Wednesday, December 30, 2015

Rough Christmas season!

I never have done well during the Christmas Holidays.  This year, was even worse.  Maybe the most difficult Christmas of my life.   I have been deeply depressed and upset.  I thought I was going to be OK and then my Sister called on 23 December and tole me our Brother was in the Hospital and not expected to live.  He died Christmas Eve morning.   He and I had just reconnected recently because his Wife is dealing with Stage 4 Cancer.  He and I had some great, loving, supportive, conversations.  I even had an opportunity to talk to him about Jesus and the relationship required with Him to go to Heaven.  I am sure he was Saved and I am sure he is in Heaven with Jesus, right now!  I miss Him and I know his family does also.  But, knowing this is a comfort.

My childhood memories of Christmas are not the sweet memories most children have.  Why, is not important.

I have been so upset, I made an appointment with my Psychologist for this Monday.  Also, I have tried to write this post a number of times since Christmas.  But it is difficult to describe how I am doing or why I feel like I do.

Before LBD, I had defensive ways to deal with this time of the year including heavy drinking.  But now, I do not drink, I pray.  And now, the disease has taken away my defensive ways and I am stuck thinking about the things that bother me, almost 24/7.   When I go to bed, my mind goes to the past, the difficult times, and where I am now, dealing with LBD.  Then, my mind goes to ways to run from this situation, but to where, and how.  I cannot logically deal with my emotions.

I do not see a future for me.  Well, except....


Tuesday, December 22, 2015

Holiday stress equals Holiday deaths!

I saw a statistic that more people die during the Christmas- New Year Holiday that any other period of the year.  Stress is a major contributor to that statistic.  But, it is even more difficult for those who have Dementia of any type.

I have never enjoyed Christmas.  Even as a child it was terribly painful for me.  Not that I did not get many wonderful presents.  But that I always was aware that I was the only person in the room with my last name!   No one had to say that, I knew and it hurt.

I have never recovered or dealt with that pain and it had carried on through my life.  Now today, all my depressing thoughts are magnified by the LBD!   Then there are the new mental "boogie men"  that haunt me all the time.  Things like noise, the direction of our nation, my wife's compulsive nature, financial issues, and all my failures of the past.  Then there are the memories and thought of those who have gone on before us.  Our grandparents, parents, friends, shipmates, and school mates.

So, while stress is always with my, it is magnified manifold during this time of the year.  That super multiplied stress can be reflected in higher blood pressure that can lead to strokes and heart attacks.

Then there are suicides.   People with Dementia's of any type are much more susceptible to the mental breakdown that leads to suicide.   The hustle and bustle of the Christmas-New Year Holiday period is crushing for those with normal mental coping skills.  For those with Dementia, and I speak from experience, the hustle and bustle is crippling!  

The other issue is that those without Dementia DO NOT UNDERSTAND what the Dementia sufferer is experiencing.  They bang and clang around, pushing their own agenda without respect or consideration for the one who is unable to deal with all the confusion and drama.  And, since those of us with Dementia, or at least me, are always trying to control they emotions because if we loose control, we will end up in a facility that limits our freedom to what we take in or coffee, we don't say anything about how things are impacting us, until we either explode or retreat into our safe room, whether that is a real room or a mental breakdown that leads to social withdrawal.

While I have not discussed this with anyone, and I do not want to either, I am experiencing issues with dealing with every one's personal agendas and drama.  Look, if something does not go exactly right, the world will not end.  Everything is fixable.  So why stress about things!  Your stress makes me incredibly upset, and I hold that in!

I have said before that I had entered the Second Half of my LBD journey.  I need to add to that and tell you I am late in the Third Quarter.  Linda and I have seen a number of changes and symptoms getting worse.  I am experiencing more instability.  My emotional roller coaster is not off the chart.   Even though she sees and observes these changes, and she does understand them, the still lives in denial!  She loves me and wants me to be me, forever.  To think in any other manner for her is inconceivable.  I love that is her and I understand her emotions on this.  But, the truth is the truth.

So, while this is a bumpy, depressing, time of the year for me, this one is exponentially worse.  I am not surprised.  I expected this.  But, that does not make is easier for me or Linda.  

I don't know what else I can say.

Saturday, December 19, 2015

A quilt of love!

My Daughter in Law, her Sisters, Janie and Suzette, and their Quilt Guild here in Pensacola honored me with a Veteran's Quilt today!  The quilt is simply beautiful, perfect, and I am sure it will keep me warm.  But, their unselfish, loving actions, the thoughtful presentation, and their warm smiles and hugs, will remain with me, strengthen me, and cheer me, all the days of my life and I wish to be buried with that quilt when the time comes.  Simply said, what they did for me means that much to me.  No words can ever express my gratitude, love, and admiration of these ladies, especially Juliette, Suzette, and Janie.

Today was a very special day!

Friday, December 18, 2015

Who is there to help me?

Since we retired, we have had a steady run of income reductions caused by the Federal Government.  For instance, OPM overpaid me for a year.  I kept telling them, but to no avail.  Then, THEY discovered the overpayment and all the sudden I was a dirty no good!  They docked me half of my reduced to normal retirement pay for three years!

Last year, we moved into Azalea Trace.  It is a continuing care retirement community to provide for our future health needs.  We took the entrance fee money out of my IRA.  That counts as income, so, this year, we have to pay $700+ more in Medicare Part B payments because we made too much last year.  I appealed, stating that it was a one year spike and provided the required documentation.   The Social Security Administration said, tough!!  You have to pay the $700 increase!!

Then, there is my ongoing appeal with the Veteran's Administration.  An appeal that will most likely never end.  Or, will end without me going the compensation I believe I deserve.

So now, out monthly budget is in shambles!  And I am upset, depressed, and overwhelmed.  There is no representative to turn too.  Our Congressman is worthless.  His name is Miller and he has yet to help me in anyway or even answer any questions I have sent him.

And before you yell at me, I have committed this to the Lord in Prayer.  Much Prayer!!  And I totally trust God to provide for us.  In the past, God has enabled me to make the way ahead.  Promotions, pay raises, extra jobs.  Now, I am helpless!!  I cannot go get a part time job, or ask for a pay raise.  And the President has decided, through manipulation of inflation numbers, to deny us COLA's on Social Security or Military Retirement.

This is a difficult time for us, and for me specially.  I am at the weakest I have ever been in my entire adult life.  So, I am upset and lost.

Still, I trust God for everything.  So, I will rebound.  One way or the other.

Thursday, December 17, 2015

My measure of decline

In any endeavor, it is imperative to have a measure of success.  Sports teams have statistics like Batting Average or Win/Loss records.  It is good to measure where you were and where you are now.  It is the same in the journey with LBD.  But, I find it difficult to quantify the progression of my disease simply because I don't remember even when this started.

Yesterday, the Staff Chaplain asked me to stand in for him at his Thursday Bible Study.  He has been dealing with an upper respiratory infection for ten days now.  Naturally, I said yes.

In my preparation for that Bible Study, I was looking through some of my past Sermons and Bible Study notes.  I was shocked at the quality of studies I produced two years ago.  I know that because I always date my work.  The two year old studies were very well written, researched, and organized.  Surprising to me, they look scholarly!

Compared to what I produced for last Tuesday's Church Service for the Skilled Care folks,  my writing and research skills of today are child like!

I have not ever done a comparison of my Bible study work.   But, this look back clearly shows the progression of my disease on my cognitive processes.  The work of exactly two yeas ago is organized, concise, and logical.  What I did just this week has no flow and reaches no apparent conclusion.

I would have never though of doing this comparison.  It happened because of circumstances but to me, it is a very valuable measure of my progression in my journey with LBD.  I realize exact measures are difficult in Lewy Body Dementia due to the sine wave progression of the disease.  Yet, this comparison clearly shows a negative direction in my cognitive skills.

It also upset me and frightened me since I now can see clearly, where I was and where I am now.  In addition, it casts a dark shadow on where I am going and how fast I am going to get there.

Wednesday, December 16, 2015

The highs and lows of Lewy Body Dementia are maddening!

Today, I have experienced gleeful emotional highs and now that the sun has set, gloomy, deep, depressed, emotional lows.  It is interesting to experience when you are experiencing an emotional high point.  When you feel like you are almost firing on all Eight Cylinders!  You feel great.  Life looks good.  You even make plans to have fun, visit someone, or do something you like.  Then, the pendulum swings and you are stuck in a pool of doom and gloom.  You do not want to do anything, talk, or be around anyone.  Noise is cutting, and you have difficulty finding the strength and energy to go on.

Many times, when I am experiencing the lows of LBD, I hide in bed.  The darkness of the room, the comfort of my bed, the warmth of the covers, make a cocoon to hide in.

Also, during these low times, all the other issues that LBD causes are worse, brought to the forefront, and amplified.  Tonight, I am having great difficulty focusing on anything.  I am foggy, disconnected, and unable to focus.  My leg muscles are sore, stiff, and my mobility is impaired.

As I wrote earlier, this morning I was very disconnected and had in my mind that I needed a telephone number to eat Raisin Bran.  Then the day got better and I was pretty much OK.  But now, I am again confused and conflicted.

This, in my opinion, is the most drastic portion of LBD.

Friday, December 11, 2015

Filter Failure!

Today, a very left will, liberal, progressive, member of our retirement community, who has NEVER had a job except academia, questioned me about gun control as related to the Presidency.  I calmly educated this single minded slob that the Founding Fathers put the Second Amendment into the Constitution to ensure we were citizens and not subjects.  In other words, if the President went off the tracks the populace would be able to dethrone the self imposed king.  I also educated him on the way the Founding Fathers did NOT include "Obey the orders of the President of the United States.." in the Military Officer's Oath of office but did include that in the Enlisted persons Oath of Enlistment!  The reason is the same as the reason for the Second Amendment.  They wanted the "Landed Gentry" that were and are the Officer Corp to be able to dethrone the self imposed king without violating their Oath of Service.

He then brought this, up to then civil, discourse to dethroning a President Trump!!   I said it applaud to any President including the current President.  This mindless follower of the Socialist Party named  the Democrat Party, then went on to repeat all the talking points of how Great the Muslim Emperor is!!

That was when my social filters failed, BIG TIME!!  We were in the pharmacy and the lady who staffs the pharmacy is a wonderful individual and a good Christian lady.  I did everything I could to control my profanity.  I am not sure if I succeeded because I was in a blind rage.

I spent 40 years of my life serving our Nation, doing whatever the Country's Leadership told me to do.  I offered them my experience, my opinion, and my abilities.   But, after the discussion was over, I did what I was told.  This pies of garbage did nothing for this Nation and has poisoned the minds of many young people.

But moreover, I am very tired of the direction the Puppet Masters behind the curtain are taking our nation.  I believe the majority of Americans are silent about how they think the nation should move.  And their silence permits this takeover of our country by individuals whose only desire is to turn this nation into a Socialist prison where only those in power live a good life and the rest of us are enslaved SUBJECTS to them.

Furthermore, I am tired of being quiet over my disgust!!  So, that coupled with my disdain for this jerk and my filters failed.  It took ,e three hours in bed this afternoon to even get me to a point that I wanted to get up or talk to even my wife.

Now, to the LBD issues.  I am loosing my ability to suffer fools and someday, very soon, my filter failure may be be even more drastic.  I try not to watch or listen to politics on the television but my wife insists on watching politics on television.  So, she is causing some of my issues.

I have always been a fiery, hotheaded, loud, individual when it came to subjects I where I was passionate.  I have a very sharp division between  right and wrong.  And I will fight to ensure what I believe is right will prevail, regardless of any loss I might suffer.  But, I also had the ability to curb my actions and statements when I knew other would be harmed by my actions.  Now, that filter is not there.

Maybe I will move to a small house on a big piece of land and be a hermit!

Thursday, December 3, 2015

What I learned from Robin Williams

I wrote before that I read the article in People about Robin Williams' death as described by his wife.  She said he was having great difficulty  dealing with his perspective that he was loosing his mind!

I can identify with Mr. Williams on that point.  So many things have happened to me since I was first diagnosed with Lewy Body Dementia.   For instance, the incident when I was dreaming I was in a fight and I hit the fellow I needed too.  It turned out I hit my Wife, and drove her across the bed!!  Thankfully, she had her back turned to me, so I hit the back of her head!  It could have been much work.  That was caused by REM Sleep disorder caused by the Lewy Bodies messing with that portion of my brain that paralyzed me when I sleep.

Hallucinations are another symptom that are difficult to deal with.   I tell people I use my miniature poodles as my Hallucination Checkers.  If they do not bark, I do not worry.  But, truly, each hallucination bothers me because it reinforces my belief that I am loosing control or my mental functions.

Nothing in my life is as it was before LBD!  For instance, I do not drive any more.  We finally gave in and applied for a Handicapped Parking Permit.  I have difficulty finding words and conveying my thoughts.  I have stability issues.  The fun things of life are gone because either I cannot do them, or I do not want to do them.

I used to be a self assured professional who had the answer to most things.  I was in charge during very dangerous times with live ordnance on Navy Ships.  Now, the most dangerous thing I do is pass gas!!  Trust me, that is a brave thing to do for me.

Another issues in the thoughts that permeate my mind.  My thoughts move from Navy, to survivalist, to Assisted Living.  I can never keep a single thought in my mind, especially in the evening.  I truly do not have control of my thought process.

I have written before about the anxiety, anger, depression issues.  They also illustrate how LBD has taken over my mind and my life.

Mr. Williams decided to end his life because he could not deal with the loos of mental control.  I do not believe I will take that course.  Instead, I want to see this disease to the end, just because I am still interested in how this turns out.

Just the same, the loss of everything in my life that represented what and who I was has shook me to my core.  So, it appears Robin Williams and I were impacted by the same issues.   We just decided to take different paths to deal with them.  Sad but interesting.

Tuesday, December 1, 2015

A week in the Doctor's office

This is my week of medical appointments made longer because my neurologist just woke up and found out I have Lewy Body Dementia and I have Stiff Legs!!  I saw him on Monday.

He was amazed at how stiff my legs were and how that stiffness causes me to walk with weird leg movements.  So, he has ordered an MRI to determine if there are any physical reasons for my stiffness and weird walking gait.

I could save him the effort and my insurance companies the expense of this MRI by telling them it is the disease that causes this.  If it were physical or skeletal it would have broke by now!  But, medical science is enamored with their electronic devices and so are the insurance companies.  So, into the tube I go, on Thursday!

Then, today I saw my GP, who I really like.  She truly cares about me and for me.  This appointment was a normal, 3 month check up.  All my blood work looked good, and we mostly talked about the progression of my LBD.

We spent a long time discussing the impact of anxiety, depression, and the feeling of being worthless that I deal with everyday.  I had read an article in People about Robin Williams and how Lewy Body Dementia impacted him.   In the article, his wife said he was afraid he was loosing his mind!  He was always suffering from anxiety and depression.  He saw hallucinations and had difficulty discussing his issues and the world as he saw it.

Heck, that is how I feel everyday!!  But, it was enlightening for me to read what he experienced and knowing that he and I walked the same path.  Robin Williams committed suicide n=because he could not deal with his issues.  I understand that.  And my GP went to great ends to explain he had mental issues all his life.  I know that.  So have I.  But I don not intend to commit suicide.  Just the same, as a person without faith in God, what did he have to loose except a tortured existence.

Oh well, tomorrow, I have nothing to do,  Thursday it is in the "Tube", and Friday Azalea Trace will keep me busy.  I think I need to go back to work to get some rest!  

Saturday, November 28, 2015

What I miss the most

It is the Christmas season.  A part of the year that makes me more melancholy that happy.  Actually, I find Christmas and New Years depressing beyond description.  And the older I get, the worse it gets.

Christmas makes me think about my past.  My few successes and my many failures.  I think of old friends and Shipmates, most of whom are now dead.  Those thoughts bring back good and bad times.  But they were good times with friends that I depended on and them on me.  Those were great times that warm my soul.

I miss being a Chief.  The times in the Chief's Mess.  The fellowship, friendship, working together towards a common goal, and blowing off steam doing less than smart things!!  It was fun!!  Or at least, it was then.

I miss being dependent on fellow professionals and them being dependent on me.   I even miss the arguments that arose in the Chief's Mess about the most ridicules things.  I just miss being a Navy Chief.

I never really fit in the civilian world.  I tried it and I did not like it.  So, I went to work for the Navy as a Civil Servant.   There, I could use what I learned to serve the Navy I loved.

I screwed up when I retired from the Navy.  I got caught up in my own self-importance.  The most stupid decision I ever made was becoming a Command Master Chief and then a Force Master Chief.  It was not a fit for my personality, my career goals, or my happiness.  I remember looking in the mirror, when I was the CMC on the USS Caron, and NOT recognizing myself!!  I should have went back to being a Gunner's Mate then.  I remember the Bible verse that says;  "Pride goeth before a fall."  It certainly did.

Now, I am a broken, bitter, depressed, old man, without anything of value to do, nothing to offer, and no way to change my lot in life.  I dream about the Navy.  Every facet of the Navy life.  Sometimes I escape to my Navy life in my mind during the day.

I live in a wonderful Continuing Care Retirement Community filled with rich, landed gentry.  There are a few successful retired Navy folks here.  They try to act like like they are something else.  Folks like me call that "Uppity"!  I act like a Retired Navy Master Chief.  Hey, it works for me.

I never thought I would live this long.  I never thought I would have Lewy Body Dementia, and I never thought I would end up like this.  I failed myself!!  Yes, I succeeded, but that success did not serve me well.  I would give everything up that I have to be a Chief Gunner's Mate on a MK 42 equipped Destroyer type Navy ship, sailing in harm's way.  Instead, I am here.

I guess I miss my life the most.  That about says it all.

Reposted from "The Master Chief's Lair"

Wednesday, November 25, 2015

I have never been afraid of anything, until now.

I truly have not been afraid of many things.  And, I learned early to never let anyone know what you are afraid of.  Giving into fear only paralyzes you and prevents you from accomplishing your goals.

I also have written before about my neurologist in Virginia Beach.  She was tenacious and dedicated.  She asked me if I had dealt with the reality of my disease.  Of course I said YES!   She immediately said; "No!  You haven't!" and she was right.  As a matter of fact, even though I thought I had dealt with the realities of LBD before, I just now HAVE honestly dealt with these issues.

You see, I now know I am afraid to die!   No, I am not afraid of my destination after I take my last breath on this earth.  I am Heaven bound because of the Finished Work of Jesus Christ on the Cross!!

No, I am afraid of the process of death.  It is something I have never done.  So, I am afraid of the unknown.  And, since the disease has progressed to the point of completely dominating my life, I now realize what my Neurologist meant when she asked me if I have dealt with my disease.  I am going to die.  And not a long time from now, but sooner, rather than later.  If the disease progresses next year as much as it did this year, I will be in bad shape next year.  Not something I am prepared to deal with.  But something I must face head on.

Back to my management of fear.  I cannot let those close to me that I am afraid of this.  Yes, they now know because they read this blog.  But, that is why I am writing this.  Because I do not know any other way to tell them.  Remember, I never let anyone know I am afraid of anything!

So, there you have it.  This maybe the first time I honestly admitted, openly and honestly, that I was afraid.   Do I feel less of a man?  No more that Lewy Body Dementia had made me.  No, as I digest this, I feel better that I have openly said what I said.  Now I have to deal with every one's reaction.

Sunday, November 22, 2015

Thanksgiving is my favorite holiday

Thanksgiving in my favorite Holiday.  It is the day I met my Wife.  It is a day my Mom and Dad ate Thanksgiving diner on the USS Stein (DE 1065) with my Wife and me after I came home from our Vietnam deployment.   Thanksgiving, if celebrated correctly, can connect us to God's intention for us that we live our lives being thankful to our Creator, for everything in our lives, and everything in the World.  From the simplest single cell organism to the most complex machine.  God created everything, for His Glory!  That is what Thanksgiving Day should be centered around.

This Thanksgiving, I am very thankful for God's grace in my life.  I have Lewy Body Dementia and it has progressed more this year that any year before.  On the surface, that frightens me.  But, taking a more prospective view, it has been a slow progression up to this year.  That is a blessing.   Yet, I know the disease will not slow down again, so this next year will be even more challenging.

Speaking of my days on Navy ships, like the USS Stein.  Recent discussions on this blog have discussed courage.  I have faced my experiences with LBD the same way I faced danger in the Navy.  Trust me, it is dangerous to be a Sailor on a Combat Ship of any type.  Ammunition, mooring lines, swinging water tight doors, hatches, and scuttles, moving equipment, replenishment at sea, all done on a ship that is rolling and pitching, with wet decks, many times in the dark, and all the time being tired from long hours on watch and longer hours doing your professional job.  The bottom line is, I chose to run, face first, into the challenges of the U.S. Navy!  I tried to never show my fear.  As I promoted into Leadership positions, gun mounts that failed to fire, broke live ordnance into large pieces and turned equipment designed to move heavy ammunition quickly into the gun bore into unrecognizable shapes, all became a normal part of my life.  But all of these things and experiences could be learned, improved on, and passed on to others.

My experience with Lewy Body Dementia is something I am trying to pass on to others. But not to make them better but to make their experience better.    But, I cannot get better at having the disease or learn to do this better.  Instead, I have learned quickly that I cannot beat Lewy.  It beats me at every turn.  I have never been overwhelmed by something in my life like I am by this disease.  I always knew I would be defeated by LBD.  But now, I know, I have already lost.  That is where I am not courageous.  If I were, I would continue to fight.  And I did fight for the first years.  But now, I do not have the energy or desire to fight this disease.

I have no idea when God will take me home.  I do know He is in charge.  My life was planned by Him before I was formed in my Mother's womb.   Lewy Body Dementia was in that plan.  I will not try to change God's plan for my life.  I will try to serve Him as long as He enables me to.  When God is done with me, I will go home.

 


Saturday, November 21, 2015

Last night...

After my post last might, I sat in my recliner quietly, surfing the web, and slowly calming down.  My wife asked me how I was doing around 11PM and I said; "Better".   She then asked me what cause my issue and for some reason, I felt safe in explaining it to her.

She was very attentive and then she said;  "You have to tell me these things."   I told her that I never tell her because she would get upset at me. She explained that if I tell her, she can try to change her behavior that is causing me issues!  That was refreshing, since I still have scars from the bite marks cause my previous statements.

I guess I will try to tell her when she is doing something that negatively impacts me, in soft, polite, manner.  I agree that she cannot change something if I do not tell her about it.  Makes sense.

Communication is always better than quiet brooding.

Friday, November 20, 2015

Somedays, we do too much

We seem to have a difficult time judging how much is too much as far as outings and doing things, for me.  For instance, we rode the bus to the Commissary today as we normally do in Wednesday.  Then, after putting the groceries away, I had physical therapy.  After that, we went  to a few stores to purchase some things to stuff a Samaritan's Purse Christmas Box.  On the way home, I became overwhelmed and extremely grumpy!

We ate dinner and then my wife started in on her immediate requirement of getting the Samaritan's Purse packed in the provided box.  This is not due until Sunday morning at Church.  But, for her, it HAD to be done right then and there!   So, even though I am mentally exhausted, I have to chew my tongue and do what she wants.  Peace is better than arguments.

After that, I wanted to go to bed.  But, I stayed up and I am finally relaxing after sitting here in my recliner for three hours, surfing the web, and ignoring everything around me.  Another thing is, my Wife's mind never quits.  She analyzes everything.  She plays the " What would have happened if" game and it drives me crazy.  Who cares what could have happened on a TV Game show.  I truly do not care and the constant mental exercise of reviewing things drives me mad. Oh, and then there is the constant drone of politics on the TV.  I have told you before how that annoys me.  She just does not seem to understand how these things effect me.  I have told her and she reads my blog from time to time, so she knows how I feel.  I avoid things that annoy her.

Look, I realize, as most of you do, that I have real difficulties as the sun goes down.  And these issues are getting worse, fast.  This winter is my most intense sundowning time.   The things that effect me stay the same.  They have not changed.  So, why do I fight the same issues every night.

The bottom line is, I am difficult to be around because of LBD.  But, it is not my fault and I need help to even stay on a even keel.  

Tuesday, November 17, 2015

Courageous? Not me, I am scared out of my wits!

Someone sent me a comment thanking me for being so courageous.  Nothing could be farther from the truth.  And if I portray myself as brave or courageous as I face LBD, forgive me, because I am scared to death!

Yes, I write about what is happening to me.  Why, because it helps me deal with my issues and I truly believe it may help others.  But, I am scared over the future.   That is one of the reasons I plan, project, research, and worry so much.  You don't see my tears or my fearful thoughts, especially at night when I am alone with my thoughts.

I was brave, or stupid, either one, when I was a Navy Gunner's Mate and we would have a casualty in the gun mount that would involve ammunition, ready to explode.  Then, my knowledge, training, and wits could help me survive.  Now, there is no survival.  Only a slow decline into oblivion.  And now I know, as I did when I was working around enough explosives to sink my own ship, that only GOD is in control of my life.

Me courageous?  Not really.  But I do helplessly depend on GOD for my future.  I recommend that plan for each of you too.

Saturday, November 14, 2015

Comments from you help me!

I read and post almost every comment you send me on this blog.  Why?  Because there is GREAT value in what all of you have to say.   Many of you are caregivers and some are patients with LBD or another form of Dementia.   I have written before that we are a "Support Group" unto ourselves.  I hope you read the comments of others, they offer another unique, important, factual, point of view of this journey.

I borrowed from President Reagan when he told America he had Alzheimer's.  He said, he was involved in  "the long good bye"!   He was right.  But this is also a journey through many changes, valleys, mountains and storms.  Sometimes  we have quiet waters, but we know, soon a new storm will overwhelm us.

I have learned to embrace and enjoy the quiet times of this journey.  The storm will come again and I will not be ready for it.  So there is no need to be apprehensive.   You will never be ready to face the challenges and you will never be strong enough to defeat them!  That was the hardest lesson I had to learn on this journey!  And my Wife has not yet given into that truth!  She still thinks we can fight and win.   But, we cannot and in this case, resistance IS futile!!

Another comment from you that makes me feel good is that "You Believe that I really am sick'!  So many times, I have been told I am not sick, and many treat me like a fake or a malingerer.  I know you see this in your lives, but it helps me to receive your support.

Last week, my Wife and I had an emotional conversation about how I was feeling and doing.  I said I wished we had a support group for those of us with Dementia.  She went to the Nursing Administer here at Azalea Trace.  She really liked that idea and we spent about 30 minutes fleshing out this idea.  For instance, I would like to see, be in, and experience, the "Memory Support" area BEFORE  I am bad enough to move in there!  I want to meet the staff and get to know them.  They should NOT be strangers to me, but familiar people I trust.  This alone would make that transfer easier.

Another thought I had related to my Navy career.  Before each Deployment, we had a series of "Pre-Deployment briefings for the Crew and Dependents.  I view this journey as a Deployment.  So, why not provide me some Pre-Deployment training and familiarization?

I have made a larger that usual downward turn recently.  One reason is, I have quit fighting to stay normal.  I am now comfortable with myself and my disease.   There is no logical reason to spend energy trying to defeat a foe I cannot defeat.  I pray that God gives me an easy transition to Heaven.  That is my only request.

I have been having a rocky journey lately, because of the recent progression of this disease.  I am much more introverted and I stay alone as much as I can.  For instance, while I am in the living room with my Wife, she is watching politics on the Television and I have my Bose Noise killing Earphones on listening to Christian music.  George Jones, Vestal Goodman, Doc Wiseman, and other folks that appear on the Bill Gather tapes.  I am in my own, isolated, world, untouchable by the things that upset me, but still with my Bride.

Please keep your comments coming and I promise I will post as long as I can.  All of you are a blessing to me.  Thanks!!

Tuesday, November 10, 2015

Nights, and how they effect me

We shifted from Daylight Saving Time to Standard Time.  It gets darker much earlier and I get depressed, agitated, and grumpy, much earlier.  That early onset of my "Sun Downing" actually multiplies the effect because there is more time for it to act on me before I go to bed.  Then, I go to bed agitated, and that causes me to think negative thoughts that lead to difficult dreams.

I often get stuck in negative thought processes as I lay down.  Centering on things that might happen or actually have happened, that were or could be tragic.  I then get defensive, upset, and aggressive in my thoughts.  Not a good formula for restful sleep.

I have seen this increase recently.  So has my wife.  Short of more drugs, I do not see this improving.  I have written before about living in a Memory Support facility that isolates me from the outside world and controls my sensory overload.  That seems like a good, comforting idea to me.  Yet, I don't think I am quite there yet.  Soon, but not quite yet.  Yet, one of my nightly thought patterns is to run away from reality.  Either by hitting the road, becoming homeless, careless, and always on the move, or by moving into a facility that shields me from the things that upset me.

For instance, my Wife has the Republican Debate on right now.  Politics completely upsets and anger me.   Now, she should be able to watch anything she wants.  She likes Politics and wants to be informed.  I respect and defend that.  But, the fact is that I cannot deal with the tension, arguing, screaming, and tension of the Political Theater.

How do we deal with this?  I don't know.  But, I know as this disease progressives, I need to be isolated from things that aggravate me.  If we do not, I will loose control of my emotions and a melt down will occur.  I can write that now, not much later in this journey, I will act out this statement, without mental filters or emotional controls and that will lead to me being placed in a controlled environment.  More controlled than I would need if we took preventative measures now.

Just saying.

Friday, November 6, 2015

And another thing!!

The circumstances of my birth, and the fact that people, alive, with hold facts about my Father and Blood related relatives is a great source of frustration and pain for me.  I have blood related brothers and sisters that will not have anything to to with me, even though they have NEVER spoken to me or met me in person.

I know my Mother was pregnant out of wedlock.  That makes me a Bastard.  I know that.  It is not my fault.  My birth Father, Donald Andrew Dolence, of Cleveland Ohio and his parents, my Grand Parents paid my Mother $10,000 to go away and never contact them again.   never saw any of that money and did not know about it until I was 31 years old.  Hell, I never knew my Mother had 3 other children, out of wedlock after me.  Yet, she blamed me for; "sucking the calcium out of her body that resulted n her having bad teeth."  Her words, not mine.

Look, I was blessed to be raised by Mom and Dad Mills.  They did so without compensation and never had legal papers on me until I was 16.  They did a magnificent job raising ma and I will be eternally grateful.  I was a success because of God and their teaching.  But, I would truly love to talk to people actually related to me.

For instance, what health problems did my Father have?  After all, he died at 63!  I don't want they inheritance, as if the Dolence family has an inheritance.  I just want a chance to know them.

Before Lewy Body Dementia, I had a thin=ck skin about this, at least on the outside.  It truly has always hurt on the inside.  But now, I am raw with emotion about o many things. And this is one of the biggies.

I have a half brother, Donald Andrew Dolence Jr, of Westlake Ohio.  If you know him, have him contact me.  I tried and failed.  It is like I am a pariah or something.

You can see how things now get to me.  Or better, how I am now not filtering the things that ALWAYS got to me.  Good old Lewy Body strikes again.


Isolation may be the best place for me

More and more, the world around me infuriates me.  I hate the politics of mutual destruction we see played out on the national stage.  I hate the self-centered way Americans conduct their lives.  I am overwhelmed with anger at the combative attitude of so called minorities when they are in the presence of anyone they deem privileged.  Being out of my little retirement community is overwhelming to my senses, my moral, and my self-control.

Our country and in fact the entire world is in self-destruct mode.  People want a free ride, a hand out, and everything those who worked and sacrificed have earned, without ever lifting a finger or even having a thought about bettering themselves.  This world is broke and I just want to hide from it.

I think that I would be better off in Assisted Living or even a Memory Support unit, isolated from the world, free to live out my life in my own thought process.

Often, a Doctor will ask me if I am suicidal or homicidal.  I often wondered why that question was asked.   I am NOT either of these.  But, I can see where it could be a problem for someone not able to escape from all the issues when your mental capabilities and filters are not functioning properly.   I used to try to solve problems.  Now, I want to avoid them.  I think I will go to bed and hide.

Tuesday, November 3, 2015

Depression...all my dreams are gone

Every night, after the lights are out, and I am in bed, I go through my dreams of a survivalist, concrete home, on 5, 10, 20 acres of land.  Solar power, garden, chickens, independent, and then it hits me, I am never going to be able to do what I used to dream, and I get very depressed, upset, and unhappy.   What I wanted, I will never achieve, because of Lewy Body Dementia.

I guess you could say I am too old for those dreams.  But, 64 is not old!  But there is no way a man with rigid muscles, and a memory like a screen door, who cannot sensibly read, hallucinates, and has sight issues, can live the survivalist life.  I know that!!  But my dreams used to still be there.  Now, my mind tells me I am foolish to dream about something my mind and body cannot do.  So, these dreams have been taken away from me by the reality of LBD.

No pills in the world can help with this depression.  

Robin William's Wife tells all

Today, Robin Williams' wife discussed his struggle with Lewy Body Dementia on Good Morning America.  She is going to be on "The View" tomorrow.   This is great news for those of us with LBD for all the obvious reasons.   But there is one other reason that makes me happy.

What is that?  Well, maybe now I will not have to describe my disease to everyone who doubts that I have it!!

Monday, November 2, 2015

My Father in Law blazed the way for me!

I have written before, I think, that my Father in Law had Alzheimer's way back in the mid to late 1980's.  While his Wife was alive, he seemed, to those of us on the outside, to function OK for a man that was stone deaf!  She spoke loud, told him to do none thing a a time, and that seemed to work.

When she died, we all learned just how bad off he was.  The last five years of his life he lived either with us or in our vicinity.  We had custody of him and saw the later stages of the disease.

He was a tough old bird and he died of septicemia because the autonomic part of his brain failed and he is large intestine stopped pushing solid waste out of his body.

One thing I just remembered and the subject of this post is how his mind worked.  Every time we visited him, he would tell us how hard he was working!  I used to think; "Work, what work?!"  Now I know and now I understand.

I wrote before that my mind is always thinking, constantly running, on the thought pattern of; "I have to retire, I am working too hard, I need to put my papers in!"  Today, I realized I was in the same thought pattern as my Father in Law!!  He showed me what was to come for me so that I could understand it when it came!  Or better yet, God used Kurt to teach me what was coming and then brought it back to memory when my mind began to short circuit!  What a gift!!

To actually see the brain malfunctions of my Father in Law and then be able to apply that to my journey with LBD, lets me understand why I see life as I do and why my brain is doing what it does!

While I try to provide information others in recording my journey, GOD did the same for me, 20 plus years ago.  I cherish that knowledge and the path Kurt Herke blazed for me and now others that will read this post.

Thanks Kurt!

Note;  I would appreciate it if you would forward this post to anyone dealing with any Dementia.  Thanks.


Sunday, November 1, 2015

"WHY, did you do that?!"

OK caregivers, here is one of your most egregious faults.  Your LBD spouse has just done something out of his or her normal character.  It was really weird, or repulsive, or offensive, or immature, and your response is; "WHY did you do that!?!?" or "Don't you EVER do that again!!"

From the LBD patient perspective, my reply is; "What?"  Because I don't know the thing I did was wrong in your eyes.  I do not see things as I once did and I probably never saw them as your do.  So what if I made a hat out of the Church Business Meeting agenda and I am now wearing that hat.  What's wrong with that?

I do not do crazy things on purpose.  They just happen because my brain is short circuited!  I do not want to warn your wrath.  I have spent 43 years trying to avoid that pain.  So, please, give me a break and understand that I act foolish, silly, crazy, and odd, because I just do not know what I am doing or that what I am doing is offensive.

More reading issues

I was looking at the menu for tomorrow.  I was absolutely certain tomorrow entry that I wanted was Chicken Marsalla.  My Wife later looked and it really was Citrus Marinated Pork.  I saw the "C" and the "M" and my brain made Chicken Marsalla from that.  Many times, I look at letters and relate what the words look like, in my memory, to words I know.  I actually do not read the word.

I also notice this in Church where we display the words to the Hymns on  screen.  Many words I sing wrong because I think they are words they are not.  No issue in Church, I sing solo.  So Low no one can hear me.

Just the same, it is an indication than my brain is no longer processing things in a normal manner.  This illuminates the progression of my disease.

So, just another update, to keep you on track and help me keep track of where I am going.

Friday, October 30, 2015

Hallucinations

I have had hallucinations from early on in my journey with LBD.  They have come and gone and came again.  I have always had all three types of hallucinations; Visual, Auditory, and Touch or Sensory Hallucinations.

For a while, they were all gone.  But, recently that have returned.  I have been experiencing visual hallucinations of small animals.  But, in the last few days, I have been experiencing Touch hallucinations.  The occur when I go to bed.  The dogs are in the bed, laying down, quiet.  I am just settling down and then I feel the bed move as if someone has sat on the edge of the bed.  Sometimes, it is as if someone is walking over the bed.

These pass fairly quickly, but they are disturbing.  Because the room is completely dark, I am the only human in the room, the dogs are asleep, and the bed moves!!

Some wonder why Robin Williams committed suicide over his hallucinations.  He had other demons to deal with because if past drug and alcohol abuse and the Lewy Body Dementia Hallucinations must have been overwhelming to him.  So, I CAN understand.

This is a signature feature of LBD and I have had to deal with it from the beginning.  Attacking Christmas trees, horses, crashing planes, cars, boats, people walking across the freeway, my wife calling me, beds moving, the feeling of someone touching me from behind, and ones I cannot remember.  This is becoming a problem for me.

Tuesday, October 27, 2015

Others with Lewy Body Dementia

My Wife is involved with Bible Study Fellowship and has met a lady whose Husband also has LBD!  This is monumental to me and as reported, to them also.  To actually, personally, know someone with LBD, that we can compare our journey with, will help all of us on this journey.

From what I have learned sofa, he is a little farther down the road than I am and has many of the same issues I have.  Just think, now, I have evidence that these symptoms are actually related to my LBD!!

Compare this to taking a car to a mechanic, trying to replicate the noise, symptom, vibration, with NO mechanical knowledge on your part and the mechanic is deaf and blind!!  That has been our journey up to now!!

So, it is my hope we can get together, learn from each other, and help each other on this journey!  I am truly enthusiastic about this developement.

Monday, October 26, 2015

Lack of control of ANGER!

It is interesting how LBD impacts my ability to control my anger.  I have aways had a "Healthy" anger.  I have always been able to "Spin Up" at a minutes notice.  And when I was "Spun Up" my anger was directed at the individual or individuals that caused me to be angry.  That all seems pretty normal.

Now, my anger seems to be directed within.  I tend to hold my anger in and do not scream, yell, strike out, or use profanity.  I do not threaten to harm anyone or take any aggressive actions.  Instead, all of this is directed inside.  Thus, there is no relief of the pressure and stress caused by my anger.  There is never any relief.

Some of this may be caused by a self defense mechanism in that I try to maintain a calm and cool exterior to prevent me from loosing my freedom.  I never worried about that before.  Now, they have something to use against me, my disease.

Some may also be caused by my total discuss with America, our so called, leaders, and the direction of our broken, defeated, country.

If I have my wish, I would live in a one room, cement cabin, on 20 acres, in the uninhabited part of South Dakota, alone.  People only anger and disappoint me.

Thank goodness I can hide in my bed, and I think I will.

Sunday, October 25, 2015

A Cancer Drug that might help Lewy Body Dementia patients!

A very good friend of mine, Jon Harner, sent me an article from NPR, dated October, 17, 2015, written by Jon Hamilton, titled; "Can A Cancer Drug Reverse Parkinson's Disease and Dementia?"

The article talks about a small study group of 12 patients given small doses of a cancer drug.  Many of the group had significant improvement in their movement and memory issues.  The study lasted 6 months and then was stopped.

After the stop of the study, that patients that saw improvement began to see their issues return.

I realize this is a very small, short, study.  But, it appears to offer hope.  And that is exactly what we need.

I invite you to read this study and pass it on to your neurologists and Family Doctors.

Thursday, October 22, 2015

Troubles reading!

For a while, I have had a progressively worsening issue reading.  It showed up early in my journey as an on again, off again, issue and is now with me all the time.  I simply cannot maintain my attention reading anything over a few words.  And, I miss letters in words or swap them.  For instance, a Friend sent me a story about a Cancer Drug helping with Lewy Body Dementia.  But, I saw the title as a Cancer DOG helping with LBD!!  I though;  How can a DOG help me?  I already have two and while they are good companions, they cause me more issues than help!

But, it was a great illustration of how LBD impacts every part of my life.  And that impact is increasing, quickly.   I told my wife about the article and she wanted me to write about it to preserve it for future doctor's appointments.

I have also noticed my articles are getting shorter.  That is also related to this issue with reading.  My typing puts "Spell Check" to it's extreme level!

So, my friends, keep this articles about "Cancer Dogs" coming.  They help me greatly.

Wednesday, October 21, 2015

Physical Therapy II

We have been going to Physical Therapy (PT) for over a week, maybe two, I am not really sure.  My legs still hurt in the evenings and I am still very stiff.  Since I have fallen twice in the past week, the Therapist is paying particular attention to my balance issues.

Today, she recommended I uses a walker when my left leg feels weak. So, she has obviously isolated my falls to a weakness in my left leg.  It makes sense.  I have noticed a weakness in that leg myself.

Right now, I am sitting in my chair with my legs up, trying to rest after my PT session.  Stretching, crazy moves, and some leg presses have me tired.

Another issue surfaced to the Therapist that I have known for a while. Stairs are not my friend!  Especially going down stairs!  She had me walking up and down stairs and I told her about my issues going down.  She looked like a light just went on!!

I believe the is all connected the Parkinson's side of my Lewy Body Dementia.  And, so it seems there is evidence that portion of the disease is increasing also.  No big deal, just another challenge to overcome.

I have another PT session Friday.  I wonder what we will discover then.  More later.

Sunday, October 18, 2015

One out of three senior citizens fall every year!

I fell twice in the last five days!   That means, six senior citizens don't have to worry about falling the rest of this year!  No thanks necessary, I am glad to help.

The first fall came on an escalator in a department store.  I was getting on the down escalator, very carefully and holding on to the hand rail.  My left leg collapsed and I fell to my knee.  Tonight, playing Billiards, I made a shot and started to turn to walk around the table and my left ankle collapsed and I fell to my knee again.  This time I grabbed the pool table to keep from falling completely.

These falls are related to my LBD and things are speeding up as far as the progression of this disease.   Falling has become a major concern and I will be sure to discuss this at Therapy tomorrow.

Since falling is a prime issue for moving an individual to Assisted Living, the recent rash of falls concerns me.  Not that I don't like our Assisted Living accommodations.  It is just that it signals a major downgrade in my condition.

Oh well, we will see what we will see.  More later.

Saturday, October 17, 2015

What do I look forward too?

The answer to that question is....nothing.

When we were young, the next excitement was just around the corner. Getting our driver's license, the Prom, enlisting, getting engaged, a vacation, buying a home, getting a boat, or a corvette, all very exciting life experiences.  But, what do I look forward too now.

I used to dream about the next adventure, not now.   When I close my eyes, I see nothing.  When I get up in the morning, there is no excitement, no hopes for a good day, and no promise of a brighter tomorrow.

The things I used to like to do either I cannot do or do not interest me anymore.  Heck, I don't even drive anymore and I LOVED to drive an automobile, pick up truck, big truck, motorcycle, anything!

Yes, I have some enjoyable experiences.  I enjoy billiards on Wednesday and Sunday evening.  I enjoy the opportunities God gives me to preach His Word.  But they come seldom.

I have learned, or better yet, observed, that Lewy Body Dementia is a life sentence in a prison made up of the confines of my mind.  And those walls that confine me are closing in!!  Slowly at first thanks to Named and Razadyne, but now increasing in speed.  Close and closer they close in, restricting my view of life itself.


Thursday, October 15, 2015

My mind in in rapid repeat mode!

I said recently I washing difficulty with rational thought.  One thing I did not write about is the thought that run through mu mind time and time and time again, everyday, day in and day out!!

For instance, I cannot tell you home many times a day, the thought; "I really need to retire.  I just cannot take this anymore!".  Or: "I need to put my Papers in."  I also repeatedly think about Navy issues like I was still on active duty.

Now, I have been retired from Active Duty Navy since 1989!  Why would I think about retiring from the Navy, time ad time again, everyday?   There are other repeated thought themes that I cannot remember as I write this post.  Imagine that.

It seems my brain is functioning less efficiently recently.  I believe the disease is progressing.

Tuesday, October 13, 2015

The onset of an irrational mind

Up to now, I have been able to "rationalize" thoughts and visions that I have had that really do not make any sense.  For instance, I saw a white horse with brown patches grazing in our back yard.  I rationalized it because I did not own a horse and our backyard was too small to support a horse.  Hey, it worked and the horse vision did not bother me.

The man walking across Interstate 10 in traffic was not as easy.   was sure he was real!!

Some of my thoughts have been the same, unrealistic and therefore I can explain or "rationalize" them away.  But now, I am beginning to believe my thoughts even though there is little or no evidence for them.   I am very reticent to answer email questions from blog readers.  Since I now fear they are gathering evidence against me.  I stay in our apartment most of the time, nesting, for security.

This is troubling for me and my Wife.  We discussed this last night since I wanted her to know I was beginning a new phase of issues.  She was visibly upset!  I apologized, but, the truth is the truth and I always want he rot know what I am experiencing.

You might be able to imagine where this issue may lead.  So, we are guarding against those issues and Praying that God will carry us through this storm.  Linda know what I am going through.  I have hid nothing.  But, LBD is becoming a mean, destructive, terrible life companion.  And I fear the worst is yet to come.

Saturday, October 10, 2015

An open post about my nights and life with LBD

It has been a tough day.  And tonight is even more difficult.  My life and how I live it has changes SO much in the last few months that I do not recognize myself.  It is true.  I looking the mirror and don't recognize who is looking back.

My mobility is becoming diminished.  We were shopping a day or so ago and I almost fell down an escalator!  Now, I was VERY careful getting on, held the handrail, and watched everything I did, but, my left arm gave way and collapsed and down I went!   Not far, but I went down on one knee and almost went over.

I have written before about how LBD has taken things from my life.  Physical things, mental things, that were important parts of my life, are now gone.   Or if not gone, so degraded they are no fun anymore.

Last night, we went to a Fund Raising Dinner here at Azalea Trace.  It was a wonderful evening with great entertainment.   I spent some time talking to a gentleman that I knew by sight and that had just moved into Assisted Living.  I did not know he had Dementia until he told me.  He and I briefly discussed our issues but I really am going to try to visit him for a longer, more in-depth, discussion this week. I am more comfortable talking to Dementia patients than other people.

This post obviously has taken a couple of days.  I was so overwhelmed last night that I closed my laptop and went to bed!  But the intermission has reinforced my views of life with LBD.   Things I did, and took for granted, I can no longer do!  I am only 64 and I never thought these things would be lost to me at this young age.

I am going to post this, even though it is not complete or even cohesive.  But, it illustrates how disorganized my thought process is.  When I started writing this, I was upset, and had this article in my mind ready to write.  That went out the window somewhere.  It also illustrates my frustration and mental anguish over the losses related to LBD.  President Reagan said Alzheimer's was the Long Good By.  It is a Long Good By to those you love as well as to yourself and who you used to be.


Tuesday, October 6, 2015

My Wife is already a Widow!

I was sitting here thinking, as I often do.  No TV, no music, just silence.  I was reflecting on my Wife's response to my disease.  She has it difficult considering she is living with a ticking time bomb.  Unlike having a spouse that, while you understand they will die at some time, she is dealing with the realization that she is watching me die right now!

This topic came into my mind because the Chaplain here at Azalea is starting a Caregivers Support Group and my Wife was considering if she wanted to attend or not.  

When I was on active duty, as a deployment approached, she became more and more distant with me.  Her view was, the sooner you go, the sooner you will be home.  I found that quite frustrating as a young husband.  Now, I understand it a little more.  And I truly do understand her mental status as a widow, already.

I also find it interesting that she understands my attitude, or "Fight" response may extend my life.  Last night she told me not to let my disease progress too fast.  Of course, I have little or no impact on how fast this disease will progress.  I am just along for the ride at this time. And truthfully, I have little fight left in me.  I would just as soon have this over with!

Unlike her, I see this unending, ever increasing, fight to be exhausting, demoralizing, and tedious.  I am NOT the person I once was.  I have few of the capabilities that I once had and I find that fact frustrating.   Every single part of my life has been negatively impacted by Lewy Body Dementia.

But, I just thought I would share m observation with you.  That is why I write this blog.

Lunch with my Pastor

My Pastor came over for lunch today.  I enjoy His company and value His input so I was anxious to sit down with him and discuss things.  He wanted to get an update on the progression of my LBD.  That is why I am writing this post.

First of all, He asked for the update which shocked me and made me happy at the same time.  It is hard to explain this disease in one word answers.  So a discussion over dinner make the discussion easier.

Second, He actually wanted to understand how I was doing.  Maybe He reads this blog.   He did ask me an interesting question.  I was explaining to him that the recent changes in the diseases impact on me has finally put me in the place of not finding LBD interesting!  Up to the recent changes, I have looked at this disease as an inconvenience or an issue I could deal with.  Now, I realize I can no longer compensate for the effects of the disease.  It was an eye opener to say the least.  His reply was a question:  Was I angry with God?  My solid reply was NO!  God has been very gracious with me through out this entire journey.  God made it so I got an early diagnosis.  God sent me to a very aggressive Neurologist.  God has made the progression of this disease slow up to now.   God has taken good care of me and I believe He will until he takes me home.

Third, and for those of you who read this, the most interesting revelation of the conversations was the fact that I cannot describe what is happening in one, concise, description.  I found myself looking for the things that were causing me issues!  I had actually forgotten many of the things that ARE wrong.  I would remember things as we discussed other issues not related to my disease and would then report them.  I find it strange that I cannot list everything that is wrong in one, concise list!!  But, it makes sense that if my memory is broke, I would not be able to recall everything.  But, again, that fact was a shock to me!!  It truly was the first time I ever sat down and tried to have a conversation about my disease with someone who actually cared.

So, be careful what you ask for!  You may get it and then have troubles dealing with your request.  I wanted someone to ask me about my journey with LBD and when that caring person came forward, I was at a loss for words.

This was a revealing day!

Monday, October 5, 2015

The first day of Physical Therapy

We decided to ask my Neurologist for Physical Therapy (PT).  He sent a prescription to the PT group here at Azalea Trace and today was my first day.  Wow!!  Am I impressed!  The PT therapist did a one hour evaluation of my rigidity in my legs.  She put me through my paces.

But what impressed me the most was that she actually knew what Lewy Body Dementia was including all of the issues related to the disease.  Then, she engaged me in a conversation to find out how the disease was impacting ME!!  Double WOW!!!

I am very encouraged and I am looking forward to my next PT session on Wednesday.  I do not know if the PT will help or not, but the attitude of the PT staff has impressed me beyond words.

This is one of the main reasons we decided to move to a Continuing Care Retirement Community.  All the help we need is right here under one roof!  More later,

Monday, September 28, 2015

I finally figured out what I want!

Tonight, I finally figured out what I want in regards to how people treat me over this disease.  I want someone, anyone, to sit me down and honestly, sincerely, ask me to explain how the disease impacts me.  How I deal with it, and anything else they can think of to ask.  I want them to ask these questions without that accusatory tone in their voice and without the attitude of; "You're a phony!!"

I am not being sarcastic.  I truly just want one person, to become personally interested in my struggle with Lewy Body Dementia.

Enough said.

Sunday, September 27, 2015

A study in Lewy Body Dementia

I received a comment from a Medical Student in the United Kingdom stating that she used blog to help her understand Dementia from the first person.

My Wife, who spends many thought-filled hours trying to dissect my disease, encouraged me to address some of my more pronounced hallucinations and relate them to what she believes may be their basis. She also co-authored this post.

We know pronounced hallucinations are one of the main symptoms of LBD.  So, they are important in understanding this disease and how it impacts the patient.

For instance, I have written about my hallucinations of me being trapped by fully decorated and illuminated Christmas trees.  Each time, these Christmas trees surround me and prevent me from getting out of the room.  They actually impede me from going anywhere!

Now, let me unpack this in my Wife's analogy.  Until two years ago, Christmas was a very unhappy time for me.  I dreaded the Holiday!  So, Christmas trees represent all that is wrong in my life.   Therefore, I am being trapped by the things I hated from my past.  She also draws a correlation between this hallucination and a drop in my cognitive abilities.  I agree with that.

Or, the man walking across Interstate 10!   I was driving in moderate traffic on clear sunny day.  About 100 yards in front of me was a bridge that crossed the freeway.  I saw a man, as real as any man I ever saw, walking across the freeway, from one bridged abutment to the other.  When we got even with the bridge abutment I looked t my left to see where the man was.  My wife asked me what I was looking for and I told her;  The man walking across the road!  She told me there was no man.  Earlier in the week a man had been walking across a city street.  Did my mind bring that forward and place the man on the freeway this time?  Does Lewy Body dementia bring events from the past to the present - out of the context of current reality - but definite events that the mind processed prior.

Then, when we were back in Virginia, we went canoeing on Lake Wright.  Riding in the car, I saw a bright red sports car.  I do not now remember what kind it was, but it caught my eye and I was discussing it's virtues.  Then, when we were on the lake, in the canoe, I was startled by a red power boat close to us!  Power boats are not permitted on Lake Wright, so it was not there.  Again did my mind bring an interesting event from the past to the current reality - not really an hallucination but a past experience the "Lewy Body mind" puts in the present & doesn't realize it doesn't belong there.

Third is the plane crash.  One day, with my wife driving on a quiet residential street, I saw, clearly, a DC-3 flop over on it's back, presenting that unmistakable DC-3 belly and wide wings, and crash, nose down, not a mile in front of us!!  Now, I actually saw an A-6 with 5 external fuel tanks flop over and crash in front of me near NAS Oceana when I was the Command Master Chief at VA-55.   So, again, this hallucination may have been related to and actual life happening that the "Lewy Body mind" places in the present.

And finally, we were in an Eye Glass store.  There was a dirty, unkempt, homeless man hassling the receptionist.  She handled it well and the situation was defused.  Then, a few weeks later, we were back in the store to pick up our glasses and I was staring at a chair, where I distinctly saw that man sitting and I felt he was going to cause trouble.    I told my wife I was going to intercede and solve this problem.  She informed me no one was in that chair!  She believes my issue with the unresolved actions of this man, weeks before manifested the hallucination on this day.

My Wife wonders if LBD patients bring past memories into the present mind function and live them out.  And, I hope you remember me writing about being in our home, but in my mind, I was on a AEGIS Class Cruiser, yelling at a group of young Gunner's Mates for gun decking PMS and not doing Pre-Fires by the PMS Card.  I could see, smell, feel the ship.  I was actually walking through ship spaces!!!  In my mind, I was on that ship at that time and those people were real and I was talking out loud! Not in my mind.  A telephone call brought me out of that hallucination.

Do we short cycle our memories and bring them forward?  If our memory can be represented by a sine-wave, is that sine-wave shorter and more compressed in LBD patients?  Is this why past memories and reality get mixed together in the LBD patient?  And, why do Alzheimer's patients stay in their mental comfort zone when LBD patients move in and out.  All these questions need research.  Does the Alzheimer's mind have a clear break in memories - a chasm the mind can't go forward or skip over - so the patient is stuck in the past and can't live in the current or move into the future?  Does the Lewy Body mind bunch up memories and mixes the past with the current and can't sort out the difference.  Do Lewy Body patients stay in current reality longer because the Alzheimer's "chasm" isn't a part of Lewy body dementia?

Does the Lewy Body brain lose the rhythm of normal brain waves, distorting the memories kept in those waves?  Does it run too fast & bump or blend memories together - like a heart that has an irregular heart beat?  Does the Lewy Body brain have a shorter span of brain waves or a faster flow - what causes the out of sequence memories that appear to be hallucinations?

Conversely does the Lewy Body brain bring unusual, or unresolved events from the past back into the present  to try to resolve or make sense of something the brain is dwelling on?

Hallucinations are a major part of LBD.  They can be frightening, as in my Christmas Tree Hallucinations.  Or, they can cause you to change the way you live your life, like my hallucinations of the man crossing the freeway caused me to stop driving.   But, the fact is, hallucinations are part of LBD and the are a big part of my life.  They can be harbingers of declines in cognitive ability or reflections of my past.  I truly do not understand them and only write this at the bequest of my Wife, who is deeply involved in my care.  I am blessed to have her and her interest in LBD.



Saturday, September 26, 2015

Time to reduce things that I do

I wrote about my cognitive decline and my failed attempt at being a name tag maker.   But, because of the stress of preparation and travel, I have decided to give up our Ministry at Bay Breeze Assisted Living Facility.

We have been active in that Ministry for over three years.  It has been a blessing to us and I believe to the residents of Bay Breeze.  I was Blessed to Baptize two Men from Bay Breeze!  And we have studied  in-depth, at much of the Bible.  We have brought the Communion Table to these folks, a first for they community.  And the fellowship of those folks has strengthened me.

This Ministry started when we lived 5 minutes from Bay Breeze.  Now, it is a 40 minute drive, one way.  Then there is the time to prepare an in-depth, meat and potatoes, Bible study.   Many of the members of this Bible study group are well versed in the Bible!!  That means I must be on my toes!!  They have taught me more than I have taught them!

I love these folks and the staff.  But, it is more than I can to now.  And I really do not like to leave Azalea Trace.   I am, more and more, becoming a hermit in this 120 acre community.  Yes, I like to walk outside around the buildings.  Yes, I like to use the golf driving range. Yes, I wash the car in the car wash stall.  But all that is rift here, where I can still see my building.  It is familiar, comfortable, and now, my home.  I do not like to venture outside of what is familiar.

Then there is riding in the car.  Since things seem closer than they might be, I get a bit nervous and twitchy as a passenger.  In truth, I drive my Wife crazy!!  STOP!  Watch out!!  You're too close!!  STOP!!   You get the idea.

So, we will reluctantly say good-by to our friends at Bay Breeze.  I am disappointed, but, it is a necessary concession to Lewy Body Dementia.   It is also another illustration that I am progressing more into the third quarter if this game with LBD.  Oh, and by the way, I am loosing to LBD.  But, I knew I would.   While I thought I was winning in the first and part of the second quarter, I started loosing in the second half of the second quarter.  And now, we are well into the third quarter and LBD is running up the score!!  At least, that is the football analogy.

The inability to learn new skills that I wrote about before and my realization that the Bay Breeze ministry was wearing me out and over whelming me has knock me down emotionally.  I am not sure what is coming next.  I know it will difficult, uncomfortable, and challenging.   I know I am no longer up to the challenge, so LBD will win.  


I have lost the ability to learn new skills!

We live in a wonderful Continuing Care Retirement Community (CCRC) called Azalea Trace.  I know I have written about it before.  The residents here do many of the more skill related everyday chores as volunteers for the community.  It truly amazes me what they do and how much they add to the lives of the residents in Independent Living as well as Assisted Living and Skilled Care.

For instance, my wife uses her Library Masters Degree in the large Library Azalea Trace has.  I Preach as a stand in for the Staff Chaplain on Tuesdays in Skilled Care.  Recently, I took on the responsibility to make signs and name tags for the community employees, residents and activities.  The equipment they uses is computerized and very up to date.  The individual that has been in charge of this task has done an exceptional job and took great pains to train me.

However, I have had a recent down turn and tonight I came to the realization that I just cannot master this skill.  I can't even manage my time in getting to the shop.  It seems my time just slips through my fingers.

As a further illustration, to me, that I just cannot learn this task, tonight I went down to the shop and tried to make some name tags.  I did OK on the computer part, but when it came time to set up the engraving machine, I screwed up!  I damaged the mat that holds the tag for engraving!  I just could not remember how to do what Oscar taught me to do, twice.

So, I came back to our apartment, realizing I am now a Cognitive Invalid.  I cannot learn anything new.  My brain will not retain new information and I cannot move new info into my hands for application!!

I typed a letter of resignation explaining my situation to Oscar.  I hate failure and I hate letting Oscar down.  But, I cannot do what I cannot do.

I have written recently about being in the second half of this disease, and this further illustrated my demise.   So, as my Wife said, we will focus on what I can do.  She always finds a way to make things good.

But, there is more...

Thursday, September 24, 2015

Routine, Routine, Routine!!!

In the life of a LBD patient, ROUTINE is THE most important thing the caregiver can influence!!!  I cannot say that often enough.  And, even with my routine being content, I have issues.

More and more, I stay in my retirement community.   We do thing the same way everyday.   And when things change, for any reason, I am off my game.  My wife is very careful to control my routine.  She understands how my routine impacts me.

But, even with a stable routine, I have had to reduce some of the things I have done, routinely, over the past few years.  My cognitive ability and my stress load have required me to reduce the things that I do outside of Azalea Trace.  I simply cannot do as much as I once could.

But, back to routine.  I often hear about caregivers taking their Dementia patient to new locations, long vacations, visits to the Grand Kids, or even moving them after they have had their Dementia diagnosis for a while.  I am not a doctor, but I am a person with Lewy Body Dementia and I believe a major move now, would cause MAJOR cognitive and even physical issues.  

On another note, but related to a stable routine;  I have had stability issues recently.  I now used my cane all the time.  The pain in my legs, all the way up to my buttock, is constant and increasing.  I do not complain openly about it because there is nothing I can do about it.  But, my Wife knows and called my Neurologist today to try to set up Physical Therapy in an attempt to mitigate the pain and maybe increase my stability.  I said I will go to the therapy as long as it is here, at Azalea Trace.   That way I will not go out of my familiar and protected community and my routine will be maintained.

So, it is my recommendation to maintain your Dementia patients routine completely.  If you plan on moving, do it early in the disease.  If you are in the second half of the journey, as I am, stay where you are!  Bring in help if you need to.  But don't change anything.   If you do, you may not like the results.

Wednesday, September 23, 2015

The difference is Day and Night!

It is 8:10 AM here in Pensacola.  It is cool, sunny, the birds are singing, and I feel good.  I had a good night's sleep with few bathroom visits and although I have my normal leg pain, I feel OK.  Why?  What is the difference?  It is morning, daylight, and there are NO loud noises.

It still amazes me how there can be such a difference between how I feel in the morning and how I feel when the sun starts to go fade.  My wife can document these changes.  We keep the house brightly illuminated but that does not help.

The entire character of the world changes when it gets dark out.  Everything seems more sinister and threading.  Noises seem louder and more sharp!  Those noises cut through me like a sword.   I become grumpy, agitated, and I react with anger at anything and everything.

But now it is a bright morning and nothing seems to bother me.  How long this will last is any one's guess.  So, I will enjoy the good mood while it lasts.  More later.

Tuesday, September 22, 2015

Who cares if I have LBD?

OK, I realize I am depressed, angry, and difficult to get along with!  And yes, I know I have some friends, like Jerry and his family who are genuinely concerned about me and my journey.  And yes, my Wife cares, in her way.  I say that because she has to cope as a caregiver, a wife of a LBD patient, and a future widow!  But, I run into so many people that either call me a liar, deny there is a disease called Lewy Body Dementia, or just dismiss me as a crank.  So, my question is, does anyone care.

I don't see Jerry Lewis doing a Telethon for LBD patients.  And even the deaths of Robin Williams and Casey Casum did not help our cause.  The truth is, we are under publicized and under documented.

The Gay community had the same problems with AIDS and to fix that problem, they gave blood!  Then, many people that were not Gay got AIDS.  That gave AIDS plant of attention!!!

So, is there a way to infect people with Lewy Body Dementia?  No.  And since those of us with LBD are incarcerated in "Homes" or "Facilities" for our own protection, no one see's us and therefore, no one experiences LBD unless they have a relative or close friend that has it.

Friends, there is an interesting case.  Many of my friends have stopped contacting me since my diagnosis.  Hell, much of my family no longer contacts me!   Why, maybe they are afraid they will catch LBD from casual contact!  Or, maybe they just don't want to be around someone with Dementia.  Give me a break, I drool on my shirt and pee in my pants sometimes.  But, I can still be fun to be with!!  The fact is, I cannot do what I once did.  But I still shoot pretty well!  I will admit my stamina is not what it once was, but two hours at the range is enough for most folks.

Look, my point is, people with known diseases like cancer, get much more attention than Dementia patients,  I really do not know why, but I do know we get lonely.  Since most of us can't drive, getting out is dependent on those of you who are "Normal".

I am just complaining, I guess.  The sun is going down and I am dealing with my nightly friend; "Sun Downing".  So, just forget this post.   Oh, you already did.    

Saturday, September 19, 2015

What it is like to have Lewy Body Dementia, the Second Half!

I am well into the third quarter of my journey with LBD.    Many changes have occurred since I wrote the first article about my condition.  So, I thought it was time for an update.

Depression is now my constant companion.  The vast majority of the time, I feel that no one cares about how I am or my needs.  I shun contact with most people with the exception of a few very close friends and small children!  I find i enjoy and crave spontaneous interaction with young children.  Why?  Maybe because they do not know me and do not know I have LBD.   They have now knowledge of how I was before the disease nor how the disease has impacted me. These interactions are short, fun, and without any future connection.  I love to make small children laugh, feel important, and wanted.  Funny, as I write this, all of these emotions are missing in my life since LBD has progressed.

Sleep is my escape.  My bedroom is my sanctuary where I can thing, deal with my anger and other emotions on my terms, and be away from others and the world.  I seldom watch the news but prefer to get my news from the Internet, in small doses that I can control.   This isolates me from the diatribe of patrician people.  My Nation is in a fatal decline, just like me, and the news of the day painfully illustrates both truths to me.

Most people I love have withdrawn from me.  Oh, some are here, close to me, physically but not emotionally.  That is their way of dealing with my disease.  I now understand why the elderly, especially those with Dementia's are placed in care facilities and forgotten.  To invest time or emotions in these folks, like me, is too painful for the loved ones.  It is like keeping their loved ones dead body in the bedroom!   Well, I am not dead yet and I am still mostly here mentally, and I need mental stimulation and emotional and physical love!

I do not drive because of my disease.  We made that decision to protect us financially.   I love to drive, and being a passenger is painful to me.  But, it is the right decision and everything I get in the passengers seat, it cements that decision so that when I am no longer able to make that emotional decision, I will already be used to NOT driving.  It is sort of a reconditioning of my brain.  The same that happened at 16 when I received my driver's permit.

Not driving, does make me a prisoner.  While the community I live in offers many social events and opportunities to interact with others, I cannot go any where outside of the community without someone driving me.  There might as well be a all around this compound with guards and gun emplacements!  

Many times, I am overwhelmed by noise, as I have written recently.  That night, I was violent angry and ready to fight someone, anyone, over the attack on my senses!!   I am also overwhelmed with a sense of not caring about myself or anything or anyone else.  When this overwhelms me, I feel "no one gives a shit"!   I want to be alone when this occurs.  Alone in all senses of the word.  Yet, I wish someone would hold me, kiss me, tell me I am loved, important, and needed.

Physically, I now NEED my cane for balance and I feel lost without it.  I have involuntary arm and leg movements.  My major muscles ache most of the time.  My digestive system is in turmoil.  I suffer from constipation/diarrhea bouts every couple of days.  There are no normal bathroom days.  Incontinence is not a constant condition but is starting to occur.  My vision is now impacted and I have difficulties seeing any distance.  I have great difficulty reading and comprehending.  My speech patterns have been altered to short, sentences and long searches for words to describe most things.

My Blood Pressure fluctuates causing me to become dizzy and unstable on my feet.  This autonomic disruption also impacts my sexual ability.  I cannot maintain an erection hard enough to achieve insertion or long enough to achieve orgasm.  This, along with loosing my independence leaves me feeling less than a man.

Mentally, I am loosing my memory of my favorite past, my Navy days.  I have periods of name remembrance and then loose those names and events.  My writing in my Navy Blog has all but stopped.  I get angry and abusive over events that I should not.  I have no social filters.  Much to my Wife's dismay.

I have been abandoned by my Congressman, Jeff Miller, of Florida and the Veterans Administration.  Congressman Miller and his staff have done nothing to help me with my VA claim.  The Disabled American Veterans Association has been a great help.  But, they can only do so much.  Congressman Miller has clout, but I guess I am not important to him!

This has, more and more, become a lonely, solitary, fight.  The doctors do not have a clue and I feel they learn more from me than I do from them.  Even the closest family and friends keep me at arms length not wanting to invest in a dieing person.   People I meet tell me I do not look sick, even retired doctors.  Even though they have no base line or insight into my mental or physical condition.  If someone has cancer and they tell a new acquaintance, that new person does not say; "You don't look like you have cancer!".   Yet they do say, you don't have Dementia!  The end of their statement is never said but only thought; "You lying sack of shit!"  But, I hear it and it hurts and frustrates me.  Someone is going to get hurt someday soon when I canon longer control the emotion to punch that uncaring individual in the nose!

As you can see, I am now full consumed with Lewy Body Dementia.  In the beginning, I had the perspective of: "That is interesting" when a symptom occurred.   Now, I only feel rejection and hopelessness.  Much of the writing concerning Dementia is centered on the caregivers.  Well, from my experience, they have it easy.  Just detach from the patient and go on about your life.  No one really want to know what the Dementia Patient is gong through and experiencing.  Every time I tell someone what I am experiencing, they tell me they have even more horrific issues.  So, I seldom tell anyone anything.

Like I said, this is a lonely journey with a terrible disease, that none knows about or cares about.   I would be much better off in a Dementia ward of a skilled care facility, with others on a similar journey.  Just lock the doors and keep the gawkers out.

This was a long, very personal, post for the sole purpose of baring all about my journey with LBD.  It was not meant to hurt or get back at anyone.  It was meant to educate anyone who really cared about someone with Lewy Body Dementia.  If that person really exists.

My posts will not become further apart and shorter as I find it difficult to write in this or my Navy blog.  I am still here, just moving much slower.





 

Friday, September 18, 2015

What the heck is that noise?

As you know, we live in a Continuing Care Retirement community (CCRC) called Azalea Trace in Pensacola.  It is a very nice, quiet, genteel, community.  We share one border with the University of West Florida.  We are good neighbors with them, but last night, I learned they are NOT good neighbors with us.

I was walking the dogs at about 2030, (8:30 PM) and I heard this extremely loud, amplified noise coming from a brightly illuminated portion of the campus.  The noise, coupled with the darkness,  drove me into an almost uncontrollable rage!  The noise from the speakers never quit!!  Who ever the moron was on the microphone, he or she was screaming and the system was not well adjusted, so all they got was a loud reverberation and muffled voices!!   It kept going, and going, and I got more and more angry!!  I finally brought the dogs in before they were ready and after loudly expressing my anger, I went to bed to hide!!

I wanted to scream at the noise!!!

Loud noises cause me problems.  But this was way past loud!  It drove me into a rage that only bed could begin to control.

I have no respect for UWF based on the students I see in the area.  Couple that with their reckless, disrespectful, aggressive, asinine, noise attack and I question their designation as a University!  The people in charge should know how this would effect their neighbor.  Or not, see as I believe the staff and professors are probably as dumb as their students.

I probably have no recourse.  And that aggravates me almost as much as the noise did.  Again, there is nothing I can do except hide in bed.

LBD is now in full swing and it is now controlling every facet of my life.  I guess I am fully into the third quarter of this game, and I am loosing badly.  

Friday, September 4, 2015

Living arrangements for the future of Dementia patients

Many times, couples and individuals postpone decisions that would be much better made when everyone was healthy and fully cognitive.  Now, I am not saying we should make these decisions when we are 25.  But, postponing them until the Dementia patient needs skilled care is not a plan either!

But, we are human and many of us just ignore the inevitable and hope things will work out.  Trust me, they won't!

Again, everyone does not have $250,000 to give to a Continuing Care Retirement Community for the entrance fee!  But, there are many great communities that offer Continuing Care without the Entrance fee!  The key to understanding the future is research.  Get on the Internet, go visit communities, listen to their options, and then, seek advice from family, friends who have been on the journey ahead of you, and professionals like Senior Attorneys, Doctors, and Family Counselors.  But do something!!  Before you are in the predicament of having to place your Dementia Patient in a facility you don't like!!

Another issue to consider is the fact that the Facility determines the level of care your Dementia Patient needs!!  You may think Assisted Living will work fine, but your patient may need Memory Support to Skilled Care.  Then there is the issue of anger outbursts and even violence.  These issues reduce the facilities that will accept your Dementia Patient.

There is one more issue I want to bring out.  I know how disrupting my daily routine and living arrangements effects my journey with Dementia.  Our move to Azalea Trace was difficult for me.  It confused me, caused me hallucinations, and a feeling of being lost and confused.  Now, my wife worked with me endlessly, showing me where everything was placed.  How the dishes were in the cabinets, where the coffee maker and coffee were.  How, everything worked.  She went over and over these things to make me comfortable.  And Azalea Trace did everything to make our move easy and orderly.  They even have a Sponsor assigned to help you get acclimated to the community.  Azalea Trace did an outstanding job!   But even with all of that, I was negatively impacted by the move.  I remember an emotion I had of all of my stuff being stolen when we moved!!  I kept asking, where is my stuff?!

If your Dementia Patient is confused, cannot function in the home he or she gads lived in for 10, 20, 30, years, how do you think they will do when you completely uproot them and move them to a facility they have never seen!    Trust me, it will accelerate their dementia symptoms and probably have a lasting, negative effect on their cognitive abilities.  Change is not the friend of a Dementia Patient!!

We did our homework, moved early, and chose a community equipped to meet both of our needs.  Did we have disagreements and major issues doing this?  You Bet!!!  But the end product was good for me and my wife.

So, just like the old railroad crossing signs said;  "Stop, Look, Listen"!  And then decide early in the journey with any type of Dementia in determining living arrangements for your Dementia Patient!!

Thursday, August 27, 2015

People who care

Two things happened yesterday that I would like to report.  First, I had a planned appointment with my GP.  She is a very caring individual that makes me feel like I am her only patient and that she is genuinely concerned about my health.  When we left that appointment my wife commented;  "You always smile and seem uplifted when we leave Dr. Laenger's.  My reply was; Because she cares about me and listens to me and my concerns.

Second, amy wife was making telephone calls to the ladies she will be the Discussion Leader for in this year's Bible Study Fellowship group in Pensacola.   One of those ladies  called has a husband that has Lewy Body Dementia.  They began to compare notes on their husbands.  It seems that ladies husband suffers the same internal turmoil and frustration that I do.  She also said, according to my wife, that he gets frustrated when people don't believe he is ill.  Imagine that.  Now, maybe, she will understand my frustration and anger.  Until NOW my wife has never had contact with a LBD patient with the exception of me.  So, she had no understanding of the issues I endure.  But, if another person, out of her circle, has the same or similar issues, then she has someone to compare notes with.

LBD sufferers and caregivers live in a personally imposed vaccum.   Since there are few support groups, my wife, and I suspect other caregivers, have no one to compare notes with and therefore they have little understanding of what their loved one is dealing with.

Sometimes, loved ones don't want to believe the complaints of their patients.  Why?  Because they don't want us sick!  But, if they know and interact with others caring for a LBD patient, the understanding will increase and maybe, we sufferers will be believed.  I can only hope.