Multiple Sclerosis Has My Husband

2012-02-18T20:55:00.002-05:00

MRI looks great! My husband is now in "stable disease." He had a MRI last week and the neurologist called me Thursday and gives me the good news. My husband didn't give it a second thought. I was thrilled.

So, why is he not?. Well, the damage is done. There is no turning back. Some things get better with time. When he struggles with walking and must use a cane, that is usually temporary, as things get better as the brain finds another route for communicating the steps for walking. The cognitive issues he faces are not coming back. His faithful neurologist, who deals with his bad moods just like me, tells us that some things don't come back.

I married a man with an IQ in the above normal range. I live with a man with an IQ in the below average range. I can see why he is trapped in this disease. I sometimes feel trapped. I am not sure in what I am trapped. Maybe, a better word is squeezed. My emotions are squeezed. I want him to be happy and make more of an effort to exercise, or eat right. He doesn't, even with this good news. I want him to play with our children more, he doesn't.

We are planning the typical vacation with children and heading south to Orlando. We plan to visit Disney and the best bass lakes in America. We have been planning the trip for about 2 months. My husband has not gotten excited yet. The children are not excited since he is not and I am left planning a trip, worrying if anyone will enjoy it.

My husband tells me he is goign to make an extra effort during this vacation. Makes me think he should make an effort all of the time.

Maybe, I am trapped in this disease with him....

2012-01-23T23:20:00.003-05:00

Small Town USA

I live in Small Town, USA. Less than 3500 people in the nearby town limits. Quaint, southern, close, comfortable are all words that could describe my town. Lately, death has taken over. A beautiful young woman, 27, who lived down the road, passed away last week. She had a young son. A couple of nights ago, a 24 year old father of three passed away after entering their burning house because he thought her heard a child.

Death. Frequent. With 7 billion of us on earth one would think we would not become so consumed by it and that we would be expecting it.

I sometimes worry about my own mortality. I am ready. When it happens, it happens. I do have concerns and fears of leaving my children. I want them to be taken care of by a loving, well person. I want my husband to be with them, but I know he can't take care of them.

My sisters have grown children. My mother is in her 70s. My mother in law... well... that is another story. What do mothers do when they plan for the care of their children in their absence?

The comical, survivalist in me says to mail order a bride as they did in the old days for my husband who is consumed with himself and his MS. Reality stares at me and says, " What is the plan?"

I have no idea. I'll let you know when it comes to me. In the meantime, life goes on.

2012-01-21T22:09:00.001-05:00

Orlando and back...

My sisters and I flew to Orlando for the weekend on the cheap flights from my hometown. I left my MS ridden husband with our children. Children in charge of course. My mother lives close by so it was no big deal to have her bring food by so they would at least not starve.

I had a relaxing, wonderful weekend, which I recommend for all care givers to do on occasion. I had great fellowship with my sisters.

I returned home to every dish in our house dirty, every stitch of clothing dirty. I have spent all week working all day, returning home to a full time job of laundry, dishes and cooking meals to get all bellies full.

The interesting thing is my husband has been so very precious since my return. He has been helping around the house, helping with the children's homework, holding my hand, wanting true attention from me.

What I am trying to say is, the usual attention he wants from me is some pity. He doesn't want me to say positive things or to give him positive advice. Because his MS has him, he often wants to bath in pity and self destruction. But this week, he has been amazing. Sweet, kind, attentive. I like this guy!

The kids tell me they watched TV all weekend, didn't eat much and watch their dad sleep lots. I guess it is a good thing that I only leave a couple of times each year.

Have a great week!

2012-01-10T22:47:00.002-05:00

My first blog. Wow. I am a little nervous, a little anxious andvery much excited. I have thought aboutblogging about my experiences for some time, but wasn't sure I needed to"air my laundry," as my mom would say. I have been a very private person for most ofmy adult life. I have had my share oftrauma, loss and even a little drama. Ithink we will get to that later.

I want this first post to be an introduction to my husband, who iscontrolled by his disease.

Introducing David

Multiple Sclerosis came into my life in 2000 after my husband, David, fellface first into the street in Atlanta at the Georgia Dome after a football gameagainst the Dallas Cowboys. He is a bigCowboys fan. He was not hurtseriously. Just a few bruises and scrapes,but his eyes were moving back and forth, back and forth (think cartoon eyesafter a hit with a frying pan). We drovethe 3 hours home so that I could at least get him to our family doctor, as Ihad no idea what was happening. At the office,two doctors examined David and told us that either he had a brain tumor or hehad Multiple Sclerosis. The eyemovements were diagnosed as Nystagmus. Davidand I looked at each other with matching thoughts. “We don't like either option!”

In the three days that followed, every test imaginable was run. Spinal tap, MRI, blood work, eyeexaminations, CT scans, you name it. We had excellent medical care and weregiven a definite diagnosis of Multiple Sclerosis. We were referred to a neurologistwho told us that David needed to be on some form of therapy. Therapy was difficult. David was working with side effectsequivalent to the flu, knots on his legs the size of golf balls at injectionsites, dizziness, fatigue, you name it. He was a real trooper. He had MS. He had this. No problem.

In 2006, our world began to crumble. Between March and June, David banked five (5) speeding tickets. One of those included reckless driving. He had gone to a bar and come out needingstiches. His temperament with our children was changing. He was withdrawing. His behavior was irrational. I thought he was trying to kill himself. Looking back, maybe he was.

David called me at work on October 6 to be exact. He said he couldn’t move.

There I was, teaching a class of 26 or so 5^th graders Math, thinking,“what does that mean?” He told me he ason the highway, and couldn’t move. He wantedme to call the police, because traffic was backing up behind him. Talk about feeling helpless, I didn’t knowwhat to do. He was crying and upset. I kept asking him questions. Is the truck broken down? What is going on? I did call the police. I calmly told them he had MS, and that heneeded help and I could not get to him. They drove his truck to a nearby parking lot and left him there.

When I arrived, about 40 minutes later, there he sat. Upright, in the passenger side of the truck.Not moving.

I took him to the ER only to learn that he couldn’t move because of a few baddiscs in his cervical spine blocking off the spinal cord. Wasn’t MS enough? Now a bad back, what else was coming.

They did many tests on David preparing him for surgery. He had a CT that revealed that he had a masson his thyroid and that would have to come out before the discs could berepaired through an anterior discectomy.

Two surgeries in two weeks, and we were on the road to recovery. Only, at the same time, my father, who was asa father to David, was dying of Prostate Cancer. David went into a tailspin of depression. Myfather died just a few weeks later.

There are big blocks of time that I don’t remember during all of that. I was at the hospital and eventually at homewith David during the day, then returning to work during the day. My nights were spent at a Hospice facilitywatching my father pass slowly into a better world. I was sleep deprived and was becomingdepressed myself. Then one night, as apatient next door passed away, I felt a presence. I have called it an angel. A breeze in a closed room, a flash of lightin darkness. It gave me a ray of hope,but not until later.

I think at times like these, our body and mind becomes unknowing. Unableto process what is happening, our bodies go on auto pilot.

David was not able to return to work after this time. He had severalexacerbations which took so much from him cognitively. He became chronically depressed. He remains chronically depressed. He is nowreliant on pain medications, anti-depressants, and a host of other pharmaceuticals. He will not seek professional help. Hecertainly won’t eat right.

On the brighter side, David has his depression under control much of thetime. I see this as a sign. It is timeto start getting this disease before it gets us!

As I sit and read over this blog, I am in awe that I survived with mysanity. I am stunned that many of youout there deal with so much more. Let usmake sure to get up and put one foot in front of the other, each and every day. Strive to be happy and be our best. Let us see what the new day brings.

Next time: I am leaving for a weekend in Florida. David and the kids are home. Just the three of them. Yikes!!!