Friday, October 30, 2015

Hallucinations

I have had hallucinations from early on in my journey with LBD.  They have come and gone and came again.  I have always had all three types of hallucinations; Visual, Auditory, and Touch or Sensory Hallucinations.

For a while, they were all gone.  But, recently that have returned.  I have been experiencing visual hallucinations of small animals.  But, in the last few days, I have been experiencing Touch hallucinations.  The occur when I go to bed.  The dogs are in the bed, laying down, quiet.  I am just settling down and then I feel the bed move as if someone has sat on the edge of the bed.  Sometimes, it is as if someone is walking over the bed.

These pass fairly quickly, but they are disturbing.  Because the room is completely dark, I am the only human in the room, the dogs are asleep, and the bed moves!!

Some wonder why Robin Williams committed suicide over his hallucinations.  He had other demons to deal with because if past drug and alcohol abuse and the Lewy Body Dementia Hallucinations must have been overwhelming to him.  So, I CAN understand.

This is a signature feature of LBD and I have had to deal with it from the beginning.  Attacking Christmas trees, horses, crashing planes, cars, boats, people walking across the freeway, my wife calling me, beds moving, the feeling of someone touching me from behind, and ones I cannot remember.  This is becoming a problem for me.

Tuesday, October 27, 2015

Others with Lewy Body Dementia

My Wife is involved with Bible Study Fellowship and has met a lady whose Husband also has LBD!  This is monumental to me and as reported, to them also.  To actually, personally, know someone with LBD, that we can compare our journey with, will help all of us on this journey.

From what I have learned sofa, he is a little farther down the road than I am and has many of the same issues I have.  Just think, now, I have evidence that these symptoms are actually related to my LBD!!

Compare this to taking a car to a mechanic, trying to replicate the noise, symptom, vibration, with NO mechanical knowledge on your part and the mechanic is deaf and blind!!  That has been our journey up to now!!

So, it is my hope we can get together, learn from each other, and help each other on this journey!  I am truly enthusiastic about this developement.

Monday, October 26, 2015

Lack of control of ANGER!

It is interesting how LBD impacts my ability to control my anger.  I have aways had a "Healthy" anger.  I have always been able to "Spin Up" at a minutes notice.  And when I was "Spun Up" my anger was directed at the individual or individuals that caused me to be angry.  That all seems pretty normal.

Now, my anger seems to be directed within.  I tend to hold my anger in and do not scream, yell, strike out, or use profanity.  I do not threaten to harm anyone or take any aggressive actions.  Instead, all of this is directed inside.  Thus, there is no relief of the pressure and stress caused by my anger.  There is never any relief.

Some of this may be caused by a self defense mechanism in that I try to maintain a calm and cool exterior to prevent me from loosing my freedom.  I never worried about that before.  Now, they have something to use against me, my disease.

Some may also be caused by my total discuss with America, our so called, leaders, and the direction of our broken, defeated, country.

If I have my wish, I would live in a one room, cement cabin, on 20 acres, in the uninhabited part of South Dakota, alone.  People only anger and disappoint me.

Thank goodness I can hide in my bed, and I think I will.

Sunday, October 25, 2015

A Cancer Drug that might help Lewy Body Dementia patients!

A very good friend of mine, Jon Harner, sent me an article from NPR, dated October, 17, 2015, written by Jon Hamilton, titled; "Can A Cancer Drug Reverse Parkinson's Disease and Dementia?"

The article talks about a small study group of 12 patients given small doses of a cancer drug.  Many of the group had significant improvement in their movement and memory issues.  The study lasted 6 months and then was stopped.

After the stop of the study, that patients that saw improvement began to see their issues return.

I realize this is a very small, short, study.  But, it appears to offer hope.  And that is exactly what we need.

I invite you to read this study and pass it on to your neurologists and Family Doctors.

Thursday, October 22, 2015

Troubles reading!

For a while, I have had a progressively worsening issue reading.  It showed up early in my journey as an on again, off again, issue and is now with me all the time.  I simply cannot maintain my attention reading anything over a few words.  And, I miss letters in words or swap them.  For instance, a Friend sent me a story about a Cancer Drug helping with Lewy Body Dementia.  But, I saw the title as a Cancer DOG helping with LBD!!  I though;  How can a DOG help me?  I already have two and while they are good companions, they cause me more issues than help!

But, it was a great illustration of how LBD impacts every part of my life.  And that impact is increasing, quickly.   I told my wife about the article and she wanted me to write about it to preserve it for future doctor's appointments.

I have also noticed my articles are getting shorter.  That is also related to this issue with reading.  My typing puts "Spell Check" to it's extreme level!

So, my friends, keep this articles about "Cancer Dogs" coming.  They help me greatly.

Wednesday, October 21, 2015

Physical Therapy II

We have been going to Physical Therapy (PT) for over a week, maybe two, I am not really sure.  My legs still hurt in the evenings and I am still very stiff.  Since I have fallen twice in the past week, the Therapist is paying particular attention to my balance issues.

Today, she recommended I uses a walker when my left leg feels weak. So, she has obviously isolated my falls to a weakness in my left leg.  It makes sense.  I have noticed a weakness in that leg myself.

Right now, I am sitting in my chair with my legs up, trying to rest after my PT session.  Stretching, crazy moves, and some leg presses have me tired.

Another issue surfaced to the Therapist that I have known for a while. Stairs are not my friend!  Especially going down stairs!  She had me walking up and down stairs and I told her about my issues going down.  She looked like a light just went on!!

I believe the is all connected the Parkinson's side of my Lewy Body Dementia.  And, so it seems there is evidence that portion of the disease is increasing also.  No big deal, just another challenge to overcome.

I have another PT session Friday.  I wonder what we will discover then.  More later.

Sunday, October 18, 2015

One out of three senior citizens fall every year!

I fell twice in the last five days!   That means, six senior citizens don't have to worry about falling the rest of this year!  No thanks necessary, I am glad to help.

The first fall came on an escalator in a department store.  I was getting on the down escalator, very carefully and holding on to the hand rail.  My left leg collapsed and I fell to my knee.  Tonight, playing Billiards, I made a shot and started to turn to walk around the table and my left ankle collapsed and I fell to my knee again.  This time I grabbed the pool table to keep from falling completely.

These falls are related to my LBD and things are speeding up as far as the progression of this disease.   Falling has become a major concern and I will be sure to discuss this at Therapy tomorrow.

Since falling is a prime issue for moving an individual to Assisted Living, the recent rash of falls concerns me.  Not that I don't like our Assisted Living accommodations.  It is just that it signals a major downgrade in my condition.

Oh well, we will see what we will see.  More later.

Saturday, October 17, 2015

What do I look forward too?

The answer to that question is....nothing.

When we were young, the next excitement was just around the corner. Getting our driver's license, the Prom, enlisting, getting engaged, a vacation, buying a home, getting a boat, or a corvette, all very exciting life experiences.  But, what do I look forward too now.

I used to dream about the next adventure, not now.   When I close my eyes, I see nothing.  When I get up in the morning, there is no excitement, no hopes for a good day, and no promise of a brighter tomorrow.

The things I used to like to do either I cannot do or do not interest me anymore.  Heck, I don't even drive anymore and I LOVED to drive an automobile, pick up truck, big truck, motorcycle, anything!

Yes, I have some enjoyable experiences.  I enjoy billiards on Wednesday and Sunday evening.  I enjoy the opportunities God gives me to preach His Word.  But they come seldom.

I have learned, or better yet, observed, that Lewy Body Dementia is a life sentence in a prison made up of the confines of my mind.  And those walls that confine me are closing in!!  Slowly at first thanks to Named and Razadyne, but now increasing in speed.  Close and closer they close in, restricting my view of life itself.


Thursday, October 15, 2015

My mind in in rapid repeat mode!

I said recently I washing difficulty with rational thought.  One thing I did not write about is the thought that run through mu mind time and time and time again, everyday, day in and day out!!

For instance, I cannot tell you home many times a day, the thought; "I really need to retire.  I just cannot take this anymore!".  Or: "I need to put my Papers in."  I also repeatedly think about Navy issues like I was still on active duty.

Now, I have been retired from Active Duty Navy since 1989!  Why would I think about retiring from the Navy, time ad time again, everyday?   There are other repeated thought themes that I cannot remember as I write this post.  Imagine that.

It seems my brain is functioning less efficiently recently.  I believe the disease is progressing.

Tuesday, October 13, 2015

The onset of an irrational mind

Up to now, I have been able to "rationalize" thoughts and visions that I have had that really do not make any sense.  For instance, I saw a white horse with brown patches grazing in our back yard.  I rationalized it because I did not own a horse and our backyard was too small to support a horse.  Hey, it worked and the horse vision did not bother me.

The man walking across Interstate 10 in traffic was not as easy.   was sure he was real!!

Some of my thoughts have been the same, unrealistic and therefore I can explain or "rationalize" them away.  But now, I am beginning to believe my thoughts even though there is little or no evidence for them.   I am very reticent to answer email questions from blog readers.  Since I now fear they are gathering evidence against me.  I stay in our apartment most of the time, nesting, for security.

This is troubling for me and my Wife.  We discussed this last night since I wanted her to know I was beginning a new phase of issues.  She was visibly upset!  I apologized, but, the truth is the truth and I always want he rot know what I am experiencing.

You might be able to imagine where this issue may lead.  So, we are guarding against those issues and Praying that God will carry us through this storm.  Linda know what I am going through.  I have hid nothing.  But, LBD is becoming a mean, destructive, terrible life companion.  And I fear the worst is yet to come.

Saturday, October 10, 2015

An open post about my nights and life with LBD

It has been a tough day.  And tonight is even more difficult.  My life and how I live it has changes SO much in the last few months that I do not recognize myself.  It is true.  I looking the mirror and don't recognize who is looking back.

My mobility is becoming diminished.  We were shopping a day or so ago and I almost fell down an escalator!  Now, I was VERY careful getting on, held the handrail, and watched everything I did, but, my left arm gave way and collapsed and down I went!   Not far, but I went down on one knee and almost went over.

I have written before about how LBD has taken things from my life.  Physical things, mental things, that were important parts of my life, are now gone.   Or if not gone, so degraded they are no fun anymore.

Last night, we went to a Fund Raising Dinner here at Azalea Trace.  It was a wonderful evening with great entertainment.   I spent some time talking to a gentleman that I knew by sight and that had just moved into Assisted Living.  I did not know he had Dementia until he told me.  He and I briefly discussed our issues but I really am going to try to visit him for a longer, more in-depth, discussion this week. I am more comfortable talking to Dementia patients than other people.

This post obviously has taken a couple of days.  I was so overwhelmed last night that I closed my laptop and went to bed!  But the intermission has reinforced my views of life with LBD.   Things I did, and took for granted, I can no longer do!  I am only 64 and I never thought these things would be lost to me at this young age.

I am going to post this, even though it is not complete or even cohesive.  But, it illustrates how disorganized my thought process is.  When I started writing this, I was upset, and had this article in my mind ready to write.  That went out the window somewhere.  It also illustrates my frustration and mental anguish over the losses related to LBD.  President Reagan said Alzheimer's was the Long Good By.  It is a Long Good By to those you love as well as to yourself and who you used to be.


Tuesday, October 6, 2015

My Wife is already a Widow!

I was sitting here thinking, as I often do.  No TV, no music, just silence.  I was reflecting on my Wife's response to my disease.  She has it difficult considering she is living with a ticking time bomb.  Unlike having a spouse that, while you understand they will die at some time, she is dealing with the realization that she is watching me die right now!

This topic came into my mind because the Chaplain here at Azalea is starting a Caregivers Support Group and my Wife was considering if she wanted to attend or not.  

When I was on active duty, as a deployment approached, she became more and more distant with me.  Her view was, the sooner you go, the sooner you will be home.  I found that quite frustrating as a young husband.  Now, I understand it a little more.  And I truly do understand her mental status as a widow, already.

I also find it interesting that she understands my attitude, or "Fight" response may extend my life.  Last night she told me not to let my disease progress too fast.  Of course, I have little or no impact on how fast this disease will progress.  I am just along for the ride at this time. And truthfully, I have little fight left in me.  I would just as soon have this over with!

Unlike her, I see this unending, ever increasing, fight to be exhausting, demoralizing, and tedious.  I am NOT the person I once was.  I have few of the capabilities that I once had and I find that fact frustrating.   Every single part of my life has been negatively impacted by Lewy Body Dementia.

But, I just thought I would share m observation with you.  That is why I write this blog.

Lunch with my Pastor

My Pastor came over for lunch today.  I enjoy His company and value His input so I was anxious to sit down with him and discuss things.  He wanted to get an update on the progression of my LBD.  That is why I am writing this post.

First of all, He asked for the update which shocked me and made me happy at the same time.  It is hard to explain this disease in one word answers.  So a discussion over dinner make the discussion easier.

Second, He actually wanted to understand how I was doing.  Maybe He reads this blog.   He did ask me an interesting question.  I was explaining to him that the recent changes in the diseases impact on me has finally put me in the place of not finding LBD interesting!  Up to the recent changes, I have looked at this disease as an inconvenience or an issue I could deal with.  Now, I realize I can no longer compensate for the effects of the disease.  It was an eye opener to say the least.  His reply was a question:  Was I angry with God?  My solid reply was NO!  God has been very gracious with me through out this entire journey.  God made it so I got an early diagnosis.  God sent me to a very aggressive Neurologist.  God has made the progression of this disease slow up to now.   God has taken good care of me and I believe He will until he takes me home.

Third, and for those of you who read this, the most interesting revelation of the conversations was the fact that I cannot describe what is happening in one, concise, description.  I found myself looking for the things that were causing me issues!  I had actually forgotten many of the things that ARE wrong.  I would remember things as we discussed other issues not related to my disease and would then report them.  I find it strange that I cannot list everything that is wrong in one, concise list!!  But, it makes sense that if my memory is broke, I would not be able to recall everything.  But, again, that fact was a shock to me!!  It truly was the first time I ever sat down and tried to have a conversation about my disease with someone who actually cared.

So, be careful what you ask for!  You may get it and then have troubles dealing with your request.  I wanted someone to ask me about my journey with LBD and when that caring person came forward, I was at a loss for words.

This was a revealing day!

Monday, October 5, 2015

The first day of Physical Therapy

We decided to ask my Neurologist for Physical Therapy (PT).  He sent a prescription to the PT group here at Azalea Trace and today was my first day.  Wow!!  Am I impressed!  The PT therapist did a one hour evaluation of my rigidity in my legs.  She put me through my paces.

But what impressed me the most was that she actually knew what Lewy Body Dementia was including all of the issues related to the disease.  Then, she engaged me in a conversation to find out how the disease was impacting ME!!  Double WOW!!!

I am very encouraged and I am looking forward to my next PT session on Wednesday.  I do not know if the PT will help or not, but the attitude of the PT staff has impressed me beyond words.

This is one of the main reasons we decided to move to a Continuing Care Retirement Community.  All the help we need is right here under one roof!  More later,