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.