Saturday, December 15, 2018

Progression of my LBD

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!!


  1. Thank you for the sobering update. I definitely need to study the link and go through it to understand where you are headed to.
    PS You made me smile with your thing about the female reverend-as a woman who believes in 1 Cor 11 where the head covered thing comes from and believing 1 Tim 2 where the silence comes from. I hope you do get more people visiting you soon.

    1. Don, nice to see you writing again. Isn't it crazy the way we can be in such terrible shape, yet still be able to think and type out these types of messages. My wife and I have completed our move into a two bedroom courtyard house. It is very small, but we each have our own space, and we are very close via covered walkway to the big house where food is served, movies and most scheduled entertainment takes place, and people get together. It isn't a bed if roses, but my wife likes it better than the very small one bedroom apartment I lived in for the past 18 months. Some of the management and/or continuing care administrators are circling around like buzzards in anticipation of me crashing and burning, thus earning a transfer to assisted living or memory care. I am messing up so much, getting lost in the food place, forgetting things like appointments and events and such.

      One of my recent symptoms I guess is either a delusion or hallucination. When I am carrying something like a box, some force take over and tries to pull or push that box or item away from me. I reminds me of what happens when you try to put the wrong two sides of magnets together. The repel each other with some unseen force. That is exactly what I am feeling when the occurrences take place.

      I have thought all along that the two of us are just about at the same place in the crappy journey to death. I mean, it is hard to imagine any of the Lewy stuff getting any worse, because it has already destroyed my life and the person I used to be. And my wife can't handle what happens when she or something else rattles my cage. I don't handle things very well. Usually I start off miffed, and then quickly progress to total asshole.

      My short term memory has gotten so bad that I can't complete anything I have started to do. I just forget what I was doing and then go do something else, then same thing again, and so on and so on.

      I guess I lucky about the people here at the CCRC in the independent part. While they are mostly very rich and from the top of the heap, they seem to have become normal humans, even nice most of the time. But I can't socialize much, because Lewy seems to hope in and ruin everything. I am confused and lost and anxious and stressed pretty much all of the time now. This Lewy deal is much worse than the doctors and experts think it is or tell us about. In fact, I am to the point with doctors that I just don't want to see them, hear them, or even tolerate their place on earth. They can't do anything for me, and their view of the pain the Parkinson stuff drills me with every single day is appalling. They just flat out ignore anything I have to say when I report that the pain is getting so bad that I am almost ready to blow my brains out, which isn't such a bad idea anyway.

      Christmas means little or nothing to me anymore. I just try to survive each day, one day at a time. That is my life now, one day at a time and full of Lewy's crap.

      Take care my friend. Bill.

  2. Hello, I just came across your blog, and am sorry to read about your latest symptoms, as well as your other issues. I do hope that you are able to attend a nearby religious service for the holidays, this might perk you up a little bit. I read your post about your choking and aspirating issues that you published back in 2013, and thought that I would share my mother's experience with it, in the hopes that you may be able to find something useful.

    My mother is 74 years old and has vascular dementia, and she too experienced swallowing issues a few years after being diagnosed. In addition to choking and coughing severely after eating, she at times would also choke on her own saliva, even if she had not eaten recently. Her doctors diagnosed her with dysphagia, and did not expect her swallowing symptoms to get any better. Her swallowing issues continued even after she was placed on a pureed/liquid diet.

    One day I decided to floss my mom's teeth, as I remembered her doing this for me as a young child; I thought it would bring back some memories for her. I flossed her teeth thoroughly, and brushed her teeth after I finished flossing. Immediately after doing these, I noticed a very significant change for the better with her swallowing issues. Her coughing and choking were much less severe. She NO LONGER choked on her own saliva. She stated outright that she felt better.

    I continued to floss her teeth once a day, and her swallowing issues have gradually diminished; with regards to choking and coughing, she has gotten much better. She has since been able to resume eating solid foods, and drinking all liquids, without coughing and choking. She has not developed any other side complications or other issues. It has since been 3 months, and her coughing and choking have not come back.

    Here are some additional notes:

    1.) I used Reach brand un-flavored dental floss and regular Crest toothpaste.

    2.) The teeth should be brushed immediately after flossing. The flossing can be done at any time of the day (morning, noon, or night), as long as it is done once per day.

    3.) I did make sure to wash my hands just before flossing. While flossing, I also wore protective food prep nitrile gloves that were latex free, as I was not sure what kind of germs my sick mother might have in her mouth.

    4.) If possible, the tongue should also be brushed.

    At first, my mother did state that she felt nauseous if her back teeth were brushed, for some reason. I tried to get her to very lightly brush her back teeth anyway. I felt that it was important that she brush her entire mouth.

    If your hands are too large to fit inside of the patient's mouth, you may wish to consider hiring a private caregiver who has small hands. Do not consider using the dental floss picks that you stick inside the patient's mouth; these will not floss the teeth thoroughly at all. The teeth must be flossed along the gum line, in a gentle curving motion. The dental floss must NOT just be stuck straight up and down between the teeth.

    I hope that the above helps to at least ease any swallowing issues that you may be experiencing.