Rocky Mountain High

In July 2010 Sean travelled to Colorado Springs, CO courtesy of the USABA (United States Association of Blind Athletes) for the 2010 National Sports Festival in Conjunction with the Rocky Mountain State Games. 

During the first half of the week, athletes had the opportunity to learn and refine their skills in various sports clinics instructed by USABA national coaches.  They then had the opportunity to compete in the Rocky Mountain State Games. 

Sean competed in tandem cycling with captain Jeff Tracey.  They won a gold medal completing the race in approximately 27 minutes (the next closest time was 36 minutes). 

In tandem cycling, the stoker pedals from the rear seat of the tandem, adding power, making the bike go faster and farther.  This is the position for visually impaired cyclists. The cyclist in the front seat, the captain, controls the steering, shifting, and braking.

Sean also competed in shotput and discus.  He won silver medals for second place in both events.

Captain Jeff Tracey and Sean

Tandem Cycling

Getting on My Own Nerves

This past week has been entirely too stressful!  I'm starting to irritate myself.  I'm have been cleaning obsessively because I'm stressed and need to feel in control.  Save your invitations, I'm not coming to your house.

I think and re-think and obsess. . . . I tell Sean, "Stop.  We are not talking about your med board anymore."  only to start the conversation myself moments later.  I. Am. So. Angry. And. Frustrated.

Jordan is moving this week to Mankato where he will live with Sean's brother and family.  He will be working and will attend South Central College there in January.  We were supposed to go with to see him off and visit Erin (we haven't seen her since July 7th).  Now this trip has forced us to change our plans.  I'm extremely disappointed. 

We will be attending the 65th Blinded Veterans Association Convention in Washington DC beginning on Friday.  I have been looking forward to this trip all year.  In fact, we are arriving a couple days early to have some extra time with friends before the convention begins. 

We fly out for the MEB appointment on Tuesday morning, return home Thursday late afternoon, and fly to DC Friday morning for ten days.  I have my sister staying with Keeley while we're gone.  I was feeling bad about leaving her for ten days, now it's 13.  And I'm missing her first day of school (to be honest, at 16, I wouldn't really be a part of that). 

I thought all the phone calls and emails and frustration with scheduling this appointment was overwhelming. . . now I'm dealing with the travel schedule and wondering how to pack with barely enough time between trips to sleep.  Not that I sleep anyway, so what's the difference?

I am seriously lobbying for my own room.  Sean kicks, twitches, jerks, has night terrors and night sweats, and snores OBNOXIOUSLY loud.  By obnoxiously, I mean he will snore so loudly he wakes himself up and asks, "what happened?"  He has actually snored so loudly that the dog got up and sniffed his mouth!!  When I bring up sleeping in another room, Sean is so unhappy that I decide to stay and make do. 

The start of school saddens me.  I know that I could not balance work and home, even with two kids gone.  I could not take another busy and stressful year and still be able to say I don't scare small children.  But I am missing my room and the routine of back-to-school preparations. 

So I'm setting my sights on the Convention, and traveling to MN to visit the kids over Labor Day weekend.  Sean has a trip mid-September and I will have a week with the bed to myself.

Stuck in the Middle With You

Clowns to the left of me, jokers to the right, here I am stuck in the middle with you.

We should be nearing the end of the medical evaluation board (MEB) process, emphasis on the word should.  Of course, things are not going according to plan. 

I'm going to post the edited and re-edited version of this one as I just read what I wrote, and obviously I was not a happy girl. 

Long story short, when we went for Sean's med board appointments in May Dr. M requested a neuro psychological evaluation as the previous one was outdated.  We told him we were trying to have appointments done close to home, so he told us exactly what the test needed to include.  We travelled to the Black Hills VA in Sturgis, SD to have that testing done in April, and Dr. M was given the results of that test within a week. 

In June, we inquired about the NARSUM (narrative summary) which should have been completed by the doctors so we could review and Sean's case could go forward to the next level and he could complete his medical retirement.  There were still no dictation notes from Dr. M.  We worked with our PEBLO who despite multiple attempts did not get notes from Dr. M.  In fact, in July during a meeting to discuss the lack of progress, Dr. M asked for a copy of Sean's testing report--the one he was given in April.  Another two weeks passed and we asked Eric Bursch of Congresswoman Herseth Sandlin's office to make some inquiries.  Following this, we were contacted by the PEBLO and told we would need to return to post and have the testing repeated as Dr. M said the testing was inadequate because it was done at a VA facility and would not be acceptable for the MEB/PEB.  What??  Apparently, only the military can administer the tests properly?  You might have mentioned this in March, or April, or anytime before now. 

We were given three dates, none of them convenient, and told to make it work. I was told by one individual that the MEB should be our priority. . . we jumped through numerous hoops in April and May and did everything that was asked of us.  We know it's a priority.  I think it should be a priority with the doctors as well.

Then we were told that funding is short, so Sean might have to travel with someone from his unit, or I might have to drive, or they might not be able to pay for the trip. 

How is it that the Army could send my husband anywhere they want at a moment's notice, put him in harm's way, and will fund his mission 100%, but when he comes back disabled and suffering from multiple afflictions, well, you're on your own.  When they want him to travel for an appointment--an appointment that should not be necessary but for doctor's oversight--there might not money available?

Thanks to Eric Bursch and the support of Representative  Herseth Sandlin's office, the funding issues were resolved rather quickly.  Funny thing, the people I was talking to regarding travel and orders were MUCH nicer to me after they had spoken to him.  Sad, really. 

I do not understand why the VA and DoD systems cannot work together. Why is it not possible for a test administered by a medical professional at the VA not good enough for the Army and vice versa?

I do not understand why the VA and the DoD want Sean to prove and reprove his injuries.  They are withholding benefits because they don't know if he might improve?  It's been four years!  How about a system that supports and compensates without degrading and frustrating servicemembers who put their lives on the line?  How about "taking care of our own?"

As Congressman Phil Roe said at the hearing, "We spend $1 million per year to keep you in combat, to keep you in harms way, we get you home, we don’t have that same commitment to you."  Exactly!

Completing the med board affects Sean's Post 9-11 GI Bill, which he transferred to Erin and therefore affects our payments to her college.  Depending on his final rating from the physical evaluation board (PEB), there will be a monthly retirement income from the Army, and health insurance benefit.

We are also waiting for the VA to make a compensation and pension rating that would award him for permanent and total disabilty.  This would allow each of the kids to draw a monthly payment for college under the Survivors’ and Dependents’ Educational Assistance Program (DEA).  With 2 kids currently in college and the third headed there in two years, this is a HUGE benefit.  Sean may also qualify for grants to improve the house and make it more accessible for him, and to replace our vehicle since we travel so much for appointments. 
Why not process and pay based on the actual physical evidence, and if the condition changes, make modifications? Believe me, Sean would be thrilled if his vision came back, and his mind came back, and his pain went away, and he could return to his former life. He would have no problem amending his benefits if his life turned around as they seem to be "waiting to see."


Did I say I'd make this short?  We will be flying out Tuesday morning and returning Thursday afternoon.  Sean will repeat the testing as asked, and we have been assured that Dr. M will be required to complete his dictation ASAP.  Sean's case will move forward to the PEB quickly.  For their sake, I hope so, because we've learned that a few phone calls is all it takes to turn things around. . . . and my dialing finger is ready!

The Caregivers and Veterans Omnibus Health Services Act (S. 1963)

House Passes Landmark Bill to Care for Women Veterans and Provide Support for Veteran Caregivers 

Video: President Barack Obama signs the landmark veterans' caregiver bill at the White House. Official White House video, released.

Military Update: Many angles to caregiver bill
By Tom Philpott
Special to Stars and Stripes

Sen. Daniel Akaka (D-Hawaii), chairman of the Senate Veterans Affairs Committee, endorsed House changes to the original Senate bill, passed last November, and swiftly shepherded it through final passage.

“For too long, the families of wounded warriors across America have paid the cost of war without sufficient support from the government [that] their loved ones risked all to serve. I look forward to President Obama signing this important bill for the families of disabled veterans, and for women veterans, veterans in rural areas, and those veterans sleeping on the streets tonight,” Akaka said.

Rep. Bob Filner (D-Calif.), chairman of the House committee, said caregivers of “heroes” who returned from Iraq or Afghanistan brain-damaged or with other severe wounds have had to quit their jobs, putting financial strain on families. As voluntary caregivers, they also have received little or no training in care delivery.

The new law, he said, will provide pay “to make up for loss of income; training to the caregiver; funds for respite care and some other expenses. It’s not just the young man or woman who comes home [who is changed]. It’s the whole family involved and we’ve got to help the whole family.

Hitting the Slopes

Sean and Erin took a trip at the beginning of April 2010 to Snowmass, Colorado for the National Disabled Veterans Winter Sports Clinic. 

Sean and Erin

Team Headwall

Ready to ski

There they had the opportunity to ski, snowboard, snowmobile, and scuba dive! The weather was beautiful with temperatures in the 60s and 70s.

Snowmobiling

Scuba Diving

They both loved learning to play goalball.  Goalball is a team sport designed for blind athletes.  Players compete in teams of three, and try to throw a ball that has bells embedded in it into the opponents' goal.  They use the sound of the bell to judge the position and movement of the ball.  Blindfolds are used for sighted players or those with partial sight.

Goalball

Erin had the opportunity to meet other disabled veterans and family members.  She found it reassuring that her dad isn't the only one, and learned a lot about the resilience of wounded warriors. 

For Sean, it was another chance to push his limits, try new things, and help him discover that his disabilities do not define him. 

There were several olympic and paralympic athletes in attendance including Andy Finch, Bode Miller, Casey Puckett, Chris Klug, and Gretchen Bleiler.

Erin and Chris Klug

Andy Finch with Erin

Sean, Bode Miller and Casey Puckett

Med Board Blues

You've heard of March Madness?  Well, I'd like to give it a new spin.

In March Sean officially began the process for his medical evaluation board (MEB) through the Army which would allow him to take a medical retirement .  We have been waiting for this to proceed for almost two years.   

Following our testimony and meetings in Washington, DC in January, there was some Congressional pressure applied to get people moving.  Suddenly we had people calling and scheduling appointments.  Great!  However, a nurse would call and say they had an opening that afternoon (Um, no.  We're 10 hours away.), oh can you be here at 10 tomorrow?  (Seriously?)  They were scrambling, but no organized plan in sight.

Fortunately we connected with a Physical Evaluation Board Liaison Officer (PEBLO) who worked dilligently to arrange all Sean's appointments with various departments within the same week at the end of March. 
Orthopedics:  examined his 1998 knee injury
Psychiatry:  requested repeat neuro psychological evaluation
Ophthalmology:  requested repeat evaluation by neuro ophthalmologist
The neuro ophthalmologist requested an MRA, MRI of orbits (eyes), and an electroretinography (ERG).
Neurology:  requested repeat visual evoked potentials (VEP)
Physical:  requested repeat MRI

With some difficulty, Sean was put on orders to fly us down for his week of appointments. Despite the push to have Sean's evaluations done in a timely manner, the job of issuing the orders was a "hot potato" with no one doing the job, and everyone denying it was their responsibility.

We were told at week's end that Sean needed to have the above testing requested by each department completed. . . at the military base. . . as schedules allowed. . . meaning mulitple trips back and forth.  Sean requested that he be allowed to arrange the appointments closer to home to make it easier for him and for our family.  It was agreed that we would work with Tricare to find providers and set up the appointments--and have it all completed within 30 days!

Little did I know what I was agreeing to do!  I spent most of April on the phone with Tricare trying to get each test approved.  I was on the internet searching for providers, then contacting each provider to ask if they were a Tricare provider, accepting new patients, and could see Sean within 30 days.  In the meantime, Tricare was sending me letters with appointments they had arranged in places like Independence, MO, and Topeka, KS.  I was calling and cancelling those appointments and making new ones closer to home.  By close I mean within six hours driving distance.  We travelled to Minot, ND, Sturgis, SD, and Minneapolis, MN, and Sioux Falls (3 times) in less than a month.

There was great confusion over the MRI as Tricare refused to approve it in Aberdeen, instead telling me every time I called that Sean could have it done on post--10 hours away.  Ridiculous!
While it took longer than 30 days (we had to make multiple requests to the doctor on post to submit a request for an MRI in Aberdeen), we managed to have all testing completed and results submitted by mid-May. 

Then, we waited for the doctors to write the NARSUM, or narrative summary, which will eventually go to the Physical Evaluation Board (PEB) for a final rating decision and discharge.  We are still waiting.

Taking It On The Road

2010 will be known as the "year of the road trip" in our house.  We have actually been traveling for appointments for the past three years along with making trips to visit Sean when he was away, but 2010 will take the top prize for mileage.

We (and by "we" of course I mean "I") will have driven roughly 12,781 miles by the end of August this year.  This calculation just includes round-trip road miles, not daily miles.

Sean currently has an appointment once a week in Sioux Falls, so adding in those trips through the remainder of the year, we will reach a grand total around 19,277 miles (daily driving to school and work, etc. averages 12,000-15,00 miles per year--so we would really be closer to 34,277!! ).

In addition, Sean and I flew to DC in January and will return in August.  Sean and Erin went skiing in Snowmass, CO in March.  Sean went to Colorado Springs for the Rocky Mountain State Games in July.  In August Sean and Keeley went to a summer sports camp in Birmingham, Alabama.  We went to Kansas in March for appointments and will return later this month. 

Does anyone else think this is ridiculous?

Hanging in the Wind

I need to go back and clarify a little.  Sean was pleased with the PTSD program in St. Cloud, and he came out feeling better in many ways.  We saw changes at home and the first month home went exceptionally well.  I do not mean to knock the program, and after reading Sean's medical notes, I believe they did a fine job.  HOWEVER, if you listened to any of my testimony you are aware that during the 2 1/2 months Sean was a patient at the St. Cloud VA, no one ever contacted me.  Not a doctor, not a psychologist, not a psychiatrist, no nurses, no social workers, no case managers.  Not once.  I feel that was a HUGE oversight to leave the family component completely out of the picture.  They did not ask for any input regarding the problems he has at home, or what our concerns were.  They also did NOT call or make contact to give feedback or updates on Sean's progress, or to help us understand PTSD or his treatment plan.  What they did do was send home his medical records from his stay--all 375 pages--and say, "Tell your wife to call if she has any questions."  Are you kidding me? 

As if it wasn't bad enough that it took three years to get Sean into a comprehensive program (delays were due to faulty diagnosis, need for blind rehab, etc.), now they were turning him loose without adequately educating the people who live with and care for him.  I think that's a shame.  The VA needs to do a better job of involving the family members and caregivers, and providing them with the information and education they need.  It cannot simply be, "You have PTSD.  See you next week."  We go home and live with this EVERY day, they only have to think about us for the hour we're in the office.  I think their policies would change if they had to spend their lives the way we do. 

I can see I'm worked up by my excessive use of CAPS.  Deep breathing. . . counting to 10. . . again. . . . and again. . .

After Sean returned from the PTSD program in St. Cloud we read through all 375 pages of medical notes.  Then I contacted our case worker to ask about follow up.  It took several weeks for the response from the VA that Sean's follow up would consist of EMDR treatment.  Another two weeks and the provider had been lined up in Sioux Falls for appointments every other week. 
These appointments began the week after my leave of absence started, so in spite of my regrets, it truly was the best decision for us and for my students. 

I read a book on EMDR and quite honestly, I cannot say whether I think it is the miracle breakthrough it claims to be, or if I think it's too good to be true, but since I am not the mental health professional, I'll let my opinions go.  Suffice it to say I am not able to describe the process any better than to say it involves a long light bar which in Sean's case had to be directly in front of his eyes.  The light moves back and forth and as you follow the light with your eyes there are tones played in alternate ears on headphones.  The therapist then asks you to focus on a trauma, do a little talking, the watch the lights and listen to the tones and it's supposed to help the brain process the information. 

Well, the light hurt Sean's eyes, he had pain from moving his eyes side to side.  The tones in his ears agitated him (as to most bells, sirens, beeps).  So not much got done in therapy. 

After about six sessions he talked to Dr. K in mid April and asked for alternatives.  Dr. K suggested he switch to Cognitive Processing Therapy (CPT).  Sean contacted our case worker and she agreed to make the arrangements.  Finally in mid-June an appointment was arranged with a psychologist at the Sioux Falls VA.  Now it is August and he is finally getting started with the CPT.  It feels like we have wasted seven months.  I understand that things take time, but does it really need to be so difficult to get treatment?

Sean has been most frustrated by the lack of peer support group options and family options.  In St. Cloud he met with an OIF peer support group every day.  We do not have a group in Aberdeen.  The group in Sioux Falls is closed, so he must wait until fall when a new group starts.  Dr. K told us he was trying to get a provider to travel to Aberdeen one day a month to start a group as he had plenty of patients willing to participate.  When I asked one case manager about the possibility, she told me there were not enough people interested in Aberdeen.  Who should we believe?  The doctor who works with the patients, or the case manager who does not know them?  At any rate, I think the VA needs to find a way to either provide traveling staff to rural areas for both 1:1 and group therapy, and they need to more adequately use their V-Tel technology.  Good grief, we have three computers in our home with webcams.  It seems to me that it would be inexpensive to link up a group of 10 soldiers from anywhere in the country with a provider once or twice a month. 

So now, almost eight months after being released from St. Cloud, Sean is getting appropriate follow up for his PTSD symptoms.  Man, if I moved this slowly at my job I would be FIRED!

Tough Choices

The time had come to make a monumental decision because something had to give.  I sat down with my principal and discussed my options, which were few.  With a heavy heart and guilty conscience, I took a leave of absence beginning in February 2010 so that I could devote more time to taking care of Sean and our family.

I felt terrible, as though I was abandoning my class, my students, my coworkers.  I felt like I'd had a massive weight lifted at the same time as I would no longer have the responsibility of running a classroom.  There was an excellent replacement lined up to finish out my year, so I was leaving the students in capable hands.  It was a time of confusion and sadness, loss and relief. 

But I knew it had to be done.  I had been keeping too many things in the air for too long.  I needed to be strong and rested in order to best be there for Sean. 

I have since decided not to return for the 2010-2011 school year.  Currently we are traveling to Sioux Falls weekly and that is not conducive to teaching.  There has also been some hold up with getting the PTSD follow up, so that is not as far along as we would like.  The best thing for us for the time being is for me to be home and continue to manage Sean's care and take care of myself.

It's Always Something

After taking three days off for the trip to Washington, DC, I returned to work on Monday and tried to catch up.  That morning Sean had been experiencing sharp eye pain.  I went home at lunch to check on him and there was no improvement in pain despite his having taken two pain pills.  I called the CBOC and was advised to take him to the ER.

I returned to work and made arrangements with my principal to leave for the afternoon.  I made some hasty notes for my substitute and picked Sean up.

We spent the next four hours in a dark room at the ER (the light was too much for his eyes) where he was given IV fluids and four shots for his pain.  As I sat in the dark I thought about how the last time we had been in at the hospital he lost most of his vision and how unprepared we were to deal with that change.  I thought, "What am I going to do if this gets worse?  What if he loses his sight completely, or if he falls and hits his head, or . . . or. . . or. . . "

Thus far we had dealt with everything as it came along and limped along in between.  I started thinking that I was in no position to deal with another change, and certainly not a challenge.  How would I be available to help him when I was already juggling so much and feeling like I was doing none of it well?

It was time to talk to my principal more seriously and consider all the options for our family.

Interesting

As soon as Sean's name hit the list for the hearing, we were warned that people would be scrambling to either "fix the problems" or "make promises" to influence our testimony.  Sure enough, our first calls came from the VA wanting to know how things were going, and whether we needed assistance with anything.

Well, of course!  Sean has been trying to get proper compensation and pension benefits since he lost his vison a year ago.  But that wasn't really the intent of the call.

Next, we suddenly had a Federal Recovery Coordinator calling us, saying Sean's case had just been assigned to her.  Sean was never assigned to an FRC and in fact we didn't even know such a person existed.  The FRC Program was created to identify services needed for seriously wounded and ill service members, veterans and their families,and help bridge the gap between the DoD and VA.  The call came in the night before we left for DC. 

We have been working with our FRC, Ms. H, since January and I'm pleased to say that she has been extremely helpful.  We wrote goals and developed a Federal Individualized Recovery Plan (FIRP) to aid in making sure all our needs are met.  She has definitely been an asset.  It makes dealing with issues at the VA less painful as we now have a resource who knows the policies and procedures and is on our side.  I wish we had been assigned an FRC sooner as we might have avoided a lot of problems along the way.

The most interesting (and disturbing) call was a woman from the Army Reserve office who wanted a copy of Sean's testimony so she could "edit the copy for grammar" and "discuss the testimony" with Sean.  Yeah, I don't think so.  Turns out when we passed the name around a bit that she was a high-ranking official for the Army Reserve and she had already been denied a copy by the Subcommittee staff earlier that day.

Awesome Opportunity

The first week of January brought an exciting opportunity for us.  We were contacted by Tom Zampieri, Director of Government Relations for the Blinded Veterans Association and asked to testify before the House Committee on Veterans' Affairs Subcommittee on Oversight and Investigations.  We travelled to Washington, DC where Tom led us around Capitol Hill for three days.  After arriving in DC and checking into the hotel, we met up with Tom and we were off and running. 

First, we had a meeting with the Subcommittee staff to tell our story and be briefed on the format of the proceedings.  What a friendly and dedicated group of people!  I apologize for not remember everyone's names, but thank you to each one for your assistance and support.

Next, we met with Congresswoman Stephanie Herseth Sandlin and Legislative Assistant Eric Bursch.  Representative Herseth Sandlin had a most welcoming manner and listened intently to Sean.  We discussed the issues with transition from the DoD to the VA system, and the difficulties encountered with both VA and DoD benefits.  Since this meeting we have had steady contact with Mr. Bursch to follow up on the situation and provide assistance.

That evening we returned to BVA Headquarters in Chinatown and were escorted to supper by Christina Hitchcock, Exectutive Assistant at the BVA.   Christina is the woman behind the scenes for BVA's national conventions among other things.  We enjoyed a wonderful meal and great conversation.

Thursday, January 21, 2010 we were up early for breakfast and on our way to the Cannon House Office Building with Tom where we would be giving our testimony.  We had a moment to meet Congressman Harry Mitchell of Arizona, Chairman, Subcommittee on Oversight and Investigations before we began. 

Click here to read the statements and testimonies.  There is also a complete transcript available.  If you follow this link you can watch the video of proceedings and testimonies.

Click here to read an article by Bob Brewin about the hearing.

I cannot tell you how intense it felt sitting at the table, all eyes on Sean, listening to him speak about his experiences.  I was so proud of him!  Then, it was my turn (I was hoping I wouldn't have to speak!) and I was able to detail the impact on our family.  It was an awe-inspiring experience to say the least!

It was wonderful to hear Sean receive thanks for his service and sacrifice, and to have so many intent ears listening to the story.  Many times at home we feel isolated in our circumstances.  For the first time we had the chance to say, "If this has happened to us, then to how many others?"  It was the perfect opportunity for us to promote support for Army Reserve and National Guard soldiers who so often fall through the cracks of the DoD system upon returning home, along with the veterans in rural areas who find access to appropriate health care and mental health services challenging. 

We shook many hands and collected many business cards following the hearing.  There were so many people and faces that I surely can't remember them all.  I can tell you that several have been in contact with us over the months and continue to follow Sean's progress.

We went from the hearing to a meeting with the Armed Services Committee and then on to meet with Senator John Thune and his staff.  We discussed the delay in Sean's medical board which would allow him to medically retire from the military (this process was started in 2007).  Sean and I had each met Senator Thune previously, and again we were impressed by his sincerity and concern.  We continue to be in contact with his office regarding our concerns.

Senator Thune, Melissa, and Sean

Up next was a meeting with Senator Tim Johnson and members of his staff.  We had met with Senator Johnson in 2006 while Sean was evaulated at WRAMC and he asked Sean for an update on his status.  We also talked about the Vision Center of Excellence and the lack of progress by the DoD and VA to facilitate its existence.  Senator Johnson made it clear that he will continue to support our nation's veterans.  We have worked closely with his office since 2006 and are grateful for his support and assistance.

Tom Zampieri, Sean, Senator Johnson, and Melissa

We went to supper with Christina and Tom and reviewed the day's whirlwind happenings.  I'm not sure how Tom keeps his busy schedule!  It was nice to relax and unwind after a long and successful day. 

On Friday we had some free time and took a guided accessible tour of the Capitol Building.  The tour was unique as the guide was able to let Sean touch different things, and go "behind the cord" in several rooms.  We met Christina and Tom Miller, BVA Executive Director for lunch before walking to Ford's Theater.  I was disappointed to hear that the theater is being renovated and we were not able to tour anything except the museum downstairs. 

US Capitol

Sean touring the Old Senate Chamber

When we arrived at the airport, tired and ready to go home, we learned that our flight out of Minneapolis had been cancelled due to bad weather.  We landed in Minneapolis around 10:00 PM and found a hotel close by.  The next morning we flew out after much discussion and several phone calls by the pilot and flight crew.  As we neared Aberdeen the captain informed us that the plane was unable to land due to heavy fog, so we were rerouted to Pierre, SD and were sent on a four hour bus ride home.  We were certainly glad to be back after that!

A New Outlook

By January 2010 we were feeling fairly confident with the CBOC and VA hospital.  Dr. S had joined the CBOC in Aberdeen marking the first time in three years that a full-time doctor was on staff locally.  Sean would still see Dr. H for follow-up or changes in his condition, but now he had a primary care physician for all his health needs. 

He had completed both blind rehab and inpatient PTSD treatment the previous year with positive outcomes.  He had a better handle on his symptoms, and medication was helping stabilize others.  Sean was coming to terms with the fact that his chronic pain, dizziness, and nausea might not improve, and was trying to find a positive focus. 

We were working on organization strategies to help him with his memory and cognitive deficits.  I was practing patience when repeating directions or conversations.  Sean was more responsive when I would point out that he was agitated or angry, and there was more peace in the house.

We made a decision not to chase physical symptoms any longer unless there was a change or an emergency.  It was time to focus on PTSD follow-up and maintenance and try to get at the root of his problems so we could move on with our lives.

Wow, it all sounds so nice!  But it was not exactly a Rockwell painting.  We had three teenagers and, sorry kids, we love you BUT, there was always chaos in the house.  The girls couldn't decide if they loved or hated each other.  Our son had a constant stream of friends coming and going out of the basement.  Someone always had an event, an assignment, a need.  And let's face it, they didn't help out quite as much as we would have liked.

I had been given a break in 2009 with Sean being in hospitals for more than five months out of the year, but now that he was home there would be the demands of getting him to and fro. 

The school year was not going smoothly, I felt I was always running in high gear and spending a disproportionate amount of time on discipline when I would have rather been spending it on education. 

So as I re-read those first few paragraphs I think, "Yes, that's were we were. . . in theory."  But in reality, I was a trainwreck!  I was so tightly wound and unhappy with things around me, and within me, that it was hard to function. 

Almost five years had passed since Sean had been activated for duty, and those five years and the trials they brought had definately taken their toll on me, on all of us.

The difference now was, there was a faint light at the end of the tunnel.

Happy New Year!

Mission 2010:  emphasize quality of life.

We have spent so much time and energy looking for the root of the problem, waiting for answers, going to treatment and appointments, searching for answers. . .

We now have the answers that are available.  We know the professionals who will continue to guide us on this journey.  The medication regimine has helped stabilize many symptoms. 

The time has come to shift our focus from what and why. . . . to how?

How can we make the most of our lives?  How can we spend our time with quality?  How can we take what we have learned and give back? 

I have found that changing my focus has helped me reflect on the blessings in our lives and look for new opportunities to enjoy life.  I want Sean to have a postive life.  I want him to see the potential in his life, to realize all he has to offer, despite his disabilities. 

How do we begin to do this?  Well, we start with a surprising opportunity, add a few roadblocks (because without them the plot would stagnate), and slowly work toward changing our attitudes.

The Holidays

Since Sean was an inpatient 4 1/2 hours away from home, we decided to pick him up and spend Thanksgiving with his brother's family in Mankato, MN.  We had a fun weekend!  It was such a relief to see Sean relaxed and smiling, although he was very tired.  We enjoyed being together as a family and seeing our niece and nephew. 

Thanksgiving 2009

The program ended on December 23rd, so I made arrangements to leave school early that day.  The plan was to drive to St. Cloud, load Sean up, and drive home--a quick 10 hour trip!

The Christmas Blizzard of 2009 that brought snow from Canada to Dallas, TX started that afternoon.  My youngest daughter K and I set out before the storm began.  Several times I talked to Sean and warned that the weather was going to get bad.  He wanted to come home for Christmas so badly that he insisted I try it anyway. 

We drove in freezing drizzle, then sleet, then some light snow on the way to St. Cloud.  The roads were drivable, but it was definitely slowing us down. 

When we arrived in St. Cloud, the sky was clear and snow had stopped.  We quickly got Sean loaded, ran through the drive thru and got back on the road.  As soon as we left town the sky opened and snow came falling full force.  The storm was forecast to last at least three days, meaning if we had to stop somewhere along the way we would likely be stuck there until the weekend.  I did not want to have our family separated for Christmas, so we decided to go town by town and make our decision to stay or go along the way. 

The roads quickly got nasty.  The wind cut visibility to nearly nothing.  The snow packed onto the roads.  At times I was simply following the tracks I could see in front of me.  It was possibly the most tense drive I have ever made.  I prayed the whole way home that we would be safe and not go off the road or get stranded. 

13 1/2 hours later we made it home. . . . and got stuck in the driveway trying to get into the garage! 

With the storm we were blessed with a quiet Christmas, just the five of us snowed in the house for four days.  It was one of the most peaceful and relaxing holidays I have had in a long time.

Gone Again

October 2009 came and took my husband with it.  After much planning and discussion with Dr. K and Dr. H, it was decided that Sean would benefit from a 2 1/2 month inpatient stay at the St. Cloud VA for their PTSD program.

And not a moment too soon!  Sean was having many angry outbursts and rages.  It had gotten so bad that he would cuss and swear at the dog for needing to go outside.

There was a "look" on his face and a "tone" in his voice that were imperceptible to him, but kept the rest of us on edge.  The nightmares and night sweats were persistent.  He was still having the staring episodes (now thought to be a type of flashback) and memory problems. 

We drove him to St. Cloud on October 19th and once again left him behind while we drove out of sight.  It does not get any easier.

The format was mostly group sessions with regular one on one meetings with the psychologist, social worker, and pastor.  He received EMDR (eye movement desensitization and reprocessing) therapy for pain management with limited success. 

Sean felt he benefited from the program and was feeling much more secure and confident while he was in treatment.  His night terrors continued and he was waking up each night, sometimes with the nurses finding him on the floor.  His medications were increased several times to help with his sleep and anxiety.  These changes make it easier for Sean to fall back to sleep and help him feel more comfortable out in the world, but they do not "fix" the underlying problems.  The psychologist felt that although Sean had some initial success, he is a long way from finding the root of the problem and until that is discovered, there will be limited recovery. 

While participating in the program Sean made good friends with whom he still keeps in touch.  The common bond they share has been quite therapeutic for him.

Fish Stories

September 2009 brought the first of many exciting opportunities for Sean as a wounded veteran.  He was invited to take a week long fly-fishing trip in Sun Valley, Idaho through Sun Valley Adaptive Sports. 

Sean and my dad, Jim, had the opportunity to learn fly-fishing in the fabulous Silver Creek and private fishing holes in surrounding areas.  Here you can watch a short video of fly-fishing trip.

Sean earned the rights to two great "fish stories" when he caught two rainbow trout, the first of which measured 32" and 10 lbs and the second 30" and 8 lbs!

The Crew

Learing the basics

Big Rainbow Trout

The Convention

The Blinded Veterans Association Convention was held in Portland, Oregon the last week of August 2009.  We made some amazing friends on this trip!!  We also got to know some of the BVA staff and made some wonderful connections in addition to gaining new and useful information.

Activities included:

Kayaking on the Willamette River
click to read Sean's interview in the Oregonian

Rockwall climbing

Tandem biking

Portland Beavers baseball game

Exhibit Hall showcasing technology and assitive devices for the blind

Sean at Chinese Gardens

Getting ready for tandem biking

Rockwall climbing

The Gang

BVA Attendees

Sean and Melissa

Kayaking

We have managed to keep in touch with several people we met last summer and are looking forward to seeing some of them at the 65th convention in Washington, DC this summer. 

Who's Going to Drive?

Sean came home a week before our son, J, graduated from high school.  It was a crazy busy week preparing for graduation and working in my classroom to end the year.  When all was said and done and the last day finally came, we breathed a sigh of relief and went out with a few teachers for the traditional "Poets Club" meeting aka drinks after school.

It was a gorgeous day and we sat on the patio laughing and relaxing.  We went home for supper and around 10 PM I decided I was going downstairs for a much-deserved bath in my jacuzzi tub. 

On the last step down my foot slipped out from under me.  My leg went one direction and my foot went the other.  I had broken both bones in my leg just above the ankle and dislocated my ankle.  The pain was excruciating.  I screamed and yelled in a manner unbecomming of a lady.  I'm sure I could be heard blocks away.  It reminds me of the scene in A Christmas Story when Ralphie's father is working on the furnace and Ralphie says, "In the heat of battle, my father wove a tapestry of obscenity that as far as we know, is still hanging in space over Lake Michigan."

An ambulance ride, night in the ER, and surgery the following morning to put in more hardware than I care to think about.  Then the good news.  No pressure on the foot for two months.  No walking.  No driving.  Well, crap.  Now we had a house of five with two grownups who couldn't drive. 

The girls played chauffer for all of our appointments.  The kids and Sean took on the bulk of the work, buying groceries, cleaning, errands, walking the dog, while I tried in futility to find something worth watching on television. 

With the blessing of my physical therapist I was walking by the first of August mostly without my crutches.  Sean and I had the opportunity to attend the Blinded Veterans Association Convention in Portland, OR at the end of August.  Between that and the start of the school year I was determined to leave the crutches behind.  Everyone pitched in to help me get the classroom ready before we left on our trip. 

The Windy City

The Windy City did not disappoint.  Temps were in the 30s and 40s with winds gusting to 30 mph.  Not the best touring weather, and definately made us cross outdoor activities off the list!

The girls and I took a trip to Chicago to visit Sean over Easter vacation. It was a grueling 12 hour drive (have I mentioned how much I despise driving now?) E kept me company, K managed to sleep almost the entire drive.

When we arrived in Chicago it was well after dark. The traffic and tollways were confusing. It seemed to me that only every third or fourth street actually had a street sign. I found the hotel easily, but it took well over an hour to figure out how to get to the hospital to pick up Sean. First, I went the wrong way. Then we turned around and tried to take the Mapquest shortcut. When that didn't work we started over and took what seemed to be the most confusing route, but it actually got us to the hospital. Turns out we had been right where we needed to be on the second attempt, but the neighborhood was so scary that I didn't drive down the road. There is not a single VA hospital sign until you reach the gates.

After my driving fiascos, we tried to take the metro as much as possible the remainder of the weekend, but there were a few places where Sean insisted I drive instead, mainly the Bulls and White Sox games. YIKES!! Traffic was awful! I didn 't know where I was or where I was going. I literally cried and drove down the freeway. And I had the blind man next to me trying to give me directions.

Sean and girls at Shedd Aquarium

Girls at the White Sox game

Sean and Melissa at Lake Michigan

With the Luvabulls before the Bulls game

We visited the Field Museum, Shedd Aquarium, Navy Pier, went to a Bulls game and a White Sox game. 
All in all it was a great trip and we were so happy to see him. And then it was Sunday and we had to drop Sean off at the hospital. It broke my heart to leave again and of course I cried. It was reassuring that he was enjoying his stay and he was feeling more independent, but I was still leaving him behind.

Central Blind Rehabilitation Center

On February 27, 2009 Sean left for the Hines VA Blind Center.  Our oldest daughter travelled to the Sioux Falls airport with us to send him off.  It was a bittersweet day.  I was relieved that he would finally be getting some assistance, since we clearly did not know how to manage vision loss at home, but once again I was sending my husband away.  It was extremely difficult to drive out of the airport parking lot knowing I might not see him for another two months. 

Sean received training in daily living skills for individuals with low vision: cooking, cleaning, household maintenance, braille, orientation and mobility, typing, assistive devices (gadgets) for the blind, cane training, organization, and computer skills.

The computer he uses is awesome!  It has program called Zoomtext which allows him to enlarge the screen as much as he needs to read.  He can scan documents to read on his computer.  The program can also read material to him.  He brought home different magnifiers and pocket magnifiers.  He has a gadget that can scan his prescription labels and tell him what medication is in the bottle.  There is another that can scan bar codes at the grocery store and one that tells the color of clothing.  He has an Optron which projects an item/image on the table onto a larger viewing screen so he can read material or work on models and other projects. 

Sean was seen by Dr. D, a neuro opthamologist, who measured his vision at count fingers at six inches.  Given the health of his eyes and lack of evidence of optic neuritis, she determined the cause was most likely trauma to the brain due to the blast injury.  She said his vision was not likely to improve. 

He was given glasses with tinted lenses to help with photophobia, and prisms were put in  his lenses to help minimize the double vision. 

While in Chicago Sean had the opportunity to attend many Chicago Bulls games, Blackhawks hockey games, and a couple White Sox games.  The clinic patients attended a golf tournament where they were able to golf with a guide as their "eyes."

On May 13th I flew to Chicago for the family education portion of his rehabilitation.  I was given two days with the instructors to experience what Sean had been doing for the past two and a half months.  I received some orientation and mobiltiy training along with some instruction on guiding a blind person.  It's an amazing program and it was fantastic to meet the caring staff.  I also got to meet some of the patients who were all very positive about their experiences. 

I think the biggest change in Sean was his new found independence.  He had become reliant on me for everything and this trip forced him to be on his own and learn that he could take care of himself.  The other big change was that by learning to slow down and use the blind cane he no longer needed to use the walker.  He was still dizzy and off-balance, but he had learned to feel his body and be more aware of how he was moving.  He was glad to be rid of the rollator!

Sean loved his experieces at Hines.  It opened new doors for him and brought him connections he never thought possible.  Many of the activities and trips he participates in today would not have been possible without his making connections there.

Downhill

January and February 2009 were hard months.  The doctors ordered another round of IV steriods which did not make any improvement in Sean's vision.  He had several eye exams and still his vision remained between 20/400 and 20/800.  Sean was now legally blind. He still had some usable vision at close range and could see shapes and shadows.  The decision was made to send Sean  to the Central Blind Rehabilitation Center at the Hines VA in Chicago, IL for training and rehabilitation at the end of February.

During this time, perhaps due to the increased stress from losing his vision, Sean had several disturbing episodes.  One weekend we drove to Jamestown, ND to drop our youngest daughter off to visit her family.  The drive is a little over three hours round trip.  As we neared home, Sean sat up in his seat and asked, "What just happened?  Where was I?"  I reminded him that we had just dropped K off with her grandma and were now almost home.  No matter how many times we went over it, Sean did not remember any of the trip.  The next day, he asked where K was, and still did not remember the drive to Jamestown.

Another day he was getting ready for an appointment and met me at the front door saying, "Ready to go."  He was wearing a pair of shorts, sandals, and no shirt.  It was well below 0 and snowing outside. 

One night as we were getting into bed, Sean lost his balance and fell into the bedroom window, breaking the inner panel of glass.   Fortunately, the curtain caught in the window sill and prevented him from falling all the way through the outer pane and to the ground outside. 

PT issued him a rollator walker to aid in preventing his falls.  The SD sidewalks and roads were icy and snowpacked and he was having many more falls and difficulty getting around.  It was quite an insult to his pride to be using a walker, but it did make him feel more safe and steady. 

At the doctor's office while making an appointment, Sean said he needed to call the fire department.  When I asked him why, he replied, "I'll need to get the day off work."  I had to tell him that he no longer worked at the fire department.  He asked, "What happened?  Did I get fired?  What do I do now?"  It took about half an hour to bring him back to the reality of where we were and for him to remember that he medically retired the previous summer.  This is not an isolated incident.  Over the last year there have been three or four times that Sean has mentioned going to work, checking his schedule, etc.  It is always heartbreaking for him to hear that he is no longer working at the fire department. 

A scarf on a chair in a waiting room set Sean into a trembling fear and mumbling incoherently.  I had to remove the scarf to the nurses desk, and we still had to leave the waiting room to another area.  He obsessed over the scarf most of the day.

I was relieved that he would be getting some inpatient care at the Hines VA.

I'm Dreaming of a Normal Christmas. . .

. . . one where my husband isn't out of the country, isn't out of the state on med hold, where we are all together at home and celebrating.

But wait, there's a catch.

On December 18, 2008, Sean came to my classroom in a panic.  He had suddenly lost his vision and could only see colors and shapes around him.  There was a stabbing pain in his eyes that he described as an ice pick jabbing them.  I made arrangements to leave work and we went to the ER. 

Sean had an MRI and a CT scan.  They gave him several shots of pain medication before the pain finally backed off, though it never fully went away. 

God bless the ER doctors, but let me just say that I wish we had a VA facility nearby.  The doctors we saw wanted to "fix" the problem. We spent a lengthy time going over the history and where this all started.  They did not have access to his medical records, so they were doing the best they could.  After five hours I finally convinced them to send us home so we could consult with Dr. H and the neurologist at the VA after they had a chance to see the test results in the morning. 

The VA doctors could find no evidence from the tests to explain what was going on.  We were referred to an optometrist in town the next day.  Following the exam he said he could find nothing wrong with the health of the eyes despite Sean's vision now being 20/800.  We were advised to treat the pain as best we could and follow up with the doctors at the VA.

Dr. H made an appointment with an opthamologist in Sioux Falls for the end of the month.  However, Sean's eyes had other plans.  On December 22nd we returned to the ER just before bedtime.  The stabbing pain was back with a vengeance.  This time they did a CT scan and a spinal tap, both with unremarkable results.  We spent another five hours in the ER before returning home with Sean again having received several shots of pain medication. 

After a very late night I dragged myself to work in the morning and desperately needed a caffeine IV.  Dr. H called and said he wanted to see us in Sioux Falls the following day (Christmas Eve!) and had also arranged the opthamology appoinment with Dr. W and a neurology exam with Dr. F.  So once school was out for the day I packed us an overnight bag and we said goodbye to the kids, reassuring them we would be home in plenty of time to spend with them on Christmas Eve. 

There were several conflicting ideas involved with seeing so many doctors in one day.  Dr. F said it was optic neuritis, and ordered a dose of IV steroids to calm the inflamation of the optic nerve.  Dr. W and Dr. H wanted an MRI to be sure.  Dr. F said he is the neurologist, he doesn't need an MRI to know what it is.  Dr. H ordered it anyway.  Dr. H also thought Sean should be admitted to the hospital to receive steroid treatment over several days.  Dr. F said it could be done in a couple hours.

I had called my dad to let them know we weren't sure if we would make it home for Christmas, or if we would be staying.  The kids were calling all day to see when we would be home, what we were making for dinner, were we going to open any presents.  I never told them that we might not make it back in time.  I didn't want to disappoint them, or myself.

Finally, we had an order for the MRI.  It took almost two hours at the local hospital to finish.  When we returned to the VA hospital, there was almost no one left.  All of our doctors had left to start the holiday.  There was an order at the ER for Sean to have IV steriods before he went home and we were to come back the following week to see the doctors. 

We finally got on the road late that evening and arrived home around 10:30 PM.  The kids had fed themselves.  We let them open the Wii we had purchased for a family gift and everyone went to bed, cranky and tired.  It was hardly the Christmas we had been wishing for. 

A New Way of Life

Sean was not adjusting well to being unemployed.  He was more moody and irritable than before.  His pain was worse and he spent his days laying on the couch when he didn't have appointments.  Since I was working full-time, he had to use the city shuttle service to get to and from most of his appointments in town.  I would still take off work to attend his counseling appointments and when he needed to travel to Sioux Falls. 

When I was at work Sean would call me four or five times a day in addition to seeing me when I came home at lunch.  He would call to check in, to ask where his wallet was, to see when I would be home.  It was difficult to manage my first grade classroom with so many interruptions.  I decided it was time to find him a job.  While it wasn't reasonable to expect Sean to go back to work, I knew he needed a purpose.  With the permission of my principal I started to bring Sean to the school in the afternoons.  He helped with clerical work and projects.  The kindergarten teachers quickly put him to work several times a week helping with centers in their classrooms.  There were two autistic boys in those classes, and Sean was able to help keep them on task.  It worked wonderfully.  Sean  had a reason to get out of the house every day, and I could concentrate on my work and not worry so much about him being home alone.

I was constantly worried about Sean falling and hurting himself.  I was afraid he would get confused and leave the house.  He would start to cook and forget what he was doing and leave the stove on.  Knowing he was safe was a big relief. 

Yet it was awkward having him at work.  When I went into the lounge at recess, he was there, after work he was in my room.  At the end of the day we went home and he was there.  I was used to him working 24 hour shifts, or being out of the country.  It was a big adjustment for me to have him around all the time.  Sometimes it felt like everyone was asking about him and wanting to know how he was doing. . . and we were together so much. . . .and there was no "me."

The role of caregiver superseded the role of partner.  We were no longer a couple, but I felt like I was leading him here and there and taking him with me where ever I went.  When I wasn't taking care of Sean I was taking care of the kids or attending their activities.  Three kids in high school brings a lot of extra duties.  And when I was not doing that, I was working or planning for school, or doing laundry, cleaning, buying groceries, taking someone to the doctor.

Yet we didn't have it so bad.  There were others much less fortunate coming out of this war.  There were others who would never come home.

Notes from the Minneapolis VA

In an effort to save myself some time I have copied and pasted notes written to our families while Sean was in the Minneapolis VA in November 2008. 

Sunday:  Sean and I are leaving this morning for a trip to the Minneapolis VA hospital where he will be monitored for a week to measure possible seizure activity.  He has weird episodes where he is "zoned out" and then really confused.  These episodes might be absence seizures.  He will be hooked to monitors and videoed for a week to record his brain activity.

Tuesday:  Sean is confined to the hospital with 23 electrodes glued to his head and under 24 hour video/audio monitoring.  He's a good patient and had several episodes the first morning to show that neurology staff what they are dealing with!  He can move from the bed, to the chair, and back.  He was sleep deprived yesterday, allowed two 1-hour naps during a 15 hour period.  Not sure if they will continue this.  He is in very good spirits.  The neurology team keeps coming in to do the pin-poke test on his arms and legs (to gauge his decreased sensation in the extremities) and nodding their heads in general confusion.  He is a mystery, it seems.

I feel so bad that Sean is stuck in that dingy hospital room with nothing to do but watch crappy cable.  He will be sleep-deprived again tonight, so he can sleep for @ 2 hours between midnight and 2 PM tomorrow.  He is off all meds, including those for abdominal pain and headache.  He was seen by GI due to the abdominal pain (the pain he always has), so he can't eat or drink tonight and will have a CT scan in the morning.  Can't quite figure that out since they told him leaving the room would ruin the brain testing, but they are taking him out anyway.  But through it all, he remains happy and friendly.
Wednesday:  Today did not start out well.  Sean had an episode that involved the staring, then he felt sick and finally he was semi-alert and aware, but was struggling to talk and sounded like a stroke patient.  This lasted for about 45 minutes and then happened again later in the morning.  The rest of the day was uneventful.  I'm glad they are getting all this on tape, and mostly I'm glad that someone besides myself and the kids is finally witnessing these events!

I have to laugh, though.  The doctors keep poking him with the pin, and pushing or pulling on his arms and legs, or shining the flashlight in his eyes and saying "Hmm..."  Is that a good sign?  Several times today, "Hmm..."
 
Thursday:  No significant episodes today (couple very brief almost-episodes that went away almost as fast as they started), but a rough day none-the-less  When I got to the hospital I said, "Hi, how are you?"  Sean replied, "No sleep, no food, no coffee, no meds."
They did disconnect him for an hour for the CT scan of the abdomen.  I guess it doesn't really ruin the brain testing, just pisses off the lady who is in charge of hooking/unhooking him from the monitor.  Sean had an allergic reaction to the contrast injection so he had to be given some Benadryl...during his period of sleep deprivation.  "Here, take this sedative...now be sure to stay awake!"
When he was finally able to go to sleep, he couldn't do anything more than doze as his head and stomach were causing him great pain.  This afternoon he was extremely nauseated and dizzy.  I hope he will be able to get some sleep tonight.
They will release him sometime tomorrow.  Hopefully the doctors will be able to tell us something, but realistically they will probably need to write reports and send them to the neurologist in Sioux Falls who will then schedule a follow-up with us (that could take at least a month).  Not sure if they will make any recommendations on the medications, but since they took him off cold turkey and he will jump start again this weekend I don't think that can all be good for his body.

Friday:  Scratching heads here....


The doctors discussed the week's results with us before discharging Sean. Apparently the episodes Sean has been having are not the typical type of seizures that send out measurable electrical impulses in the brain.  Sean's episodes are not sending out those electrical impulses.  There was no questionable acitivity measured this week.  None.  This does not mean he has no brain activity (he doesn't think this joke is funny...) just that during all the spells, including the one where he couldn't speak, there was no unusual activity in his brain.
The good news is that since those impulses are not going out, they are also not doing damage to the brain. More good news (and we've heard this phrase before) is that it may or may not improve over time.
So where does that leave us?  These are not seizures, not epileptic, not neurological in nature. 
They recommended Sean go off all meds and see what happens...we have chosen to see our regular VA neurologist and polytrauma physician.  They also made a firm recommendation that Sean does not drive until he is free of these episodes (6 months MN law, 12 months SD law) and can safely drive without vacant spells and the ensuing confusion. I am backing this one 100%.   The kids and I have been trying to convince him not to drive for several months.  He does not appear to see things around him, and drives recklessly.

So in the end it is good news, yet we don't know what to do with it.

Ch-Ch-Ch-Changes

Over the next few months there was a gradual deterioration of Sean's condition.  He was falling frequently.  His sense of smell was gone.  There were slight tremors in his hands.  When he was falling asleep, his arms and legs would jerk and twitch, sometimes continuing throughout the night. 

Sean's vision continued to worsen.  He had almost no night vision and was extremely sensitive to bright lights.  He had nystagmus, an involuntary rhythmic shaking or wobbling of the eyes.  He had double vision starting at 60 degrees peripherally.

We travelled to Yankton, SD to the American Pain Relief Institute where Sean received radio frequency treatment for his chronic neck and headache.  While he had some relief intitially, the effects were short-lived.

Sean was losing sensation in his hands and feet. While working on the house, he cut his thumb to the bone with a table saw.  He did not feel the cut, but stopped when he saw blood.  The ER doctor was able to put in eight stitches without any anesthetic.  

An electomyography (EMG) test was done to measure how the nerves in his arms and legs were working.  The test determined that the nerves were working properly.  The lack of sensation was caused by either the message not travelling to the brain from the nerves, or the brain misinterpreting the message.

Despite the diagnoses and the extensive research I had done, I was still confused by it all.  These changes in my husband were frustrating for all of us.  He would ask, "Why did this happen?"  "Why can't I do things like I used to?"  I felt lost with all the changes.  I didn't know how to help him.  I didn't know how to explain it all to our children.  I didn't know how to deal with the changes myself.  Although we had been dealing with changes in one form or another for over two years, this was new and frightening territory.