Tuesday, December 27, 2011

Happy New Year!

In a few days it will be 2012!  Happy New Year!  I look at the changing of the calender with interest and maybe just a little pensiveness.  I just read a new study that presents the idea that Lewy Body Dementia patients have a life expectancy shorter that like aged Alzheimer's patients.  I found that interest and a little unnerving.  Yes, there are individuals with LBD that have survived 20 or more years.  Yet, the study found that the average life expectancy was eight years!  Now, don't get all weak knee on me.  It is a study, and that is an average.  But, it still causes me to pause since I am at the 4 year mark and I am seeing an increase in symptoms and a speeding up of their development.   For instance, I have written about the increase in muscle cramping and pain, especially in major muscle groups.  Today, while driving on Interstate 10, I had a muscle spasm that caused me to speed up and slow down, maybe 3 miles per hour, just for an instant.  No big problem yet, a big problem.  I don't tailgate, so it would not effect me there, unless the spasm lasted longer.  I drive now, but I wonder how much longer.

Another issue is perspiration.  I break out in major sweat just doing minimal labor.  Like removing the sheets from the bed.   I know from reading that the automatic functions of my body are impacted by the LBD.  But, it is still increasing and therefore an issue to look at.

I am more emotionally impacted in the evening, and this has increased somewhat.  I need my quiet time.  But, I also need to get out and about, even if I don't think I do.  For instance, I had no thought of going anywhere today.  But, my wife knew I needed a day out.  Again, I did not know that.  But, I agreed and we left the house at 9 AM!  We were out until 4:30 PM, a long day for me.  I enjoyed it and she knew it.  My wife always knows what is good for me.

Back to the New Year.  I am not afraid of the future.  I am interested in how it will unfold and I am concerned over the suffering my family will go through as I deteriorate.  This is inevitable, but still it causes worry.  So, as I look at new medical and scientific information and compare that to what I know I am experiencing, it causes me to pause.  When we are young, we want the days to pass quickly as we wait for those milestones in life.  Christmas, our driver's license, graduation,  even retirement.  Now, as I enter the home stretch of life, I am not so anxious for that quick passage of time.  Yet, I also know what the future holds.  The question is when, not how.    

Remember, I write this blog to describe what I am experiencing as a way of release for me and a resource for those sufferers of LBD and their care takers.  It truly does help me and I know it helps others because they have told me so.  Their communications with me is also a great comfort.  I am able to communicate these feelings, emotions, thoughts now.  In the future, I am sure my wife will take over the writing to continue this string to it's natural conclusion.  

Friday, December 23, 2011

Merry Christmas!

Merry Christmas to everyone!    This is a season that I have always had problems with.  Even before LBD, I suffered from depression and withdrawal during Christmas.   I did not like the decorations and made Christmas drudgery for my wife.   This year is different!  I have enjoyed the season.  I wanted a Christmas tree.  WE bought a new tree and I put it up as soon as we got it home.  Then, I helped decorate it.  I can truly say, I am fully enjoying this Christmas!!  No depression, No withdrawal.  This is good.   I do not know what brought the drastic change, but I am glad it happened.  So is my wife.

While I know that any good time is followed by a severe degradation of my condition, I am really enjoying this respite.  I will take the bad, later.

I have seen some new articles about Lewy Body Dementia on the Web.  It seems there has been more recent research on our disease that centers on the prognosis.  While some will take this news badly, I am glad to see more attention being paid to LBD.  I pushed my Neurologist for an accurate diagnosis so that my wife and I could concentrate on research and medicines specifically designed for my disease.  I never liked the "Shotgun method" of addressing anything!  Check out what is available on line.

Again, enjoy this season.  It is a season of hope and love.  That is all we really have.  Merry Christmas.

Tuesday, December 20, 2011

Tired, worn out, weak.

My son and I spent the day touring the USS Alabama.  It was wonderful for me to be back on a combat ship. As a tech rep at NAVSEACENLANT I worked 16" Guns on the Iowa class Battleships.  The ones on Alabama are 16"/45 but still awesome.  It was great, I was home.

There is always a "but" in today's stories though.  That would be that for the first time, I had difficulty getting around the ship.  Normally, before LBD, I could go up and down ladders, in and out of hatches, without ANY effort.  Today, after an hour I was tired,  We broke for lunch and in the afternoon, I was stumbling, having trouble lifting my legs over the "Knee Knockers" and in general having trouble moving about.  Tonight, even after a soak in my son's hot tub, my legs are stiff, tight, and sore.   I know, what am I complaining about, I got to go see the USS Alabama.   True, and it was wonderful.  But it reminded me of what is happening to me and that always pulls me up short!

Again, this is a report, not a complaint.  Just two months ago, when my wife and I toured the same ship, I was able to get around without pain or difficulty.  Today, that was not the case and I believe that is a progression of my LBD.  I know, soon, I will need my cane all the time and a walker some of the time.  I expect that.  For now, I will remain stubborn and hard headed until I fall and break something!  That's my way of fighting back and not giving in to LBD.

Thursday, December 15, 2011

Where do I go from here?

This posting will upset those close to me and I am not writing it to evoke that emotion.  However, I need to record what I am feeling, my reactions, and my emotions.  I must be totally honest for my own well being.

The move to Florida has had it's benefits and issues.  I did not realize how much I liked having the Grandsons, my son and daughter-in-law so close.  We have had a number of family meals, outings and talks, that would not have happened if we lived in Virginia.  We have more planned.  Another positive is, this year, I am enjoying Christmas!  I wanted a big Christmas tree.  I put it up without prompting and even decorated it.  That is different for me.  I am getting more acclimated to the area and even drove back from the commissary today, without the GPS!  I did not get lost once.  So, all these things are positives.

However, my mental acuity, my desire to stay home,  my moodiness, depression and difficulty with nights has become more of an issue.  I continually have issues with noises at night and I have problems getting to sleep at night.  I do not feel, in my mind, that Florida is my home, even though I like this house.  My emotions tell me this is a nice place to visit, now let's go home.  But, my mind tells me, my stuff is here, so this must be home.  I am in conflict.   I spend more time thinking about the past, my parents, my Navy career, old shipmates, school friends.  I look up old friends through computer searches, but I don't contact them because I fear rejection.  I am secure in my home, and frightened otherwise.  It all wears on me.

Another frustration of LBD is the continual "on and off" of this disease.  I have had times that I felt there was nothing wrong with me, and other times, I feel so out of it, that I don't know how to take my next step.  I got a haircut today, and for a while, I was really not in the chair.  I could not figure out how my hair got so long.  After the haircut, I sat on the bench waiting for my wife.  I could have been anywhere.  Florida, Virginia, Ohio, California, anywhere.  Then my wife showed up and I was back "on".  That is very frustrating to me.  I had another thing to write, but it is now, not in my mind.  Another frustration.

So, "Where do I go from here?" is really the question.  My logical mind says; "This is home now."  My LBD mind says;  "Where do I go from here?"

Friday, December 9, 2011

Evening anger and stress

I have been blogging quite a bit lately.  There are two reasons;  One, I have noticed more issues.  Two. I need to release the stress through my writing.  Writing these blogs feels like I am talking to friends, who care.  It is good for me. Tonight I am writing about my evenings.  When the sun goes down, I am really noticing an increase in the effects of noise and stress.   I have written before about how noise causes me to react negatively. I get angry, yell, cringe, recoil, to a loud noise, the increase in volume of the television commercials, or the telephone ringing.  I also notice that I am more verbally aggressive to things I view on the television.  I say things I would not normally say and react in a manner that upsets my wife.  It is unintentional but, disturbing just the same.

Another issue is my reaction to stressful situations.  During the day, Things bother me less in the day than at night.   For instance, television shows.  A drama during the day, I view as entertainment.  But at night, the same genre of drama upsets me so much that I need to turn the show off.

Another issue happens when there is an issue in our household.  I try to remain calm, not loose my temper, and not react to others emotions.  But that internal fight causes me emotional issues, internal anger, and depression.   I try not to show it, but I know it shows.  Just the same, loosing my temper over something, big or small, is not productive and certainly not good for me and those around me.  I am truly not sure how to deal with this issue.  I will bring it up with the new Neurologist in January.  That's not too far away.

PS;  One other issue, every evening my legs now hurt, ache, feel tight, like the muscles are fighting with each other.  During the day, if we walk a moderate amount, my legs hurt and begin to get weak.  The fact is, I just cannot walk as far as before.  Walking is an exercise my wife and I both enjoy.  But I cannot do our Batann Marches anymore.

I also notice other large muscle groups being painful in the evening, even without excessive use during the day.  But it is my legs that worry me.  The Family Practice Physician I visited yesterday did a leg lift test and then asked me if I noticed weakness in my legs.  I told him I had and he acted like he already knew what my answer would be.  Again, something to discuss with the new Neurologist in January.

Funny things

Yesterday's doctor's appointment brings a funny story to mind.  A while ago, I had an appointment with my previous neurologist's Psychologist.  She and I had a good discussion about how I was dealing with my disease and at the end she asked me; "Are your suicidal?"  I answered hew with a simple, "no".  Then she asked me; "Are you homicidal?"  My answer was a little longer,  I told he; "No, I like sex with women!"  It took her a minute to digest my comment, and then she burst into laughter.  

I had an Executive Officer on a ship that I was stationed on that always said; "If you aren't having fun, your doing something wrong.  Life is supposed to be fun!"  I agree with him and I try to find humor in anything I can.  That moment was funny, at least to me.

Thursday, December 8, 2011

Found a new Doctor!

One of my fears with the move to Florida was finding a doctor I could relate too.  My Family Doctor in Virginia Beach was a wonderful, caring, personal, man with professionalism and compassion that is rarely seen.  I was his patient for 15 years and I did not want to leave his care or his friendship.  Today, I went to visit a Family Practice doctor who was recommended by my Son's Brother in Law, who is also a Doctor.  This fellow is very caring and seems genuinely interested in my care.  He listened to my ramblings and I believe he was interested.  However, I learned something today filling out all the forms, answering all his questions abbot my condition, my past injuries, my exposure to the hydraulic fluid in the Navy, and my surgeries;  I learned that I am SICK!  There's a lot going on with me and none of it is good.  I am a wreck!  I was rode hard and put up wet.  I abused my body and the Navy did the same, for over 40 years and now I am paying the price.

I suppose this is nothing new to you who read my blog, but it just overwhelmed me to openly discuss everything at one.  In one 45 minute appointment, we discussed ten years of medical procedures, operations, medicines, tests, and symptoms.  Again, I say, WOW, I am sick!!

I also had difficulty conveying all of my issues.  I would formulate an answer to his question and then loose half of the answer.  Then, two questions past the answer I lost would pop up in my memory and I would tell him about that issue.  He must really be confused!  I know I was.  But, he calmly listened and asked leading questions.  I almost felt like I was talking to a speed dating service!   Maybe not.  But, it was rapid fire questions and answers, separated by gaps in memory on my part.  But, he is a keeper.  Now, we will see how the neurologist is in January.

Wednesday, December 7, 2011

Law and Order on dementia

Tonight, my wife and I watched a new episode of the television show, "Law and Order, Special Victims Unit".  It addressed the effects of Dementia on one's ability to understand the difference between right and wrong.  I will tell you that the writers went around the "Prostitution" corner to portray this issue and I wish they would have chose another venue to portray the terrible effects of Dementia.  But, at least they DID show the terrible confusion that someone with Dementia suffers.

The person effected with Dementia was a retired professional football player suffering from Dementia from the terrible beating that football players take starting in "Pop Warner" youth football, high school, college, and maybe, if they make it, professional football.  However, many military men have had numerous, repetitive concussions and suffered them long before they came under the scrutiny they are now.

In any case, the person suffering from Dementia commits suicide in the end because he finally faced his disease and he could not live with the reality of that truth.  One of the facts that this brought out was the need, the absolute necessity to diagnose Dementia early.  Why, because when we are still in "The Now" we, the effected persons, can deal with the disease logically.  We can talk about Dementia, research it, digest it.  The person in "Law and Order" was pretty far down the Dementia path when he finally faced his disease.

Do we, those who suffer from Dementia think about suicide?  I cannot answer for everyone, but I have.  But, I choose NOT to take my own life because I did not give myself life, GOD did.  Therefore, I cannot, I am not authorized, to take my life. Truthfully, it is not my life, but Jesus life, since HE lives within me.  So, suicide is out of the question.  Yet, I will welcome my "calling home" when GOD chooses to call me.  Until then, I will continue to share my experiences and my journey until I am unable to do so.  Thanks for being there for me.  It helps to know I am reaching so many people.

Another issue came to the fore front today as I read the blog of a fellow sufferer's wife and caretaker.   He has lost his ability to remember the people in his life and can be difficult to take care of.  She has chose to sleep in a separate bedroom to maintain her sanity.  She monitors him by camera and monitor, so he is never really alone.  In her blog, she told of the stress, pain, and dismay of making this decision.  Those of us who suffer from LBD can be difficult to live with and even worse to sleep with.  Bad dreams and the fact that unlike people not suffering from LBD, we CAN act out our dreams!  So, we can and DO hit our spouses, not in anger, but in acting out our dreams.  SO, I can see the day coming when my wife will have to do the same thing.  While I try to be a good patient, I fail and I am not as far down the road as this ladies husband is.  She has endured much more than she should have and has bore that burden in love.  Separate bedrooms will only make he a better care giver and give her the rest she needs.

The moral of this story is, caregivers need care also.  If you are related to a caregiver, step in and give them a day off, and afternoon out, or a special dinner.  They will appreciate it.

Sunday, December 4, 2011

It's not what you say. It's how I perceive it!

My last visit to the neurologist in Virginia was to  a new neurologist at the recommendation of my neurologist.  The new doctor was young, newly educated, and more up to date on LBD.  She was wonderful, not bashful, and not affraid to say things that shocked me.  St told me that I had not yet come to terms with my disease.  I openly disagreed with her and she said I was full of, you know what!  Now I know she was right.  Her forcefulness made me think, and I have been since that day.  I have known in my mind, that I was sick for a while, but I never really accepted the fact that I was sick and I was not going to get better.  I have been doing OK, some ups and more downs, yet I always fooled myself that I would be OK in the end.  Now, I am beginning to digest the facts that this is as good as I will ever be and I am going to get progressively worse until I die.  Now that is the reality of my condition.  Again, I have addressed that fact in theory, but not as a actuality in my life.  I have written that I have the ability to look at my disease as if I was out of my body, looking at what was happening to me in a subjective manner.  Now, I am actually experiencing the problems live!  She really shocked me into looking at the realit of my condition.

That brings me to another related issue.  My emotions are raw and I am sensitive about anything directed at me.  When my wife asks me a question about something I have done, I automatically think I am being disciplined!  I react as the child who was caught!  Today, I addressed that with my wife and she understood my emotional position.  She is good about listening to me and trying to understand my needs.  So, much like how I reacted to the neurologist, I react in a defensive manner whenever I feel challenged, disciplined, or corrected, by anyone.  That's is just the fact of where I am.   And, since I now am getting better at accepting the reality of my condition, I can tell you, it will not get better.

So, like the title, it's not what you say, it's how I perceive what you say.  If I get defensive, you will have to look at what you said through my eyes.  That's called compassion.  And that is what I need.

Friday, December 2, 2011

Lost things that are important to me.

Today, my wife and I had a good day.  We had some business to conduct at the County Tax Assessor's Office and that went very well.  We walked on the Navarre pier.  It was beautiful, the weather was warm, the Gulf of Mexico was inviting, and we had a great time.  After that, we went to the Air Force base to check out their rifle and pistol club.  They have a good facility that will meet most of my needs and desires.  The thing that was missing was Navy personnel!  I was surrounded with Air Force personnel.  Not that they are bad or sub-standard, but they are not the people that I have been with for 40 years.  Additionally, Pensacola is an aviation base.  So the sailors and officers there are "Brown Shoe" sailors not the "Black Shoes" that I am used to.  Neither the Air Force personnel or the Navy Aviators know about or care about Navy combat ships, gun mounts, or Gunner's Mates!  And I miss that camaraderie.  That loss negative effects me. Do I think it will pass, probably.  But for now, I have no one to talk too and no one to relate too.

So, we will see.  Maybe I will take an add out in the local paper for a Navy "Black Shoe" to talk to.  It can't hurt!

Tuesday, November 29, 2011

Little things cause me BIG issues!

It is interesting the effect small disappointments in life have on me.  For instance tonight, two of my favorite television shows were not on.  They should be new, but they were preempted for a Christmas special that has been on every year for 40 years!!  That really aggravated me!!   Now, I know that is a small issue, but I am such a "routine" driven person now that I get angry over the slightest change in my routine.  Another issue is that I cannot figure out the new cable system that we have here in Florida.  Now, I know that learning new things is almost impossible because of the "Executive Function" of my brain is broken by my LBD.  Just the same, knowing and being effected by it are two different things.  Many times I know it is Lewy causing me my issues, but I still get extremely angry.

Another issue is web sites changing their look.  For instance, the web tool I use to produce this blog.  Some "Geek" somewhere, thinks changing the look of things is good.  Why is changing what works, good?   CHange drives me up the wall!!   Don't change things, leave them alone!!

What do I do, nothing.  I try to hide my anger, but that only causes more issues.  So, I will just continue to cling to things as they are.  At least until I no longer remember how things were.

Friday, November 25, 2011


Have you seen the mini series advertised on the Lewy Body Dementia Association web site titled "Boss"?  It is pure rubbish!  I watched an episode today, because I saw it advertised on the LBD site.  They stated that it was about a man with LBD and the effects of the disease on him and his family.  NOTHING could be farther from the truth.  It is a series filled with Foul, foul, language, nudity, illicit sex, political power brokering, and intrigue.  But not a SINGLE word about LBD or it's effects on the sufferer or the care taker.
If Hollywood wants to make a movie about our disease, please tell about the despair of loosing your memory, your motor skills, your independence.  Please tell about the wear and tear on the spousal care giver.  Please show the limited institutional care choices and the cost of these services.  Don't pervert our disease with Hollywood smut!

Shame on you Lewy Body Dementia Association for touting this series as being representative of us sufferers!  Shame!!

Tuesday, November 22, 2011

Can't deal with the things of life.

I have found and increasing inability to deal with all but the mundane things of life.  A mention of the budget, what we spend, savings, planned purchases, anything money, make me want to run into the closet and hide!   This problem has been growing and I knew it was there, but the recent rapid rise is disturbing to me.  Now, I will be honest, I was never into the day to day budgetary management of our family.  My wife has handled that job in an exemplary manner over our almost 39 years of marriage.  But, it never caused me pain when we discussed our budget, and I always managed the long term finances.  But now, I am overwhelmed and repulsed by this topic to the point of wanting to run away.  It would be interesting if it were not so unnerving for me.  I am quickly loosing contact with daily life.  There is little I want to do, and that is not totally new, just more so.  I only want sleep, eat, and watch a few television shows, mostly reruns, that I like.  I see no need to shower daily, shave, or even brush my teeth.  This also has been a progressive degradation.

But, it is what it is.  My wife makes a great effort to get me out of the house and takes me places of interest.  Today, we walked the Navarre Pier.  It was a warm day and a pleasant time.  But, she wanted to look at the fish, the surfers, and move around the pier, I wanted to sit on a bench.

I realize this is the natural progression of my disease, but for the first time, I am actually angry at my condition.  Again, a new emotion.  We will see what happens next.

Saturday, November 19, 2011


As most of you know, we have moved to Florida and we are in the throws of settling into a new home.  As you know, this required shelf lining, hanging pictures, towel bars, coat hooks, even putting together some of that "Easy to Assemble", "Even a Five Year Old can do it" furniture.  All of that has gone surprisingly well.  Yes, because my brain has problems controlling my autonomic functions, I SWEAT at drop of a hat.  As a matter of fact, putting on my hat causes me to perspire profusely.  I also get tired very easily.  So, what used to take me a day to do, takes a week.  However, my wife has been very understanding and very supportive of me.  She has kept my pace to one I can handle, and I really appreciate that.

However, last evening, I ran into a problem that cascaded to the point of frustration and tears.  We had purchased a shelving unit for the office, and after the "easy" assembly, I was placing the computer router, my APPLE remote access computer transmitter, into the shelves.  To o this, I had to disconnect both units to route the wires through the back of the shelving unit.  This is where I got in trouble.  It would not have been hard, a few years ago, but since I have NO short term memory, I could not get the APPLE unit wired correctly. I was frustrated because there were two wires that have oblivious places and the third wire had four places to go.  Try as I might, I could not remember where that wire went and I tried every combination.  Finally, after accidentally creating my own WEB unit, I gave up and called my son who lives very close.  He graciously came over, with his wife, and fixed my mistake.  For him, it was a five minute job.  For me, it was a mountain too high.  I am very thankful that we live close.  But, if I had not moved, the computer would have been fine!  Probably not. I had my eye on these shelves for a while.

P.S.  Writing this blog post, I am sweating profusely, to the point of having to wipe my brow, and it is 71 in the house!  This is a strange disease.

Sunday, November 13, 2011

Learning new things.

I have always been a person who learns from watching.  Yes, I HAD almost total recall of all that I read, heard, and saw.  It served me very well through out my technical career.  Now, my memory is diminishing at an alarming rate.  A least, an alarming rate to me.  But I still try to observe the reaction, people close to me have over issues I have or cause.  For instance, some people close to me react in a very interesting way to my postings.  I write, what I believe, are insightful, honest, reflections of my emotions and symptoms as I progress through LBD.  I do this as therapy for me and to record this journey for who ever wanted to know what I went through.   Some folks choose to get upset and react in ways that are emotional instead of just taking what I say as a statement of fact.  I know they worry and love me.  But, I still need to have the latitude to be honest and open.

Another, issue is that some people get angry with me when I have done my honest best to remember things and accomplish tasks, and yet have not measured up to their expected level for me.  Some folks close to me continue to hold me to the standard I once met easily, but now can't ever hope to reach again.  I can understand their frustration.  Heck, I am frustrated!  But, they must understand that I am not being the way I am on purpose!  I cannot be held accountable for the way my brain works.  It is a disease, a chemical deficiency and brain function failure that causes me to be the way I am.

I began this post some days or weeks ago and set it in the "Draft" section until tonight.  Why, because I did not want to hurt any one's feelings   Today, I helped my wife make dinner for our friends and family.  One of my jobs was to bake the ham.  I followed the instructions on the ham wrapper to the letter.  About 45 minutes after I placed the ham in the Nesco roaster, I noticed a faint haze of smoke coming from the roaster.  I thought it was fat burning off, but I went to check.  That is when I found out the ham had two wrappers on it!  The outer wrapper which I carefully removed, as instructed on the wrapper.  They did not tell me there was another thin, wrapper around the ham, and I just did not notice.  I would have before LBD, but evidently not now.  It came off easily after being heated to 325 degrees!  No harm, the ham was very good and no one got sick.  But, this is another example of me not being capable of meeting expectations.  This is also the first I have said anything about my mistake.  Why, pride, sensitivity, shame, self-anger, I guess.  I hate not being able to be depended on.  That may be the one thing that hurts the most.

Slipped a cog, and it shows.

Today, we had a special family dinner at our new home.  It was wonderful to have a group of people sit around the dinner table and just have fun!  Conversations were flowing richly and I was engaged, about half of the time.  I felt myself check out a number of times.  Once, my Daughter in Law noticed that I was overwhelmed and she asked if I was OK.  my wife also noticed.  The only time I really joined the conversation was when the topic turned to Navy.  I live in the past for the most part, and therefore always have a few sea stories ready for the unsuspecting guest.  Today was no different.  I even managed to remember some things my Son had never heard.

Just the same, I notice I am overwhelmed by large groups, strange locations, and of course, the dark, more than ever.   My Wife and I also noticed this Friday night when we were out, after dark, for a birthday dinner.  Large, friendly group, in a place I had not been.  There was a lot happening, many conversations, and people moving all around.   This is something to be aware of, but not surprised by.

Another issue is, I need more down time.  That is, time where nothing is being asked of me or required of me.  My Wife continually tries to keep me engaged.  This is good, on a limited basis.  But, I need time to recharge my damaged mental battery.  That is hard for my Wife and others who love me.  They think keeping me up on my governor is good for me.  Not so.

We will be looking for a neurologist this week.  I need the safety of knowing I have a doctor on my team.  That is another big issue with the move to Florida.  Rebuilding my support team.

All in all, I think I am doing as well as can be expected, considering that someone put my entire life in a blender and put the selector switch on puree!

Sunday, November 6, 2011

Almost settled in.

Well, the boxes are unpacked and gone, the furniture is in it's place, the refrigerator and washer/dryer are delivered,  (although with great difficulty from Best Buy) and we have shades on the windows. Life is returning to normal or something that resembles normalcy.  We even made it to Church today!  Also, we had our family over for dinner on Saturday and that was great!  So, many of the things I wanted from this move are coming to pass.

However, my wife and I have both noticed a degradation in my condition.  I am more detached from the world around me and I notice that I look at the world around me from  distance.  It feels like I just woke up from a long sleep and am still groggy.  I am also noticing some problems with the autonomic functions of my body.  I have trouble maintaining my body temperature at a normal temperature.  I am either too hot or too cold.  My neurologist noticed that my blood pressure was elevated, but I have also had recent times when my blood pressure was normal.  Both of these are normal issues for people with LBD.  However, they are new to me.   I can actually feel when my blood pressure is elevated.

As things get more routine, I hope, but do not believe, that I will return to where I was two months ago.  That's not bad, it is just the way it is.  Knowing about this disease makes it easier to deal with it.  It also makes me expectant of future changes.  It is like waiting for the thunder after seeing the lightening.  You know what is coming, but you don't like waiting for it to come.  That may not make sense to most, but it is how my mind works.

Tuesday, November 1, 2011

Don't try this at home!

I almost feel like I should have a disclaimer stating; "Professional idiot, don't try this at home!"  Making a cross country move, while suffering with mid-stage Lewy Body Dementia is not a good idea!  I may go as far as to say, learn from me, but don't try this yourself.

Yes, I am very happy to be with my Son, Daughter in law, and grandsons.  And Florida may be a nice place.  But moving away from my know surroundings, friends, doctors, church, and landmarks was not a good idea.  The stress of moving across the hall in the same building is tough enough, moving into everything new is frightening!  Nothing is as it seems or as it once was.  The stores that promise delivery don't keep their promises.  The companies that provide services, don't.  It is a constant fight to maintain.  My poor wife is overwhelmed with unpacking, arranging, organizing an entire home.  All this while she worries about my well being.

This move is like a television show where the hero jumps out of a car at 70 mph and gets up to fight three bad guys, and wins!  Watch the show, but don't ever try it yourself.  I think they call that living vicariously.

Just where am I?

During this move, some interesting things have manifested themselves.  The other night at my Son's house, the three dogs were out.  I noticed my Son's small dog trying to play with a black cat who was NOT interested in friendly play.  I am sure Wolfy thought the black cat was his playmate, Choco, who is an indoor cat.  It was not and Wolfy was about to get his but kicked!  Then, my dog, Marcel, a miniature poodle, came over to join the fun.  So, I came out to rescue the dogs from an embarrasing outcome.  I picked up Marcel, and called Wolfy to follow me into the screened in patio.  Along the way, I also herded my Son's English Bull Dog.  There I was, in the screened in porch, Wolfy and Lulu safely in, and I was frantically calling for Marcel.  He was no where to be found.  He did not reply to my calls and I was worried, even frantic!  Then, I realized, he was in my arms!!  I honestly did not know I had him.    I can only deduce from this event that my grip on situational reality may have taken a hit in the move.  It is only one event, but I have been obsessed with the location of the dog ever since.

Another issue is that my hallucinations have increased and I am now seeing people more often.  Again, we will see where that leads.  More later.

Friday, October 28, 2011

We are now Floridians.

We are a day away from getting our furniture, but we now own a home, again, and we have Florida Driver's Licenses and our car has a Florida tag on it.  So, we are officially Floridians. The home closing was a bit difficult, drawn out, and frustrating.  We were supposed to close at 3PM and did not sign the papers until 6:30 PM.  But, it is done.

This move has been harder than I thought on me.  Yes, I wrote about the expected issues before, but I am really having issues with energy levels and attention span.  I am good for about two hours and then I fade into a fog.  I cannot pay attention to any details, have problems staying on track with a conversation, and have problems formulating sentences.  I guess this was all to be expected, but I am still somewhat unnerved by it.   I hope these declines in my mental ability reverse after we get completely settled, but that may only be wishful thinking.

Our furniture gets delivered Sunday.  The driver called today and asked to make the delivery Sunday instead of Monday because he has an issue at home.  Who am I to say no.  Our refrigerator does not come until Wednesday, but that will have to do.

Every step in this process has been painful to me.  But I still think it will be a good move, after the dust settles.

Wednesday, October 26, 2011

The NEW mortgage rules!

One of the BIGGEST stressors for me and my wife is the new mortgage rules.  I did not provide this much information to get a Top Secret Clearance to work in Nuclear Weapons!!  They want every financial statement, every five minutes.  The loan officer just explained to me it is because of the issues with the "Sub Prime" mortgages.  He said we were fine, but we have to meet the requirements for no loads!  Today, we were required to prove we had the money in the bank to cover a "Certified Cashier's Check" that is already cut and sitting in my brief case!!  Now that is stupid!   But what is even worse, is that things like this drive me to the point where I can no longer function.  I really feel that we should have paid cash!

I have really lost my ability to objectively look at anything at this moment.  I believe I will go to sleep.  The moral of the story;  If you are a great credit risk, you will be treated like a no load.  Why work your entire life, following the rules of the society, if there is no benefit.  I could have been a "No Load" and be treated the same way,  This country is falling apart with this treat everyone the same stuff!!  I will sleep now.

More move experiences.

We got here Tuesday evening and have been busy since then. We are lucky that we can stay with our Son and his family.  Today, Wednesday, we traveled the area getting all the services set up for the new house.  Nothing is in the same location, but all the people were friendly and helpful.  Water, sewer, trash, insurance, check for closing, we have been everywhere.  One thing was reinforced, I have a limit of things and time that I can be mentally and physically able.  And that time limit is decreasing.  About three hours is it!  After that, I begin to fade and get grouchy!

Another problem that continues to plague me is my need to know where everything is.  Since all of our possessions are in a moving van, somewhere on the east coast, and not scheduled to arrive until Monday, I am in a constant worry about where my stuff is.  I don't even have my own coffee cup!!

Yet, all in all, this is going fairly well.  I am overwhelmed, but I seem to be able to deal with things fairly well.  I will keep you informed as things continue.

Monday, October 24, 2011

A fond farewell

I write from a hotel room in Augusta Georgia.  We are completing the first leg of our relocation cruise.  We will be in Gulf Breeze Florida tomorrow.  The movers from Bekins Movers did a wonderful job packing us out and moving us!  We were packed n Friday and they loaded the truck today.  We were on the road by 2PM.

Yesterday, my Church, Grace Community Church off Virginia Beach gave me a great send off.  I had the opportunity to preach my last sermon, at least for a while, and my brothers and sisters in Christ made Linda and I feel loved.  Our best friends, Jerry and Marcia were there as well as Nancy Allen from the Virginia Beach Senior Services.  It was the hardest part of our move to Florida.  I truly love all of these people.  They are very important to me and I will miss them, tremendously.  Yes, I know this move has many good points.  Finally being with my Son, Daughter in Law, and grandsons again, is a dream come true.  But these friends have been a life line for me.  I will miss them and I hope they come to visit us soon!

More driving tomorrow, busy Wednesday getting ready for the closing on our home, Thursday closing, Next Monday the furniture arrives!  We are going to be busy!  So I will rest for now.

Thanks Virginia Beach!!    

Friday, October 21, 2011

Move stuff.

Well, today is the day.  The movers come this morning to pack our belongings.  In other moves, my wife and I did this.  I remember her carefully wrapping and re-wrapping our china.  That was always the first thing she did.  But, this time we are trusting the "Professionals".  How am I doing?  As good as I can be expected to be doing.  I have a "Fight or Flight" feeling right now.  I am very apprehensive of what is going on and I have a need to talk to people.   I will be very glad when this is over.

I went to my neurologist's appointment a day or so ago.  My long time neurologist has a new member in the practice and she wanted me to see her.  I must say, she was very good.  She had extensive knowledge about LBD and she explained things about my disease that I had nerve been told.  She also "Confronted" me about facing the reality of my future.  She aggressively encouraged me to seek counseling to help me face the future and also my present state!  Again, she was very direct yet very concerned.  I liked her approach and I am sorry that I will not be able to continue with her.  She recommended I seek treatment from the University of Alabama.  Her statement was any neurologist can "Baby sit" me, but to get the proper testing and up to date information I needed the University setting at least once a year.  I am sure my wife will take that advice and act on it.

Another "close out" for the move comes Sunday.  I believe I have told you that I am an Ordained Pastor at my local Church.  Positionally, I am the junior Associate Pastor.  But it was an unbelievable honor to have the members of my Fellowship vote to Ordain me.  This Sunday is our last time worshipping with these wonderful people.  The Senior Pastor has given me the honor of speaking this Sunday.  I have preached a number of times in this Church, but this one will be difficult.  I have my sermon done, and I am ready.  But I do not think I am ready for the emotions I will experience.

In any case, the move progresses, with or without me.  I am trying to stay engaged.   But I must admit, I would be much more comfortable in my bed with the covers pulled up!

Monday, October 17, 2011

I am not as young as I used to be!!

OK, I admit it, LBD and age are really doing me in!  We are having professional movers do this move but, we are packing most of the art work and some things that are precious to us. Just doing that, really HALF of that today, has really worn me out!  Used to be, I could work all day, party all night, and repeat that sequence for a week!  I was a hard worker, strong, resilient, worked and played hurt.  Now, I just cannot keep up.  There was a comedian, from the early days of Red Foxx, her stage name was "Moms Mably".  She made it on the nightly talk shows.  She was mainly known for "Blue" humor.  But, one night on the Merv Griffin show, she said; " My get up and go, got up and left!!"  I now know what she meant!

My energy level is very low, no matter how much sleep I get or what I eat.  I realize this is a symptom of LBD, but I thought it would manifest itself later.  Guess what, later is now!!  No big deal, I just have to pace myself.  Pack a box, nap for an hour, pack another box, another hour's nap.  Sounds like a good theory to me.

Tomorrow, I have my last appointment with my neurologist's office.  That should be interesting.  I will let you know how that goes.  Now, it's nap time!

Sunday, October 16, 2011

The hardest parts of leaving!

If you read my post of a few days ago, I told you about my Doctor's view that my symptoms will get because of the move.  He did tell me he thought the move would be good for Linda and me, but he cautioned me to expect a worsening of my symptoms.  I can tell you that I am already seeing issues.  What causes this degradation?  Stress, change, the unknown, the loss of my known safe environment, and the general uprooting that a major move causes.  On my other blog; "The Master Chief's Lair" I wrote about my emotions over leaving my long time best friend and his wife and family.  Leaving my Church family is almost as tramatic form Linda and me.  Tonight, we had a communion service together.  Since this will be our last communion with our Church family, it was bitter sweet to ssay the least.  We have grown greatly in out faith and Bible knowledge under the teaching of ouf our senior Pastor.  He is a gifted teacher and an accomlished Bible scholar.  But there are others in our Church family that have equally help us to grow.  This fellowship is truly a family.  We are one, regardless of good times or bad.  We work together, pray together, bear each others problems, and love each other.  We all know that, no matter what, we can call on our Church family for real help! Not just a cursery: "I will pray for you", but real work.  I remember when I was putting a roof on our home.   missed Church on Sunday because I had so much to do and I hurt so much from the labor of re-roofing a house.  Instead of giving me a hard time for missing Church, the majority of the Church members came to my house after Church and helped me clean up by picking up the old shingles on the groung, raking the yard and sweeping the drive way to ensure there were no stray nails to hurt someone or flatten a tire.  I can give you ten other examples of this fellowship's love in action, but you get the idea!

I will miss this Christian family.  I am not sure if there is another one in the world like them.  I will miss them and there will always be a part of my heart missing because of this move.

You cannot live somewhere for 28 years and not feel the loss when you move away.  Yet, this move will be positive.  Having my son and family close will help Linda and me.  We have been away from them way too long.  I need this family connection now, more than ever.  So, broken heart and all, it's off to Florida we go.    

Tuesday, October 11, 2011

Issues to expect from the move to Florida.

I had an appointment with my Primary Care Physician yesterday.  He is a great Doctor and friend.  He was very aggressive in finding my disease and has followed up on every turn of this prognosis.  I told him of our planned move and he was shocked, to say the least!  He offered some insight into what I should expect as far as my LBD is concerned.  He told me to expect a down turn in my disease.  In other words, I should expect to get worse.  My memory will suffer, and I assume other mental issues will decline.  He did not say if that decline would be permanent but I believe he meant it would.  How much of a decline is yet to be seen.  He was also very adamant me not doing yard work.  That was one big reason we sold the last house.  I have lost so much muscle strength and mass that I get exhausted and over heated doing the simplest physical labor.  I could ride a lawn mower, that is no work, but I even sweat and get tired doing that at the church.  My son has assured me that he would take care of the yard work.  I am sure he will.

The preparations to the move seem to overwhelm me also.  Taken in small bites, I do well, but I notice, and my wife does too, that I quickly tire and loose my ability to cope with people, noise, and being away from home.  So, we are doing things in small doses and managing my time as well as we can.  Of course, you can't manage the people who you come in contact with.  Some are very good and some,  not so good!  We went to Best Buy yesterday to purchase a refrigerator, washer, and dryer for the new house.  The associate we worked with was very good!  He was knowledgeable, efficient, and caring.  He made fast work of our order and I was impressed.  

So, all in all, we are handling the move pretty well.  I am excited about the new home and the prospects of being with my son and his family.  I am concerned as to how this will effect me, but life effects me anyway.  So, we will see what we see.

Wednesday, October 5, 2011

The stress of moving.

I went into visit my friends where I worked before I retired.  I knew today, or more so, this week was probably the last time I would have the ability to visit my old office.  The next few weeks will be filled with the rush of moving preps and packing.  My wife is doing a stellar job of getting our financial affairs in order for the move.  I am taking care of the few items in the apartment that I have to take down, patch, or remove.  Actually, I don't have much to do.  That's good, because I don't think I can do much.  I am increasingly overwhelmed with this move.  Yes, I know it is good for us.  And, yes, I think it will be good for me once we are settled.  However, I am very concerned how this move, the uprooting of me from my routine, will effect the progression of my disease.  Do I think we should not move to Florida?  No, since I think it is good for the entire family.  But, everyone involved needs to know and understand the stress this brings on me.  I will have NO ROUTINE!  Nothing will be as it was!  My friends, doctors, stores, locations of everything in the home and out, will be unknown to me.  My best friends have been close to me for over 30 years!  Now they will be 900 miles away!  I am unnerved and this is the first time I have acknowledged this.

Some of my friends at work voiced their concern for my well being but even they agreed that this was a good move.  Again, I know we are moving for all the right, sensible, reasons.  And I cherish the idea of being close to my son and his family.  I know Linda and I will receive abundant love and support from them.  But, there is still the real issue of how this will effect me, for the short and long term.  I know Linda knows this and has considered it in the move planning.  I also know she will carry a tremendous amount of personal stress and worry over my well being.  This also concerns me.

Another fact to discuss is, as I write this, I am very connected and rational.  However, I have had increasing bouts of decreased rationality and connection to the present.  Even today, during my visit to work, I found myself drifting off into a disconnected state.  It seems the present that surrounds me fades away and I am left in a disconnected no where.  I have often described this as the feeling you get as you get increasingly drunk.  I was a quiet, solemn, drunk.  Very few fights, just a mellow, retraction, from the world around me.  That is exactly how I feel during these times.   I loose track of where I am, what time or even what day it is.  Familiar people become strangers to me.  This sensation or state of mind seems to be increasing in frequency and length.  Again, much like my hallucinations, it does not frighten me, I just find it interesting.    

So, as this move progresses, and I again must tell everyone, i support this move, regardless of the effect on me, I will be interested in how it effects me and how I react to the changes.  More to come.

Friday, September 23, 2011

Change of life!!

No, not that kind!  Or, maybe exactly that kind.  My son and his family, moved, very abruptly, to Pensacola Florida 5 weeks ago.  They had previously spent 8 years in the Finger Lakes area of New York.  Last winter was especially tough and they decided, enough is enough.  So, they now live in Florida.  We went to visit them this week.  Pensacola is nice.  I had been there before, but my wife had not.  I knew, my California born and raised wife would love it.  She did.  The beaches, the palm trees, the warm weather, it is almost as good as Hawaii.  Maybe better, since the grand kids are there!  We have been away from our family since they moved to New York.  We could not move there because we were both working and in the high earning parts of our careers.  Not to mention that we both strongly dislike cold weather, well enough snow up to your ear lobes!  But, now we are both retired, and, as you know, I am in the middle stages of LBD.  Still cognizant most of the time, and still able to cope with a move.

My wife has been sick over missing the grand kids and my son and his wife.  This week, we had a great time with all of the family.  I had the opportunity to go to my youngest grandson's school open house.  I met all of his teachers and interacted with him on issues pertaining to his adjustment to a new school.  It was wonderful for me!  I asked both grandsons, 14 and 12 years old, if they would like to have us live close to them again.  You may recall that we lived two door from them until the youngest was 3!!  In any case, both boys were ecstatic to have us close to them.  Of course, y son is worried about me and his mom.  Having him close would be a great help to my wife as I progress.  So, this is a big win to all of the family.

Of course, there are some negatives.  We have been in the Hampton Roads area of Virginia for 28 years!  We have many close friends.  My Navy friends are very dear to me.  I have many fond memories of this area and what it means to me.  There is also my Church.  I have NEVER been associated with a stronger fellowship of Christians in my life.  They have helped me, loved me, been my family for a long time.  Leaving them will be the hardest.  But, the pull of family is stronger than any other pull.  So, we are moving to Pensacola, Florida.  More correctly, the town of Gulf Breeze, Florida.  

It seems a vacation became a way of life.  At least, I hope so.

Tuesday, September 13, 2011


"Old Blue Eyes"  Frank Sinatra sang a song about; "Regrets, I had a few.." and he was right.  I have a number of regrets that I can now admit.  When you are young, healthy, and death is not a thought you have, you think that you are "bullet proof".   Don't believe me?  Look at the list of Medal of Honor awards.  All of them, or most of them are under 21!  Why, they think that grenade won't hurt them.  When I was young, and I injured myself on the ship, I rubbed it with my dirty rag and kept on going!  I had a number of concussions on the ship that I never told the "Doc" about.  Why, I was supposed to be tough.  Now, I am paying for that toughness.  Now, when I get a cut, I treat it properly so that I do not get an infection.  I am NOT "bullet proof" and I know it!  That was a tough truth to swallow, but I have indeed swallowed it, bitter as it was.

I have regrets about my Navy career that I have discussed at length in my other blog; "The Master Chief's Lair".  But one that I only admitted to myself, until now, is that I regret retiring at 20 years of service!  Yes, I probably made more money the way things turned out, but  left the career I loved.      I let my ego get in the way of my judgement.  My advice to all of you who are young, NEVER listen to your ego!  In every way, it will lead you down the wrong path, and you can't come back!

I regret that I wasted money on houses, cars, booze, guns, trucks, and other foolish endeavors.  Not because I need the money, but because it could have gone for good instead of foolishness.

I tried to be a good husband and a good father.  I tried to provide a secure life for my family, but truthfully, I could have done better.  It is the truth!  But, most of us probably have this regret if we are honest.  Just the same, at this point in my life, it bothers me.

There are things I wanted to do, like drive a NASCAR race car at a driving school.  My Neurologists says I can't do that now.  And my wife is enforcing that rule.  There are places I wanted to see that I will never see.  Why, because now, I don't have the desire to get out of bed, well enough take a trip across country.

I spend way to much time thinking about the "What Ifs" of my past, but the past is what I think of all day and those memories are beginning to fade also.  LBD and any Dementia is a cruel disease  because it robs you of today and imprisons you in yesterday.  You seek comfort, not adventure.  The known instead of the unknown.   Yes, I like the feeling of routine, comfort, and things known.  But I still long, every once in a while to live life on the edge.  But, i know that I would fall off now.

One other thought.  I am full of "Sea Stories" that I still love to tell.  But, no one really wants to hear them.  I write them in the other blog and many folks read that blog.  But, people around me grow weary of my "sea stories".  I don't know if it is because I am a dinosaur or because they never experienced what I did and they think I am not telling the truth.  Just rantings of an old man.  Then again, maybe most people today are not interested in a story about a young First Class Gunner's Mate, throwing up a stomach full of San Miguel and fried rice in a Captains from yard in Navy housing in Subic!  

Friday, September 9, 2011


Over  and I had to the last couple of week, I have been overwhelmed with a need to change my living conditions.   The over 55 apartment complex that we live in is fast becoming something it was not supposed to be, a place with kids!  It seems, the management has decided that, as long as ONE person on the lease is 55, any other age is OK.  So, we have teenagers, elementary school kids, and all the problems that come with them.  The parking lot has been littered more than once with broken beer bottles and I had to call the Police on a group of teens parked in our GATED, after mid-night, lot smoking pot!  So, I am less than happy.  Add that to the fact that the people who live over us still have the Rugby Team practicing in their living room and the new neighbors below us like to discuss their life at 1000 decibels.!

So, today we visited a "Continuing Care" community.  It is very nice, some what pricey, and probably not for us.  But, the visit still was educational, specially when the sales person told us I was not eligible for continuing care because of my diagnosis of Lewy Body Dementia.  That was very sobering.    But the sales person spent a few minutes telling me I did not look or act like I had LBD and I should get the doctor to say I was "Cured" and then after we were approved, we could go back to the way things are.  Then, on the way home, her questions brought up all of the old questions of, what if?

I explained to my wife that I am the recruiting poster case of LBD.  Just look at the LBD Association web sight and review the list of symptoms!  I have the "on and off" days and even hours, just as they describe.  Also, as I have discussed before, I HAD near photographic memory.  Ask anyone who served with me in the Navy, or anyone who was in GEICO Material Damage Adjuster's Course in 1989.  I could remember anything.  We had to memorize 200 components in the GM 400 Hydromatic Transmission in one night, no problem.  I aced the test.

The other part of this is that I can "ACT" like I am "Normal".  I can follow your conversation, inject a few comments, and you will think I am just fine.  But, I don;t remember what we talked about or even if we did.  So, after today, I have decided I am no longer going to try to look normal.  I know, I said this before, but, this time I am further degraded and I am tired of trying to make people comfortable with my condition.

So, from now on, people, even family are going to see the un-varnished effects of LBD on me.  Today was an eye opener and also very frustrating for me.  It hurts me to be told I am not ill and I am tired of hiding that pain and the effects of my condition.      

Monday, September 5, 2011

The American Health System

Since I remember things when I remember them, I wanted to bring up something that is relevant to my condition.  My Neurologist is a tenacious professional who, once she bites into a case, she will not spit it out!  She has treated me with dogged determination to extend my coherent life as long as is physically possible.  Once she reached the 80% solution on my diagnosis of Dementia,  she immediately placed me on the two newest Alzheimer's drugs.  She then sent me to UVA to get a second opinion.  No professional insecurity here!  The UVA folks determined it was Lewy Body Dementia as I have discussed before.  The UVA Doctors told my wife and I that my Neurologist was the reason I was doing as well as I am.

Here is what I wanted to relay to you.  I did some research on the British medical system.  What I found out is shocking. IN their system, they reserve Arcept and Namenda for the last six months of the patients life!  Now, what good would administering these drugs after the patient is already gone mentally and deteriorating physically to the point of failure?

Yes what I take is expensive, but it will extend my productive life and keep me from needing extensive medical intervention until the end.  My Father In Law lived in a nursing home, with Alzheimer's, for 7 years, at the States expensive.  There were no drugs for Alzheimer's then, and the State paid the price.  Now there are effective drugs and reserving them until six months before the patient dies is criminal.

So, the next time someone wants to tell you Socialized Medicine is good, tell them about Alzheimer's treatment in Britain.

Overwhelmed by the simpleist things

I had a very good day today.  I got some things done or well on their way to completion and I was feeling accomplished and more on top of things than I have in a few weeks.  Tonight, after dinner, I was relaxing in the living room and the telephone began to ring.  First a robo call from my Neurologist's office reminding me of an appointment.  Then a call from a friend.  By then, I was overwhelmed, angry, and overwhelmed.   It's not their fault, calling someone at 6 PM is normal, and acceptable.  It is me, or more precisely, the Lewy Body Dementia, that causes this reaction. 

My wife has noticed a more rapid progression in my memory loss and my lack of ability to deal with people and issues.  I get tired easily and she monitors my activities carefully.  However, I was doing so well today.  But, I should have expected this.  I have written before how a good day is always followed by negative issues.    Just the same, it was a good day, until this evening, so I should cling to that.

Another issue that is causing me emotional stress is my neighbors.  I have always had issues with the people who live above me.  It seems that had a football team that practices in their apartment everyday.  They stomp around, run the vacuum, and move furniture from 5:30 AM until 11 PM.  Now I have new neighbors below me and they like to argue, play their television loud and make the building shake by dropping heavy things!  I am surrounded by inconsiderate morons!  This is supposed to be a quiet, over 55, apartment complex.  Instead, there are more adult children moving in with their parents because they cannot provide for themselves.  Some even bring small children.   I might as well get an apartment in an amusement park.  It would be quieter!

OK, I am venting.  But the facts remain the facts and I am experiencing emotional issues because of all of this.  Maybe I need calmer quarters!  Maybe they need to be more respectful.  We will see.   It used to be that only BIG things bothered me.  Now, I am overwhelmed by the small things.  Lewy Body Dementia is working it's old magic I think!

Monday, August 29, 2011

Things I would like to know before...

There are some mysteries in my past that I really would like to have the answers to.   Not, who shot JR Ewing, or what someone would do for a Klondike bar, but there is one question I want to have the answer too.

Those of you who know who I am, may know that I was raised by some marvelous people, who loved me dearly, and I love them, but were not related to me genetically.  My mom and Dad did not have legal custody of me until I was 16.  By then I had got myself in a heap of trouble and my Mom took my shovel away to keep me from digging the hole any deeper!  She was wonderful!   You may also know that my biological Mother was in my life and friends with the people who raised me.  The question I always had, was who was my biological Father?  I was told fabricated stories about my biological father that are not worth going over again.  When I was 32, I found my biological Father and called him.  He denied the connection and I called my biological Mother and confronted her with the truth.   She called my biological Father and they worked out the problems of the past and called me back, telling me the truth and then I called my biological father and talked to him.  He did not really want to talk to me, so I got little information other than him telling me how bad a lady my mother was.  How bad could she be, at least she stayed in my life!!  I talked to him once more, a few years later, and got the same response.  He died in 1989.

He had a son, with his wife, about 6 months after I was born. He has the same name as me and since he is from the same hometown as me, he has a Social Security Number that starts with the same first three numbers, most likely!  I called him once and he was nice, but has never contacted me again and has refused to return my calls.  I understand their reticence since they probably think I was trying to get an inheritance , which could not be further from the truth.  My half brother is a successful, published, electrical engineer and a senior officer in an electrical company.  He has succeeded and I am happy for him.  But, he IS my brother, blood related to me, and I would dearly love to get to know him, to learn from him, about my biological father, and the medical history of our family.

Through the miracles of Ancestry.com, I have found my biological Father's parents, my grandparents, their immigration dates, death dates, names of my uncles and other family members.  I even met, briefly, my grandfather at a car dealership he worked at.  I was 16 and purchasing an automobile.  Of course, he denied being related.

I am 60 years old, dying from a progressive neurological disease that was most probably caused by exposure to a neurotoxic chemical related to my Navy career.  I don't need any one's money.  But I do need to be accepted by the people I am related to..  My biological mother had three other children after me that were ALL adopted out and I, most likely, will never find them.  But this brother, with the same exact name as me, from the same home town as me, I do know and can have contact with.  But HE does not want to know me.  And that bothers me, more than anyone knows.

How does this relate to my Lewy Body Dementia?  It sets my end date.  My memory is failing.  My ability to deal with reality continues to diminish.  Before my mind quits working, I want to sit down and have a long conversation with my brother, in person.   I believe I deserve that.  Now, those of you who raised me, have stood by me through all of my issues in life, and who stand by me now, know even more than I do.  These secrets have been well kept, guarded, for my protection, and I understand and appreciate that.  But I have to believe someone knows my brother and, maybe even the other children, that my mother had.   I want to meet then, not rob them.  What could you possibly be protecting me from now?   Someone do something, before it is too late.

Sunday, August 7, 2011

Thanks for the comments.

I really want to thank each of you who read this blog and specially to those who send me replies.  I began this blog looking for a connection to those who are traveling down the same road as I or are a care taker of a person on this road.  I deeply appreciate your experience and encouragement.  It is good to know others are on the same road as I am, even though I may not see them all the time.  You are probably old enough to remember the Citizen's Band Radio (CB) craze of long ago.  I remember we used to drive down the highway, looking for someone a long distance ahead of us to give is the road conditions and a "Smokey Report".  That's what this blog is, people looking down the road, looking for information that will make their trip easier, more comfortable, or maybe, just to share our experiences with. 

Almost anyone has had a tooth filled, a broken arm, or their appendix taken out, so we can always find someone with those conditions to commiserate with.  But Dementia of any kind is still not that common and finding someone to compare notes with is difficult.  But through this medium, and others like it, we can share and learn about our journey.

Again, THANKS for your comments and concerns.  You are all in my prayers nightly.  Keep your sense of humor and keep the faith.

Saturday, August 6, 2011

Keeping your sense of humor.

I have really curtailed my travel plans for the summer and my canoeing has been limited by the heat and my upper body strength loss, yet I still find thing about my disease that make me laugh.  For instance, I check to see if I closed the garage door numerous time throughout the day, yet I almost always fail to zip my fly after going to the bathroom!  That strikes me as funny.  Another quirk is that, even though my wife manages my prescriptions, I must know how many pills I take at each dose and I count the pills numerous times before I take them.  If I go to bed and don't personally check to see if the doors are locked, I must go back and check, twice.

Another quirk is that before my diagnosis, I took at least one shower a day.  Now, I really find showers annoying and only take a shower when I am going to be with people.  And, I only shave on Sunday!  I cannot remember to get a haircut and only go when my hair touches my ears.  Then I get it cut extremely short.  I used to get my hair cut every two weeks!

Still another change is my new introvert nature.  As I have written before, I always liked to be with people, crowds, and at events.  I drew energy from large groups of people.  But now, I only want to be home, with my wife, or with my best friends.  I enjoy only what I am comfortable with and do not like new experiences or locations.  I can go to our best friends home and be perfectly comfortable.  Why, because I have been at home in their home for 30 years.  But take me to a new place and I am not comfortable and I clam up.

I guess, I am just moving into the next phase of my LBD, at least that is what I read on WEBMD.  My inability to deal with extreme temperatures, extreme sweating, inattention to life's details, all point to my progression.   No big deal, just the facts.  As a tech rep friend of mine says; "It is what it is".

So, that's where I am today.  I am still interested in what tomorrow will bring.

Tuesday, July 26, 2011

Me and the dog have locator chips!!

Today, I was enrolled in Project Lifesaver.  It is a wonderful service that the Virginia Beach Police Department offers.  I might add that many police and sheriff departments across the country offer this program.  You can Google "Project Lifesaver" and get the information for your area.  The bottom line is, it will save an individuals life if they wander away.  Why do people wander, Dementia, Alzheimer's, Down Syndrome, Autism, any number of medical condition.  How does it work?  I wear a small transmitter on my wrist that looks like a wrist watch.  It has a transmitter with it's own frequency, specific to me.  Then, if I wander, the police can use receivers in their card and in the helicopters to locate me.  How fast can they find me.  They did a demonstration a few months ago.  They hid a transmitter and then had the police look for a missing person.  It took 38 minutes to find the transmitter in the largest city in Virginia.  Not bad!!

I was visited by a police officer that, it turns out, was a retired Navy Senior Chief.  We shared some mutual acquaintances, so we had fine time reminiscing.  He fitted the device and told my wife about all the features and services available.  He was very informative and very concerned for my welfare.  The city will have someone come by our home once a month to change the battery and make sure everything is going well.  What is the cost of this peace of mind?  $108 per year and that includes batteries, wrist straps, and a testing set.  I find that very reasonable.

If you have a spouse or family member that is suffering with Dementia, I strongly recommend this service.  Hopefully you won't need it, but it will permit you to sleep more soundly at night, knowing your loved one is protected.

I felt much more secure knowing my dog was protected from loss by a "Chip" and now my wife can feel that same sense of peace.  I am glad she took the initiative to protect us.

Sunday, July 24, 2011

Not a complaint, just a report.

I don't want you to think that I am complaining, I am not.  But, as many of you know, one of the purposes of this blog is to record what I am going through.  Why, to inform my family and others, to learn from others affected by LBD, and to solicit feedback from care givers and LBD patients. 

Recently, I had my son and his family visit for two weeks.  Now, it was not the entire family for two weeks straight, but more of a depot of family travel.  Both grandsons spent a week in a Christian summer camp.  My daughter in law went to another state to search for their new home, and my son traveled for work for a few days.  So, the company I had was as high as four and as little as one.   Just the same, it was company. Why do I say it that way, because company disrupts my routine.  Now, that is not totally a bad thing.  Sometimes, changing my routine is good for me.  It takes me out of mu comfort zone and makes me adjust.  But, company also brings with it the feeling, for me, of being invaded!  You know, like Sherman's march to the sea!  If you don't know about that disaster, blame Yankee, liberal, public education.  In any case, as much as I like to see family and friends, 2 weeks may be too much.  Another issue with this visit is the going and coming of the visitors.  Again, I am routine driven, and the changing of the numbers of people staying in my home was difficult for me.  Trying to keep track of who is where upset me and my son noticed that.  My wife did make a calender of the people shifts and that helped.  She is the master of organization.

Just the same, I learned or confirmed some things.  One is, I withdraw into myself when I feel invaded.  This is interesting because I used to be a type "A" extrovert who drew energy from crowds.   Second, I see my bedroom as my safe zone.  Sort of a safe room from the invasion.  I would retreat into my room for naps, quiet time, or early bed when I was overwhelmed.  Third, most people still don't know how to deal with me.  My son said that he noticed a degradation in my condition, and he made adjustments in the demands he placed on me.  He realizes that I am not the man I once was.  Yet, he still lives in denial and expects me to be able to be as active as I once was.  One editorial note here;  I still feel that people don't think I am sick and they won't until I am drooling on my shirt and going to the bathroom in my pants!  I still look too normal to the outsider.  Trust me, try looking at life from inside my head!  Things are distorted from my point of view.   Another thing I noticed is that outsiders expect life in my home to equal what they have in their home.  For instance, noise, especially at night, causes me to react negatively.  My wife and I had made accommodations so that the television volume can be kept low while allowing her to hear it.  However, others in the room cannot.  Company has the unreasonable expectation that they should be able to hear the television at the same volume they can at home.  At least, that is unreasonable to me.  Noise of any kind is a problem for me!  Finally, because of my LBD, I am more routine driven than ever.  Everything MUST be in it's place, neat, clean, tidy.  Anything less agitates me.  I must be able to find things immediately or I feel out of control.  Of course, when you have company, things get moved, shifted, and rearranged.  This is a problem for this LBD patient.  One other issue that has become a problem, and it was amplified during this period.  I MUST know where my wife is at all times!  When I come back from taking the garbage out or walking the dog, if my wife is not where I can see her, I call out and locate her.  Then I go see if she is really where she said she was.  Why, she is my security.  If I know where she is, my world is right.  This may become a problem for her down the line.

As I have written before, I truly believe I am entering the middle innings of this disease.  And I know, from research and experience already, that these innings will not be near as easy as the first few.  I know that I am facing the heavy hitters on the LBD team!

Again, I am reporting and recording, NOT complaining.  So, don't be offended, just learn from the experience.  I really enjoyed the visit and I did tell my son that shorter visits may be necessary in the future.  But for now, bring on the visitors, as long as they understand my issues and quirks.    All in all, we all survived the invasion, and maybe, we learned from it. 

Tuesday, July 19, 2011

New issues, and I need your inputs.

OK, I need the experience of those of you who are care givers or patients with Lewy Body Dementia.  In the last two days, I have developed a severe cramping in the back my left leg, behind the knee.  It is scary, sharp, immediate, pain that subsided after a few minutes.  It happens standing or sitting.  There appears to be no rhyme or reason to it.  The one thing I can add is that Sunday, three days ago, I missed all of my meds.  I just got mixed up.  I was fully back on schedule on Monday.  Anyone who has this issue, please let me know.  I am interested if it is associated with the Parkinson's side of LBD or another issue.  Pains don't usually scare me but this one, coupled with the LBD progression has me worried.

On a separate note, I have told you that my symptoms seem to be increasing in severity.  This pain has me thinking that the next chapter of LBD may not be as easy as the first.  In any case, you inputs would be appreciated.

Friday, July 15, 2011

A roller coaster ride.

I was sitting here in my computer room, looking over past posts.  Why, because I don't remember what I wrote for the most part.  Sad but true.  In any case, as I looked over my postings I realized that the last 6 months have been a roller coaster ride of symptoms, problems, and doctors.  There have been good days and some not so good.  My symptoms have been better some days and worse others.  Just like the symptoms of Lewy Body Dementia.  I say that, not to stick my finger in my neurologist's eye or any of my doubters, but as an affirmation of good research.  I can doubt my own illness and the diagnosis of numerous doctors on the days I feel good.  So it is good to know that I am not going crazy, it is LBD that is changing it's mind as ofter as a two year old.  Understanding that is the key to dealing with this disease.  I am convinced that this roller coaster ride will continue for the foreseeable future and that the big hills are yet to come.  But, understanding what I have and how it acts is the best defense for me.  If I know what I face, I can understand my issues, and not be frightened.  That is why I pushed for an exact diagnosis and that is why I can deal with this in such a positive manner. 

Thanks to all of you who support me in the many ways that you do. 

Thursday, July 14, 2011

Social filters no longer work!

Over the last few days I have learned and demonstrated that my social filters no longer work like they used too.  I looked at the Lewy Body Dementia Association web sight and it is a documented symptom.  I know my Neurologist will say; I was expecting this!  She said the same thing when I acted out a dream in my sleep and punched my wife in the head!  The fact is, parts of my brain are malfunctioning due to the effects of this disease.  Just like my problems with memory, my brain is showing more and more effects of Lewy Body Dementia.  While I am concerned about this, I am not upset because I know it is a normal part of LBD.  However, people that I interact with don't understand this fact.  I have thought that maybe, I should buy a T-shirt that says; The person wearing this shirt has Dementia!  Or, the person wearing this shirt is subject to loud, emotional outbursts for no apparent reason!   I can't wait to see the look on someones face when they see that T-shirt on me.

I am not making excuses for my actions, but I am asking for understanding.  Loosing my temper is wrong, but there are mitigating circumstances.  So, I continually work on my emotional actions and pray that I will be civil, courteous, and polite to everyone I come in contact with.

Tuesday, July 12, 2011

I remember what I remember.

My Lewy Body Dementia has "Progressed" to a new lower level.  I am having more stiffness, difficulty walking, jerking in my legs, and increased memory issues.  My walking has shifted more to a shuffle unless I really get going.  I also had the recent anger issues that I discussed before.  Those issues seem to be staying with me, much to my wife's dismay.

All of the issues are beginning to weigh me down.  My LBD has ran along at a stable level for some time, but now it seems to be accelerating.  While some people are negatively impacted by these events, I am not.  I have actually felt like I was waiting for the other shoe to fall for quite some time and it has been unnerving!   I get upset, as I have written before, with people who tell me; "You are not sick!  You look normal!  I forget things too!"  They are all trying to marginalize what is wrong with me because they are uncomfortable with my disease.  I saw an article about Glen Campbell's recent statements about his Alzheimer's Disease.  His wife said keeping him singing his music helped him retain his memory.  My statement to my wife centered around his wife's selfishness.  Her desire to keep Glenn "normal".  To keep that "shoe" in the air.  Well, I will not try to talk for Mr. Campbell, but for me, I want my LBD to progress and finish!

Can you imagine living with a tooth ache that the dentist could not fix, drugs would not subdue, and you could not get away from?  Well, that's how I feel.  My legs, arms, shoulders are stiff and hurt.  I can't sleep at night.  I see, hear and feel things that are not there.  I am suspicious of people  and I am angry at things that I probably should not be.  I am even having problems writing this blog.  My attention span is so short that I have problems concentrating.  And don't let me forget that my "Social Filters" are now so broke that I say anything to anyone.   I am not the man I once was, in so many ways.

All of these changes effect ME more than anyone else because I know better than anyone else that I am different.  My mind does not work like it used too and that effects everything else.  Ten years ago, I had the ascending half of my colon removed because of a tumor.  No big deal.  The surgery was relatively uneventful and I recovered and went back to work.  Maybe not as strong as before but good.  The only real side effect was that I went to the bathroom way more than before.  But, that made sense, I had half of the storage capacity.  Now, thanks to my LBD I suffer from constipation!  Try that with a 50% smaller tank!!

So, as I said, I really want the other shoe to drop.  Let's get this show on the road.  I am ready.

Saturday, July 9, 2011

Old Navy sayings

In the Navy, it was always said; "One aw shit wipes out 100 compliments!"  Actually, the last term was at-a-boys, but I thought I would loose you with that one.  Yesterdays anger out burst is certainly the "aw shit" in my week.  I was doing fairly well.  Cruising along as it was.  I even went out alone to get a haircut at the Exchange and do a couple of errands.  That was Thursday and even though I was emotionally drained when I returned home after 3 hours away, I felt like I was going to have a few good days.  Then, the anger out burst happened and I am again questioning my position in the progression of my disease.  So is my wife.   Yes, we did one too many things yestrday, but I get tired of not accomplishing things and we had to go to the Commissary in prepare for our family's visit.  But this event has shaken me to the core.  I woke up at approximately 1AM having a fight dream and violently punching my wife's pillow.  She woke me up, probably after she retrieved her catcher's mask.

This has been a difficult pill to swallow and frankly I am choking on it.  I am going to try to go back to sleep.  However, I am not done beating myself up over my lack of self-control.

Friday, July 8, 2011

Lewy Body Dementia diagnosis issues

OK, I am calmed down now and I do have some information from today's doctor's appointment that I wanted to discuss.  As you may remember, my Neurologist sent me to a Psychiatrist to address my hallucination issues and to further solidify the LBD diagnosis.  Why she wants to keep looking at the diagnosis, time and time again, is beyond me.  If you look at any of the information on LBD, I fit the mold exactly.  But, she wanted one more input, so I went.  The Psychiatrist tried me on a drug that was of the family that caused me anger issues before.  That problem is consistent with LBD, and this time, I actually had more issues with the drug than before.
So, it  is a lead pipe cinch that I have LBD and no one can deny that.  Today's uncontrolled fit if rage is also a sign that this disease is progressing.

So, what's next?  I know why my Neurologist, who I really do like and respect, has been so reticent to diagnose.  Why, because it has a definite life expectancy.  The average is 2-7 years with the outside edge of 20 years.  I probably have had this disease for 2-3 years so we are passed the 2 year limit.  And the health of the patient is s big determination on the life expectancy.  But, this definite diagnosis is exactly what I wanted.  To know what I actually have and to know what the prognosis is gives me closure.  Some folks may not like this definite diagnosis, but I do.  Tell me what I have, how we deal with it, and how long I have.

So, now we have it.  I hope my Neurologist is happy because I am done with looking under rocks for the phantom diagnosis.  We have Lewy Body Dementia, there is a time limit, and we will deal with that.  I am in relatively good shape still, and I have a good attitude, so those factors are in my favor.  I will deal with the challenges as they happen and not borrow worries from the future.  This will take as long as it takes, and I am OK with that.  I feel at rest and confident in this diagnosis.

Overflowing ANGER!!!!!

Today was a busy day. I had a doctor's appointment, we had to go to the Drug store to print some photos to mail out, go to the post office and finally, go to the Commissary in preparation for my Son and his family's arrival.  Oh, we had to go to the Credit union also.  In any case, buy the time we got home, I was at my mental end.  That happens to me and it is part of my disease. But it still surprises me and today, it manifested itself in ways I have not seen since I was diagnosed.  Let me continue to explain.

We pulled into our peaceful apartment complex and I parked the car.  Went to the garage and retrieved the cart I use to bring the groceries up to our third floor apartment.  It is easy because there is an elevator that always works.  Well, almost.  Linda pushed the button and no elevator.  She walked to the second floor and the new people moving into a second floor apartment had the elevator blocked with furniture and boxes, and were using the elevator as a staging area for their move.  They were in no hurry to unload the elevator.  They told me it was THEIRS!  That's when the overflow of ANGER occurred.  Now normally, for many years, I have been able to control my rage and use it to my advantage.  But today, when they treated me as they did, my anger overcame my ability to control it and the old Master Chief came out in spades!!!  I spared no profanity, volume, or vibrato to tell people that the elevator was not theirs.  Then I stormed over to the complex manager's office and gave her and her staff a wire brushing the likes of which they have never seen before and likely will never see again!  If I was in uniform, people would have applauded.  But, I am retired and those sorts of outbursts are frowned upon.  Looking at this paragraph, maybe I am still a little emotional about this event.  You think!

I should have not exploded like I did and I owe a large group of people an apology.  Yes, I have already started, thank you very much!  But what startled my wife and myself is the speed at which I spun up and the level of anger I exhibited.  I was ready to fight!!  And fight to the death!  I was mad with anger and I have not been that way for 25 years or so.  I actually saw red before my vision narrowed down to the grey of combat.  That myopic, single minded, tunnel vision one gets in combat when you only have one thing on you mind.  Never had it?  Good for you, but I have and I don't like it anymore.   This was the first time I was out of control when awake.  Not a good sign.

So, what do we do about it?  Well, I have to realize I have limits in the things I can do in one day.  I have to realize that I do not have the coping mechanism to control my emotions fully anymore.  And I need to pray for the Holy Spirit's help in dealing with my disease.  I also need to listen to my wife's quiet, calm voice and calm down.

I am ashamed of myself!  This is not an acceptable way to act.  I should have discussed the situation with my new neighbor.  If that did not work, I should have discussed the situation with the complex manager.  Both conversations should have been civil and calm.  Not violent and at 1000 decibels!  Of course, I think the neighbor could have mitigated the situation by offering to help me carry my groceries up instead of telling me I was a cry baby.  And the apartment management could let the other residents know when they are authorizing moving in tenants to take control of the only public elevator in the building.    But that is my opinion.  Needless to say, I have a number of bridges to repair and I have started by asking GOD for his forgiveness.

This disease is beginning to take more and more control of me and I don't like it!

Post Script;  I have apologized to everyone concerned.  They were all very gracious and kind to me.  I did not tell them about my disease because I do not want to make excuses for my terrible, unacceptable, behavior.  I was wrong and I am still ashamed of myself.

Saturday, July 2, 2011

Memory loss progresses

I write a blog about my Navy days that I truly enjoy.  I have written many stories from my active duty and civil service days from memory.  And that has been good for me.  It has enhanced my memories and has given me pleasure.  My wife and my Neurologist both encouraged me to continue the blog as long as I could.  Well, we are reaching the end of the road. You see, I am having more and more difficulty remembering my past!  Up t now, I had very good recall of the past.  It was the short term memory that I had issues with.  No more!  Now I can't remember the past.  I remember parts of stories, but the majority of the story just is not there.  I feel like I am looking into an empty container!  I know something is supposed to be there, but I can't find it.  
Is this temporary?  I doubt it.   I think this is the next step.

I have felt diminished in my mental and physical capabilities for the last week or so and that coincides with my inability to recall the past.  So, what do I do?  Live with it.  There is no alternative.  So, if you read my Navy blog;  "The Master Chief's Lair", I may be slow in my posts.  But I will keep trying.  That's me.    

Thursday, June 30, 2011

New Drugs, old problems

I wrote earlier about my second visit to the Psychiatrist.  He is a good doctor and he listens to me.  I guess that's what shrinks do.  But, he conveys a sense of caring and I trust him. I previously had a bad reaction to a group of medications that lead my Neurologist to the Lewy Body Dementia diagnosis.  Well, that bad reaction and every other symptom listed for Lewy Body Dementia.  A blind man on a galloping horse could have diagnosed that one!!  But, just the same, the Psychiatrist wanted me to try a drug in that family to try to deal with my hallucinations.  Because I like him, I tried the drug.  But let me be clear, my hallucinations don't bother me.  I am not frightened by them, and sometimes they amuse me.  I will admit, the first person I saw startled me.  But the dog did not bark, so I figured he was not there. As long as I have the dog, I figure I am OK.  Right?!

I took the pills for 3 weeks, and the same problems happened, plus a few.  What symptoms?  Mean, argumentative, grouchy, can't sleep at night, constipation, did I mention grouchy and mean!  My wife finally took me off the pills and after a few days, I was back to normal.  Well, as normal as I get these days.  Let's just say I am manageable.

So, what did we learn from this little pharmaceutical experiment.  I have Lewy Body Dementia.  Don't give me drugs from that family unless you want a grouchy old man on your ass with a memory disorder and a bad attitude!

Monday, June 27, 2011

No more travel!!

Let me tell you a true story.  Last month, my wife and I decided to take a big car trip.  We used the computer and mapped out a route through several states, to see recently found relatives in two states and an old Navy shipmate.  I made a hotel reservation at the Holiday Inn Express, Grand Island, Nebraska using Expedia.  Then, the next day, after sleeping on the idea, we decided 3 weeks on the road would be too taxing for me, for obvious reasons.  So, we tried to cancel the reservations through Expedia.  They said NO, because it was an nonrefundable reservation!!  I called the Holiday Inn Express and they said the same thing, only in a much more disrespectful tone.  I have called Expedia three times, talked to some reasonably nice people at their call center in Manila, PI with nothing more than an "I'm sorry".  This is a $134.00 lesson in don't use Expedia.  Even my credit card company told me to suck eggs!  But wait it gets better.

We decided that we still wanted to see this one, newly discovered, 96 year old cousin, on my wife's side, in a deep southern state that floods every time someone spills  glass of water.  So, we made air reservations, but this time, I decided to go straight to through airline, Delta.  I used their site and it did tell me it was an nonrefundable ticket, so I bought the trip insurance, another $66.00 per ticket.  Then the Cousin got sick, supposedly with walking pneumonia.  She wanted us to delay our trip to August.  No problem, I have trip insurance.  Ney, Ney!  It does not cover sick cousins!!!  So, I had to pay $150 per ticket to change the reservations!!  I am betting the trip gets canceled in August so I can write off the other $1500 in airplane tickets and make it a trifecta!!

I really don't want to travel anymore.  It is just too taxing on me.  Yes, I like to go see my Son and his family, and I like to go to Cleveland and see my family there, but those are known destinations with known beds to sleep in.  But travel to strange places on airplanes, sleeping in hotels, is no longer a good idea for me.  Not to mention that there are companies out there ready to rip you off every time you give them a chance.

Do I want you to boycott Expedia and Delta, that's up to you. But I will never do business with either company again.  I explained my medical issues to both companies, was completely honest, and they took my money.  OK, they win.  But I learned a lesson.  I just wish it did not cost me $2000!!