Tuesday, September 20, 2016

It is difficult to organize my thoughts!

I am having more and more difficulty organizing my thoughts.  Of course, this negatively impacts my ability to write this blog.  Never the less, I have issues that are important that I want to discuss.  Like this issue!

I have had a number of issues I wanted to post about, but either I cannot express them or I forget them while I am trying to compose the post.  I am even having issues writing this post because I have many different thoughts bouncing around in my mind, all conflicting with my thought process.  It seems the LBD has taken away my ability to select a single topic and express it.

In the beginning of my LBD journey, the Neurologist told me my Executive Function was broken.  If it was broken then, it is missing now!

This never ending collision of different topics, issues, storied, experiences, and dreams makes writing and communicating in general, a difficult proposition.

It also makes decision making all but impossible.  Think about this;  If I want to ass 2 plus 2 in my mind, before i come up with the answer, a thousands issues related to the number 2 in any form, the addition process, and anything  else that lives in my brain, collide with my thought process.  For instance, I has how many addresses with the number 2 in them, I had a 2 year extension in the Navy when I was on my first enlistment, how may people do I know who had two kids, what were their names, we used to have 2 cars, We had 2 car payments a couple of times, I used to have a 2 cylinder motorcycle, I wish I had another motorcycle, I don't even drive anymore!  See how this can impact a simple addition equation?!

It is like that in my mind, all the time!  It effects everything I do or think about.  This mental confusion and overload makes everything in my life more difficult and frustrating.  Not to mention, that is makes learning anything new or coming up with a logical conclusion or decision all but impossible.

LBD is no longer interesting, it is frightening.

Thursday, September 15, 2016

I have a cold, or something!

I have a rather serious, chest congestion, cold, or an allergy issue, or the flu, or Zika, since i have been bitten by many Florida mosquitos.  Whatever it is, I am congested, have post nasal drip, lots of flame that I am choking on.  In a nutshell, I am miserable.

I brig this up, because breathing is important and choking is akin to aspiration.  And aspiration is the number one cause of death for LBD patients.   So, I am sensitive to this issue.

Now, do not get me wrong, death does not cause me any fear of consternation.  I am ready to go home and I welcome the change of address!!  

But, the truth of the matter is, being in the late third quarter of a four quarter disease, death is always on my mind and always a constant possibility.

Just the same, I try to take care of myself as does my Wife.  But chest congestion always results in coughing until I pass out!   And that is true misery.  Happily, my bed is adjustable so I can raise my head to help with the mucous.   And hot tea also cuts the mucous, so I am drinking plenty of hot tea.  

I have not had this in awhile.  Truthfully, I do not remember the last time.    But, I do know it is going to be a long night!

Tuesday, September 6, 2016

!! FLASH !! The spray to kill Zika mosquitos is NEUROTOXIC!!

It is 1:38 in the morning and I cannot sleep.  So, I am up surfing the WEB and I found an article on the spraying to kill the Zika mosquitos.  And low and behold, after a few research attempts, I discover that the chemical they are spraying is NALED.

NALED is a organophosphate chemical that is very toxic and can cause death.  But, it is also Neurotoxic and has the same side effects as Trichressylphosphate.  TCP is the chemical that caused my Lewy Body Dementia!  And the OSHA Fact Sheets say NALED causes memory loss, confusion, depression and loss of coordination, among other neurological issues.  Oh, and it kills bees, birds, and other wildlife.  Oh, and it can be fatal if inhaled, swallowed, or absorbed in the skin.  And, clothing heavily exposed to NALED must be destroyed.  And, clothing exposed to NALED must be washed separately.

NALED is a Organophosphate and the word "Phosphate" is the key.  Just like the chemical in Mil-F-17111, the hydraulic fluid me, and thousands of Gunner's Mates breathed in, absorbed through our skin, and swallowed, for decades.

If I were you, I would do some research on this one.  Do not take my word for it!!  But, the information is out there, at least for the moment.

Thursday, September 1, 2016

The FIRST meeting!

Thanks to my Wife's tenacious work, and unrelenting push, we had our FIRST meeting of the Dementia Patients Support Group.  There were three of us and a couple of nervous caregivers at the kick off meeting.  It was very productive and I was very encouraged that the Dementia Patients are so open about this personal issues.  We now have reserves a private room to meet in and plan to meet every Thursday.  My Wife is working on getting a Facilitator from Covenant Care or the Alzheimer's Association to help with this group.  Today, I served as the facilitator and that is not how I would like this to go in the future.  But for now, I am very happy to fill in this position just because I am so dedicated to building this much needed support group.

I was very encouraged at how fast we began to bond as a group.  If you have had any group dynamics training, you know there are four stages to group development;  Form, Storm, Norm, Perform.  Well, we quickly jumped to Norm today.  We were open about what we expected from the group and how each of us wanted the group to meet our needs.  From those expectations, we found a private room, set up future meeting dates and times, and even started to build an expectation of 24/7 group help.

I am sure future meetings will explore more personal issues and needs.  But today was a wonderful start.  We have also learned that ACTS is planning some Dementia Care expansions for the near future that will help the generation of Dementia Patients after us.  And maybe even some of us.  This was exciting news and I am encouraged to hear of these plans.

Caring for Dementia Patients and their loved ones is an evolving process because of the nature of the disease and the new drugs and treatments available.  Also, dementia is being discovered in individuals earlier in the disease, enabling earlier treatment.  More is being learned in how to house, live with, and encourage the dementia patient.

But, there is still the difficulties of changing personalities, inappropriate actions, and the mental loss of our loved one.  So, treatment and care will continue to change and improve foe the foreseeable future.  I remember, when my Father in Law had Alzheimers in the late 1980's.  To deal with his wandering, they tied him in a chair, all day!  Now, we have leg bracelets that set off an alarm if the patient wanders out of the safe area!  This are better!!  And they will continue to get better until there is a cure!!

Again, thanks to the folks that made the first meeting.  We welcome others and expect some other members next week.   Our group will grow and our ability to help each other will expand.  We share a common enemy, Dementia.  And while we cannot defeat it, we can help each other deal with the effects of Dementia.  That is our goal.  More later.


Tuesday, August 30, 2016

Dull, disconnected, and lost

Many people ask me how I am doing.  My standard answer is; "I am progressing".  And that is a true answer, but not totally accurate.  I have written recently that I have entered a new, phase of LBD.  One more difficult than the past.  This is the REAL LBD!  The past has been the warm up!

Mentally, I now feel completely disconnected from the world around me.  Everything seems distant and no connected to me.  I have little interest in most things.  Things seem dull to me!  Not "Dull" like boring, but dull, to my senses!  No excitement or enjoyment.  Everything is a burden to do.  I have lost my zest for life!

There is nothing I want to do and few things I will do.  My Wife has me participating in some exercise classes here at Azalea and they are good.  But if she did not take me, I WOULD NOT go!  Yes, I understand they are good for me, but what's the purpose?  I guess that is a reflection of the depression I am dealing with.

I now know everything I deal with before in this journey was "Kid's Play"!  It served to soften me up, like a boxer uses body punches to weaken the opponent.  Now, the real punches come when I am at my weakest and I cannot endure them.

Our Pastor who is a wonderful Pastor, Teacher, and friend, sat down beside us before Church last Sunday and asked me about the new issues I was experiencing and I could not remember any of them!  Linda had to fill him in!!  I guess that is a good part of LBD, I forget the things that bother me.

Another issue.  We were walking down a hallway for exercise last evening and I saw a cat, that frightened me!  I was physically and emotional scared!  It turned out to be s stuffed animal, but it frightened me, twice!!  This is getting ridiculous.

So, LBD is now winning!  And try as I might, I know I am not going to win or break even!  And I know the fight from now on will be a difficult, loosing battle.  I hope it is a short one!




Friday, August 26, 2016

Why should I do it?!

My Wife and I would like Azalea Trace to start a Dementia Patients Support Group.  They have a Caregivers Support Group facilitated by Covenant Care that covers all caregivers.  But, I recommended to Management a Support Group for those with Dementia to help us share experiences of the journey that will help each other deal with early and mid level Dementia.  I also recommended tours of Assisted Living and Skilled Care including meals in those facilities, and tours of the rooms and even day stays in these areas to get us accustomed to the facilities so that when we HAVE to move, it is not a shock to us!

A recent article in "Neurology Now" discusses Alzheimer's Cafe" that provide a place for Alzheimer's Patients to meet, without the worry of trying to be "Normal".  My idea of the "Support Group" is similar.  But, management has not moves on this and my Wife has pushed me to start the group on our own.   I have two Dementia patients ready to meet, but we have received some PUSH BACK from the established resident representative.

My question is, why do I have to organize this group?  If Azalea Trace's organizational goal is to be the BEST, then I would think they would have already read the article I quoted and They would be setting this group up!  Not to mention that my Wife and I told the Executive Director, Nursing Director, and Staff Chaplain about my idea, over three months ago, with NO action!   They all said it was a good idea, but no one took action.

So, I am dragging my feet because I do not want the pressure of setting this up and getting frowned at by some "Normal" residents.  And, I do not want to be in charge of this group.  I want the benefit and not the lead!  I am the patient here!!  Not the Doctor, Psychologist, or caregiver.  I need the help!!  So, here I am.  Without a Support Group and under the gun!!

Help!!


Tuesday, August 23, 2016

Today, someone actually cared!

Here at Azalea Trace, we have many opportunities to volunteer.  For instance, when the Staff Chaplain needs someone to fill in for a Service or Bible Study, I help out.   Well, our annual fun raising event for the fund that helps those who outlive they savings takes place in October.  One of the Committee members had me in mind for an assignment, but, that individual knew I had LBD.  Instead of asking me to volunteer, that very thoughtful individual called my Wife and asked Her if I would be overwhelmed by the assignment they had in mind for me!

Someone actually took into consideration my condition!  This is the first time this has happened with the exception of my Wife, our best friends Jerry and Marcia, and my Son.  I am sitting here, many hours after that telephone call to my Wife, surprised and happy that someone finally considered my disease.  I feel like I have been accepted!  Someone actually cares that I have Lewy Body Dementia!!  I will say it again, this is the first time this has happened!!

My Wife and I have decided to do the assignment together, to lesson the impact on me while still permitting us to serve this very important event.  

I can actually tell you I am happy!