Friday, February 12, 2016

More on the Neurologist visit.

I cannot tell you how emotional it is for me that the neurologist I see finally greed that I had LBD!  Dr. Bowles in Norfolk, Virginia and the University of Virginia saw it and diagnosed LBD.  But, still, since we lived in Pensacola, this is the first time I have had agreement from my now, only neurologist.

Now, I don't have to do the kabuki dance overtime I visit him.  What a relief.  I was tired of the fight.  An appointment ago, he moved my legs and said: "Your legs are very stiff."  I wanted to say; "no shit Sherlock!"  But it was early in the day so I could control myself.  Now, he freely admits all my issues are from Lewy Body Dementia.  I feel relieved, vindicated, and free!

So, from now on, the neurologist and I are on the same sheet of music.  Nice!  Of course, this journey is headed towards the end.  I am past the crescendo and headed towards the finale.  Even my wife admits that, in her own way.  But, I am at peace with my life and happy now.  My fight for recognition is over.   This is the best I have felt in a long time.  Funny how other people's attitudes towards me impact how I fell about myself.  So many people told me I was not sick and I have even been told I was faking it!  I knew I was impacted by LBD, but I could not convince outsiders and even the first neurologist I had when we moved to East Lower Alabama.  Now at least, my neurologist agrees with my doctors in Virginia and as far as the outsiders go.  Well, they will just have to remain outsiders to me.

Thursday, February 11, 2016

The latest Neurologist visit

Today was one follow up visit with the neurologist.  You may remember, he ordered a MRI on my back to see if there was any mechanical issues causing my leg stiffness and my walking issues.  As I thought, there was no mechanical issues.  I do have arthritis and some disc protrusion, most likely cause by my career as a Gunner's Mate.  Moving thousands of rounds of ammo has that effect!

He is going to up a prescription I take at night to help with my anger.  I openly discussed my anger issues with him and brought out the time this week I made a fist towards my wife!  That was hard for me to express because I had not told Linda and I know it medically marks me as possibly violent.  But, it is the truth!  SO it needed to be out in the open.

 But the most striking thing about this appointment was caught by my wife, not me.  She said: "Did you notice the doctor did not try to tell you you did not have LBD?   Instead, he said these issues were part of the progression of the LBD."

While that might be disconcerting to some, It is a answer to prayer for me.  No more fighting to justify my symptoms.  Now, the neurologist and I are on the same page.  That has been a long time coming.

Now, all three of us admit my LBD is progressing faster.  This permits us to address things in a more realistic manner.  I am happy.

Tuesday, February 9, 2016


Every Tuesday, Jerry and I talk for an hour.  Truthfully, that is the best hour of my week.  Jerry is the only friend that I talk to on a regular basis.  Others call occasionally and I appreciate their calls too.  But Jerry and I have a Tuesday appointment, every week.  

I can tell Jerry anything.  He is a true friend and confidant.  These calls are a mental release for me and I hope he gets the same impact as I do.   

There is no one that I trust more than Jerry.   As the Bible verse says, He is closer than a brother.

Since we have lived here at the CCRC community, I have made man acquaintances, but no real friends.  I may be too Enlisted or too opinionated for them.  Too bad for them.  I am not about to change any time soon!

So, as long as the telephone works, I will survive, because of Jerry, being there for me.  Thanks!

Spotlighting, Part Two. How do you know?

I was thinking, how would you know I am "Spotlighting"?  Here is the answer;  In a conversation, I am likely to say;  Oh, I read that.  Or;  Yes, I know that.  If I am not disagreeing or adding information to the conversation, I am most likely, "Spotlighting" or pretending to be normal.

Before LBD, I could bring up ten other sources on any subject I was interested in and five sources on things I had no interest in.  I could debate a person on any topic and hold my own.  Now, I mostly agree.  Why, because I am just trying to be a part of the world around me.  The idea is, I have nothing to add because I am not engaged in the conversation or situation.  I am lost!  But I don't want you to know.

Now, when I am not "Spotlighting" I am normally either introspective and say very little or very agitated and being very loud, verbose, and foul!  Hey, it is the truth and I know it.   But, I want everyone else to know it.  That way, you will understand us more.  

Nights are my bad time, will she ever learn?

Yesterday was a relaxing day.  My wife had some things to do related to her Bible Study, but she didn't.  We took a nap, and when we got up, my wife was hyper-active about getting the taxes done.  So, after dinner, we did our taxes on Turbo Tax.  She wanted to learn how to use Turbo Tax and we worked on it together.  Trust me, a blind man on a galloping horse could use Turbo Tax.  My wife tried to make it a monumental undertaking and questioned everything the Tax program and I did.  Then, I needed the amount we pay here at the CCRC ever month, and she tore the house up frantically looking for that information.  I kept telling her it was no issue, I could get it in the morning from accounting.  But, she had t find in right then and there.

After the taxes were complete, she bounced and ran around the apartment for three hours sorting out piles of papers, shredding, and then baking a coffee cake!  While each minute of hyper-activity pushed me closer to madness!   I could feel my heart racing in my chest and all I was doing is trying to watch television.

Everything has to be done exactly the way my wife wants it to be done.  There is no room for differing opinions.   Before LBD, she did not openly challenge me, but her way was still the only way.  Now, she challenges me on everything.  Unless I mimic what she says, I am wrong.  I have learned to live with this, but my ability to "suck it up" is almost gone, as this even shows.

Then came clean up from the baking time.  And of course, the dogs wanted out.  Then I had a few papers to shred.  And while walking out of the room that has the shredder, my wife tried to walk in that room, and I felt a small urge to knock her out.

I did not say or do anything.  But the urge was there and I actually made a fist of my right hand.  I let it pass and I have said nothing to her.

Nights are the most difficult time.  I have explained this many times, in every way that I can, to no avail.   I have never used violence against my wife.  But last night, in my agitated state, and my control ability stressed beyond it's limits, I felt that urge!

I don't care if I had a nap, I do bad at night and a calm, quiet, stress free environment is what I need.  I have discussed this, calmly with my wife, numerous times, to no avail.   I have discussed, with my wife,  moving me to Assisted Living or a memory support facility, and
I believe the necessity to do this is drawing near, soon.

Again, I write this blog to inform others about how my LBD journey is progressing.  And I have said that my LBD journey is picking up speed and intensity.   The events of last nigh only serve to illustrate that fact even more.

Sunday, February 7, 2016


"Spotlighting" is a common issue with Lewy Body Dementia patients. Understanding "Spotlighting" is very important for the caregiver and people that are friends of LBD patients.  For the uninitiated, the question is; What is "Spotlighting"?

Simply put, there are two of me.  I have two personalities at any given time, depending on who is with me, what is happening around me, and where I am.

In my home, with my wife, only; my symptoms come to the forefront. When a friend or another visitor is in the apartment, I feel the requirement to be my best.  Now, the secret of "spotlighting."  I am no better, no more alert, and my cognitive skills are no better when I am "Spotlighting".   I just hide my symptoms!  I am still lost, confused, angry, and agitated.

I have read on other blogs that LBD patients exhibit "Spotlighting" during doctor's visits, to the dismay of the caregiver.   I try very hard not to do that, since Neurologists are so unbelieving and skeptical of LBD patients!

Another thing that induces "Spotlighting" is tension, at least in my case.  When there is an issue, argument, confrontation, I become very soft, apologetic, and respectful, to the people around me.  That is directly opposite of the way I was before LBD.  Remember, I am a Master Chief Gunner's Mate and being quiet in the face of a serious situation could be your death.  I had to be in charge, and no one could question that!  And they never did!!  But, now, LBD and spotlighting, turns me into Melvin Milk Toast, when things go wrong.    But, inside me, everything is churning, on fire, and angry.

Why do I react this way?  I believe it is a self-defense mechanism.   I do not want to loose the limited amount of freedom I have.

So, when your LBD patient acts totally different when his friends come to visit, don't get angry.  Just enjoy the time.  He will go back to normal after the visit is over.

I walk around Azalea Trace and take to people, smile, ask them how they are doing, and even comment on how they look.  People tell me I do not show any symptoms of LBD and I must be wrong in the diagnosis.   I am learning to accept that attitude.  They don't see me when I am not "Spotlighting".

Another interesting thing.   Early in my journey, when I was still working, a good friend that really was the BRAINS of the branch I managed, noticed the changes in my mental abilities.  After I was granted my disability retirement, Don told me, he noticed my symptoms very early.  Then he listed all the symptoms he noticed!  Don and I were very good friends and I was very comfortable with him.  So, I never "Spotlighted" around him.

One other point.  "Spotlighting" is not voluntary in the case of the LBD patient.  We do not turn it on and off.  We are not in control of it. Instead, it is a symptom of the disease.   Instead it is a sub-conscience action that I cant understand.  But, I have read enough from the medical world and from other LBD caregivers to help me understand that I am normal in my "Spotlighting".

So, the next time your LBD patient acts normal when the grand kids come over, be patient.  He is not in control of his "spotlighting" anymore than he is in control of his fluctuating Blood Pressure.

Saturday, February 6, 2016

Good days and bad days

I have written before that I dread good days.  The days that I feel good, almost normal, and that things seem to be going better.  I had a few of them this week, two or three days of feeling pretty good.  I knew I would pay for them, in Spades!  But, those good days fooled me.  Then today dawned and I realized it was payment day.

My wife had a number of chores planned for today.  We needed to get the car ready for  trip she is taking so we had the car serviced at the Subaru Dealer.  Then to the Vet for some heart medicine for Marcel, the to the pet store for food, and then to Walmart for some other things.  The Vet's office was FULL of barking, sniffing, loud, dogs.  Old dogs, puppies, big dogs, small dogs, and all the excitement that comes with them.  The pet store was having an adoption event!!  More excited, loud, barking dogs and more people than I ever want to see gain!!  We came home and I took a nap.

Now, my wife is intently watching the Republican Debate and I am in the office, listening to Gospel music on my earphones.  I am overwhelmed with depression and anger.  I cannot figure out tomorrow.  I have no thought process that makes sense!  One minute, I desperately want to move back to Virginia Beach, the next I want to move into Assisted Living.  Then, I want to move to a memory support unit.  Next, I am thinking about buying a house!  See what I mean?!  

I used to have a very logical mind.  Step by step planning that made logical, budgetary, sense.  Now, I am lost in opposing thoughts.  This truly is a maddening disease and I now, officially, hate it.

I am truly lost inside my own mind!  I do not discuss these disconnected thoughts with my wife.  She would be overwhelmed with them.  I have no one to talk to here at Azalea.  My Pastor is a good man who truly tries to help me.  But, he is young and knows little about LBD.  And, he is busy with a growing, young, congregation!   So, we get together for lunch every couple of months.  I cannot and will not ask more of him.

That little rabbit trail shows my wandering mind.  But this will really illustrate my lostness.  My Brother died 23 December.  But, every couple of days, I want to call him.  Then, it hits me, again, Sonny died!!  And the emotions of his death, and the death of my parents and shipmates run over me like a train!

Today, I got my Fleet Reserve Association magazine.   I always read the obituaries.  For the last 20 years, I have seen the Obits for old shipmates.  Today, it hit me;  There was no one I knew!  Why because they mostly are all dead.  I still have Jerry, Doc Wolf, and Dave Flippo, thank God.

This has been a tough day and I hope this disconnected post illustrates that.  I think I will listen t George Jones for a while.  He died too.