Saturday, May 28, 2011


More and more, I want to be alone!  Some of you say it is because I am depressed.  I do not agree.  The psychiatrist I saw last week had the same opinion, but I still disagree.  He is wrong, I am not depressed.  I do not want to harm myself.  I do not feel worthless.  I just feel safe, unthreatened, comfortable, in my familiar surroundings.  I know where things are, I can control access to my world, I don't have to meet other people's standards of dress, grooming, chatter.  I can play solitaire on my computer and retreat into a safe cocoon.

I will admit I have lost my desire to be in crowds, to be social, to do things, but I am not depressed.  When I want company, I go out.  Shopping, walking, to dinner, whatever.  I enjoy canoeing with my Wife.  I enjoy walking in the quiet of the morning or evening.  I enjoy being alone with my thoughts and my memories.   Please don't try to label my actions or try to analyze me.  Look at WEBMD.  This IS Lewy Body Dementia.  In the beginning of my struggle, I was more able to be the way I was.  Then for a season, I tried to be the way that I was.  Now, I have quit trying.  I am what I am, as Popeye said.  I believe he was right!  Or, as a friend who is the In Service Engineering Agent for the diesels on the MCM class mine Sweepers says;  "It is what it is."  Those are both good descriptions of how I am doing right now.

Friday, May 27, 2011

I am becoming a hermit!

This disease is turning me into a hermit!  I have lost my desire to go out and be social.  I have known this, in theory, for a while.  But today, during my first appointment with the psychiatrist, I actually understood that I was a hermit!!  Before the LBD, I was a very extroverted, gregarious, person who thrived on crowds, people, and gatherings.  Now, my wife who is an extreme introvert, has to schedule any social gathering and drag me out of the house.  The real sad and disturbing part is, I am comfortable just being home, alone.

One positive thing, if there is anything positive, is that the psychiatrist told my wife and I that my hallucinations, the memory problems, the changes in my personality, are not psychiatric or in my mind, but are neurological and related to my disease.  That is comforting to me.

Friday, May 20, 2011

New acquaintences

I have always enjoyed meeting new people.  I enjoy the interaction with people.  What I don't enjoy is the reaction I get from people when I tell them I have Lewy Body Dementia. Most people deny that I have the disease.  In most cases, in a mostly polite way, they call me a liar!  So, I try to put on a "show".  That facade is one of a normal person, someone without LBD.  That "Lie" causes me stress.  That argument within me causes a mixed emotional problem that has been upsetting to me for quite a while.  But today, I met a person that treated me like a person who was telling the truth and it was liberating!

That person lives in our "over 55" apartment complex and is a  registered Nurse that works with memory impaired people.  I met her walking my dog.  She was walking her dog also and they seemed to get along.  As the dogs discussed their day, she and I began to get to know each other.  As we talked, she began to ask questions that only a person very familiar with LBD would ask.  After what seemed like a few minutes, she was telling me to let my wife know she was there to help if we ever needed her.  That acceptance of me and my disease was liberating and it was the first time that anyone has really accepted me and my issues.  She never said, "You look fine", or "you don't have anything wrong with you".  I have been told that everyone has the issues that you have, and that they are just part of ageing.  That is just not so, and they know that.  So, I have to believe that they are uncomfortable with someone with a degenerative neurological disease that leads to death.  Either that or they just enjoy causing me pain.

Today was a good day.  I decided it's OK to be sick.  I decided it's OK to have LBD.  And, I decided it's OK not to try to please others by pretending that I am something that I am not, that is normal.  I am me, a man with Lewy Body Dementia.  A man with a memory disorder and other mental issues that effect me mentally and physically.  A man who still has much to give, but may need some help remembering what that is.

Tuesday, May 10, 2011

Nights, I hate them.

I know I have written about this problem before, but it is truly getting worse.  I can actually feel myself getting emotionally wound up, angry, depressed, and restless, as soon as the sun starts to set.   Anything can set me off and it is all that I can do to keep my powerful emotions under control.  I certainly do not want to get angry with my wife.  She is innocent.  But I am not good company after dark.  I drift from the computer room to the living room and back.  Solitaire of Free cell on the computer tend to calm me, but I tire of them quickly.   I really don't want to do anything, noise, voices, motion, anything agitates me.

Looking forward to going to sleep is not a pleasant thought either.   If I do sleep, I dream constantly all night.  Never good dreams.  Mostly frightening and sometimes horrifying dreams.  Sometimes I wake to hallucinations.  Sometimes I just wake up and get up, spending hours at the computer.

This is really beginning to bother me and I don't know what to do.  I have some meds to take, and I do, every night.  But, they don't seem to take the edge off.  I have an appointment with a Psychiatrist the end of this month, at the bequest of my Neurologist.  Maybe he can help.  We will see.  My worry is that nights will be my down fall and the reason I am institutionalized someday.  Again, we will see.

Monday, May 2, 2011

Permissions post

Permissions post.

Sunday, May 1, 2011

Tired, disoriented, overwhelmed, and I don't want to do anything.

One of the ear marks of Lewy Body Dementia is the syndrome of, "OK today and terrible tomorrow".  Really, one day, I feel OK.  Not great, and worse than I did a year ago or so, but still, better than I feel most of the time.  Then the next day, I am in a daze, disoriented, overwhelmed with life, people, noise, and I am overcome with the desire to do nothing!  The idea of leaving the apartment is more than I can bear.  People are caustic to me, and I am mad at the world. 

Since I am so dependent on my routine, part of me wishes my disease would stabilize and I would feel the same, or decreasing everyday.  I realize that is not the way LBD works, and I really do enjoy the good days.  But, I also know, somewhere around the corner,  lurks a bad day just waiting for me to be too comfortable with the good days.  Ready to pounce on me and make me feel terrible, grouchy, depressed, and confused.

Along with this, my neurologist and I agreed, two weeks ago, to have me stop taking Sinemet.  I took this for the Parkinson's symptoms, and it worked.  But the medicine makes me nauseous and that problem was increasing.  So, we stopped Sinemet and now my legs and arms ache.  Not terribly, but noticeably, especially at night.  My legs actually feel like thy are drawing up towards my body.  I stretch, and that helps.  I also depend on my cane more than ever and get tired quickly when walking.  I even use the elevator in our apartment building.  Before, I used the stairs to get some exercise.  But now, most of the time, my legs feel weak and the stairs are a big challenge.  I do not want to go back on the Sinemet, so I WILL find ways to deal with these issues.  The pain is better than having the "Dry Heaves" every 6 hours.

If you ask me today, how this disease is progressing, I would say, that is is gaining in speed and power.  But tomorrow, I may feel like I have the upper hand.   Today, I am tired, jumpy, mentally disoriented, and very overwhelmed.  Tomorrow, I may want to be with people, have a clear understanding of my surroundings, and not be such a grouch.  At least, I hope so.

I don't mean to sound so negative, but I use this blog to keep friends and family informed of my progress.  I also use it as a mental outlet for me.  Both serve a needed role in my life.  Some of my friends and family are out of state.  Some folks are reticent to ask how I am doing, because I normally say; "OK" when I really would like to tell them what is really going on.  But, I ramble.  I will keep you all informed. 

Hoping for a better day tomorrow.