Thursday, April 28, 2011

The stress others feel.

This week, our best friends took my wife and I out for a very pleasant day to celebrate my upcoming birthday.  We had a wonderful time at the Chrysler Museum and a great lunch at a local Mexican restaurant.  As the lunch progressed we began to discuss the stresses in our lives.  I made a statement that I have never made before but should have.  My best friend is dealing with his own progressive disease.   In any case, the discussion turned to the recent stress in our lives and I stated, without reservation, that my friend and I were the reason for our wives stress!   It is true!  We are both long time married couples.  Our wives are totally devoted to us and have made numerous sacrifices over the years, especially when you realize the demands of being a Navy wife.   Now, when we are supposed to be planning our "golden years" our wives are dealing with diseases that very well may shorten our lives and drastically diminish the quality of life of us and our spouses.  That potential for a shortened life span and decreased quality of life is causing extreme stress for our spouses!  

There are a number of models relating to the stages of grief that one goes through relating to the a spouses death.  All of them start out with denial and then progress to anger.  There  are a number of models for the further steps, but none of them deal directly with the stress that one experiences in this situation.  Yet, here we are, two long time married couples, dealing with the same realities, but never really, truly addressing the stress that are building at an alarming rate in all of us.  It is effecting the health of our spouses, their quality of life, and their future way of life.

I do not have an answer to this issue, nor do I really think there is one.  I do know that honestly, openly facing the issues helps.  All of us need to speak our minds, express our feelings, and let ourselves grieve.  Yes, I said grieve.  Unlike a sudden death of a spouse,  living with a spouse that has a terminal disease is tantamount to living with constant death.  Every time you look at the one you love, it must cross you mind that this may be the last kiss, the last vacation, the last holiday.  That is the making for a serious case of stress overload!

Again, other than honesty,  I don't have a solution.  But, I do know that while I unwittingly stated the obvious, I am going to pay attention to my wife's emotions and those of my best friend and his wife.   We have been friends for over 30 years, we understand each other, share life's memories, survived numerous deployments, transfers, and will survive this, together.  There is strength in friendship and I am glad I have such a real wife ans such dedicated friends.

Tuesday, April 26, 2011

You have to laugh!

If you have followed this Blog at all, you must have seen a few examples of my attempt to laugh at the things that happen as a by product of LBD.  Some things are down right funny!  I realize that I have written some angry and "down" postings, but I really do find humor in my everyday living. 

Lately my memory has taken a marked turn for the worse.  You may remember my search for the garage door opener or as I call it, the remote control.  I found that in a light bulb box, in a closed plastic stowage box, in the bottom of the linen closet.  How it got there, I don't know.   But now, I think it's funny.  Just a few minutes ago, my wife and I were sharing a story about our outing to the Native American Pow-Wow held at our local park built on a mountain of garbage with grass on it.  True!!  As she told me the story and stated that I would always remember the circumstances, I began to laugh, because I know that I WILL forget the circumstances, and I thought that was funny.

You just can't take this too seriously.  Come to think of it, people take themselves too seriously.  That's why there is so much depression, so many suicides, so many strokes, so many divorces.  Lighten up people!   I had an Executive Officer on the USS Stein that said, "Navy is supposed to be fun.  If you are not having fun, you are doing something wrong!"  I agreed with the XO then and I agree with him now.  LIFE is supposed to be fun!  Yes, there are responsibilities, but if you live right, they take care of themselves.  I refuse to let my illness dictate how I feel.  Yes, sometimes I am reclusive, depressed, and overwhelmed.   But I still strive to fine humor in my life, even if it is at my expense.

External memory drives.

I was at a very large Bible study that I participate in on Monday nights.  It is a good venue because of the regimentation and organization.  The program runs EXACTLY the same, week in and week out.  That's good for me.  I have a number of good friends in this study and I like to see them.  Again, referring back to yesterdays post, the time is short, so I don't get too tired, and the routine is there, so it helps me feel secure.  During a discussion I realized that I was using "External Memory Drives" to help me recall dates and events that were fuzzy in my memory.  I know, you are asking yourself, what External Memory Drives?  I think it is interesting, but I use people that I know as "External Memory Drives".  When I loose a date, or a reference point relating to my life, my career, my disease, I ask the other person when that date was or how that event happened.  Many times, I will remember the general topic of what I am trying to say, but lack the specifics.  My friends,  are comfortable with helping me tell the story or relate the facts.  It is a little cumbersome, since, just like a computer, I have to access the Memory Drive first, but I seem to be able to access the required information most of the time.  Of course, those around who don't understand my memory loss and don't know my contact history with the person I am using as a Memory Drive, think this is odd and give me some very funny expressions.  But, that does not bother me. 

I really appreciate all of you who have stored my memories for me and are so willing to recall them at a minutes notice.  You make my life much easier. 

Monday, April 25, 2011

As this thing progresses.

Almost sounds like the title of a Day Time Drama or a Soap Opera if you are of a certain age.  But it is not, it is life, as we who are afflicted with LBD or any other degenerative neurological disease understand.  As this disease progresses and picks up steam, I still marvel at it's effect on my way of life.  It seems that the old Tech Rep and trouble shooter in me likes to look at this experience from afar.  It is interesting to evaluate the effects on my life, from a detached prospective.  I wonder if others take this approach or I am completely strange.

What effects, there are the expected ones with confusion, inability to learn new things, and even the hallucinations.  But, for me, there have been some unexpected issues.  I lived my life as an extreme extrovert.  I loved being in constant contact with people, in crowds, one on one, telephone calls, visitors, any way of being in contact.  I loved making speeches, Navy retirements, ceremonies,  teaching, meetings, and preaching.  Today, while I still like to be with people, I can only handle it in small doses for short periods of time.  Why, because I get exhausted trying to keep up with the conversation.  Crowds used to give me energy, now they zap my energy, quickly.  I avoid making telephone calls and with the exception of Church, almost completely avoid large gatherings.

Physical energy is another issue I am dealing with much earlier than I thought I would.  Last Saturday, we went to a local park, not 2 miles from our home, to observe a Native American Pow-Wow.  It was magnificent.  I am intrigued by the Native American culture, but I was completely exhausted at the end of 3 hours and came home and slept for 5 hours!  Not so long ago, I could have gone all day and all night.  Now, my dear wife has to balanced time, and my exposure to people to make sure I am not worn out.

A third surprise is my desire for complete isolation.  I really do not want to leave our home.  I am secure, staying in our home or in the apartment complex, all the time.  The things I used to enjoy and seek out, I no longer have a desire to do.  Yes, If my wife plans an event, I enjoy it.  But she has to take the initiative, I will not.    

The last thing I will address today is travel.  Travel completely exhausts me.  I used to love to drive for hours.  After my son and family moved to up state New York, we would visit them ofter and I would seldom relinquish the driving duties to my wife.  The last trip, she did the majority of the driving.  Why, because I have to concentrate so much to drive the car, I get tired quickly.  What used to be automatic to me is now an effort.  Then there is the sensory overload of the trip itself.  This last trip took me three days to recover from.  I was OK with that, because all I did was sleep, but that concerns my wife and makes her worry.

My efforts on this blog and my other two, keeps me engaged as much as I want to be.  I can write on the topics I feel moved to write on and have no demands from you, my readers.  No one has written me and berated me for not writing enough.  May that should worry me.  But it does not.  I realize my execution of the English language is sometime off. And I notice that even "spell check" has troubles with some of my word spellings.  But these endeavors still give me pleasure and psychological stimulation.  I appreciate all of you who read these musings and I really appreciate you replies.  I will keep writing and telling my story as long as GOD permits.

Wednesday, April 20, 2011

Sometimes, you just have to stand up for yourself!

My last Neurologist visit was less than satisfactory.  She seemed uninterested in my case, disconnected, and pre-occupied.  Sine I am suffering from a degenerative neurological disease, I am suspicious, even when there is no reason to be.  So, I was unhappy with the visit and I may have over reacted.  I was ready to stop all medications, and give up.  Then I was ready to find another doctor.  Then I was just going to quit.  My wife, being of a more calm nature, convinced me to get another appointment with my Neurologist and lay my cards on the table.  Today was the day. 

We had an 8:15 AM appointment, and were there early.  We had our ducks in a row and were ready to discuss all of our concerns.  When the doctor came into the room, I could see that she was herself again.  But, with my wife taking the lead, because I no longer can take confrontation, we calmly and slowly presented our complaints.  She saw value in some of our issues and seemed shocked by some others.  She apologized for the misunderstanding and we let her know that we really trusted her and needed her help.  Then, we all came to an agreement on my diagnosis.  Now, I have a foe to fight and I have a name for that enemy.  Just as the 14 year old at UVA said, and I agreed with from my own research on WEBMD and other sights, I have Lewy Body Dementia.

My neurologist also wants the assistance of a Psychiatrist, to pin down my issues with hallucinations and violent dreams.  I can agree with that request and will soon see that professional.  I feel better knowing that we are all on the same track.  Some people may not want a solid diagnosis.  Some people may never want to know what they are facing.  The trouble shooter in me makes me want to know what the diagnosis is and what we can do to fight it!  That's me and now she know that.  We really did need to stand up and clear the air today.  It worked and I am glad that we did. 

Tuesday, April 12, 2011

Where did I put that?

I have read all of the symptoms of Lewy Body Dementia.  WEB MD does a great job describing my disease and it's problems.  My neurologist is not forthcoming with future problems.  She prefers for me to "Discover" them on my own.  That's like a girl going into puberty without thorough, loving, training from her mother!  How do I know that?  Just trust me on this one.  In any case, I have mis-placed things before.  We all have.  I usually find them.  You know where they are, they are in the "last place you look".  That makes sense, why would you keep looking after you found the item that was lost!  But this time was different.  Let me explain.

I attend a Bible study every Monday night.  I have to be there at 6:00 PM to get my room set up.  Last Monday, as I was getting ready to leave, I could not find the garage door opener remote control.  This is a big issue, because, without it, I cannot open the garage door!  Remember, I live in an "over 55" apartment complex.  The garage is not connected to my home.  The door does not have keys, and the only way to open it is with the remote control.  Looking at that, maybe the management needs to look for an alternative.  I can't be the only person in this complex with memory issues!  Can I?  In any case, I had not used the remote control since we returned from Church on Sunday afternoon.  I do have a "place" where I always store the remote control, so I know where it is.  I have this system for everything.  My routine is very important to me.  But, this time, the remote control was not in it's appointed place.  My wife and I search all over the apartment.  In coat pockets, pants pockets, on the floor of my closet,  in the mail box, on the ground between the apartment and the garage, everywhere we could think of.  No remote control for the garage door opener.  Thankfully, my nephew was visiting and he offered me his rental car.  Yes, I still drive!  And well, I might add.  I made it to Bible study on time, but flustered.  The evening was "off" because of this disruption.  While I was gone, my wife and my nephew again searched the apartment.  Still, no remote control.  Upon my return, I looked again  in places I knew I was the day before, or really, places I thought I might have been since I really don't remember what I do from day to day.  After all this searching, being very overwhelmed with the loss of this device, I resigned myself to the fact that I would have to purchase a new one and have the management program it.  A few hours later, my wife asked me to get an extension cord out of the linen closet.  In my search for the extension cord, which we store in a plastic storage box in the bottom of the linen closet, along with the light bulbs, I discovered the remote control, in an open light bulb box!  I do not remember being in that box on Sunday or Monday.  I did not change any light bulbs that I, nor my wife, remember.  But, just the same, there it was.  I was relieved and frightened at the same time.  You see, this heralds the progression of my disease to a more troublesome level.  Yes, it was the first time, that I remember, putting something in a place it clearly does not belong.  But just the same, that is exactly what I did.

I have had a couple of days to forget what happened, and I am no longer upset over this event.  But, I am wary and I realize this will not be the last time.  However, I bet my wife looks in that plastic container the next time I mis-place something!