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.

Wednesday, June 22, 2016

Home is NOT the best place for a Dementia patient!!

As you may know, we live in a Continuing Care Retirement Community.  This is a wonderful community with some great people.  We live in Independent Living with people that are anywhere from fully independent to needing full time help and probably need to be in Assisted Living or even Skilled Care.  I have also written before that I feel more comfortable with other Dementia patients than I do with non- Dementia patients.   Well, tonight I saw one of those commercials for the home care giver industry tell you the best place for your Dementia patient is at home!  That made me decide to write this post.

I expend inordinate amounts of energy, everyday, to look and act normal.  When looking normal and acting normal is the worst thing for me!!   I play billiards on Sunday and Wednesday night and those two hours are exhausting!  I enjoy the fellowship and playing billiards but two hours is all I can stand!!

Being with other Dementia patients is relaxing.  We all have the same issues and we all understand how we deal with those issues.  Our community is offering a course for Dementia caregivers to experience how Dementia patients see life.  I am not sure if they use computers, virtual reality, or movies, but my Wife is signed up1  Even she does not know how I view life, even though I have spent much time trying to explain.

A safe, cocoon community, with caring, professional, caregivers, another Dementia patients that are housed in like cognitive ability groups is the best of cases for us.  Communities that simply put an escape bracelet on the Dementia patient and leaves them to their own devices is the least acceptable.   But, even at that, atlas you can find someone like you, to be around.

Another past memory is how my Father in Law was effected by outings away from his care facility.  We did not know taking him out to dinner was bad of him, but we learned the hard way!  Taking Kurt out of his cocoon upset and disoriented him severely.  I now understand that and experience that more and more.  But others, without Dementia, do not understand.

Staying home, with someone who comes in, without professional Dementia Care training, in not a good idea as I see it.   Then, the Dementia patient is left at home at night with a family member who is overworked and feeling guilty, or what is worse, is the Dementia patient is left alone!!

My Sister had a life long friend and neighbor, with advanced Alzheimer's that the children left at home alone!  My Sister would go over everyday and make sure Mary took her medicines and that she ate something.   Not until Mary was so bad they were required by the Doctors to place her in facility, did they!   Mary never acclimated and only got worse.  Even with my Sister visiting Mary in the facility, feeding her, and looking after her, she died soon.  Her end days were not comfortable, secure, or pleasant.

So, my view, as a Dementia patient is place me in a professional dementia care facility and leave me there.  Visit me often, but do not disrupt my routine.  This will help me enjoy my end days.

Monday, June 20, 2016

Hallucinations are becoming frightening!

I got up last night to drain my bladder.  Not a new thing.  But sitting in the dimly lit bathroom, I saw a ball of snakes.  And then a larger one coming towards me.  I jumped off the toilet and turned on the lights!  That goodness, no snakes!  But, I was truly scared!!

Things are progressing.

Saturday, June 18, 2016

My thought process

I no longer write long missives because my thought process no longer works that way.  Instead, I think, talk, and write in short, stucco, thoughts.  Compact, almost disconnected, and somewhat without emotion.  Much of the time, my mind dwells in the past and I am mentally transformed to that time in my life.   When something causes me to write about it, be that the Navy Blog or this Blog, I quickly write on the topic because if I delay, I will loose the though!  Eve thinking about how to write my thoughts causes me to loose my initial thought process.

For instance, I was writing a reply to a Navy buddy about a Retired Master Chief I knew.  In typing his full first and middle name, I forgot his last name!!  Sometimes this disease is maddening.

A new issue that frightens me

Last evening my Wife and I were discussing the progression of my disease.  She and I agree on the recent developments and progressions.  Then,  a frightening thought came into my mind.  What if m Wife saw something getting worse and I did not recognize that change?

Trust me, that is a very disconcerting thought.  Why?  Because it means I am no longer connected to reality!   But, my wonderful Wife had eh perfect response.  She said:  When that happens, you will not be upset or frightened because you will not know it is happening.

Now that is a Wife that fully understands my disease and is in tune with how I am doing and how I will do.  I am a blessed man.

Friday, June 17, 2016

My mind lives in the past

We have a monthly get together of all the folks that live on our floor.  Everyone brings a dish and we spend an hour or so talking and exchanging stories.  Normally, the women are on one side of the room and the men on the other.  Some things never change!

I never talk about things happening today.  Not even the weather.  Instead, I talk about my career with the Navy or old cars, or places we have lived.  But never anything that is recent or news worthy.

Why?  Because I am most comfortable in my past.  I am not interested in the happenings of today.   They are not in my memory and I just do not care.

This is something my wife and I have noticed.  It is not new, but it is somewhat interesting and probably normal for people with Dementia.  I just thought I would report it.

Thursday, June 16, 2016

I like being with other Dementia patients!

Where I live, there is a woman, about my age, that has Frontal Lobe Dementia.  She still lives in Independent Living, like we do.  Her sister visits Her every week and we bump into each other and talk, mostly when Her sister is walking with Her.  I truly feel at ease when we talk.  I do not have to try to be normal!  She and I are on the same wave length and that is a comfortable feeling.  It is almost like living in the Chief's Mess, back on U.S. Navy Ships!   There, everyone spoke the same language, shared the same experiences, and were socially equal!

For me, a LBD patient, no matter who I am with, because of how my brain now works, I am not their equal, with the exception of other Dementia Patients in approximately the same stage of Dementia as I am.  That is why the new way of housing Dementia Patients, by their cognitive ability, is so perfect.  It groups the Patient in comfortable, social, groupings, that reduce disagreements and enhances their daily lives.  Unfortunately, where we live is not organized that way and only cares for Dementia Patients in Assisted Living or Skilled Care, without cognitive grouping.  Maybe that will change before I make the move.

Every time I see the Lady with Frontal Lobe Dementia, she asks me when we are going to sit down and discuss our diseases.  Hopefully we will bath remember that and make it happen soon.

Wednesday, June 15, 2016

My neurologist called me...

Two days ago, my Neurologist called us and told us he had received information that lead him to change my dosage of Nortriptolene to 25mg or less vice the 50 mg he had me on.  He did not tell me why, but he cared enough to call me at home and inform me of an issue in my treatment!  He has won my trust and admiration.

However, we do not have any Nortriptolene pills less than 50mg.  So, two days ago I quit taking Nortriptolene, COLD TURKEY!  

So far, no big deal.  I looked up on the INTERNET and I learned Nortriptolene says in your system for 6-21 days based on how long you took it and how much your dosage was.

I have wanted off this drug for a while, so I am probably not going to go back on it when we do get the new prescription.  I can be stubborn sometimes.  

Tuesday, June 14, 2016

When I realized that dreams and plans were unattainable

My Wife and I love to watch the many "Tiny House" shows on the cable channels.    Living "Small" appear;s to both of us and we decided to go look at some "Park Model" trailers in a beach town close to us.  It was a good idea to take a "Day Trip".

When we got there easily and we were impressed with the Park they were in and the new models.  Today's Park Model is 14 feet wide unlike the 8 foot wide predecessors.  And at 40 x 14 feet, they can be quite big and roomy, yet only 500 or so square feet of interior space.

We fell in love with one and spent some time with the sales agent pricing a model that would meet our desires.  We did not sign anything and spent the ride home trying to decide what to do.  I was having a very good day as far as the effects of LBD.  So, my thoughts ran towards leaving Azalea Trace and living in that Park Model Tiny House.   Even my Wife was becoming intrigued by this new adventure.

The next day we were busy at home and the events of that day took their toll on me.  I was agitated, mentally in a fog, and unstable in my gate.  My Wife and I were shocked back into our reality!   I am not going to get better, only worse, and living anywhere other than a Continuing Care Community is fantasy!

This is not the first time we looked at Park Models and I have wanted that life style for a very long time.  But, my Wife had reservations because of the rules that applied to these Parks in Virginia.  Mind you, the rules were not ever enforced!   But this was the first time she was almost ready to write a check.  But, reality got in the way of my dreams again.

There are many other dreams and plans that have now become permanently out of reach, like me owning a Corvette, a new pickup truck, or a cement home on a large piece of property.  All of these and some I can't remember are now forever unattainable.

LBD is much more than a debilitating, progressive, degenerative, neurological disease.  It is a killer of dreams, plans, and happiness.

Wednesday, June 8, 2016

My head vibrates when I relax!

I was a Navy Gunner's Mate.  I worked on Gun Mounts, Turrets, Missile Launchers, Rocket Launchers, and the ammunition each of them fired.  I know how the power drives work, intimately, that move those giant mechanisms to precise firing positions and track supersonic aircraft!  So, when my head started vibrating as I relax in bed, my mind went to the workings of the Receiver Regulator  used on the MK 42 Gun Mounts.  I started thinking about Offset Voltage used to keep synchos from zeroing up 180 degrees out.  Then my mind went to the Dither Transformer that keeps the Servo Valve from freezing up.  That took me back to the old MK 42 Receiver Regulators that used mechanical dither.

And I wondered, is LBD impacting these systems in my head?!  Does my head or my body even have a Dither Transformer?  How about Offset Voltage?  YesI know the sounds foolish and maybe like I need to move to a facility where I can get a higher level go care.  Like padded walls!  But, why does my head rock back and forth when I relax?  I looks to me like a 36 speed synchro that can synch up!  Or an Elevation Power Drive that has the Dither Transformer turned up too high!!

I think those little Lewy Body fellows are messing with my power drive!!