cane Day is October 15th.

Here are some tips as published by the BVA:

What to do When You See a Blind Person  

When you address a blind person, identify yourself immediately so there is no mystery as to who you are.

 Speak directly to a blind person so the individual can follow your voice.

 Don’t assume that a blind person is unable to participate in certain activities. Let that person make the decision.

When guiding a blind person, offer your arm for assistance. A blind person can anticipate your
movements by walking slightly behind you.

When you’re leaving … say so.

It’s okay to use words like “look,” “see,” and “blind.” Avoiding them may make a blind person self-conscious.

Offer understanding, consideration, and friendship to a blind person – not pity!

Caution a blind person about ascending or descending stairs, curbs, or obstacles.

Offer assistance when you see a blind person trying to cross a busy intersection, but don’t be discouraged by a “No, thank you.”

Offer to read newspapers, magazines, and other printed material for a blind person.

Let blind people speak for themselves – they don’t need interpreters.

When speaking to a blind person, don’t raise your voice. Remember, that person is blind, not deaf.

Don’t distract a guide dog from his main purpose of safely leading his master. Ask for permission before petting.

Guide Dog Etiquette from Guide Dogs for the Blind

Overview on Orientation and Mobility from the Palo Alto VA

When the War Comes Home

Interesting video report from MSNBC.com following three soldiers with PTSD.
When the War Comes Home
 
Reminds me of the Montgomery Gentry song "Oughta Be More Songs About That"
 

. . . and more songs about them soldiers whose war is never over who made it home but never quite came back. . . oughta be more songs 'bout that.

Brain Injuries Remain Undiagnosed in Thousands of Soldiers

Interesting article from Pro Publica and NPR.

Brain Injuries Remain Undiagnosed in Thousands of Soldiers

Read more about their ongoing investigation here:

Brain Wars: How the Military Is Failing Its Wounded

Legislation to improve rehabilitation services for veterans suffering from traumatic brain injury (TBI)
Bilirakis Introduces Legislation to Improve Services for Veterans with Traumatic Brain Injury