Valuable Lessons Learned

As I sit here I just finished watching CNN with the deal being struck on the both the Debt Ceiling and the Government Shutdown and thinking there are some valuable lessons to be learned from the stress of the last 16 days.

Lesson #1 – Be Cautious

        Be cautious when sharing information, there are so many politically biased news sources out on the internet it is hard to discern if the sources are creditable.

        Be cautious when depending on specific things, especially when it comes from the government.

       Be cautious when spending, try to build a little reserve fund since we never know when all you know what will break loose.

Lesson #2 – Shop Smart

It never hurts to have too much in the pantry, noodles, vegetables, tuna, canned and boxed goods. They will last longer than fresh ingredients.

It never hurts to buy a bit extra of ground beef, chicken, or turkey. These can help stretch a tight budget.

Think twice before making a purchase on a credit card. Do you really need it or is it a WANT.

Lesson #3 – Don’t Panic

Never panic over something you have no control over, waste of energy.

Be proactive and think ahead.

Lesson #4 – Talk to Others in the Same Situation

When working together we can accomplish more than by trying to do it all ourselves.

Ask you friends how they would prepare. Share tips, tricks, and cheap meal ideas.

With all of that being said I now get to figure out how much ground beef my family is willing to eat before they go on a hunger strike.

Submitted By Pam B.

Blind Etiquette and Guide Dog Etiquette

Yesterday was White Cane Safety Day!

On the 15th of October, 1964 President Lyndon B. Johnson made a proclamation designating the day as White Cane Safety Day to recognize blind and visually impaired individuals and their achievements.  The white cane serves as a symbol of independence and mobility.  The long, straight cane is a valuable tool used to detect objects in the path, allowing the user to navigate with confidence and safety.  A white cane is an international symbol to alert others of the user’s visual impairment.

My husband is legally blind.  He lost the majority of his vision in 2008 due to a traumatic brain injury (TBI) sustained in 2006.  In fact, nearly 74% of TBI patients experience visual complaints ranging from light sensitivity and double vision to vision-threatening complications and blindness.  Visual pathways in the brain are very complex and aren't completely understood yet, making diagnosis and treatment difficult, especially when combined with TBI.

During blind rehabilitation training, my husband learned to use a long white cane as part of his orientation and mobility training.  He received training on using a GPS device which allows him to maneuver about the neighborhood without losing his bearings.  Last fall, we welcomed a guide dog into our home.  All of these mobility devices (and many more) have increased his level of independence and feelings of confidence.
I have included etiquette guidelines below, but will pause to add a personal commentary.  Please use courtesy and caution when you see a person using a white cane or with a guide dog.  While most people we encounter are respectful and understanding, numerous times we encounter someone who tries to cut him off or quickly jump in front of him.  This is not only rude, it is not safe for either party.  It’s important to remember that many individuals using a mobility device, like my husband, have some usable vision…which means he may be able to see you rushing to get past his cane.  Be aware of your surroundings and extend a courtesy to those who use a mobility device.

Blind Etiquette Tips from the Blinded Veterans Association

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.

bva.org http://bva.org/support/whattodo.html

Guide Dog Etiquette from Guide Dogs for the Blind

As tempting as it may be to pet a Guide Dog, remember that this dog is responsible for leading someone who cannot see. The dog should never be distracted from that duty. A person's safety may depend on their dog's alertness and concentration.

It is okay to ask someone if you may pet their guide. Many people enjoy introducing their dogs when they have the time. The dog's primary responsibility is to its blind partner and it is important that the dog not become solicitous.

A Guide Dog should never be offered food or other distracting treats. The dogs are fed on a schedule and follow a specific diet in order to keep them in optimum condition. Even slight deviations from their routine can disrupt their regular eating and relieving schedules and seriously inconvenience their handlers. Guide Dogs are trained to resist offers of food so they will be able to visit restaurants without begging. Feeding treats to a Guide Dog weakens this training.

Although Guide Dogs cannot read traffic signals, they are responsible for helping their handlers safely cross a street. Calling out to a Guide Dog or intentionally obstructing its path can be dangerous for the team as it could break the dog's concentration on its work.

Listening for traffic flow has become harder for Guide Dog handlers due to quieter car engines and the increasing number of cars on the road. Please don't honk your horn or call out from your car to signal when it is safe to cross.  This can be distracting and confusing. Be especially careful of pedestrians in crosswalks when making right-hand turns at red lights.

It's not all work and no play for a Guide Dog. When they are not in harness, they are treated in much the same way as pets. However, for their safety they are only allowed to play with specific toys. Please don't offer them toys without first asking their handler's permission.

In some situations, working with a Guide Dog may not be appropriate. Instead, the handler may prefer to take your arm just above the elbow and allow their dog to heel. Others will prefer to have their dog follow you. In this case, be sure to talk to the handler and not the dog when giving directions for turns.

A Guide Dog can make mistakes and will need reminders to maintain its training. Correcting a mistake usually involves a time-out or leash action. When the dog regains focus and correctly follows a cue, he or she is frequently praised and rewarded with a kibble. Guide Dog handlers have been taught appropriate management methods to use with their dogs.

Access laws, including the United States' Americans with Disabilities Act and Canada's Blind Persons' Rights Act, permit people who are blind to be accompanied by their guide dogs anywhere the general public is allowed, including taxis and buses, restaurants, theaters, stores, schools, hotels, apartment and office buildings.

Before asking a question of a person handling a dog, allow them to complete the task at hand.

Remain calm in your approach and mannerisms.

Never tease a dog.

guidedogs.com http://www.guidedogs.com/site/PageServer?pagename=resources_access_meetguide

Submitted By: Melissa

Our Story: Wouldn't Be Pretty...

While I am extremely thankful that the VA recognizes the need for to provide services to caregivers, I regret that my experience with the Caregiver Program process has not been a pleasant one. Our application process began in January of 2012 and at first appeared that it would go smoothly. Valerie Silvers is the CSC that we dealt with at the Denver VA. Shortly after submitting the form I was contacted by Ms. Silvers to discuss the care needed for my husband by telephone interview. I was in no way informed that this would be the only time I would be able to contribute information on what duties I perform in caretaking for my husband.

We were scheduled for an appointment with a psychologist to do the exam for the program.  This clinician was not one my husband had seen prior to this exam. I was not allowed to be present during this examination and was actually quite rudely informed “you will get your chance later.” My exclusion from the exam came in spite of pleading from my husband that I go to all his appointments with him as he does not function well in a medical environment without me. 

During the exam, my husband was extremely anxious and reported to me that he “just wanted to get out of there as soon as possible.” He also felt the line of questioning implied that the clinician performing his exam had not even looked at his medical records pertaining to his PTSD and TBI.

I will note that this has been the only exam I have ever been excluded from, including all his exams for his Compensation and Pension. I have also been able to attend all his counseling sessions with him, without problem, and have been made to feel more than welcome. There is documentation in his medical record that actually pertains to me being a nurse and that is the only reason one of his psychiatrists increased his medication levels-because she knew I was managing his medications at home.

Shortly after this appointment we also had an appointment with a TBI doctor at the VA and mentioned the caregiver program. We were very bluntly told by the physician that “you don’t want to be in that program anyway. It’s only going to last for 5 years and people are just going to be dependent upon that money”. At this point I was at a loss for words and she continued with “that program is only for people who can’t wipe their own noses or butts.”  As a clinician, I cannot even begin to explain how horrified and appalled I was that she would actually say these things to a patient. I attempted to contact the patient advocate regarding this issue but was never able to meet with anyone and could never reach a live person on the phone.

Following these appointments I received a call from Ms. Silvers stating that we were denied the program. I explained my disagreement with the decision and she advised me to appeal through the patient advocate office. I called the office and never heard anything. Approximately a month later I heard from Ms. Silvers again and she asked if I had started the appeal process. I explained that I had never heard back from the patient advocate office. Upon further review, it was found that the patient advocate office does not handle appeals, but rather the Chief of Social Work. Once directed to the right place, we started the appeal process with Joanna Kadis.

I submitted a lengthily appeal letter to Ms. Kadis to present to the appeal board. I also asked that documentation from his psychologist examination during his Compensation and Pension exam be reviewed as the documentation was drastically different that the original psychologist evaluation. Dr. Richards performed the exam for his PTSD during his C and P exam and stated specifically that if the review board had questions regarding his need for a caregiver that she could be called.

After a 60 day review process we were informed that we were once again denied for the caregiver program. This came as quite a surprise since my husband’s PTSD alone was rated 100% by the VA and according to the board he meets special criteria for homebound compensation. I do not understand how there are two such drastically different opinions regarding his needs for a caregiver. When speaking with Ms. Kadis I could not get a definitive answer as to why there were two different conclusions. I was informed that the appeals review board had thoroughly looked at our case. When asked who was on the board I was informed that the Chief of Mental health and a podiatrist reviewed the information and it was then presented to the Chief of Staff. I will state that I have issues with a podiatrist being a deciding factor in a mental health case.

I asked about a second opinion and was informed that the review board “was the second opinion”. I informed Ms. Kadis that I disagreed because for a true second opinion to be clinically appropriate and accurate, one must actually see the patient. No one on the review board actually evaluated my husband. The basis of the review was on the original psychologist’s documentation. I have personally reviewed her documentation in my husband’s medical record and completely disagree with it on a professional level. It also does not correlate with any of the documentation by the psychologist who performed my husband’s exam for his PTSD during the C and P exam, nor with any of the documentation from the psychiatrist that had been seeing him on a regular basis. I find it extremely odd that the one exam I was forbidden to be a part of is the one exam that is being used to deny us from the program and the results of it are so different from all of the other evaluations my husband has had.

At this point I was advised to do a second appeal. I sent the information to a Ms. Mary Lee at the VISN level. After many unanswered phone calls and emails to even receive verification that my appeal letter was received, we received a denial that stated it was final and we had exhausted all appeals.

To say that this process was frustrating does not even begin to describe the emotional turmoil of this ordeal. Also, to have repeatedly stated my professional disagreements with the exam finding and to have them ignored is alarming. Even more alarming is that in the appeals process the continued denials were based on documentation that I had already stated in writing I disagreed with…a true appeal or second opinion should have meant a re-evaluation by the healthcare provider handling the appeal. To base a decision on someone else’s documentation and never lay one’s own eyes on the patient is extremely poor practice and should NEVER be done. It is worth noting that since being denied the program and being told that he didn’t need a caregiver (or more accurately “that while it wouldn't be pretty, we feel that he could function without you”) he has needed to go back to inpatient treatment for his PTSD for the third time, has started and stopped school an additional two times and has started and stopped a part time job twice. His needs have not changed and I continue to provide care for him daily. He continues to attest to the fact that he “would not be able to make it without me” and that “the only reason I am doing as well as I am is because you are here to help me.”

To learn more about the State of Heroes and Families project, please visit our main site or visit any of the following direct project links -

Why This Started: www.familyofavet.com/state_of_veterans_families-why.html

The Statistics: www.familyofavet.com/state_of_veterans_families-statistics.html

Our Stories: www.familyofavet.com/state_of_veterans_families-stories.html

What We Hope For: www.familyofavet.com/state_of_veterans_families-hopes.html

FAQ About the Project: www.familyofavet.com/state_of_veterans_families-faq.html

Our Story: Need Communication and Understanding

I am the wife of an OIF/OEF Army Veteran. We have had numerous experiences within our VA system, some good and others not so much. We regularly go to the VA Outpatient Center in Jacksonville, FL but on occasion have to go down to the VA Hospital in Gainesville, FL.  I suppose I should begin with the negatives and get them out of the way.

We have had numerous issues with different doctors in both locations. My husband suffers from PTSD, mTBI, migraines and chronic back pain that causes spasms throughout his body and requires him to use a cane. In the five years we have been using the Jacksonville VA we have had around seven or eight Primary doctors and the changes never come with any warning. When you have a patient with PTSD, sudden change with no advance notice is never a good thing. It causes paranoia, discomfort, and agitation. Not to mention it then takes a longer period of time to build trust with the veteran, established trust necessary to develop and open and outright relationship. 

My husband was hospitalized at a local non-VA hospital a few years ago for extreme pain in his back and legs. He experienced pain he described as feeling like he was being electrocuted. This pain caused him to have full body spasms (looked like he was seizing) and then he would pass out. He had been experiencing these issues for quite some time, and while the VA was aware of it, nothing was done to find the cause. We spent almost a week at the hospital where they ran numerous tests, including a spinal tap, and informed us that he had a larger than normal amount of fluid on his brain. They were concerned that he may have the beginnings of hydrocephalus and he needed to be closely monitored by neurology. We then learned that the VA wanted him to be transferred to the Gainesville VA hospital or the VA would not pay for his care.  Since he had no other health coverage we didn't have a choice. We weren't too upset at the time because we understood that a medical body would rather use its own facility and staff. 

However, my husband was there less than 24 hours before I received a call that he was being released and I could pick him up at 9 pm. The VA doctors had done an MRI and the neurologist tapped his leg with a tuning fork. The doctors decided it was not hydrocephalus and sent him home. When we spoke to the primary physician about being seen by neurology regularly, as recommended by the civilian hospital, we were told it was unnecessary as neurology had already seen him that year. 

These events occurred in Oct/Nov 2010 and my husband has not been examined by a neurologist since. It is now Oct 2013. Our requests for an appointment are never granted.

We also have had issues with the Caregiver Program. I have cared for my husband since we were married in 2008. I am with him 24/7, wherever he is, I am. As a result of his PTSD he has very poor short term memory. Most days he couldn't tell you at dinner time what he ate for breakfast. Many doctors ask him how often his pain occurs or recall the last time he has passed out (still unsure what causes this as doctors won't investigate it) and he is incorrect with his answer. He tells the doctors that it hasn't occurred in a couple weeks when he experienced three episodes that week alone. When I try to correct the response so the doctor has accurate information I am often told not to answer for him or that they can only use information from the patient. It is unfair to expect someone with memory impairment to recall those details. My husband is fully aware of what happens around him but he has poor time judgment. How can they effectively address his problems when they knowingly use the wrong information?

There are numerous issues regarding his pain medications. My husband has a prescription for narcotic pain medication that he is told to take as he needs it and the prescription is written to take twice daily as needed for pain. He has a relatively high pain tolerance and will take his pain pills only when he absolutely can't handle his pain as he fears becoming dependent upon narcotics. Most doctors would prefer you take them this way but when the VA drug test he takes regularly did not show his pain medication in his system his primary doctor threatened to take his benefits away since, in his opinion, my husband was not as bad off as he claimed. I could not believe it when the doctor went on to tell my husband he needs to take these pills twice a day, regardless of whether he is in pain or not, or he will lose his benefits. We requested pain management from this same doctor and were informed that narcotics ARE his pain management. When my husband complained months later that the pills were no longer as effective (after following doctor’s orders and taking twice daily) he was treated as though he was fishing for more pills instead of legitimately needing a higher strength. If you expect someone to take a narcotic on a regular basis there will come a time when that person's tolerance increases resulting in a need to increase; it does not make that person a recreational user.

Another issue with pain medication is when we receive the pills through the mail the counts are always short. I immediately open the bottles when they arrive and count for accuracy.  EVERY month the bottles range from 3 to 8 pills short of the prescribed number. We have notified the pharmacy and the response is a shortage is not possible because the pills are counted out by a machine--there is nothing that can be done. 

Our biggest problem with our VA is communication about appointments. We do not always receive notifications about upcoming appointments. I cannot count the number of times that we have received a letter alerting us that we missed an appointment on the same day I receive the letter informing us about that same appointment.

Another scheduling issue is when we have to cancel appointments. There are mornings that my husband is not in a good place. He is either passing out, sick, highly agitated, or in too much pain to move. On these days there is no way I can get him into the car and into the hospital and I have no choice but to cancel or request to reschedule an appointment. I do my best to make sure these appointments are canceled as early as possible. Without fail, within a few days we will receive a letter stating that since we missed the appointment and is considered a no show. His benefits have been threatened over this as well as my caregiver stipend.  The nurse who did my last home visit said it could be taken away since it is my job to make sure he attends appointments.  I ALWAYS call as soon as I THINK there might be an issue. I don't let him miss appointments simply because he doesn't feel like going or would rather be going somewhere else. When we cancel it is unavoidable. The threat of losing benefits because he couldn’t walk three feet, let alone the distance to the car and into the VA, does absolutely NOTHING to ease the stress in already extremely stressful lives. I don't feel it’s fair to threaten our income and medical care when the reasons are misunderstood. 

We have only had a couple positive experiences in our time with the VA and ALL of them are situations specific to the people we worked with rather than the institution. The most constant and positive experience we have ever had is with my husband’s first case manager. She has always been, and still is, amazing. Her name is Linda and she has always gone out of her way to help us, even after she moved to another team. My husband adores her and she truly CARES. She doesn't mind if we stop by after an appointment to discuss a problem and she does everything in her power to assist us or, if she can’t assist, tell us how to get what we need. She has truly been an amazing addition to our support team and on more than one occasion has helped keep my husband calm when his stress got the better of him due to an issue within the VA system.

The second person who has shown us that there are actually people in the VA system who care is my husband’s Federal Recovery Coordinator. He is awesome and always makes time when we have questions. He never leaves us in the dark for long when we are looking for answers, he cares enough to remember situations we are dealing with, and will do anything he can to assist us.

Lastly, and our BEST experience within the VA system, has been the PREP Program at the VA Hospital in Tampa, FL. The entire staff there was amazing and supportive. My husband spent three weeks in the program and during that time more was accomplished than our local VA had done in three years. The staff stayed fully involved in my husband's care and the doctors were great about calling me when I requested information and keeping me updated on his test results, their plan of action, and his progress. When I drove back to Tampa to pick him up, each of the doctors took the time to sit down with me personally and lay out everything they had done and discovered and gave me what their recommendations. As a caregiver, having someone within the VA system sit down and talk with me about the things I needed to know (even though my husband had already been told) showed me that they truly valued the caregiver's role in the health and continuing treatment of the Veteran.

To learn more about the State of Heroes and Families project, please visit our main site or visit any of the following direct project links -

Why This Started: www.familyofavet.com/state_of_veterans_families-why.html

The Statistics: www.familyofavet.com/state_of_veterans_families-statistics.html

Our Stories: www.familyofavet.com/state_of_veterans_families-stories.html

What We Hope For: www.familyofavet.com/state_of_veterans_families-hopes.html

FAQ About the Project: www.familyofavet.com/state_of_veterans_families-faq.html

Our Story: What Would You Do?

My husband is an OIF vet who was injured in Iraq in 2005-2006. He suffered from multiple traumas to the head in nine different IED explosions, and lost consciousness at least two times during them. He was never properly treated for his injuries while in Iraq and none of his medical records from any of his deployments are in his medical files. He is currently rated 100% permanent and total with traumatic brain injury, severe PTSD, non-epileptic seizures, chronic headaches, and hearing loss.

I am my husband’s full time caregiver under the new Post 9/11 Caregiver Act. I get paid for 40 hours of care per week (tier 3, highest possible tier) provided to my husband.  When I was accepted into this program we did not have any confirmation for his symptoms/disabilities outside of PTSD rated at 50%, yet qualified for the stipend at the highest tier. He now has new ratings on top of the original PTSD (100% P &T, traumatic brain injury, severe PTSD, non-epileptic seizures, chronic headaches, and hearing loss).  Last week my husband was informed by a certified letter that my tier will drop to tier 2 (25 hours of care per week), with no explanation regarding the change.

My husband has tremors, and balance problems which means he requires assistance at times not just reminding him to take a shower, but really hands on help to get in and out of the shower and wash. Our caregiver coordinator offered homecare service to assist me with this, and also to get assistance established for respite care. I asked the PCM to request a consult and he didn’t feel it was necessary.  The CSC also advised me to ask for Life Alert so when my husband would be safe, for example, if he wants to be outside by himself and has a seizure he can press it and call for help afterwards. I have found him several times outside on the ground o on the floor in the past. The doctor also denied this with the statement that he will become dependent on it.

It is difficult to get him to our VA facility in general as it is a 2.5 hour drive and many times he has seizures before or on the way to the hospital. I have asked for referrals to a local therapist, as he can’t have productive therapy or concentrate after those episodes.  The requests have been turned down.

At home he has seizures at least every other day without any additional stress.  We are in the process of changing his medications to see if he can get some relief.  At this point we hope to get him back down to one to two seizures a week.  His records report grand-mal seizures, which we were told verbally cannot be ruled out even though they were not caught on an EEG study. His PCM states that he needs to be supervised at all-times due to his seizures, and we have seen a civilian doctor who feels he needs 24 hour supervision as well, because he could seriously hurt himself when he goes down during a seizure.

He had a long term EEG study at the Houston VA.  The treating neurology team prescribed a wheel chair for him because they witnessed how bad his tremors and his weakness can get. He can be very unstable when walking and is prone to frequent falls. He uses a cane for support due to balance issues.

The PCM requested a grant through the VA to get certain accommodations in our house for his safety. I cannot even find a contractor in our area who is willing to comply with the VA rules and regulations, or who is willing to try to work with them. The stair railings are falling apart and are unsafe due to my husband grabbing them to brace his falls. He ripped out several of the spindles.  Concrete needs to be poured next to the carport to allow wheelchair access.  A ramp is needed to make the access to the house easier. Inside, I have to assist him getting upstairs to the bedroom and bathrooms. He rarely sleeps in our bedroom because it is a hassle to get upstairs.  He usually sleeps on the couch.  The home health nurse who was in our home for my caregiver home visit also told me about the grant and said she will put in a request for a stair lift. 

One doctor is in the process of getting an electric wheelchair due to injuries he sustained during a fall. He has a partially torn ligament in his shoulder which requires surgery to repair.  A cyst will be removed at the same time. 

My husband has constant diarrhea, which causes him to soil himself during a seizure. I usually have to sponge bathe him downstairs until it is ‘fit’ enough to get him upstairs to shower or bathe. Without constant care he could have a seizure and lay in his own filth until he is able to function normally again.  Most of the time he sleeps for days on end, only getting up when I prepare food and force him to eat while trying to keep him awake and not fall asleep over the plate.  I have to wake him to take medications and use the bathroom.

He had a gastroenterology appointment and was diagnosed with GERDS and a constricted esophagus (causes swallowing problems).  They stretched his esophagus and he now has medicine to slow down his metabolism so he has fewer bowel movements. He has already gained some weight back.

On the other side we have days and weeks where he does not sleep at all, staying up for 72 hours on end with 10 to 30 minute naps in between. On those days he wanders around checking things in our home and working himself up to a major paranoia about people wanting to harm him or us, and believes that everyone is against him. He is in super vigilant mode. Sometimes he sees people who passed away (friends he lost, or people he killed). He is playing out scenarios from the past while really believing he is in combat.  I am the one who talks him out of it and keeps him safe, from himself and others.

He has major depression spells where he cries constantly and feels hopeless.  He had been seeing a social worker in the OIF clinic, but she was unable to connect with him. She is no longer seeing him as she did not feel he was making progress.  After confronting him he told me that at every appointment she asked what he had done since his last appointment, he responded nothing, so the discussion stalled.  Due to his mental state and severe PTSD we don’t go on outings.  He feels safe at home, and I cannot force him to go to a baseball game, etc. The highlight of our life consists of a local gas station, and the dollar store which is never crowded.  Occasionally we go to a small local restaurant at a slow time of day where they allow us to sit in the back corner.  He brings his service dog for support. 

He is afraid of the VA, to an extent, and is hesitant to tell his doctors what is really going on. After his last suicide attempt in 2009, he ended up in the mental health ward and not one doctor saw him for three days, until I demanded answers. When I entered the facility I was shocked at the hygiene level. He doesn’t want to end up in there again, and I don’t blame him. He feels hopeless because everywhere we go to get answers gives us a bogus diagnosis or does not have an explanation for his physical problems. It frustrates me that after all this time and having seen numerous doctors within VA we still don’t have answers or understanding.  We’ve been told that everyone with severe PTSD/mTBI should recover.  We are not statistics. I see my husband getting worse and worse.  Yet it can take three to four months just to get an appointment and still we come home without any real help.  When he is really struggling we don’t have months to wait.

He has a diagnosis from a neurologist at the movement disorder clinic in Houston for Tourette syndrome, which should explain those tremors and the swallowing problem.  This neurologist stated he believes that my husband’s onset of Tourette’s is caused by his TBI, and also told us there are no studies supporting his theory.   He also stated that he had diagnosed several veterans with this. I spoke with someone at the Tourette Syndrome Association regarding concerns I am having with this theory. Tourette syndrome usually starts before the age of 21. Nowhere in my husband’s active duty medical files is there any indication he was ever diagnosed or suspected of having any tremors, tics, or Tourette’s. The Tourette Syndrome Association confirmed my suspicions and asked for the location of the diagnosing doctor.

A neurologist has reported vision field deficiency, more pronounced on the right, as well as muscular weakness on both sides (also pronounced on the right).  He has started a new seizure medication.  He had a new sleep study done and the results show that he doesn’t go into REM state during sleep. 

The other neurologist he sees can hardly communicate in English and she has a hard time understanding us.  She seems convinced that certain tests he cannot perform are caused by alcohol abuse, which is not the case. It is a really frustrating situation. Would you want doctors such as these providing your care?

I struggle with all his paperwork 24/7. It took us forever to get his major diagnoses through the system, now it is time to start addressing secondary issues. I manage paperwork for the VA, SSDI, medical files, military files, HRC, and our insurances.  At times I spend hours on the phone waiting for assistance.  I pay our bills, take care of our child, do the shopping, cook, do home repair, take care of the lawn, clean, and wash clothes.  On top of that, I remind him and assist him with all his ADLs such as reminding him to take medication, reminding him to shower and brush his teeth.  I also shave his head (so he doesn’t need to comb it), shave his beard (because he shakes too much), and lay out clothes for him and help him get dressed.  He uses special cups to drink so he won’t spill due to tremors. I provide hands-on assistance with showers and baths, going up and down stairs, pushing the wheelchair, taking care of the service dog, taking him to and from appointments, taking notes, and encouraging him to have a relationship with his son.  I am there to calm him down and make sure he doesn’t harm himself. 

There is never a dull moment in this house, where I can find some rest.  I am always on alert.  When I have to leave the house for longer than an hour, I make sure that someone will check in on him or stays with him, depending on how he is that day. I frequently have to cancel important appointments for my son or myself due to his state of mind and his physical challenges. 

I gave up my well-paid position in the civilian world where I made a good salary and had a regular schedule.  Now I work around the clock with no normal routine, no regular sleep, and no end in sight.  If he is up all night, so am I.  He might be able to sleep the following day, but I still have commitments and a child to look after.  If I returned to work my biggest fears would be him committing suicide, harming someone else, or hurting himself during a seizure or fall.

I was diagnosed with Alopecia due to stress—there are bald spots on both sides of my head.  I recently had shingles, also caused by a high stress level.  However, as a caregiver I don’t have time to be sick or fully recover. 

I have now been informed by my Caregiver Support Coordinator that my tier will be reduced from tier 3 (40 hours per week) to tier 2 (25 hours per week).  I ask you, would you be willing to take my place for that?  I love my husband and no matter what is decided I will try my very best to take care of him and make sure he will be safe!

To learn more about the State of Heroes and Families project, please visit our main site or visit any of the following direct project links -

Why This Started: www.familyofavet.com/state_of_veterans_families-why.html

The Statistics: www.familyofavet.com/state_of_veterans_families-statistics.html

Our Stories: www.familyofavet.com/state_of_veterans_families-stories.html

What We Hope For: www.familyofavet.com/state_of_veterans_families-hopes.html

FAQ About the Project: www.familyofavet.com/state_of_veterans_families-faq.html

Our Story: Stuck

My husband has served our country for 21 1/2 years in the Navy, Navy Reserves, and Army Reserves. We have been married for 21 years this year (2013), and we have been friends since high school.

I have been advocating for my husband since 2007 when he returned from a deployment to Africa in support of OEF. Prior to this deployment, he served two tours in the first Gulf War on the flight deck of the USS Saipan (amphibious assault ship) and again in Bosnia (human intelligence). He also served several years in CONUS working with JICPAC, and in the Army Reserves (OPFOR and 60 gunner). He was repeatedly recognized for his good work over the years.

For his most recent deployment, Marc was sent to Africa as an Individual Augmentee in 2006, performing Intelligence related work in support of OEF. He holds a TS/SCI clearance. He was a committed and affectionate husband and loving father of 4 young children (ages 6, 2, 2 and 1).

In 2007, he returned broken, angry and badly depressed. He was a different man. He began drinking heavily given half a chance. Life was changed. We could no longer go to public events, he would get confused, struggled to remember things and kept a notepad constantly, then would forget what he wrote down (or where). He was standoffish and cold towards me and our children, often flipping out/angry over the smallest things. He refused to talk about anything overseas. Watching the news would set him off (to this day, we do not watch the news in our home). He could be downright mean.

He went to great lengths to push me and our kids away, tried infidelity and other things. He was flailing around trying ANYTHING to get away from himself. He had flashbacks where he thought he was in a combat situation in our yard. I had to carry him into the house where he collapsed. We were at an elementary school event at a college stadium when it started to thunder & lightning, and we got separated in the crowd. I found him, crouched down near an exit as though he were holding a large gun and one of our sons standing there crying next to him, and he was completely unaware of his own child's presence. Our neighbors helped with the kids, and I was slowly able to get him to get into the van. When he snapped out of it, he was dreadfully ashamed, confused and upset. He withdrew further and things worsened. These are specific examples of actual events, and the majority of these symptoms continue in various degrees of intensity to this day.

In looking back, I can see went through some of these symptoms when he initially returned from Bosnia, and to a greater degree when returning from the first Gulf war (we were married months after he returned). I thought he was just having trouble adjusting from the military to regular life and it was a minor thing. I could not have been more wrong.

On his out-processing paperwork from Africa, they flagged him for "severe PTSD." Neither of us had any idea of what that was, or what it meant. We pretty much ignored it, to be honest. He never got treatment from the military, he separated and that was it.

All I knew, is that my husband was falling apart. In December 2008, I took him to our family doctor, who prescribed Cymbalta. This seemed to help for a while, enough that I was able to convince (ie, dragged) him to go to a vet center so he could get some counseling. He was adamantly against ANYTHING that had to do with the VA. By that time, I read a bit about PTSD and heard that EMDR could be a helpful counseling tool.

After his first EMDR session, either the counselor either didn't close the session properly, or Marc didn't communicate what was going on. As I was driving him home, he flipped out and attempted to jump out of our moving car on the highway. Thankfully, I was close enough to the side of the road, and pulled over before he could do it. I made him get into the back seat that had child locks and got him back to the center. The counselor was clearly angry about him coming back, and we left. He did try to go to a support group, which helped a little. But he never went back to that counselor.

By this time, Marc had gotten a civilian contracting job in the Intelligence field, due to help from a friend from his unit. This job required a lot of travel, and in some ways, that was a good thing for our family, though it's hard to say that. Marc further withdrew into himself. When he was home, he wasn't there, mentally or emotionally. He continued to have flashbacks, and started smoking (without my knowledge) for the first time in 15 years.

He did see a different counselor at that Vet Center, and I saw the same person for help for myself in coping with Marc. I also had come down with Multiple Sclerosis and was struggling with the implications of a lifelong chronic disease while I was trying to hold my family together. I was starting to have concerns when this counselor basically was telling me that the very REAL symptoms I was experiencing were in my head, and that he knew someone with MS who was a ballet dancer. I was thrown into a deep depression. My MEDICAL DOCTORS were taking me more seriously than my Vet Center counselor.

And then the suicide attempt. Marc has a habit of morbid thoughts and thinking about suicide, but had not taken serious action. I didn't realize how bad things were getting for him, I guess I had gotten numb to it because it was such a constant. I was so distracted with the day to day problems, my own health, our 4 kids (by this time, we found that our twin boys had serious learning disabilities), our house & finances... etc. I can't believe I missed it.

I called Marc, by chance, on his way home from work. He answered his cell phone, but he was flipping out and making no sense. I had no idea what was going on except that he was clearly in a bad place, and tried to calm him down and then called his Vet Center counselor (same one that I had), who spoke with him briefly (1-2 minutes) and called me back to say things were OK (they were NOT). I called Marc back, and he was all over the map and crazy. While Marc was talking to his counselor, I also called a good friend of his who was a former Ranger/sniper. Tim called Marc immediately, and talked him down. I firmly believe that Marc would not be alive today if it were not for Tim. By the time Tim reached him, he was on the roof of a parking garage and getting ready to jump. I also called our family doctor, who said, get him to an ER and have his medications checked. This sounds like it took hours, but it all happened in minutes. After Marc talked to Tim, he called me in a rage... he was PISSED that I'd called Tim, now he couldn't do it, and he blamed me. He screamed at me until his phone ran out of battery. While he was on his way, I rounded up some friends to keep our young kids, expecting that we would be at the ER for a while.

When Marc got home, he was seething, but not raging. I got Marc to go in the car with me and told him that our doctor wanted to have him get his meds checked, but since their office was closed, he wanted Marc to go to the ER. Marc was MAD. He did NOT want to go to the ER. He was sure that something horrible would happen to him, he would lose his clearance, etc. I did my best to talk him down, kept repeating, this is only for a medication adjustment, that's all that our doctor (who he liked) wanted him to do. It took me driving him around for nearly 2 hours before he agreed to walk into the ER on his own feet. I didn't want to go to the police or bring in any kind of law enforcement. In spite of what we were going through, I still deeply respected my husband and I was doing my best to get him some help.

So, he walked into the hospital. I purposely picked GBMC where one of my friends (who was part of our wedding party) worked, so that Marc might feel a little more comfortable. I knew she couldn't really do anything, but it helped somewhat for him to know that there was someone there that he knew. We checked into the ER. I said calmly that our family doctor wanted Marc to be seen for a medication check as things were not going well. The intake person started asking some questions and Marc totally lost it, started telling her about every way that he was planning to kill himself. That was when he was admitted. He was so angry, at me at our friends (some came by to be supportive), at himself. He was raging and like a wild animal in a cage. He told me to get out. At that point, I told the doctors what I knew about PTSD, that he had no treatment except Cymbalta and counseling, about his suicide attempt, etc.

Later, I found out that Cymbalta effectiveness could be cut by nearly half from smoking.

They offered to send Marc to a bed at the Baltimore VA. I knew that Marc would flip if he was "tricked" into going to the VA. I pushed for him to go to a different hospital, and Shepherd Pratt was right next to GBMC. They had a bed, but no treatment for PTSD at that time. I figured that was better than the VA at that moment.

Wow, was I wrong. He was transferred to Shepard Pratt, I got in to see him the next day. They had him so medicated that he couldn't do anything. He was on an addict ward, and they made him go to their classes and such, even though he didn't have a substance abuse problem like that. He was almost convinced that HE was an addict. I got him out of there as soon as I could. They didn't know what to do with him, and he was getting angrier and angrier, even though on the surface, "compliant" with the program.

I was desperate. My friend's ex-husband's dad was Dr. Thomas Murtaugh, who was a leader in treating veterans with PTSD and had done some groundbreaking work in the field. I called him and told him everything that was happening. Even though he was retired, he wanted to help. He referred me to Tom Pinder, Director of the Elkton Vet Center. I called Tom, and I was a desperate wreck and had a hard time even explaining what was happening. He listened, and agreed to see Marc as soon as he was discharged.

It was very difficult to get Marc out of the hospital. They wanted him on these heavy medications and Marc wanted nothing to do with those. They finally released him into Tom Pinder's care. Marc went to talk to Tom. Our family doctor upped the Cymbalta dose. Marc stopped smoking in Fall 2009.

For the first time, I started to have some hope. Tom Pinder has been a lifesaver for Marc and for our family. I am so thankful for his expertise and genuine care for Marc and our family.

Tom treated Marc for PTSD since August 2009 to the present. He has been able to reach in and help Marc deal with his memories and has walked with him through the many traumas that Marc experienced in the military. Some of which, he is just now starting to be able to talk about, starting with the Gulf war, where he stood nearby when a Marine backed into the blades of a helicopter, exploding his head. Where he saw a buddy get his neck broken by a rotor blade, slamming him into the ground.

Where he volunteered to "help at a school" in Kuwait and ended up picking up body parts in the bay, making sure that there were 2 arms, 2 legs, a torso and a head in each bag. Where he was present for evacuations in Africa under heavy fire, where he worked in support of Marine operations. In Bosnia, where he was strongly directed to use a false name due to previous threats to families back home, where he was pursued, witnessed torture in order to obtain valuable information that was used to prosecute and convict various war criminals. In Africa, where he was in the middle of a highly volatile area, witnessed children being used as human shields, gang rapes, and many more deaths & atrocities.

In the meantime, Marc was dealing with a lot of problems in his Navy Reserve unit since returning from Africa. They were sending him to medical, medical had no idea why, then he would return, and his command would be mad at him for not "completing his appointments." Marc was unable to figure out what they wanted him to do, and he became increasingly frustrated and angry. Finally, he was given direct instructions to go to Bethesda for an evaluation. Nobody told him what kind of evaluation. It turned out that it was a mental health evaluation. Again, he was diagnosed with PTSD and a few other issues. He never received the treatment recommended from that evaluation.

In January 2010, Marc's contract ended. His unit moved him to another unit about a month before his contract ended, and his retirement paperwork was lost (as far as we can tell). We were able to confirm that the Navy did send his military medical records to the Veterans' Benefit Administration in Baltimore.

This is important, because we have been trying to locate these records for more than a year currently, and it is preventing Marc from getting important diagnostic services which may explain why he has additional symptoms more consistent with TBI than PTSD even though he only had a minor head injury in the Navy.

In the time between January 2010 and November 2011, we had many ups & downs as a family. Marc continued to exhibit many of the aforementioned symptoms. He was all over the map emotionally when he was home. He would stop taking care of himself, to the point where he was written up at work for it.

I had to negotiate to get him to shave and cut his hair and shower. He continued to be angry, avoid me, avoid the kids, avoid himself. He loathed himself, as a man, as a human. He didn't want to go to counseling. He didn't want to take his medication. He was constantly exhausted. He had severe GI problems. He couldn't sleep, and would have violent, violent dreams. I woke up in a headlock or because he punched me in his sleep when he did sleep. He would exercise to the point of falling down.

He continued to have flashbacks, would react to any loud noise. We could not go to public events where there was any kind of crowd and the 4th of July and New Years were days to dread, shut the windows and stay inside. Many times, he would hole up in the basement.

Our kids don't understand this stuff. They are at the point where they accept it if Dad is having a bad day, and I have done my best to protect them from the worst of it. Due to all that we have been through, my memories of our kids being young is nearly non-existent. I have been in survival mode for years and struggle with my own issues as a result. Again, I am thankful for the Elkton Vet Center, as their people have been incredibly supportive of our family and our kids. Our oldest sees a counselor there as she's been harmed by all this turmoil, and we have had some family counseling sessions as well. Supporting the FAMILIES of wounded warriors is JUST as important as supporting the warriors themselves. I know that if Marc didn't have us, he would likely be homeless and desperate. If we didn't have this support, we could not be there for him as we have been.

So, fast forward to fall 2011. Marc started falling apart again, but in a different way. He was becoming unable to handle the responsibilities at work. He still struggled with self-care. He was extremely paranoid. He continued to be angry and withdrawn, though he was beginning to turn a corner in our relationship. He wasn't blaming me as much for the things he suffered. He still was dealing with symptoms previously mentioned. He still was dealing with a lot of anger, nightmares, patrolled the house at night, etc. He started getting lost going to & from work. He was not doing any bad behavior, but was getting honestly lost. He started relying heavily on his GPS in the Prius to get from one place to another. His stress level was rising exponentially. This was strange, because the fall was usually a better time for him than the summer. When the heat would come on during the summer, all his symptoms would spike. When the fall came, and coolness set in, he would normally get a little relief.

At the end of November 2011, he broke. He called me from his car, he was lost, he was exhausted, he couldn't keep going. He was broken and sobbing. I talked him home. He was a mess. He talked to his boss, who said that he should get help and helped him get on short term disability via Cigna. We called Tom. He recommended Coatesville as a good option if Marc could get in there. First, Marc needed to get to a VA hospital. He did NOT want to go to Baltimore (in his words, it smelled of vomit and cigarettes and he didn't trust them). So we went to Perry Point. They had no beds, they were going to send him to Martinsburg, WV or DC, but at the last minute, something opened up in Baltimore.

Marc was not happy, but at that moment, there was nothing he could do. He was in crisis and he needed help.

They put him on the 6th floor, and he shared a room with a guy who had been blown up. They connected and watched each other's backs. Always vigilant, and in spite of their injuries, they tried to be a help to the nurses with the other patients.

We got the application going for Coatesville, and Marc was transferred there. At first, it seemed ok. He was really trying to participate. He brought a notebook to every meeting (kind of like a shield) and was on time. The groups were hard, and left him in tears. He was falling apart, and told the doctors some of the things he tried to avoid dealing with stuff.

For whatever reason, they didn't get it. Even though he wasn't diagnosed with TBI, he had "other symptoms" not consistent with PTSD and they felt that this wasn't the right environment for him. They had no options, just that this wasn't right. And this was the VA's "world class" PTSD treatment option??

No answers, no follow up care. Just, you don't fit exactly with our expectations, so goodbye. I spoke at LENGTH with the young PhD, and she said she had problems with Marc getting emotional, with the fact that he was on time, and had a notepad. She had problems with some of the things he did to avoid pain. She outright refused to contact Tom Pinder who had been treating him since 2009, for insight, or at least to consult. She said that he was delusional because of having to use an assumed name, basically questioned the validity of his service and what he did when he was overseas!!

So Marc was told to leave, and before I could get up there, he was wandering the streets of Coatesville, with nowhere to go and a bag of personal belongings, starting to walk home to Towson (just north of Baltimore). They basically kicked a wounded, combat-trained vet, onto the streets in the middle of January in Pennsylvania. I could not get up there, I had 4 young kids, it was late in the day, the soonest I could go up is the next day, had to pull everyone out of school, etc. I convinced Marc to go back, and they put him in a high-risk ward overnight. This discharge was handled TERRIBLY. Marc already had enough paranoia and now it was directed at the VA.

I was desperate. Marc was in bad shape when I was able to get him home. I got him up to see Tom several times just to try and keep him stable. Coatesville added meds to the Cymbalta, which somewhat helped.

At some point, a VA doctor tried to put Marc on Zoloft, and said to stop Cymbalta cold-turkey and start Zoloft over a weekend. He became violent and psychotic!! I was afraid for myself and our kids. I immediately stopped that and returned him to Cymbalta. Their reasoning is that the VA doesn't usually prescribe Cymbalta because it's expensive (no generic). Unacceptable. I had very few options. Marc was falling apart, and in December, I got connected with Family of a Vet.

They helped connect me to a VA FIRC. What an amazing program! Maureen connected me with Hope for the warriors. They helped get Marc into the Military Wellness Program at Holliswood hospital in Queens, NY. They offered a DOD certified program for PTSD and TBI. Marc was admitted (he was on short term disability through Cigna / his employer so we had health insurance). They diagnosed him AGAIN with PTSD. He was finally getting help!! But because it was through private insurance, they kicked him out once he was 'stable' and before he completed the program. He came home, and was a mess again. He was referred to the Aspen outpatient program even though that was not a military PTSD program. It did not work for Marc, there were folks there who were extremely anti-military (at least that was Marc's perspective) and he couldn't let down his guard.

After this, Marc attempted to return to work. He does not want to be on disability/etc. His goal was to get back to regular life. He did OK for the first week, and then things began to slip again. His symptoms spiked, in spite of the additional medications, he was falling apart again. He hung on for about a month, then went back on short term disability to try and find help.

He attended the PRRC program at Baltimore, because it was just about the only thing that was available locally. It was somewhat helpful, it gave him a place to go, some coping skills groups, etc.

He was designated as a patient community leader. But this solution was primarily for people who were much less functional than Marc, so while there was marginal benefit with the coping skills, it wasn't really helping Marc. Certainly not to the level that Holliswood had helped.

In August, Marc contracted a pasturella infection from an animal bite. He went to the VA hospital, who prescribed a basic antibiotic. It didn't work, and the end result is that Marc was hospitalized through the fall of 2012 due to life threatening infection. This is not the first time that Marc has had trouble with infections going from simple and blowing up. It's like his immune system just doesn't respond the way it's supposed to. At one point, he was on 2 IV antibiotics and an oral antibiotic after the PICC line was put in. It was terrifying.

During this up & down with the infections & hospitalization, the PTSD group was trying to evaluate Marc. He was all over the map mentally and emotionally after the previous months of trying to get decent treatment and continually falling out of the programs. Because he was able to complete the PRRC program, it seemed that maybe he would be ready to tackle the PTSD program and take the next steps towards getting well. But he was extremely spun up and the hospital had taken him off all meds except cymbalta (without my knowledge) which meant that Marc was even WORSE than before in terms of mood swings and anxiety and highs & lows.

When I read the report, it sounded like Marc was a completely different person, or at least that the person administering the test & evaluation was seeing him as a completely different person than he is.

She indicated that he was malingering, which in my interpretation says, "faking it" to get income. Let me be clear: Marc had a $115,000 / year salary, full benefits for the family, and a PURPOSE in his work, prior to his falling apart in 2011. NOBODY would do that in exchange to the 30K / year in VA disability, with no health coverage for your family. Our mortgage alone is 2,300/ month. I have a chronic medical condition, our kids have learning disabilities and my oldest daughter is dealing with depression.

It was (and still is) EXTREMELY PAINFUL to be told upon reading these records, that everything we have personally experienced, EVERYTHING that we continue to experience, is basically a lie in her professional opinion?!?! Again, the people in the PTSD area REFUSED to speak to Tom Pinder, Marc's VA VET CENTER COUNSELOR who has been treating him for PTSD since 2009.

And we have no recourse. There are no options.

In spite of the fact that Marc did complete a sleep study in March (I believe) 2013, which he was told AGAIN, that his sleep patterns were consistent with PTSD & nightmare disorder. At least that was encouraging in a way, because it VALIDATES the multiple diagnoses of PTSD that he's received. You cannot "fake" sleep.

And then we had a C&P evaluation, which seemed to echo the PTSD evaluation and didn't even take into account the more recent sleep study, he basically discarded the letter written by Tom Pinder that said he's being treated for PTSD for the past several years, he interrupted repeatedly during the interview, and basically blew off the reality of what Marc struggles with, and our family experiences, every single day. His priority was was talking about Marc's childhood, which had problems, which have never been denied or hidden, and for which Marc had received early intervention, as well as adult counseling. His conclusion reflect his disregard for what Marc told him, what I told him, and tries to deny the fact that Marc's problems ARE service connected. So, today, except for very basic medication management and counseling, Marc has been out of treatment for anything since August 2012, more than a year.

He was given a part-time psychiatrist in the mental health clinic to mange his medications. She has been supportive, but she is only in the office one day a week, and cannot be reached using secure messaging. She at least, called Tom Pinder and spoke to him about Marc, and noted it in the records.

I have asked REPEATEDLY for referral to support groups, mindfulness group, something, ANYTHING to help him develop and use new coping skills. ANYTHING to help us get way from dependence on the VA and back on our own feet.

But truly, nobody has responded. The answer that keeps coming back is, maybe through the PTSD clinic. But Marc was told that he is not allowed to go there for any support because they "don't know what's wrong" and they "don't want to make it worse" since not all of his symptoms are an exact fit with PTSD alone. And at this point, it would take a miracle to get him to walk in there due to his severe mistrust and paranoia about talking to these people.

But no further investigation. No speaking to his counselor. No trying to even figure out what is going on. Just, sorry, you don't exactly fit here, goodbye. No thought given to the fact that he was off and on his medications when the tests & interviews were done. No offer to re-evaluate him using a different tool or try and determine what's going on.

This is consistent and disturbing pattern, where no actual treatment is provided:

• When Marc went in for GI testing, they basically sent him on his way, in spite of the fact that he suffers with gut problems for hours a day. They wanted him to try a medication that might slow his guts down (and that one of the side effects was to cause more diarrhea), but no idea what was really wrong, and no further diagnostic tests.

• When Marc went in for the sleep study, it was helpful that they diagnosed him with PTSD with Nightmare disorder. I did not see that noted in the health records office notes, however. And there is no treatment. No treatment was offered for the "non interruptive" apnea (severe snoring), and no real treatment options for the sleep disturbances either.

• When Marc was at Coatesville, the verdict was "you don't fit here" but there was no treatment or follow on care

• When Marc finished the PRRC program, there was no transitional help in getting back on his feet, or helping him to move forward.

• When Marc goes in for medication review, asking for help/treatment, the answer is "Sorry, we don't have anything" in this area.

This is not treatment.

This is not going to help Marc get well.

On my own, in looking for answers, I have done additional research about the areas where Marc was deployed, the medications he was required to take for the military, and there is one possible option that may explain some of the anomalies that have prevented Marc from getting any kind of real treatment.

No, it's not TBI, while he fell off the deck during his first deployment and busted up his head, he cannot recall ever being blown up or near an IED.

One answer may be Mefloquine / Lariam. He was required to use this on every major deployment, and it is being phased out since 2008, due to the problems it causes. Some of the problems it causes are permanent brain damage.

We have been trying to get into the Wartime Injury & Illness group for a comprehensive evaluation because Marc was deployed from 1988-1992 during the first gulf war, again in Bosnia in 2002, and back to Africa in 2006. During every one of these deployments he took Mefloquine (Lariam), an antimalarial drug. The symptoms can appear as TBI symptoms, they can also show up (and exacerbate)PTSD symptoms. This is finally being reported by the FDA, and the DOD only uses it as a "last resort" medication now.

However, I need his primary care physician to REFER him for an evaluation. I am not looking for them to immediately check the box, I want him to GET TESTED. That's all. His PCP refuses unless we provide proof that he was on such medications during those times.

The Navy sent all of Marc's military medical records to the Baltimore VA Benefits Administration. We confirmed this with Navy PERSCOM. They sent them in 2010. We have not been able to put hands on them, and our copy was destroyed in a flood from a hurricane (which we still haven't recovered from).

Nobody returns calls, and we can make no progress.

So, it's another Catch 22. Here is a VIABLE possible explanation for some of the additional symptoms that Marc experiences. Yet, I cannot get him in for TESTING without the records that the VBA has in storage in Baltimore. He has his DD214s that prove he served in the affected areas. I cannot get those records because nobody seems to know who to talk to. I recently found out that the Baltimore VBA is the second worst in the nation (after Los Angeles) for errors and delays.

It should never be such a fight to obtain care for injuries sustained during deployments! If Marc didn't have me to advocate for him, he would be a statistic. How many men and women are statistics because of these obstacles to help EARNED by serving our country?

And as caregiver, it falls on me, to keep Marc stable. To manage his medications. To try and help him remember skills that he was briefly exposed to 1-2 years ago. To help him feel like he is not alone. To manage every single thing in our house & family because he is unable to do so. Finances. Home repairs. Kids. School work. Debt. Mortgage. Medical care. Schedules. Yard work. Even completing minor tasks is difficult for him. To take care of all administrative issues, military stuff, etc.

And I am grateful for those who HAVE helped or try to help, like Maureen Merkl (FIRC, an angel), Tom Pinder (Director Elkton Vet Center), Dr. Murtaugh (Retired, Passed away), Dr. Lankerani (Psychiatrist), Dr. Eby (PCP), Janet Ramsey from the Baltimore OIF/OEF office (retired last year), the Ortho team that helped repair the damage from the infections.

I am not angry at the VA or any individual person, I think that the load is increasing exponentially and that most of the time they are trying to help while overwhelmed. But there is no excuse, even if there are good reasons. We are not the only ones who are hurting.

The fact that I have to fight so hard is WRONG.

Marc has unfortunately been one of the guys who has repeatedly fallen through the proverbial cracks. I am getting really, really tired of it. We are heading into 2014, and I have no idea what is going to happen one month to the next. I do have Champ VA, but nobody seems to take it, and I don't have the cash to get care for MS. It's only a matter of time before my health fails, and then what??

We are in pain in so many areas. Marc individually, and both of us as a couple. Our kids feel it, my teen daughter is in counseling for depression and I'm really worried about all of our kids.

This letter covers the "high" points. We continue to struggle with the military and other issues that I am working with legal via Navy Safe Harbor to remedy. And looking for non-profit "free" treatment, too.

So, in the meantime... here are THREE things that would help our family TODAY:

• Re-evaluate Marc at Perry Point (or somewhere OTHER than Baltimore) for PTSD, from scratch, independently.

• Order the comprehensive and mefloquine/lariam evaluations through the Wartime Illness & Injury group, based on his DD214s since the VBA can't provide his records at this time. (And/or, locate Marc's military medical records that were sent from the Navy to the Baltimore VBA in 2010)

• Make support groups and coping skills groups more accessible, not only to Marc, but to every veteran so that they have the support they need from other veterans and can develop the skills they NEED to manage their health and well-being.

This is just three things. Just three!!

I know Marc’s C&P will be a problem at some point, but my priority is to get him TREATMENT so we don’t have to rely on that.  We want to move FORWARD and towards independence, and get back to a regular life and work.  But without treatment, without help for the injuries Marc sustained during his military service, we are stuck.

To learn more about the State of Heroes and Families project, please visit our main site or visit any of the following direct project links -

Why This Started: www.familyofavet.com/state_of_veterans_families-why.html

The Statistics: www.familyofavet.com/state_of_veterans_families-statistics.html

Our Stories: www.familyofavet.com/state_of_veterans_families-stories.html

What We Hope For: www.familyofavet.com/state_of_veterans_families-hopes.html

FAQ About the Project: www.familyofavet.com/state_of_veterans_families-faq.html