Sunday, December 28, 2014

My view of LBD

Much of my writings have been from the prospective of me teaching about LBD.  I figured that out as my wife was driving us home from the Commissary.    I often review my life in those quiet moments.  So, I decided to try to reflect on my emotions and perspective on how LBD impacts me. personally.

As I look back, this journey started with memory loss and some rigidity on,y left side.  I ignored it for a while and then told my wife and then my GP in Virginia.  He really keyed on the symptoms and sent me to a great neurologist.  At that point, I thought that nothing would be found.  But as the testing went on and became more intrusive, I started to wonder what the outcome would be.

Then, the neurologist sent me to The University of Virginia for a second opinion.  That really caused me to pause.  That testing and my neurologist's testing agreed and she told me she was convinced I have Lewy Body Dementia.  Linda and I were surprised and somewhat shocked.

My neurologist, who was an expert on this disease immediately prescribed Arecept and Namenda.  I now take Razadyne in place of Arecept, but they are the same thing.  Studied have proven taking these drugs early in the LBD journey help to defer the progression of the disease.

Now, four years down the road, I have seen many changes.  My reaction to the disease remains mostly the same.  I see what is happening to me as "interesting"!   I realize that seems weird, but it is how I view things.

here have been issues that depress me.  For instance, not driving, loosing my independence, and even the fact that I had to retire because I could no longer do my job effectively without extraordinary assistance.   Actually, I would have needed someone to do my job while I napped!  But then, at this point, who would drive me to work and tae me home?

The hallucinations did not bother me in the beginning.  The were small animals that I knew were not real.  But, seeing a man, in color, real as any man, walk across a busy interstate in front of me, as I drove shook me.  If I were closer to him I would have stopped or swerved to avoid hitting him and that would have caused an accident! You can see why  don't drive anymore.

I have written before about my depression over my loss of independence and friends.  Yes, I have friends, but they all olive in Virginia!  And I am in Florida.  That will not change.  That God for email and telephones.  This disease causes other issues besides memory failure and hallucinations.  For instance, I spend much of my days in another place and time.  I have day time dreams, while I am awake, that I am in the Navy, stationed on a ship, doing what I used to do.  That time continues to be comfortable to me.

I am depressed.  Some of it is chemical imbalance in my brain and some pf the depression is over my loss of independence, and isolation.

I also find conversations with new people difficult.  I cannot discuss things not related to my Navy experience since my mind lives in those times.  I am always asking people I meet here at Azalea Trace if they are Navy, where they were stationed and what the do.  This is difficult for others to deal with.

Then there are the "out of character" comments and gestures.  These started before my diagnosis.  For instance, at a Church business meeting, I would take the agenda paper and make a hat out of it and wear that hat!  My wife would "yell" at me.  She did not understand and neither did I.    Looking back, we both understand now.   There were other unscripted foibles too.  But they slip my mind right now.

I have said before that I am now in the second half of this disease and I am glad we live in this community.  I am not free to experience this disease without defense.  Before, I had to "pretend" to be normal all the time!    Why, because I knew most CCRC communities would not accept me unless I was a "Full Up Round"!   Now, when I do not feel mentally whole, it is OK.   I can be where I am without issues.

Then there is the physical side of LBD.  Again, I have written about the portion of the brain that controls the autonomic functions.  I suffer from constipation, urinary control issues, aspirating and choking, busy hands and now, more stability issues when I walk or stand and turn.  I have also lost much of my strength.  My legs have atrophied as have my arms.  I cannot life or carry heavy things anymore.  As I say; It is what it is.

All of these are aggravating at best.  They cause interruptions in my life but they have not, "YET" cause me a big issue.  They will!  I will fall and need medical attention sooner or later.  I live in the perfect place to meet those needs.

So, how am I dealing with Lewy Body Dementia?  I think I am doing well.   I am still mentally connected enough to discuss these issues most of the time.  Yes, there are times I cannot find the words to describe my emotions or feelings.  Yes, I am disconnected from the world around me.  Yes, I depend on my wife for more and more.  But, God is still giving me the ability to serve him with a Bible Study and I am hoping to find other Ministries here at Azalea Trace.  I refuse to give in to LBD.  Yes, the disease is winning.  Yes, I am willing to let LBD progress now that I live in a CCRC.   But, I will still use the abilities God reserves for Him for His glory.  That is what keeps me going!

I am still not angry about the disease.  I am not angry because elf the effects of LBD.  I am not even angry about not driving or loosing my independence.  Depressed over these things?  Yes.  Angry?  No.

What does the future hold?  I guess we will have to wait and see.  I hope you will stay with me as we take this journey together.

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