Thursday, June 30, 2016

The angst of my LBD journey is increasing

If you are a regular reader of my blog, it is apparent that I am having more and more issues with LBD.  I am more angry, more distracted by noises and things around me, and more reclusive.  The new vision issues just make things worse.  My memory is even worse.  Yesterday, I saw the lady that fill sour drug prescriptions on Monday, Wednesday, and Friday.  I asked her what she was doing here today?  She informed me it was her normal day, Wednesday, to be here!  I truly did not know it was Wednesday.  I am not connected to daily life at all.

Others may not see my condition worsening, but I do.

New vision issues

Today, I was looking at my computer screen and a column of symbols started to move from the left side of the screen to the right side and then back!!  This was only observed in my left eye.  This is a strange new occurrence.

I have also had increasing difficulty seeing print.  I have to make the print very large on the screen to make out the letters.  So, it seems the Lewy Bodies have found a new place to mess with!!

I no longer read books or magazines because of the print.  My computer gives me the ability to increase the print so I can see it.  But the moving left column is a new challenge.  I will track that.

How I am treated by others

I just had a discussion about my perceptions on how others treat me.  I truly did not want to have that conversation and I did not go as far as I want or need too, because I do not want an argument.  It is not healthy for me to get aggravated to angry.  Trust me.  But her point is others do not see me as I do or as she now does.  OK, I am will ing to admit that most people are self-centered, blind, idiots!

If I tell you I have LBD, and I take all the Alzheimer's drugs at a BIG cost, don't you think I have LBD.  And if you knew me before you would know I would NEVER give up my driving privileges willingly.  Nor would I sit around with nothing t do and be happy.  Nor would I take 4 hours naps followed by going to bed at 7 PM on a regular basis.  I used to be energized by crowds and now, I cannot stand to be with more than a few people at once. Would I use a cane?  How about falling down.   Every thing about me has changed!  And people that know me think I am faking this disease!!

When I tell people about my symptoms they tell me they have the same issues, but stye are worse than mine!!  OK, where is your Doctor's prescription for Named, Arecept, Razadyne, Effexor, and other psychotropic drugs?  Look folks, this is  not a rash.  It is a degenerative, neurological, disease that is killing me!!

No, I am angry about the manner than people treat me.  I understand it is part of my disease to have these issues.  But, no one else seems to understand me.  Maybe they just do not care.  And by the way, I wanted to interject some strong Navy Master Chief language into this post.  But, I didn't.  Lucky for you.

Wednesday, June 29, 2016

A virtual tour of Dementia

Covenant Care here in Pensacola is holding a Virtual Dementia Tour, for caregivers and relatives of Dementia Patients.   Their telephone number is 850 202 0928.  The contact person is  Audrey Wippler.

The reasons I bring this up are multiple.  First of all, no one, except us who have Dementia, know what it is like.  I try to relate m experiences to those who read this blog.  But, even my attempts miss the mark.  Second, doing something in the virtual world should appear more real to the person and therefore more shocking.  And that is what Dementia is to the perception of the Dementia patient, shocking!!

My wife is signed up for one of the experiences.  I hope others close to me will sign up too.  And I hope this experience will be made available in other cities.  After all, if it is available in a backwoods, hick town like Pensacola, a big city like Virginia Beach should have it also!!  Did I tell you I hate Pensacola?

People stay away from me

A tender touch, rustling my hair, a hug or kiss, an intimate conversation, all seem to be things of the past.  Visitors are few.  If I want contact with people, I have to initiate it.  And truthfully, I am not in the mood to beg for anything!

Look folks.  LBD is not contagious!  It is not like the flu, hepatitis, or scabies.  It is not a sexually transmitted disease.  If I kiss you, you will not get it like mononucleosis.  If we make love, you will not get LBD like the Clap!

It seems the things I want the most I get the least.  This drives me deeper into depression ad isolationism.  I am alone in a crowd of bodies that want to avoid me.  I am ignored, avoided, and shunned by almost anyone that knows I have this disease.

My bed is my refuge.  Sleep is my friend.  The things that once entertained me now enrage me.  No one knows or understands how I feel and their actions tell me they do not care and do not really want to know.

There are a couple of friends that are always there for me.  But, they have their lives too and they live far away.  Florida is a prison for me.  LBD is the death sentence.

Friday, June 24, 2016

Unable to control thoughts

I am loosing control of my thought process.  I obsess on negative thoughts that probably are not true, but may be.  This is a new issue, so my mind vacillates between the thought being true and the thought being false.  I am unable to change the thought process and defer to something less stressful that I like and have no personal capital in.  I am reticent to give you the topic of my consternation, but it is personally upsetting.   I realize I am progressing into unknown mental territory.  But, I am also unequipped to deal with this alone.   I have done some Internet searching with little help.

I the past, before LBD, I could change my thoughts to different topics and relieve the frustration.  Or, I could use facts to defeat the negative thoughts.  Neither of these processes seem to work now.  It is curious how my mind confuses itself and me.  It is frustrating to loose the life coping tools that served me so well all my life.

I have done some more research and I will not tell anyone what my issue is because they will use it against me.  It seems this is a larger issue with LBD patients and therefore, I will try harder to deal wit it only own.  I need to be strong and stay in control of my thought process.

Thursday, June 23, 2016

Live or die

Literally, that is a decision I face everyday.  I see talk about the number of Veterans that commit suicide everyday.  Nobody really cares if the Veterans commit suicide!  As a matter of fact and action, the Veteran's Administration is glad we are committing suicide!

Yes, the VA and the Military help Officers.  But the common Enlisted Man is a burden to the government and they would much rather we just shut up, and die quietly.

I cannot get any assistance from my Congressman on my VA appeal, even though he is the Chairman of the house Sub-Committee for Veteran's Affairs!!  Why, be cause I am not a Flag Officer and he does not care.  I am a burden.

But, this post is more than my complaints about how our Government treats us and sees us.  It is about the fact that everyday is worse.  I cannot see any way out.  I cannot make any decisions that will change how my life progresses.  So, I am in a hopeless position.   Hopeless because I cannot change my status, effect my condition, or do what I want to do.  I am in the same status as a child.  Dependent on others for everything.  Since I was 16, I could get in my car, go somewhere alone, and do something.  Even as a married man, I had time to go do things with friends.  Shooting competitions, gun shows, boat shows, car shows.  No more, and no one to go with.

I am not suicidal, but I an no longer interested in living either.  I do not see any joy in life.   Only decreasing existence leading to even more debilitating issues.  Life offers nothing exciting, enjoyable, or challenging.  The only bright point is, at some point I will not know I am in as bad a condition as I am.  Now there is a bright spot!  Come on Dementia.

I think every Dementia patient deals with this.  I believe it would be better if I was with other Dementia patients and with people that accepted me as I am.  Instead, people continually tell me I am not sick, the doctor's were wrong, and you are fine.  Treatment like that does not encourage me to live.  I makes me feel worthless.  Te same way the VA makes me feel.  I have been a throw away person since I was born.  According to the Government I served for 40 years, I still am.