Sunday, September 27, 2015

A study in Lewy Body Dementia

I received a comment from a Medical Student in the United Kingdom stating that she used blog to help her understand Dementia from the first person.

My Wife, who spends many thought-filled hours trying to dissect my disease, encouraged me to address some of my more pronounced hallucinations and relate them to what she believes may be their basis. She also co-authored this post.

We know pronounced hallucinations are one of the main symptoms of LBD.  So, they are important in understanding this disease and how it impacts the patient.

For instance, I have written about my hallucinations of me being trapped by fully decorated and illuminated Christmas trees.  Each time, these Christmas trees surround me and prevent me from getting out of the room.  They actually impede me from going anywhere!

Now, let me unpack this in my Wife's analogy.  Until two years ago, Christmas was a very unhappy time for me.  I dreaded the Holiday!  So, Christmas trees represent all that is wrong in my life.   Therefore, I am being trapped by the things I hated from my past.  She also draws a correlation between this hallucination and a drop in my cognitive abilities.  I agree with that.

Or, the man walking across Interstate 10!   I was driving in moderate traffic on clear sunny day.  About 100 yards in front of me was a bridge that crossed the freeway.  I saw a man, as real as any man I ever saw, walking across the freeway, from one bridged abutment to the other.  When we got even with the bridge abutment I looked t my left to see where the man was.  My wife asked me what I was looking for and I told her;  The man walking across the road!  She told me there was no man.  Earlier in the week a man had been walking across a city street.  Did my mind bring that forward and place the man on the freeway this time?  Does Lewy Body dementia bring events from the past to the present - out of the context of current reality - but definite events that the mind processed prior.

Then, when we were back in Virginia, we went canoeing on Lake Wright.  Riding in the car, I saw a bright red sports car.  I do not now remember what kind it was, but it caught my eye and I was discussing it's virtues.  Then, when we were on the lake, in the canoe, I was startled by a red power boat close to us!  Power boats are not permitted on Lake Wright, so it was not there.  Again did my mind bring an interesting event from the past to the current reality - not really an hallucination but a past experience the "Lewy Body mind" puts in the present & doesn't realize it doesn't belong there.

Third is the plane crash.  One day, with my wife driving on a quiet residential street, I saw, clearly, a DC-3 flop over on it's back, presenting that unmistakable DC-3 belly and wide wings, and crash, nose down, not a mile in front of us!!  Now, I actually saw an A-6 with 5 external fuel tanks flop over and crash in front of me near NAS Oceana when I was the Command Master Chief at VA-55.   So, again, this hallucination may have been related to and actual life happening that the "Lewy Body mind" places in the present.

And finally, we were in an Eye Glass store.  There was a dirty, unkempt, homeless man hassling the receptionist.  She handled it well and the situation was defused.  Then, a few weeks later, we were back in the store to pick up our glasses and I was staring at a chair, where I distinctly saw that man sitting and I felt he was going to cause trouble.    I told my wife I was going to intercede and solve this problem.  She informed me no one was in that chair!  She believes my issue with the unresolved actions of this man, weeks before manifested the hallucination on this day.

My Wife wonders if LBD patients bring past memories into the present mind function and live them out.  And, I hope you remember me writing about being in our home, but in my mind, I was on a AEGIS Class Cruiser, yelling at a group of young Gunner's Mates for gun decking PMS and not doing Pre-Fires by the PMS Card.  I could see, smell, feel the ship.  I was actually walking through ship spaces!!!  In my mind, I was on that ship at that time and those people were real and I was talking out loud! Not in my mind.  A telephone call brought me out of that hallucination.

Do we short cycle our memories and bring them forward?  If our memory can be represented by a sine-wave, is that sine-wave shorter and more compressed in LBD patients?  Is this why past memories and reality get mixed together in the LBD patient?  And, why do Alzheimer's patients stay in their mental comfort zone when LBD patients move in and out.  All these questions need research.  Does the Alzheimer's mind have a clear break in memories - a chasm the mind can't go forward or skip over - so the patient is stuck in the past and can't live in the current or move into the future?  Does the Lewy Body mind bunch up memories and mixes the past with the current and can't sort out the difference.  Do Lewy Body patients stay in current reality longer because the Alzheimer's "chasm" isn't a part of Lewy body dementia?

Does the Lewy Body brain lose the rhythm of normal brain waves, distorting the memories kept in those waves?  Does it run too fast & bump or blend memories together - like a heart that has an irregular heart beat?  Does the Lewy Body brain have a shorter span of brain waves or a faster flow - what causes the out of sequence memories that appear to be hallucinations?

Conversely does the Lewy Body brain bring unusual, or unresolved events from the past back into the present  to try to resolve or make sense of something the brain is dwelling on?

Hallucinations are a major part of LBD.  They can be frightening, as in my Christmas Tree Hallucinations.  Or, they can cause you to change the way you live your life, like my hallucinations of the man crossing the freeway caused me to stop driving.   But, the fact is, hallucinations are part of LBD and the are a big part of my life.  They can be harbingers of declines in cognitive ability or reflections of my past.  I truly do not understand them and only write this at the bequest of my Wife, who is deeply involved in my care.  I am blessed to have her and her interest in LBD.


  1. Hello
    Wanted to let you know that this article will be included in the dementia “Symptom Perspectives” monthly links tonight, October 30, 2015
    I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.
    Much thanks,

  2. This list of questions looks important to me. I hope researchers / clinicians read and take notice.

    Your query about whether unresolved issues prompt some of your hallucinations makes me wonder if part of what's going on is that some of the functions of dreaming are being switched on while you're awake - almost like the opposite to the REM sleep disorder.

    Could some of the Parkinson's-type symptoms even be the brain mistakenly trying to tell your body not to move, as if you are asleep?