Saturday, December 9, 2017

Merry Christmas!

Merry Christmas to all of my family and friends!  Linda and I pray you have a blessed, joyous, family filled Christmas Season!!

Christmas has always been an emotionally difficult season for me.  Long before LBD, I suffered with depression issues during Christmas because of the situation of my birth and upbringing.  But, since I turned my life over to Jesus Christ, Christmas has been easier.  Not easy, but easier on me.  We concentrate on the Birth of the Messiah and not the commercial side of Christmas.  But, LBD has made Christmas more difficult in recent years and this year is going to be even more difficult for me and therefore my Wife!

All of us with LBD have depression and anxiety issues.  But, the social gatherings, noise, activity, and pressure to be happy and joyous make those problems exponentially worse for us.  The question we need to answer is;  How do we deal with our depression, anxiety, and anger, during the many mandatory social events of the Christmas season?

I have read about this topic and have come up with some suggestions.

First; concentrate on the good memories!  We all have Holiday horror stories.  Try to put them in the background and concentrate on the good events you remember from your youth, your early marriage, your children's younger years.

Second; Don't do too much!  Everything in moderation.  We have a tendency to try to do what we used to do when we were 20!!  Trust me, you can't!  Spouses, don't schedule so many events, visits, meals.  And, don't have the entire family over to the house for the entire day!  This will drive your Dementia patient into depression, anxiety, and anger overload!!

Third;  Watch your Dementia spouse closely through the event.  If they become agitated, overwhelmed, tired, or introspective, spend some one on one time with them.  Have a favorite friend of relative get them off in a comfortable cove and quietly discuss how they are doing.  Or, let the Dementia patient take a nap!

Fourth;  Don't schedule events everyday!!  Your LBD patient need time to decompress and rest.

I bring these suggestions to you based on my experiences and what I have read from other professional sites.  I am sure you have other suggestions that I have missed.  The key is, keep the well being of your LBD spouse in mind throughout the Christmas season.  Take time to be alone with him or her.  Concentrate on the good times!  And enjoy each other.  Every day is precious to us.

Thursday, November 30, 2017

I just realized why I like Assisted Living!!

I have said before that I want to move to Assisted Living.  Many people ask me why and I had various answers based on care, comfort, and getting comfortable before I am completely confused by Dementia.  All, I believe are on target.  But, last night I finally got the real answer.  If you are a long time reader of my blog, you know I spent the majority of my adult life in the Navy.  I was a Navy Chief!  I retired as a Master Chief.  I lived in the "Chief's Quarters"!  Unlike any other Military branch, the Navy E-7 thru E-9 community live separately as directed by law.  It was a tradition that dates back to the British Navy.  All Navies of the free world hold the same tradition.  Chiefs berth, eat, and live totally separate from the rest of the Enlisted crew and the Officers.  It is a wonderful tradition that honors those who really make the ship function.  It is also a wonderful way to life that I loved.

Assisted Living and Memory Support communities remind me of the Chief's Quarters!!  Separate dining, separate lounges, separate berthing.  People to take care of your every need.  Even someone to wake you up in the morning!!

At least now, I know why Assisted Living hold my interest so much.  I am so comfortable when I am there.  I feel special, cared for, and at home.  Hopefully it won't be too long before I move back into the Chief's Quarters!  I can't wait.

Saturday, November 25, 2017

Dealing with people is hard for us with Dementia

This evening I went to take out to get dinner.  We do that often because I do not do well with people in the evening.  One of the women I know and get along with was having a birthday.  So, I told her husband we should sing Happy Birthday to her and he agreed.  We all sang and she font angry!  She scowled at me and said: "I did not appreciate that!"  Why, because you are having a birthday?  You must have had some before.   Is it because we honored you with a Birthday Song?  I apologized of course.  But, it upset me and ruined my night.

Look, I admit I do not understand why old women die their hair, wear body filler make up, and try to look 40 years younger than the are.  But, we did not use her age in the song!  But, I guess having a Birthday means you are getting older.  Duh!! You are older than dirt now!  Be glad you are still breathing you self-centered bag!!

For me, dealing with people and all their baggage is overwhelming.  I want to live in a Dementia Care facility where I am with residents that are on the same path as me and a staff that understands me.  I am sick of phony, landed gentry, uppity, snooty, faux socialites that only care about themselves!!  Moving here was a mistake for me!!

I wish I could use some Sailor language here.  But, I will control myself for the moment.


Friday, November 24, 2017

Understanding men!

There is a joke about a young man who finds a "Genie Lamp" in the beach in San Diego.  The Genie is angry that he was woke up and tells the young man he will only get one wish.  The Young Man asks the Genie to build a bridge from San Diego to Hawaii because he was afraid to fly or ride on ships and always wanted to see Hawaii.  The Genie said; "Do you have any idea how hard that would be?!  Pick another wish."  Te Young man then said:  "Oh, I never did well with Women, so I want you to make it so I understand how a Woman's mind works."  The Genie replies;  " How big do you want that bridge, two or four lanes?"

Well, Men are even harder to understand.  Especially men facing their own death.  Those of us who served in the Military in actual combat positions, put our lives on the line and many times came very, very, close to death, without giving it a second thought except for a laugh over a beer later.   But, let that same combat vet be diagnosed with a life threatening disease of condition and he becomes very introspective and he will NOT discuss his fears with his wife, children, or friends.

There is a man who lives where I do who is in tough shape.  He knows he will not get better and is only looking his own downhill journey to death.  Not an honorable death defending our Nation or saving his friends lives, or the ship.  Instead, he is weak, unable to do anything he did for the 34 years he served in the Navy, and is a shadow of his former self!  To discuss this with someone who knew him when he was rough, tough, strong, mean, and the authority on anything and everything, would show him in his weakened state.  Trust me, that ain't going to happen.   So, he is a grouch, difficult to talk too, and disconnected mentally from those he loved and knows.

Men, like my friend and me, need a neutral party to talk to.  To unload on.  A Pastor, a Psychologist, or a Nurse.  But that individual need someone to talk too!!  I have a Pastor and a Psychologist I unload on.  They are both extremely helpful to me and for me.  But, you, the friend, wife, son, of a man facing his demise must connect your loved one to a neutral party.  If you do not, you are not helping your loved one find some happiness in his last days.

Yes, I would have been happier if I died a Combat Death.  But, here I am, facing a much more mundane death.  My Psychologist and Pastor helped me understand I am still the man I was and  that I still have value.

I told my friends Wife the same thing today.  That's all I can do.  I hope and pray she takes my advice.

Wednesday, November 22, 2017

Happy Thanksgiving!

"Boast Ye NOT of Tomorrow"  Instead, enjoy today and all God has brought you.  Even though we have LBD or another form of Dementia, Life is still a gift from our Heavenly Father.  Thank HIM everyday and especially on Thanksgiving Day.

To all my friends, family, and my friends that read this blog;  Thanks for standing by my side through this journey.  I could not have done this without you!

Friday, November 17, 2017

The severe effects of General Anesthesia on Dementia Patients!

I have a friend here at Azalea Trace that has mid-stage Dementia.  Which one is up for grabs seeing that accurate neurological diagnosis are very difficult to get her in East Lower Alabama!  In any case, he fell and broke three ribs about two weeks ago.  Since then, he fell again and broke a hip, which required surgery.  Naturally the doctors used General Anesthesia.  The General Anesthesia has severely and negatively impacted his Dementia!

There are at least two very good medical level articles on the Levy Body Dementia Association Web Site (LBDA.ORG) that address this issue.

My friend will never return to where he was before the surgery!   I am no doctor, but after visiting him today, it is my opinion he will never get out of bed again.  I am upset for him and for me.

If you have a Dementia or are the caregiver for someone with Dementia, PLEASE read the articles on the LBDA.org site about the impact of General Anesthesia on Dementia patients.  Fore warned is fore armed.

Tuesday, November 14, 2017

Overload Monday

We were busy yesterday.  Too busy!  We each had a doctors appointment with our GP, both at the same place.  They were slow as usual and I got agitated!  The, since we were in the town over from Pensacola, we did some shopping we needed to do and ate lunch.  We came home and an hour later had a scheduled Vet appointment for Zeus, the Winder Dog!  All three medical appointments went as expected.  Then, I had to do my usual Monday laundry in the evening to be ready for Tuesday.

Tuesday will not be much better since my Wife has an appointment for a medical test after her BSF Leaders meeting.  I am preaching at the Skilled Nursing Facility for the Staff Chaplain at 10 AM, so Tuesday will be busy too!

Busy days are difficult for me.  I get agitated and angry over any little thing.  Even riding in the care causes me issues!  Maybe because the illiterate morons that live here can't drive!!

A topic of my GP appointment, among many, was my left shoulder.  The rotator cuff is torn and needs repair.  We have known that for a long time.  But the pain is getting worse and I am loosing mobility in my left arm.  I even have difficulties drying myself after a shower.  BUT, haven surgery under a General Anesthesia is not a good idea for LBD patients.  

LBDA has two new articles on this tops that I found very good and very concerning.  The medical evidence is that General Anesthesia accelerates and advances the impact of Dementia in LBD patients.  My GP know this and told me I have to make a quality of life decision.  In other words, is the pain and immobility more of an issue than the possible loss of cognitive ability!  

I have not come to terms with that yet.  My Wife is against the surgery but she does not want me in pain either.  I will Pray about this and seek God's will.

Friday, November 10, 2017

All the thing I can no longer do....

As the sun goes down, my mind gets trapped an an endless thought process of things I still want to do but can't!  Every night I go through this torture.   The thoughts of unrealized plans, dreams, and adventures, mixed with the mistakes, failures, and dumb decisions I made through my life, torture me.

Actual accomplishments, victories, fun times, never come to mind at night.  Just things I never did or thing I failed at.  Yes, I know it is "Sundowning" but knowing what it is does not help me get through the nightly torture.

Lately, some disorientation has been mixed in with this nightly ordeal, so I am confused about timing of events and where I am in the process.  This disorientation has recently been mixed with thoughts of my future!  Yes, that is strange.  Those thoughts are of how things will be as my LBD journey gets more difficult.  Some of those thoughts are coming to fruition now.  Some I know are a forewarning of my soon to be future.

I have written that the recent downturn has been difficult and that is fully true.  But what is to come, will be even worse.  The neurologist that first diagnosed me never told me about what was to come.  Her view was to let it happen without warning.  My thirst for knowledge and the Internet defeated her plan, which not looks like a good plan, in retrospect.

Wednesday, November 8, 2017

Photos of Zeus, the Wonder Dog!





A friend asked me to post a photo of our new friend, Zeus.  Here he is at the Dog Park and in our Apartment!

Tuesday, November 7, 2017

New member of the house!

If you have read this blog for a while, you know my two miniature poodles passed away due to old age issues between last Thanksgiving, (Cherie) and last March (Marcel).  Two weekends ago we attended the Barktoberfest here in Pensacola and even though we said we would NEVER have another pet, a rescue Chihuahua, who is two years old, stole my heart!  When I held him, he chewed on y beard and kissed me!  He has been with us since then.  He is very quiet for a Chihuahua.  He gets along well with other dogs and everyone!  He is a prize and just what I needed.

He loves to walk and loves the new Bark Park here at Azalea Trace!!  He runs around playing with other dogs and chasing the ball, flying through the wind.  He is a joy to watch and have.




Friday, November 3, 2017

One NEGATIVE Nellie!!

When you live in a retirement community, you have to deal with people of many dispositions.  I always try to be friendly and positive.  Some people, on the other hand, specialize in being negative!  People of that ilk can find NOTHING good about anything!  I encounter an individuals like that numerous times each week.  Some of them are palatable and some of them are REPULSIVE!!   The most repulsive of this ilk rode on the Bus with me today.  That individual complained, pouted, and bitched the entire trip to and from our destination.  That individual's negative attitude set me off for the rest of the day!   This individual know everything, knows more than anyone, and is, in this individuals personal opinion, the only person in the world that matters!!   I have had a screaming headache, been grouchy, and out of sorts since I returned to the community.

If that individual is that dissatisfied with living here, they should move.

I told my wife that if that individual gets on a bus from the community that I was going to ride on, I am getting off!!  We can drive to where ever we want and be away from that individuals constant complaining, carping, and wanting everything their way regardless of how it impacts others!!  As a matter of fact, I may move just to get away from that miserable asshole!!

Having LBD impacts my ability to deal with people of this ilk in a civil manner.  I try, but I pay the price for it in a ruined day!  Mom used to say;  "If you can't say something nice, don't say anything at all!!"  I know one person who need to follow that advice.  I never said anything to that individual and I have not, the many times that person has complained, denigrated, and whined, about everything in the world.  But, one day, my filters will be completely off and then, "POW!! Right in the Kisser!!"  as Jackie Gleason used to say.

Sunday, October 29, 2017

The recent downward turn has been difficult!

As we all know, Lewy Body Dementia is a journey of ups and downs.   Recently, I had a significant downward swing that has brought unexpected issues that I was just not ready for.  Thankfully, my Wife has been very observant and has been intone with these changes even though I have not been.

I even have difficulties describing the changes I have recently experienced but I can tell you they are very unnerving.  I am much more emotional and I really cannot tell you why.   My memory has decreased even more and I am now having issues remembering long term memories.   My coordination is worse and I my depth perception and overall vision has gotten much worse.  You know I no longer drive and that is a good thing!

The most frustrating issues of this downturn is that I am in uncharted and unexpected territory.  I just never thought it would be this way!  Yes, I realize my judgment is impaired but I am surprised, shocked and somewhat depressed!  I believe we are now in the more difficult areas of my journey!

Again, my inability to describe what is happening to me is as frustrations as the issues themselves!

Friday, October 27, 2017

Being in groups of people overwhelms me!

When I am in moderate size groups of people and anything is expected of me, that experience, no matter how long it is, makes me extremely agitated, angry, and overwhelmed.  I get very quiet and have a need to escape the group and get to my safe place!  I have had this problems in increasing levels and it is now becoming overwhelming for me.

When I get back to the apartment, I am angry and often respond to simple comments in a very nasty manner!  This normally leads to me going to bed, regardless of the time of day.  My wife see’s this and understands it on a surface level.  But, she often tries to continue as if nothing is wrong but I’ll I explode over something that is trivial!

It IS a large LBD indicator and a reason many of us move to Assiste Living or a Memory Support Community.  It will lead me to that decision sooner rather than later.

Wednesday, October 25, 2017

Some things just don't work!

Last weekend my Son and I went to see my Grandson at Fort Benning.  He is waiting Advanced Training.  My Wife thought it would be a good trip for me and that time alone with our Son would be good.   It was to be with our Son and great to see our Grandson, but being away from my Wife was not a good idea.  I was disoriented and upset much of the time.  My Son is not attuned to the signals I send out.  He is young and on the go all the time.  I am good for one; or maybe on a good day, two; events in one day!

Without recounting the two days away from my Wife, travel or even life away from my Wife and away from home is something I will never do again.  Enough said!

Tuesday, October 24, 2017

I need YOUR help!

I need to get a copy of a DVD that I saw at the Alzheimer's Association facility in Norfolk, Virginia.   The story line was that of a Professional woman who was diagnosed with Alzheimer's while still in her High Profile job.  The video was her personal documentation about her journey from her first symptoms until she no longer could communicate.  I found this video very helpful at explaining the progression of dementia's in general.  I would love to purchase a copy of this video for the Memory Support Group her at Azalea Trace and in fact for all of the ACTS Communities.

So, if you can help, please let me know!!

Why do I ask of this help?  I am getting tired of people questing my veracity!  Enough said!!

Thursday, October 19, 2017

Myoclonic jerking!!

I have been experiencing some leg movement as I go to sleep at night.  Naturally, based on television ads, I thought it was Restless Leg Syndrome.  My Neurologist even agreed.  But, after doing some research I discovered it is Myoclonic Jerking!!  This is a involuntary contraction of the muscles and sometimes an involuntary release of muscles.  In m case, it is involuntary contractions of my leg muscles and it is a common symptom for LBD patients!  Do RLS medications work for Myoclonic Jerking?  I don't know.  But, I sent my Neurologist an email on their Portal and asked Her!  I believe I am providing Her a great LBD education.  I always knew I was a Lab Rat, now I have proof!!

There there is a wealth of information on the Internet from reliable sources about Lewy Body Dementia.  I do not expect my doctors to know everything about every condition and drug.  I believe it is my responsibility to learn as much as I can about my disease and share that information with my doctors and anyone else who is interested.  My health and treatment are at least partially my responsibility.

Sunday, October 15, 2017

Unvarnished Truth!

I have written this blog from my heart.  I have NOT held back in any way.  I know there are folks that read this blog who are not involved in LBD in any manner.   They read it for various reasons and I appreciate their desire curiosity about LBD and me.  But, if you read this blog, you must understand why I write it.  The purpose of the blog is;  1.  To leave a journal of my LBD journey for my family and friends.  2.  To let other LBD patients and caregivers they are not alone.  3.  To educate the medical professionals about the effects of LBD.   While this blog has been recognized a number of times, that is not why I continue to write.  It's nice to be recognized and have great readership.  But it is not the reason I write.  But, thanks!  

Why am I saying this?  Just to make sure everyone know where I am coming from.  LBD is no cake walk.  it is frustrating, angering, gut wrenching, confusing, and self-centered.  


On another but related note;  My recent issues have made me realize I need more care and I intend to seek a move to Assisted Living after the first of the year.  There are financial reasons for that date, but by then, I will be ready in every way.  This move will also help my Wife by relieving her of some of the responsibilities of keeping track of me 24/7/365.  Also, one of my friends here at Azalea Trace said something to me that made extreme sense!!  He said; "People don't move to Assisted Living in time to enjoy it and benefit from the care it provides."  He is correct!  I have seen people delay they moves to Assisted Living until they are so infirm they are quickly moved to Skilled Care.  They never benefited from Assisted Living because they were so infirm they were past the benefits of Assisted Living!  I see a move to Assisted Living as a life extender, both cognitively and physically!

So, there is the unvarnished truth and why I write what I do.  I hope everyone understands.

Dealing with ANGER!

Many things anger me that would not have caused me any issues before LBD.  Some things are just normal life issues.  Some things that anger me are the way people react or relate to me.   I will admit that I expect things to go the way I want them too!!  (Now, that is honesty!)  And knowing things won't go the way I want them to does not help me deal with people that do not meet my expectations.  Instead, I get angry!  I believe this is all normal for someone where I am in the LBD journey.  It is HOW I deal with this anger that is the issue.

I do not want to be a burden to my Wife or others.   So, I hold my anger in!  I do not address it at all, verbally!!  Instead, I internalize my anger until I forget why I am angry!!   Of course, this time of internalization is accompanied by quietness on my part!  I think my Wife knows I am upset although I do not think she knows why.  She never says anything!  She just goes on being annoying in her own way until I forget why I was angry!!

This problem is exacerbated by the fact the my Wife expects everything to go her wall, all the time.  Before LBD, we discussed these issues.  Negotiated, exercised give and take.  Now, because of LBD, that does not happen.  She has never gotten over being angry at LBD.  Her plan for our lives has been derailed.  That has to be frustrating.  But what about me and my expectations?  And that is where my ANGER starts!

Tuesday, October 10, 2017

I was shocked today!

I preached today for the staff Chaplain here at Azalea Trace.  I am filling n for him for the next few weeks because he is on a Mission Trip to Central America.  I am very proud of him and his Wife and honored to be able to help him this way.

When I was setting up for services in the beautiful Chapel in Willow Brook Court, a man came in to the Chapel.  I recognized him from Independent living but he was not the same man!  In a very short time, Dementia, of what type I do not know, has completely changed this man.  He did not recognize me and I could tell from his actions he felt threatened and unsafe in his surroundings.  He was being cared for by one of the wonderful Home Health Professionals here at Azalea and was in very good hands.  Just the same, his appearance and demeanor shocked me!

How could this seemingly vibrant man go sown hill so quickly.  My Dementia journey has been gradual and fairly gentle up to know.  But he obviously has been run over by a truck named Dementia!

His condition has caught seed me to reevaluate my position and my life choices for the future.  I know my Dementia is speeding up and getting more virulent.  Maybe I will be the man who shocks someone ion the near future.

Wednesday, October 4, 2017

Calling my Wife "Mom"!

We had our weekly Memory Support Group today and Kathryn from Covenant Care was our facilitator.  She leads our group the first Wednesday of each month.  She is well versed in Dementia care and has a heart for us.  She was able to engage a number of our attendees in open discussions about their symptoms and that was very constructive.   She was discussing the fact that Dementia patients sometimes see their spouses as nurses, outsiders, or even their parent!  This answered a question I had!!  I have begun to address my Wife as "MOM"!  For instance, we are in the car, she is driving and I will say;  "look at that Mom!"

I would hear myself say that a wonder, where did that come from?  Now I know.  But, it angered me that I did no see this coming!  I pride myself in understanding my disease and helping other Dementia patients.  Instead, I needed help and Kathryn had it!!   am very thankful for her!!

My symptoms are getting more complicated and difficult and I no longer can self-diagnose them.


Tuesday, October 3, 2017

"I have to get out of here!!"

Many emotions rush through my mind at night because of "Sundowning".  Last night, as I was drifting off to sleep, I was SNAPPED awake by an overwhelming need to run away fro where I was!!  I was in a panic and I knew I needed to get away from the location I was in.  For what reason, I do not know.  But it was a real fear, flight or fight, reaction!!  It passed soon enough and I was able to settle down and go to sleep.  But each time I woke up to go to the bathroom, that emotion was in my thoughts and it continued after I got up this morning.

Today is Tuesday and my Wife has her Leaders Group for Bible Study Fellowship, so I am alone.  I had a number of errands to run and a meeting to attend, so my morning has been directed and I have had little time to just sit and think, until now.  But, now, as I write this, I am trying to understand that "Flee" emotion that I experienced last night.  There is nothing here that frightens me, so they would not seem to be the issue.  Just the same, I have no plausible reason for last nights thoughts except maybe, LBD is just finding another way to mess with me.

Saturday, September 30, 2017

The HIGHS and lows of LBD

Today, I have experienced the HIGHS and lows of Lewy Body Dementia.  Azalea Trace has celebrated Active Aging Week and there has been some wonderful activities all week.  Today, we had Hot Air Balloon rides early in the morning, right here on our campus!   I have never ridden in a Hot Air Balloon but today,  thanks to Azalea Trace we got to experience Hot Air Ballooning.  Yes, it was a tethered ride, but we still floated with only the power of heated air!  We were high enough to look over the stately tree tops and see the Escambia Bay!!  It was exciting and exhilarating!   But the remainder of the day has been depressing and difficult to walk through.

The experience of this morning brought back many memories of the exciting and dangerous things I did during my Navy career.  It all was brought to the forefront of my mind, and those thoughts have illustrated to me that I will never do anything like that again and that my life is drawing to a close.  That does not bother me but it is something that is difficult to deal with and I am not really sure I am dealing with it very well.  I miss my Navy buddies and the camaraderie of those friendships.  I miss not being able to go places, drive, take care of my own issues, like haircuts or clothes shopping.   I miss being independent, capable, and in charge.

I have come to understand Pensacola is my final destination.  It is the last place I thought I would end up, but not the worst place to be.  Right now, the emotions of the day have overwhelmed me and It is time to retreat to the safety of my bed.   Maybe I will address this more tomorrow,

Friday, September 29, 2017

A discussion with my wife

We went to to Long Horn lunch today.  I have been trying to get my Wife to eat at Long Horn Steak House for a month!   She agreed today and we had a great meal.  We also had a discussion about my LBD and how she is dealing with it.   Now remember, my social filters are not functioning!  I was talking about the Memory Support Group and how some of the spouses do not take advantage of the information available about the different dementia's.   I then told my Wife she was not taking advantage of information I had discovered and made available to her.  She then told me this;  I want you the way you were, while understand you need to be comfortable the way you are!

That was an eye opener!!  She brought back to my memory how my Dad reacted to my Mom's end days, suffering with Cancer.  He would say;  "All she needs to do is get up and walk around the block,  Ten she will feel better."   My Wife told me, my Dad did not want Mom to be sick and that was his way to deal with it.   She also said those of us with Dementia are each different just as all caregivers are.  I agree with that.

But I do not understand why a Spouse would not want every bit of information about the disease their spouse had, and then use that information to make the Spouse's life easier, more comfortable, and better.   Denying the fact that the Spouse has a disease does nothing to help that person.  It may make the Caregiver Spouse feel better, but that seem selfish to me.   But, I am not the caregiver.

LBD, and all Dementia's are a tough, confusing journey for both the patient and the caregiver.  I believe the more factual information both people have, the better both people will be able to deal with the disease.  Of course, I could be wrong.

Wednesday, September 27, 2017

The confusion and disorientation continues

Today, while my Wife was at her weekly Bible Study and I was home alone, I was gazing out our patio doors and all of the sudden, I was wondering why the cars I saw did not have front license plates!  Virginia has front license plates and you can get a ticket if you don't have a front license plate!!  Then, it came to me that I was in Florida and not Virginia.   The question then became;  How the Hell did I get to Florida!!??

I spent quite a few minutes contemplating that question.  Then, I realized we lived in Florida.  Things are getting confusing, at least sometimes.


Monday, September 25, 2017

I am not in the present!

All of my conversations revert to my Navy life!  I never get involved in any conversation about events of today!  I can change the topic and flow of any conversation to my Navy life!  Today, does not exist in my mind!!   As a matter of fact, I am not interested in the events of today!

This is not abnormal for Dementia patients, but it illustrates to me, and anyone who cares about me, where I am in my LBD journey.   I am comfortable with my memories and experiences from my 40 years with the Navy.   I am uncomfortable with today's events and I don't like the culture of today's America or the World in general.  So, instead of dealing with things I dislike, even hate, I regress to where I am comfortable,

From what I have learned, this will progress even more.  I am OK with that.  As a matter of fact, I welcome it.  Those around me may not like it, but, that is there problem.  I am a the one with LBD!

Friday, September 22, 2017

The impact of a long term disease on those around you

In the beginning, people I knew were shocked, upset, even sad about my LBD diagnosis.  Now, in many cases LBD is a slowly progressing disease.  Especially with the new drugs that are available If and ONLY IF they are prescribed very early which my Neurologist in Norfolk, Virginia did.    And you should also know that LBD is a cyclic disease.  Ups and downs, that occur in an unpredictable manner.  Then there is "Showtime" that occurs when people not normally in the LBD patient's circle are around.  During "Showtime" episodes, the LBD patient seems "normal".

All this being said, it has been 5 or more years since my early diagnosis and people treat me very differential now.  They seem aggravated when I mention my disease as if they are very tired of me and LBD.   People expect me to have all the stamina, mental acuity, attention span and capabilities of someone without LBD!   When situation overwhelm me, they are annoyed!  Even angry and disappointed with me.  They want me to do things and be in situations that overwhelm me and tire me out quickly and leave me wasted!

I realize it must be frustrating to those around me to look and me and believe in their mind I am not sick!  But, they do not see the total picture.  They have watched me slowly deteriorate so they do not realize it is occurring.  For instance, no one can tell me when my hair turned grey and then white!  It just happened over a long period of time.  Well, that is how LBD has robbed me of mental and physical abilities.

Today after some running around doing some financial things, we w net to the commissary.  My wife likes to keep bottled water around.  We bought a 24 bottled case of water and I cannot carry that any distance at all.  That fact escaped her mind.  The fact that I had to get a cart to take our small grocery load to the apartment was just not in her mind!  She was frustrated with me.  Much like my previous post, she forgets I am impacted by LBD and wants me to be "ME".   When I am not "ME" she unconsciously gets upset.   It is not her fault, it is a normal reaction to a situation she hates.

But, like I said in my last post, these episodes take my DIGNITY from me.  I am reduced to someone who is worthless!

Patience for the LBD patients spouse, family member,  or caregiver is the most important quality!!  Compassion is nice, but patience is mandatory!


Monday, September 18, 2017

Advice for Caregivers and Spouses

Many of you know I spent 40 years with the United States Navy.  I was the Force Master Chief of the Surface Forces, Atlantic Fleet, a Command Master Chief of a Destroyer and an A-6 Air Squadron, Leading Gunners Mate on numerous ships.  The Gunner's Mate Detailer, and Instructor at Gun School, Great Lakes.  As a Civil Servant for the Navy, I was a Gun Mounts and Turrets Tech Rep, The Gun Systems Replacement Manager, the Programs Branch Head, the Search Radar Branch Head, and had numerous collateral duties of note, like the recovery of the USS Cole and the repair of the MCM's in Bahrain.  Needless to say, I had a very impressive, responsible, productive, Navy Career.

Now, my cognitive skills are not what they used to be and it shows, everyday.  The challenge for the caregiver or spouse is to NOT treat me like a mental midget!  A more correct way to express this is to say;  Spouses and caregivers should respect the Dementia Patients DIGNITY!  

I try, everyday, to be helpful, useful, and productive.  If I am asked to do something, I do it to the best of my ability.  And, although what I produce, write, make, may not be grammatically perfect, written the way you would write it, or done in a manner you would have, please don't redo what I did.  If you do not want to accept what I do, don't ask me to do it!   This treatment causes me to be angry, resentful and to withdraw from all contact!

Telling me I did not meet your expectations, through your actions, facial expressions, or comments, does nothing to make me feel useful or wanted.  Instead, those actions invoke feelings of uselessness and give me the idea I am not wanted.

Does this sound a little sensitive to you?  Well, I am sensitive.  I was a powerful man, able to do things most of you can't even imagine.  When I said things, brought forth facts, and made decisions, high ranking Navy Officers and Civilians listened and most often acted!!  Now, it seems there is nothing I can do right and no one that listens to me.

I have lost my Personal Dignity!

If you are a caregiver or spouse of a Dementia Patient, read and heed!

Saturday, September 16, 2017

Saturday night update

As I said in the last post, the MRA showed all was normal as far as the blood flow in my brain.  That was wonderful news.  As the lower dose of Effexor takes hold, it seems my headaches and BP are decreasing, very slowly.  I have dealt with a "Boil" on the back of my neck for 11 days, that required medical attention every other day.  They took my BP each time and except for one day, it was in the 139/90 range.  That is better tan a few weeks ago.  I still get short, intense headaches when I cough or sneeze.  But, all in all, I think things are going in the right direction.  I even went and played Pool last Wednesday.  The first time in at least three months.  I consider that good news since I have been pretty much anti-social for a while.

This may be one of the signature LBD positive swings I have experienced since I was first diagnosed.  I have learned to appreciate these respites and fear them at the same time, because they always lead to a big downward turn!  But, I will enjoy the good times while they are here.


Tuesday, September 12, 2017

MRA Results and other issues

Yesterday, I had an MRA to see if I had any vascular damage in my brain, possibly caused by high blood pressure.  Praise God, there is no aneurism or arterial weakness detected!  While I was not worried, I was concerned.  I can honestly say, it is only God's providence that has kept me through this disease.  That being said, what next?

I asked my neurologist to address the high BP issues.  I do not want to increase my Effexor dosage so some sort of BP med seems to be in order, on my mind.  I truly hate what Effexor did to me and I blame that on the so called neurologist  had when I first moved to Pensacola.  He elevated my Effexor dosage much higher than necessary.  I trusted him and He violated that trust.  Never again!

On other issues, I am still dealing with this "Boil" issue.  I still have a drain in the incision and while it is decreasing, it is still draining.  Having the drain reinstalled every other day in painful and annoying. Hopefully, tomorrow will be the last visit for this issue.

Evenings are getting more difficult.  Noise causes agitation and anger in increasing volume.  More and more, television viewing is bad for me most of the time.  Loud commercials seem to dominate television.  News programs are mostly commercials and inane dribble.  Local news is nonexistent her in Pensacola.   I find myself in bed, earlier and earlier.    Bed is my safe area.

I hope the headaches decrease soon.



Wednesday, September 6, 2017

The Azalea Trace Memory Support Group

We started a Memory Support Group here at Azalea Trace about 6 months ago.  It is made up of individuals that have a dementia or some dementia symptoms.  The basis of the group is self-support.  We discuss our symptoms, how we are dealing with those issues, and get feedback from other group members that either have the same issues or are earlier in their Dementia journey and want to know what the future may hold.  We have had a number of Health Professionals meet with us to educate us on Dementia issues and related health issues like choking, falling, exercise. 

Today, our group had a luncheon with the new Director of Azalea Trace, Ms. Tammy Hardy-Farber has extensive training in Dementia care and is very up to date on the new care methods!  She gave us some information of the new construction of the extension of our Skilled and Assisted Living facilities.  Both of these communities will have Dementia Care Communities.  This is exciting news and very much needed.

I love the fact that our Director and all of the Staff here at Azalea Trace support or Group.  Tammy especial cares about Dementia care since Her Father in Law died of Alzheimer's.   She is a visionary in Dementia care!  We are truly in good hands!!

Tuesday, September 5, 2017

Another health issue

The last couple of weeks I have been dealing with "Boils"!  I have not had a Boil since I was 6!  I have terrible memories of my Mom lancing my boils with a razor blade.  No Novocaine!   But, today, we went to the Urgent Care facility to have this Grande Boil felt with.  Naturally, that meant lancing it.  Needless to say, it was brutal, even with Novocaine!!   The Doctor pressed so hard on the Boil to get some of the stuff out that my neck muscles are sore!!  He told us "Boils" are very common in Florida!!  Who knew?!  I bet the Tourist Association does not include that in the "Come to Florida" brochure!

And, to add insult to injury, I have to go back tomorrow morning to have the "Packing" changed!!

Thursday, August 31, 2017

A much anticipated visit!

My Sister, from Cleveland, came for a short visit this week thanks to Her son and Daughter's generous gift of a flight to Pensacola!  It was  Wonderful to see her.  We went to Cleveland last year but she was in the Hospital the entire time.  Since then, she has miraculously recovered!  She looks 20 years younger and much healthier.   We had a great visit, including a big dinner with our Son and His family.  What a great night.

She departed very early this morning and I took a nap when we returned to our apartment.  I am completely exhausted!   Since I am so dependent on my routine, as most Dementia patients are, any disruption is difficult.  Also, you may understand the concept of "Show Time" in LBD patients.  Well, I stayed in "Showtime" for four days!   That wore me out.

Still, I am so happy she came to visit and I would rather have her here for another four days regardless of how tired it makes me.

So, I will recover, slowly.  But I will miss her company for a long time.

Another note;  My MRA is final scheduled for 12 September.  We will see what that reveals, if anything.

Wednesday, August 23, 2017

More MRA info

The Internet is a wonderful source of information.  I did some research and depending on the type of damage in my rain, if there is any at all, there is an option of using a stint, much like they do for heart blockages.  But, in the brain aneurysm case, the stint strengthens the blood vessel.  Of course, there is also the option for brain surgery that requires opening the skull.  But that seems to be for the occurrence of bursting of the aneurysm.   So, there are options, again based on the severity of the damage.  And again, there may not be any damage yet!  We will just have to wait and see.

What will we do if the MRA show problems?

One of our readers, Ms. D, asked me what I would do if the MRA show an issues in my brain.  The honest answer to her question is; "I don't know."   It all depends on what is wrong and what the odds of of a successful repair.  Of course, there is the issue of General Anesthesia as it impacts LBD patients.   To refresh your minds, it is recommended that LBD patients refrain from surgeries that require General Anesthesia because in more than 60% of the cases, it accelerates the Dementia.  In more common terms, I was told I would not wake up in the same time zone! 

So, the answer to Ms. D's question is;  "We will wait and see."  I have given this much thought since the issues first started.   When I am alone, in bed, I have ran through all of the possibilities.  But, there are still too many unknowns for me to make a definitive decision.

Tuesday, August 22, 2017

You Don't Have Dementia!!!

I have been told so many times that I do not have Lewy Body Dementia that it has become "Fighting Words" for me!   Today I went to a Navy Cryptology Museum here in Pensacola with another resident from where I live.  He asked me to go because he needed my Military ID care for access to the base!  He was honest about that.  He drove, sort of   Honest, if he can drive a car on the road, I can drive a car in a NASCAR race!!

During the ride home, he told me I did not have Dementia!   How would he know, he was a Cryptologist!?  But, he is old and I let it pass.  But, his comment made me do some research on Dementia.  One of the symptoms of Dementia patients, according to the Alzheimer's Association, is that the person with Dementia, lives in the past they are comfortable with.  In other words, that comfortable past is what they talk about and think about most of the time.    I had just spent two hours talking about my Navy experiences!!  Before that, I spent 90 minutes on the telephone with my BEST Friend, another retired Navy Chief Gunner's Mate,  talking about our Navy experience, old Shipmates, and Gun Mounts!!  Get the picture?  Not to mention that every exciting event in my life, happened in or was related to the Navy.  So naturally, I talk about them anytime I get a chance!

My dreams, what I think about before I go to sleep, what I think about when I am awake, is Navy!!  I am completely unattached to today's world, with the exception to what is occurring to our Navy ships. But, I apply my past knowledge to their plight!

I have most of the other symptoms, but this one is something anyone who knows anything about Dementia should recognize!  Especially someone who spent two hours alone with me!

As Jackie Gleason often said;  "One of these days, POW, right in the kisser!"


Monday, August 21, 2017

Latest test

With the head pain issues and high BP, my neurologist has decided to order a MRA of my brain.  They are worried about possible strokes and the head pains concentrated in the left side of my head as I wrote about before, have them worried.  The MRA test that is ordered looks at the blood vessels in my brain to see if they are clogged or bulging.  Since the headaches have not decreased, I believe this is a good course of action.  I will keep you informed.

Friday, August 18, 2017

How things are progressing

I am BLESSED  to have a Neurologist's Office that is proactive and very caring.  My Neurologist is young and embraces technology.  They have an email portal that enables me to have near realtime communications with the staff.  Since I went back on Effexor, and even during the time I was off Effexor, I kept my Doctors informed of how I was doing and the issues I was having.

I told you before that during the time I was off Effexor, my BP spiked and caused me headaches, dizziness, and other issues like muffled hearing.  Well, the BP is lower but not where it was before I went off the mega dose of Effexor.  That is because of the autonomic issues in my brain due to LBD.  However, my Neurologist is worried that the earaches that increase when I sneeze, cough, exert myself, and get my head lower than my waist, may be a symptom of something going wrong in my brain, de to the increased BP.  So, they have me monitoring my BP and headache location and intensity and then reporting it, daily, on the email portal!!   Not bad.

The head pain is located around my left eye, left forehead area and radiates behind my left ear.  It intensifies when I cough, sneeze, exert myself, or get my head lower than my waist.  Why, I do not know.  However, the neurologist told me in an email she was probably going to do another brain scan and possible put me on a mild BP med.  Makes sense to me.  The good part is, I do not have to go into the office to get this information!!  Isn't technology wonderful!!

Thursday, August 17, 2017

Back on Effexor; Update two

It has been a couple of weeks since I went back to taking a low dose of Effexor XR.  Many of the negative issues are gone.  But the headaches that come on when I sneeze, cough, or bend down with my head lower than my body are still there.  Those headaches are sudden and sharp, located in my forehead area and behind my left eye.   My BP has dropped to 135/85 when I am sitting in the chair, an improvement over the 160/110 readings before I went back on Effexor XR.   This issue is directly related to the Autonomic Dysfunction issues caused by LBD.  I am a text book case!!  The Neurologist is concerned about them and is considering placing me on a BP med and ordering another, more specific, brain scan.  I agree with both of these approaches.

I am also experiencing agitation, anger, and angry outbursts, but not as severe as I was before I went back on Effexor XR.   This is an balancing act.  Getting me back in physical and emotional balance while trying to retain some emotional release.  I do not envy my neurologist!

Wednesday, August 9, 2017

A pending trip

Our Middle Grandson is in Army Boot Camp at Fort Benning Georgia.  This weekend is Family Weekend.   He is close to graduation and I guess the Army does things different than we did in the Navy in 1969!  We are going up, alone with His Wife, and Parents.  It is only a 3 hour drive, so that part is good.  But my Wife's preparations for any trip, be it a week or a month, is a painful litany of lists, walking back and forth, looking in every nook and cranny in the apartment, and asking me a hundred time what outfit she should wear.   She has always been a very nervous traveler.  And it has always bothered me, but no, with LBD, her gyrations now drive me crazy!  She has to pack enough for a month in the arctic!   I take two pair of skivvies and a tooth brush!  But the most disturbing part for me is it has lasted ALL day!!  And now into the night, my most difficult time.   I have tole her this many times. to no avail.  She does what she does!!  She wants to be equipped for any happenstance!  Heck, I never took as much stuff on an 8 month deployment as she does for a two day trip!!

I hate travel now.  I never really liked travel, but now it is a bridge too far and the preparation is too painful.   But, once there, I hope we will have a good and interesting time.   Until then, I have to endure the skittering around and the constant quest to take more things!

Tuesday, August 8, 2017

Neurologist visit today

We met with my Neurologist today.  She is a caring, professional, medical professional that I respect and trust.  We discussed the unfortunate Effexor experiment and how I am doing now that I am back on a much smaller dosage of Effexor.  I AM doing better but she reserved the right to increase my dosage slowly and cautiously as we see how I progress.  My BP was down, now 130/80.  Much better than 160/110!!   I am also becoming less agitated and grumpy.  All good things.  I am having less issues regulating my body temperature and  I am having less issues regulating my bowels.  SO, things are getting better.

We also discussed the brain CT scan that was done a few months ago.  She was able to get the previous scans from my Virginia Beach Neurologist.  The comparison shows some deterioration, but not major deterioration.   The "Black Holes" are still there and increasing some.  Again, that is to be expected.

It was a production, informative, visit.  I am feeling better and I realize I was foolish to try to get completely off Effexor.  I promise I will never try to play Doctor again!  Trust me, the three months of misery taught me a valuable, painful, lesson!!

Sunday, August 6, 2017

Back On Effexor; Status Update

I have been back on Effexor (37 mg) for three days.  The Brain Zapping has stopped.  That is a wonderful thing!!  I have not had my BP taken, so nothing to report there except my ears are not as clogged with pressure.  So, that is positive. I still have headaches but not as severe and they go away if I lay down.  I am still grumpy during the day, but after I tale my Effexor at night, I get more mellow.  All positive so far.   I have an appointment with the Neurologist this Tuesday, so we will see what that brings.  More later.

Wednesday, August 2, 2017

Back On Effexor

As I wrote before, the grand experiment of stopping Effexor has come to an end, today.  I went through a controlled draw down of Effexor starting 14 May.  I was on 225 mg of Effexor, a very high dosage according to my Neurologist and what I have researched.  The plan was to reduce the dosage to zero over 3 weeks.   May 28 was my last day on Effexor.  The side effects of stopping this drug have been terrible as I have written.   Yes, I did regain my ability to express my emotions.  That's has been a good and bad issue.  I also regained my sexual functions.  But, the autonomic portion of my brain, which had been diagnosed as dysfunctional, went completely wacky.   My BP spiked in the second week of the draw down causing headaches, ear ringing, loss of hearing, and severe dizziness.  I also experienced difficulty regulating my body temperature.

So today, I took my first Effexor pill in 10 weeks.  I am on 37 mg, a far cry from 270 mg.  The goal is to return my BP and other Autonomic functions to as close to normal as possible.  If I have not written this before, Effexor has been found to have a positive impact on Autonomic Dysfunction.  That discovery was a surprise to my Neurologist and me.

My hope is that I will retain some emotional release and some sexual function along with regulating the Autonomic Dysfunctional issues.  Again, we will see.  I also hope the Brain Zapping will subside! While it is less than the beginning of the draw down, it is still there, still intense, and still annoying.

So, the gran experiment is over.  I gave in or gave up.  I cannot defeat Effexor or live with the damage it caused me.  I wish I could tell the Neurologist that increased my dosage to the dangerous levels, what I think of him.  But, discretion may be the better part of valor.

I will lee you informed.

Sunday, July 30, 2017

I have decided NOT to fight anymore

I was trying to go to sleep last night, and as always, I was reviewing my day, my month, and my life.  It came to me, that is is time that I stop fighting.  No, not Fist Fights, but that constant emotional, violent, interaction with people, things, environment, and events that make up life.  For instance, a couple of weeks ago, I got extremely upset with the local Subaru Dealer's Service Department.   And, I have had a running issue with the maintenance department here at Azalea Trace.  It came to me last night;  I am flailing against Windmills! 

I cannot change anything or anyone.  So, why try.

And, since I have had some serious BP issues lately, the stress of fighting everything I used to think was wrong, unjust, or unfair, is not good for me.  For instance, today after Church, I went to the Nurses Station to get my BP monitored because I was dizzy along with all the other BP issues.   I cannot extend my life.  What I want to do is improve how I feel while I live!  Like I have said before, I am tired of feeling so bad!

So, I am going to try to let life proceed on it's own without my intervention.   I am just not going to fight anything, anymore.


Thursday, July 27, 2017

Noise makes me angry at night

My wife has had a summer project to organize 45 years of family photos!  She has worked very hard on this project and often chooses to work well into the night.  I understand she wants to get this project completed.  But, believe it or not, photo organizing can be very noisy!   And the noise is amplified as the night progresses. 

She is up and down, tearing papers, opening and closing photo albums, in an increasing crescendo as the night progresses.  To accomplish this project, she required the television to be ON!  Not that she is watching it, but she likes the back ground noise.  Well, there are some commercials on the television that are very loud, with people screaming, that annoy me terribly.  With all the photo albums spread all over the couch coffee table, and floor, my wife cannot find the remote to mute the sound when these terribly annoying commercials attack me!  Get the picture?!

I realize, now that it is mid-morning, that it is Me that has the night issues and not her.  But, that does not help me at night.  More and more, I realize I need to be in Assisted Living/Memory Support for my sake and hers.

LBD is picking up steam!


Wednesday, July 26, 2017

I give up!

Today, I decided to go back on an anti-depressant medicine.   The brain-zapping has decreased but nit stopped.  My blood pressure has not even began to go back to where it was before I went off Effexor.  My ear ringing has not decreased, and I am agitated and angry most of the time.   Hopefully, going back on an anti-depressant will help me back to what used to be normal.

As far as my BP, my research has revealed that Effexor does help with Autonomic Dysfunction, so maybe that issue will get better.  I also hope the brain-zapping and ear ringing goes away.  But, I mostly hope my anger and agitation go away.   Being difficult with my Wife is not good and not the way I want to be.

I sent an email to my Neurologist late this afternoon.  I am curious about her reply and drug of choice. I gave her my preferences;  No weight gain, limited sexual dysfunction, some resemblance of emotional release, and as low a dose as can be effective.  We will see.  Soon, I hope.

Tuesday, July 25, 2017

How I see things

Individuals with Dementia, especially Lewy Body Dementia, have perceptions that are not true or even based in a loose interpretation of the  facts.  I suffer from this.  It may be related to hallucinations.  I am not sure.  But, I know I have beliefs that come and go, that are not true, even though I think they are.  When do these perceptions occur?  Mostly at night, and especially when I am trying to go to sleep.  The perceptions cause my heart to race, my agitation to increase, and also cause me to get angry!  None of these are good for me. or anyone around me.

One of the issues of perceptions I have written about before is loss or theft of our savings and money in checking.  Truthfully, I do not manage our finances or even understand them.  But, at times, I am sure someone has their hand in our cookie jar!!

Another perception I have is no one really cares about me!  This normally manifests itself as a feeling of being abandoned, unwanted, and as a burden to everyone around me.  During these times, I want to be alone, living away from everyone, and isolated socially.  This is strange for a person who once was a hyper extrovert!  But, it is a perception that overwhelms me every night and most times I lay down to take a nap.  I have this all consuming feeling of being useless, unwanted, a burden, and someone everyone want to be rid of!   This issue has put my wife under extreme stress, even though she tries to hide it.  I have not discussed these perceptions with her, but she sees them.

We have an appointment with my neurologist in two weeks.  My views  will leave there with some new anti-depressant drug to try.  I am clear enough to know being off the anti-depressant is not working!  I have tried to research some of the anti-depressants out there, but I have had no success.

I believe and even hope, that sooner, rather than later, I will be living in Assisted Living, alone, away from noise, screaming television commercials, and people.  But, because of policies here where we live, that will have to wait until January 2018.    And no, I don't think they give waivers.  

Trust me, the later innings of this LBD game are brutal!!  And, a slough as I WAS,   I am no longer able to battle this foe.  I am defeated both mentally and physically.

Wednesday, July 19, 2017

I am extremely tired of feeling so bad!

My head is pressurized,  cannot regulate my body temperature, I have no idea what my BP is because I quit taking it weeks ago, but my hand and feet are freezing to the touch, My back hurts, I am having problem hearing because my ears are clogged, I ache all over, and I feel as bad as I have ever felt in my life.   Truly!  I did not feel this bad after my colon surgery!   I am also having increasing issues controlling bowel and urine.  I have had these issues in the past but they are increasing.  Emails with the neurologist have not been fruitful and my GP got her degree from a Cracker Jack Box!    Real medical care in Pensacola, or every south of Atlanta, west of Miami, and east of Houston, is nonexistent!  Not to mention, most doctors I deal with don't even believe or care that I am suffering.

Am I overstating things?  I don't think so.  After 6 years in this lost land, I have yet to find a doctor of any type that I would trust to lance a boil!  Honestly, I trust Navy Corpsmen more than I trust Doctors in the South!!

The unemotional truth is, I am getting worse.  The LBD is progressing and I am feeling the results of that progression.

Yesterday, our Grand Daughter in Law, who is an RN student came to visit.  I really love her and appreciate her attitude towards my disease.  She real cares about ma and asks probing questions to determine how I am doing.  It was great visit.

So, how this goes is anyone's guess.  I am going to contact the neurologist again and see if there is nothing we can do to help me feel better.   I do not feel confident this will succeed.

I just emerald my neurologist with all this info.  We will see what tomorrow brings.

Saturday, July 15, 2017

Perceptions verses reality

Recently, I had our Subaru serviced.  I had it in my mind "Perceptions" that the service was not done correctly.   That "perception" has haunted me and upset me the last few days.   I even sent a rather "Hot" email to the service manager.   I tried to tie a nap today and my "perceptions" kept me awake and agitated.   So, I decided to open the hood and do my own inspection.  I found out I was wrong.  My "perceptions" were incorrect.   I sent the service manager an email apologizing for the portion of my complaint that I was wrong about.

The LBD issue her is, my mind manufactures issues that do not exist!   It is normal and expected, since I have done my research on LBD.  But, it is still very upsetting and completely impossible for me to control!  Only when I am in a phase of being as near normal and cognizant of reality as I get, can I reason out when I am wrong.  The question is, will I fall back into my "perceptions" as the evening becomes night?

Friday, July 14, 2017

Death, comes to all of us

Unless Jesus returns soon, and he may,  we will all face death.  That is, our passing from our earthly body to our Resurrection body.  The make up or that Resurrection body is determined by our relationship with Jesus Christ.

Think about that.  I do, often!  You either believe Jesus was the promised Messiah that died for our Sins and who's blood washes us clean.  If yo believe that, you will stand before God, represented by Jesus, the King of Kings and the Lord of Lords.  If you do not believe this, then you eternity will be torture.  Again, the time to decide what you believe is right now!

I have come to the point that many of the entertainers I liked have died.  I don't much like what they call entertainment today.  Most of my friends, family, and professional icons are dead!   My mentors, leaders, my friends, those who taught me, trained me, corrected me, and encouraged me are all gone, or almost all gone.   I miss them, their friendship, mentorship, and truthful, honest opinions.  I have very few people I can turn to for advice, guidance, strength, and friendship today.

I am a dinosaur.   Extinct, looked down on, treated with disrespect, misunderstood, even despised!  I have nothing of perceived value to add to the world, according to the folks I live around and the world I live in.

I have written about past friends that are gone;  Jim Smith, Bill Mowery, Vern Van Matre, Harold Wheeler, Kenny Colden, Joe Donnell, Dave Kelly, My Dad, Pete Schaffer, Sonny Mills, Harry Fresch, My Mom, and so many more that the emotions are overwhelming!!

Soon, I will see many of these folks.  How do I say that?   Since I stopped taking Effexor, my emotions have returned and also by perspective of the progression of my disease.  Effexor held me in a place of suspended emotional animation.  I was a Zombie.  But, now, along with the tears, comes reality.  I am OK with that.  Maybe even at ease with it.

I have sinned.  But Jesus has washed my sins away.  I have done some things of value and some foolish things.  But, only what I did for God will stand.  I am sure of that.  And I am glad of that also.

We recently went to the Seacrest Wolf Preserve n Florida with our youngest Grandson.  It was a surprise High School graduation gift.  We took the VIP tour and had over three hours ,just the three of us, alone in wolf families.  Many of the wolves came up for petting and some of them actually kissed us.  The wolves particularly liked my beard and liked to "Kiss" me.  While we were with the arctic wolves, the tour guide told us the Alpha Male would not come out to us.  He also said the Alpha Female probably would not make contact with us.  Well, the Alpha Female mauled me for attention.  She even laid on her back and let me rub her belly while she gently chewed my forearm.  The Alpha Male came close to me to watch the love fest.

The tour guide said I must have put off some "Positive Vibes".  The truth is, and I did not say it then, is;  Animal know when humans are sick, and maybe approaching the end of their earthly life.  I believe that is why I was treated so well by all of the wolves at Seacrest.  Again, it's OK with me.  I have had an exciting life.  Done things most men can only dream of.  I have had a wonderful Wife to share my best time with and a Son I am proud of.  The end of earthly life is the beginning of Heavenly life!!  I am ready!

Why do I write this?  It is part of my LBD journey and where my mind has been for awhile.    Thanks for sharing this with me.



Thursday, July 13, 2017

Evaluating loneliness

I have written before, may times, about being lonely.  I have no one to compare life's experiences with.   As a Navy Enlisted man, we call that telling "Sea Stories".  Now, as a primer to Sea Stories, I need to educate you that all Sea Stories begin with; "This ain't no shit"!   I talked with one of the few fellow retired enlisted men here, but he has nothing to talk about!  He never did anything, went anywhere, influenced anything or anyone, in his 20 year career.   What the Hell did he do?!  What a boring asshole!  I don't think he ever got drunk or hit anyone in fight!

My wife is tired of my sea stories, even though I have told her things I NEVER told her before!  Those things must have skilled my mind before now!  But, I have no one else to talk too.  This does not help with my mental issues related to my LBD and the terror of Effexor withdrawal.   Yes, I know I am flogging a dead horse!!  But, I am lonely, bored, and without mental stimulation.



I cannot deal with life and people anymore!

Normal things in life now cause me to get angry.   Today, we went to get the oil changed at the local Subaru dealer.  It is where I both the car and in the past, they have had a good service department.  But, lately, the changes they have made in their service staff has made their service department just another welfare office!!  They have always washed cars as part of the service.  Today, the female service writer, who knows as much about cars as I know about orthopedic surgery,  told us our car was ready.  We paid, and when we went out, I noticed the car was not washed.  I asked the other female service writer if the stopped washing cars after service and she said no.  That pissed me off!   I walked back to our car and told my Wife I needed to leave right then!  Leaving was better than me blowing up!!  At least I could reason that out.

This is just an example of my inability to deal with simple issues in life.  I have lost my temper because of people talk loud outside of our apartment.  I get angry at bad drivers and yell at them, people telling on cell phones and not paying attention to business, and other simple issues.   Things that I believe are wrong make me angry and I react to that anger.

I know this is because of the progression of my LBD.  I also know it is also related to the withdrawal from Effexor.  The question is, what can I do about it?!  I have emailed with my Neurologist, yes that is the new way for a doctor to interact with patients, and she has not offered anything I consider valuable.  But, this frustrates and angers me also, since medical treatment in Pensacola Florida is as good as medical treatment in a mid- level US City in the 1940's!!

So, I am in a struggle that shows no sign of improving.  Maybe, keeping me out of contact with people and society is what we will come too.   We will see.  I am just reporting the progression of my condition.



Tuesday, July 11, 2017

Emotional issues, as they unfold

Especially at night, I have emotional issues that are related to LBD and beginning to impact me more and more.  Doing my "Due Diligence" research about the emotional issues related to LBD.  For instance, I have beliefs, not feelings, but actual beliefs that an individual is taking our money.  Depleting our accounts.  Do I feel this way all the time.  no.  But especially in the evening and as I fall asleep, those beliefs take control of my thoughts.  There are other emotional issues that I cannot remember at this point.

Now, I will tell you, this is normal for Dementia patients.  So, I am normal.  It is a normal progression of my LBD and that keeps me from getting frightened by the symptom.  I believe knowledge is power over this disease.  The more we know about what is going to happen, the better prepared we are to face it.   Websites like LBD.ORG and others are great sources have documented symptoms of LBD.  Issues other LBD patients have dealt with.  We need to have those facts at our disposal!


I am really becoming a HAND FULL for my Wife!

Since I have been off Effexor, I have become more emotional, angry, agitated, dissatisfied, and vocal!! I yell at drivers,  and recently chastised a young mother who was letting her 18 month old son make every effort to become "Road Kill" in a Target parking lot while she tacked on her cell phone!!  If we had not stilled the traffic, that little boy would have been dead!!

I also, recently, flame sprayed a staff member for telling me I did not need to use my cane!!  I believe she is in for psychological treatment!

The bottom line is, I am angry and no longer bashful about letting others know.  I often lament the fact that I hate Florida, the people in the community we live in, and not being with friends I made over 40+ years connected to the Navy!!  I actually feel sorry for my Wife and apologize often!  She is in a terrible spot!!

This is new for recent times, but not new in my life.  When I was in the Navy, I was not bashful about letting people know I had serious doubts about the purity of their gene pools and their parenting!!  But, I am sure my Wife thought those days were over.  Surprise, they're back!!

I just sent an email to my Neurologist discussing this and my BP/ Body Temperature, Urine control, and other Autonomic Dysfunction issues.  I am anxiously awaiting her response.


Monday, July 3, 2017

Loneliness, depression, being alone

Tomorrow is the 4th of July!!  A day that we used to grill with friends, tell Sea Stories, drink beer, and have fun.  Boy, do I miss those days!!  I miss my friends in the Norfolk area.  I miss the Navy connection.  I miss my Church friends there.  I miss being in Virginia.

Yes, Azalea Trace has a big indoor, holiday dinner tomorrow.  We will eat with some folks we are acquainted with.  I say it that way because I have never made any friends here in Florida or at this CCRC.  Since we are younger than most, there is no age connection.  And since Linda and I did not grow up rich, with servants, gardeners, and nannies, we have no connection there either.  And, since I am surrounded by Military Officers, mostly Reserves who never did anything, I have no Military connection.   I am alone, lonely, and with no hope of ever having a friend.

I told my Wife that one of my biggest frustrations is things are wrong in my life, and while I can identify them, I cannot do anything to change what is wrong!!   Life is much more difficult that I ever experienced before.   I miss my life!!

Maybe I am just difficult to get along with!!

Saturday, July 1, 2017

Yesterday was a great day!

Yesterday, at the request of our Grand-Daughter In-Law, we went to the USS Alabama Memorial.  My Wife, Son, and Allie went to tour this great Battleship.  She wanted to get some idea of what I did for 40 years and the Alabama is a wonderful teaching tool.  I have not been on the Alabama for a couple of years and I was very excited to be "Home" on a Navy ship again.  Once aboard, I am young again!  My memories of being a Navy Gunner's Mate, a Master Chief, a Leader, a MAN, come alive.  I don't hurt!  I can run around the ship, bound up ladders, duck through hatches, and know exactly where I am on the ship, no matter what!!  People were following us and listening to my explanations of the systems on the ship.  I spent some time with young and older people, explaining al l the capabilities of the ship and her systems.  I was home!   I was young and alive again!!

Everyone else got worn out, but, at least in my mind, I could have gone on for hours more.  This may have been my last trip to the Alabama.  It was a good one.

Thursday, June 29, 2017

Fear of Death!

As you know, I was a Master Chief Gunner's Mate in the United States Navy.  After that I was a Navy Civil Servant, first as a Tech Rep for Navy Gun Mounts and Turrets and later in management of technical assists for Search Radars and other electrons sensors.  I did many dangerous, exciting things that most men can only dream of.  Some things I did are features in movies and video games.  So what you say?   Well, in the beginning of my career, when I was a young Gunner's Mate, gun mounts frightened me!  Here I was in a large Navy Gun that fired 40 rounds a minute of 5" ammo, each round weighting 75 pounds, propelled by a powder tank weighing 44 pounds.  Again, 40 rounds per minute!!!  When things went bad, they went bad fast!!  I saw live, explosive projectiles have their nose fuze ripped off!  Propelling charges crushed and spilled all over the gun pocket.  Guns fail to fire with the gun barrel hot though to cook off the explosive charge!!

Then, a very good friend of mine was killed, during combat operations in Vietnam, in a MK 42 Gun Mount!  I had to make a decision then to continue my Navy career, without fear, or get out!  I stayed and I was never frightened of death on a Navy ship again.   Death on a Navy ship, would come swiftly, explosively, and quickly.  I knew that and that type of death does not cause eke fear of distress.

But, what I am facing now, is something I have not come to terms with.  When Red Mills was killed, everything became clear to me.  But, now, slowly dieting everyday, nothing is clear to me!!  Instead, like I was when I was a young Gunner's Mate on my first ship, I am frightened, unsure of myself, unsure elf the unknown.  My body is slowly dying and I know that.  My brain is deteriorating, loosing control of my bodily functions and emotional responses.    And it is the slow steady, unrelenting approach of death that is more frightening than the sudden death caused by combat or training.   I have no control of anything.  What I do will not change anything.   am being overwhelmed by Lewy Body Dementia and I hate it.  I hate it because I am afraid.  The unknown is always unnerving.

I believe this is an emotion I have not expressed before on this blog.  And, maybe never out loud either.  It does not help me to express these fears.  But it may explain my recent issues.

Nights are still very difficult

Since I started the Effexor withdrawal, nights have been the most difficult time for me.  I have had some nights when I felt pretty good.  The electric zapping in my in brain was all but gone.  The pressurized feeling in my head had subsided also.  But, the last couple of nights, these issues have returned along with extreme depression and anxiety.   From what I have read, this is normal for those of us who choose to stop Effexor.  Some of what I have read, written by doctors and hospitals that know, tell me I may not succeed in this effort.  I would be devastated by that failure, even though it would not be totally my fault.  Effexor is a dangerous, powerful drug, that is extremely addictive.  It rewires the brain in ways science still does not understand!  Yet, they still prescribe it!  

Last night I felt so bad that I was seriously considering going back on Effexor or another anti-depressant drug, to help me cope.   But, right now, I still have some fight left.

One of the side effects that made me want to get off Effexor was the lack of emotions.  Getting off of Effexor has given me back my emotions.   But, since I did not have any emotions for such a long time, how long I cannot remember, dealing with emotions anew, is a challenge.  Yesterday, a staff member of ACTS, made a comment that plucked a nerve in me.  That individual made a comment that "I should not be walking with a cane.  I looked too health to need a cane!"  Well, that fired me up and I flame sprayed that individual.  I asked that person where they got their medical degree at?  I asked them if they were licensed in Florida to practice neurology?   Yes, I was angry.  Two neurologists and a physical therapist recommended I use a cane.  Seems like a no brainer!!  But, that individual thought they knew better.  I bet that person never talks to me again.

The moral of this story is two fold.  First of all;  I am emotionally raw.  My experience with LBD and my view that I do not have long to live, has stripped me of social skills.  The second part of the story is, individuals that work with senior citizens should learn to keep their opinions in their pocket!!

Again, nights suck!!  My days have not been all that good either.  And maybe, where  I am in my LBD journey will make stopping Effexor or a drug like Effexor, is impossible!    Only time will tell.  And when I know, you will too.

Tuesday, June 27, 2017

Future doubts

When I was younger, and I went to bed, I  knew I was going to wake up in the morning!  I had plans, things I wanted and needed to do!  And don't tell me, you never felt that way because all of us did!  Now, when I go to bed, I have no assurance I will wake up in this world.  Truthfully, many times I hope I will NOT wake up in this world!  I now have no plans and nothing that I need to do.  Instead, all I can see is things and decisions that I messed up!!  Decisions I made wrong, things I wasted money  and time on, and people I hurt.  I see my sins and failures, not my accomplishments or successes!  As a matter of fact, based on the perspective I have now, I can't see anything I did of value.

Yes, hind sight IS 20/20!  It is always easier to judge what you did after it was done.  But, looking back at my life, I am not satisfied with my accomplishments.  I find no value in what I did in my life.  Why, because everything I stood for is being denigrated and trashed by the people I spent 40 years defending.  The people that I considered to be the slackers, the takers, the crooks, and the immoral ones are now touted as the "Greatest, Moral, Brave" ones!  Why did I spend countless years away from my family, doing what the leaders of America said I had to do, to be pissed on now!  Based on the conversations I have with the "Landed Gentry" I live around, I am worthless, never had any worth, and should not be allowed to exist, in America as they, the Landed Gentry, have engineered it to be.

I am also very concerned about the financial decisions I made concerning my Wife's future.  I hope we made the financially responsible decisions that ensure my Wife's financial security after I die.  Yes, ACTS has a program to meet the needs of residents that run out of money, if that was not their fault.  But, I still worry.  And that worry consumes me and robs me of any satisfaction in life.

Life is not as I thought it would be at this age.  I guess I was wrong about that too.




Monday, June 26, 2017

Impact of Effexor withdrawal

Well, it has been 7 or 8 weeks since I started the draw down from Effexor.  The side effects of doing away with Effexor have subsided somewhat.  The "Electric-zapping on my brain has diminished as well as the pressurized feeling.  I am more emotional that I was when I was on Effexor.  That is good, since I hated being a Zombie.   I do cry at the drop of a hat and for no apparent reason.  Not a big "JAG" of crying, but tears and emotional release just the same.  I now cry every time I think of the death of Marcel or Charrie!!  I miss both of them.  And, while on Effexor I was completely impotent, I am regaining sexual function again.  Another good thing.   (Although, my Wife might tell you I am a bit of a pest right now.)  But I am happy.

I am more introverted and more introspective than I was on Effexor.  I am sleeping well and I am not taking naps!  Those two may be connected, but I do not feel the need for a nap right now.

One thing that has surfaced in spades;  My unhappiness with living in Florida.  I have no Surface Navy friends and no Church friends.  I am as alone, socially, as if I lived in solitary confinement.  Yes, there are people her to talk to.  People I have nothing in common with, who have no respect for my life's experiences, and see no value in me because I was an Enlisted man.  I might as well be invisible. I have stopped playing billiards because there is no fellowship there.  Socially, I would be much better in Virginia.  Long term care considerations make this the place I will stay.  But, I am not happy about that.  But, my happiness is not any one's concern.

Being a Effexor Zombie had it's benefits, but I like being connected to my emotions.  So, I will just have to find a way to deal with the negative issues.  Just the same, I am confident that I did the right thing getting rid of Effexor.  More later;

Thursday, June 22, 2017

Quality of life vs Length of Life

I have suffered for over seven weeks as I withdraw from Effexor.  That journey has been documented on this site and is well documented on the Internet with academic papers from MAYO Clinic.  The reason I decided to get off Effexor was some very negative side effects that made my life worse than life without the drug.  The truth is, we have no control over the length of our life.  God determined the length of our life before we were formed in our Mother's womb! (Psalm 139)  But, we can have an impact on the quality of our life.

How, diet, exercise, following our Doctor's advice, not smoking, not abusing alcohol or drugs, and paying attention to our bodies reaction to the drugs we take!  Then, openly communicating the issues we face with our families and Doctors.  Every drug we take, has side effects.  Some are more important than others, but al side effects impact our quality of life.

For instance, I had a total emotional detachment while on Effexor.  Not emotional response to anything at all.  No tears, nothing!  I was also became completely impotent.  Now, after almost eight weeks of withdrawal issues, both of these sided effects are gone.  I am happy!

I would rather live well, enjoying life as it is presented to me, than be a zombie.  Yes, I suffer from some depression and yes, the withdrawal has been tough.  But, I am better off now and I have some other drugs I may try to delete from my treatment regimen also.  Of course, we will have to bounce those decisions off of my medical team.

Also, today was my MRI to determine if the brain damage from dementia has increased.  The Neurologist also wanted to see if I  had a stroke.  I am anxiously awaiting the results.

But now, I am going to relax and rest.  More later.

Tuesday, June 20, 2017

Appology

Recently, I have been a hot mess of negative emotions and anger.  Yes, there are reasons related to the progression of my LBD journey and the issues of withdrawal from Effexor.  That being said, there is no reason for me being as negative and mean as I have been on this blog and in my everyday life.  For this, I am sorry!!

Truthfully, I have just forgotten that Jesus walks with me and I am able to deal with anything in my life as long as I lean on Jesus!  I am human, and I just lost track of where I should be.  SO, I sincerely apologize to those of you who read this blog, the wonderful folks here at Azalea Trace, my Family, Friends, Shipmates and the poor strangers that have seen such a negative person.

I will say in my weak defense that this is a difficult journey that has increased in difficulty recently.  But, that truly is no excuse.  I trust the King of Kings and the Lord of Lords!  There is no other in Heaven or on Earth that I need to overcome anything in my life.

Jesus got my by the neck tonight and shook me!!    I am back on track, thanks to Jesus now, so I again plead for your forgiveness and I thank God for getting me back on track.  No matter what happens, I am Heaven bound!!  Praise God!!

The impact of my LBD on my wife

I am not an impartial observer when it comes to my Wife.  I love her with all my heart and I detest anything that causes her stress, emotional distress, or depression.   We have gone through numerous Navy Deployments, training times, yard periods out of home port, tech assist trips, and other times of forced separation over our almost 45 years of marriage.  She has had to deal with a number of surgeries including my colon surgery.  But, I have seen my LBD journey cause her more worry, depression, and distress than any other issue we have faced together.  Any other challenge we had to face, has an end date!  Each challenge always had a "Get Well" ending.  Even the removal of half of my colon because of a tumor had a prognosis of good health.  But, LBD only has a future of "Bad to Worse"!   And, we are now getting into the "Worse" stages of this disease.

I can see the stress in her face, in how she reacts to life, and how she tried to keep herself busy.  I know her coping skills and trust me, she is using everyone she has, all the time!   There is no help.  No support group and no one she chooses to confide in.  Instead, my Wife stoically suffers today and our future, on her own.   It is just he way.

Me, I am oblivious to the future.  LBD is taking away my ability to see any thing in the future.   Tomorrow is too far away for me to see or think of.   Tomorrow will just have to take care of itself.  I am too busy trying to deal with right now.

Just the same, the thing that pains me the most is how my LBD upsets the Lady I love.

Monday, June 19, 2017

Thanks for the advice. NO, I WILL NOT go back on Effexor

I have thought long and hard, or at least as long and hard as LBD will permit, about going back on Effexor.  Yes, I agree, stopping Effexor may have accelerated my LBD issues.   But that is a small price to pay for the misery Effexor caused me.   The side effects of Effexor are insidious.   But, after a long time on the drug, I realize I was an emotional zombie in every way!

No, I would rather live alone in a locked room than go back on Effexor.   And think about it;  I never heard anyone tell a Heroin addict to go back on Heroin!  And when I was a drunk, no one ever told me that I should not stop drinking.  Am I having issues.  Yes.  But some of these issues are being caused by self-centered, egotistical, morons that believe they are the only people with the ability to reason.

No thank you.  I will NEVER take an anti depressant again.   The rest of the world will just have to learn to deal with me.  Or, they can leave me alone.  

Sunday, June 18, 2017

Let me open up about something

I am totally unhappy living in Pensacola and at the CCRC I live in.   Yes, Azalea Trace is a wonderful, luxurious, high class facility.  Yes, I have family I love here in Pensacola.   But, I am not in an environment that meets my socialization needs.  Neither Pensacola or the CCRC I live in has people that I share anything in common with!  It is not their fault and I try not to think the are being jerks on purpose.  They are rich, college educated, silver spoon people that have never done anything close to what I have done.  They did not grow up poor.  They are not blue collar.   I clearly am!

My journey with LBD has caused me, in increasing amounts and occurrences, to talk, think, and even hallucinate about my Navy times.   My mind is comfortable with the 40 years of my Navy life.   Maybe even obsessed!  I have no one to discuss Navy times with.  No one that was a Ship owner, a Division Chief, who ever had a sea detail station, chipped paint, world 24 hours a day until they dropped to pass a material inspection, repair a gun mount, or shoot Naval Gun Fire Support to keep the Marines save in Beirut or other combat situations.  No one knows what a "Hot Gun, Foul Bore" is or how dangerous that is!!  Nobody cares that my friend GMG 1 Red Mills died in a gun mount explosion off the coast of Vietnam!  No one cares about me, what I did, or who I am.

But all of those thoughts, experienced, fantasies, hallucinations, and events are all that I think of!!  

The problem is, what do I do?  Where do I go?  Is this the beginning of the end?   Do I push to move to Assisted or Memory Care now?  And WHY is any of this on my mind or even my problem?  Shouldn't these issues be someone else's responsibility?   If so, who do I turn too?

Look, I do not want to sound too dramatic, or even crazy, but I need help and I do not see any help on the horizon.  It seems irresponsible to leave me to make my own decisions when I think I am still in the Navy more times than not!    But the truth is, I do not live or operate in the present.  Ask anyone who real knows me.  Like Bo, John, or Jim, all men I play billiards with.  Or Rick, a retired Psychologist who's dog I walk sometimes.

Trust me, I am opening up more than ever before because, for the first time in a very long time, I am frightened!   This week, I intend to find a direction for the future.  If I can.

Two other points;  One, this week I threw in the towel on ever living in the Armed Forces Retirement Home in Gulfport Mississippi  (The Navy Home).  We are here at Azalea.  Linda cannot live in The Navy Home.  I MUST provide for her future.  So, that dream is dead.

Second;  I have not resigned myself to the reality that here is where I will remain until I die.  I will never live or have communion with Surface Navy Enlisted Men again.  Who I was has died.  But, who am I now.  Do I even exist anymore?  I believe I am an empty shell of my former self, with a video of my previous self playing 24/7/365 for anyone to see, if they were interested.  Which they are not.

LBD has taken over me.  Replace me with someone I do not know.  The old me lives in thoughts and sea stories, told to an empty room.

Last though for this post.  I do not even know who I CAN turn too.   I feel alone, lost, and disconnected from life.  Yes, I know my wife, son, grandsons, Allie, my middle Grandson's wife, my Best Friend Jerry and his wife, all care about me.   But, they do not see what I am going through.  They see what the wish I was or what I once was.  Maybe I hide my issues well.  I hate to disappoint them.  They love me and I love them.  But, I need help with the direction of my future.

There, over the last couple of hours,and through at least three editions,  I have told you in detail where I am.  Honestly, openly, and truthfully.   It hurts me to be open like this.  I have tears in my eyes as I am admitting my weakness, my fear, my inability to run my life, my frailty.   I am ashamed of the power LBD has over me.  But, it it what it is.  Lewy Body Dementia.

And "I still have miles to go before I sleep."