Saturday, February 6, 2016

Good days and bad days

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

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

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

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

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

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

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

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

Monday, February 1, 2016

Not of this world, but in it!

As Christians, we are cautioned to not become part of the trappings of this world, which is controlled by Satan.   Instead, we are told we are sojourners, living here temporarily, and headed to the place Jesus has prepared for us.  We are told to store up our treasures in Heaven.

I have known that for a long time and I have earnestly tried to live my life that way.  But, you know it is hard.  We want nice homes, good cars, Careers that pay well, and stylish clothes.  We want our children to go to good universities and we look forward to long, happy, retirements.  I certainly have sought after those things through my life.

But now, being in the place LBD has placed me, I can truly say, I am not of this world and I am heading home, sooner that later.  Now, don't get excited.  I see LBD as a blessing and not as a curse or punishment. For the first time, I truly do not like or want to be of this world.  I see all the sin and evil in the world and I long to be with Jesus in Heaven.

Yet, God still finds jobs for me to do.  People I need to witness to, preaching that need done, and times for me to just be friendly to people that do not have anyone to talk too.  I treasure those Godly assignments and I seek them out.  But I no longer seek out what the world has to offer.  I do not watch the news, pay attention to politics, or get excited about the direction our Country is going.  I can't change any of those things and they do not impact my present life or my eternity.

My LBD has progressed, faster than before.  I now shuffle when I walk, even though I tell myself not to.  I am more introverted and detached from the world and even people around me.  I do not want the latest new thing, style, or taste.  I am pretty much satisfied where I am at the moment, knowing that the future holds beauty I cannot even fathom.

I spent hours in my chair, in another thought world, or mindless playing solitaire on my IPAD.  I take long naps and go to bed early.  Even the sports I liked hold little interest for me.  For instance, I once was a BIG NASCAR fan.  Now, I seldom watch the race on television.  Those thing just do not hold my interest anymore.

I know the Alzheimer's drugs are loosing heir impact.  But, they kept me going for a long time, so even that is encouraging, not depressing.

This world is NOT my home.  I know that now, more than ever.


Thursday, January 28, 2016

More on Hallucinations

I have said before that I use my two Miniature Poodles, old as they are, to tell me if my hallucinations are real or not.  Well, tonight is the second time my hallucination QA check failed.  I was walking my male senior citizen poodle and he was doing his business.   When out of the darkness, I saw something like a cat or ground hog coming at me, FAST!  Since Marcel did not bark, probably because he had his back to me, I got ready to club the attacker with my cane.  Then, the attacking mammal was not there.  Obviously, a hallucination.

These events are happening in more realistic and more often manner.  I guess they are just an indicator that things are progressing.  Oh well.

Communicating with Dementia patients

I have written a few times as recent as yesterday on this topic.  But, this topic needs more discussion.  I do not see things as I once did.  Topics that I was once interested and energized by are now antagonistic and upsetting to me.  I am much easier upset today than I was just a year ago.  I expect people who know me to understand that I am different than I was before LBD.   I expect them to read information I provide them about the impact of this disease on me.  But sadly, tragically, they don't..  Then, when I get spun up, angry, and become quiet or go to bed they wonder why.  Heck, a blind man on a galloping horse should be able to figure this out.  I gave you the answers but you did not read them.  And I am the one at fault in you mind!  No wonder i want to live alone in Assisted Living.  Alone, away, from aggravation is much better than being around people that want me to be like I used to be.  I am not like I used to be and no amount of your wanting me to be like I was will make me like I was. I am a man with Lewy Body Dementia.  My mind is broken, and does not function in any manner that you understand.  Don't try to change me, try to deal with me as I am.

For instance, I do not care about tomorrow!  Tomorrow does not exist for me.  I live mentally, in the here and now.   Things like budgets, inheritance, and other future events are meaningless to me and furthermore, they make me angry.

I don not like to watch the news or politics.  They are things of the future.  They are people that do not care about me and do not impact my life with LBD.   Politics and the News serve to upset me and agitate me.  I am much better watching Wheel of Fortune.  I have voiced this many times.  But, the television is on CNN right now.

People that talk to me, either tell me there is nothing wrong with me, or tell me they have much worse problems than I do.  If you are worse than me, I am sorry for you.  The mental world I live is in not nice.  If in fact, you do have issues worse than mine, you require institutionalization!  Immediately!!!

Look, read the information LBDA.org has describing how to communicate with those of us with LBD.  Those hints are good and will help us with this disease.  If you do not want to learn how to effectively deal with us, then stay away from me.  I do not need the aggravation.  I am trying to stay on an unemotional, even keel, and yo are not helping me with that goal.

My last few posts have become emotional pleas for understanding.  My LBD has progressed, measurably.  I am having issues sealing with this change.  And while I retain most of my ability to communicate these issues, I am loosing my ability to control the negative emotions that overwhelm me.  I realize yelling at people that love me is not conducive to them helping me.  But I can't seem to get through to them in any other way.  Please, read the info from LBDA.ord, and then use it when you interact with me.  I am running out of patience.

Wednesday, January 27, 2016

I have said this before, but no one listens!!

I know I have said this before and NO, this is not a repost!  But it seems, no one hears what I say or they just do not care.

Every time I describe a symptom or issue that I am experiencing, everyone, including my wife says;  I have the same issue.  But mine is different or worse, or more annoying, or better than yours!

Can you see why this is upsetting to me.  My wife says I don;t tell her about what I am experiencing.  Why should I, she is experiencing the same things I am only worse.  Hell, I am not sick according to anyone I talk to!!  Even the Neurologist I see here in Pensacola found out for the first time last visit, that I have issues with stiffness in my legs!!  I have been telling him about that for two years in writing and verbally!!!  Then, last visit HE DISCOVERS I have stiffness in my legs!!  Big revelation!

Look, it is obvious no one thinks I am sick, so, from now on, I am NOT sick.  I am going back to driving and work.   I am going to move out of this place and get a single family house.  I will mow the lawn, paint rooms, fix plumbing, and what ever.   Then, when you find me dead, on the floor or in bed, or in the back yard, you can say, maybe he had something wrong with him!!  Then you will say; Nah, he is faking being dead!  I should be laying there, I fell bad!  I have the same issues he thought he had, but didn't.

But, the bottom line is, I have nothing else to say about my disease.  I am well, no issues, I have never felt better, and everyone else in my life is the sickest person in the world.  I will dedicate my life to taking care of them as long as I live.

I really an fed up!!

PS:  After looking at my earlier post and this one, I can honestly say, the only thing I have in my life is m,y disease, LBD.  And no one is interested in that.   When I could physically do things for others, I was interesting.  Now, I am nothing. ..

Why do I get depressed?!

I am in a self-examining mode.  I have been wondering why I get depressed, filled with anxiety, and angry.  This is not an easy or light undertaking.  Every night and most days, I am depressed.  I never used to admit this fact.  I fought and argued with my neurologist over his assertion that I was depressed.  Now, I openly admit the fact.  And I also admit that is is getting worse.

Last night started the Barrett Jackson collector car auction in Scottsdale Arizona.  This has been my favorite television viewing for many years.  I am a car nut.  Even now, I spend countless hours researching cars online.  Back in Virginia, I was the first person in the annual Virginia Beach new models car show in January!

But, last night, I found myself getting more and more depressed and agitated as I watched the first night of Barrett Jackson.  I felt so bad that I went to bed with an hour and a half of the nights cars still to go!!

Why was I so depressed?  I thought about that all of a very restless night.  This morning, I believe I have a clue as to my depression.  And, most of you will not like my conclusion.  Lewy Body Dementia is taking away all the things I used to love to do.  Not only can't I do the things I once lived to do, I am not interested in them, at all.   Then, the idea that I cannot do these once cherished things, makes me depressed and makes me think more about how my future will go.

Look at the facts;  I am not supposed to drive.  So a Hot Rod is out of the question, not to mention I can't afford one now.  So, cars I once got very excited about are now no longer interesting to me because I cannot use them,  I don't even like looking at sexy women on TV!  I can't do anything about it, so why be interested.  Even my concrete survival house dream is always interrupted by the stark fact that I cannot take care of myself, so how can I live alone on 20 acres!!  And even a massive recall of Military retirees would leave me out!  They will not want someone who has dementia.  Get the point?!

LBD is a cruel disease, that is for sure.  But, the real cruelty has just begun to impact me in the last year.  LBD has me a prisoner in my own body.

So, I now better understand my depression and anxiety.  Maybe you can see this in your own LBD patient.  If so, be kind and understanding with them.  These are terrifying times for us.

Monday, January 25, 2016

FLASH!!! A new test for Lewy Body Dementia

Obtaining a definitive diagnosis of Lewy Body Dementia (LBD) is difficult at best.  LBD is the second most common type of Dementia, after Alzheimer's.  Yet, it is often missed or misdiagnosed as something else including Psychiatric issues.   I recently found a test called "The Lewy Body Composite Risk Score (LBCRS)" developed by Dr. James E. Galvin.   This teat is quite sensitive to suggest that there is a high probability that you have Lewy Body Dementia.  Of course, only an autopsy will confirm that presently.

I also learned that Lewy Bodies are being found elsewhere in the human body causing  issues like constipation and skin disorders.  Since I have sever breakdown of my skin, all over my body, I found this very informative.

I am not a doctor or a research scientist.  And I do not claim to know much about their process.  But, this study is interesting and I recommend you share it with you Doctors, both GP and Neurologist.  It may help and it can't hurt.

PS;  I scores a 10 on this test!