I was wondering if any one knows why or how symptoms fluctuate? One moment my husband is doing pretty good and the next moment he is struggling. It is so frustrating for him and me. I guess what I am asking is: "What is the mechanism?" Are the lewy bodies proliferating at certain times more than others? What causes the ebb and flow of the symptoms???
Thanks so much,
Roxanne (frustrated, frightened, broken)

I asked this question once of Dr. Bruce Miller of UCSF's Memory & Aging Clinic. He said that we don't really know what causes the cognitive fluctuations. He said that one theory is that the level of neurotransmitters (especially acetylcholine) in the brain fluctuates.

What a great question, and one that I've always wondered about too. It is amazing how much a person's cognition and physical abilities can fluctuate. Lynn

thanks for the question.. have always wondered myself.. how can he have a really good day and then terrible.. kept trying to see if there were any differences in his sleep or what happened during the day or food.. but once i read this was just a symptom.. i just accepted it.. but knowing why, would be really interesting... maybe some day!!

One local support group member's husband experienced fluctuating cognition. It was on the basis of that plus dementia and parkinsonism that an LBD diagnosis was given. Upon brain autopsy it was found that the gentleman had PSP (progressive supranuclear palsy). In looking back, it was thought by the neurologist that the fluctuating cognition was due to how restorative sleep was and if the person was fatigued or not.

With my husband, everything fluctuates: cognition, emotion, ability to control bladder, ability to walk, etc. I have wondered about PSP but none of the neurologists he has seen has suggested it. One internist thought it might be Multiple System Atrophy [MSA]. I was just wondering what the lewy bodies were doing: as they kill or inhibit neurons, is that why the acetylcholine drops? Then more neurons are formed and they, in turn, are taken over by the lewy bodies? It is almost like a cancer... I know his sleep is not good but sometimes he will be okay before taking a nap and then wakes up totally confused for days. It is such a mystery.
Thanks so much for all of your thoughts.
Roxanne

Now that you bring up MSA, certainly another reason for fluctuations of cognition in LBD and MSA is orthostatic hypotension.

Sadly, the name of the game in neurodegenerative disorders is that new neurons are not formed. We don't know if neuronal death is being caused by the development of Lewy bodies or if the Lewy bodies are a by-product of neuronal death.

By the time symptoms *appear* something like 60-80% of the neuronal death has already occurred. After the neurons die, they can no longer send around the neurotransmitter (acetylcholine, dopamine, serotonin, whatever) they are receivers/senders of.

totally unscientific response here…

loading….or attempt to handle load…

which load?

take your pick…

sometimes different loads that I am aware of cause a similar symptom…

sometimes I am not aware of a new additional load being added….

sometimes I can 'feel' the moments of 'overwhelm - ment'…..pre symptom…when my mind starts to not function properly on one task - maybe speech... (while still functioning properly, still mutltasking, sort of..)
…I am getting in tune with it…there is a blood rush….heat….alot of activity…then things start shutting down….one at a time…until the load is balanced with present ability?
then the symptom is apparant….for however long…..
then after some period….a temporary victory….a recovery….a let up of the symptom….rerouting accomplished? a new baseline?

when these are intense brain functions on my part….the fluctuation or presenting symptom may be so fleeting….to be not noticed externally….(handled)….like you do….
other times….its momentary…..I think you notice….but….you don't…..
other times….we both notice….but its momentary…..or just a little while….
other times…..we both wait for it to go away…..
sometimes….I am sure you notice…..and I am clueless….
all the time…..it is there…less of me……
so some of it isn't fluctuating anymore….it just ain't happening no more….

when these self inflicted loads are more of a physical nature…and more of a sustained load……
I may down…for days…in many ways…..
this is meeting the Beast head on….
if you meet him head on and don't give in…..
you can go and go until you…go down…..on the ground….
edit: to add…
when I would go head on with the Beast…I would voluntarily give up various things as the load and ability….became unbalanced….
pain….sweat…fatigue…thinking…(other things I can't think of specifically now….)…but not of... the normal range….

edit2: to add…
stiffness….plenty of stifness…rigidity…
increased tremor….
loss of balance…
less and less range of motion…
less and less ability at anything…..
until eventually….unbearable pain…
ultimately……loss of will to fight for anything except relief...

…this was the way I had to tackle things….if I wanted to finish anything….or have a hope of finishing anything….
no breaks….no time outs….no sprints…..but a marathon….every project….with fewer and fewer finish lines….
more and more….on the ground time…..
and then days of recovery….

are the fluctuations out of nowhere…..just a normal load….that was handled yesterday….meeting the Beast today?
and Beast is putting you down on the ground….
because those things that we all do…..those autonomic things….we don't choose when we face the Beast with those….
we….all….just do those things….all the time…..it is the Beast who decides then when to interfere…

so….something is changing at that moment…
increased load?
new load? ….(maybe a virus…unrelated in the body…something new….)
less ability to handle same load?

we know the Beast is growing….the disease is progressing….
could there be instantaneous dumps of disease? also….causing fluctuations?

just some thoughts about what I think about when I am trying to figure out what is happening...

Craig: Thank you so much for sharing your insight. You have aptly named this disease: The BEAST!

Robin: the orthostatic hypotension is another one of his symptoms. Dr. Neal Hermanowicz told us most patients with LBD have it.

Blessings,
Roxanne

I don't think most with LBD have OH but it's a common symptom. I've heard OH described as the most disabling and quality-of-life ruining symptom out there.

Thank you, Craig. I often wonder what my husband is feeling, but he can't explain it.

Wow, Craig. What insight you have into your experience! Thank you for sharing it with us. It helps---gives more understanding and empathy to the struggle so often unarticulated by the patient in the midst of this battle.

John has recently been experiencing more Orthostatic Hypotension, and it is very debilitating to every day life. When you feel dizzy and uncertain of your ability to move safely, everything is impacted.

When John sleeps really well, he has better days in general. I think the long term linkage to sleep issues if very important to many with LBD, IMHO. It is the first thing John's neurologist attacked and we saw improvement pretty quickly in him. It also makes the issue many have with surgery/anesthesia acting as a bad trigger make more sense.
Pat

GREAT question and I loved Craig's input.

I try so hard to understand Hubby so I can be a better caregiver for him.

I have always tried to explain Hubby's fluctuations as a neuron road block until the brain can figure out how to reroute itself.
Of course this is PURELY MY GUESS but it makes sense to me so I'm sticking to it
Sometimes the road is too damaged by lewybodies that there is no way around, through over or under it. Complete loss of function.
Other times the road is blocked (loss of function) so an alternate route is selected and attempted. Until the new connection is made the bad days come. Sometimes the new connection can be made within a matter of minutes, hrs, days, weeks or longer. I'm always surprised when a long stretch of time has passed when Hubby wasn't able to do something and then one day, out of the blue, he can.

Kathy

Kathy (49) married 30 yrs to
Bobby (74) Diagnosed DLB Oct 2007
http://www.thieflewybody.blogspot.com/

Makes good sense to me!

Kathy ~ That is a GREAT way of looking at the fluctuations!!
Thanks so much!
Roxanne