Monday, May 31, 2010

Truth, from friends.

After my last post, someone commented that I was independent and hard headed, or words to that effect. They also commented that that was typical for Gunner's Mates. I gave those words some very serious reflection, and I have came to the conclusion, that they are right! Every successful Gunner's Mate that I ever knew was independent, decisive, hard headed, and would not give up or let anyone help him. In a combat situation, or just leading men in gunnery exercises, small arms training, magazine safety, ammunition handling, line handling, underway replenishment, any dangerous situation, that head Strong determination is a good thing to have. When I was the leading Gunner's Mate in any situation, from the time I was a GMG3, there was not doubt about who was in charge!

Now, however, it is becoming painfully obvious that I am not in total command of what is happening. My body moves where IT wants to, all too many times. My mind can't recall those facts that I used to be so quick with, like what day it is or where I am. And sometimes, my body forgets that I am not sitting on the toilet. A new surprise that this challenge has provided me in recent weeks. My reaction to all of these changes, up to this time has been to, in my own way, deny that I am having these problems, put on a front, live in "Show Time" as I have discussed before. This actually has caused me more frustration than the disease itself. For every one's sake, I try to be "Normal".

Well, I am not "Normal", I am me, and this is where I am at this time. So, from this point on, I am not going to be so independent and hard headed. I am going to let people help me more. I am going to let you see what is really happening. My wife knows, for the most part, but I even shield her from some things. But not anymore. I believe it is time to be honest and open about everything that is going on. Those of you who read my blog often are probably saying, how much more honest and open can he be? The issue is not with what I tell you, it is with what I let people see. I was on that ladder, with a big reciprocating saw because for me not to be on the ladder would make me admit I was not the man I used to be. For someone who believes in "Macho", that's a hard step to take. In my demented mind, I'm still the same tough, gristly, salty, Gunner's Mate I was at 20. I still think I can kick some one's but! Boy is that a fantasy.

So, from now on, I promise to be more honest and open with myself, and those around me. I'm not going to give up, I'm just going to scale back, based on the progression of what ever they finally decide I have. And to the person who provided me that feedback and insight, thanks!! I needed it and I know it was offered in love and care.

Thursday, May 27, 2010

A tough couple of days.

Things had settled into a fairly comfortable routine. I was learning to deal with where I was on the progression scale of my issues. At church, we finally decided to tear down the old shed. I ordered the dumpster and last Saturday, we really got a good start thanks to many folks efforts and a rental reciprocating saw from Home Depot. Wednesday, the Pastor and I rented another saw and got to work cutting more panels down and dropping the roof rafters. That's when I got in trouble. The extension ladder was leaning on the roof joice, and I was cutting rafters. Yes, I can hear all of you saying, what were you doing on a ladder?! Hey, I felt good, and it felt good to be doing something physical and useful. In any case, I cut the joice, the joice collapsed and the ladder, the saw and me, fell about 12 feet!.. The ladder got the worst of it, it is bent beyond repair. The saw made it OK, and I did too. Actually, it was fun. Yes, fun! I was alive again, doing something. I got up and kept working, for another hour or so. Yes the Pastor was concerned. But I assured him I was perfectly OK, and I am. A little sore this morning, but no lasting damage. And I still think it was fun. My complaint is, I am OK falling off a ladder, but my wife and my neurologist won't let me drive a race car with Richard Petty's Driving Experience. I think I will sneak out and do it anyway!

On a more somber note, we had to have our cat, Missy, put down today. She was 18 years old. Her kidneys failed, she lost 33% of her body weight in about two weeks, and this morning she could not walk. She had a good, long life. She survived cancer surgery almost ten years ago. Our Vet did not think she would live 6 months after that surgery. She lived almost ten very good years after that surgery and she was spoiled every day of them. Just the same, this was very sudden and my wife and I are in shock. It seem surreal, like a bad dream. We both loved Missy and will miss her. Because of my condition, we have decided not to get any more pets. The stress of loosing them is just too difficult for either of us. The emotional investment is just too much. We still have our miniature poodle. He is seven and doing quite well. I am sure he will miss Missy too. We rescued her from the street, 18 years ago. She was starving to death, skinny, and scared. We actually got caught climbing under our State Trooper neighbors police car, trying to catch her. He said, "I hope you have a good reason to be messing with that car!" He saw that we did and helped us corral her. She was a lovely and loving part of our family, and she will leave a hole that cannot be filled. Good bye Missy, I love you.

Saturday, May 15, 2010

Progression continues

My wife and I have recently noticed a marked decrease in my mental abilities. My bad dreams are increasing in intensity and number, interrupting my sleep. My anger and frustration at the world around me has increased. No I have not lashed out at anyone, but I want to. Even my mobility is decreasing and I find myself stumbling more and nearly falling while just standing. I was reminded by my wife tonight that I write this blog to chronicle my progress for my mental well being and for others to see. We have even began to discuss participating in a study to see if what I am going through can't be used to help others. Sort of being a live "Test Dummy" for medicine! I am OK with that. But what I am not OK with is my friends and acquaintances doubting my disease. SO, I will explain what happens when you see me acting normal. I recommend that you go to the Lewy Body Association's WEB site and look at the FORUM sections. There are a couple of good articles describing "Show Time". It seem, at the stage that I am at in my disease, that I can carry on normal or near normal conversations, making you believe that I am completely following what you are saying, and making sensible statements. That period of time of relative normal cognition is called "Show Time". Not my term, but what the medical field calls it. Many times, after we have talked, I will not remember what we talked about, or even if we talked. My personal perspective is that this "Show Time" comes from an inner desire to appear normal. We all have that desire. Remember High School?! Or, why don't non-Christian people swear in church? The answer to that is it is not expected of us, so if we did swear, we would not look normal in our environment. I could write a thesis on this topic just based on walking around a Navy Combat ship with a Chaplain. As you approach, before they see the Chaplain, there is cussing, crude jokes and stories, maybe even some Playboy magazines out. When the men recognized the Chaplain, the cussing and stories stop and the magazines disappear. It did not matter what denomination Chaplain it was. It always happened that way.

I am experiencing this "Show Time", and from my research, most Dementia sufferers, are the same way. In later stages, we don't realize what is normal or expected, and therefore stop trying to meet that unattainable standard of the outside world.

But trust me, I am struggling to maintain what is left of my status quo. My wife drives more, I don't go out at night, I don't want to do much, and I have troubles remembering the simplest things, like what day it is. I spend a lot of my mental time in the past, thinking about my Navy days, early married days, and even my childhood.

I credit my Family Doctor and my Neurologist for recognizing what was happening to me early enough to get me on medications that would maintain my ability to express myself, understand some of what's happening to me, and give me time to slowly slide into the latter stages of this disease. My wife's father had Alzheimer's. His wife covered it up for a long time, and after her death, and the shock of that to his mental ability, we all recognized, way too lat, that he was in trouble. Of course, the medicines that I am taking did not exist when he was alive, so I am blessed and so is my family. At work, the first person to notice what was happening with me was the real brains of the Search Radar Branch, Don Bolick. Since he and I worked so closely together he first caught the little mental mistakes, the lost knowledge, the inability to do my job effectively. I could "Fake it" with others, but not him. We were and still are that close.

I guess the purpose of writing this posting is two fold. To let everyone know what I am really going through and to thank you for caring enough to wish I was really OK. And the fact is, I am in good shape for the shape that I'm in. I will never be better than I am today, and I will get worse before this is over. Everyone needs to understand that and let me deal with this disease on my terms. I don't want to appear mean, ungrateful, or disrespectful. I love each one of you. But I am dealing with a terminal, progressive, disease. That's the fact that we all have to face, together.

Sunday, May 9, 2010

Progression..

Regardless of what the medical profession decides the final name of my disease is, Lewy Body Dementia, Parkinson's with Dementia, Alzheimer's, Frontal Lobe Dementia, what ever, it is progressing and I see it from within way more that people see it from the outside. Lately, I have noticed a severe depression every night, starting when the sun goes down and lasting until I go to sleep. It colors my mood, my thoughts, my desire to do anything. Anything I watch on TV that is the least bit tense, sends me deeper into this darkness. I feel hopeless, alone, deserted, and worthless every evening. Sometimes, I can escape into my memories of the past, most times I cannot. I feel like I desperately need to cry, but I cannot. I want to scream, but I don't. I find myself staying up later and later. When I go to sleep, I dream vivid dreams that resemble real life. Sometimes they are good and comforting, but lately they too have been depressing and emotionally stressful. I write this because I know some who read this Blog are caretakers of individuals with the same issues. I am asking for advice, insight, and help.

During the day, the majority of the time, I fell good, on an emotional even keel, and in control of myself. But I am beginning to dread when the sun goes down. Any input would be appreciated. Thanks.

Wednesday, May 5, 2010

Another stress gone!

As I said in my previous post, GOD'S timing is perfect and we need to have the faith to trust HIM completely. When the prospective buyer of our home said they wanted to close on 5 May, a mere two weeks from the contract being offered, everyone shook their heads in disbelief. Today, at 2PM, we signed the legal documents closing the sale of our home. Done, Complete! This is a huge stress removed from our minds. We have been worried, without cause, over this sale. Remember, we moved to our retirement apartment in early March. When we signed the lease for our apartment in February, the house was not even on the market. Not to mention the terrible housing market issues. But, GOD brought us a wonderful realtor who worked endlessly to sell our home. She even planted azaleas and flowers, HERSELF, to enhance our homes curb appeal. Now that's a dedicated professional!

So, as of today, we are debt free, living in a perfect community, without stress, having a great time, and ready to enjoy the rest of the good time that GOD gives us. Yes, I still have mental and physical issues that are annoying. Yes, they are progressively getting worse. But, I am having the time of my life. Linda and I really enjoy being retired. The freedom to do what we want, when we want. We have a trip to Iowa planned for this summer top meet some relatives that we did not even know existed. We even plan on going to the Barrett-Jackson Car auction in Scottsdale, Arizona next January. If you are a car "Nut", you will know what I am talking about. Do I have issues, yes. Are we going to let my physical and mental issues dictate what we do or how we feel. No! We plan on letting GOD show us the way.

By the way, if you live in the Hampton Roads area of Virginia, and need a realtor, Ms Faye Ninos of Wainwright Realty is the best!!

More later.