Thursday, January 3, 2019

On another point....

When I was having more severe anger issues, before Neudexta, I would spend my nights building in my mind, my concrete house on 10 acres with all sorts of defensive emplacements.  I would fight battles with those who would want to invade my compound.  And I would defeat the aggressors before I could go to sleep.  I have always wanted, longed, dreamed, planned to live a survivalist life.  Of course, it never happened.  But, before Neudexta, and it's calming effect on me, I still tried to cling to that fantasy.  Now I realize that dream is lost.   It is difficult to recognize a dream is lost.  But it is comforting to understand that I now recognize my limitations, caused by LBD.  Reality is harsh, but necessary.

The New DRUG for an OLD problem, works! So far.

Well, it has been 9 days since I started Neudexta and I am now on two pills a day.  I can report that I am much less agitated and angry, especially at night!  I did notice at the end of the one pill a day work up that it helped the most at night, which is when I took the pill.  But now, as of yesterday, I am o n two pills a day, morning and night and the impact seems to last all day.  I am much calmer.  Even my Wife has noticed this and commented on it in our Dementia Support Group her at Azalea Trace.  I have not noticed  ANY side effects.

Now, 9 days is not a conclusive trial, but still, I am very happy with how I feel.  I would not say I feel normal, but I am more calm and have much less violent, angry thoughts and outbursts.  I am having an easier time going to sleep also.

The lessening of the agitation makes my entire body relax.  I will keep you updated as we progress in this latest experiment!

Wednesday, December 26, 2018

A NEW Drug for an OLD problem

My Neurologist has tried for a while to get me to try Nudexta for my agitation and anger issues.  I have resisted her numerous attempts.  So, this visit, she took a different approach.  She told me to check on line for the research on Nudexta helping Lewy Body Dementia patients with anger and agitation.  That peaked my interest since these studies were never mentioned to me before and I was not interested in taking a drug to help with a disease. Did not have.  I did the research and I was surprised to find Nudexta did help in most cases, with LBD anger and agitation issues.  So, I agreed to try it.

Today is my first day on the drug.  You start out a half doses for a week and then go to the full dose, as we do with so many of the drugs we take.  So far, no side effects!!  And, I seem to be less angry and agitated.  Now, that may be the placebo effect so I am reserving judgment until I have been on it a month or so.  But right now, I feel very good, and I have not said that in a long time.

So, we will wait and see.  I will keep you informed.

Saturday, December 15, 2018

Progression of my LBD

http://www.lewybodydementia.ca/lewy-body-dementia-phases-and-stages/

I sure hope you can attach to the site shown above.  It is a tremendous review of the symptoms that signify the stages of Lewy Body Dementia.  According to this information, I am completely in Phase 3 and showing a number of significant symptoms of Stage 4.  Not really a surprise but sobering just the same.  I have a planned appointment with our Neurologist's Office this week and it will be interesting since many of these issues have become much more bothersome and serious.

One of the issues I experience is mental trips into various situations or events.  In other words, day dreaming that seems Very REAL to me!  Some of these day dreams are related to my long held desire to build a concrete home on 10 or more acres, and live the survivalist life.  My Wife never shared that dream and it never materialized.  But, I spend hours, especially at night alone in the Cabin, building and maintaining that beautiful 800 Square Foot Survival Bunker! 

Other day dreams relate to arguments or outright fights with people I either know or have never met.  Some of them are very violent, others are just debates of points of interest.  Most relate either to me living as a survivalist or relate directly to my Navy career.  Some nights, I just want to sit in my Cabin and SCREAM as loud as I can and beat the walls down or just cry because I am so filled with anger and depression! Most nights, I toss and turn, living my day dreams, until I finally fall asleep.  And sometimes, I wake up during the night, still living those day dreams!!

Another issue I am having serious problems dealing with is being isolated and alone.  No one, and I mean NO ONE comes to visit me.  It has been Thanksgiving since I have seen my son and he lives 20 minutes away!!  I have nothing in common with the people I live with.  They are rich, snobbish, self-centered liberals that truly believe, no, the are totally convinced their solid waste does not stink!  Being a Retired Enlisted Navy Master Chief does not seem to impress them.  I guess they do not know only 1% of the enlisted personnel can be in Pay grade E-9!!  It is easier to make Admiral in the Navy that it is to make Master Chief!!  And even though I am an Ordained Pastor, the other Pastor's here do not associate with me because I am a "Lay" Pastor.  Of course, I have done Services since I moved in here and none of the Seminary grads of the Liturgical churches have not.  But, they seem to look down on me with disdain.  I even had a female reverend ( small "r" on purpose) tell me I was not a Pastor and that she was ordained by her Seminary and that Churches do not Ordain Pastors.  She needs to read the Bible!  First, there are NO female reverends.  Paul said, women are not to have a position of authority over men in the Church.  Oh yes, and they were to have their heads covered and their mouths SHUT!!  This female reverend does not practice that either.

Remember what my GP said?  I am depressed!!  I am truly finding it difficult to keep it together.  I get very agitated at the smallest things.  Thank God that I have the Cabin to hide in.  This was a life saving move for me.   I need to stay in the Cabin more and travel through the rest of the community less, for my own good.  Or, someone else is going to get the same treatment the Fedex driver got!

I have not unloaded in print in a while and I thought you should know where I was progressing, or digressing to.  And, like I tell the folks in the Dementia Support Group, I am normal!!  Normal for the stage of LBD I am in.

Merry Christmas!!


Wednesday, December 5, 2018

Help with the Holidays!

This is more and informative post that certainly relates to me and most with Dementia of any origin.  On the Alzheimer's Association Web Site, (ALZ.ORG) there are two mew articles.  One about traveling with a Dementia patient and the other about how to deal with the Holidays and your Dementia patient.  Both are brief, bright, and relevant.  They are full of information that my Wife and I have had to learn on our own.  Now, it is available to you thanks to Alz.Org.    Please check this out!!

Saturday, November 24, 2018

My Doctor says I’m depressed!

My GP did one of those leading question quizzes and deduced that I am severely depressed!  No Shit!!  My Wife wants to know why?  Well, let’s see;  I went from a self-sufficient, self-assured, confident, WARRIOR, who lead men into battle, to a person who can’t even get a haircut without an escort!!

The few things I want to do, I never get to do.  And trust me, there are few things I want to do anymore.   I get angry over trivial things, continually feel like kicking the shit out of most people I see, and I have no one who respects me or understands what I did for 40 years to talk too!

Yes I am depressed and I can only see it getting worse.  The GP wants me to go to a Psychiatrist.  For what?  That Scab Lifter will only want me to take more pills!  NO!!  Not going to happen.

I try very hard to be as calm as I can.  If I am out of control and I know it, I go to “The Cabin” and hide.  That is as good as it can be.

The holidays always are hard for me and this year may present even more challenges.  My Wife dose her very best to mitigate stressors for me but some things are out of her control.


Friday, November 16, 2018

More progress of my LBD and an update on my Wife

First my Wife.  Her blood work did mot show any abnormalities that would bring on dementia symptoms.  And Her MRI looks fairly normal although some age related small strokes were noted.  So, we wait for the Cognitive Skills testing in February.  She is still having math difficulties along with some instability issues and vision changes.  All things that can be related to the "Silent Strokes" found in her MRI.  But, we have no share diagnosis now.  So, we wait.

In my case, I am definitely getting worse.   I have far more issues with my emotions and anger.   I also have problems finding the dog, Zeus, at night in my Cabin.  Remember, he does not stay nights with me!  But, I hear his whine and wonder where he is.   I feel more confused and disoriented.  Speech is becoming more labored for me.

On the good side, my Wife decided about 4 months ago to loose weight.  She has cut her caloric intake significantly and has US walking 3-5 miles a day, seven days a week.  She has lost almost 40 pounds and I have lost NONE!  Of course, I do not watch my caloric intake.

Life with any type of Dementia is challenging and requires flexibility, determination, and a sense of humor!!