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!

Sunday, January 24, 2016

Billiards, in a retirement community!

We play Billiards every Wednesday and Sunday night here at Azalea Trace.  From 6-8 PM, the two pool tables are very busy with teams playing 8 Ball.  Most of the men are older and BETTER than I am.  Some of the men are excellent and consistent in their game.   Some of us are novices at best.  But, it is a fun and relaxing time of fellowship, stories, and mutual respect.  I truly love and look forward to our Pool nights.

One issue is memory.  Most of us have memory issues with me being the one with the most memory loss.  There are always questions like; "Do we have stripes?" half way into a game!!   I have actually used a stripe ball as the cue ball, buy mistake!!   And no one told me until after I made the shot!!

But, it is fun and relaxing and a level of social relief I have not had for a long time.  This is truly good living.  

Friday, January 22, 2016

Dealing with difficult people

Let me tell you about something that happened here in the Retirement Community that we live in.  Then, let me tell you how it has impacted me and how I react to people like this.

A week ago, or so, we had a couple come and eat lunch with us.  The woman is in my Wife's Bible Study and her husband was on the USS Caron (DD 970) with me.  I had not seen him in 25 years at least.  While we were waiting for the dining room to open, we sat on some couches and chairs outside of the dining room.  My wife had me move one chair to make it so all of us could sit down.  When the dinning room open up, my wife told me to put the chair back where I got it and I was doing that.  I was pulling the chair, with me walking backwards, very slowly.  I did not notice that a small lady, with a walker, was behind me and I bumped into her.  I did not knock her down or even cause her to falter.  I immediately checked to see if she was OK and I apologized profusely.  I explained that I did not see her and I was genuinely sorry.

She began to berate me like I was a elementary school student!  I apologized again!  And she told me I was an idiot and that I better learn to watch where I was going!

After everyone was seated, I was feeling very bad for bumping into this lady and obviously startling her, so I went over to the table her and her husband, who I know, were sitting with another couple.  I again apologized.  She again flame sprayed me!!  Her husband just smiled at me.

Now, the lady that was sitting with the ungracious lady gives me the evil eye, will not return my wife's or my greetings when we pass in the hall.

Now, how this impacted me.  I am an enlisted man.  I worked with my hands, worked long hours, went to war anytime there was one, and acted like an enlisted man.  I am not ashamed of who I am or what I did.  On the contrary, the Enlisted men of our Military are the ones that win the wars, fight the wars and clean up the messes Officers cause.  People like the two ladies I am having issues with think Officers are the best.  They think wars are fought in dress white uniforms, sharply pressed, and that the war stops precisely at 2 PM so they can have tea.  They believe only Aviators did anything of value and that they are the upper crust of our society.  And trust me, there are more Officers and wanabe Officers here than fleas on a dog.  I have never wanted to be an Officer.  I am PROUD to be an Enlisted man and a Master Chief.  I KNOW who did the work that won the wars, and it ain't Officers.  Look at the Medal of Honor rolls.  It is predominantly Enlisted folks!!  Doris Miller, Wayne Caron, and other enlisted men.

This class of snooty, uppity, pious, self centered jerks have always aggravated me.  Yes, I come from poor beginnings.  And this "Upper Crust" has pissed down my neck and told me it was raining all my life.  They never cleaned a Head, went mess cooking, manned a replenishment rig, handled ammunition, of put drunks to bed.  I really do not like people of this class.  Truth be known, I identify more with the Black workers that keep this community clean, operating, and identified as the Best Retirement Community in the South, than I do with the snooty, ungracious people like these two "Ladies".

Now onto the LBD effect;  The episode occurs at 11:30 AM.  My LBD was in check and I did my very best to be respectful, gracious, apologetic, and caring about her well being.  She was just the opposite.  I had been able to let her attitude pass, until that gray headed, snooty, bitch treated my wife and me disrespectfully yesterday and today.  Now, it is 1900 at night, and my social filters are non-existent and I would gladly give these women a class "A" Master Chief Gunner's Mate ass chewing.  Trust me, I can still peel the paint off a bulkhead with my verbal assault.  And my voice is still loud enough to wake the dead.

Why people, who are obviously in the same condition, and position as I am, try to elevate themselves at the expense of others is beyond me.  But, my mental ability to graciously deal with these morons is evaporating quickly.  Of course, if I loose my temper, I will be the one who looses the most.  I am painfully aware of that fact.  Where I am presently, in my LBD journey, I can still control my temper, most of the time.  But, that control is weakening quickly and soon, snooty women like these two and others who think they are the "Landed Gentry" of the world, are going to suffer my verbal anger.

Enough said, since I am very upset and agitated.  

Tuesday, January 19, 2016

Emotions and reality of LBD

I have been in emotional turmoil for the last month or so.  My Brother passed away before Christmas, so that has impacted me also.  But, I have had feelings of my own mortality also.   Issues have arrived that have me concerned.  Issues like my body being able to regulate my blood pressure, temperature, and even my mental stability including hallucinations, feelings of abandonment, and troubles concentrating on today instead of my past.

Needless to say, it has been a difficult time for me.  Yes, I am seeing my Psychologist and he was concerned and made me come back in two weeks.  The next visit is this week.   He can't "Cure" my issue, but he can help me deal with them.

I am not concerned with my destination, but the process of death is frightening.  And, since I am as honest as I can be on this blog, I am being very open.  

This is now the third day of me trying to write this post.  I realize, in theory, that all that is happening with me is due to LBD.  But, my mind says different.  And most of the time, especially late in the day, my mind makes me believe the issues are caused by people around me.  It is 9AM right now.  The sky is clear and the sun is out.  I am functioning pretty well.  That is why I am trying to write now, knowing that in a few hours, all that will change.

The other day we had friends from my past Navy days come over for lunch.  The wife is in a Bible Study my wife leads and they discovered both husbands were stationed on the USS Caron at the same time.  My wife had me move a chair while we were waiting to get into the dinning room, so all of us could sit together.  When the dinning room opened, I was trying to move the chair back to the original place.  I was backing p, pulling the chair and I bumped into an elderly lady.  Not hard, but I startled her.  I apologized profusely!! This little old, pad of a lady flame sprayed me and told me I had better learn to look where i was going!  She yelled at me like I was a 5 year old.  After we were seated, I went over to her table, an in front of all at that table, including her husband, whom I know, I again apologized.  Again, she berated me as if I did this on purpose and I was some interloper who did not belong here.

I spent the rest of the afternoon in my bed!  Hiding!  I did not play billiards Sunday because I did not want to be around people.  She upset me that much.  Now, I should be able to shake this off.  But I cannot!  She should have been more gracious, but she wasn't.  Her husband tried to ease the tension but she was relentless.   And now, I am hold up in my apartment plotting my escape.

I am not logical anymore.  I am emotional and LBD have broken my social and emotional filters.  Jean Harlow said she wanted to be alone in life.  I understand her emotions on that now.  Much of the time, people are the source of my pain.





Friday, January 15, 2016

Sometimes I think; Nobody cares!

I am up late.  My mind is a whir with hundreds of thoughts.  Self pity and depression appear to be close cousins.  Sometimes, I think, nobody really cares about how I am doing.  What brings me to that conclusion?   A number of things, for instance:

No one wants to discuss my disease!  They all just assume I do not have any disease.  They discount my issues or down play them.  Then, they change the topic.  Discussion LBD is important to me.  LBD IS my life, just like Navy was.

Few people call and virtually no one comes over.  Yes, I get some telephone calls from so my old friends.  And my best buddy, Jerry, calls me, or I call him, once a week.  We talk for at lease an hour and I look forward to that call all week.  Visitors, just don't happen.

People think, since I am relatively young, I am faking it!  I guess this goes with the first item, but I have actually been told, I do not have Lewy Body Dementia!!

I take these issues and deduce that no one cases about me.  I may be wrong, but it is how my mind processes these inputs.  But, then again, maybe people thing they can catch Dementia from me!!

As a note of interest.  Today, my Psychologist's Administrative Assistant called and wanted the address of my LBD Blog and the LBDA.org site.  I was impressed, since my Psychologist does not use a computer and did not know about blogs until I told him about them.  Still, I am curious how he will use this info.  Since I trust him, I am not worried, just happily curious. 

LBD is a lonely disease.  And somewhat peculiar it seems.  I want to be isolated, in a cocoon, alone, with a locked in routine, that I control. I do not like crowds and I am quickly overwhelmed by too many sensory stimulants.  But, I crave people that are interested in how I ma doing.  These issues seem to be in conflict with each other.  But, that fits with how my mind works anyway, i.e. yesterday's post.

Oh well, LBD is a journey.  "And I have miles to go before I sleep."  But there are less miles than there were when I started this journey.  And for that, I am glad.

Thursday, January 14, 2016

Agitation

It is 2100 and I am agitated.  Tremendously agitated!  I am in the office, with my headphones on, isolating myself from the Republican debate.  The two miniature poodles have completely disrupted anything I try to do.  The want out, treats, petted, out, treats, whatever.  The dogs, it seems, are my job.  Now, the male is standing in front of me, staring at me.

It is no wonder I never get to relax.  I often find myself in a mental round robin of; "I need to retire!"  Then I think, I am retired!  But not in my mind.

Agitation is not caused by the dogs, people, politics, or anything else.  My agitation is caused by LBD!  I need to tell the neurologist he needs to give me something to deal with this.  I just read an article on this, trying to find a solution.   It seems, agitation is the norm.  I know that, but I have been reticent to take any more drugs.  I was gong to try bourbon.  It used to help me before LBD!   But, it probably would react with everything I take now.  Heck who cares!   If bourbon makes me feel better, why not?!

OK, my logic is off; I know that!  So is my sense of self preservation.  Feeling like I do, depressed, agitated, angry, frightened, disoriented, why not try bourbon.  OK, I have one reason, I don't have any and I cannot drive to the ABC store.  And, my wife won't stop at one for me.

I am in a mental circle fight.  I need to retire, I am retired, I want to drink, no I don't,  I want to move to my survival house, I want to be in Assisted Living!  Then, I price trucks online, and then realize, I don't need one because I do not drive.  I search for homes with land knowing I can't move there.  See!?  I cannot control these thoughts.  I cannot get out of this circular fight.  This is maddening!!

This is my mental world.  And I wonder why I am agitated.  Did I tell you my wife is OCD?!  Big Time OCD!  Like Monk, OCD!!  Today, she had to get her Passport renewed.  Why, I don't know.  We are not going out of the country.  Maybe she is and I was not informed.  In any case, she had lists upon lists for this outing.  Papers from the Internet, what if worries, and plans for every issue she could conjure up in her never resting mind!  Then, she explains every alternative to me in detail!!  I don't even know why she is getting the thing renewed!!  That would be like me renewing my driver's license.  

Again, none of this should upset me.  It didn't before LBD.  but now, I am driven to distraction and agitated as much as a drunk sailor in a Subic Bay bar!  I know this from standing Shore Patrol in Subic Bay!!

Maybe I will just go hide in my bed.  But, if you are a caregiver of a LBD patient, look at my issue, and see what your loved one is dealing with!  Heck, I wish people related to me would read this post.  That need to know too.

But, maybe I will get some bourbon anyway.

Tuesday, January 12, 2016

More hallucinations!

My hallucinations have been increasing in intensity and realism.  Last night, I saw our female miniature poodle, on the bed.  When I reached out to cuddle her, there was nothing there!

That hallucination was very realistic!  She looked and moved just like our female pools.  I would have sworn that she was on the bed.  But, she was not.  That event has rattled me and my wife, who I told tonight.  The hallucination did not frighten me, and I am glad it was not a hallucination of something that did frighten me, because I would have reacted in a violent way!  It was that realistic.

What does this increase in hallucinations mean?  Probably, my LBD is getting worse, progressing, taking over more of my cognitive abilities, and finally, it may single another "Plateau Change".   I will just have to monitor this.  However, I forgot to tell my wife until we went to bed tonight, so my monitoring things is not the most accurate measure!  That seems humorous to me.  I am the only one who has the insight to observe the progress of the disease, and I am loosing my cognitive abilities to monitor what is happening to me!

Well, I used to say;  "This is a great disease.  You forget what bothers you!"  That is not the best outcome when I am trying to chart my progress.

More later, if I remember.

Wednesday, January 6, 2016

I can't remember what I used to do!

The Television series "NCIS" had an episode, a few seasons ago, that featured Bob Newhart as a former NCIS medical officer, like Ducky, that had retired and now had Alzheimer's.  The episode focused on the fact that the "Old Medical Officer" could not remember what he did or how important what he did was.   That episode touched my heart and emotions.

Mentally, I live in my Navy past.  Up to now, I have been able to clearly remember my Navy past.  Lately, I have had difficulty putting my Navy thought in order.  I am even forgetting my in-depth knowledge of the MK 42 5"/54 Gun Mount!  I also understand the idea of loosing the importance of what I did.

Don't miss understand me, I was not a hero, a great leader, or an exceptional technician.  But, as the GMG Detailer, a Command Master Chief, a Gunner's Mate, an Instructor at Gun School, I did the best I could and I helped may Sailors become better at what they did.  But, much of that is slipping away from me.

With that loss, comes a loss of my self-esteem!  I used to be able to do most anything.  Now, there is very little I can do because of physical and mental failures.  Once, while tearing down an old shed at tour Virginia Church, I cut the beam my ladder was leaning on!  Me, the Electric Saw, the beam, and the ladder all came down in a heap.  After that, my neurologist told me; "NO more power tools!"  Heck, I can't even perform sexually anymore.  So, you can see how LBD robs me, and others of their self worth.

My disease is progressing, faster than ever, and I am loosing who I was while I am loosing my cognitive abilities.  I used to say, this was an interesting disease.  No more.  LBD is rendering me impotent in life.

Thanks NCIS, for telling my story!

Tuesday, January 5, 2016

Drowning!

I have been having a difficult time.  I have slipped mentally and emotionally.  I was discussing this with my wife and I described it as; "Being in a room, with no doors or windows, I am completely trapped in this room and it is filling up with water!

I saw my psychologist yesterday because my wife made the appointment.  It was a good appointment and I felt free to discuss all that I am dealing with.  I do not feel better, but I do not feel worse.  He did make me a follow on appointment in two weeks.  Evidently, he believes I still have issues.   And he is right!

But, I am not sure a psychologist can repair what Lewy Body Dementia is breaking.  My ability to deal with anything out of the normal, any change, anything that goes against my idea of what is good and right, is gone.  I do not watch politics and I only watch the news in small doses.  I live in my own mental universe.

I have said my LBD is progressing and I now know I am no longer in control of my surroundings or emotions.   As they say, it is what it is.