Friday, September 23, 2011

Change of life!!

No, not that kind!  Or, maybe exactly that kind.  My son and his family, moved, very abruptly, to Pensacola Florida 5 weeks ago.  They had previously spent 8 years in the Finger Lakes area of New York.  Last winter was especially tough and they decided, enough is enough.  So, they now live in Florida.  We went to visit them this week.  Pensacola is nice.  I had been there before, but my wife had not.  I knew, my California born and raised wife would love it.  She did.  The beaches, the palm trees, the warm weather, it is almost as good as Hawaii.  Maybe better, since the grand kids are there!  We have been away from our family since they moved to New York.  We could not move there because we were both working and in the high earning parts of our careers.  Not to mention that we both strongly dislike cold weather, well enough snow up to your ear lobes!  But, now we are both retired, and, as you know, I am in the middle stages of LBD.  Still cognizant most of the time, and still able to cope with a move.

My wife has been sick over missing the grand kids and my son and his wife.  This week, we had a great time with all of the family.  I had the opportunity to go to my youngest grandson's school open house.  I met all of his teachers and interacted with him on issues pertaining to his adjustment to a new school.  It was wonderful for me!  I asked both grandsons, 14 and 12 years old, if they would like to have us live close to them again.  You may recall that we lived two door from them until the youngest was 3!!  In any case, both boys were ecstatic to have us close to them.  Of course, y son is worried about me and his mom.  Having him close would be a great help to my wife as I progress.  So, this is a big win to all of the family.

Of course, there are some negatives.  We have been in the Hampton Roads area of Virginia for 28 years!  We have many close friends.  My Navy friends are very dear to me.  I have many fond memories of this area and what it means to me.  There is also my Church.  I have NEVER been associated with a stronger fellowship of Christians in my life.  They have helped me, loved me, been my family for a long time.  Leaving them will be the hardest.  But, the pull of family is stronger than any other pull.  So, we are moving to Pensacola, Florida.  More correctly, the town of Gulf Breeze, Florida.  

It seems a vacation became a way of life.  At least, I hope so.

Tuesday, September 13, 2011

Regrets.

"Old Blue Eyes"  Frank Sinatra sang a song about; "Regrets, I had a few.." and he was right.  I have a number of regrets that I can now admit.  When you are young, healthy, and death is not a thought you have, you think that you are "bullet proof".   Don't believe me?  Look at the list of Medal of Honor awards.  All of them, or most of them are under 21!  Why, they think that grenade won't hurt them.  When I was young, and I injured myself on the ship, I rubbed it with my dirty rag and kept on going!  I had a number of concussions on the ship that I never told the "Doc" about.  Why, I was supposed to be tough.  Now, I am paying for that toughness.  Now, when I get a cut, I treat it properly so that I do not get an infection.  I am NOT "bullet proof" and I know it!  That was a tough truth to swallow, but I have indeed swallowed it, bitter as it was.

I have regrets about my Navy career that I have discussed at length in my other blog; "The Master Chief's Lair".  But one that I only admitted to myself, until now, is that I regret retiring at 20 years of service!  Yes, I probably made more money the way things turned out, but  left the career I loved.      I let my ego get in the way of my judgement.  My advice to all of you who are young, NEVER listen to your ego!  In every way, it will lead you down the wrong path, and you can't come back!

I regret that I wasted money on houses, cars, booze, guns, trucks, and other foolish endeavors.  Not because I need the money, but because it could have gone for good instead of foolishness.

I tried to be a good husband and a good father.  I tried to provide a secure life for my family, but truthfully, I could have done better.  It is the truth!  But, most of us probably have this regret if we are honest.  Just the same, at this point in my life, it bothers me.

There are things I wanted to do, like drive a NASCAR race car at a driving school.  My Neurologists says I can't do that now.  And my wife is enforcing that rule.  There are places I wanted to see that I will never see.  Why, because now, I don't have the desire to get out of bed, well enough take a trip across country.

I spend way to much time thinking about the "What Ifs" of my past, but the past is what I think of all day and those memories are beginning to fade also.  LBD and any Dementia is a cruel disease  because it robs you of today and imprisons you in yesterday.  You seek comfort, not adventure.  The known instead of the unknown.   Yes, I like the feeling of routine, comfort, and things known.  But I still long, every once in a while to live life on the edge.  But, i know that I would fall off now.

One other thought.  I am full of "Sea Stories" that I still love to tell.  But, no one really wants to hear them.  I write them in the other blog and many folks read that blog.  But, people around me grow weary of my "sea stories".  I don't know if it is because I am a dinosaur or because they never experienced what I did and they think I am not telling the truth.  Just rantings of an old man.  Then again, maybe most people today are not interested in a story about a young First Class Gunner's Mate, throwing up a stomach full of San Miguel and fried rice in a Captains from yard in Navy housing in Subic!  

Friday, September 9, 2011

I GIVE UP!!

Over  and I had to the last couple of week, I have been overwhelmed with a need to change my living conditions.   The over 55 apartment complex that we live in is fast becoming something it was not supposed to be, a place with kids!  It seems, the management has decided that, as long as ONE person on the lease is 55, any other age is OK.  So, we have teenagers, elementary school kids, and all the problems that come with them.  The parking lot has been littered more than once with broken beer bottles and I had to call the Police on a group of teens parked in our GATED, after mid-night, lot smoking pot!  So, I am less than happy.  Add that to the fact that the people who live over us still have the Rugby Team practicing in their living room and the new neighbors below us like to discuss their life at 1000 decibels.!

So, today we visited a "Continuing Care" community.  It is very nice, some what pricey, and probably not for us.  But, the visit still was educational, specially when the sales person told us I was not eligible for continuing care because of my diagnosis of Lewy Body Dementia.  That was very sobering.    But the sales person spent a few minutes telling me I did not look or act like I had LBD and I should get the doctor to say I was "Cured" and then after we were approved, we could go back to the way things are.  Then, on the way home, her questions brought up all of the old questions of, what if?

I explained to my wife that I am the recruiting poster case of LBD.  Just look at the LBD Association web sight and review the list of symptoms!  I have the "on and off" days and even hours, just as they describe.  Also, as I have discussed before, I HAD near photographic memory.  Ask anyone who served with me in the Navy, or anyone who was in GEICO Material Damage Adjuster's Course in 1989.  I could remember anything.  We had to memorize 200 components in the GM 400 Hydromatic Transmission in one night, no problem.  I aced the test.

The other part of this is that I can "ACT" like I am "Normal".  I can follow your conversation, inject a few comments, and you will think I am just fine.  But, I don;t remember what we talked about or even if we did.  So, after today, I have decided I am no longer going to try to look normal.  I know, I said this before, but, this time I am further degraded and I am tired of trying to make people comfortable with my condition.

So, from now on, people, even family are going to see the un-varnished effects of LBD on me.  Today was an eye opener and also very frustrating for me.  It hurts me to be told I am not ill and I am tired of hiding that pain and the effects of my condition.      

Monday, September 5, 2011

The American Health System

Since I remember things when I remember them, I wanted to bring up something that is relevant to my condition.  My Neurologist is a tenacious professional who, once she bites into a case, she will not spit it out!  She has treated me with dogged determination to extend my coherent life as long as is physically possible.  Once she reached the 80% solution on my diagnosis of Dementia,  she immediately placed me on the two newest Alzheimer's drugs.  She then sent me to UVA to get a second opinion.  No professional insecurity here!  The UVA folks determined it was Lewy Body Dementia as I have discussed before.  The UVA Doctors told my wife and I that my Neurologist was the reason I was doing as well as I am.

Here is what I wanted to relay to you.  I did some research on the British medical system.  What I found out is shocking. IN their system, they reserve Arcept and Namenda for the last six months of the patients life!  Now, what good would administering these drugs after the patient is already gone mentally and deteriorating physically to the point of failure?

Yes what I take is expensive, but it will extend my productive life and keep me from needing extensive medical intervention until the end.  My Father In Law lived in a nursing home, with Alzheimer's, for 7 years, at the States expensive.  There were no drugs for Alzheimer's then, and the State paid the price.  Now there are effective drugs and reserving them until six months before the patient dies is criminal.

So, the next time someone wants to tell you Socialized Medicine is good, tell them about Alzheimer's treatment in Britain.

Overwhelmed by the simpleist things

I had a very good day today.  I got some things done or well on their way to completion and I was feeling accomplished and more on top of things than I have in a few weeks.  Tonight, after dinner, I was relaxing in the living room and the telephone began to ring.  First a robo call from my Neurologist's office reminding me of an appointment.  Then a call from a friend.  By then, I was overwhelmed, angry, and overwhelmed.   It's not their fault, calling someone at 6 PM is normal, and acceptable.  It is me, or more precisely, the Lewy Body Dementia, that causes this reaction. 

My wife has noticed a more rapid progression in my memory loss and my lack of ability to deal with people and issues.  I get tired easily and she monitors my activities carefully.  However, I was doing so well today.  But, I should have expected this.  I have written before how a good day is always followed by negative issues.    Just the same, it was a good day, until this evening, so I should cling to that.

Another issue that is causing me emotional stress is my neighbors.  I have always had issues with the people who live above me.  It seems that had a football team that practices in their apartment everyday.  They stomp around, run the vacuum, and move furniture from 5:30 AM until 11 PM.  Now I have new neighbors below me and they like to argue, play their television loud and make the building shake by dropping heavy things!  I am surrounded by inconsiderate morons!  This is supposed to be a quiet, over 55, apartment complex.  Instead, there are more adult children moving in with their parents because they cannot provide for themselves.  Some even bring small children.   I might as well get an apartment in an amusement park.  It would be quieter!

OK, I am venting.  But the facts remain the facts and I am experiencing emotional issues because of all of this.  Maybe I need calmer quarters!  Maybe they need to be more respectful.  We will see.   It used to be that only BIG things bothered me.  Now, I am overwhelmed by the small things.  Lewy Body Dementia is working it's old magic I think!