Our Battle

I married Michael in 2007, a funny and outgoing guy that everyone liked. He was incredibly intelligent, and sometimes made everyone around him feel pretty stupid. The first year of our marriage was full of fun, going out and hanging out with other couples and at work parties. He was in the popular group - friends with higher ranking sergeants who wouldn't normally associate with just a private. But people genuinely liked him, he was easy to get along with and was just nice.

We had Maks in December of 2008 - the best thing that happened to us! Mike was so proud of his son, and Maks was a very popular baby among all the soldiers in his unit!

Michael deployed to Afghanistan in August of 2009, on our 2 year wedding anniversary and the day Maks turned 6 months old. It was a very hard deployment, and we lost many friends.

When he returned in July of 2010 - I was prepared for a lot of emotional baggage to be brought home. A few months went by, and things settled into our normal routine and life was going great!

Then he started sleep walking. It was just small random spells of sleep walking every once in a while, no big deal. But then it started to increase, and I began to notice that he wasnt always actually asleep when these zoned out sleep walking like event would start to occur. He would be sitting there wide awake, and then suddenly his eyes would get real large and "deer in the headlight" looking - and he would start doing really bizarre things. I finally took him to the ER one night, after he suddenly stood up and poured a whole gallon of milk into our mason jar that we kept pens and keys in - and he microwaved it. It destroyed the microwave... and I became concerned that he may do something that could unintentionally hurt himself or us. After being in the ER for a few hours he cleared up and was fully aware again, and they discharged us telling me that he is just tired and needs more sleep. I thought "bull crap - I am a mom, I know what being tired is like - I still am conscious of what I am doing". But hey, I'm no doctor so what do I really know.

Our relationship started to really change as well, which was very hard on me. He started to withdraw from my touch - I would sit down next to him and he would act startled and move away. He also would avoid intimacy, and would shy away from me. I finally called military onesource and set up marriage counseling. I was convinced he was cheating on me, or even that he was gay. Marriage counseling really did us no good - there was no real answers he could give me and it just came to a stalemate. This issue still was a big sore in our marriage for several years, until I was finally able to come to accept that it was not that he hated me, loved me any less, or even that I was hideous to him - but that it was part of his disease. It was 2 years before we found out he had a disease, however, so it was 2 years of a lot of hurt and heart break.

We eventually moved to TX from WA where we had been previously stationed. We said goodbye to all our friends we had made at that base and in that unit, and took the plunge into TX! I was so excited, goodbye rain and hello sunshine!!

It was only a month after moving there that he had a major hallucination/delusional episode. He had no idea where he was or what he was doing, was talking nonsense and was very obviously confused. He was also very jerky and his speech was very hard to understand. I took him straight to the ER and they admitted him for evaluation.

At first they were leaning towards PTSD, and had him set up with some counseling and more mental health evaluations. They put him on some anxiety medications and antidepressants. A few weeks later, he had another major episode... I took him back to the ER. This time they sent him straight up to their psychiatric wing and had him tested for drugs and hallucinogenics, and had him evaluated for "bath salt" usage. All those items came back clean, and they released him with the diagnosis of "under a lot of stress". A week later I had him back at the ER for another episode.

This weekly problem lasted the entire summer. He was barely working and constantly in and out of the hospital for being incoherent and confused. He would have times where his heart rate was through the roof and he needed to be on medications to keep him from having a heart attack from his own anxiety levels. But the doctors had no other answers other than PTSD.

I started to notice his personality changing, and he would have constant tremors in his hands and even his upper body. His speech was also being affected, he always sounded like he was talking with his mouth full of cotton. He would use the wrong words for things - I can't think of a good example, but his brain just wouldnt be able to pull up the word he meant and he would use some other word in its place that just did not make sense. His logic and reasoning became very poor, meeting him now you would never have known he had such a high IQ and intelligence level. He was becoming withdrawn and self absorbed, did not put us first anymore - it was always about him. And he would become rude and angry if I tried to change the TV to a cartoon for our son, or the cd in the car from his crazy music to our sons little CDs. He wasn't the dad he used to be, he was acting more like a child.

He seemed to be getting better suddenly though! He went through several months of no delusional episodes and he was fun and happy and close to us again. And then I got pregnant! Things were looking up for us! I thought we were all on the mend. Logan was born in May 2012 - and we were all happy!

Then a few months later he started having delusional episodes again, and this time they were out of control. He was very confused and very frustrated, he was having trouble controlling his limbs as well. He couldn't walk right or even move his arms. He had a few times where he couldnt remember how to do things like open the front door, use his own fork. I would take him to the ER each time and explained what happened - and the Lord was with us one night and a man named Dr Hess was on rotation. He immediately looked at Michael and said "he has some sort of brain disorder or injury". I think I may have actually cheered. I had been thinking brain problems for a long time now, and had even suggested it a few times to different ER doctors and was just scoffed at. I could tell by his face and mannerism that there was just something wrong with his brain.

So then the search began for a brain injury, or TBI as is very common with military and deployments. But after months of scans and tests, there were no results showing a brain injury or TBI. So they were once again at a loss.

Over the winter of 2012/2013 we were in the ER almost every Friday night (I don't know why Mike decided to ruin our weekends like that! Come on, lets do this on Monday nights dude!). He was now in a rather confused state all the time, his anxiety is always in control of him. He was having seizure like episodes frequently, and unable to do the most basic functions. He was becoming irritable, short tempered, rude, and just down right mean sometimes. Complete personality change. His hand tremors were a constant thing now, making it difficult for him to do a lot of things.

Thank heavens we had Dr Hess over and over and over again. Dr Hess did lumbar punctures to test for infections in the brain, CT scans to test for clots or tumors, and brought in a neurology specialist to evaluate him. The neurologist walked in and immediately pointed out different things that pointed straight to a neuro disease. She pointed out how he is always rubbing his hands like he is washing them, how he sits there and spreads his toes, how he keeps crossing his eyes and making them go real wide, and the tremors (that we had already been noticing). She said these are all symptoms of a neurological disorder like Parkinson Disease.

So we got set up with a neurologist in Arizona, at the Barrow Neuro Institute. We flew out one weekend to visit with a specialist. They evaluated him and were in agreement, and ordered for genetics testing to be done - they suspected either Parkinson's or Huntington's Disease. The blood samples were drawn and sent to the labs across the country for these special tests. We were told it takes 6 weeks for results and to set up a consult with our neurologist back at home to get the results. Six weeks went by and we show up for our appt with his neurologist here at Fort Bliss, TX. She sits down and tells us that she went in to pull up the tests and they still say "pending", so while we sat there she calls the labs to find out why the test results weren't sent in yet. She hangs up to tell us that the insurance declined paying for the tests so the labs had to throw them out.

So we have been struggling for the past few months to get those tests done, and finally we sat with the head of neurology so she could call and get a good explanation as to why they are not approving the tests. According to Tricare, they went over his case and his medical records and they feel there are enough markers and indicators to diagnose him with Huntington's Disease without having to do an expensive genetics test. While his doctors are in agreement with that, they also agree with us that we need some definite answers. Especially since its a genetic disease, and if it is positive - that means both our children have a 50/50 chance of having it. And if it is Huntington's Disease, they predict he only has around 10 years left to live.

EDIT: Huntington's Disease is NEGATIVE! 

Right now Michael is on 2000mg of depakote which has kept his weekly seizure like episodes under control. He still has major hand tremors, has jerky movements, and his legs and feet will jerk and move in uncontrolled motions. He has severe social anxiety, anywhere we go he gets very worked up and his anxiety makes him very irrational. He is starting to act that same way about interactions with us, his family, now as well. The kids get too close to him and he will act out in anxiety - jumps up and moves away, or pushes them away, and sometimes yells at them to go away. He is taking Zoloft for his anxiety, but we are discussing trying something else to see if it is more effective.

So this is our back story in as short of an explanation as I possibly could give you! Its been a long and hard past three years, I have often felt alone and defeated. But I always remember: His eye is on the sparrow - so I KNOW He is watching me.